The role of spirituality in the well-being of families with children with congenital heart disease: scoping review

Introduction

Congenital heart disease (CHD) is the most common congenital anomaly and the leading cause of death due to malformations in the first year of life (1). Significant technological advancements have led to a deeper understanding of fetal cardiology in recent years, resulting in increasingly earlier diagnoses (1,2). The stress experienced by family members who receive this diagnosis stems from the uncertainty about the child’s health prospects. Consequently, there is a critical need for comprehensive counseling for these families, starting from the moment of diagnosis, which should address medical, psychological, and social aspects (3,4).

Family members often undergo a grief reaction characterized by stages such as shock, denial, anger (including questioning the diagnosis), guilt, and sadness. During this process, they may also experience a desire or “bargaining” for a miraculous resolution of the heart disease (3,5). The diagnosis of CHD has a significant psychological impact on parents, with studies suggesting that between 25% and 50% of parents of children with severe CHD report symptoms of anxiety or depression (6). Regardless of the type of CHD and the child’s age, families face considerable stress in caring for their children, leading to emotional, financial, and familial strain (6).

Spirituality has become increasingly crucial in mental health as a source of resilience and comfort during challenging times (7). Therefore, spiritual care is an essential aspect of healthcare that should be provided without discrimination or religious imposition (8).

The purpose of this scoping review was to synthesize existing literature on the role of spirituality in the well-being of family members of children with CHD and to identify gaps in current research and pave the way for future studies. We present this article in accordance with the PRISMA-ScR reporting checklist (available at https://tp.amegroups.com/article/view/10.21037/tp-24-134/rc).

Methods

We followed the principles outlined by Arksey and O’Malley (9) and recommended by the Joanna Briggs Institute.

This method consisted of five steps: identifying the research question, finding relevant studies, selecting studies, mapping data, and presenting results. Since this was a review, the ethics committee’s approval was unnecessary.

Research question identification

The research question was: “Is there existing literature on the role of spirituality on the well-being of family members of children with CHD?”

Identification of relevant trials

Four databases were used: Medline, Embase, Lilacs, and Scielo, during January and March 2024. The search strategy was developed with the descriptors used were: “congenital heart disease” and “spirituality” (Table 1). All identified studies were transferred to the Rayyan system for analysis in an organized and secure manner. The protocol for this scoping review was registered with the Open Science Framework (https://doi.org/10.17605/OSF.IO/73SDG).

Selection of studies

Inclusion criteria were: studies addressing how different forms of spirituality, such as religion, personal beliefs, or spiritual practices, can influence emotional well-being, quality of life, or coping with illness; papers in any language qualitative or quantitative studies. The studies were selection until 2024. Articles without full text, book chapters, lectures, conference abstracts, review articles, and editorials were excluded.

The screening process began with the removal of duplicate articles. Two reviewers (master’s student in health sciences) worked together to assess the titles and abstracts of all publications based on the eligibility criteria. After this first screening, the full texts of the selected studies were thoroughly reviewed. The disagreements were resolved through a third reviewer (fetal and pediatric cardiologist). Additionally, cross-referencing and an active search for relevant articles were conducted.

Data mapping

The following variables were collected from the included studies: author details, year of publication, study location, objectives, methodology, participants of the study, and main results. The development of an Excel data extraction form was an organized practice to collect relevant information from the studies.

Presentation of findings

The results of this scoping review were presented in narrative and tables. The main findings of the studies were presented in tables according to the main themes addressed. This thematic approach was divided into the following segments: influence of spirituality on mental and emotional well-being; cultural and religious differences; incorporating spirituality into health care; and supporting decision-making.

Results

The scoping review included a total of 17 studies that address the topic of spirituality in the context of CHD. The studies analyzed provided a comprehensive view of the role of spirituality in the well-being of family members of children with CHD.

The initial search of the four databases Medline (n=8), Embase (n=62), Lilacs (n=1) and Scielo (n=1) yielded a total of 72 articles. After removal of 2 duplicate articles and evaluation of titles and abstracts, 59 articles were excluded. Cross-referencing analysis was performed, and at the end of the screening process, 17 articles remained for in-depth review. This final number represents the studies considered eligible for inclusion in the review (Figure 1).

Figure 1 Study’s flowchart.

Table 2 provides a detailed overview of the 17 eligible articles, including author details, year of publication, study location, objectives, methodology, participants of the study, and main results.

The majority of studies have been conducted in the past 10 years, indicating a growing interest in understanding the interaction between spirituality and family members coping with CHD (6,10,11,13,14,16,18-23). The first study in this scoping review is a 1999 case report that highlights the role of spirituality in a family that has a 3-month-old child with CHD (8). It emphasizes the dilemma between the family’s spiritual beliefs and the health professionals’ intentions regarding the child’s treatment. This study illustrated how spiritual beliefs influence decision-making and interactions between families and medical teams.

The studies were conducted in various regions around the world, including USA (7,8,12-15,19,20,23), China (18,22), Iran (6), Sweden (17), and Brazil (10,16). However, additional studies are required in other low-income countries to enhance our understanding of cultural and socioeconomic factors. This will provide a more comprehensive global perspective on the role of spirituality in the context of CHD.

Considering the methodology, we recorded 12 qualitative studies (6,10-12,14,16-21,23), 3 descriptive (7,15,22), 1 cross-sectional (13), and 1 case report (8) (Table 2). The studies typically employ a qualitative methodology, utilizing semi-structured interviews and content analysis to delve into the experiences and perceptions of family members.

Participants mainly included parents (mothers and fathers) of children with CHD; most were studies of complex CHD conditions requiring multiple surgeries and long-term care. The studies explored various religious traditions, including Christianity, Islam, Buddhism, and non-denominational spiritual practices (6,8,10,18,19,21). They highlighted the influence of different belief systems on family members’ coping strategies and emotional well-being. This diversity in culture and religion enriches our comprehension of the role of spirituality in caring for children with CHD.

In the scoping review, 17 studies showed that spirituality plays a crucial role as a coping strategy for parents and families of children with CHD. Spirituality provides significant emotional support (7,10,12,14-16,18,20-23), aiding parents in making difficult decisions such as terminating a pregnancy (11,23) and treating illness (8). Furthermore, spirituality has been found to reduce stress, depression, and grief, while also offering understanding, hope, and comfort (7,10,12,14-16,18,20-23). The studies also emphasized that spirituality improved relationships between medical staff and family members (13), leading to more effective communication and compassionate, holistic care.

Observing the primary findings of the 17 studies, we identified similarities in certain topics, allowing us to categorize the approach of these articles included in our scoping review into four themes: the impact of spirituality on mental and emotional well-being; cultural and religious diversities; integration of spirituality into healthcare; and its assistance in decision making. In Table 3, we have reorganized the articles included based on their main results regarding the role of spirituality in family members of children with CHD.

Discussion

This scoping review compiled existing literature on the impact of spirituality on the well-being of family members of children with CHD. We identified 17 studies, highlighting the paucity of literature on this topic. Recognition of the lack of research in this area emphasizes the need for more studies on spirituality in healthcare related to CHD. Furthermore, the dissemination of knowledge already generated by these studies can help us better understand the role of spirituality in this context.

The emotions of parents of children diagnosed with CHD do not develop in a linear fashion (15). This review highlights that families of children with CHD use a variety of coping strategies, including spirituality, acceptance, optimism, patience, and management of psychological needs, based on their beliefs, attitudes, skills, and available resources in the face of caregiving stress (3). Dissemination of the knowledge generated by these studies can contribute to a better understanding of diagnosis, treatment, follow-up, and other aspects related to CHD in this specific context.

According to the thematic approach we used in the results, we will proceed with our discussion.

Impact of spirituality on mental and emotional health

Research has shown that spirituality is a vital source of mental and emotional strength for family members of children with CHD (7,10,12,14-16,18,20-23). The studies reviewed highlight that faith and spiritual practices provide a strong emotional foundation, helping parents cope with the stress and anxiety associated with CHD diagnosis and treatment. Strong spiritual beliefs enable parents to find meaning and purpose in adversity, offering hope and resilience during challenging times (10).

The study by Desai et al. (7) emphasized the collaboration between chaplains and healthcare providers in offering spiritual support tailored to the family’s beliefs (7). This supports significantly reduced stress and anxiety, providing families with understanding, hope, and comfort during hospitalization and medical procedures. Similarly, the research by Sira et al. (13) demonstrated that parents who relied on spiritual coping strategies reported higher levels of family integration and optimism (13). This suggests that spirituality not only aids in emotional stability but also fosters a cohesive family environment, which is crucial for managing the long-term challenges of CHD.

Furthermore, the study by Wei et al. (15) described the profound emotional challenges faced by parents during their child’s heart surgery and stay in the pediatric intensive care unit (PICU) (15,23). The findings revealed that spirituality provided essential comfort, strength, and hope, helping parents find meaning during their child’s medical journey. This aligns with the research by Liu et al. (22), which found that positive religious coping methods were associated with lower levels of depression and higher quality of life among parents of infants with CHD (22).

These studies collectively highlight the significant role of spirituality in mitigating adverse emotional outcomes and promoting psychological well-being.

Cultural and religious differences

Including diverse religious and spiritual practices in the reviewed studies underscores the importance of understanding spirituality in a multicultural and multi-faith context (8,11,17,23).

The findings from Gitsels-van der Wal et al. (11) highlight how Islamic beliefs significantly affect decision-making processes among pregnant Muslim women, particularly in the context of antenatal screening and pregnancy termination decisions. This study illustrates the need for healthcare providers to be culturally sensitive and knowledgeable about the religious beliefs of their patients to provide appropriate counseling and support (11,17).

The study by Nakazuru et al. (18) in Japan not only sheds light on the role of Buddhism in helping mothers cope with the stress and uncertainty of their child’s CHD surgery but also provides practical insights for healthcare providers (18). The reliance on Buddhist practices and the sense of spiritual peace and resilience it provides illustrate the profound impact of spirituality on mental and emotional well-being. This highlights the necessity for healthcare systems to incorporate spiritual care tailored to specific cultural and religious contexts, ensuring that support is relevant and meaningful to the families receiving it.

Ladak et al. (21) further emphasizes the critical role of Islam in the lives of parents in Pakistan, particularly in managing unrealistic expectations and the emotional challenges of CHD. The study shows that trust in God and religious coping mechanisms are integral to how these parents navigate the healthcare system and the difficult decisions they face. This underscores the broader need for healthcare providers to respect and integrate spiritual beliefs into the care plans of families from diverse religious backgrounds, facilitating a holistic approach to medical care that encompasses physical, emotional, and spiritual health.

These findings collectively highlight the diverse ways in which spirituality, shaped by various religious beliefs, supports families dealing with CHD. They call for a more inclusive approach in healthcare that respects and incorporates the spiritual dimensions of patient care, recognizing the significant role that religion and spirituality play in coping with severe health conditions. Future research should explore these diverse contexts to understand how best to support the spiritual needs of families from distinct cultural and religious backgrounds.

Integrating spirituality into healthcare

The integration of spirituality into healthcare practices has been shown to significantly enhance the care experience for families of children with CHD. The studies included in this scoping review highlight the importance of a collaborative approach between healthcare providers and spiritual support services in addressing the holistic needs of families.

Desai et al. emphasized the critical role of chaplains and child life specialists in providing spiritual care tailored to the family’s beliefs (7). This collaboration helps reduce stress and anxiety by offering emotional support and easing understanding, hope, and comfort during hospitalization and medical procedures. The presence of chaplains as part of the healthcare team ensures that families receive personalized spiritual support, which is crucial in helping them cope with the challenges associated with CHD.

The study by Holston further underscores the importance of an integrated support system that includes healthcare professionals, extended family, friends, and clergy (14). This comprehensive approach helps families navigate the emotional and psychological challenges of CHD, providing a network of support that addresses their spiritual needs alongside medical care. Healthcare providers who acknowledge and incorporate spiritual care into their practice can build stronger, more empathetic relationships with families, enhancing trust and communication.

Moreover, the research by Wei et al. (15) revealed that parents deeply appreciate the involvement of healthcare providers in spiritual discussions. This engagement not only helps them feel supported and understood, but also fosters a sense of partnership and collaboration between families and the healthcare team. By engaging in conversations about spirituality, healthcare professionals can better understand the values and beliefs of the families they serve, leading to more tailored and compassionate care. This approach not only supports the emotional well-being of parents but also fosters a sense of partnership and collaboration between families and the healthcare team.

Liu et al. (22) found that positive religious coping methods, supported by the healthcare team, were associated with better psychological outcomes for parents. When healthcare providers actively support the spiritual practices of families, it can enhance the overall quality of life and mental health of parents, helping them to navigate the complexities of CHD with greater resilience and hope.

Integrating spirituality into healthcare also involves practical measures, such as providing dedicated spaces for prayer and meditation within healthcare facilities. These spaces are not just physical areas but also symbols of our commitment to the spiritual well-being of families. They offer families a refuge for peace and spiritual support, contributing to their overall well-being during hospital stays. Additionally, training healthcare professionals in spiritual competencies can equip them with the skills to address spiritual issues sensitively and effectively, enhancing the holistic care provided to families.

Overall, the integration of spirituality into healthcare is a powerful tool for the well-being of families dealing with CHD. By empowering healthcare providers to integrate spiritual care into their medical practice, we can offer more comprehensive, compassionate, and patient-centered care. This collaborative approach not only supports the emotional and psychological health of families but also strengthens the therapeutic alliance between healthcare providers and families, ultimately leading to better health outcomes for children with CHD (8). Future research should continue to explore strategies for effectively integrating spirituality into healthcare to further enhance the support provided to these families.

Support for decision-making

Spirituality plays a crucial role in the decision-making process for parents and families of children with CHD. The reviewed studies indicate that faith provides a moral and ethical framework that guides parents’ choices, helping them find clarity and confidence in their decisions.

Research by Gitsels-van der Wal et al. (11) illustrates that religious convictions significantly impact decisions around antenatal screening and potential pregnancy termination. Parents often rely on their faith for guidance, which offers reassurance and a sense of direction during difficult times (11). This underscores the importance of healthcare providers being aware of and sensitive to the spiritual beliefs that influence their patients’ decisions.

Delaney et al. (23) examined how parents choose treatment options for their children with CHD, revealing that spirituality and religious beliefs are critical in determining whether to pursue aggressive treatments, palliative care, or consider termination. Spirituality provides hope and resilience, helping parents make decisions aligned with their values, thus easing the emotional burden of these choices.

Wei et al. (15) found that spirituality is essential during critical periods such as diagnosis and surgery. Parents who lean on their faith report feeling more confident and less anxious about their decisions, which helps them manage the stress and uncertainty of medical treatments.

Liu et al. (22) noted that positive religious coping methods correlate with lower depression levels and higher quality of life among parents of infants with CHD. When parents incorporate spirituality into their decision-making, it enhances their emotional well-being. This suggests that healthcare providers should encourage positive spiritual practices as part of their support.

Additionally, the case study “Baby Aaron and the elders” highlighted the complex interplay between spiritual beliefs and medical decision-making within an Amish community (8). The parents’ refusal of life-saving surgery for their child based on religious grounds illustrates the profound impact of spirituality on their decisions. This case underscores the necessity for healthcare professionals to engage respectfully with families’ spiritual beliefs and to seek collaborative solutions that honor these values while addressing medical needs.

During critical moments, such as initial diagnosis or urgent surgery, spirituality acts as a comforting and guiding force. Trusting in a higher power or seeking counsel through religious practices can provide a sense of control and purpose, offering comfort and relief from the stress and uncertainty of decision-making. This is particularly significant when medical options are complex, and the consequences of decisions are profound.

Furthermore, spiritual support can facilitate communication between families and medical teams, helping align expectations and ensure that decisions reflect medical needs and patients’ spiritual beliefs. Healthcare professionals who recognize and respect the role of spirituality in parents’ decisions can offer more empathetic and personalized care. This enhances the care experience and strengthens trust and collaboration between healthcare providers and families.

This scoping review has provided a comprehensive understanding of CHD and the role that spirituality plays in the lives of parents in terms of coping and challenges faced by families, highlighting the complexity of the scenario and the need for further research on the topic.

Contributions to new research

To better support families of children with CHD, future research should focus on several key areas. Firstly, it is essential to develop and evaluate structured spiritual counseling models. Research should aim to create counseling frameworks that systematically integrate spiritual support into healthcare and assess their effectiveness in improving the emotional and psychological well-being of family members and patient care quality and satisfaction. Secondly, it is necessary to explore the impact of spirituality across diverse cultural and socioeconomic contexts. Comparative studies between developed and developing countries can shed light on cultural variations and the applicability of spiritual support practices in various settings, enriching our approach to global healthcare.

It is essential to conduct longitudinal studies to check how parents’ spiritual beliefs evolve and the ongoing impact on their emotional well-being. This will help us understand how spirituality affects resilience and adaptation during different stages of treatment and recovery for their children. Additionally, we should explore practical ways to incorporate spiritual support into clinical protocols. This involves training healthcare professionals in spiritual competencies and developing guidelines for integrating spiritual practices into daily care. Evaluating the impact of these integrations on care quality, communication between healthcare providers and families, and overall patient experience will be vital in creating a more holistic and patient-centered healthcare approach.

Strengths and limitations

The review included a wide range of studies from different cultural and socioeconomic contexts, providing an extensive overview of the role of spirituality in the care of children with CHD. This breadth allows for a more complete understanding of how spirituality can influence family members’ emotional and psychological well-being in various settings. Additionally, the review identified gaps in the existing literature, such as the lack of structured spiritual counseling models and the need for more studies in developing countries. These insights are valuable for guiding future research and interventions, helping to direct resources and efforts towards areas that could have the most significant impact.

The limitations of the study were: due to the nature of scoping reviews, this study did not assess the quality of included studies, which might affect the depth of conclusions that can be drawn; the focus on published literature might have missed relevant unpublished or non-peer-reviewed studies, limiting the scope of findings. Furthermore, despite the diversity of studies included, certain demographic groups may still be underrepresented, such as fathers (compared to mothers) and families from lower socioeconomic backgrounds or minority religious groups. This underrepresentation can lead to an incomplete view of the experiences and needs of these specific groups, limiting the universal applicability of the findings.

Conclusions

This scoping review has underscored the role of spirituality in the well-being of families of children with CHD. The reviewed studies suggest that spirituality provides mental and emotional support, aid in decision making, and offers benefits when integrated into the healthcare team. However, significant gaps were also identified, such as the need for structured spiritual counseling models and more research in diverse cultural and socioeconomic contexts.

Acknowledgments

Funding: This study was supported by the Amazonas State Research Support Foundation (FAPEAM, POSGRAD 2022/2023_N. 005/2022), through the Stricto Sensu Graduate Support Program (POSGRAD), the Coordination for the Improvement of Higher Education Personnel (CAPES), and the National Council for Scientific and Technological Development (CNPq), through the Postgraduate Program in Health Sciences and the Federal University of Amazonas (UFAM).

Footnote

Reporting Checklist: The authors have completed the PRISMA-ScR reporting checklist. Available at https://tp.amegroups.com/article/view/10.21037/tp-24-134/rc

Peer Review File: Available at https://tp.amegroups.com/article/view/10.21037/tp-24-134/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://tp.amegroups.com/article/view/10.21037/tp-24-134/coif). E.A.J. serves as an unpaid editorial board member of Translational Pediatrics from October 2023 to September 2025. The other authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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