Indefinite loss : parent caregivers' experiences of caring for their adult child in the South African context.

[摘要] While it is recognised that the burden on the caregiver of a person who has suffered aneurological event is great, research into the experience of caregiving and the effects ofcognitive-communicative difficulties on intergenerational families is lacking. Studiesexamining these experiences within a multicultural and multilingual setting such as SouthAfrica are few. The effects of neurogenic communication disorders in family systems alsorequire further investigation. This study explores parent caregivers’ experiences of caring fortheir once-independent adult child, who are now faced with the reality of parenting for thesecond time. A qualitative research design was employed. Eighteen parents of adult childrenwho have suffered TBIs, strokes or brain tumours were interviewed. The data obtained wereanalysed by means of thematic analysis. Themes associated with caring for an adult child,specifically in the South African context, are identified and discussed. These themes relatedto the parent caregiver’s experience of loss – loss of their child due to physical and cognitivecommunicativedifficulties as well as the loss of their own dreams and plans for the future.Multiple roles within intergenerational family systems, support and information are identifiedas significant factors in either minimising or exacerbating their experience of loss. Thesethemes are explained within a Family Systems Theory framework and assist in identifying bothpositive and negative factors that impact on experiences of caring for an adult child. It stressesthe importance of the implementation of sustainable programmes and support servicesspecifically catering for parents of adult children with neurological communication disorders.

[发布机构] University of the Witwatersrand