As family caregivers provide the bulk of caregiving for adults with intellectual or developmental disabilities, they are naturally concerned about who will ensure that their family members receive appropriate care if they become unable to provide care themselves. Researchers have been studying this issue for decades, with much of the research and program innovation focusing on planning for the future care of adults with intellectual or developmental disabilities as their caregivers age. Our knowledge on older caregivers and future planning is fairly robust in countries that have a large array of services for adults with disabilities, with various evidence-based interventions existing. However, there has been very little research on family caregiving or future planning of older adults with intellectual and developmental disabilities conducted in countries with less developed disability services. The purpose of this study was to explore how family caregivers of adult children with intellectual and developmental disabilities planned for their adult children’s future caregiving needs in Romania, a country with a limited array of disability services.
In this exploratory qualitative study, we conducted 30 face-to-face interviews with caregivers of adults with intellectual or developmental disabilities in the Bucharest metropolitan region. The 30 to 90-minute interviews were conducted in Romanian in a private location and were audio-recorded. We used a semi-structured interview guide, developed based on existing research, with 11 main questions and 15 probing questions to structure the interviews. The sample included 25 mothers and 5 fathers ages 40-86 who cared for adult children age 18-49. We used Braun and Clarke’s (2006) thematic analysis guidelines to analyze the transcribed and translated interview data.
We organized our findings into three categories of themes. The first category, challenges faced by adults with disabilities and their caregivers, had five themes: 1) lack of services, 2) inaccessibility and inclusion, 3) no formal caregiving support, 4) small or no social networks, and 5) overwhelmed and exhausted. The second category, perceptions regarding future planning, had 4 themes: 1) planning is necessary, 2) no help with planning, 3) worries about the future, and 4) avoidance. The third category, engagement with planning, had 3 themes: 1) not planning, 2) engaged, but no plan, and 3) engaged in formal planning. The vast majority of participants were not engaging in any kind of future planning. A common sentiment was, “I don’t want to think of it, that is my plan.”
The findings from this exploratory study can help guide Romanian social workers in working with family caregivers of adults with intellectual or developmental disabilities, particularly around future planning, as most caregivers were highly stressed and engaged in no planning in this limited resource environment. Further, as future planning interventions developed and tested by researchers in well-resourced countries appear ill-suited for contexts where services are less available, social workers need to quickly develop and test alternative models of future planning to assist families in Romania and similar countries with a limited disability service array until more robust services are in place.