1.2.3 ‘Caring not coping’ A mixed methods scoping project of members of a Parent Carer Federation (323)

Ian Mansell, Principal Lecturer, School of Care Sciences, University of Glamorgan, Pontypridd, Wales, United Kingdom Co authors: Christine Wilson & Becky Stakhouse imansell@glam.ac.uk

Abstract:

This paper identifies issues that parents and carers currently view as important to their caring role. There is literature (Mencap, 2002) which suggests that Learning Disability service providers are failing to plan for the needs of people with learning disabilities being cared for by older parents. In a survey of parents, who were over 70, Bowley and McGlaughlin (2006) suggest that, many were either not ready to discuss the future needs of their off spring or were unwilling to make plans. Northway et.al. (2003) found that there were strong fears expressed about what may happen when the parents have passed away. Three methods of data collection were used. Questionnaires, focus group interviews and electronic a hand held voting system.

Questionnaires were sent to the total population of members of a Parent and Carer Federation with South Wales (647), (Response rate 151, 23% return); two focus groups were held exploring findings from the questionnaire. The electronic voting system ‘Teamworker R’ was used to seek normative data on the consensus between focus group participants.

This paper will report the findings of the focus group interviews where the importance of the continuity of key staff such as community nurses and social care workers were raised, as was the assured continuation of existing services. Anxieties regarding what happens to their off spring when the parent and carer has passed on, or can no longer undertake the caring role were also a major theme of the results, as was forward planning which is clearly a key issue to parents. Nurses, including learning disability nurses need to use their full armoury of skills to offer support, advice and guidance to the vulnerable group. The paper will conclude by exploring the strengths and weaknesses of using focus groups with this sample group.

Biography:

Ian Mansell is a Principal Lecture 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 parental and informal carers in caring for 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.