DISSERTATION
Presented in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy in Nursing
2011
CARIBBEAN WOMEN WHO FAILED IN VITRO FERTILIZATION TREATMENT:
A PHENOMENOLOGICAL INQUIRY
DISSERTATION
by
Copyright by Claudette Rose Chin, 2011 All Rights Reserved
Abstract
Background: Ethnic minorities, like the Caribbean female population, have been seeking In Vitro Fertilization (IVF) treatments, yet there is paucity in the nursing literature exploring this phenomenon. The unique experiences of Caribbean women who failed IVF treatments have not been described and, as a result, are poorly understood.
Purpose: The purpose of this study was to gain a deeper understanding of the lived experience of Caribbean women who failed IVF treatment.
Methods: A qualitative methodology in the tradition of phenomenology was warranted to answer the following research question, “What is the lived experience of Caribbean women who failed IVF treatment?” The hermeneutic phenomenological approach by van Manen (1990) directed this qualitative inquiry. Criterion sampling was utilized to select 12 women who self-identified as having failed at least one IVF treatment in the last three years, prior to initiation of the study, residing in south Florida, at least 18 years of age, able to speak and read English, and willing to speak about their experience of failed IVF treatment were interviewed. Data was analyzed following the van Manen approach.
Results: The related themes of disintegrating, disheartening, perpetuating, and guarding emerged as a total representation of the Caribbean women’s life with failed IVF treatment.
Conclusion: This research study chiefly exposed the depth of the challenges confronting these Caribbean women with failed IVF treatment and the multiple losses that were imposed. Another significant dimension of this experience of failed IVF treatment was the search for meaning, which they were compelled to address in order to move forward in their respective lives.
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TITLE PAGE i
SIGNATURE PAGE ii
COPYRIGHT PAGE iii
Philosophical Underpinnings 11
Scope and Limitations of the Study 18
CHAPTER TWO: REVIEW OF LITERATURE 21
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Psychology and Infertility…………………………………………………………………….…28
Rationale for a Qualitative Study 37
Rationale for a Phenomenological Study 39
CHAPTER FOUR: FINDINGS OF THE INQUIRY 63
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Characteristics of the Participants 72
CHAPTER FIVE: DISCUSSION AND CONCLUSION OF THE INQUIRY . 103
Exploration of the Meaning of the Study 103
Interpretative Analysis of the Findings 104
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Concepts of the Theory of Meaning 123
Implications of the Study for Nursing Education. 129
Implications of the Study for Nursing Practice 131
Implications for Future Research 132
Implications of the Study for Public Policy 133
APPENDIX B: INFORMED CONSENT FORM 149
APPENDIX C: LIST OF FREE COMMUNITY SOCIAL SERVICES PROGRAMS 151
APPENDIX D: NEWSPAPER AND INTERNET AD 152
APPENDIX E: RECRUITMENT FLYER 153
APPENDIX F: INTERVIEW QUESTIONS AND PROMPTS 154
APPENDIX G: DEMOGRAPHIC QUESTIONNAIRE 155
APPENDIX H: INTERVIEW PROTOCOL……………………………………156
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Figure 1. (2010) Postulation of van Manen’s Hermeneutical Phenomenology Chin,C (adapted from van Manen, 1990) 18
Figure 2. (2010) Phenomenological Approach to Investigating the Lived Experience of Caribbean Women Who Failed IVF Chin, C. (adapted from van Manen, 1990) 45
Figure 3. Chin’s (2006) conceptual representation of the lived experience of Caribbean women who failed IVF treatment 84
Figure 4. Theory of Meaning (Starck, 1985) 128
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Infertility is broadly defined as the inability of couples of reproductive age to conceive or to bring a pregnancy to term after one year of unprotected sexual intercourse (WHO, 2002). According to the American Society of Reproductive Medicine (ASRM), infertility is a major public health crisis affecting over six million women in the United States. Despite advancements in medical technology, the incidence of infertility is expected to increase to 7.7 million by the year 2025 (Infertility in Women, 2006).
Infertility may result from a number of factors including metabolic imbalances, lifestyle behaviors, stress, and increasing age. The causes of infertility can be divided into three broad categories: female factor (i.e., tubal damage, endometriosis), male factor (sperm dysfunction), and a combination of male and female factors, with each group constituting approximately one-third of the causes. Furthermore, infertility is in part due to the natural progression of the aging process, as research has shown that a woman’s fertility peaks in the late 20s and declines by the late 30s (American Infertility Association, 2003). It is usually diagnosed through medical interviews and physical examination of both partners. The global prevalence of infertility varies, and approximately 10 to 15% of infertile couples are diagnosed as having unexplained infertility (WHO, 2002).
Infertility is a complicated medical problem that is not experienced in a vacuum and may potentiate a variety of dilemmas. It is regarded as an issue with a great deal of uncertainty, concerning its impact on life’s journey, expectations, and outcome of how long it will last or what the end result will be, and almost no one expects to be infertile. Individuals are often shocked when they discover that they are infertile and normally go through a period of disbelief. The doubtfulness of being diagnosed with infertility is often
equated to a death sentence, for it becomes a journey filled with many trials of hope and despair that often ends with the person facing many losses such as blemished professional growth, financial insecurity, emotional instability, and basically a life other than what was expected (American Infertility Association, 2003). This experience could potentially trigger unresolved emotional issues from the past, as well as launch a major assault on the future, affecting one’s self esteem and personal identity.
Infertility is universally portrayed as a stressful experience for those afflicted with this problem, and it affects all aspects of their lives including marital, social, physical, emotional, financial, and spiritual status. It is not unusual for women to blame themselves when they first realize that they are having problems conceiving, and they often feel isolated because the fertility disorder appears to be a completely unexpected problem (Strauss, 2002). While more than 50% of the infertility cases can be attributed to a male factor or a combined couple factor, women bear the burden of the diagnoses in terms of social and emotional consequences, as well as the difficulties associated with the treatment processes (ASRM, 2003). Furthermore, society has attributed the responsibility for infertility mostly to women, and women have subsequently internalized the responsibility. Additionally, the current reproductive technologies are such that, independent of the medical diagnosis, it is predominantly the woman’s body that is manipulated during treatment (American Infertility Association, 2003).
Infertile women strive but repeatedly fail to adhere to the cultural script prescribed for women, and they suffer the ontological assaults, or the painful oppositions of body, self, mind, and the external world. Since infertility is an entity that generally remains undetected and undiagnosed until one attempts to have a child, it becomes an
illness, a cause for suffering, only by virtue of one symptom, the continued absence of a desired child. The physical, emotional, and cognitive experiences of pregnancy, childbirth, and motherhood are major life events, regarded by many as a significant rite of passage and source of meaning in life (Edin & Kefalas, 2005). As a result, infertile women often describe feelings of low self-esteem because of their failure to conceive, to give birth, and to have children, an ability that is an integral part of the female identity.
They may feel less worthy and less valued by others, not belonging to the “parental world,” which may also have implications for the relationship to family and friends resulting in strain and feelings of being left out of many social networks (Witberg et al., 2006). In general, women feel strong pressure to fulfill the societal norm of motherhood. While high-technology techniques offer hope to many persons, they also contribute to emotional, physical, and financial stress. Often, the hope provided is dampened by statistics that reveal low success rates in achieving conception overall (Olshansky, 1988).
The dilemma of infertility is even more devastating when the individual seeks treatment such as In Vitro Fertilization (IVF) and then fails the attempted process.
Unfortunately, this predicament continues to haunt women worldwide, especially women of color who are at a greater disadvantage due to their socioeconomic status and limited access to healthcare (Jain, 2006). In a society such as the Caribbean population that historically values children and considers them to be a natural achievement during womanhood, women of color who are infertile may face a myriad of tensions and discrimination (Blenner, 1990). A certain stigma is placed on women from various ethnic groups, especially blacks, when the woman reaches the reproductive years and no sign of pregnancy is being observed (Whiteford & Gonzalez, 1995).
Religious, social, and moral dilemmas may also emerge when the values of the individual conflicts with the treatment of choice. The consequences of infertility represent a major loss that can threaten central values in life and may produce a crisis that is recursive in its nature, meaning it comes back with different strengths at different stages during the individual and family life cycle (Carter & McGoldrick, 1999). For many, this crisis may be a prolonged ordeal usurping months and probably years from the individual’s life, placing a great deal of strain on personal relationships or those with family and friends. Fortunately, several treatment options exist to address the problem of infertility. These include ovarian stimulation, which is a hormone treatment for women with ovarian dysfunction, as well as Assisted Reproductive Technologies (ART), like insemination and IVF.
Conceived by a new technique called IVF, the birth of Louise Brown, in 1978, Great Britain, signified a major turning point in infertility treatment. Fortunately, infertile women could now become pregnant despite blocked fallopian tubes that interfered with the sperm’s ability to meet and fertilize the egg. Since 1983, when the first infant was conceived from IVF in the United States, the use of IVF and related procedures has increased substantially and has become a common method of treatment across the industrialized countries. Despite this procedure’s increased use, ethnic minorities comprise only a small percentage of patients in the nations IVF’s programs (Bendikson, 2004). The procedure of IVF entails the medical stimulation of the ovaries to produce multiple ova, surgical retrieval of the ova to be fertilized by sperm in a culture dish, and implantation of the embryo(s) into the woman’s uterus. Since then, the technology of IVF has been improved, and the number of IVF clinics has proliferated, but the chances of
becoming pregnant remains at approximately 25% (Infertility in Women, 2006). Furthermore, technologies such as IVF have resulted in reluctance on the part of most insurance companies to provide benefits for infertility and have rendered this medical intervention financially inaccessible to the general infertile population.
Childbearing is a developmental task that is expected to be completed in a woman’s life and signifies a central life goal, a core symbolic experience (Dunphy & Winland-Brown, 2001). The inability to fulfill the role of motherhood becomes highly stigmatized and threatens women’s sense of self, identity, meaning, and purpose in life (Benyamini et al., 2005). Essentially, childlessness affects the individual’s personal, interpersonal, and social levels of well-being. Ethnic minorities like the Caribbean female population have been seeking IVF treatments, yet there is paucity in the nursing literature exploring this phenomenon. The problem is that the unique experiences of Caribbean women who failed IVF treatment have not been described, and as a result, they are poorly understood. Research on the idiosyncratic meanings and in-depth comprehension of this complex phenomenon is inadequate. The consequence of this gap in knowledge is sobering. Understanding the experiences of Caribbean women who failed IVF treatment is paramount for nurses and other health care providers so they may provide appropriate interventions to this disenfranchised population. To gain knowledge and understanding of Caribbean women who failed IVF treatment, it is crucial to design a qualitative study to elucidate the lived experiences of these individuals.
The purpose of this study was to gain a deeper understanding of the lived experience of Caribbean women who failed IVF treatment. This research aimed to give these women a voice to express their individual experiences, feelings, and ideas about life after failing IVF treatment. In order to fully describe the experience of failing IVF treatment and enhance understanding of their needs, the researcher employed a qualitative phenomenological perspective to guide this study.
The overarching research question that guided this phenomenological research study was: “What is the lived experience of Caribbean women who failed IVF treatment?”
Fertility issues have come to the forefront of our attention in recent years.
Understanding the problem of failed IVF treatment as it relates to Caribbean women is important to nursing science because there is no information in the nursing literature about the influence of failed IVF in this population. The data gathered may have implications to add to the body of nursing by enhancing nursing education, practice, research and public policy. A study of this caliber may also highlight the unique experiences of this particular ethnic group. Nurses play an integral role in helping women with infertility problems understand and deal with their reactions to failed IVF treatment. Nightingale noted that nurses are a vital and irreplaceable link in the healthcare chain, according to her diary (as cited in Dossey et al., 2005). Subsequently, inquiry via the lens of nursing may render insights on how best to plan, care for, and communicate with these
individuals about their overall well-being regarding infertility needs. The cornerstone of nursing was formulated on the premise of caring for the patient; therefore, it is imperative for nurses to comprehend the lived experiences of those individuals affected by this problem and help these women address the issues that may arise.
To effectively protect and care for patients and families with infertility dilemmas, it is essential that nurses understand the infertile women’s physical, psychosocial, and educational needs. The current nursing curricula do not include the care of patients and families who have failed IVF treatment despite the escalation in the use of IVF. In the Caribbean society, infertility and involuntary childlessness has been attributed to an act of God, punishment for sins of the past, prolonged use of contraceptives, distinct dietary habits, and the result of witchcraft. Individuals who are thought to be infertile are generally ostracized and relegated to an inferior status and stigmatized with labels such as mule or barren (Barrow, 1996). The existing negative attitudes and beliefs about infertility are bound to contribute to the individual’s sense of despair, distress, and morbidity. Research of this caliber may empower nurses with more wisdom to better understand and acknowledge the experiences of failed IVF treatment in Caribbean women and evaluate the choices of counseling and support services that might be available to them. Furthermore, rendering culturally competent care remains paramount in the nursing profession. Professional nurses must employ a high level of cultural understanding and awareness to meet the needs of the ever-revolving multicultural societies. This study could potentially furnish nurses with tools to be more culturally sensitive during their interactions with this marginalized and vulnerable population. It
may also increase nursing knowledge of how to develop an educational program geared towards Caribbean women who failed IVF.
It is hoped that a more advantageous way of understanding the experience of Caribbean women who failed IVF treatment may afford nurses an opportunity to better provide for their physical care as well as their psychosocial, spiritual, and emotional needs. This may also provide insight on how best to assess, plan, and implement care to these individuals. The nursing profession should be the voice in ensuring that patients understand the implications of their treatment choice, receive sufficient emotional support, and ascertain whether or not the affected individual can cope in a healthy way with the consequences of IVF treatment. Furthermore, nurses have an ethical responsibility to advocate for their patients. This is accomplished by making certain that patients undergoing IVF treatment have all their questions answered and are adequately educated about the procedure. This includes assessing their mental health status, spiritual well being, and social support network, especially when ascertaining levels of social isolation in the event of failed IVF.
Few practitioners acknowledge the emotional stress associated with the intensity of treatment schedules, the physical effects of the medications, the impact on the woman’s self-esteem, and the financial impact associated with IVF treatment. They appear to be most concerned with treating the physical impairment only. It is important for nursing professionals to be sensitive to how infertility influences a woman’s life, her response to subsequent life events, and the meaning that she attaches to life transitions (McCarthy, 2008). Of all those individuals in health care who interact with the patient in
a patient-care setting, it is the nurse who spends the greatest amount of time with the patient. The interpersonal nature of nursing allows patients to share their perceptions, concerns, and fears with nurses.
Research is a systematic process of investigation that uses disciplined methods to answer questions or solve problems with the main aim of expanding a body of knowledge (Powers & Knapp, 1995). Nursing research is designed to develop knowledge about issues of importance to nurses utilizing this methodical approach. Essentially, research enables nurses to describe the characteristics of a particular nursing situation about which little is known, explain the phenomena that must be considered in planning nursing care, predict the possible outcomes of certain nursing decisions, control the occurrence of undesired outcomes, and initiate activities that may promote desired client behavior (Polit
& Beck, 2001). The development and utilization of nursing knowledge is essential for continued improvement in patient care. Nurses increasingly are expected to adopt a research-based or evidence-based practice, using research findings to inform their decisions, actions, and interactions with clients. The incorporation of high-quality research evidence into clinical decisions and clinical recommendations renders the nurse professionally accountable to their client. This procures a culture of evidence-based practice in nursing, which is essential to the advancement of clinically effective interventions. The advancement of nursing research results in the acquisition of knowledge necessary for the nurse to practice competently and design efficacious interventions based on scientific data.
Professional nurses acknowledge the need for more evidence-based nursing research, especially in the disenfranchised and under-represented populations. There is no preliminary data present in the nursing literature regarding the phenomenon of failed IVF treatment in Caribbean women. This dilemma is poorly understood, and as a result, this highlights the necessity for extensive research. Exploring the experiences and personal feelings of Caribbean women who failed IVF treatment is crucial. A research of this caliber may render a scientific body of evidence that could be potentially vital in addressing the needs of this population. Information gathered may provide data that nurses could employ in providing anticipatory, current, and follow-up support and education throughout this process that promotes health and wellness specific to the needs of this marginalized patient population.
Public policy includes all policies (governmental and non-governmental) that affect individual and institutional behaviors under the respective government’s jurisdiction. The three major public policy categories are defense, domestic, and foreign. Included under the rubric of domestic policy are health policies. These pertain to health or influence the pursuit of health (Harrington, Carroll, & Estes, 2001). Racial disparities are pervasive throughout the United States health care system, as evidenced by minorities having more severe disease and poorer outcomes. The impact of racial disparity in gynecology, and more specifically infertility and assisted reproductive technology outcomes, must remain a priority for the nursing profession to make positive changes. In the case of failed IVF treatment in the Caribbean women population, policy makers, stakeholders and administrators need more awareness to fully comprehend the meaning
of living with this dilemma. This research study may increase knowledge and stimulate further research related to infertility care within this underserved group and furnish these policy makers with scientific data to make decisions in funding effective health care interventions. Currently only 10 states, including New Jersey, Arkansas, Hawaii, Maryland, Massachusetts, Illinois, New York, Ohio, Rhode Island, West Virginia, and Texas, provide insurance coverage for infertility treatments (Jain, 2006). The findings of this study may affect public policy by expanding nursing knowledge in helping to ensure and advocate for equal access to quality healthcare to eliminate disparities in IVF coverage nationwide.
A philosophical framework was used to guide this research study. The framework assisted the researcher to conceptualize, contextualize, and furnish the pathway in which the study should be conducted. The aim of this study was to describe and interpret the experiences of a specific group of individuals as they live after failing IVF treatment.
Describing and interpreting lends itself to a philosophical framework that embraces multiple realities and contexts. This is congruent with a post-modern perspective.
The qualitative research approach follows the naturalistic approaches of scholars like Kant and Weber and began as a counter movement to positivism. Naturalism developed as an extension of the philosophical underpinnings of postmodernism and underscores deconstructing and reconstructing (Polit & Beck, 2004). Referred to as a synonym for non-experimental and ethnographic research, qualitative research is pragmatic, interpretative, and grounded in the lived experience (Creswell, 1998).
Qualitative research refers to the meanings, concepts, definitions, characteristics, metaphors, symbols, and description of things (Berg, 2007). Qualitative researchers assume that society is reasonably structured and orderly; knowledge is not objective truth but is produced inter-subjectively where the researcher learns from the participants about the meaning of their lives by exploring the subject directly while maintaining a certain stance of neutrality (Marshall & Rossman, 2006). They are more concerned with understanding situations and events from the viewpoint of the research participants.
Qualitative researchers assume that the world is made up of multiple realities, socially constructed by different individual views of the same situation.
Naturalistic inquiry occurs in the field, often over an extended period of time, investigating the quality of relationships, activities, situations, or materials. Qualitative researchers have a much greater flexibility in both the strategies and techniques they use and the overall research process itself. Qualitative research uses inductive reasoning with unstructured, open-ended interviews and participant observation to generate qualitative data in the form of words or narratives and pictures. Researchers integrate information to develop a theory or description that helps explicate processes under observation. Heavy emphasis is placed on understanding the holistic description of the human experience as it is lived within the context of those who are experiencing the phenomena. The designs tend to emerge during the course of the research. The collection of data and analysis typically progresses concurrently and as the researcher shifts through data and becomes immersed in the situations in which they do their research, new insights are gained, new questions emerge, and further evidence is sought to amplify or confirm the insights. How people make sense out of their lives is a major concern for qualitative researchers.
Qualitative research renders rich in-depth information that has the potential to elucidate varied dimensions of a complicated phenomenon. Qualitative researchers do not try to generalize beyond the particular situation.
The main goal of qualitative or naturalistic research is to comprehend the meaning of human action. This type of research is most interested in how humans arrange themselves and their settings and how occupants of these settings make sense of their surroundings through symbols, rituals, social structures, and social roles. The qualitative researcher attempts to describe and interpret some human phenomenon, often in the words of the selected informants. They seek answers to questions by examining various social settings and the individuals who inhabit these settings. The meanings that people attach to their experiences are not accidental or unconnected; instead, they are essential to the construction of meanings. In order for researchers to understand the meanings that emerge from these interactions, they either must enter into the defining process or develop a sufficient appreciation for the process so that understanding can become clearer.
Qualitative research is constructed on certain philosophical underpinnings. They include ontological, axiological, epistemological, and methodological perspectives. These essentially assist the researcher in comprehending the various realities that embrace qualitative research. The ontological and axiological perspectives are based on the subjective view of the individual. However, these might have multiple interpretations.
The epistemological perspective addresses the relationship between the researcher and what is being studied. The researcher is the primary instrument for data collection and analysis (Creswell, 2007). This interaction allows the researcher to obtain rich dialogue
and “thick description,” which offers clarity and detail about the experience from the research participant’s viewpoint. The methodological perspective deals with the use of inductive reasoning by moving from specific to general in an attempt to comprehend the whole phenomenon. The qualitative researcher seeks to discover patterns and common themes as seen by those who experience the phenomenon. The information collected is developed into concepts and theories by the researcher to increase awareness through discovered meanings. Therefore, the qualitative research approach was utilized to address this particular research question because this type of research approach searches for a deeper understanding of the participant’s lived experience of the phenomena under study and accepts the value of context and setting.
It is generally acknowledged that Edmund Husserl (1859-1938) is the father of phenomenology, although Priest suggests that it was Kant who first used the Greek term in 1764. Nonetheless, it was Husserl’s writings on phenomenology that served as the impetus of this philosophical movement that spread throughout Europe. Husserl looked for that conscious human experience and the process of how that knowledge was achieved (Smith, 2006). This philosophy was embraced by Husserl in an effort to revive humanism and grasp the meaning that individuals associated with their way of life.
According to Husserl, a person can only experience what he or she experiences. The essence is the central underlying meaning of the experience shared with the different lived experiences (Husserl, 1970). Phenomenological reduction or bracketing was developed by Husserl. He proposed that the researcher needed to bracket out the outer world as well as individual biases in order to successfully achieve contact with essences.
This is a process of suspending one’s judgment or bracketing particular beliefs about the phenomena in order to see it clearly.
German philosopher Martin Heidegger as well as Merleau-Ponty and Jean-Paul Sartre from France were also leading proponents of the philosophical concept of phenomenology. Heideggerian principles were built upon the original works of Husserl. He believed that we live in a world based on hermeneutics and focused his philosophy on the experience of living or being, not the process of how things are known (Rodgers, 2005). Emphasis was placed on the individual’s cultural, social, and historical context, which essentially served to form the individual’s background. According to his views, consciousness is not separate from the world but is a formation of historically lived experience. Heidegger saw bracketing as impossible, as one cannot stand outside the pre- understandings and historicality of one’s experience because they co-constitute each other (Munhall, 2007).
More than five decades after Husserl’s death, Merleau -Ponty questioned the meaning of phenomenology (Creswell, 1998). She defined consciousness as sensory awareness of and response to the environment where one can only know through his or her consciousness or the subjective nature of the world. “Distinct subjective and objective worlds do not exist; objectivity is only achieved through subjective consciousness or perception” (Munhall, 2007, p. 22). These philosophers further refined and adapted philosophical teachings to encompass their own philosophical principles.
The essential underpinning of phenomenology is that research can assess realities as “lived.” The major concern of phenomenology is to comprehend how the everyday, inter-subjective world is constituted (Schwandt, 2000). Fundamentally, it entails
studying the lived experiences of individuals who had experienced the same phenomenon in an effort to understand the human experience. Phenomenology is a philosophy as well as a method that is primarily concerned with the individual’s reality or personal meanings, his or her “life world” (Smith, 2003). The life world is the world as lived by a person, a whole being, complete with worldview, relations, and experiences. It is understood as what we experience pre-reflectively, without resorting to categorization or conceptualization, and quite often includes what is taken for granted or those things that are common sense (Husserl, 1970). It is within the life world that the person has the lived experience. The lived experience is that which is lived by a person at a given time, in a given place. It is pragmatic and implicates the totality of life. Four aspects of lived experience that are of interest to phenomenologist are spatiality, corporeality, temporality, and relationality. Phenomenology is used to study people’s experiences and how they make meaning in their lives, studies relationships between what happened and how people have come to understand these events, and is interested in people clarifying their essences (Polit & Beck, 2004). Phenomenology is concerned with wholeness that examines entities from various sides, angles, and perspectives until an amalgamated vision of the essences of a phenomenon or experience are achieved.
Phenomenological researchers ask, “What is the essence of this phenomenon as experienced by these people and what does it mean?” They investigate subjective phenomena in the belief that critical truths about reality are grounded in peoples’ lived experience. Topics appropriate for a phenomenological approach are those that are fundamental to the life experiences of humans. Clearly, this researcher sought to gain information about the lived experiences of having gone through unsuccessful IVF
treatment. Utilizing the qualitative lens, the researcher sought to know what the participants were thinking and why they think what they do. Basically, the researcher investigated various reactions to, or perceptions of the phenomena, with the intent of gaining insight into the world of the research participants to describe their perceptions and reactions to the phenomena (Frankel & Wallen, 2006). The qualitative methodology in the tradition of phenomenology was most effective in describing, exploring, and comprehending the human experiences of these women as they told their stories. There are several means to conducting phenomenological inquires. Since this study was seeking descriptions and interpretations of life experiences to a body of knowledge, it lends itself to following a hermeneutic phenomenological approach. Hermeneutic phenomenology searches for the experience in its natural setting with its multifaceted characteristics and deals with the description and interpretation of meanings. van Manen (1990) believed in the human science approach, combining phenomenology and hermeneutics. In an effort to comprehend the idiosyncratic meaning of having failed IVF treatment, the researcher used the approach by van Manen that seeks to uncover the meanings of everyday human experiences via human science. His method begins with the day-to-day lived experience of individuals, as they explore their world. He described phenomenology as how one acquaints oneself to the lived experience, hermeneutics as how one understands the context of life, and semiotics as a way to form a common language to unite the two methods (van Manen, 1997). The aim of phenomenology is to “construct an animating, evocative, descriptive of human actions, behaviors, intentions, and experiences as we meet them in the life world” (van Manen, 1997, p. 19). van Manen accomplished this by combining and intertwining description, interpretation, and language.
Figure 1. (2010) Postulation of van Manen’s Hermeneutical Phenomenology Chin,C (adapted from van Manen, 1990).
This study consisted of a purposeful sampling of women who have identified themselves as being of Caribbean descent, residing in South Florida, and having failed at least one IVF treatment. Research participants were those individuals who desire to participate, speak English fluently, are at least 18 years of age, and are no more than three years post failed IVF treatment prior to the study. The potential limitation of the study centered on the possibility of participants stating what they believe the interviewer wants to hear. van Manen (1997) proposed that assumptions and biases are always present, and the principal researcher must acknowledge and accept them. The purposeful sampling procedure decreases the generalizablity of the findings to the population at large. The
findings of this study included the stories of those individuals who voluntarily share their lived experiences.
This phenomenological study aimed to highlight the lived experience of Caribbean women who failed IVF treatment. This inquiry described the individuals’ physical and psychological responses to this experience as their reality and life world. This offered great insights to better appreciate the experience of having failed IVF treatment and add to the body of nursing research and knowledge by enhancing nursing education, practice, research, and public policy. The lived experience of phenomenology was a sufficient choice for researching this population because it served to enable the researcher to gain a deeper understanding of their lived experiences. Chapter Two provides a review of the literature providing the historical and experiential context.
Synthesis of the literature affords a comprehensible reflection of existing material relevant to a topic of study. The cardinal purpose for conducting a review of the literature is to ascertain what has already been documented about a given topic. In addition, since this is a qualitative study, the literature review is being conducted to place this topic in context. By obtaining a full appreciation of what has already been studied, the researcher potentially avoids duplicating existing research and identifies gaps in the literature that could be potentially explored.
The purpose of this phenomenological study was to obtain a deeper understanding of the lived experience of Caribbean women who failed IVF treatment. Explicitly, the researcher sought to present an opportunity to articulate these women’s experiences, feelings, and ideas about their lives after unsuccessful IVF treatment. To complete this study, it was crucial to examine and synthesize the current literature to identify the key elements, patterns, and gaps that may exist in the literature.
To conduct this literature review, a relevant search across disciplines associated with this topic was completed. The researcher utilized numerous information sources that included books, Internet resources, professional journals, and periodicals. Appropriate articles were obtained utilizing database sources from Science Direct, EBSCOhost, Blackwell, CINAHL, and MEDLINE. The keywords and search terms included infertility, infertile women, infertility treatments, IVF treatment with success and failure rate, access, minority women, and Caribbean women. Citations were limited by language to English and by subject to explore the experience of having failed IVF treatment. The
researcher initially searched for sources published within the last five years. This presented a challenge because only a limited number of literature was obtained that relates to infertility and IVF treatment but not specific to Caribbean women. The researcher then expanded the time frame for the search up to 15 years earlier to get further understanding of the work presented thus far in relation to the topic of interest. The researcher was still unable to locate seminal studies or any study that addressed the experiences of Caribbean women and IVF treatments in general.
The involuntary inability to conceive and carry a child to term is a distressing experience that carries with it many emotional consequences. Appreciation of infertility as a complex phenomenon was minimal prior to the widespread use of high-technology procedures such as IVF to diagnose and treat infertility. Menning (1977) was the pioneer in recognizing and publicizing the emotional turmoil that accompanies unwanted infertility. Since the birth of Louise Brown in 1978, the first successful IVF treatment performed in Great Britain, and 1983, when the first infant was born from IVF in the United States, much has been written and researched about the topic of infertility. From the classic work of Menning, (Olshansky, 1985, 1987; Sandelowski, 1987; Sandelowski
& Jones, 1986; Sandelowski & Pollock, 1986; Woods & Luke, 1984) began to address infertility as a complex psychosocial human experience and the psychological aspects of high-technology treatments. These studies basically revealed that while these high- technology techniques such as IVF offered hope to many individuals, they also contributed to emotional, physical, and financial stress.
The next wave of research looked more deeply into the personal experiences of infertility. Olshanksy (1988) investigated responses to high-technology infertility treatment. This secondary analysis was conducted on data originally collected through grounded theory methodology to study individuals’ and couples’ experiences of infertility. This study focused on seven infertile couples who chose high-technology options in their pursuit of fertility. Six themes emerged including drivenness, difficulty getting on with life, marital and sexual disruption, uniqueness of responses related to personal meaning, financial stresses, and exacerbated cyclical pattern of hope and despair. The individuals basically felt obligated to try these high-technology infertility treatments in order to be sure they had done everything possible to conceive, hence the drivenness approach. Subsequently, they reported difficulty getting on with life due to disruptions in the areas of marriage, intimacy, and finances. Substantial research continued in the 1990s that basically informed practitioners about the stresses involved in prolonged fertility treatments from the efforts of authors such as (Abbey et al., 1994, Berg & Wilson, 1991, Greil 1991, and Olshansky, 1996).
The theory of “identity as infertile” was developed by Olshansky (1996) to reflect the experiences of women at various stages of confronting infertility, including after resolution of infertility. According to this theory, women who are distressed by their infertility often take on an identity of themselves as infertile, pushing aside other important identities such as friend, spouse, partner, or family member. This strain sometimes becomes unbearable, the self-esteem plummets, and loneliness and sadness often set in. The result is social isolation and disconnections from others. These identities
then become peripheral while the identity as infertile becomes the central, overriding characterization.
Since then, the stress of infertility and its treatment continues to be explored in both quantitative and qualitative research (Benyamini et al., 2005). General areas of research focus have included emotional consequences, socioeconomic disparities, and the decision making process in relation to infertility and treatment. In addition, these research studies have also revealed a disproportionate concentration on exploring the impact of infertility for women actively engaged in treatment, with only 2% of the literature dedicated to the post-treatment phase of the infertility experience (McCarthy, 2008).
In today’s society, most areas of sexuality and human reproduction are openly discussed; yet, in spite of the fact that one in six couples encounters difficulties in having a baby in the United States, the subject of infertility remains largely taboo. Unfortunately, the majority of research on IVF has focused on Caucasian, educated, middle-upper class participants, addressing their infertility issues and experiences. For example, Green and his colleagues (2001) investigated racial and economic differences of couples seeking infertility services, reporting that over 85% of the 756 patients sampled were white, while only 10.2% were black. This unevenness in sample ratio (white versus black) appeared to be a dominant issue throughout the studies reviewed. Apparently, while the demand for fertility services has continued to escalate, these services are more often used by women who are white, nulliparous, older, well educated, and from higher income brackets (Chandra & Stephen, 1998). Another major dilemma noted in these studies was that black couples often fail to get diagnosed and treated for infertility while white couples tend to seek treatment for infertility in greater numbers. In addition, infertility is often the first
roadblock faced by white couples, while blacks are distracted by such primary roadblocks as food, shelter, and clothing (Staneic & Web, 2007). As a result, only a few studies were found including black women who were primarily African American, but none addressed the lived experiences of IVF treatment whether successful or unsuccessful. Clearly, there is a huge gap in the nursing literature with regards to Caribbean women, infertility issues, and especially their lived experiences. Subsequently, the additional studies that were reviewed will be divided up into the disciplines of nursing, psychology, and medicine.
Reproduction is the only means of sustaining the human race. Infertility blocks a woman from achieving a highly desired and socially approved goal, motherhood. This culturally shaped desire to have children appears to be extremely strong, transcending sex, age, race, religion, ethnicity, and social class division. A qualitative study by McCarthy (2008) examined women’s lived experiences of infertility after unsuccessful medical intervention. The purpose of this study was to explore the phenomenon of women’s experience with infertility in the aftermath of unsuccessful medical treatment. A purposive sample of 22 women between the ages of 33 and 48 years participated in a hermeneutic phenomenological research process and were interviewed 3.9 years after unsuccessful medical treatment. This study revealed the depth of the challenges women with infertility face in confronting the multiple losses imposed by infertility. Women described the existential challenges to their sense of self, their identity, along with the meaning and purpose of life. The paradoxical dimensions of loss and opportunity in their experience contributed to an altered view of themselves and their world. Infertility and its
role as a life-defining experience pervaded their stories of living with infertility after unsuccessful treatment.
Essentially, the results indicated that these women’s descriptions of infertility revealed an experience of intense suffering coupled with an introspective effort to rediscover a sense of self and a feeling of balance, purpose, and meaning in their lives. They reported struggling to reconcile their opposing identities of self, views of the world, and images of an anticipated future. They experienced loss and opportunity, emptiness and gratitude, and infertility as a present absence. A significant dimension of the experience of infertility was the search for meaning they were compelled to address in order to move forward in their lives.
A quantitative study by Luske and Vacc (2000) investigated the levels of grief and depression and the coping mechanisms of women undergoing infertility treatment. The purpose of this study was to identify the levels of grief and depression and the coping mechanisms of women with infertility problems who participated in IVF or ovulation- induction medication treatment. A sample of 100 women who were patients at two reproductive centers in the southeastern United States was selected. Fifty of these women were IVF treatment patients while the other 50 were ovulation-induction patients. Pre-test and post-test data were obtained from both groups of patients. A demographic form, Schedule of Recent Experience, Grief Experience Inventory, Depression Adjective Checklist, and Ways of Coping Checklist were used to collect the data. The hypothesis that post-test scores on the Grief Experience Inventory and the Depression Adjective Checklist would be significantly higher than pre-test scores for women who have a negative pregnancy test following IVF and ovulation-induction medication treatment was
investigated with a dependent T Test. Pre-test and post-test means were not statistically significant for the IVF group (t {49} =1.29). All other tests yielded significant results indicating partial support for the hypothesis, Grief Experience Inventory (t {49}=3.14, p
< .01). For the ovulation-induction medication group, a significant difference was found on pre-test and post-test scores for the Depression Adjective Checklist (t {49}=2.56, p<
.05) and the Grief Experience Inventory (t {49}=3.80, p<.001). The hypothesis that failure to become pregnant following IVF would result in more depression and grief than that exhibited by ovulation-induction medication was not supported. An independent T Test revealed that the difference in post-test scores for the two groups was not statistically significant on the Depression Adjective Checklist (t {98}=1.40) and the Grief Experience Inventory (t {98}= .51). The groups also differ significantly on the pre-test scores for Depression Adjective Checklist (t {20}=.09). Multiple regression analysis was used to determine the amount of variance in scores on the Depression Adjective Checklist and Grief Experience Inventory and did reach significance at the .05 level.
The results indicated that both groups of women experienced measurable levels of grief and depression before, during, and after treatment. Higher scores on the Grief Experience Inventory were found for both groups of women when pregnancy did not occur. The participant’s age, infertility problem, years of infertility, financial impact, and the number of past IVF cycles were not found to have any influence on the level of grief or depression. The women used isolation coping behaviors such as self-talk and sleep.
The overall commonality between these articles is that when pregnancy was not achieved, a significant amount of distress arose. This level of distress affected the lives of these women in various forms. It remains evident that the existing coping measures are
inadequate to deal with these dilemmas. Health care professionals should be advised to assess women’s overall well-being and mental health status with particular attention to their social support network as a basis for determining supportive services that may be required in the wake of unsuccessful treatment for infertility. In the case of Caribbean women who failed IVF treatment, similar dilemmas may arise, and ascertaining support services to assist with these challenges remains paramount. Establishing a foundation to address this population will add to nursing knowledge and improve nursing science.
A qualitative study by Todorova and Kotzeva (2006) investigated the contextual shifts in Bulgarian women’s identities in the face of infertility. The purpose of this study was to examine the experience of women facing infertility and infertility treatment in Bulgaria. A purposive sample of nine women was selected. The women were asked open- ended questions regarding their experiences of living with infertility, their experiences of treatment, and their relationships with others. The method of Interpretative Phenomenology Analysis was utilized. The following four themes emerged: identity as incomplete, absent, or invisible; identity as present but separate; identify shifts through disembodiment; and identity as nurtured and nurturing. The results of this study basically highlighted the complexity of identity construction as it relates to the condition of infertility within the cultural context of the Bulgarian society. This study brought light to the idea that from a cultural context, the constructions of the self. Childlessness represents a mark of difference, otherness, and stigmatization that exists in various forms and layers. The Bulgarian society is a child and family-oriented society. An incomplete
social status with a sense of emptiness, to the extent of an embodied depersonalization, was attributed to childless women in this society.
A quantitative study by Benyamini, Gozlan, and Kokia (2005) examined the variability in the difficulties experienced by women undergoing infertility treatments. The purpose of this study was to identify the variety and extent of difficulties experienced by infertile women, primarily at the initial stages of treatment. A cross sectional survey was used to investigate 242 women undergoing evaluation and treatment of fertility problems. The analysis included a list of difficulties administered using a 5-point response scale along with a short version of the Infertility Specific Well-Being (α= .90) and Distress Scale (α=.89). The results indicated that a total of 22 difficulties resulted from infertility and its treatment. Some of these difficulties included the monthly anticipation of treatment results, lack of spontaneity in their sexual relationship, uncertainty regarding the future, negative feelings aroused by the infertility problem, and the physical discomfort involved in treatment. Findings indicated a great variability in the extent to which they experienced these difficulties, but more distress and lower well- being were related to greater experiences of difficulties.
A qualitative study by Wirtberg, Moller, Hogstrom, Tronstad, and Lalos (2006) explored life 20 years after unsuccessful infertility treatment. The purpose of this study was to obtain an increased knowledge and deeper insight into the long-lasting effects of, and coping with, involuntary childlessness for a group of women who had sought help for infertility and had completed infertility treatment over 20 years ago. A purposive sample of 14 women was utilized. The stories were organized, and the major life theme that emerged was that childlessness has had a strong impact on all the women’s lives. They
experienced the effects on personal, interpersonal, and social levels. Half of the women were separated; sexual life was affected in negative, long-lasting ways; and the effects of childlessness were increased during the grandparent phase. Many coped with their childlessness by caring for others, such as children of friends or relatives, elderly parents, or pets. This study basically showed the need for developing models of counseling and support that stimulate self-reflection and strengthen personal resources and empowerment for individuals and couples experiencing involuntary childlessness.
The overall commonality among these studies essentially highlighted the idea that a great level of distress and a lower sense of well-being are directly related to a greater amount of difficult experiences. When self is constructed by culture, the construction of identity will be greatly affected. In a child and family-oriented society like the Caribbean population, women who failed IVF may be at risk for developing issues related to their sense of well-being and place in society. Understanding more about these adversities will allow for more culturally competent nursing care and add to the body of nursing knowledge and science.
A quantitative study by Seifer, Frazier, and Grainger (2007) examined the disparity in assisted reproductive technologies outcomes in black women compared to white women undergoing IVF treatment. The purpose of this study was to compare success rates in black and white women undergoing IVF. This retrospective cohort study included patients from a database from the national registry who received treatment from 1999-2000, a total of 80,309 IVF cycles. Data was analyzed using SPSS live birth rate per cycle started. The live birth rate was 26.3% (95% confidence interval {CI}, 25.9%-
26.7%) among white women compared with 18.7% (95% CI, 17.5%-20. %) among black women (rate ratio, 1.41). Their results demonstrated that black women were less successful at achieving live birth than Caucasian women. Overall treatment outcomes for blacks compared to Caucasian were also unsatisfactory.
A qualitative study by Peddie, Teijlingen, and Bhattacharya (2005) examined patients’ perspectives of decision making at the end of IVF treatment. The purpose of this study was to explore the decision making process at the end of unsuccessful IVF treatment, including women’s views on the quality of care and level of communication received from the IVF clinic staff. Semi-structured interviews were conducted with a purposive sample of 25 women who decided to end treatment after unsuccessful IVF treatment. The results indicated that these women experienced difficulty in accepting their infertility and that their infertility issue would remain unresolved. It was also indicated that they had started with unrealistic expectations of treatment success and felt vulnerable to the pressures of both the media and society. Even though the decision to end treatment was difficult, the women reported that it offered many women a way out of the emotional distress caused by IVF. Nevertheless, they also voiced that the process of decision-making created a sense of “confrontation” whereby they had to address issues they previously avoided.
Lastly, a quantitative study by Jain (2006) examined the socio-economic and racial differences among patients seeking care. The purpose of the study was to examine the socio-demographic differences based on patient race/ethnicity among infertility patients seeking care in a state with mandated coverage of infertility. A cross-sectional survey was used to evaluate 1,500 participants. The results indicated that African
American women experienced a significantly longer duration of infertility before seeking care compared with Caucasian women (4.3 vs. 3.3 years, respectively; P= .03). In regards to the infertility diagnosis, a significantly greater portion of African American and Hispanic women had tubal factor infertility compared with Caucasian women (24.0 % and 27.3% vs 5.3% respectively; P=.001). Looking at the highest level of education attained by patients, a significantly greater proportion of African American and Hispanic women had less than a four-year college degree compared with Caucasian women (48% and 40.9% vs 13.2%, respectively; P < .001). Examining the gross annual household income of patients, a significantly greater portion of African American and Hispanic women had household incomes below $100,000 compared with Caucasian women (72% and 68.2% vs 37.3%, respectively; P < .01). Basically, African American women were more likely to seek infertility treatment after a longer duration of failed conception compared to Caucasian women. In addition, African American and Hispanic women were more likely to have tubal factor infertility, a lower educational level, and a lower household income compared with Caucasian women.
The commonalities between these articles basically revealed that black women continue to have unresolved infertility issues. These unresolved issues subsequently contributed to these women being more vulnerable to society in general, especially from the confrontations they encountered. Seeking treatment was also delayed significantly for the black women, which may be related to a higher unsuccessful rate in this population. In order to have improved treatment outcomes, further exploration is needed to address these issues. In the case of the Caribbean women who failed IVF treatment, it was quite evident that research was needed to address some of these same issues that may arise.
Experiential context is used to ruminate on the personal or professional perspective the researcher brings to the study. This provided this researcher an opportunity to disclose her background, experiences, values, assumptions, and feelings as they relate to the selected topic studied. It gave her permission to reveal any prior connections she may have to the topic, issue, or setting that she plans to investigate.
Essentially, the main purpose of this reflection was to emphasize how one’s pre- interpretations and re-interpretations of an experience should be scrutinized as contexts of inquiry.
My profound interest regarding infertility grew out of my personal experience working as a registered nurse at a local hospital in Florida for approximately six years. I have been associated with fellow nurse coworkers who have been experiencing infertility and trying to conceive to no avail. From this experience, I began to realize that the attainment of parenthood was central to the identity of several of these individuals.
Evidently, most cultural groups identified infertility as a major problem, with strong stigmas attached. As I furthered my investigation on the issue of infertility and its treatment options, I began to realize that there was a paucity of research regarding this particular ethnic group and their experiences with infertility and its treatment. This has increased my inquisitiveness regarding this particular ethnic group and their experiences of failed IVF treatment.
In qualitative research, the researcher is closely involved with the research participants. In order for me to discover the true essence and meaning of the life experience of failed IVF treatment for the Caribbean woman, I took measures to be
cognizant of my individual biases and attempted to set aside and bracket preconceived perspectives, learned feelings, and personal experiences to improve my ability to hear the voices of the research participants. As van Manen (1997) proposed, when we examine a phenomenon we sometimes have too much intimate knowledge about the subject being studied. This may create a problem for the researcher by introducing preconceived assumptions and biases, either positive, negative, or both into the investigation. To avoid influencing the study, the researcher must suspend or bracket her beliefs. The researcher relied on self reflection to expose her pre-suppositions by continually verbalizing, audio recording, and journaling them throughout the study process. I employed an open mind with neutrality while keenly listening to the participants as they answered open-ended interview questions. I avoided leading statements or non-verbal reactions that may influence the participants’ responses to my inquiry. van Manen (1990) described reality as being co-created by the investigator and the participants; therefore, I engaged the participants to examine the themes that emerged in the study, to clarify descriptions of their lived experiences, and to validate that I was accurately seeing their experiences through their lens and hearing their stories through their voices.
Much research has been conducted on infertility and treatment issues. However, no research has focused on the lived experiences of Caribbean women who failed IVF treatment. There was a gap in the nursing literature that begged for further investigation. This inquiry provided the understanding needed to begin to address this topic through an empirical lens. Chapter Three provides a thorough explanation of the strategies that were utilized to conduct this study, in addition to the ethical considerations and steps to ensure research rigor.
The converging point on a greater portion of qualitative nursing research has been on how individuals decipher different phenomena based on their personal meaning.
According to van Manen (1990), human science research is primarily an act of caring with a deep aspiration of knowing that which is most essential to the being. The fundamental underpinning of phenomenology is that research can assess realities as lived. Furthermore, human purposes and concerns “pre-structure” the human world so that what is considered noteworthy about an event or object is a function of or embodies that concern (Dreyfus, 1972). The comprehension of these meanings is predominantly found in the transaction between an individual and a situation so that the individual both constitutes and is constituted by the situation (Munhall, 2007). The basic premise of phenomenology is that the individual’s experience can be recapitulated by techniques such as interviews, observations, journals, art, and various forms of creative writing (Creswell, 2007). Phenomenological research not only adds to the body of knowledge but also transforms the researcher in the process. This type of human science research attempts to explain the experiences that were previously obscure as it sets out to make sense of a certain aspect of human existence (1990).
Influences from many European writers, philosophers, and scholars, including van Kaam, Giorgi, Colaizzi, and van Manen developed their own method of analyzing phenomenological data. The philosophical framework that guided this research study was based on the human science approach of hermeneutic phenomenology. Phenomenology is
both a philosophy and a theoretical method. Hermeneutical phenomenology interprets the texts of life by exploring the lived experience of those who have experienced a phenomenon. This promoted articulation of the lived experience and involved the research participant as a collaborator in this study. van Manen (1997) follows the Heideggearian phenomenology, which utilizes the interpretative Hermeneutics along with the researcher actively interpreting and analyzing data based on their own level of knowledge and experience. This process requires the researcher to methodologically, carefully, and thoroughly capture and describe how individuals experience some phenomenon, essentially how they perceive it, describe it, feel about it, judge it, remember it, make sense of it, and talk about it with others (Patton, 2002). The researcher utilized this method to uncover the day-to-day experience as lived by these individuals, to grasp the meaning and importance of an experience in a way that has not been previously understood as the research participants explore their world.
Qualitative research, once largely discounted as a less rigorous methodology in medical arenas, has been steadily gaining respect among health researchers for decades. This is not surprising given its propensity for distinguishing the voices of individuals and communities, as well as addressing abstract concepts and providing rich contextual data that builds on what is currently known. The main purpose for utilizing a qualitative research study design was because the overarching research question was best addressed in a natural setting using exploratory approaches. The importance of context, setting, and participants’ frames of reference are essential viewpoints that must also be considered by the researcher to address a research question of this caliber. Quantitative research designs
directly attempt to influence a specific variable with the purpose of testing hypotheses about cause and effect relationship. In the case of this research study, thoughts, feelings, beliefs, values and assumptive worlds were involved; the researcher consequently needed to understand the deeper perspective that was captured through face-to-face interactions by following the qualitative approach. Incidentally, if humans are studied in a symbolically reduced, statistically aggregated fashion, there is a potential danger that conclusions, although arithmetically precise, may fail to fit reality (Berg, 2007). Coding the social world according to operational variables could potentially destroy valuable data by imposing a limited worldview on the subjects. Furthermore, for a study focused on the lived experience of Caribbean women who failed IVF treatment, human actions cannot be understood unless the meaning that they assign to them is understood.
Naturalistic inquiry occurs in the field, often over an extended period of time, investigating the quality of relationships, activities, situations, or materials. Qualitative researchers assume that society is reasonably structured and orderly; knowledge is not objective truth but is produced inter-subjectively where the researcher learns from the participants about the meaning of their lives by exploring it directly while maintaining a certain stance of neutrality (Marshall & Rossman, 2006). In addition, qualitative research constructs multiple realities and understands situations from the viewpoint of the research participants directly involved in the process. Qualitative researchers have much greater flexibility in both the strategies and the techniques they use and the overall research process itself. The designs tend to emerge during the course of the research. This form of research utilizes inductive reasoning with the researcher immersed in the process and takes the insider’s role during the investigation to better comprehend the research
participant’s experience (Creswell, 1998). Heavy emphasis is placed on understanding the holistic description of the human experience. Qualitative research therefore yields rich, in-depth information that has the potential to elucidate varied dimensions of a complicated phenomenon.
Fittingly, the aim of this study was to gain a deeper understanding and view the world via the lens of Caribbean women who failed IVF treatment. Exploring the phenomenon to understand the meaning of this experience required in-depth exploration and favored the use of qualitative research methods over a quantitative design.
Research takes different forms. Phenomena of interest may be examined from quantitative, qualitative, and triangulated methodologies. Nonetheless, some topics are better suited from one approach than others. A qualitative phenomenological study design was warranted to answer the overarching research question, “What is the lived experience of Caribbean women who failed IVF treatment?” Phenomenology as a method was generated to discover the meaning of people’s life experiences (Polit & Beck, 2004).
Topics appropriate for a phenomenological approach are those fundamental to the life experiences of humans that offer an open and luxuriant ground for inductive inquiry. This may include influences from one’s ethnicity, gender, or culture, combined with their political, social, and historical backgrounds. Phenomenology allows research participants to tell of their experiences without constraints or impediments. It illuminates meaning within the human experience and gives voices to the sometimes silent or previously hidden. According to van Manen, phenomenological research does not start or proceed in a disembodied fashion but rather as the project of someone, a real person who in the
context of a particular individual, social, and historical life circumstance, embarks on this journey to make sense of a certain aspect of human experience (1990). This phenomenological process involves maintaining detailed field notes that document events, activities, speech, and participant observation. These activities enable qualitative researchers to capture and represent the richness, texture, and depth of what they study (Rossman & Rallis, 2003). A phenomenological study describes the meaning of the lived experience for several individuals about a concept or the phenomenon (Creswell, 2007). Unceasingly, qualitative researchers try to be clear about their biases, presuppositions, and interpretations so that the stakeholders can decipher their own understanding of the information being presented.
Generally phenomenologists’ assume that there are some commonalities to the perceptions human beings have in how they interpret similar experiences. Accordingly, they seek to pinpoint, comprehend, and narrate these commonalities. This commonality of perception, referred to as the essence or the essential characteristic of the experience, is the crucial element of the phenomena that researchers want to identify and explain. This is accomplished by examining several perceptions of the phenomena as experienced by different people and then determining what is common to these perceptions and reactions. This searching for the essence of an experience is the underpinning, the defining characteristic of phenomenological research (Frankel & Wallen, 2006).
Basically, the researcher in this study sought to describe what the experience of failed IVF treatment meant for these Caribbean women who have had a potentially life altering experience and were able to provide a comprehensive description of it. The researcher also searched to find the essence, the essential structure of this single
phenomenon by interviewing, in-depth, a number of these women. The researcher’s aim was to get the research participants to relive, in their minds, the experiences they have had and extract what was considered to be relevant statements from each subject’s description of the phenomenon and then cluster these statements into themes. The researcher then attempted to identify and describe aspects of each individual’s perceptions and reactions to their experience in some detail and then integrate these themes into a narrative description of the phenomenon (Frankel & Wallen, 2006).
Phenomenology has been referred to as the science of examples.
Phenomenological descriptions are often formulated with examples that permit readers “to see” the deeper implication of the lived experience as being described (Munhall, 2007). The fundamental model for van Manen’s approach to phenomenonolgy is reflection on the textual descriptions of the experience as actually lived rather than conceptualized, or theorized. Using the phenomenological approach, according to van Manen, allows the researcher to act as an advocate in progressing human life by increasing thoughtfulness and sensitivity to situations (1990). van Manen’s approach involves the interplay of six research activities necessary to conduct human science research. They include turning to the nature of lived experience, the existential investigation, phenomenological reflection, phenomenological writing, pedagogical relation, and research balance. At the heart of every phenomenological research endeavor is a deep questioning of an experience. Turning to the nature of lived experience begins with turning to a phenomenon that is of serious interest and commits us to the world. It was from my own experience of encountering individuals affected by infertility and failed treatments that I not only began to explore my own sense of meaning from the
experience, but I began to wonder what it was like for others. These questions that sought meaning and delved into the nature of the experience beneath informed me in my own comprehension of what this meant in the life of a Caribbean woman. Phenomenological research is a being-over to some quest, a true task, a deep questioning of something that restores an original sense of what it means to be a thinker, a researcher, or a theorist (van Manen, 1990). In phenomenology, personal experience is the starting point. The researcher must be interested and invested in the phenomenon. Existential investigation implies investigating the experience as we live it rather than as we conceptualize it. One size does not fit all regarding phenomenological descriptions.
Phenomenology aims to achieve an explanation of the lived experience. This type of description is less concerned with factual accuracy and more focused on the person’s living sense of the experience. What is it like to live through an experience? Basically, have the research participant describe the experience as they lived through it, avoiding as much as possible causal explanations, generalizations, or abstract interpretation.
Phenomenological reflection entails reflecting on the essential themes that depict the phenomenon. The researcher must strive to capture the reflective thoughts of those who had the experience in order to construct a common lived experience for the phenomenon of interest. The hermeneutic significance is achieved as one reflects upon the lived experience and assigns meaning to it through this self reflection. van Manen (1990) depicts this goal as mining for meaning. In determining the universal or essential quality of a theme, our concern is to discover aspects or qualities that make a phenomenon what is and without which the phenomenon could not be what it is. This structuring of meaning with themes sets the stage for the process of “bringing speech to something, the art of
writing and rewriting” (van Manen, 1990, p. 12). Phenomenological writing describes the phenomenon through the art of writing and re-writing. According to van Manen, no single interpretation of human experience will ever exhaust the possibility of yet another complementary, or even potentially richer or deeper description. It is challenging given the writing and rewriting process as well as the bracketing required. The qualitative researcher cannot settle for superficialities and falsities. Bracketing, as described by van Manen, does not imply the need to empty the mind of all preconceived opinions or judgments but rather holding them at bay. Phenomenological writing requires that one be subjectively attentive to the silence around the words by means of which we attempt to disclose the deep meaning of the world (van Manen, 1990). Pedagogical relation implies maintaining a strong and oriented scholarly relation to the phenomenon. The focus on pedagogy in the phenomenological text grounds the research in a perspective that can inform educational practice. Research balance involves the consideration of parts and whole as they relate to the research context.
An interpretation of van Manen’s phenomenological approach was applied to investigate the lived experience of Caribbean women who failed IVF treatment and is depicted in Figure 2. Hermeneutic phenomenological research may be seen as a dynamic interplay among six research activities. Essentially, this figure represents the researcher, turning to a phenomenon that seriously interests and commits her to the world. This is followed by the researcher investigating the experience as lived while reflecting on essential themes that characterize this phenomenon of interest. Using the art of writing and re-writing, the researcher then describes while maintaining a grounded connection to this phenomenon. The researcher’s interpretations were then reviewed by the participants
to determine if the essence of the phenomenon under investigation was successfully captured.
Ensuring the whole represents the sum of its parts
(Caribbean woman living with failed IVF)
Participant interviews Experiential Data
Reference Phenomenological Litrerature
Uphold scholarly association with the phenomenon
Attentiveness to the hidden meaning
Multiple revisions to bring meaning to the lived experience
Recollective reflection on the thematic nature of this lived experience
Figure 2. (2010) Phenomenological Approach to Investigating the Lived Experience of Caribbean Women Who Failed IVF Chin, C. (adapted from van Manen, 1990).
Ethical considerations are generic as well as situation-specific. All scientific inquiry with human research participants necessarily involves ethical issues. Phenomenology is a human science that includes human participants’ in its research. This research design anticipates an array of ethical challenges that may potentially occur. Social scientists, perhaps to a greater extent than the average citizen, have an ethical obligation to science, their colleagues, study population, and the society at large. According to Lerum (2001), emotionally engaged researchers must continuously evaluate and construct their behavior. The main reason for this is that social scientists delve into the social lives of other human beings. Thus, researchers must ensure the rights, privacy, and welfare of people and communities that form the focus of their research studies.
The researcher must maintain the responsibility of informing and protecting research participants. As a result, this qualitative research study was guided by inflexible ethical guidelines to protect the rights and welfare of the research participants. Approval for this study was obtained from the Barry University’s Institutional Review Board prior to commencement of the study. Participation in this study was strictly voluntary and constructed on the premise that participants were informed about the purpose of the study, the role of the participants in the study, and how the study information will be utilized. All research participants were asked to sign an Informed Consent Form (see
Appendix B) giving the researcher the permission to interview them and use their individual as well as cumulative responses in the study.
During the initial meeting with the research participant, the purpose and process of the study was discussed by the researcher. This included detailed explanation of the informed written consent, participant rights such as the right to refuse to answer any research question, right to request audio-tape recording be turned off, or right to withdraw from the study at anytime without consequence. Permission to be interviewed was granted to the researcher through the signing of the informed consent form. If the research participant completely withdraws from the study, her information was not used in the study. Confidentiality and the participant’s right to privacy were also addressed. This research study was anonymous. To ensure confidentiality, participants were asked to select a pseudonym that was used in place of their real name throughout the study. Only these pseudonyms were used to identify the research participants. Pseudonyms were not used on the consent forms to prevent the linking of consents to research participants. The information disclosed by the research participants will be held in confidence to the extent permitted by law. However, if a research participant divulges an imminent intention to harm herself or someone else, the researcher will be duty-bounded to share this information with appropriate mental health and/or law enforcement authorities. Any participant who voices excessive or
irresolvable emotional distress as a result of the interview was referred to a community social services program that was free of charge (see Appendix C).
Signed informed consent forms were the only place where the research participants’ actual names were disclosed. These consent forms were kept in a separate, secure, and locked box in the researcher’s home office away from any other research data. All paper transcripts, documents, and field notes obtained from this research study were stored in a separate locked cabinet in the researcher’s home office. Pseudonym and audio-tape codes were stored separately from the code keys in a locked cabinet in the researcher’s home office. The audio- tape was destroyed after the accuracy of data transcription was verified and member checking occurred during the second meeting. If a second interview did not take place in a timely manner, the audio-tape was stored in a locked file cabinet in the researcher’s home office and was destroyed 90 days after the initial interview. Security of electronic documents was maintained with the use of an exclusive, password-protected personal computer at the researcher’s home office. Electronic transcripts will be deleted from the researcher’s personal computer five years after the completion of the study. All paper transcripts, documents, field notes, and consents will be destroyed by shredding five years after the completion of the study.
Research participants were informed that there will be minimal risks to them in the study and they will not directly benefit from the research process. There is the potential for emotional distress when the participant discusses her situation. Any research participant who articulated that she has experienced irresolvable emotional distress as a result of the interview was referred to a community social services program that is free of charge.
Consistent with qualitative methodology, criterion sampling was used to conduct this research study. This qualitative research sampling strategy uses a narrow range of sampling and identifies individuals who meet a predetermined criterion of importance (Patton, 2002). This method works well when all the study participants have experienced the phenomenon. In addition, snowball sampling was utilized, asking early research participants to make referrals to other potential study participants who met the specific criterion and possessed certain attributes or characteristic essential to nature of the study. This approach permits for the allocation of information-rich key informants (Patton, 2002). Employing this technique may also increase the possibility for participation by expanding awareness of the study by word of mouth.
For this study, a maximum of 20 participants will comprise the sample.
Creswell (2007) suggests sample size should range between 5 and 25 participants
in phenomenological research. Arrangements were made for the researcher and each participant to meet at a mutually agreeable time and location. The informed consent was signed at the beginning of the meeting.
Criteria for inclusion in this study was Caribbean women who self identify as having failed at least one IVF treatment in the last three years prior to initiation of the study, residing in South Florida, at least 18 years of age, able to speak and read English, and willing to speak about their experience of failed IVF treatment.
Exclusion criteria included women who do not self identify as Caribbean women who failed at least one IVF treatment in the last three years prior to initiation of study, those who do not reside in South Florida, who are less than 18 years of age, unable to effectively speak and read English, and unwilling to speak about their experience of failed IVF treatment.
Gaining access to this population was challenging because dealing with infertility issues overall is a sensitive issue. Nevertheless, several recruitment mechanisms were considered. Recruitment included placing an advertisement in the National Weekly Caribbean and local neighborhood newspapers (see Appendix D). Flyers were posted at local support group meeting sites, on the
Internet support group meeting sites and given to participants who have consented to an interview for them to distribute to those who they know might be interested in participating in the study (see Appendix E). All advertisements contained description of the study and the researcher’s contact information for interested participants, allowing participants to voluntarily initiate contact with the researcher. Interested participants contacted the researcher through a secure, confidential, and password-protected e-mail account and phone number used exclusively for this study.
The phenomenologic interview searches for depth to discover the everyday lived world of the research participant. This type of interview explores key meaningful themes in everyday language that are expressed in carefully nuanced descriptions. van Manen (1997) states that the hermeneutic phenomenological interview is used specifically as a means of investigating and collecting observed narrative material that can be used as a resource for expanding a richer and deeper understanding of the human phenomenon, and it may also be used as means to increase the discussion with participant about the meaning of the experience. van Manen (1990) suggests that participants should describe the experiences as they lived through them, rather than through an explanation or abstract interpretation. The research participant should focus on the experience itself from an emotional perspective (mood and feelings) as well as
physiologically (smells, sounds, sensation). To the greatest extent possible, the research participant should illustrate specific events or experiences free of clichés or hyperbole.
The researcher is an integral part of a phenomenological research study and participates in the study process. Essentially, the researcher is the interviewer, the listener, the observer, the recorder, and the interpreter. The researcher is the main instrument of data collection, interpretation, and written explanation (Berg, 2001). In order to better comprehend this lived experience, the researcher will interact with the participants by taking an insider’s role during the study (Creswell, 1998). It is the responsibility of the researcher to create an interview that will achieve these goals. The interview began with the researcher providing an initial review clarifying the study purpose and goal of the interview with the research participant. The interviewer used open-ended questions to direct the interview and allowed the participant to expound on their experience. In order to elicit data, the research participant was asked several prompting and clarifying questions (see Appendix F). The primary interview question was broad and open ended: “Tell me what it is like for you to be a Caribbean woman living with failed IVF treatment?” This phenomenological question explored the meaning of this specific situation to these individuals. Answering this question will enable health care providers to gain an understanding of what it is like for a Caribbean woman to live with failed IVF treatment. Uncovering the meaning behind this lived
experience may assist healthcare providers in developing strategies to assist those at risk for vulnerability and impaired health.
A demographic designed questionnaire was used at the beginning of the interview to obtain data about each research participant. Research participants were asked to provide information about their age, ethnicity, educational background, profession or occupation, current living arrangements and marital status, number of children if any, length of time trying IVF treatments and the total number of attempts with IVF (see Appendix G). These data assisted the researcher in understanding the situational context of the phenomenon for each participant, identifying commonalities, and describing the research participants. The researcher believed that providing additional demographic data enhanced the findings of this study by offering a clearer detailed prospective of this phenomenon.
Data collection procedures were initiated upon the approval of the Barry University Institutional Review Board. The qualified applicants were thoroughly notified of their rights as research participants. Instructions were given to each participant on the purpose of the study, and they were asked to sign an Informed Consent Form to participate in this research study. Participants were asked to
select a pseudonym that was used throughout the investigation instead of their actual names.
The method of data collection selected for this research approach involved an initial face-to-face, semi-structured interview with open-ended questions. This is deemed to be appropriate to the phenomenological approach being used because it provided a means by which participants could tell their stories, in their own words. An advantage of the semi-structured interview is that it allows for the tailoring of questions by the interviewer. This was conducive to the aim of this study, as well as the methodology chosen. The inherent flexibility in the semi- structured interview format enables the researcher to pursue new and potentially innovative lines of inquiry, which may be prompted by what the participants disclose.
The first interview lasted approximately one hour (see Appendix H: Interview Protocol) and was recorded on audiotape to ensure verbatim transcription. This was conducted in a private and mutually agreed upon neutral location. The researcher obtained clarifications to understand concepts being expressed by the participant. The researcher also focused on being a listener and avoided personal opinions interjected during the process (Creswell, 1998). The researcher used two audio-tape recorders during each interview process in case of
equipment failure. Participants received a $25 department store gift card as a token of appreciation after the conclusion of the initial interview.
Upon completion of the initial interview, the researcher immediately documented notes with emphasis on the research participant’s non-verbal gestures, verbal prominence, and overall disposition during the course of the interview. Post-interview introspection was documented in the researcher’s journal. These notes augmented the transcription process. The audiotape was immediately transcribed by the researcher. Transcripts were reviewed line by line with the audiotape to ensure accuracy. After completion of the initial interview, transcription, and initial data analysis, the research participant was contacted to schedule a second meeting for approximately one hour. The second meeting was not audiotape recorded. The goal of this second meeting was to have the research participant review transcripts and examine the themes identified by the researcher to elucidate the participant’s description of their lived experience. The audiotapes were destroyed immediately after the accuracy of data transcription had been confirmed by the researcher. If for any reason the second meeting did not occur, the audiotape was stored in a locked cabinet in the researcher home office and was destroyed 90 days after the initial interview.
Data analysis is the systematic organization and synthesis of research data.
Qualitative researchers typically scrutinize their data over and over again in search for meaning and deeper understanding. This process essentially requires the researcher to define, organize, compare, reflect, connect, and combine data from the interviews to extract the meaning and reveal the patterns, which are developed into themes to create the essence of the phenomenon under investigation.
In this research study, the researcher personally conducted each interview, followed by transcription and analysis prior to subsequent interviews. Utilizing this process permitted the identification of salient themes, recurring ideas or language, or possible superfluous information as well as assess for data saturation. Essentially, the researcher became intimately familiar with the data by rereading the interview transcript several times. Notes and memos on the researcher’s reflective journal were scrutinized as they relate to the transcribed interview. The researcher formulated an inventory of meaningful statements that was color- coded. These statements consist of words, phrases, or expressions that appear fundamentally essential or reveal information about the phenomenon being described. Upon revision of the data in detail, the researcher explained, classified, and deciphered emerging commonalities to formulate themes. The researcher attempted to construct a universal description of the experience. The findings
were situated within the context of the literature to identify implications to nursing science and nursing education and potentially improve practice by increasing nurses’ capacity for care and compassion in nursing practice and for public policy development. This may also potentially raise nurses’ consciousness to what is not known or otherwise erroneous.
In this research study, the researcher followed the tradition of qualitative analysis, ensuring rigor and trustworthiness was undertaken throughout the data analysis process. To accomplish this, the researcher began with the utilization of bracketing as well as venture to suspend judgments via the identification of preconceived notions and personal biases. To maintain an undogmatic view point, reflective journaling was employed to assist the researcher in bracketing these preconceived ideas and feelings. Next, documentation of the study was described in scrupulous detail. To ensure auditability and confirmability, the activities of the researcher were recorded precisely. Finally, procedural and analytical rigor were achieved following meticulous adherence to research participant screening eligibility criteria as well as utilizing the same interview questions with the same standardized format and recording tool.
All research must respond to certain canons of quality against which the trustworthiness of the project can be evaluated. Trustworthiness was developed in
response to validate constructivist rigor in research much in the same way traditional positivist research can be validated. It was created to replace the old principles used to appraise the credibility of knowledge and was founded on the need to justify the authenticity of alternative research methods. Qualitative researchers are eager to have data reflect the true state of human experience. Qualitative researchers are intrigued by the complexities of social interactions expressed in daily life along with the meanings participants themselves attribute to these interactions. These interests take the researcher into natural settings as opposed to laboratories to explore diverse topics that are difficult to measure. The criteria currently referred to as the gold standard for establishing the trustworthiness of qualitative data are those outlined by Lincoln and Guba (1985). They include credibility, dependability, confirmability, and transferability.
Credibility refers to confidence that the data and its interpretation are true.
Its goal is to enhance the believability of the findings and take steps to demonstrate credibility to consumers. These findings that reveal the complexities of the research process as well as the interactions will be so embedded with data derived from the setting that it convinces the readers. In qualitative research data quality needs to reflect the true state of the human experience. It is the data quality that is at the center of whether the data reflects the truth. Important steps in achieving credibility include prolonged engagement and participant observation
where the researcher focuses and commits sufficient time collecting data to have a comprehensive awareness of the culture, language, or views of the participants being studied and to test for misinformation and misinterpretation. The most important step in establishing credibility of qualitative data is member check.
Participants were given a copy of their transcript to provide critical feedback regarding the truthfulness of the data that was translated from the audiotape. If the research participant found any interpretative errors or inadequacies, they were corrected. In addition, analyzed data was reviewed with the committee who are content and method experts. This step confirms an evaluation of the investigative process, thereby ensuring credibility.
Dependability refers to the stability of the data over time and over condition. Researchers should be able to follow the investigator’s decision throughout the study and come to similar conclusions. This is feasible when the researcher maintains an audit trail documenting the development of the study that will furnish an adequate amount of evidence to stakeholders interested in reconstructing the process. Information regarding the phenomenon of Caribbean women who failed IVF treatment, sampling procedures, and data collection procedures will be described in detail. Recounting these steps as explicit as possible will leave an audit trail for interested parties to pursue. This will
empower the individual to read and evaluate the methods and determine if the study is workable.
Confirmability refers to the objectivity or neutrality of the data. In a phenomenological study, bracketing and maintaining a reflexive journal are substantial methods to enhance confirmability. The researcher set aside any personal experience or preconceived ideas regarding failed infertility treatment and maintained a journal to ensure authenticity. The main function of the continuous reflective journal was to sanction an understanding of the unique experience of having failed IVF treatment from study participants. This also served as a process of sorting out the researcher’s feelings and experiences in order to separate them from those of the participants. Reviewing the analyzed data with the participants and the dissertation committee members who are experts in the field of study would also mitigate the effects of researcher bias. These steps were taken throughout the process, particularly prior to interviewing and data analysis.
Transferability refers to the generalizability of the data or to what extent the findings can be transferred to other settings or groups. The most effective method for promoting transferability is for the researcher to specifically outline
their research process for subsequent researchers. It is essential for the researcher to present sufficient descriptive data in the research report so that readers can evaluate the appropriateness of the data to other contexts. The researcher accomplishes this by providing thick, rich, detailed descriptions so that someone interested in making a transfer or reaching a conclusion can do so. Presentation of results and collaborations with experts in the field of study was used to promote transferability to others in similar situations and subsequently contribute to the identified gap in the body of nursing knowledge.
This chapter presented a detailed description of the research methods and design using phenomenology to explore the lived experience of Caribbean women who failed IVF treatment. The phenomenological principles outlined by van Manen were discussed and used as guidelines to bring meaning to the phenomena of interest. Ethical standards and research methods including sample, data collection and data analysis procedures were outlined. Finally, the standards of quality verification to ensure trustworthiness and rigor were discussed in detail.
Chapter Four provides an explanation of the research findings.
This chapter delineates the notable findings of this phenomenological inquiry into the lives of Caribbean women following failed IVF treatment. A composite demographic representation including individual specifications of the 12 research participants are presented. The essence of the participants’ life worlds, thoughts, feelings, and descriptions were elucidated. Data analysis sequences related and overarching themes that epitomizes the totality of these women’s lived experience were re-counted. Finally, a summation of the predominant findings ascertained through exploratory conversations with the participants was disclosed.
The intent of this research study was to gain a perspective view of the very nature of the participants’ lived experiences by looking through the lens of each individual and accepting their spoken word. While the aim of phenomenological inquiry is to uncover the meaning of the experience, Munhall (2007) encourages the researcher to allow “each participant to stand alone” (p. 151). Consequently, the individuality of the participants was regarded by providing a brief description of each one. Through the personal stories of these participants, the researcher was able to explain, decipher, and convey the meaning of living with failed IVF treatment. The phenomenological framework of van Manen (1990) directed this qualitative inquiry and guided the researcher to unmask the meaning structures
and provide intricate details of this phenomenon in the lives of these women affected by failed IVF treatment.
Unlike any other kind of research, phenomenological research fabricates a distinction between appearance and essence, the things of our experience and that which grounds the things of our experience (van Manen, 1990). This type of research personally transforms the researcher. Becoming “phenomenologic” allows the researcher to have a deeper understanding of human relationships (Munhall, 2007). It trains the researcher to not only hear the explicit with meaning but also guides one to consider the implicit. The phenomenologist questions everything to grasp the essence. “Phenomenological description is characterized by inspirational insight won through reflective writing… The task is to bring to speech ones understanding of a phenomenon achieved through vigorous reflection” (van Manen, 1990, p. 10).
Correspondingly, van Manen’s (1990) six research activities served as the main guide for data collection and analysis. This researcher sought to embrace the internal structures of the experience following failed IVF treatment in accordance with the hermeneutic process. The essence of the researcher’s interest in this phenomenon was instituted with a sense of rumination, supported by a watchful eye that remained open to all emerging possibilities as they surfaced or as they are camouflaged. This process stimulated the researcher’s senses to be engrossed to
the appearance of the phenomenon in whatever form it took. The hermeneutic significance is achieved as the researcher reflects upon the lived experience and assigns meaning through self reflection. The researcher remained engaged with the participant during this process of discovery.
To launch the foundation of this inquiry, the researcher used personal experiences from Caribbean women who failed IVF treatment by obtaining intensely personal and deeply compelling narratives. The researcher entered the data collection process with an open mind, ready to hear what participants were describing about their experience with failed IVF treatment. Data collection involved a face-to-face, undisturbed conversational interview, conducted in an intimate and private environment. This afforded the researcher the opportunity to build a collaborative relationship with the participants about the meaning of the phenomenon.
The participants used their stories to describe their lives after failed IVF treatment. The narratives are authentic and true to the women’s experiences, allowing the researcher to fully comprehend the multidimensional perspectives of their everyday existence. The women allowed the researcher to see through their lenses and hear from their voices, what it is like for them to live with failed IVF treatment. Data collection and analysis continued until ideas or language became recurring and repetitive. The researcher cogitated on the obtained data, and
essential themes emerged. A final synthesis of the material into a whole narrative text followed.
The interviews were audio-tape recorded and transcribed verbatim by the researcher. The researcher listened and re-listened, reviewed, and deliberated numerous times each participant’s story until the researcher was certain that the data was accurate and complete. Reflecting on the participants overall affect, facial expressions, emotions, voice inflections, and non-verbal cues during the interview provided the researcher with an opportunity to extract the meanings that may be concealed by the inadequacy of spoken words to describe an experience. This enabled the researcher to become intimately familiar with the data. Post interview thoughts, opinions, and reflections were recorded in the researcher’s journal. This journal provided an outlet so as not to interfere with the process of data collection or analysis. These reflections focused on the non-verbal cues, body language, facial expressions, verbal emphasis, and overall affect of the participants during the interview.
The researcher started the phenomenological reflection with silence, letting the question of how Caribbean women see their lives with failed IVF treatment take residence within. This process demanded a heightened awareness of the data, a focused attention to those data, and an openness to the subtle, tacit undercurrents of the phenomenon under investigation. Through questioning the
data and reflecting on the phenomenological method, the researcher engaged the ideas and the data in significant intellectual work. It was pivotal for the researcher to remain open-minded and maintain a sense of openness to different variations and appearances of the phenomenon whenever and wherever they emerged. The researcher cogitated on the participants’ unique experiences through self- reflection and suspension of presuppositions and biases by writing and rewriting comments in the margins of the transcribed narrative texts. The researcher began to gradually grasp the experience and uncover the essences of the phenomenon, universally interwoven with life in general. Phenomenological researchers strive to capture the reflective thoughts of those who had the experience in order to construct a common lived experience for the phenomenon of interest. van Manen (1990) depicts this goal as “mining for meaning” (p. 38). The phrase “mine for meaning” describes the time and care taken by the qualitative researcher to listen, reflect, read, write, and re-write until tentative themes begins to emerge as reported in the words of the research participants.
Each successive interview rendered new data. The researcher compared each finding to the existing data, with an attempt to locate commonalities and differences. Comparisons were accomplished mentally and visually via phenomenological grids constructed by the researcher. This allowed the researcher to view a participant’s expressed descriptions and interpreted meanings alongside others. This also provided a perspective of both the universal and
singular essences ascribed to the experience. The researcher had no intention to generalize, as this was not the purpose of the study. The dissimilarities and complexities that appear throughout the study were embraced. This researcher heeded the suggestion of van Manen (1990) as he described phenomenology as “one interpretation, and no single interpretation of human experience will ever exhaust the possibility of yet another complementary, or even potentially richer and deeper description” (p. 131). What mattered was thematic resonance, where the descriptions and essences were familiar and possible for someone else.
This process involved a circular movement that attempted to deeply expound the core meaning of the phenomenon (see Figure 2). The researcher had to be a thoughtful listener to what was said and not said and resourceful. Over a four-month period, the researcher resided with all the data collected and reflected on emerging themes to engage in a phenomenological writing. Breadth in qualitative inquiry is enhanced by the researcher’s attention to multiple perspectives and vantage points in relation to the area of inquiry. This process enabled the researcher to identify salient grounded categories of meaning held by participants in this setting. Numerous initial abstractions were completed by the researcher. Resemblances and differences regarding the lived experience of the phenomenon became apparent. Multiple readings, reflection, and re-writing were performed to derive the true essence of living with failed IVF treatment for the Caribbean woman. This led to a natural and logical reduction of the data
culminating into an overarching theme and related subthemes that represent the experience within the women’s cultural context.
The composition of a phenomenological text was informed by the researcher dwelling on the question, “What is it like for the Caribbean woman to live with failed IVF treatment?” The researcher engaged in uninterrupted time blocks of deep phenomenological reflection and writing. This included activities of contemplation and dialogue with dissertation committee members. The researcher worked closely with mentors, all experts in qualitative research to ensure the researcher was adequately bracketing, prior to, during, and after data collection and the data analysis process. This yielded correlations made to different literary art forms and film.
The transcribed narrative text and essential descriptions ascribed to the experience were shared with the interview participants during a second meeting for member checking to ensure accuracy. All the participants were given an opportunity to review their transcript, make changes, and clarify the researcher’s interpretation of the narrative. This follow-up process served as a phenomenological nod (van Manen, 1997). The “phenomenological nod” is described by van Manen (1997) as the point where the reader of phenomenological text as it were, “nods in agreement with the essence of the lived experience as described from within the life world of others” (p. 36). After
the tenth interview and meeting sequence, no new data was discernable, suggesting to the researcher that saturation was achieved through data redundancy. Nevertheless, two additional participants were interviewed to confirm that saturation occurred. By the completion of the study, a total of 12 women participated.
The related themes of disintegrating, disheartening, perpetuating, and guarding emerged as a total representation of the Caribbean women’s life with failed IVF treatment. The labeling of these themes was an artistic interpretation ascribed by the researcher. This is consistent with van Manen’s (1997) approach, which suggests: “The object of human science research is essentially a linguistic project: to make some aspect of our lived world, of our lived experience, reflectively understandable and intelligible….it is to construct an animating, evocative description (text) of human actions, behaviors, intentions and experiences as we meet them in the life world” (p. 125).
This study included 12 Caribbean women who failed at least one IVF treatment within the last three years. The three initial participants were obtained via physician office referral, four participants via recruitment flyer, and snowball sampling resulted in the other five participants. These women all resided within the state of Florida in the following counties: Munroe, Dade, Broward, Palm
Beach, Brevard, and Orange County. They varied in age, ranging from 34-42 with a mean age of 37 years. The participants’ ethnic backgrounds and cultural heritage are reflected by six Jamaicans, four Haitians, one Cuban, and one Dominican.
The research participants’ educational levels ranged from associate degree to Master’s degree, including 10 participants with a background in nursing and 2 participants with a background in pharmacy. Research participants’ were employed in various positions encompassing pharmacy, bedside nursing, and nurses in academia, advanced registered nursing practice, and anesthesia. Their current living arrangements and marital status were reflected with seven participants being married, living together as couples and five participants who were divorced and living alone. They all had no biological or adopted children and no current plan of pursing the adoption process.
All the participants recounted living with infertility for quite a number of years. The length of time spent pursuing IVF treatment ranged between one and five years, with a mean of two years and six months of actively pursuing treatment. The total number of attempts with IVF treatment varied among the research participants, five participants completed one treatment cycle, four participants completed two treatment cycles, and three participants completed three treatment cycles. The participants who completed one treatment cycle were
all failed cycles. The participants who completed two treatment cycles each had one successful cycle that resulted in miscarriages and the second cycle failed. The participants who completed three treatment cycles each had two successful cycles that resulted in miscarriages and the third cycle failed.
In order to express the true essence of the research participants’ experiences, it was important to describe each participant in detail. To facilitate this, each participant was initially assigned a self-selected pseudonym that in no way represented her true identity. This pseudonym was utilized throughout the study. The following characterization of the participants taken from the narrative interviews provides a milieu of their reflections, ideals, and lived experiences.
The participants are introduced using their self-identified pseudonyms to maintain confidentiality. The interactions between the researcher and the participant were productive, purposeful, and quite persuasive. The women were passionate and reflective when queried about their lives with failed IVF treatment.
Tinkerbelle is a 34-year-old Cuban female who was diagnosed with unexplained infertility. During the interview, she still remembered so clearly the pain she went through when she failed IVF treatment in March 2008. She further explained, “All my friends around me fell pregnant, none of them went through
what I did and because of that they did not understand my frustration, pain, and longing.” She reported having completed only this failed IVF treatment cycle.
She is a college graduate with a Master of Science degree in Nursing Education and is currently working in nursing academia. She is married with no children. Tinkerbelle feels that people from her culture do not really want to talk about infertility problems’ it’s “a hush-hush situation”. She relays to the researcher how difficult the IVF process was for her because she never really had anyone that really understood what she was going through. She hopes her story will give women who failed IVF treatment a bit of hope while seeking motherhood.
Isabella is a 36-year-old Haitian female who was diagnosed at an early age with Polycystic Ovarian Syndrome. This resulted in years of having irregular menses, which ultimately contributed to the main source of her infertility problems. Isabella dreamed as a young girl of having a family; she loved playing with dolls and being their mother because she knew one day she would have her own family. She further explained that all her life she was raised with a lot of children, including siblings, cousins, and even some adopted children.
She is a college graduate with a Master’s degree in Nursing Education, and is currently employed as a nursing professor at a local university. She reports
being married for 14 years with no children. It was impossible for her to conceive after the first three years of marriage, and then suddenly after five years, she became pregnant but miscarried at four weeks. After several more years without any conception, she tried IVF treatment in 2006, which was successful but resulted in miscarriage at 21 weeks. She then tried IVF a second attempt in 2008, which failed. She reports that her husband then obtained a child outside of marriage, which is causing her marriage to fall apart. She reports her desire to start a social network for others like herself facing this dilemma.
Queen B is a 35-year-old Jamaican female. She is a college graduate with a Bachelor of Science degree in Nursing and currently works at a local hospital. She is married and has no children. Queen B is very energetic and vivacious and takes pride in being female. She reports, “To me, it’s a privilege being a woman; there is nothing more satisfying and I appreciate the notion of being honored and cherished for my femininity; this is the very essence of being a woman.” “Furthermore, the children we women bring into this world are small replicas of ourselves and our husbands, the pride and joy of grandparents.”
She was diagnosed with Cervical Stenosis, the source of her infertility issues. Queen B explains, that when she realized that something was wrong, she sought professional help and that still failed. Her dream was shattered and the
headaches remain quite painful and almost unbearable. She reports questioning herself, “What is wrong with me…. what am I lacking…. what did I do to deserve this?” The questions are still desperately being asked, but still there are no answers. Slowly, her conviction grows that her entirety as a woman will forever remain incomplete because she attempted IVF in 2007, according to her, “as a last resort,” which resulted in a successful pregnancy but miscarried at 20 weeks. The second attempt in 2010 failed, and life has never been the same.
Bubbles is a 37-year-old female from the Dominican Republic who holds a Master’s degree in Nursing, Nurse Anesthetist, and currently works at a local hospital. She is married with no children. She reports having a tough battle with infertility especially after having her first attempt with IVF treatment in 2007 being successful but miscarried after 8 weeks and the second attempt completely failing in 2009.
She refers to her situation as being unfair. She values the gift of being able to carry a child and becoming a mother but explains how she and her husband got so angry at her younger sister when she announced she was having her fifth child. She explains “It took everything out of me to go the hospital to see my sister after this delivery, especially the ‘newborn who was my niece’. She explained further how she would become even more upset and angry when her
sister with five children would sympathize with her because there was no way she could relate, especially after having several children without any difficulty. She reports that she has been saving the unused bedroom for a nursery and collecting advice on toilet training. Eventually, she was diagnosed with Premature Menopause, a complete roadblock in her path to achieve motherhood.
Nico is a 38-year-old Haitian female who is currently divorced but was married for 14 years with no children. She had an ectopic pregnancy after five years of marriage then sought infertility treatment with no conception for another five years. She was diagnosed with having multiple Uterine Fibroids, for which she received surgery in an effort to make her body more fertile. She had one successful IVF treatment that resulted in pregnancy with twins in 2007 but lost them at 21 weeks of pregnancy. She attempted another IVF treatment but failed in 2009.
“The desire of my heart is to have kids” are the words of this college graduate who has earned her Bachelor of Science degree in Nursing. She currently works at a local hospital. “My body failed; I have an incompetent cervix, but still my people expect that you must have children; children are given by God.” She reports that IVF treatments placed so much strain on her marriage and now she is all alone.
Fifi is a 35-year-old Haitian female who is married with no children. She earned her Pharm D and currently practices at a local pharmacy. She was diagnosed with Polycystic Ovarian Syndrome at an early age, which is the reason for her infertility dilemma. Fifi reports buying infant clothes since she was 17 years of age and dreaded that she would have an infertility problem. She reported having attempted IVF treatment in 2008, which failed, and has discontinued any further treatments due to financial and emotional concerns.
Fifi reports that the news of her failed IVF was devastating. She always dreamed of giving birth to her own child. In fact, she related this dream to being similar to a young girl’s common dream of her wedding day. She discussed withdrawing from baby showers and events that involved pregnant women from time to time so she would not have to dwell on her lost dreams.
Ebony is a 36-year-old Jamaican female with a Master’s degree in Nursing Education. She is the dean of nursing at a local community college. She is currently divorced after being married for 12 years. Ebony blames her problems with infertility as the main source for her failed marriage. She reported having problems with endometriosis, for which she had multiple surgeries in the hopes of conceiving. Being from a large family of fertile females, Ebony explained, “I
thought getting pregnant would be a piece of cake.” After trying several infertility treatments without any success, she turned to IVF treatment as a last resort because her biological clock was ticking. She attempted one cycle of IVF treatment in 2008, which failed. “My life has never been the same; it’s like being on an emotional rollercoaster ride that ended with permanent injury.”
Sista is a 37-year-old Jamaican female who is married with no children. She was diagnosed with unexplained infertility and multiple uterine polyps. She attempted one IVF cycle in 2008, which failed, and is only a few weeks away from beginning treatment for another IVF cycle. During the interview, she reported that she was only a few days in the post-operative phase post polypectomy, which was done in preparation for the upcoming cycle. She also shared with the researcher actual photos of the polyps removed. She reported being in a hurry to get pregnant because she was diagnosed with Multiple Sclerosis in 2002.
Sista feels she came from a great mom and wanted to carry on this legacy. She explains how many nieces and nephews she has and just wants her own child to be a part of this family tree. She further explains, “Society looks at you negative; some people may even look at you as if you did something in your younger life; people just don’t understand that something physiologic may be
going on inside, and you have no control over this.” She reports that she will start a “Sista Movement” to support females with infertility problems once she gets through this cycle.
HunnyBun is a 40-year-old Haitian female who reports having multiple treatments to conceive because of her longstanding problems with endometriosis. She reported having a total of three IVF treatment cycles; two of which were successful in 2005 and 2007, respectively, but resulted in miscarriages, and one cycle that failed in 2009. She explained that each of these losses registered deep inside her core.
A college graduate with a Master’s degree in Nursing, she currently works as professor at a local university. She is currently divorced but was married twice. During the interview, she kept mentioning “Infertility is an issue for two people, not one; coping with these losses can either strengthen your bond with your partner or destroy it, and destruction is what happened to mine.” HunnyBun also explained how she became sick and tired of the well-intentioned but potentially upsetting questions that continually come from family members and friends. In order for her to not be consumed by this, she sets up boundaries to protect herself.
Sweet Pea is a 42-year-old Jamaican female who considers her battles with infertility as her personal journey to “hell and back.” From her shocking diagnoses of unexplained infertility then premature menopause, to the demanding IVF treatments and the emotional assaults while being guilt ridden, she reported feeling out of control, out of place, and out of luck. A college graduate who considers herself a successful pharmacist, she reported having a total of three IVF cycles of which two were successful but resulted in miscarriages in 2005 and 2008, and her final cycle in 2009 that failed.
She is currently divorced but reported being married for 20 years with no children. Sweet Pea comments about her beautiful home longing for a child’s laughter. She has 11 siblings and many nieces and nephews. She has tried the adoption process on two separate occasions, but in both instances, the mother wanted to keep her child after the delivery. Sweet Pea reported having lost her obsession with motherhood.
Empress is a 38-year-old Jamaican female who is a college graduate with a Master’s Degree in Nursing. She currently works as Nurse Practitioner in a migrant clinic. She is divorced with no children after 15 years of marriage. She reports being diagnosed with an incompetent cervix after having three cycles of
IVF treatments, two of which were successful with twins in 2005 and 2008 but resulted in miscarriages at 20 and 22 weeks, respectively and one that failed in 2009.
Empress explained that the only place she felt normal was at the infertility clinic, where everyone was like her…they were all infertile. She also told everyone that she could about her miscarriages so people would know she had been pregnant and is a normal … whole woman. Empress explained that her reasoning for this was that she did not want to bear the cultural burdens of failing to do what most women can and are expected to do, especially coming from a Caribbean heritage.
Dee is a 36-year-old Jamaican female who is married with no children. Currently, she reports that she and her spouse are contented living their lives without any children because they were in the process of adopting their spouse’s cousin, a newborn, when the mother withdrew her decision at the last minute. Dee had been diagnosed since her teenage years with a hormone imbalance and PCOS, which ultimately has contributed to her infertility problems, and now has premature menopause.
She is a college graduate with an Associate degree in Nursing and currently works at a local hospital as a Nursing Supervisor. She reported having
one IVF treatment cycle that failed in 2009. Dee reported “I was totally, totally, devastated; my faith was shaken.” She further explains that now if she visits the doctor and is questioned if she had ever been pregnant she feels a little bit ashamed even though she is not the guilty of anything that would cause her infertility.
These 12 individuals shared the gift of their time and experience with the researcher during their interviews and follow-up discussions. Their powerful and intensely personal descriptions are essential to describing the essence of the experience following failed IVF treatment.
The complex phenomenon of life following failed IVF treatment for the Caribbean woman was elucidated by the compelling, rich descriptions of the experiences articulated by the 12 research participants in this study. This thematic analysis surfaced from multiple readings of the narratives, repeatedly listening to their voices, ruminating on the distinctiveness of their expressions, and recalling their moods and demeanor. Careful analysis of the data led to the materialization of four essential themes. They include disintegrating, disheartening, perpetuating, and guarding. These four themes expressively unclothed the lived experiences of these Caribbean women following failed IVF treatment.
Exhaustively, these themes illustrated the research participants’ experiences and interconnections with the day-to-day human relationships as well as the existential life worlds of space, body, and time as they live with this dilemma. Figure 3 is the researcher’s conceptual representation of the lived experience of Caribbean women who failed IVF treatment as delineated by the participants in this study. The interrelated themes of disintegrating, disheartening, perpetuating, and guarding transpired through this phenomenological investigation. The exemplar research participant’s responses connected to these themes are interwoven narratives depicting the crux of the themes. Rather than a linear process characterized by sequential phases, the experience presented is one of shifting vantage points, where one theme does not lessen the importance of the other; in fact, each diagram effectuates the totality of the phenomenon as it is lived.
Figure 3. Chin’s (2006) conceptual representation of the lived experience of Caribbean women who failed IVF treatment.
The first theme evident in the data was disintegrating. Disintegrating is an adjective that describes undergoing a change in composition, destroying the unity or integrity of, by breaking into parts (Merriam-Webster Dictionary, 1996). This theme essentially captures the nature of each woman’s profound sense of feeling like their entire body was collapsing; their whole world was crumbling as a result of failing IVF treatment. In addition, they each commented on feeling appalled, blown away, and distraught even further over the financial deficit they will have to overcome. Isabella’s opening comment to the interview personified this theme with her sharing,
It’s like I’m worth nothing anymore …I really kind of feel like part of me has either died or given up after failing the IVF treatment
process. I guess the thing that has bothered me the most is the kind of emptiness you feel. There is this hollowness, desolateness about your life, having no purpose and no meaning. It’s like you thought you were this solid chocolate bunny and you’re not. You’re the hollow chocolate bunny, which is the less expensive version, not quite as good and not what everybody really wanted at Easter time.
One by one, these women described how hearing the words, “your IVF treatment failed,” threw them into a state of shock and disbelief. This state of quandary for
many was reportedly unbearable. According to these women, this failure signified a life-defining loss that would incur intense suffering and missed opportunities.
Consequently, they reported being haunted by multiple questions and surfacing thoughts, which brought on intense feelings of nervousness, helplessness, hopelessness, and increased anxiety, making their dilemma even more devastating. Examples of these questions and thoughts included,
What will I tell my spouse, will he understand, will he leave me this
time or the next time, how do I go on, my biological clock is ticking, time is running out on me, will I be able to try another IVF cycle, where do I go from here, what will I say to my family, what will my family say about me, how will society judge me as a woman?
These research participants reported feeling fragmented and damaged and equated their lives as being in a state of disunity as a consequence of failing IVF treatment. Bubbles expressed that not only was an element of the body damaged but the entire self too. She communicated,
I am a diseased woman, IVF failure has changed who I am. I still feel like: ‘Where am I? Where am I going? Where am I supposed to be?’ If God hasn’t chosen me to be a mother, what is my purpose, what is my function? That is my biggest question. What am I doing here? Why have I been put on this earth?
Likewise, Nico talked about feeling a sense of disruption,
I am so worn down from all of this and now where do I go from here after two IVF cycles that did not work? What good am I to anyone when my life and my body are in shambles? No wonder I ended up with a divorce.
Tinkerbelle tearfully recalled, “I feel so destroyed. I’m like a broken tool that no one seems to be able to fix, especially with a diagnosis of unexplained infertility.” Sista echoed,
It’s like I was in a hormonal shock phase. One minute you’re high, you’re low, you’re down, and you feel like your emotions are playing with
you while going through treatment, and it’s not something you can share with the average person. Then comes failure and everything just comes crushing down on you.
Most women expressed feelings of being defective, incapable, and incomplete as a woman, after failing their IVF treatment. Experiencing ambivalent images of the self, research participants reported feeling this existential void. For Queen B, it was, “I’m a total failure,” and for Sweet Pea, it was “I am childless despite all the labor intensive stuff I had to go through.” Dee recalled, “I was upset and it was more confusing than anything because they
really didn’t have a real diagnosis. Not having the diagnosis made me feel more discombobulated and out of luck.” Nico conveyed,
I have never felt completely whole … something just always seem to be missing from my life and the part that hurts the most about this is I know what missing. My heart is missing the child I don’t have, waking up from my sleep at nights … hearing my baby crying…wanting to hush that little child of mine.
Ebony poignantly spoke of feeling as though she had to bear the burden at all times,
I was the one who had to remember the doctor appointments, I was the one who had to keep track of the medication regimens, I was the one who had to endure the bodily probing, the side effects of the medications, countless procedures, and I was the one who was constantly reminded that my body could not deliver. It makes me angry that I have to search for something. I want to be a mom; why do I have to find something else to replace that?
Research participants described how fearful they were of being called, mule, barren, sterile, fruitless, or cursed. In other words, they revealed to the researcher that they did not want to be associated with the term “have no bearing.” Earning
this title would further prevent one from picking up the pieces and moving as conveyed by all these research participants. Nico related, “They will think something is wrong with me and question why I have not produced a child since I have been married for a while and especially in my family everyone gets pregnant easily.” HunnyBun remembers questioning herself, “What is wrong with me? Is it my fault? What am I lacking?” Many of the women echoed these same questions, but there were no answers, and as a result, they felt that everything was just falling apart for which they had no control over. Slowly their conviction grew, as they shared with the researcher, that their entirety as a woman would be incomplete.
These research participants clearly delineated in their voices the feelings of disintegrating once the news of failed IVF was given. For these participants, IVF treatment was a last resort in achieving the dream of motherhood. Failing IVF clearly made these women feel like everything around them was crumbling. Their bodies had failed and their hopes, dreams, and opportunities destroyed.
These research participants voiced great concerns as to whether they would be able to put their lives back together after failing their last hope of having a child.
The second theme that became evident in the data was disheartening.
Disheartening is defined as to cause to lose spirit (Merriam-Webster Dictionary,
1996). According to these research participants, failing IVF treatment left them with a broken spirit, one that was crippled, crushed, wounded, maimed, or emotionally scarred. From the researcher’s perspective, all of these descriptions denote some form or type of anguish. Furthermore, wounded spirits often have negative attitudes, opinions, and a pessimistic outlook on life in general.
The theme disheartening revolves around the research participants’ failed IVF treatment affecting their sense of self and emotional well-being. These research participants typically recalled entering their marriages with the presumption of attaining motherhood. As for Isabella, she recounted, “No one ever assumes they cannot have children, and failing IVF just robbed my soul of the joy that comes from having a child.” Isabella’s faith along with many others was badly shaken. She expressed the following words,
I was very, very angry at God. My faith was really challenged because I am a God-fearing woman, a minister at that, and I do go to my church religiously every time to praise him for his goodness even more. So for me it was really difficult to comprehend why my God couldn’t just let this all come through for me.
This theme of disheartening was markedly articulated when the participants continually referenced failing IVF treatment as a deep loss that registered inside
their core, leading to the development of poor self-esteem, increased social isolation, anxiety, and depression. For instance, Isabella remarked,
My life has never been the same after failing IVF. I have just lost the strength and the will power to go on. The desire is just not there for me anymore to do the things that I used to love doing, like shopping, cooking and entertaining friends.
Sista recounted, “I was totally, totally devastated, because I did get a positive pregnancy test result at home but according to my doctor I had failed my IVF treatment process.” Tinkerbelle recalled experiencing similar sentiments of high joy then complete devastation because of the same false positive results. Nico recalled, “I was so discouraged and still very much discourage. Failing IVF has taken the joy out of living, and majority of the time I feel so depressed like I just can’t go on.” Empress tearfully expressed, “I feel broken inside and out. How do I go on?” She took out a piece of paper and shared the following poem,
I sit here and wonder, Is it ever to be? Will I get to display the mother in me? Wonder in time how the story will end,
Will they just be for others, the showers I attend?
When’s it my turn, I asked God each day, The only answer I get is, “Not today.”
I ask only to know, what my future might be, To plan and prepare God, please tell me.
I just need to know, how long to be strong,
For sometimes I question my own strength to go on. I sit here and wonder is it ever to be?
Will I get to display the mother in me?
(Azelene Williams, 2009)
Bubbles recalled searching for her splintered spirit in the room she had been saving for what is now termed “the fantasy child.” Through further inquiry on the meaning of “fantasy child,” Bubbles broke it down further so the researcher could comprehend even more,
I have been destitute for this fantasy child, the child who is coming but there is a short delay in their arrival. Nevertheless, the nursery is just about completed, the name has been selected, and even more exciting the first birthday party invitations have already being bought.
Several of the other participants echoed these same sentiments by lamenting to the researcher about their broken hearts and weakened spirits.
Suffering from a broken spirit, the majority of these women reported a sense of feeling inadequate as woman. They explained how their role as a woman defined by their society and respective cultures was not being fulfilled. Queen B eloquently explained,
Failing IVF treatment takes the whole person. I used to feel attractive, I used to feel like I had a wonderful personality, I was jovial, I used to feel smart, like I could have a child if I wanted, and now those things are all shattered.
Likewise, Queen B and Sweet Pea expressed, “Failing IVF was such a blow to our sense of womanhood … we still cannot consider ourselves as women without being able to reproduce.” Dee discussed how she felt so demoralized, “I felt so ashamed when I got the news that I failed my IVF treatment. My whole sense of being a woman was just ripped apart by this horrible news.” Isabella elaborated on the premise that because she could not give her husband the desired child this forced him to seek alternative methods, which resulted in infidelity and mistrust. Empress shared her sorrow and despair resulting from this failed IVF treatment, “That was such a dark time in my life. I was so heartbroken. I just wanted it all to end. Imagine three cycles, and I have gained nothing, what a nightmare.” Over
stricken with grief and sadness and just wanting to get away from it all, Isabella shared how she drove for hundreds of miles until she reached Tallahassee,
I felt like I was at the point of no return because my chance of becoming a mother was over. I was so frightened, nervous, and just kept shaking constantly because the heavy loss in my heart was too much to bear.
These research participants clearly described in their voices the feelings of disheartening. These women reported being profoundly discouraged in every sense of their beings, sisters set apart from the league of motherhood with their broken hearts. Emotionally scarred and having to bear their cultural burdens, these women lamented about how this loss transcended over every aspect of their lives.
The third theme that became evident in the data was perpetuating. This is defined as something that lasts indefinitely (Merriam-Webster Dictionary, 1996). This theme primarily captures the reverberating influence that failing IVF holds throughout the lives of these women. Essentially, it refers to the constant reminders, the ongoing reality, the permanent presence, and the lasting impact as a result of having failed IVF treatment.
These research participants reported being constantly haunted by the memories, the enduring loss, and missing the basic experience of motherhood. Nico stated, “This nightmare doesn’t really go away, everywhere you turn, it seems to be following you.” Fifi reported, “Just strolling down the shopping aisles in the grocery store, the one that contains all the baby products, and then you see a mother coming with her stroller reminds you of what you just don’t have.” A majority of the participants reported how frustrated they had become, especially hearing the following statements from friends, family members, and just about anyone in their social network,
Do you have any kids yet? Sweet Pea resented this statement the most with her comment, “Like kids are something you can just take off the damn shelf. People think it’s that easy and you just not trying hard enough… if only they knew just how hard you’ve tried.”
HunnyBun recounted,
So when are you going to start a family? You aren’t getting any younger
… like I really don’t know at the age of 40. When are you going to stop concentrating on your career and start on a family? You’re graying by the minute. Well I guess we’ll never be grandparents. Oh, I have just the opposite problem … I get pregnant so easily, why don’t you just take one
of my kids? You can always adopt. Any good news yet? Maybe you should take a month off and just relax; a vacation would do you good.
These prevailing impersonal and frequently insensitive remarks and treatment were also ushered by both the administrative and health care professional staff while the research participants were receiving treatment. They commented on the almost exclusive attention given to the technology of the treatment process and the lack of sensitivity to the emotional challenges they were facing. Dee recounted, “I felt like a piece of meat so that’s why I have changed doctors for my second attempt.” Nico reported, “My doctor never really cared enough about what I was going through; he just kept saying you can just repeat this if it fails again…why was he reminding me of another potential failure?” Isabella, Dee, and Empress were frustrated from the staff suggesting to them “You can always adopt if this treatment fails.” Furthermore, the loss of an anticipated future continuously raised new uncertainties about a future devoid of children and the female milestones associated with having them.
Holiday celebrations and family gatherings such as marriages, birthday celebrations, funerals, first communions, baptisms, and confirmations served as constant reminders where the conversations always revolved around childrearing and pregnancy. The theme of perpetuating was illuminated when Empress shared the following poem with the researcher,
Some days I’ve learned to dread more than all the rest, Difficult to get through I try my very best.
The day I hate most of all always comes in May,
It happens each and every year we call it Mother’s Day.
In church they’re given flowers, At home a handmade card, Dad making everyone lunch, Kids playing in the yard.
Reminds me what I do not have instead of what I do, A little one to give a hug and say, “Mom I love you.” Tomorrow I will live again just let me mourn this day,
I pray that I can make it through another Mother’s Day.
“Anonymous”, (2010)
These constant reminders challenged these women’s worldview. Sista recounted, “It’s very hard watching my husband playing with the kids of my family or friends because I know how badly he wants a child.” Sweet Pea, Ebony, Hunny Bun, and Nico reported, “I just don’t want to ever be invited to another baby shower, it brings about … memories that are haunting…day in day out”. All the participants talked about constantly getting an invitation of some kind to some
event. This became quite bothersome and often times quite difficult to handle. Queen B reported, “Every time an invitation arrived everything got worst, I was a complete mess. Un-warranted arguments would just come out of nowhere between me and my husband. I wish they would stop sending them.” Dee stated, “I have just been keeping to myself, I keep hearing over and over the things I don’t want to hear when I go the family events.”
These research participants clearly became quite insecure about the present as well as the future because of the psychological imprinting from these perpetuating reminders. These women unanimously concurred that these were very insensitive remarks and if people only travelled just one mile in their shoes, they would be able to get a taste of this bitter journey. Failing IVF treatment afforded these women visions of haunting images they would rather avoid.
The final theme that became evident in the data was guarding. This is defined as the act of protecting or defending, a defensive state or attitude (Merriam-Webster Dictionary, 1996). This powerful theme displays the means of preserving self after failed IVF treatment was experienced. It describes the research participants’ shifts from lamentations to ramifications, to focusing their energy toward the future. It also speaks to their struggles to construct and maintain a balanced perspective about life and self in one form or the other.
The women’s description of failed IVF treatment revealed an experience of intense introspective effort to preserve their sense of self in order to find their purpose and meaning in their lives. Dee reported that she and her spouse had to draw the line somewhere so they would not spend years trying to accomplish something that may not be God’s will. “I had to give up on this thing…even though … I tried IVF only once … my body was having problems … so I ended it.” Nico revealed, “The only way I found I could do it, is to just try to ignore it and put other things in place of it, like becoming extremely active in church, heading the Sunday school classes and youth ministry.” Sweet Pea indicated that she eventually had to end all the IVF treatment in order to regain a sense of self, “Yes it was really hard for me to just give it up … but after three strikes … I know I’m out, so I have to be … wise and not go down that road again.” For Hunny Bun, “I tried to psych myself up … I just do a mental block thing … you know think about the positives.” For Tinkerbelle, her challenge was to focus on the positive and not dwell on the negative; she focused on what she had not what she did not have.
The research participants maintained a level of secrecy concerning their failed IVF treatment. Maintaining a sense of the unknown by keeping friends and family at bay was their most reported way of preserving some aspect of themselves and their marital relationship with their spouses. “I just do everything to stay away from anyone or anything that will stir up the painful memories,”
were the words of Empress. Sista reported, “I just been laying low, especially with the upcoming treatment; I don’t want for anyone to discourage me.” Some of the women reported cutting themselves off from family. Nico reported,
I never talked about this with anyone in my family … only some friends that were receiving IVF treatment too … that’s the only reason I would even bring this up”. You just don’t talk about IVF treatment failure stuff in my culture, people would look at me like I am crazy. Only the few educated ones would probably listen but at the same time they might be casting judgment for doing things against God’s will.
The research participants intentionally avoided situations that would purposely remind them of their IVF treatment failure. They devised protective mechanisms to shield themselves from the haunting and constant reminders. For instance, Sweet Pea, Ebony, HunnyBun, and Nico reported that they avoided attending baby showers. Isabella stated, “I just don’t pay attention to the invitations, only sometimes when my husband insists we have to go. I try at all cost not to participate.” Self-preservation was essential because emotions were very fragile, their loss of privacy was great, and the emotional and physical stress of the situation escalated with each failed cycle. Isabella said this best when she reported,
I just had to change my whole view of the world and its expectations to cope with failing IVF … remind myself that God is in control. I truly believe that the worst possible thing you can imagine could happen and and then some.
Nico reported,
Tearfully, I tell myself kids were not meant for me, but in God I put my trust; he is the one in charge, and if it was meant to be it would have happened. The IVF would have taken all the way through.
They all shared with the research how demanding, confusing, disappointing, frustrating, and unfair this whole IVF treatment process was for them, and they had to secure measures against the obvious repercussions.
These women’s stories clearly divulged in their voices the means used to guard themselves. Their stories revealed a purposeful and intense introspective effort to preserve a more desirable quality of life. This necessitated a search for and the creation of a different kind of future. For all, this meant putting their energies toward work, exercise, and any other strategies they used. The activity or path to live life became their way of coping and finding some meaning to help soothe themselves.
The narrative stories in this study were an evocation of an emotionally laden, complex, and multidimensional life phenomenon experienced by Caribbean women living with failed IVF treatment. Through phenomenological descriptions, the researcher attempted to elucidate the meaning ascribed by these women to their everyday lives. Guided by Max van Manen’s (1990) phenomenological method of inquiry and analysis, this investigation provided the researcher with rich and thoughtful descriptions and increased understanding of what it is like for a Caribbean woman to live with failed IVF. The descriptions were developed from the women’s experiences and provided a clear and vivid view into these women’s lives. A deeper understanding of this was obtained. Chapter Five explains the meaning of the study.
DISCUSSION AND CONCLUSION OF THE INQUIRY
A discussion of the findings of the phenomenological inquiry into the lived experience of Caribbean women who failed IVF treatment is presented in this chapter. The researcher thoroughly examined the basic meaning and importance of this study. Since this study was based on post-modern philosophy, it should be acknowledged that there are multiple truths and realities for each participant, and that these are context-dependent. The words chosen by the researcher to describe and explain the participants’ life experiences are certainly open to different interpretations. This is an inherent characteristic of phenomenology (Sandelowski, 2007). An interpretative analysis of the themes that emerged from the study will be delineated and correlated with published literature and film. A discussion of the relationship between the findings of the study and the theory of meaning were analyzed. The implications of the study for nursing education, practice, research, and public policy, and its limitations were discussed.
This study was a qualitative research endeavor to describe the lived experience of Caribbean women who failed IVF treatment. The genre was phenomenology, and as with most studies, it all began with an idea, a personal interest, and a strong desire to uncover something of significance that had yet to
be revealed about this particular population’s experiences with this phenomenon. The rationale for this study was supported by the absence of preliminary data in the nursing literature regarding describing the lived experience of Caribbean women who failed IVF treatment.
As the personal narratives were collected, the researcher engaged in various converging activities that involved journaling, pinpointing expressions of meaning through literature and film, sifting through the implications of words in conversations, while searching for the essence of this phenomenon. This research chiefly exposed the depth of the challenges confronting these Caribbean women with failed IVF treatment and the multiple losses that were imposed. Another significant dimension of the experience of failed IVF treatment among the women in this study was the search for meaning, which they were compelled to address in order to move forward in their respective lives. The effort to resolve this failure and find hope for the future posed a substantial paradox to all participants. Many spoke of this specifically in the context of life’s purpose. Each woman described the necessity to find a new meaning in order to reframe the future of their life.
The overall impact of failed IVF treatment on individuals differs greatly and was influenced by factors such as cultural background and the importance of
having children. Coincidentally, the average woman takes it for granted that she will be able to have children. Attempting the IVF treatment process for any individual with infertility problems is completed as a last resort in the hopes of achieving the dream of motherhood. These research participants collectively reported that because they had been taught in their respective Caribbean cultures that life revolved around raising a family, attempting the IVF treatment process was paramount, despite the lofty financial costs this would incur. Furthermore, these women echoed sentiments indicating that it was a cultural obligation to reproduce and multiply. Therefore, the consequences of the inability to continue one’s family heritage would be judged negatively by many.
Receiving the news of failed IVF treatment evoked an emotional crisis for these Caribbean women precipitating their entire world to break into pieces. The theme of disintegrating emerged as the participants described their experiences.
Research participants’ reported feelings of fragmentation, total disembodiment, complete disarray, and life having no meaning, no purpose, because they were now a complete failure as a result of failing IVF treatment. Possessing intense feelings of being diseased, defective, incapable, and amounting to no good, they faced upheavals similar to those associated with the experience of death in a family or divorce. In a study conducted by Hirsch and Hirsch, (2004), the researchers reported similar descriptions found in this study of the infertile individual feeling damaged and defective. Failing IVF treatment meant they did
not adhere to the requirements set by society. Dee depicted this with her comment, “I was incapable of doing the one thing I am expected to do.” Sista also felt that her function on this earth was not yet completed and that is the reason for her attempt at the second IVF cycle. As noted by University of Michigan professor, Rosario Ceballo, in a provocative article entitled, “The Only Black Woman Walking the Face of the Earth Who Cannot Have a Baby: Two Women’s Stories”, (1999) a complete connection was noted by this researcher about the similar experiences of these two women’s lives just disintegrating as experienced by the women in this study.
Feeling that one would be left behind for not adhering to their cultural script, these women primarily looked inside their bodies for explanations of failing IVF treatment. The feeling that one’s body had failed, that one was failing their partner, brought on further, a sense of loss of control of bodily processes.
Failing IVF treatment placed these women in a greater level of predicament. Essentially, the impact of failed IVF treatment was felt long after the treatment ended as indicated during this investigation. In the study, “Life 20 years after unsuccessful infertility treatment,” the study participants concluded that they felt inferior to other women and that their lives were falling apart as consequence of failing the attempted IVF treatment process (Witberg, et al., 2006). This study only consisted of women three years post treatment; however, based on the results of the study previously mentioned, this researcher was able to recognize a strong
inclination that these Caribbean women would continue to experience these same feelings over an extended period of time. The findings of this study were also affirmed by McCarthy (2008), where the researcher also found that the impact of failing IVF treatment would be felt long after treatment. The Jamaican singer Marion Hall (affectionately known as Lady Saw) sings in her song entitled, “No Less than a Woman” about her own personal experience with infertility treatments, which mirrors the experiences of the women in this study. The following verse is a reflection of the sentiments shared by these research participants,
I may not know the joy of giving birth, May not experience the pain and hurt,
But I know how it feels to lose a chance at having a child, And if pain is pain then I’m hurting inside.
“No Less than a Woman” (Hall, 2007).
The research participants overwhelmingly reported questioning their past behaviors to decipher whether or not they might have unintentionally contributed to this dilemma and why they were incapable of fulfilling their main purpose in life. Many could not find anything to cast their blames on. However, Hunny Bun and Queen B wondered if it was because of the birth control pills they used over
the years. Fifi recalled chastising herself, “you are a great failure not only to world, but to mankind, what kind of legacy will you leave behind?” Empress and Ebony shared concerns about who would take care of them during their golden years.
Collectively, they felt that they were being denied a biological right, as a result of their failing bodies. Furthermore, one’s reproductive ability had become a merely physical identity. Marion Hall also addressed this issue in her song entitled, “No Less than a Woman:”
Infertility is a word that a lot of people are ashamed to mention, A lot of people are so illiterate when it comes to that word,
If infertility makes me less than a girl,
What would I say to so many women in this world? Would you tell them have faith,
Would you tell them to be strong?
Or would you tell them that they’re less than a woman.
“No Less than a Woman” (Hall, 2007).
Consequently, these women struggled to reconcile their opposing identities of self. Their identities were incomplete. These findings were consistent with the findings in the study conducted by Pottinger et al. (2006) with Jamaican women. These researchers reported that women’s fears about not having a child were centered primarily on them not feeling complete as woman. The women from this research study viewed childlessness as integral to their acceptance of self. In the film entitled, “The Pregnancy Pact” (2010), it was the assumption of the teenage girls involved that the only thing that would make them perfect and permit them to have a sense of self and purpose in life was achieving pregnancy. For these teenage girls, not achieving pregnancy would cause their lives to disintegrate, so they purposefully embarked on their meaningful mission. Despite the fact that these individuals were merely 15-year-old teenage girls, a connection can be made on the importance placed on having a child as a means of self-identification. In order for them to feel that sense of belonging in their pact, achieving pregnancy became the only route for the continuation of survival. Similarly, the women in this study placed a great value on achieving pregnancy in an effort to fulfill one of their most meaningful milestones among the fraternity of womanhood.
Each research participant responded to the news of failed IVF treatment with some kind of negative emotion. For some, they felt that their lives lacked purpose and meaning. For others, it meant a lot of resentment at having been
denied a highly significant life choice. The emotional upheavals surrounding failed IVF treatment evoked significant emotional scarring, emotional anguish, and mental distress, allowing the theme disheartening to emerge. Essentially, these research participants were suffering from a broken spirit. Kellie Coffey in her song entitled, “I Would Die for That,” sings about her personal experience with the following words, reflecting these same kinds of emotions mentioned by these women,
I would die for that. Just to have one chance, To hold in my hands, What so many have,
I would die for that.
And I want to know what it’s like To bring a dream to life.
How I would love What some give up. I would die…
I would die for that.
“I Would Die for That” (Coffey, 2007).
The research participants all spoke of the hope they felt when they first sought treatment because they believed this would be the right choice, the right path, and just what it would take to conceive. All of the participants talked about childbearing being a fundamental right to themselves as a species and to the extended families they grew up with. Consequently, failing IVF treatment has been one of their most heartbreaking experiences. Sweet Pea became so tearful with the following reflection, “All these years I had so much frustration and discouragement just trying to have a child,” and asked the researcher for a few minutes just to redirect her thoughts and re-focus herself. Results from the study conducted by McCarthy (2008) reported similar sentiments where the women felt this was more than dreams lost, all their hopes were taken away when they failed the attempted treatment process.
All of the women discussed the personal challenges to their sense of self and the meaning of their lives. They shared, with great honesty, the pain that their failed IVF treatment had cost them and what they had endured to make sense of their experience. The series of shots every 6-8 weeks and blood work, with needles in the arms, stomach, backside, and feeling like guinea pigs, amounted to nothing but frustration and immeasurable physical and emotional pain. While they
described their depth of sadness and at times their levels of anger and frustration, they also expressed their feelings of being out of synchronization with life’s patterns and falling short in one’s anticipated contribution to society. These reports highlighted the emptiness and the broken spirit that was created, when the hoped-for child did not become a part of the woman’s life.
Emotionally destroyed, participants shared how they endured periods when they felt emotionally out of control, felt resentment, and felt like exploding. They spoke of frustrated rage at the injustice of their human suffering. Bubbles willingly admitted to having so much resentment towards her sister just because she was delivering ‘baby number five’. Tinkerbelle commented,
The news that infertile friends have conceived with treatment can be bittersweet; you are happy for them, and you know that this also means there is hope for you, but you feel it’s unfair that you are not the one pregnant and the despair grows deeper as to whether you will ever be able to have a child.
Overwhelmingly, the amplitude of IVF treatment failure was equated even deeper when research participants repeatedly described failing IVF treatment as complete personal devastation. Sista recounted, “I was totally, totally devastated, because I did get a positive pregnancy test result at home but according to my doctor I had failed my IVF treatment process…. I was so overwhelmed, I just
cried for days.” Tinkerbelle recalled experiencing similar sentiments of high joy and then complete devastation because of the same false positive results. For many of these research participants, grief essentially became more than tears.
These emotionally charged women reported how they were thrown into a state of disarray and confusion that often times resulted in emotions being forcibly broken into pieces. With emotions shattered, an overall sense of self depreciation and isolation along with feelings of worthlessness and guilt permeated.
Woven throughout this theme of disheartening, is the erosion of self- confidence. This was experienced as a result of the inability to effect a change in the outcome of the IVF treatment. When the longed-for baby never happens, these research participants willingly admitted that something was wrong, necessitating the need for seeking professional help. The physical erosion comes after numerous tests are completed, regimented treatments schedules are followed, and the result yields treatment failure. Consequently, these women reported traipsing from one doctor to the next, which resulted in more disappointments and fading hopes. Their dreams were again destroyed and their heartaches more painful and almost unbearable. Fifi commented “I have lost everything I ever wanted, what I thought was a pretty stable relationship, in this journey I have lost a big piece of myself.” Some participants even reported the loss of spontaneity and romance as it relates to intimacy. Instead, they recounted intimacy being more completed on demand or technical with the overall dreams of pregnancy being lost.
Violently separated into parts with a damaged self-esteem, these women reported facing a significant amount of societal stigma. Increasingly, they reported being isolated from friends and families. Most women revealed that friends and families were for the most part insensitive to their pain. They simply could not relate to what they were experiencing. Ebony felt she could “whip out a baby” in the first two IVF cycles but failed. Her family constantly reminds her of how fertile everyone else was in the family; subsequently, not achieving pregnancy was all her fault. For many, strong ties were broken; Nico, Ebony, Hunny Bun, Sweet Pea, and Empress lost their marriages. Those that remained with their spouses did not always find it easy to maintain their existing marriages. Isabella narrated,
The love for my husband will never be the same, ever since he used the words, ‘the best thing that could ever happen to you was failing that IVF, now we can move on with our lives’. He tries to be supportive; but never seems to be able to do or say the right thing, so he gets “put off and shut off” and then refuses to talk about it, exacerbating the tension even
more especially since he has now obtained a child out of the marriage.
Participants’ also elaborated on the notion that some of their broken hearts will never completely heal, despite efforts to recover and adjust.
From the research participants’ revelations about the constant reminders they encountered as a result of failing IVF, the theme of perpetuating emerged. Most of the women recalled being constantly “haunted” by the memories, experiencing repetitive nightmares, constantly grieving for what was lost, the failed IVF, the hope for having a child. The permanent presence that comes from failed IVF treatment was something that would always be contemplated and commemorated. It serves as a factor that would ultimately influence the meaning of substantial life events.
The nature of this experienced loss revealed by these research participants had an enduring quality. These women indicated that after failing IVF treatment they were constantly reminded of their indifference amongst other women as well as the depth of their loss. Each participant acknowledged that it was a persistent reality to her. The significance of its impact was remembered as felt and could be prompted with personal triggers or memories at any time. It was more a lost dream, the loss of a hoped-for child rather than an actual child who can be actively grieved in a communal context where others recognize that something has happened. This loss associated with failed IVF treatment is grieved in private, which is considered a form of disenfranchised grief. This type of grief essentially has no place or context in society, so the individual is left to deal with this alone.
For these participants, this lack of public acknowledgement of their losses intensified the grief and contributed further to the isolation they experienced.
Profoundly hurt by the experience of failed IVF treatment, these women disclosed that their scars never really go away. Isabella tearfully divulged, “It doesn’t really go away. This is like something has died, but nobody else knows it. Only you know it. And so nobody else is mourning.” Nico expressed her strong desire to have these memories just vanish away,
I just wish of having the skillfulness to put this IVF treatment failure in a box because every year when the anniversary of the IVF treatment failure comes around, I suffer from severe headaches that lasts for days on end despite medication therapy.
Most of these women expressed difficulty thinking about anything other than the failed IVF treatment process. This resulted in a diminished ability to concentrate and accomplish tasks. Isabella, Queen B, Bubbles, Fifi, and Ebony shared the same sentiments of incessantly thinking and talking about failing IVF treatment, their entire world revolved around how to have a baby. At times, most of these women reported how they could not even understand how they have become so obsessed with having a child. They reported personal obsessions with buying baby magazines, subscribing to baby clubs, and seeking out the latest trend in baby fashion and maternity clothing. Another example includes
something as simple as the pastel color of blue or pink. Sweet Pea expressed, “I couldn’t look … oh … look at that blue stripe or that pink stripe … blue is for boys, pink is for girls, it was just like a constant obsession, anxiety…you know five fricking years, and I have neither.”
According to the research participants, the permanent presence was also perpetuated by those constant reminders that are innocently present in our everyday surroundings. Examples discussed by these women would range from a simple invitation to a family meal or to social gatherings such as celebrated holidays, bridal showers, birthday parties, weddings, confirmations, first communions, baptisms, quinces, funerals, and baby showers, where the conservations usually focused on pregnancy and child rearing. These findings are reflective on the development of a “non-parent life style,” noted in the results of the study completed by Witberg et al. (2006). For these Caribbean women, failing IVF treatment accounted for many things. They periodically grieved the loss of time and energy. For some, grieving meant loss of opportunities such as career growth, hobbies, travel opportunities, and financial stability.
In an effort to avoid this failed IVF treatment from becoming an all- consuming event, participants shared with the researcher a variety of techniques used to achieve some sense of self preservation. This step was needed because
they recognized how their emotions had become extremely fragile. This allowed the theme of guarding to emerge. According to these research participants, their main goal was to decrease feelings of helplessness, hopelessness, emptiness, and worthlessness and block any additional insult or injury in an effort to regain control over their sense of purpose and meaning in life. They basically had to decide the kinds of pain they would allow to continue and the kind of pain they would have to learn to live with to be able to move ahead.
During the study, it was revealed that these women were at different points in the process of reconciling their life questions. Nevertheless, they were poignantly aware of what they had hoped their life would be as well as their need to reconcile that image with what they would now be required to do to create a new and meaningful life. Even when they spoke gratefully about the life they had thus far, it was with an awareness of its difference from what they had anticipated. Kellie Coffey expressed this in her song, “I Would Die for That,”
I’ve’ been given so much, A husband that I love
So why do I feel incomplete? With every test and checkup We’re told not to give up.
He wonders if it’s him. And I wonder if it’s me.
Sometimes it’s hard to conceive, With all that I’ve got,
And all I’ve achieved,
What I want most before my time is gone, Is to hear the words I love you mom.
“I Would Die for That” (Coffey, 2007).
The time after treatment became a time for introspection, reassessment, realignment, and redefinition of what each woman wanted her life to become, a commitment to making sure these emotions from IVF treatment failure did not ruin her life. In the study completed by Witberg et al. (2006), research participants also took charge of their lives by letting go when it proved impossible. According to most of these women, this shift was not only a choice to go on but also a decision about how to go on. This new choice was an action initiated by interest of self in order to preserve the quality of one’s life. There was also a necessity for creating a new life. This action of “taking stock” symbolized the recognition that the individual’s current response to life circumstances was no longer viable. The
women described a very active awareness of self-preservation by letting go and doing whatever it took to create a new space to move on or into. Particularly, most participants verbalized examples of their conscious efforts to gain perspective, which created this avenue. Dee elaborated, “My husband and I had to draw the line somewhere so we would not keep spending years trying to accomplish something not in God’s will.”
As a means of guarding oneself, each research participant engaged in some level of self-isolation after failing IVF treatment. Maintaining a sense of the unknown by keeping friends and family at bay was their most repeated way of preserving some aspect of themselves and their marital relationships. For example, some participants would not attend church on Mother’s Day, as it was simply too hard to see everyone there with their children, especially those young teenage or unwed mothers. Essentially, these women reported looking for ways to avoid attending family gatherings and social events. Fearing that they would be the subject of discussions about pregnancy and children, many of the participants decided to forgo family or social gatherings and opted instead to spend time helping others or spending time doing something special with their partner. With the exception of Isabella, all the women reported that they stopped attending baby showers. Sista, Isabella, and Nico avoided holiday and birthday celebrations.
Several of the participants reported they would shy away from people who had young children. Most of the women reported that they engaged in self-isolation
even before treatment but even more so after IVF treatment failure. For some, isolation meant remaining very secretive with regard to the failed IVF treatment. Some of the women reported being so drastic as cutting themselves off from friends and family.
Consequently, with each passing failed cycle or cycles, the hope that was felt so strong-heartedly diminished slowly. It seemed that the greater the investment, both emotionally and physically, the greater the devastation, disappointment, and discouragement that transcended. The women who used emotional roller-coaster ride as an analogy to describe their experience were not just saying that the journey is filled with many highs and lows, but they were also saying that they had lost control. They reported guarding themselves and increasingly becoming more secretive, especially with issues relating to their IVF treatment regimen and other fertility issues.
Deeply rooted in the core of each individual is the desire to formulate some sense out of life as it is seen, heard, and experienced. The persistent need to decipher life’s meaning remains an integral part of being human. Starck’s Theory of Meaning (1985) was developed to psychologically support individuals, groups, or communities handle stressful, traumatic, life-changing events. This theory focuses on discovering meaning when facing life challenges, which threaten one’s
purpose in relation to unique circumstances. The fundamental building block of this theory was materialized from the work of Victor E. Frankl (1984).
The foundation for the theory of meaning is based upon the following principles. The first principle recommends that a person’s search for meaning is the primary motivation of life (Frankl, 1984). In other words, the main function of life is to find meaning. This meaning is something that is unique and specific. It must be achieved by the individuals themselves. According to Fabry (1991), a person may discover meaning in life, even when challenged by a hopeless situation, the effects of trauma or when coping with a fate that cannot be changed. Logically, this justifies that every life experience despite the circumstances holds meaning and purpose. The second principle suggests that a person is free to be responsible and is responsible for the realization of the meaning of life, the logos or the emblem of existence (Frankl, 1984). In essence, every individual has a duty to themselves to find meaning in whatever they do and whatever they experience. This will furnish the individual with constructive tools to utilize when faced with challenging situations laced with unavoidable suffering. The third principle suggests that a person may find meaning in life even when confronted with a hopeless situation, when facing a fate that cannot be changed (Frankl, 1984).
Essentially, when individuals encounter their worst possible circumstance or experience that life has to offer, light and meaning will be found at the end of the tunnel.
The findings of this current research study have led the researcher to a connection between Starck’s theory of meaning and the lived experience of Caribbean women who failed IVF treatment. The associated themes of disintegrating, disheartening, perpetuating, and guarding connect with the major concepts of this theory.
The three major concepts of Starck’s Theory of Meaning (1985) are life purpose, freedom to choose, and human suffering. This theory was generated to help individuals experiencing inevitable suffering find ways in which they could still discover meaning in their lives. According to Starck, meaning is a journey in the direction of achieving life’s purpose, and it was up to the individual to choose their path despite the immutable suffering. Therefore, meaning is something to be found rather than given, discovered rather than invented; it always changes but never ceases to exist (Frankl, 1984).
The primary concept for the theory of meaning is life purpose. According to Starck (1985), this represents the synopsis for an individual’s existence and calling. It is via life purpose that the individual brings fulfillment to one’s status in the world. The theme to the individual’s life purpose is making a worthwhile contribution that will positively impact the world. Frankl (1984) specified three
ways to find meaning on the path to uncovering life purpose; one cannot live for themselves alone, experience life in all its fullness, be of good courage no matter what tide flows your way.
Experiencing an unalterable event such as failed IVF treatment, these Caribbean women remained extremely challenged in accomplishing their individual life purpose. Nevertheless, accepting all of life’s trials allowed these women to find ways of living beyond this devastating failure. Essentially, by guarding themselves, they were able to regain some sense of purpose to continue with their respective lives. Many reported being more focused on their religion and accepting their fate as the will of God. Others turned to roles where they found themselves being fulfilled. For instance, Isabella and Nico became Sunday school teachers. This role allowed them to give back to some child, what they cannot give to their own. Sista is on her way to starting the “Sista Movement” a support group intended for Caribbean women experiencing the effects of failed IVF treatment. Tinkerbelle and Empress became very active members of the Resolve Infertility support group by volunteering to speak about their experiences publicly in an effort to provide more exposure and help break the silence about the consequences of infertility and failing treatment options. Some of the other participants simply started focusing on self as opposed to IVF treatment failure.
They began to explore the simple aspects of life, like engaging in personal hobbies and interest, exploring nature, gardening, traveling, and focusing on good
fortune rather than one’s misfortune allowed many to find meaning in life. Loving and living life for what it represented today as well as the future brought back some semblance of their purpose in life.
The second concept of the theory of meaning is freedom to choose. Starck (1985) described this as an approach to choose wisely among options over which one has control. Frankl (1984) noted that human beings are free to distance themselves to discern meaning possibilities that are attached to a specific situation. This involves making meaning or discovering a process that will modify the individual’s reality. Freedom includes what one can do including choosing what attitude to adopt in safe guarding self. Frankl (1984) also stressed that individuals have the freedom to rise above suffering and find meaning in their lives regardless of circumstances.
The concept of freedom to choose supports the theme of guarding that emerged in the study. These women had to find ways and means of preserving themselves despite their personal failures and short comings in the eyes of many including themselves. They struggled to deal with the consequences of their failed IVF treatment. In their attempt to regain a sense of control over their lives, they had to take measures to avoid the constant reminders associated with their painful experience from constantly haunting them. Bubbles stopped living by the
calendar, Nico just stopped talking about it, and HunnyBun made a conscious decision to let it slowly fade away. “Trying to make the best of things” was a comment used by some of the other women. The participants felt they had the right to choose their attitude and coping mechanisms in order for their lives to go on regardless of how the world will judge them. All of the participants demonstrated some type of behavior to find protective mechanisms to shield themselves from the consequences of failed IVF treatment. These research participants’ essentially began to choose seeing and knowing themselves in a new light. This included a life without children while undergoing the process of also choosing to painfully re-assemble one’s self.
The third concept of the theory of meaning is human suffering. Suffering is a penetrating and unavoidable phenomenon in the human experience. Frankl (1984) refers to suffering as being a subjective, all-consuming human experience. Essentially, things happen that are unavoidable and unexplainable. The experience of suffering is associated with events that threaten the wholeness of the person or present impending destruction of an individual’s sense of self.
The concept of human suffering supports the theme of disintegrating. Failing IVF treatment caused an immeasurable amount of suffering for these Caribbean women because their worlds came crushing down all around them, and
they had no control. Empress narrated it best, “My life was crumbling to pieces, I watch it go painfully and slowly, I walked through many streets, at un-Godly hours, because my life was coming to a halt.” Isabella drove for days trying to flee from the pain, not knowing where to turn or what avenue to take. The aspect of human suffering was felt by all in one form or the other.
Figure 4. Theory of Meaning (Starck, 1985).
The scope of the theory of meaning provided a framework to generate a deeper and more authentic understanding of the lived experience of Caribbean women who failed IVF treatment. Underpinning this phenomenon are the themes of disintegrating, disheartening, perpetuating, and guarding. Receiving the news of failed IVF was a life-shattering experience that left many of the participants with a profound sense of being a complete failure. The women in this study were forced to guard themselves from the constant reminders and painful memories.
This provided a route for the participants to explore different ways to ascribe and
make sense of their lives by finding meaning in their individual lives while dealing with IVF treatment failure.
Implications of this study for nursing education are significant for quite a number of reasons. Despite the escalation in the use of IVF treatment across the United States, nursing curriculums still do not address the care of clients and families with infertility problems. The findings of this study clearly illustrated a fundamental need for healthcare professionals to become more knowledgeable about the pathogenesis of infertility, its treatment process, and the challenges that arise as a result of treatment failure. Furthermore, failing IVF treatment is classified as experiencing a trauma, which necessitates the critical need for more awareness in order to provide effective and immediate interventions. In addition there is an urgent need for healthcare professionals to be educated about the fact that infertility is a disease process like any other defined illness that necessitates clinical evaluation, diagnosis, planning, and treatment.
No preliminary data was found in the nursing literature regarding the experience of Caribbean women who failed IVF treatment. This study delved into this issue, which for the most part, had remained essentially untouched.
Awareness was raised in this study about these women’s personal struggles and emotional turmoil, something that most people do not consider and cannot even
begin to fathom until they find themselves on this journey. The acknowledgement of these women’s experiences by the nursing profession is of vital importance.
These findings will add to the body of nursing knowledge and help to develop educational programs geared towards Caribbean women who failed IVF treatment.
The findings of this study also demonstrated the fundamental need to comprehend meaning construction in the suffering experience of Caribbean women who failed IVF treatment. The process of formulating meaning occurs when both the healthcare professional and client engage one another to create understanding and coherence in which possible meanings or choices emerge to serve as a catalyst for healing (Wills, Grace, & Roy, 2008). Elemental nursing education should incorporate knowledge about meaning construction to assist clients in making sense of their health and healing concerns. Nursing education must have a global perspective and be reflective of health-promoting and health- sustaining behaviors especially in marginalized populations. The nursing profession needs to evolve to meet the changing demographic needs of the societies in which we live. Thus nursing interventions regarding failed IVF treatment will be identified without the current stigma narrated by these research participants.
This study highlighted several important implications for nursing practice. To begin with, few healthcare practitioners acknowledge the emotional stress, the physical strain, and the financial burdens associated with failed IVF treatment.
The findings of this study indicate the imperative need for a comprehensive assessment of the woman’s overall well-being and mental health status. This study clearly revealed the long-term physical, spiritual, psychosocial, and emotional effects experienced by these Caribbean women. The emotional integrity, psychological and mental stability of these women experiencing treatment failure was extremely challenged. It became evident that particular attention must be made when assessing the support systems of the individual including spousal, extended family, and social support network.
Completing this assessment will furnish the healthcare professional with the means to ascertain levels of social isolation that may influence the individual’s overall health and well-being. This will also serve as a basis for determining supportive services that may be required in the wake of IVF treatment failure.
The need for implementing effective psychological counseling and adaptive behavior techniques to cope with IVF treatment failure must be constructively implemented before and after IVF treatment.
Healthcare professionals are in an ideal position to help family and friends understand the types of support services needed after failed IVF treatment.
Essentially, these participants shared the need for more constructive communication techniques, better problem-solving skills to maneuver themselves through this process. Family and friends must be educated to understand the importance of their physical presence, small gestures such as giving cards, bringing over a meal, sharing their own personal experience with loss, and not minimizing the losses associated with failed IVF treatment. In addition, healthcare professionals should also be ensuring that patients are educated about their procedures to comprehend the implications of their treatment choice. Patients should be encouraged to explore and understand emotions associated with the whole infertility crisis. Finally, the nursing profession must become more sensitive when rendering care to those afflicted with the disease of infertility and suffering the consequences of failed IVF treatment to these issues.
Although the findings from this research study contributed to just a small portion of the existing gap of nursing knowledge regarding the phenomenon of failed IVF treatment in Caribbean women, this is simply one study. As mentioned in Chapter One, there was no preliminary data in the nursing literature about this phenomenon. There is much more work to be completed. More in-depth investigations should be conducted that focus on meaningful insights into the
health-related beliefs and dilemmas faced by this population as it relates to failed IVF treatment. The investigative approaches should include both positivistic and post-modernistic traditions to pinpoint and conceptualize the effects of this crisis on the lives of these women.
A systematic collection and analysis of empirical and experiential data is needed to build a strong foundation for designing relevant and meaningful interventions to improve treatment outcomes for this underrepresented population. Further development of the concepts meaning construction is vital. Concept development is an integral component in fortifying a profession’s current body of knowledge. As with all qualitative research, further inquiry is warranted of this nature and again with larger samples. Investigative approaches should include both positivistic and post-modernistic traditions to identify and conceptualize the effects of the problem on these women.
The findings of this study revealed several implications for public policy. There is a tremendous need for policies aimed at providing health insurance that will attend to the special needs of marginalized populations such as Caribbean women suffering with the disease of infertility and the consequences of treatment failure. An effective approach from which to generate policy solutions to address the problems of failed IVF treatment in the Caribbean women population should
reflect perspectives and understanding of this problem consistent with their cultural values and assumptions. The research participants noted that one of their strongest impediments in seeking IVF treatment to counteract their infertility problem was treatment affordability. As mentioned in Chapter One, only 10 states in the United States provide insurance coverage that will cover infertility treatment option. As such, government must consider methods for making it less costly and increase the means to access quality healthcare including infertility treatment options.
For decades, economic changes in the world continue to profoundly affect access to quality health care, people’s health, and other social services. In the United States, many discussions are conducted on a daily basis about human welfare, yet the government cannot bring about effective polices to address the basic determinants of health and well-being. It is evident that the fundamental prerequisites for a healthy society are access to the basic necessities of life, such as adequate food, clothing, sanitation, housing, and healthcare. Government has a fundamental responsibility to ensure universal access to quality healthcare and other social services according to the people’s needs. Health is clearly a reflection of a society’s commitment to equity and justice. Many of the research participants shared their frustration about insurance policies covering procedures for cosmetic reasons, yet they will not even consider those treatment options related to infertility.
Currently, there are very few infertility clinics that provide women with resources to assist them with effectively coming to terms with their infertility diagnosis and especially failed treatment options. As such, it would seem that the pragmatic approach in caring for women faced with failed IVF treatment dilemmas would be to acknowledge this, as a physical as well as an emotional issue that should be treated concurrently. In other words, these women should receive the same treatment for their mind, body, and soul because by definition infertility is more than just a physical malfunction of the reproductive organs; infertility is a condition that affects every ounce of their being and treatment failure is even more devastating for the individual.
Application of the findings of this study fosters a culturally congruent approach towards development of initiatives that may lessen the impact of the crisis among this marginalized population. Given the fact that the more educated portion of this population is also postponing child rearing and the elderly section continues to make up the largest portion of the population, the question of who will care for the aging population becomes not only, a social concern, but a financial one as well. The future of tomorrow has become questionable and implementing public policies to address this crisis is of utmost importance.
There are several identifiable limitations to this study. The researcher encountered great difficulty and resistance in the recruitment of potential research participants due to the sensitive nature of this topic. In addition, several of the potential research participants decided not to participate in the study because of the emotional feelings that were aroused at the commencement of the interview. The findings of this research study are limited by the homogenous demographic characteristics of the research participants. The researcher recognized that the same questions may be answered differently with a different researcher, in a different venue, and at a different place in time. This limits the ability to generalize the findings of this investigation. However, as with all studies within a qualitative tradition, results are not intended to be generalized but regarded as exploratory in nature.
This study sought to explore the lived experience of Caribbean women who failed IVF treatment and to identify benefits and impediments that may be used to spawn future research and shape existing and future regarding IVF treatment failure in the Caribbean society. With tremendous assistance from participants willing to share their stories, this was accomplished. Their explanations of failed IVF treatment illuminated the temporality of narratives, the terms with body and cultural failure, and the inadequacy of the biomedical domain. Most importantly, they reveal the indeterminate world in which people facing this dilemma actually go through on a daily basis. Phenomenological principles were applied, and four themes became evident while the researcher immersed herself in participants’ spoken words. Those themes were disintegrating, disheartening, perpetuating, and guarding. The researcher is indebted to the participants who openly conveyed their experiences. These women described the existential challenges to their sense of self, identity, and the meaning and purpose of life. These women described failed IVF an existential life crisis that necessitated a life review and a redefinition of themselves while coming to understand their own life story. Their experience contributed to an altered view of themselves and their world. Failed IVF treatment and its role as a life-defining experience pervaded their stories of living with unsuccessful treatment. Honoring the nature of the losses and challenges associated with involuntary childlessness
and the ramifications for the future is critical to grasping the influence of infertility on women’s lives
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APPENDIX C: LIST OF FREE COMMUNITY SOCIAL SERVICES
PROGRAMS
List of Free Community Social Services Program Bayview Center: 305-892-4600
Mental Health Center Jackson Memorial Hospital: 305-355- 7148
Henderson Mental Health Center: 954-463-0911
Jewish Family Services: 954-370-2140
South County Mental Health Center: 561-495-0522
Wanted: Volunteers for a research study
“Are you a Caribbean woman, residing in South Florida, over 18 years old, able to speak and read English, and have failed at least one In Vitro Fertilization Treatment #2 within the last three years?
Your information will be kept confidential.
Please contact Claudette Chin at ivfstudy@yahoo.com or call directly at 305-333-8854 to learn more about this study.
APPENDIX F: INTERVIEW QUESTIONS AND PROMPTS
Interview Questions and Prompts
“Tell me what it is like for you to be a Caribbean woman living with failed In Vitro Fertilization Treatment”.
Demographic Questionnaire
Date / Time:
Pseudo Name:
Date / Time:
Interview Protocol
Researcher: Claudette Chin, MSN, ARNP
Pseudo Name:
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