Caring for children with learning disabilities: an exploratory study of parental strain and coping

Abstract

Accessible summary • Caring for a child with learning disability can be both a rewarding and difficult experience, but little is known about the experience of parents who provide care for children with learning disabilities in Ireland. • This study involved 32 parents of children (<16) with learning disabilities living in the Greater Dublin area. • The research investigated the kind of tasks involved in caring for a child with a learning disability, the extent and nature of any difficult behaviours with which parents must cope as well as parents’ attitudes towards caring. The use and availability of support services and how parents cope with their caring role were also explored. • This research is important to people with learning disabilities and their carers because it tells us about the practical, emotional and psychological benefits and drawbacks of caring for a child with learning disability and the importance of having appropriate and effective support services for both parents and their children. Summary Despite recurring concerns about the role and appropriate support of informal carers, little is known about the parental experience of caring for children with learning disabilities in Ireland. This study describes and analyses the nature and consequences of care and coping among parents of children (<16) with learning disabilities living in the Greater Dublin area. Participants (n = 32) completed the Caregiver Strain Questionnaire and an adapted version of the Carers Questionnaire which assessed: care tasks/behavioural difficulties; caregiver attitudes; service provision; and coping strategies. Qualitative analysis examined factors affecting carers’ ability to cope. Participants showed high levels of objective and subjective caregiver strain and most were receiving inadequate support. However, parents employed a range of strategies to help them cope more effectively. The qualitative data highlighted the difficulties and rewards of caregiving and the inadequacies of current service provision.