A survey exploring the educational needs of care practitioners in learning disability (LD) settings in relation to death, dying and people with learning disabilities

Abstract

This paper presents the findings of a small scale pilot study which explored the educational base and needs of qualified care practitioners in Learning Disability (LD) settings in relation to death, dying and people with learning disabilities. Eighty questionnaires were sent to two NHS Trusts in the South of England. The response rate for the qualified care practitioners from Cherry Blossom (CB) was 100%, whereas for Greengages (GG), the response rate was only 25%. The response from the unqualified care practitioners was disappointingly low, hence we declared them null and void. The analysis of data highlighted major concerns: namely, a lack of consistent policy in the recording of death in residential homes for dying persons with LD; a lack of knowledge, particularly in psychosocial aspects and skills in care of dying persons. The majority of the qualified care practitioners surveyed highlighted the importance of communication with clients and their families. We recommend that communication and interpersonal skills in the care and management of the terminally ill persons with LD be the core component in the nursing curriculum which at present only indicates a trace of it. It is not made explicit that it is essential. This study supports the notion that issues of LD override and obscure physical illness. Our study also highlights ambiguity in the use of concepts and terminology, and demonstrates some limitations in our methodology. We propose that further research, using different methodological approaches, such as Ethnography, Ethnomethodology, or a combination of these, would be appropriate.