Elderly family carers’ perceptions of managing challenging behaviour of their adult children with intellectual disability at home

Abstract

Background: Challenging behaviour in the family with intellectual disability (ID) does not appear to be new, yet there is no concrete evidence to suggest what will work and can help the family. It can be sensitive and distressing to talk about, and hesitancy in revealing feelings about their own adult family member with ID, especially for elderly family carers.

Aims: (1) To describe attitudes of aging parents towards the CB presented by their adult family children with ID; and (2) to explore how adults with ID and CB have influenced family relationships and the lives of elderly family carers.

Methods: A qualitative interview study was conducted and used purposive sampling to recruit nine elderly family carers of adults with ID and CB living at home. Thematic analysis was used.

Results: Adults with ID had some influences on the harmony, balance and connections in the family, and occasional clashes were described. Most participants perceived aggressive behaviour as CB, followed by destructive, harassing, and/or self-harming behaviour. Depending on the severity of the CB, participants reported worries, distress and/or annoyance. While there was a good relationship with person with ID, participants were bounded by parenting responsibilities, and revealed mixed views of ‘self-blaming’, feelings of having ‘no choice’, and whether to accept or not accept the CB.

Conclusion: Continuous care to tackle CB of their children has placed heavy toils on elderly parents. Concerns about who will take onus for providing care has highlighted the need for early future care planning and community support.