Family Caregiver Adaptation during the Transition to Adulthood of Individuals with Intellectual Disabilities: A Scoping Review

Abstract

During the transition to adulthood, individuals diagnosed with intellectual disability (ID) and their family caregivers have unique experiences. This scoping review studies the sources of the family caregiver's objective burden, support, coping mechanisms, positive caregiving, and quality of life to understand the caregiver's adaptation process when the individual with ID transits to adulthood, according to Joanna Briggs Institute (JBI) Scoping Review methodology guidelines. The inclusion criteria included studies of family caregivers of any age who provide unpaid care and live with individuals diagnosed with ID who are transitioning to adulthood. Of 2875 articles identified, 12 published studies were included. The main themes included caregivers reporting dissatisfaction with the available adult services and exhaustion from being a caregiver. Overall, a vicious cycle of likely increased demands during the transition, with caregivers not being prepared to cope with these demands while concurrently being dissatisfied with the adult services system, leads the caregivers to develop a pervasive sense of helplessness. Future studies would benefit from recruiting caregivers from sources other than adult-only service centres and using qualitative (to identify the broad aspects of the key factors) and quantitative (to identify the significant differences between the key factors) methodologies.

Keywords: family adaptation; family caregiver; intellectual disability; neurodevelopmental disorder; positive aspects of caregiving; quality of life; transition to adulthood.

Figure 1

Outline of screening process according to PRISMA 2020 flow chart. Adapted from PRISMA 2020 flow chart.