Tolerating Uncertainty: Experiences of Caregiving and Perceptions of the Future for Adults with Intellectual Disabilities and Older Parent-Carers

Thesis abstract
Increased life expectancy for people with intellectual disabilities (ID) has meant that more adults with ID are living with ageing parent-carers. Incapacity or death of the parent can lead to crisis-care management, compounding the trauma of loss for the person with ID. Existing literature has tended to focus on experiences of younger families and is limited in relation to older families with ID. The aim of this thesis was firstly, to review the literature regarding the psychological impact of life-long parental caregiving and secondly, to develop a grounded theory of the experiences and perceptions of the future for older families with ID. A literature review regarding the psychological impact of life-long caregiving included 14 studies being identified and critically reviewed. Findings revealed that parents experience satisfaction as well as stress in their caregiving roles. Despite profound fears and anxieties regarding the future care of their son/daughter, the review highlighted that most parents do not make future plans. However, there is still scope for further research investigating the perceptions of the future and barriers to planning for older families with ID. A grounded theory was co-constructed with nine older parents and three individuals with ID. ‘Tolerating uncertainty’ was found to be the core process in participants’ attempts to manage anxieties about the future. This research study provides a unique contribution to knowledge because it includes the perspective of both the older-parent and the person with ID, often an omission in the literature. It further adds to the growing evidence base of exploring the needs of older families with ID in order for interventions to be tailored accordingly. In the final chapter the process and findings of both the literature review and research study are reflected upon. The reflexivity of the researcher is also examined. The personal experience of conducting the research was both challenging and rewarding. It is important that the voices of these often marginalised groups are heard so that services can support these families in planning for the future and thus avoiding crisis-care management and increased trauma for the person with ID when their parent is no longer able to care.
Word count of thesis: 19,214