Experiences of Family Carers of Adults with Intellectual Disabilities: Demands, Stressors and Satisfactions

Abstract Most adults with intellectual disabilities are cared for across their life-spans by their families. The purpose of this thesis was to address four issues relevant to family care-giving practices: contributions of fathers, in contrast to those of mothers, to the care of their adult daughter or son with intellectual disabilities; the relationship between care-giving and other life role demands encountered by mothers and fathers of adults with intellectual disabilities; (given that female relatives undertake the majority of care-giving responsibilities), the impact of care-giving stressors and demands on mother and sister carers’ well-being and the resources used for management; and how the impact of care-giving demands, stressors and satisfactions on female carers’ well-being changes over time. These issues were investigated in a series of three studies. Study One examined how mother and father carers of adults with intellectual disabilities coped with care-giving and other life roles. Study Two investigated the impact of the demands, stressors and resources, such as coping and care-giving satisfaction, upon female carers’ well-being. In Study Three, the processes by which these variables changed over time were evaluated using a short-term longitudinal investigation. Findings from the first study indicated that an extremely high proportion of both mothers and fathers were in the clinical range for Social Dysfunction, Anxiety/Insomnia, and Somatic complaints, although levels of Severe Depression were relatively low. In this study, mothers undertook more daily care-giving tasks than fathers, but the range of tasks was similar. Mothers also reported significantly more care-giving difficulties and satisfaction than fathers. With respect to Study Two, almost all of the female carers interviewed were in the clinical range on the measure of psychological functioning. Demands contributed significantly to poorer functioning. The women in this study appeared to under-report the level of difficulties they experienced. In Study Three, direct relationships were found between care-giving difficulties and satisfaction, as well as evidence that for some individuals there was development of competence in meeting the demands of care-giving as carers aged whereas for others, the demands of care-giving depleted their resources. Several conclusions can be drawn from this research: First, that mothers and fathers of adults with intellectual disabilities experience care-giving demands, stressors and satisfactions differently; secondly, that the high level of demands and stressors faced by many female carers, which adversely impact upon their psychological well-being, suggests that their role as caregivers does not appear to be sustainable under their current circumstances; and thirdly, that crosssectional studies may provide an incomplete picture and may overlook the cumulative impact of stressors, as well as the role of satisfactions and resources, upon care-givers’ well-bein