7.9.3 Carer perceptions (parental and informal) of the health and social care services provided for their dependents: A mixed methodological scoping study (194)
Ian Mansell, Principal Lecturer, School of Care Sciences, University of Glamorgan, Pontypridd, United Kingdom Co authors: Christine Wilson & Becky Stakhouse imansell@glam.ac.uk
Abstract:
The majority of people with learning disabilities live at home with their parents or family carers. This was the case even before policy initiatives moved towards ‘care in the community’ (Valuing People 2001). Encouragingly, people with learning disabilities are living longer and whilst this situation is to be applauded it places additional burden and stress on aging carers. This paper will report carer’s (parental and informal) knowledge of, and satisfaction with, the health and social care services they receive for their learning disabled dependent. Three methods of data collection were used to collect data. Questionnaires, focus group interviews and a hand held electronic voting system. Questionnaires were sent to the total population of members of a Parent and Carer Federation within South Wales (n = 647), with a response rate of 23%; Two focus groups were held exploring the findings from the questionnaire. The electronic voting system ‘Teamworker R’ was used to seek normative data on the consensus between focus group participants. The qualitative findings indicate that Parents and carers reported low levels of help and information in terms of both the quality and quantity of services provided, suggesting that nurses and other professionals sometimes lacked the necessary knowledge of available services and often information had to be ‘prised out’ of these staff. The need to ‘fight and shout’ was perceived as vital in receiving adequate care for their learning disabled dependent, a finding also identified in Northway et. al (2006). The paper will conclude by indicating that nurses, including learning disability nurses, need to ensure they have sufficient knowledge and information regarding services to share with parents and carers. The frustration and anger felt by those who care for the learning disabled was highlighted by this study, along with the often underestimated but very real risk of ‘carer burnout’.
Recommended reading list:
- DOH (2001) Valuing People: A new strategy for learning disability for the 21st. Century. Cm 5086 London, Department of Health
- Northway R, Sardi I, Mansell I, Jenkins R (2006) Hopes and fears concerning service developments, a focus group study of parents and family carers of people with a learning disability, University of Glamorgan
Source of Funding: UK - Research Charity/Foundation
Amount in Funding: 1,000 - 10,000
Biography:
Ian Mansell is a principal lecturer within the Faculty of Health, Sport and Science at the University of Glamorgan. Ian is a registered learning disability and mental health nurse and prior to taking up his post in higher education worked as a community nurse supporting people with a learning disability. His research interests include the subjects of learning disability, health and social care and nurse education. Ian’s recent work has focused on the views of parents and informal carers in supporting their learning disabled offspring. His previous research studies have focused on ‘the abuse of people with learning disabilities’, ‘primary care/ infection control’ and the ‘supervision student nurses’ written work.