Background: Many persons with intellectual disability (ID) continue to live in the family home in their adulthood. Yet, caregiving becomes more difficult as family carers grow older.
Aims: To explore how the adult persons with ID and challenging behaviour (CB) have influenced the lives of aging carers, and what aging carers do to accept the reality to provide care to their family members.
Methods: Data were drawn from in-depth interviews with 18 older carers who were caring for adult children with ID and CB at home. Data were analysed using thematic content analysis.
Results: Aging carers of family members with ID have described difficult and negative caregiving situations that have affected their personal and family life in the whole lifetime. Over the years of managing the CB presented by their adult children with ID, the helpless and stressful experiences have led to feelings of loss of control and trapped over the longstanding caregiving situation that seemed to have dominated most of their own life. Indeed, the significant personal sacrifices that have been made have helped them to learn to hold a fatalistic life view, control their own emotions and remain patient so that they can continue in the caregiving journey to take care of their children with ID at home.
Conclusions: Caregiving for people with ID and CB can cause substantial burden for the family. Understanding and knowing how carers offload caregiving demands can provide evidence to suggest what will work and can help the family unit.
Alice N. L. Kwong, Caritas Institute of Higher Education, Hong Kong
Lisa P. L. Low, Caritas Institute of Higher Education, Hong Kong
Angela H.Y Cheng, Caritas Institute of Higher Education, Hong Kong
Phyllis K.S. Wong, Chinese University of Hong Kong, Hong Kong
Mimi M.H. Tiu, St. Teresa’s Hospital, Hong Kong
Crystal W.Y. Kan, Caritas Institute of Higher Education, Hong Kong