This work was supported by a grant from Shalem Fund
Increased life expectancy in the general population, coupled with medical and ideological changes, has led to longer and fuller lives for people with intellectual disability (ID) in mainstream society. Nowadays, more individuals with ID live and age within their family
The scholarly literature has traditionally addressed the study of the aging family, life course and disability as separate fields of inquiry. Furthermore, in general, research failed to capture the dimension of time and its dynamic implications on the family fabric and relations. Therefore, it is not surprising that nowadays scholars, professionals and disability rights activists call for exploring the interplay between aging and family in a more integrative perception that attempts to capture the ways in which disability relate to the family roles and dynamics over time. In accordance to this novel call, the present study aim was to describe and analyze the different perspectives of family members in regards to their experiences of living with and alongside an adult child with ID
The study employed qualitative methods using the family as the unit of analysis. 10 aging family units were interviewed, with each unit comprised of three members: aging parent (age ranged between 61 to 89), an adult sibling (23 to 65 years old), and an adult child with ID (age ranged between 25 to 62). Families were recruited through health and social service, and community agencies. In addition, snowball techniques were also employed
Data was collected through face-to-face, semi-structured interviews held separately with each participant. The interviews were conducted using an interview guide designed specifically for each family member. This guide included the following content areas: the family and its relationships along the life course; life experience of having a family member with ID; aging of the family with a person with ID; a retrospective and prospective view
Analysis was conducted in two levels: the individual level (for each participant), and the holistic familial level. In accordance, findings are presented and discussed on these two parallel levels: first themes emerge of the analysis of the family as a whole, followed by an analysis of the perspective and experiences of the nondisabled siblings
The first level has yielded three major themes: disability as managing family life or the family manages the disability across the lifespan and aging; transition to old age- coping strategies between continuity and change; unwanted gift or labor of love – retrospective gaze of family members on living and aging in a family with ID
The second level of analysis focuses on the unique perspective of siblings of the person with ID. The analysis revealed the following three themes: “am I a mother? , a sister?, a friend? a daughter?” multiple roles of siblings across the life course; “Ella moves aside now” – the sibling as the responsible adult in the aging family; “My mom is the only one knows how to handle him” – what does the future holds for the siblings
The study findings are discussed within the theoretical frameworks of the life course perspective and intergenerational theories. The analysis of the family perspective revealed that the storyline of the family is constructed over time around two transitional milestones. The first is the birth of the child with the ID and the second is the aging as a new arena for family coping. In these times, the family dynamic roles and fabric are renegotiated. The retrospective view reveals the complex and varied picture in which the commitment to care for the individual with ID relates to the identity of the person as ”internal child” and the parents as dealing with internal parenthood. This situation has vast implications on the interfamilial, generational and intergenerational relationships. Moreover, it seems that with the transition to old age, caring issues and roles are becoming more prominent. Family members are faced with more caring demands animating from deterioration in functional ability and health, which may result in increased burden of care. Finally, in this stage of family life, all members are involved in life review and meaning making processes, for the family as a whole and for each individual separately
The findings illuminate the need to address the family, not only as support and care resources for the person with disability, rather there is a need to acknowledge the family as an integral and holistic entity with unique and changing needs. In order to promote the rights of all its members across their life course, it is crucial to develop and maintain an all-inclusive and sensitive service system across the lifespan. The service system should address the ever-changing family needs in the present and future. Designing and implementing interventions addressing aspects of care such as finance familial role transition, responsibilities and intergenerational commitment, and to assist in providing ongoing and sensitive support to all family members across their life course
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