“You love your children but its hard work”: parents’ experiences of children’s learning disability services

Aims - This study aimed to explore parents’ experiences and opinions of accessing current services for children with learning disabilities, including direct payments. \ud \ud Background – Current government policy and legislation emphasises that children with disabilities are a priority area. In particular policy indicates a need to empower parent’s choice and control over the services they receive by promoting the use of direct payments and short breaks. Despite this very little is known about parents’ experiences and opinions of these services. \ud \ud Method – A qualitative study which has taken a phenomenological approach was used to elicit parents lived experiences of services. A purposive sampling method was used to select 9 participants to take part in semi-structured interviews. The data from these interviews was then manually interpreted using thematic analysis and discussed in relation to policy and literature.\ud \ud Findings – The thematic analysis drew out seven key themes that relate to significant experiences or events in caring for a child with learning disabilities these are; The psychosocial impact of caring, access to services, types of breaks, direct payments, transition, parent-social worker relationship and parents and policy, each of which have associated sub-themes. \ud Conclusion - The findings confirm that the parents’ experiences are variable although a positive experience is often dependent on the level of information, support and collaboration with social workers and other health professionals. Given the limited previous research which has covered this area, this study has provided a base to indicate future research that would enable a deeper understanding of parents and professional experiences of services and as a result can be used to guide and inform effective commissioning of future children’s learning disability services