title: 'It terrifies me, the thought of the future': listening to the current concerns of informal carers of people with a learning disability.
abstract: The aim of this article is to report findings from a study that asked carers for their views on a wide range of topics. Issues relevant to the current concerns of carers are reported here. A mixed method triangulated design yielded both quantitative and qualitative data. A total of 647 members of a parent/carer federation were sent a questionnaire with a section on 'current concerns'. The response rate was 23 percent (151 participants). Two focus groups were held with 15 carers who had completed the questionnaire. Issues of concern to carers included access to health and social care information and services; quality and quantity of respite care; suitable educational provision; independence and quality of life (for a person with learning disability); and what would happen to the person with learning disability when the carer was no longer able to carry out their caring role.
authors.affiliation: University of Glamorgan, UK. imansell@glam.ac.uk
authors.forename: Ian
authors.initials: I
authors.lastname: Mansell
authors.forename: Christine
authors.initials: C
authors.lastname: Wilson
mesh_terms: D000203:Activities of Daily Living / Q000145:classification; D000293:Adolescent; D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D003258:Consumer Behavior; D003255:Consumer Organizations; D017281:Cost of Illness; D004495:Education of Persons with Intellectual Disabilities; D005239:Fear; D005260:Female; D006297:Health Services Accessibility; D006301:Health Services Needs and Demand; D006304:Health Status; D006801:Humans; D008607:Intellectual Disability / Q000523:psychology* / Q000534:rehabilitation*; D007360:Intelligence; D008297:Male; D008875:Middle Aged; D011788:Quality of Life / Q000523:psychology; D012144:Respite Care; D012947:Social Work; D011795:Surveys and Questionnaires; D055815:Young Adult