Abstract
Background. Adults with intellectual disabilities are starting to live longer, and the percentage of family caregivers who grow old is increasing as well, facing a long-term care. This challenge together with their own-age related health issues and the lack of integrated care provision may have significant repercussions on caregivers, not adequately supported by services that usually provide fragmented care. Nevertheless, many studies have primarily focused on caregivers of children with disabilities. Based on research findings, intervention groups have shown to offer valuable resources and strategies, empowering caregivers, particularly in their later years, to navigate long-term family crises effectively and gain a deeper insight into their own needs.
Objective. Specifically, one of the evidence-based intervention that has shown benefits for caregivers is the Savvy Caregiver Program (SCP), developed with a multidimensional perspective to cope stress, building internal caregivers’ self-confidence and reduce burden. To date, no research has examined the impact of the SPC on older family caregivers of adults with intellectual disabilities. For this reason, this study is aimed at adapting this program to suits the need of older caregivers, specifically those aged over 60 years.
Method. The adaptation of the intervention program has been conducted through a co-creation process based on the eight-phase ADAPT-ITT model, in which the caregivers were actively involved. First, semi-structured interviews for assessing the needs and experiences of the older family caregivers of adults with intellectual disabilities were conducted. The interview included open-ended questions concerning topics such as physical, psychological, social and financial aspects of care, major challenges and needs. Second, perspectives on caregivers needs of professionals supporting adults with intellectual disabilities were collected through a focus group methodology. Third, a pretesting methodology phase was employed to test the original version of the intervention with the new target population (older caregivers), gathering insights into modifications and additional contents.
Results. The active involvement of participants, through the ADAPT-ITT method, has enabled the identification of the practical aspects of caregiving among older individuals. Among those, challenges related to acceptance and obstacles concerning the future, effects on daily life due to limited free time and social support, financial pressures, as well as emotional and physical burdens. Conducting a needs assessment with caregivers and professionals has provided insights into how family caregivers usually navigate through a complex and fragmented care system, often feeling isolated and overwhelmed by their all responsibilities. In addition, the pretesting of the intervention, highlighted the importance of group-based approaches, focusing on the well-being of caregivers and not solely on the individual with a disability.
Conclusion. Consequently, it is crucial to reaffirm the importance of involving the target groups in research to make a meaningful contribution towards understanding their needs and life experiences, considering the contexts and backgrounds. Furthermore, co-creation method supports the development of interventions centred around the family or the individual and enhances the understanding of caregiving phenomena among health professionals. Therefore, the results of this study may serve for an effective implementation of the adapted programme among family caregivers of adults with intellectual disabilities.