Ulster University Logo

Service user perspectives on palliativecare education for health and socialcare professionals supporting people with learning disabilities

Barr, Owen, McIlfatrick, Sonja, McConkey, Roy and McLaughlin, Dorry (2014) Service user perspectives on palliativecare education for health and socialcare professionals supporting people with learning disabilities. BMJ Supportive & Palliative Care, online . [Journal article]

Full text not available from this repository.

URL: http://spcare.bmj.com/content/early/2014/03/04/bmjspcare-2013-000615.abstract

DOI: 10.1136/bmjspcare-2013-000615

Abstract

Background and objectives Evidence fromEuropean and American studies indicates limitedreferrals of people with learning (intellectual)disabilities to palliative care services. Althoughprofessionals’ perceptions of their training needs inthis area have been studied, the perceptions ofpeople with learning disabilities and family carersare not known. This study aimed to elicit the viewsof people with learning disabilities, and their familycarers concerning palliative care, to informhealthcare professional education and training.Methods A qualitative, exploratory design wasused. A total of 17 people with learning disabilitieswere recruited to two focus groups which tookplace within an advocacy network. Additionally,three family carers of someone with a learningdisability, requiring palliative care, and two familycarers who had been bereaved recently were alsointerviewed.Results Combined data identified the perceivedlearning needs for healthcare professionals.Three subthemes emerged: ‘information andpreparation’, ‘provision of care’ and ‘family-centredcare’.Conclusions This study shows that people withlearning disabilities can have conversations aboutdeath and dying, and their preferred end-of-lifecare, but require information that they canunderstand. They also need to have people aroundfamiliar to them and with them. Healthcareprofessionals require skills and knowledge toeffectively provide palliative care for people withlearning disabilities and should also work inpartnership with their family carers who haveexpertise from their long-term caring role. Thesefindings have implications for educators andclinicians.

Item Type:Journal article
Faculties and Schools:Faculty of Life and Health Sciences > School of Nursing
Faculty of Life and Health Sciences
Research Institutes and Groups:Institute of Nursing and Health Research
Institute of Nursing and Health Research > Managing Chronic Illness Research Centre
Institute of Nursing and Health Research > Centre for Intellectual and Developmental Disabilities
ID Code:28843
Deposited By: Professor Sonja McIlfatrick
Deposited On:12 Mar 2014 11:22
Last Modified:12 Mar 2014 11:22

Repository Staff Only: item control page