Women ’ s experience of infertility & treatment – A silent grief and failed care and support

Infertility is one of the components of sexual and reproductive health and rights, but is not as widely addressed as pregnancy, birth, and contraception. Infertility is a global problem, and it is estimated that around 186 million individuals are affected worldwide. Infertility and infertility treatment impact on women ’ s overall wellbeing including their mental, emotional, sexual and spiritual health. Anxiety and depression is prevalent in these women. This study sought to explore the experiences of women going through infertility and IVF in a global context. This study is a metasynthesis with a meta-ethnographic analysis design based on 19 qualitative research studies, including 503 women, focusing on women ’ s experiences of infertility and IVF treatments. Three main themes were identified; the personal reproductive trauma, the impact of and on relationships, and being failed by the healthcare system and society. The personal trauma and experiences included stress, grief, inability to focus, chock, insomnia, anxiety, withdrawing from others, sense of hopelessness and guilt and shame. The infertility and IVF journey also either caused conflicts in relationships or helped the couples to grow stronger. At the same time, relationships with friends and family were strained due to isolation and feeling stigmatized, and not understood. Finally, the healthcare system and providers lacked adequate support, holistic and caring care, and the women felt dehumanized and failed by the healthcare system. It is therefore critical that the healthcare system provide the time, information and support needed to deal with infertility and IVF to maintain quality of life and wellbeing.


Introduction
Infertility is a global health issue, and it is estimated that around 48 million couples and 186 million individuals are affected worldwide [1].Infertility has an impact on women's overall wellbeing including their mental, emotional, sexual, and spiritual health, and anxiety and depression is prevalent in these women [2].Involuntary childlessness is a public health issue and is life-changing for those that experience it, and therefore services and support around reproduction is crucial [3].Some of those going through infertility are being helped through medical investigations, hormonal treatment, and more advanced support such as in vitro fertilization (IVF).However, for many individuals and couples, remaining childless is a cold fact, which has its roots in society and the health care system, lacking standardized tools and diagnostic protocols to diagnose and treat infertility [4], as well as not having the structure and proper financing to offer health care services [5].
When we dissect "sexual and reproductive health and rights", with the emphasis on reproduction and rights, in the context of infertility, one can start understanding infertility support and treatment as a basic right and necessity [6].Although research shows the prevalence and evidence of the negative impact that infertility and treatments have on women and couples globally, it is still neglected on a policy level which especially impacts people in low-and middle-income countries [7].United Nations (UN) level policies highly emphasize the prevention of pregnancy and thereby adds to the silencing of the neglection [8].Infertility might not be deemed as detrimental or crucial to an individual's and couple's lives, but it is also highly stigmatized in society [7].
Since the onset of assisted reproductive technologies, around 8 million children have been born through treatments such as in vitro fertilization (IVF) [9].IVF is however not available for most women in developing countries as it is an expensive treatment, and the health care funding varies from country to country [10].For those that do have access to IVF, it is not always successful at the first attempt and some couples must go through many rounds of IVF before they succeed, if they eve r do succeed.A study by Pinborg et al. [11] showed that a total of around 30 % of couples that had initiated artificial reproductive technology (ART) in a 5-year time frame remained without the birth of a child.The IVF treatments, being invasive and not only putting physical pressure on women, but also emotional and mental, can be traumatic and potentially devastating when not successful [12].Unsuccessful IVF treatments lead not only to disappointment, but also anxiety, depression, marital issues, non-satisfaction in sexuality and a sense of loss [13].
Infertility is an invisible condition that sometimes is explained as an invisible loss and mourning of something that might not have been seen or felt by others, but that is a dream and hope of a longed-for future [14].Understanding the experiences of women going through infertility is essential to provide the treatments and support that are necessary for the attainment of health on all levels.
There have been numerous qualitative studies conducted all around the world on the topic of the experience that women have, going through infertility and treatment, therefore, synthesizing the studies already conducted can give a wider perspective on the topic and give space for interpretation.Gaining insights on women's perception and experience of the journey, can help society and the healthcare system to better support women in the process.Therefore, the aim of this study was to explore women's experiences of infertility and infertility treatment.

Methods
This study is a qualitative metasynthesis [15] with a metaethnographic [16] approach.After the formulation of the aim for this study, search terms were chosen specifically to find research studies that focused on the experiences of women diagnosed with infertility (unexplained, sub, primary and secondary) and their experience of any type of infertility treatment.

Inclusion and exclusion criteria
Qualitative, peer reviewed studies were included which focused on the experiences of the women going through infertility and treatment.Studies with mixed methodology were also included, and the qualitative components are part of the metasynthesis.Studies published from the year 2000 and onward were included, to ensure the relevance of the results for our current time.Studies included are in English and ethically approved.No limitations were set on the physical country location of the studies nor the age of participants.The focus of this research was to study the experience of women going through infertility and treatments which automatically then excludes the partner's experience.Studies that included the partner were still included in the syntheses, but only the experiences and insights from the woman that were meant to carry the child was analyzed.To ensure that the dimension and the intersection of infertility and infertility treatments were at the focal point of the metasynthesis, studies with same-sex or single women going through IVF were excluded from the selection.

Search strategy
The studies were searched for in Google Scholar, PubMed, Cinhal and PsychInfo (Appendix 1).SPIDER (sample, phenomenon of interest, design, evaluation, research type) search strategy was applied [17] (Appendix 2).Before choosing the articles to be included to the metasynthesis, 447 article titles were read in the search result section of each database, and 56 abstract were read to assure that the studies qualified and met the aim of this metasynthesis.Duplicates were excluded.A total of 27 articles were read and from these, eight were excluded due to either not being peer-reviewed or ethically approved (Appendix 3).A total of 19 were quality assessed according to the JBI Critical Appraisal Checklist for Qualitative Research and all qualified to be included (Appendix 3).All other studies were excluded because of poor quality, no ethical approval and/or not aligning with the aim of this metasynthesis (Appendix 3).

Quality assessment
The research studies were quality assured through the Joanna Briggs Institute Critical Appraisal Checklist [18] to ensure highest methodological quality, trustworthiness, relevance, and credibility (Appendix 4).The quality assessment also aimed to investigate if any biases in design, conduct and analysis were addressed, and to make sure that the studies had a high level of trustworthiness.For qualitative studies, the tool included assessment of congruity between stated philosophical perspective and methodology.Thereafter an assessment of the congruity between the methodology and research question, methods used to collect data, analysis, and interpretation of data took place.Furthermore, checking that the researchers had stated where they were located culturally or theoretically was checked alongside checking if the influence of the researcher on the research and vice versa was addressed.Another important assessment was if the participants voices were adequately represented, if there was ethical approval and finally, if the conclusions in the study flowed from the analysis of the data.The total number of articles that got a high-quality score were 19 out of the chosen articles (Appendix 5).See Fig. 1 for the PRISMA flow chart, overviewing the literature search and quality assessment.

Data synthesis
To find patterns, similarities, and differences, in experiences and behaviors, a meta-ethnographic approach was used for the synthesis [19].In the process of data extraction and analysis, a matrix was created to get an overview of the studies.This matrix included text segments, metaphors, from each primary study to get a comparable overview of the core concepts [20].To find the correlations between the studies, text segments were coordinated and placed horizontally to get a clear overview of the correlation between the findings in the primary study.Through this visualization, similarities and contrast were easy to find and metaphors created.Thereafter, a translation of the metaphors into each other furthered the analysis stage in an iterative manner, until the similarities, and lack thereof, were clear and were merged.

Purpose and existence
The topic of one's existence and purpose in life was clearly expressed by many women who felt a sense of uselessness and an all-encompassing and overwhelming sense of being "colored" by the infertility journey [21][22][23][24].Women's sense of identity and purpose were negatively affected by infertility and one of the women is questioning the purpose of her existence if she was not going to have a child [23].Women also described infertility as being "unwomanly" and a sense of inadequacy and worthlessness was present in these women [24][25][26].

Uncertainty and lack of control
The women expressed both a sense of uncertainty and lack of control.This pertained to the overall outcome of the infertility journey and the outcomes of treatment, not knowing what the end result would be, and if there will be a baby at the end of a long journey [21,23,[27][28][29][30][31].The lack of control was related to the lack of autonomy, being dependent on someone or something else and being controlled by the health care system [21,26,32].

The physical pain caused by invasive treatments and medication
Just as any life-encompassing disease and treatment, the infertility journey and treatments caused physical discomfort and embodied experiences of pain and hormonal imbalances in women [26,30,[21][22][23].Beside the emotional trauma, the studies showed that psychosomatic trauma and pain was experienced due to the actual infertility treatments, which resulted in poorer libido, a loss of connection with the body, and hormonal fluctuations that both impacted the emotional and physical state [22,30].

Loss and grief
Another identified theme was life-grief, which revolved around being childless, not being able to reproduce and not being able to carry forward one's family line [33].Women also experienced being haunted by their memories of their treatment and had a hard time recovering from their IVF loss [8].Despair and psychological torture caused insomnia, frustration, fear and anxiety, and adjustment to the treatments was not easy [22,[26][27].Another aspect was the psychological effect that an embryo-loss had during treatments due to, as one of the participants described, the sense that the embryo was a material representation of the possible future child [30].The loss of this is thus experienced as a loss of a child and is as painful as mourning a child in their experience, within our outside of the womb.Another woman experienced childlessness as a form of pain and that the fertilized egg was indeed experienced as a child, and when menstruation came, it was experienced as a miscarriage no matter the age of the embryo [33].The sense of loss that was expressed by the women in the studies resulted in a mourning and grief similar to the one that occurs when there is a physical loss of a loved one [25].

Loneliness and isolation
The experience of infertility and going through treatments was widely described as a lonely road where disclosure was not always a comfortable choice due to stigmatization and the fear of judgment [24][25]28,31,34].The grief was also a lonely process for many as they experienced that others around them, who did not have the same experience, could not fully understand the vast fullness of the grief and loss experienced due to infertility and treatment failures [23][24]28,35].The loneliness was also experienced after failed treatments, when the health care system no longer provided support, and they felt abandoned in their grief [34].Another common issue that arose in women was the difficulty relating, engaging and being around other "fertile" women with their own children and thereby more isolation was created [23].A woman admitted that she felt more comfortable sharing her story with women going through the same process and that "childless women understand each other" [28, 7, pg. 532].

Partnership support
Tension and negative feelings like stress created some discord in the marriage of some of the women, and one woman expressed that the experience tested people's relationships to the limit [21].Women reported that they had received support from partners in terms of being accompanied to the clinic, assuming housework and taking care of them at home which also helped with their wellbeing [22].Some women even felt that they had experienced a deeper intimacy with their partner as they were going through this journey together [32].

Sex life
The studies show how the infertility journey and treatments affected women's sex lives and libido negatively [27,30,[36][37].The loss of spontaneity, the planning of intercourse around the cycles, paired with side effects due to the hormonal medication, all lead to a decrease in libido.Some also experienced vaginal dryness and sensitive breasts [30].Women reported less pleasure and a decrease in sexual activity and in two cases, the women had not had sex in years due to their infertility journey [30].

The lack of psychological support
The women in the studies expressed a lack of emotional and psychological support from the health care staff and system [25,27,32,34,[21][22][23][36][37][38].In one of the studies, the majority of the participants reported that they wished to have counseling and more information before, during and after treatments [35].Women reported that no counseling was given by physicians and that the psychological effects of IVF treatment were overlooked [21,35].The women also reported that there was a lack of support when it came to handling the grief after IVF failure and that it was not until they ended treatment that they understood that this type of support was truly necessary [25].

Not being fully informed
Women reported not knowing the full spectrum of treatment options and the medication that they received, and that even some of the health care staff lacked knowledge in this area [25,35,38].Women also felt uninformed about the long-term effects of treatment, on themselves and on their fetus and possible child [29,34,[38][39].Concerns were expressed around the health impact of ovarian hyperstimulation syndrome and fear of breast and uterine cancer as result of the hormonal treatment of IVF [38].Furthermore, women expressed that they had concerns about their fertility investigation, feeling that they had not been fully evaluated and examined in regard to unexplained infertility [25].Women explained that the lack of information actually deepened the stress and that the doctors should explain everything from the very beginning to give an indication of the risks, chances and possibilities [38].

Dehumanization and lack of compassion from healthcare professionals
Women reported a sense of dehumanization when going through treatments and treated in a condescending way [21].They felt that they had very limited time for inquiries at the doctor appointments and a lack of involvement in the decision making in their healthcare [22].They experienced a careless healthcare environment which was unempathetic, lacking of sensitivity of the emotional impact it had, as well as little caring communication [27].This led to a lack of trust and not disclosing fully how they were feeling and thinking to their healthcare professionals [36].The physical aspects of infertility were focused on solely by the physicians with little sensitivity to the personal and emotional experience, which led to further isolation [34].Insensitive and impersonal care paired with the lack of guidance toward self-help practices and support groups, all colored the experience for the women in a negative way [23].

The lack of financial support
Women experienced that there were not enough governmental policies that supported them and that they needed to use sick days and leaves during the treatment days [36].They also experienced a lack of support from the government when it came to finances, and the treatment led for some to financial difficulties [28].

Discussion
The results of this metasynthesis provide evidence that the infertility journey and infertility treatment have a physical, psychological, emotional, sexual and spiritual impact on women's lives.On a personal level it causes trauma and grief, and on a relational level it causes distress in the relationship with the intimate partner and others in the woman's life.Finally, the health care system and society does not provide adequate support to women with infertility and they feel failed and dehumanized by the healthcare system.
The reproductive trauma that infertility and infertility treatment instill causes an existential crisis alongside grief, pain and loss.In line with this finding, Diamond [40] explains that the reproductive trauma derives from the disruption of one's personal identity and story that one carries about motherhood and becoming a mother, from childhood and adolescence, into adulthood.Another aspect of the trauma is reproductive loss, which refers to everything from termination of a pregnancy, miscarriage, perinatal death, stillbirth, neonatal death, to failed IVF cycles [41].Such loss was also expressed by women in this metasynthesis.
The results also indicate that the intimate relationship with partners can be strained due to the long treatments, stressful appointments and the change of mood and libido that occurs due to the trauma of infertility, medications and treatments.A solution to this has been presented in a study by Read et al. [42], where couples expressed a desire for counseling to be able to talk through the infertility experience and instead grow stronger by this experience.
Furthermore, the metasynthesis shows that there is a lack of support in society and by the healthcare system and from healthcare professionals.This experience is reflected in a study by Malin et al. [43], which showed that that dissatisfaction with treatment is correlated to a poor relationship with health care staff.The study emphasized the importance for a physician to have time for the woman and listen, as well as having a correct diagnosis and selecting appropriate care.In addition, Read et al. [42] who investigated what type of support couples in infertility treatment want and need, showed that seeing a psychologist, support groups, peer members, online forums and information resources was sought for to resolve stress, relationship issues, sharing experiences with others and getting practical information.
Women's experience with healthcare professionals, lacking empathy, compassion and understanding, was a repeated incident in this metasynthesis.Read et al. [42] highlight these experiences in their study, which shows that negative experiences in treatment are connected not only to the outcome, but also the experience with physicians being unempathetic, disrespectful, impolite and objecting the woman to only her "diagnosis", ignoring personal/individual and subjective aspects of childlessness, and the importance of woman-centered-care.The same study also outlined physicians rushing and being in a hurry at the appointments, hurting the women in examination, as well as giving blunt unempathetic answers.
Qualitative studies are interpretative in their nature and discernment is important throughout the process.This metasynthesis was based on qualitative articles with high quality according to the JBI Critical Appraisal Checklist for Qualitative Research [18].The four ethical principles from the Helsinki Declaration [44] were foundational for this study and were taken into consideration when searching for and reading the studies.The strengths of this study and the methodology used are that through this metasynthesis of 19 studies, we have been able to capture over 500 women's experiences if infertility and IVF, as well as that we have the insights from 12 different countries and cultures, which makes this metasynthesis more diverse and inclusive than am empirical qualitative study.As we know it, there is to date no other metasynthesis with meta-ethnographic approach of women's experience with infertility and IVF.In the case of countries with a heterogeneous population, the authors did not always disclose the cultural or ethnic backgrounds of the participants.This makes it hard to know if the studies were indeed inclusive enough to reflect the varieties of cultural and ethnic backgrounds that are present.The matter of transferability would have been strengthened if there was an equal proportion between high, middleand low-income countries.Regrettably, when searching for articles containing both infertility experience and IVF, naturally most studies were from countries where treatment is more accessible.This creates a discrepancy when it comes to representation and inclusion, which is a prevalent theme in the history of medicine and healthcare research and when it comes to selection bias.
The results of this metasynthesis also provide insights of the lack of knowledge, insights and maybe also the lack of interest from healthcare providers to truly understand the impact that infertility, infertility evaluation and treatment has.Empathy, care and counseling can be the key to assert more comfort to these women and to provide the services that they deserve and is the foundation of successful woman-centeredcare.

Conclusions
The results of this metasynthesis provides a foundation for deeper understanding of women's experiences of infertility and treatment that policy makers, the healthcare system and healthcare providers need in order to provide necessary services and support.
Infertility is a silent "disease" not fully understood, supported, or communicated in society.It has major implications for those that experience it, and women are carrying the burden of stigmatization, trauma, grief, invasive treatments, and lack of empathy, support and compassion.The trauma of infertility needs to be addressed in the level of global sexual and reproductive health and rights, with strategies and policies in place to provide adequate services in terms of physical, emotional, mental, psychological, and financial support.
Infertility treatments should be understood as essential and lifealtering, for the better or worse.Women should also be screened, just as in the case of new mothers that have given birth, during fertility investigation and treatment for anxiety, depression and PTSD.It is essential that services are not only focused on the physical aspects of infertility, but that they are more holistic and go beyond only the physical.Furthermore, health care professionals, on an individual level, must be able to provide compassionate and empathetic care and understand that failure of this can increase the trauma that the women are already experiencing.Giving the adequate information and time, empowering women in the process and making sure that they are met with the time and support that they have the right to, have to be part of the care that is given.This is a sexual and reproductive right.This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Declaration of Competing Interest
The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.Appendix 2. SPIDER search strategy S "women" or "woman" PI "infertility" or "childlessness" or "unexplained infertility" or "involuntary childlessness" or "IVF" or "in vitro fertilization" or "in vitro" or "infertility treatment""infertility" or "IVF" or "infertility treatment" or "assisted reproductive technology" D "interview" or "focus group" E "experience" or "lived experience" or "feeling" or "challenges" or "wellbeing" or "mental health" or "grief" or "mourning" R "qualitative" "thematic" "content analysis" "ethnographic""phylogeographic" "hermeneutical analysis" The increasing factors which emerged from the data contain "spiritual source", "family interaction and support" and "information through the media", and decreasing factors contain "nature of treatments" and "negatively oriented mind".

Bloom, T. (2021)
This study aimed to describe women's experiences regarding infertility and explore factors that women find helpful to alleviate their fertilityrelated stressors.
Mixed methods.Qualitative Indepth interviews, qualitative description analysis.
12 "…significant stressors that women encounter in their fertility journey including a desire for empathetic, under-standable, and effective treatment and support, and the crucial role of healthcare providers"

Not ethically approved
Webair, H.This study aims to explore and describe the phenomenon of women with infertility and to enhance understanding on how infertility affects their lives and the specific social consequence they encountered.
Qualitative phenomenological design.Thematic analysis.

13
Four themes emerged in the study, including (i) non-escapable cultural burden in Chinese family; (ii) psychological distress: isolation caused by envy; (iii) disappointment towards reproductive health services; and (iv) self-compassion and religion as coping strategies.
The aim 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 before.
Qualitative.In-depth interviews.Theme analysis.

14
The childlessness had had a strong impact on all the women's lives and was for all a major life theme.The effects were experienced both on a personal level and on interpersonal and social levels.
Not aligned with the aim of the synthesis.

Daniluk, J. C. (2001)
This study explored how couples who have been unsuccessful in achieving a viable pregnancy through medical fertility treatments live with, and retrospectively make sense of, their experiences with medical treatment.

couples
These findings provide some direction regarding the needs of infertile couples for information, support, and advocacy during the pursuit of medical solutions to their infertility.
Not aligned with the aim of the synthesis.

Bergart, A. M. (2000)
To offer guidelines for social workers and medical professionals to meet the needs if infertility patients after failed interventions.

Interviews
The findings of this study suggest that women often need help with the intense emotions stimulated by the treatment experience.

No approval stated
Wilkes, S., Hall, N., Crosland, A., The aim of this study was to explore the reasons underpinning the attitudes and perceptions of the primary care patient experience of infertility manage-ment in Northumberland and Tyne and Wear in North-East England.

22
Factors that influenced a couple's experi-ence of infertility management were personal and professional relationships, patient autonomy in decision making and access to services.

Appendix 4 .
JBI Critical Appraisal Checklist for Qualitative research