Older parents of people who have a learning disability: perceptions of future accommodation needs

Accessible summary This study looked at where parents think people who have a learning disability may live when parents are not able to give support at home. The study showed that parents were not satisfied with services and that they worry about the future and getting older. Parents feel that supporting a son or daughter who has a learning disability is a difficult job but they want to give support for as long as possible. Parents are worried about what the brothers and sisters of people with a learning disability may have to do in the future. This study is important to people who have a learning disability because parents will not always be here to help. Summary The aim of this qualitative study was to provide an insight into the perceptions of older parents of learning disabled people on the future accommodation needs of their adult children. Semi‐structured interviews were used to seek parental awareness of residential options available, concerns in relation to future accommodation and the preferred accommodation options for their offspring. Four couples who shared the family home with an adult who has a learning disability took part in the study and data were analysed using a step‐by‐step form of content analysis as described by Burnard [Nurse Educ Today11 (1991) 461]. Emergent themes from transcripts were then organized into main categories. The results of this study suggest that older parents are dissatisfied with both statutory and private services, that they have concerns for their nondisabled children and their own ageing. Being a parent to a person who has a learning disability is seen to be a difficult task and yet parents may want to provide support at home for as long a possible. Of the parents who participated in this study, three couples wanted to maintain their adult child at home for as long as possible and the parents who were actively seeking accommodation outside the family home expected to be involved in all aspects of their daughter's care for the long‐term future.