Health, Spirituality and Medical Ethics

Introduction

Infertility, clinically defined as the inability of a couple to achieve pregnancy after 12 months of regular sexual intercourse without contraception, is a global health problem that affects approximately 10-15% of couples worldwide [1]. In Indonesia, the prevalence of primary infertility is reported to be 15-25% in couples of childbearing age, signaling a significant challenge in reproductive health. The complexity of infertility includes medical, psychological, and social aspects that affect the well-being of individuals, particularly women [2].

Medical factors that cause infertility in women include ovulation disorders, fallopian tube obstruction, endometriosis, and hormonal disorders [3]. It is not enough to understand infertility simply by identifying its biological etiology. It is also necessary to consider the psychosocial impact of women’s experiences. Previous research has shown that women diagnosed with infertility often experience significant psychological stress, such as feelings of low self-esteem, guilt, and depression due to the inability to meet social expectations of having children [4]. Many societies, including Indonesia, consider motherhood to be central to female identity; therefore, failure to conceive often triggers deep social stigma from both family and community [5, 6].

Infertility management involves medical interventions and psychological support. Assisted reproductive technology (ART) procedures, such as intrauterine insemination (IUI) and in vitro fertilization (IVF), provide hope for couples experiencing infertility [7]. However, these procedures are costly and require emotional readiness, as success is not always guaranteed [8]. In addition, support from partners, families, and health professionals are essential for infertility management. This support helps reduce women’s emotional burdens and increases the chances of successful treatment [9].

This study aimed to explore the Indonesian women’s experiences managing infertility. The focus was on the barriers faced and forms of support received. This study aims to provide a more comprehensive understanding of the emotional, social, and cultural challenges that influence infertility management. It also seeks to identify factors that facilitate women’s dealing with infertility, including access to responsive health services and adequate psychosocial support [10, 11].

The results of this study are expected to provide significant insights for healthcare providers. The development of more comprehensive interventions must address the clinical aspects of infertility and its psychosocial impact [12]. A more holistic approach to infertility management is expected to support women’s overall well-being and improve treatment success.

Methods

Research design

This study used a qualitative approach with in-depth individual interviews to explore women’s experiences managing infertility. A homogeneous purposive sampling strategy was used to recruit participants with similar infertility experience. Participants were recruited through health workers at infertility clinics and social media forums focusing on infertility. Each potential participant was given an invitation letter and a research information sheet. The interviews were conducted individually using a semi-structured format, allowing participants to share their experiences freely while ensuring that key topics were addressed. The interview guide included questions, such as: ‘Can you describe your initial reaction to receiving an infertility diagnosis? What strategies have you used to manage infertility, including medical treatment and lifestyle changes? How have emotional and psychological support systems, such as family, friends, or healthcare professionals, played a role in your experience? What challenges or barriers have you encountered in managing infertility? How have you managed your health and well-being post-treatment? What role did healthcare professionals play in supporting you during this journey?. This study was conducted at several infertility clinics in Yogyakarta City, Indonesia. Yogyakarta is a major city known for its healthcare facilities and cultural significance, making it a relevant setting for exploring women’s infertility experience. The study context included both public and private infertility clinics, ensuring a diverse representation of participants from different socioeconomic backgrounds.

Participants

The main inclusion criteria for participants were women with a history of infertility in the last two years, over 18 years old, and residing in Yogyakarta City. A total of 12 women met the inclusion criteria and showed interest in participating in this study. However, two declined due to household responsibilities, and two did not complete the study due to busy schedules; therefore, only eight participants completed the study. Given Indonesia’s cultural and religious context, where most of the population is Muslim, participants’ religious backgrounds were also considered in the discussions to provide a deeper understanding of their experiences.

Data collection

Data were collected through in-depth interviews using a prepared interview guide. The interviews were conducted face-to-face between September 2024 and lasted an average of 30-45 minutes. The location was adjusted according to participants’ preferences to ensure their comfort. Interviews were recorded using an audio recorder, and field notes were taken to ensure accurate details.

Data analysis

Data were analyzed using Collaizi’s thematic method with the assistance of NVivo software, version 14 for data organization and coding. Researchers read interview transcripts and listened to recordings to identify key themes related to women’s experiences of infertility management. Sentences and keywords were identified, coded, and categorized into subthemes and themes using NVivo to facilitate data management and organization. After analysis, the study’s results were verified through member checking, where the results of the interviews were fed back to the participants for approval and clarification.

Trustworthiness

To increase the reliability and validity of the study, the research team consulted experts in the field of infertility, including obstetricians, gynaecologists, and infertility consultants. Expert input was used to develop relevant and in-depth interview questions. The guide was used to explore participants’ in-depth experiences and understand the challenges and support they received during the infertility management process.

Results

Table 1 presents the participants’ characteristics. The participants’ ages ranged from 28 to 40 years, with an average age of approximately 32 years. Infertility can occur at various ages, and older age is often associated with additional challenges in achieving pregnancy. Some participants reported previous miscarriages, which could have contributed to infertility or heightened anxiety related to conception. All participants in this study reported experiencing primary infertility, defined as the inability to conceive despite regular unprotected intercourse. This indicates that none of the participants had previously given birth and were facing difficulties in achieving pregnancy. Table 1 presents the main findings of this study, including key concepts and subcategories derived from the participants’ experiences.

The duration of infertility varied from 1 to 4 years. A longer duration of infertility may suggest a more complex issue, necessitating an intensive treatment strategy. All participants had experienced various treatments, such as hormonal therapy, IVF, and, in some cases, surgery. The underlying cause and severity of the condition underscore the need for a tailored approach to managing infertility.

Challenges at diagnosis

Participants exhibited a range of reactions to their infertility diagnosis, with many experiencing emotional distress, particularly those facing infertility for the first time or having underlying health conditions. Participants shared varied responses when asked about their initial reactions to the diagnosis.

“I was initially devastated, especially since it was our first try” (Participant [P]. 5).

“My concern was more about the impact on overall health rather than just infertility” (P. 3).

In contrast, those with prior experience or a family history of infertility felt more prepared and less anxious:

“Having been through this before, I feel calmer” (P. 7).

“My family also experienced similar problems, so I already knew a little about what to expect” (P. 2).

Challenges associated with treatment

Participants adopted various strategies to manage infertility, including medical interventions and lifestyle modifications. In response to questions about their management strategies, all participants reported undergoing some form of ART or hormonal therapy, often combining treatments to suit their specific needs.

“I underwent IVF, which seemed to be the only viable option after trying other methods” (P. 6). “Hormonal therapy was initially prescribed before we switched to IVF” (P. 4).

Additionally, participants adjusted their lifestyles to support their treatment and overall well-being.

“I adjusted my diet to include more whole grains and vegetables to improve my health” (P. 1). “Incorporating regular exercise helped me manage stress and overall health” (P. 7).

Emotional and psychological challenges

When asked about emotional and psychological support, participants emphasized the importance of family, friends, and healthcare professionals in managing infertility. Emotional and practical involvement of family members is often considered beneficial.

“My partner was my biggest support throughout this journey, helping with emotional and logistical aspects” (P. 5).

Access to counseling and support groups provides reassurance and additional information.

“Regular consultations with my specialist help me stay informed and positive” (P. 3).

Financial and psychological barriers

Participants identified financial stress and emotional burdens as significant barriers to infertility management. The cost of treatment was a common concern, along with uncertainty regarding the process.

“The waiting and uncertainty are the most difficult parts” (P. 2).

“The financial aspect is often overwhelming, especially with ongoing treatment” (P. 6).

Challenges after treatment

In response to questions about post-treatment management, participants described various approaches to maintaining their health and well-being. Many continued health monitoring and made lifestyle adjustments to sustain fertility and prevent complications. Several reported increased emotional resilience and adaptability.

“I continue to have a healthy diet and exercise as a preventive measure” (P. 1).

“This journey has made me more resilient and appreciative of small successes” (P. 4).

Healthcare professionals’ role

Healthcare professionals play a crucial role in supporting participants throughout their journey. When asked about professional support, participants highlighted the guidance and recommendations they received for lifestyle maintenance and follow-up care.

“My doctor advised me to maintain a balanced lifestyle and have regular check-ups” (P. 7).

The findings of this study highlight the complexity of infertility management, emphasizing the challenges faced at different stages. Responses to the interview questions illustrated the multifaceted nature of infertility care, which requires a combination of personalized medical treatments, emotional and psychological support, and lifestyle adjustments. The involvement of family and healthcare professionals is crucial in assisting individuals through this process. This study also underscores the need for a more holistic approach to infertility care, addressing financial and emotional burdens alongside medical treatment to improve overall well-being.

Discussion

Infertility can be a significant psychological burden for women. Participants in this study explained that they felt shocked, fearful, and anxious about their health and possible complications [9, 12]. Particularly for those who have not had children and who face additional health conditions such as previous miscarriages, this emotional distress can be more severe. The experiences of the participants in this study align with research showing that infertility is often associated with profound emotional stress and uncertainty about the future [13, 14].

Infertility can trigger a significant stress response, affecting women’s mental and emotional health. Various factors, including uncertainty about the future and concerns about reproductive health trigger this stress [8]. On a biological level, chronic stress can affect the endocrine system, causing further hormonal disruption, which can exacerbate infertility issues [4, 6, 15]. Research shows that stress can affect hypothalamic-pituitary-ovarian function and disrupt the regulation of hormones necessary for ovulation and fertility [6, 16].

The health belief model suggests that individuals who feel vulnerable and sick can be driven to act and behave healthily. In this study, some participants began to adapt to their diagnosis by seeking more information about infertility and trying to live a healthy lifestyle as recommended by medical personnel [5]. These lifestyle adjustments included changes in diet, exercise, and medical therapies [11]. Hormonal treatment and ART, such as IVF, is a commonly used method to manage infertility. The mechanisms of these therapies involve hormonal modification to stimulate ovulation and increase the chances of pregnancy [17].

Hormone therapy aims to regulate the menstrual cycle and improve egg quality. Drugs, such as clomiphene citrate, gonadotropins, and metformin, are often used to treat ovulation problems [17, 18]. Assisted reproductive technologies, such as IUI and IVF involve stimulating the ovaries to produce multiple eggs and then fertilizing the eggs in the laboratory before implantation into the uterus. These mechanisms increase the chances of pregnancy by addressing various issues that may hinder conception, such as ovulation problems, sperm quality, or structural problems in the reproductive tract [7, 17].

Emotional support from families and healthcare professionals is vital in infertility management. Participants reported that support from their partners and other family members helped them immensely during treatment. Emotional and practical support from family is often an essential factor in coping with the stress associated with infertility [13, 19]. Scientifically, social support can affect the autonomic nervous system and immune system, which can help reduce stress levels and improve psychological well-being [9, 13]. Family support, especially from a partner, can help reduce emotional burden and improve adherence to treatment plans. Research shows that social support can improve the quality of life of patients with infertility and reduce feelings of isolation and stress. This support can facilitate access to medical information and assist in treatment-related decision-making. These mechanisms reduce stress responses and increase motivation and adherence to treatment [9].

Participants also faced several challenges, including emotional stress and financial burdens. Managing the emotional burden of infertility was a significant challenge for many participants, with concerns about the cost of treatment being common. Research shows that financial burden can significantly hinder the adoption of necessary medical care. The high cost of ART and medications often limits access to essential care and adds to the psychological burden [9,. The financial burden of infertility treatment may influence a patient’s decision to choose a treatment method. Health insurance and out-of-pocket costs may affect accessibility to necessary therapies. These mechanisms suggest that financial concerns may lead to suboptimal treatment decisions and increased associated stress. Therefore, financial assistance or subsidy programs can help reduce financial barriers and improve access to necessary treatment .

Participants reported monitoring their health post-treatment and making lifestyle adjustments to prevent recurrence. Successful management of infertility often relies on a combination of medical and non-medical strategies tailored to individual needs. Lifestyle adjustments, such as a healthy diet and exercise, improve general health and support treatment effectiveness. These mechanisms include metabolism and hormonal balance improvements that may support successful infertility treatment [11, 17]. Lifestyle adjustments may involve dietary changes, increased physical activity, and stress management. A healthy diet can help manage weight and improve reproductive health, while exercise can improve cardiovascular and hormonal health. These mechanisms support hormonal balance and enhance metabolism, essential for reproductive health. In addition, stress management through relaxation techniques or psychological therapies may help reduce the negative impact of chronic stress on fertility [7, 11, 17].

These studies demonstrate that infertility management involves multiple aspects, including personalized treatment, emotional support, and lifestyle modification. Support from both families and healthcare professionals plays a vital role in helping individuals navigate these challenges. These findings can guide health professionals in providing more effective and comprehensive care for women experiencing infertility. However, this study has limitations, such as potential biases in participant self-reporting and the cultural context that may affect generalizability. Greater efforts are needed to overcome barriers participants face and enhance the support provided throughout the treatment process.

Conclusion

This study revealed that women facing infertility experience a three-stage challenge: the emotional burden, financial strain, and the complexities of treatment adherence. The psychological impact includes emotional distress, anxiety, and social pressure, which can affect overall well-being. Financial challenges arise from the high cost of medical treatment, including hormonal therapy and ART, which may limit access to necessary care. Additionally, maintaining long-term adherence to treatment is influenced by both financial constraints and the need for continuous emotional and informational support. To improve infertility management, strengthening emotional support systems from family, communities, and healthcare providers is crucial. Expanding financial assistance programs can help reduce treatment barriers, while comprehensive health education on lifestyle modifications, such as balanced nutrition and regular exercise can enhance treatment effectiveness. By addressing these three major challenges, healthcare systems can improve accessibility, reduce psychological burden, and optimize treatment outcomes for women experiencing infertility.

Ethical Considerations

Compliance with ethical guidelines

This study was approved by the Ethics Committee of Health Polytechnic, Indonesia (Code: 219/EC/UK/2024).

Funding

This research did not receive any grant from funding agencies in the public, commercial, or non-profit sectors.

Authors' contributions

Data collection: Erna Yovi Kurniawati and Mariza Mustika Dewi; data analysis: Erna Yovi Kurniawati and Zaw Myo Hein; Conceptualization, study design, and manuscript drafting: Erna Yovi Kurniawati; Results interpretation, and manuscript’s critical revision: Zaw Myo Hein; Literature review: Mariza Mustika Dewi; Final approval: All authors.

Conflict of interest

The authors declared no conflict of interest.

Acknowledgments

The authors thank the participants for sharing their experiences, the healthcare professionals and staff for their support in recruitment, the research team for their contributions, and their institution for providing resources and guidance.