‘Caring for Him Makes Me More Sensitive, like a Kind of Prayer’: Intimate Physical Care for Aging Family Members with Intellectual and Developmental Disabilities in Religious Muslim and Ultra-Orthodox Jewish Societies

1. Introduction

The increasing life expectancy of individuals with intellectual and developmental disabilities (IDD) presents unique challenges, particularly as they experience accelerated aging (Avieli, Band-Winterstein and Zamir 2022; Zamir, and Band-Winterstein 2022). This creates situations where aging parents must care for their aging adult children with IDD, complicating intimate caregiving.

This study explores how aging family members in ultra-Orthodox Jewish and Arab communities in Israel provide intimate care to relatives with IDD. By examining the intersection of aging, disability, religion, and culture, we aim to understand how families find meaning in caregiving within their cultural-religious frameworks.

By comparing these two communities, we highlight shared caregiving experiences, offering insights that transcend religious and political divisions. This research not only informs culturally sensitive support services but also promotes social cohesion. Our team’s diverse backgrounds—Arab and Jewish—ensure a nuanced and comprehensive analysis of both communities.

2. Literature Review

This literature review provides a comprehensive overview of the key concepts and research relevant to our study on intimate physical care for family members with IDD in ultra-Orthodox Jewish and religious Arab communities in Israel. We begin by examining the nature and prevalence of IDD, including current definitions and perspectives. Following this, we explore the challenges of aging with IDD and the increasing burden of intimate physical care on family caregivers. We then delve into the unique aspects of caregiving in ultra-Orthodox Jewish and religious Arab communities, focusing on religious and cultural norms surrounding intimate care.

Finally, we present the theoretical framework of religious phenomenology, which guides our understanding of the meanings attributed to intimate physical care in these faith-based communities. This structure allows us to build a comprehensive theoretical foundation encompassing the multifaceted nature of our research topic, integrating disability studies, gerontology, cultural studies, and religious phenomenology.

2.4. Theoretical framework: Religious phenomenology of intimate physical care for a person with IDD

Phenomenology investigates the personal experiences and meanings that individuals attribute to various phenomena (Van Manen 2016). In the context of intimate physical care for a person with intellectual and developmental disabilities (IDD), phenomenology focuses on understanding the subjective experiences of family caregivers and the religious meanings they attribute to caregiving actions. Family members in traditional-religious societies may view intimate care as a caregiving duty and a religious obligation. Researchers such as William James (1902) and Mircea Eliade (1959) have explored the religious meaning of personal and religious experiences in the context of phenomenology. In his book ‘The Varieties of Religious Experience,’ James dealt with the variety of religious experiences and how they shape the meaning of life for the individual. This study seeks to learn about the religious meaning of intensive physical care with the aging of families. This framework allows for a deep understanding of the personal and religious meanings families attribute to this care, and how they see it as an essential and respected part of their religious lives (Figure 1).

Figure 1

3. Method

The research is based on a qualitative-phenomenological methodology, which is descriptive, inductive, and interpretive. This methodology illuminates the studied phenomenon (Patton 2014).

4. Findings

The research findings reveal a similarity in the experiences of intimate caregiving among the interviewees from the studied communities, reflecting a shared essential perspective that views caregiving as a religious act. Consequently, the findings from both ultra-Orthodox and Arab societies are presented together, characterizing conservative faith-based communities. These experiences are encapsulated in three themes that describe intimate care as a religious commitment:

Theme 1: ‘This is how we preserve the honor of our parents, our family honor. In the most intimate things’: Intimate physical care as preservation of family honor and value

This theme describes how intimate care for a family member with IDD is perceived not merely as a physical task or daily routine, but as a means of strengthening family bonds and emphasizing the value of family. In conservative, faith-based communities, preserving the family and the sense of belonging and mutual responsibility are considered supreme religious values. This theme illustrates how family members experience providing intimate care not just as a duty, but as an opportunity to express love, support, and respect toward family members in need of care. Nechama, an ultra-Orthodox woman and sister to a person with IDD, aged 56, married with 6 children, articulates this sentiment:

I have 6 children… it has been like this for many years, it is… with all the difficulty of the parents and Shlomo (pseudonym), love, real love, the connection with him, but the disability requires care… intensive as they say. It is also an unbelievable challenge. The parents want it… Taking care of him is part of preserving the honor of our parents, our family honor (…) even in the most modest things we do and others do not.

Nechama’s narrative reveals a complex dialectic between religious obligation and familial love, particularly in the context of caregiving. She views the intensive care she provides for her brother as a religious duty, rooted in the commandment from the Ten Commandments: ‘Honor your father and your mother’ (Exodus 20:12). For Nechama, caregiving honors her parents in two, key, ways: first, by fulfilling their wish for the family to care for their son with a disability, and second, by upholding the modesty and dignity of her brother in intimate physical care.

In ultra-Orthodox communities, the concepts of ‘modesty/privacy’ and ‘family honor’ are deeply interconnected. Providing intimate physical care while maintaining modesty is seen as essential to preserving both the dignity of the individual with a disability and the honor of the family. These values are integral to the social and religious fabric of the community, where caregiving is not only a personal duty but also a reflection of the family’s adherence to communal and religious standards.

Thus, Nechama’s experience illustrates how religious commandments, familial love, and communal expectations converge in caregiving, making it both a spiritual and social responsibility.

Walaa, a devout Muslim woman aged 65, a widow with five children, caring for her 43-year-old son with IDD, provides another description dealing with intimate physical care as a family-cultural commitment:

He was always the center of the house, and we would care for him together, taking care of everything, six people around him, all our attention, the heart of the home. I told my children that this is my husband’s will after he passed away, to always be in touch with him, he said that is what he asks, and they listen to him. With that, good siblings, thank Allah…

Walaa describes her son with intellectual and developmental disabilities as the ‘center of the house,’ highlighting his central role in family life and the collective responsibility for his care. She emphasizes that ‘six people in the house around him, all our attention, the heart of the home,’ reflecting the family’s deep commitment to his well-being. This care is both a practical necessity and a moral value, deeply ingrained in the family.

Walaa notes that caring for her son was her late husband’s will, ensuring the family’s connection with him continues. She extends the commandment to ‘honor your father and mother’ by honoring the father’s wishes. She also points to the religious dimension, explaining that her children ‘listen to him’ and are good siblings, ‘thank Allah,’ showing that caregiving is a family duty and a religious obligation grounded in spiritual values.

Netanel, an ultra-Orthodox man aged 34 with children, outlines the connection between the task of intimate physical care for his brother with IDD and the religious obligation to honor father and mother:

It breaks our hearts. I see Dad, a man of honor, doing all the care things for him… so we (the brothers and sisters), will not help? It is not just for Yechiel (family member with IDD, pseudonym), but to help our father? This is the ABC of being a family. It is lifting him to bed, showering him, teeth, also toileting, it is all the time, it is understanding that Dad’s honor is Yechiel’s honor in some way. I also told my brothers, that it is really to understand, that at Dad’s age it is hard and we need to be there… I do not doubt that this is the ultra-Orthodox education of honoring parents.

Netanel describes the family experience as centered on a shared sense of pain, ‘breaking the heart’ of the entire family, reflecting a collective emotional perception. The difficulty is not experienced individually but as part of a shared ‘family heart,’ echoing the ultra-Orthodox value of family unity, where emotional experiences are communal.

The intimate care of a brother with IDD is seen as ‘the ABC of being a family,’ revealing a deep understanding of family identity. Care is not just a task but an essential part of being a family, rooted in mutual help and reflecting the religious and cultural values of the ultra-Orthodox community.

Netanel also connects his father’s honor with his brother’s honor with IDD, expanding the traditional concept of honoring parents. This ‘chain of honor’ links generations and family members, giving the concept more profound religious and family significance. Finally, Netanel highlights the influence of ultra-Orthodox education on shaping his worldview and family values, showing how religious teachings are translated into everyday behaviors and shape family life.

In summary, the first theme emphasizes the deep meaning of honoring father and mother in ultra-Orthodox and Muslim communities in the context of intimate care for family members with IDD. In both communities, care is perceived as a clear expression of the commandment to honor parents, extending beyond its traditional meaning. Honoring father and mother are expressed not only in direct relation to parents, but also in caring for other family members, out of a perception that this is the parents’ will. Thus, this value shapes family relationships and constitutes a central religious and family identity component.

Theme 2: ‘Caring for her intimately, it is the opposite of immodest, I do it because of God’: Intimate care as an act of religious kindness

This theme presents intimate care as an act of kindness (chesed in Judaism, al-rahma in Islam). In Judaism and Islam, kindness is presented as a central attribute of God. Acts of kindness are defined as doing good to others out of pure will and not out of expectation of reward. In Judaism, acts of kindness are considered one of the three pillars the world stands on (Pirkei Avot 1:2).

Our findings indicate that intimate physical care for vulnerable family members is not perceived as an embarrassing physical task, but as an opportunity for a profound expression of performing acts of kindness. For many, the act takes on a spiritual dimension, with caregivers feeling they are fulfilling God’s will in their actions, out of love and compassion for others without compensation.

This is evident from the words of Amna, a devout 62-year-old Muslim woman caring for her 60-year-old sister:

The intimate care for her, it is the opposite of immodest, I do it because of God, because God would want me to care for her like this, I believe in God, and I think I am doing God’s will in this.

Amna emphasizes that her intimate care for her sister has a deep spiritual meaning. She feels it is a way to connect with God and fulfill His will. According to her belief, intimate care does not harm modesty; on the contrary, it is a religious-faithful act. This perspective connects to the idea that every act can serve as sacred work if done with the right intention. This concept manifests in many religious traditions, where acts of help and care for others are defined as approaching the divine will. This also emphasizes that prayer or meditation can serve as paths to spirituality and simple and everyday actions considered ‘impure,’ such as changing diapers and showering an adult family member. In this context, Amna symbolizes the belief that performing these acts of kindness is considered the work of God itself.

Shifra, an impressive 75-year-old widow with nine children, living alone with her 54-year-old daughter who has cerebral palsy accompanied by IDD, similarly describes intimate physical care as an act intensely accompanied by religious commitment:

There is an understanding between us (among family members) that this is a mitzvah and an act of kindness. This is where she was born… caring for her is a mitzvah, it is not always easy or pleasant to do, but that is exactly why it is a challenge… now with changing her diapers, it is tough.

Shifra’s words present a shared family picture based on values of love, kindness, and deep commitment. Shifra emphasizes the importance of keeping her daughter with disabilities at home, in a place that feels part of her and not in an institution. She defines intimate care as a ‘mitzvah’, which in Judaism means an action, act, or way of life determined by God. For her, caring for family members, especially those who cannot care for themselves, is a matter of personal responsibility and an expression of deep spiritual and religious values such as kindness and mercy. It seems that precisely the difficulty and challenge in this mitzvah of acts of kindness, including changing diapers for an adult, add to its value and importance.

Yehuda, 44, married with five children, also describes the intimate physical care of his mother for his 54-year-old brother with IDD in religious terms of kindness:

Mom is a righteous woman… it is not for nothing she received a son like this… maybe they do not praise her enough because it is not customary to talk about with us, maybe a norm not to talk about things that modesty is beautiful to them… but there is a lot of appreciation and respect, and everyone, but everyone appreciates mom very-very-very much. not disgusted, really like an angel. It is faith.

Yehuda expresses deep admiration for his mother’s care for his older brother, who has autism and other disabilities. He describes her as a ‘righteous woman,’ whose caregiving goes beyond practical tasks, reflecting deep religious and spiritual meaning. Despite the family’s great respect for her, cultural norms of modesty limit public recognition. Yehuda notes that while her caregiving is not openly praised, the family holds her in high regard, viewing her actions as both a moral and spiritual act.

Yehuda compares his mother to an angel, emphasizing the purity and spiritual significance of her care, which he sees as a bridge between the mundane and the sacred. He acknowledges the gap between private appreciation and the need for public recognition due to the community’s modesty norms, but stresses that within the family, her care embodies values of self-sacrifice, faith, and love, making it a sacred part of their lives.

Theme 2 explores the concept of intimate care as a religious and moral act of kindness, deeply rooted in the values of Judaism and Islam. In these traditions, caregiving is not viewed as a burdensome or embarrassing task, but as an opportunity to perform acts of compassion and love, aligning with God’s will. The physical care of vulnerable family members is seen as a spiritual practice, elevating everyday tasks to acts of devotion.

Caregivers perceive their role as an extension of religious principles, with kindness (chesed in Judaism, al-rahma in Islam) being central to their faith. Even challenging aspects of caregiving are regarded as fulfilling deep religious values such as mercy, self-sacrifice, and commitment. This care transcends practical necessity, becoming a sacred duty that honors both the caregiver’s faith and the dignity of the person being cared for. The theme highlights that while cultural norms of modesty may limit public recognition, these acts are deeply valued within the family as expressions of faith and dedication.

Theme 3: ‘You can despair, and it will not help you. But you can see it as a true test of faith’: Intimate care as a means for self-improvement

The research findings highlight intimate care as a form of ‘character refinement,’ a process of self-improvement and cultivating good qualities through spiritual practice, central to Islam and Judaism. This process provides an opportunity for personal growth as a believer. According to the interviewees, intimate physical care deepens human connections, fostering love, patience, and compassion. The challenges involved in caregiving lead to emotional and spiritual development, and the focus on mutual growth between caregiver and care recipient is a critical aspect of this theme.

Dorit, an ultra-Orthodox woman aged 70 caring for her 43-year-old son, poignantly describes intimate physical care as a tool for spiritual growth:

The last time I was at the doctor’s was last September… need to change diapers [after a stroke of the son with IDD]. So, I ask her, doctor, what will be now? Because it is also a kind of… So she said to me, ‘Do you believe in God?’ I told her, ‘I know it is from Him’ so it is work to care for him properly. And contentment. So I tell myself this every day it is… Caring for him is to make me more sensitive. a kind of prayer.

At the crisis point that Dorit experienced after her son’s stroke, she is dealing with a new reality where she is required to care for him differently, including dealing with diaper changes. This reality, which might have felt like a burdensome yoke, becomes a journey of character refinement in Dorit’s eyes, a process of emotional and mental purification leading to spiritual and personal growth. The doctor’s question, ‘Do you believe in God?’, and Dorit’s response, ‘I know it is from Him’, point to a profound recognition on her part that this problematic reality is not accidental, but part of a larger plan, that caring for her son is not just a physical task but also sacred work requiring her to purify her soul and elevate spiritually.

The statement that intimate physical care for her son is ‘a kind of prayer’ emphasizes the similarity between intimate care and prayer. The daily care activities, such as changing diapers, bathing, and feeding, become ritualistic. Diaper changing is perceived as part of a spiritual ritual that strengthens the connection with the divine and aids character refinement. Giving this meaning to the Sisyphean nature of physical care allows it to be turned into a spiritual ritual, where every action serves as an opportunity for developing patience, unconditional love, recognition of human dignity, and compassion.

Yasmin, a devout 57-year-old Muslim woman, married without children, who cares for her 40-year-old brother with IDD, describes the caregiving task as spiritual self-work in a similar yet different way:

I come here to care for him two nights… I have totality for the people close to me… totality.. My role is to expand the circle of containment and acceptance of the other and the different, [when you care] you need to be broader than the place you are in.

Yasmin sees her total devotion to caring for her brother as a calling. The concept of ‘totality’ appears twice, not just as an act of giving, but also as an expression of a religious worldview, where the self is devoted and merges with the other in a way that leaves no room for division or separation. The statement ‘when you care you need to be broader than the place you are in’ points to the mental and spiritual expansion required of a caregiver through devotion to caring for the family member with a disability. The caregiver must go beyond the physical and perceptual boundaries of the space in which they are, rise above routine and objectivity, and enter a space where containment and acceptance of the other are the leading values. This is a call to deal with the challenge of seeing the similarity in the other, to love and accept them even when it requires tremendous emotional and physical effort. Yasmin’s words seem to describe intimate care as an experience of expansion and spiritual growth.

Limor’s words, aged 68, caring for her 63-year-old brother, provide another perspective on intimate physical care as Sisyphean spiritual work:

Look, it is family, grandchildren, children, we all learn tolerance and a different pace. Because for example, you can talk a lot about patience, but caring is not the same thing, it is two different things. We do it. So this is character refinement! What strengthens me most is that it is… Look, when there is a crisis, when my husband fell ill, for example, it was a massive crisis… You need to care for the body with patience…. We care for everyone (aging mother, sick husband, and brother with IDD). You can despair, and it won’t help you. However, you can see it as a true test of faith.

Limor’s perspective reveals intimate care as a powerful tool for religious development and personal growth. She draws a distinction between theoretical discussions about patience and the actual practice of it through caregiving. In her view, patience is not something learned through study alone but through the daily challenges of providing intimate care. This hands-on experience becomes a method of character refinement, where the act of caring fosters virtues like empathy, compassion, and resilience.

In contrast to the ultra-Orthodox ‘study group,’ which focuses on Torah study as the primary means of self-improvement, Limor advocates for practical action as the true path to refining one’s character. While religious study may offer a foundation, she believes that real personal development comes from the direct experience of caring for others, particularly in the intimate and demanding tasks involved in supporting her brother, aging mother, and sick husband.

Limor also frames this care as a test of faith, akin to the concept of ‘ibtilaa ‘(ابتلاء) in Islam and Judaism, where life’s trials serve as opportunities to strengthen one’s faith. Unlike the one-time, monumental test faced by Abraham in the biblical story, Limor’s test of faith is ongoing, woven into the fabric of her everyday life. The daily challenges of caring for multiple family members create a constant trial, pushing her to make compassionate choices repeatedly rather than just once.

For Limor, this test of faith is not a grand sacrifice but a continuous act of love and dedication. It highlights the deeper religious meaning found in ordinary actions, suggesting that spiritual growth can be achieved not only through study but also through the consistent, compassionate care of others in everyday life. This perspective challenges the traditional notion that religious refinement is confined to study, proposing that it is equally, if not more, present in the quiet, daily acts of caregiving. In summary, the third theme emphasizes intimate care as a process of ‘tikkun hamidot’ (character refinement) and spiritual growth. Caregivers view their roles as physical tasks and spiritual journeys that allow them to develop empathy, patience, and a deeper connection to their faith and family values. This perspective transforms the challenges of caregiving into opportunities for personal and spiritual development (Table 2).

5. Discussion

This article presents a phenomenological and theological analysis of intimate physical care in aging families in ultra-Orthodox and Arab societies. Through an investigation of three central themes that constitute the religious-theological explanation for intimate physical care—a. honoring father and mother, b. care as acts of kindness, and c. care as a path to self-improvement and spiritual growth—the article reveals the religious and value depth of caregivers’ subjective experiences.

In his classic book ‘The Varieties of Religious Experience’ by William James (1902) explores the idea that religious experience is a profound psychological phenomenon affecting a person at different levels. James emphasizes that religious experience is not just a matter of beliefs and doctrines but also includes the experiential and most intimate dimension of human life. This article focuses on a unique and profound expression of religious experience—intimate physical care in aging families in ultra-Orthodox and Arab societies. This is a fascinating meeting point between the spiritual and the physical, faith and action, and private and collective.

The first theme, ‘Intimate Physical Care as Preservation of Family Honor and Value,’ reflects the deep-rooted cultural and religious values in both ultra-Orthodox Jewish and Arab Muslim communities. The concept of honoring parents, a fundamental principle in both traditions, is expanded to include care for siblings or children with IDD. This expansion demonstrates how religious values adapt to meet the challenges of modern life, including long-term care for aging family members with disabilities.

The second theme, ‘Intimate Care as an Act of Religious Kindness,’ explores how caregivers reframe potentially embarrassing or difficult tasks as expressions of religious devotion. This reframing serves several key purposes. First, it provides meaning and purpose to the caregiving role, transforming what might otherwise be seen as burdensome into an opportunity for spiritual growth. Second, it aligns caregiving with religious values and expectations, allowing caregivers to view their actions as fulfilling a divine purpose. Finally, it helps caregivers maintain a sense of dignity and respect, both for themselves and for the care recipient, by elevating their work as an act of kindness rooted in faith.

The third theme, ‘Intimate Care as a Means for Self-Improvement,’ reveals how caregivers view their roles as opportunities for spiritual growth and character refinement. This perspective transforms the challenges of caregiving into a form of spiritual practice, aligning with religious concepts of self-improvement and drawing closer to the divine through everyday actions.

These findings align with recent research on the intersection of religion, disability, and caregiving. For example, Albertini and Mantovani (2022) found that religious beliefs significantly influence filial support obligations among immigrant populations in Italy. Our study extends this understanding to the context of disability care in religiously conservative communities.

Moreover, our findings resonate with Chen’s (2006) work on how evangelical Christianity reconstructs Taiwanese immigrant families in the United States. Similarly, we see how religious beliefs and practices in ultra-Orthodox Jewish and Arab Muslim communities shape and give meaning to family caregiving experiences.

The study also contributes to the growing literature on intersectionality in aging and disability studies (Collins 2019). By examining the interplay of age, disability, religion, and culture, we provide a more nuanced understanding of the caregiving experience in these communities.

The findings point to the need for a holistic approach to supporting these families. This approach recognizes the deep spiritual-religious dimension of the care experience. It provides support not only on the physical and emotional level but also on the spiritual and theological level. Professionals working with these populations need to be aware of the religious and cultural complexity of the experience and provide support tailored to the unique needs of both caregivers and care recipients.

Therefore, we recommend establishing therapeutic groups intended for siblings and parents of a person with IDD who provide them with intimate care. The research findings indicate that the dilemmas and difficulties of these families are similar. Therefore, creating separate care and support groups that will deal with the unique difficulties is appropriate. Meeting with family members will allow legitimization of difficult feelings, mutual assistance, and discourse with the ‘identical identity group.’

There is also great importance in adapting the type of therapeutic intervention to the needs of the ultra-Orthodox/Muslim family providing intimate care to the family member with IDD. The research findings indicate that the question of the meaning of intimate care for a family member with IDD is very clear to them and stems from religious belief. Hence, therapeutic interventions should focus on finding practical solutions for everyday life and providing a response to focused emotional distress.

The current research has several possible limitations. The first is that the researchers encountered great difficulty recruiting families. Many approaches were answered negatively due to families’ fear of participating in research on a topic with a high social taboo. The tone rich in religious meaning in the families’ words may reflect the opinions of the families who agreed to be interviewed.

Consequently, due to the sample size, deepening and understanding processes in the different streams characterizing ultra-Orthodox versus Muslim society was impossible. Despite the remarkable similarity, some differences were not expressed.

In addition, the critical approach calls for conducting research in collaboration with people with disabilities in the spirit of the call ‘Nothing About Us Without Us’ (Charlton 1998). Due to the nature of the disability, this research was not done in collaboration with people with IDD, this fact should be considered when reading this research.

Future research could expand on this study by including a larger sample size, allowing for more nuanced comparisons between different religious streams within ultra-Orthodox Jewish and Muslim communities. Additionally, developing methodologies that allow for greater inclusion of individuals with IDD in the research process could provide valuable insights and perspectives currently missing from the literature.

6. Conclusion

This study provides unique insight into the lived experiences of aging family caregivers who provide intimate physical care to relatives with IDD in ultra-Orthodox Jewish and Arab communities in Israel. Illuminating the religious and cultural meanings attached to caregiving contributes to a more nuanced understanding of how faith-based communities navigate the challenges of disability care. The findings underscore the need for culturally sensitive support services that recognize and respect the spiritual dimensions of caregiving in these communities.

Moreover, this research opens up new avenues for dialog and mutual understanding by revealing unexpected commonalities between these often-divided communities. It demonstrates how shared human experiences, such as caregiving for vulnerable family members, can transcend political and religious boundaries, offering a potential bridge for greater social cohesion.

As societies globally grapple with aging populations and increasing rates of disability, understanding the diverse ways in which different communities approach caregiving becomes ever more crucial. This study not only contributes to academic knowledge in disability studies, gerontology, and religious studies but also offers practical insights for policymakers and healthcare professionals working with diverse populations.

Ethics and Consent

This study received ethical approval from the Faculty Ethics Committee at the University of Haifa on December 3, 2022 (Approval No. 506/22). The research complies with the ethical standards set by the committee, ensuring that all procedures adhered to legal and scientific ethical guidelines. Participants provided informed consent and were assured of their anonymity and the voluntary nature of their participation.

Competing Interests

The authors have no competing interests to declare.