Literature DB >> 20558434

An exploration of the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities.

Karen Ryan1, John McEvoy, Suzanne Guerin, Philip Dodd.   

Abstract

Research suggests that shortcomings exist in the provision of palliative care to people with intellectual disabilities. This mixed-methods study aimed to describe the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities. The sample was drawn from the population of one Health Service Executive area in Ireland. Staff from intellectual disability and palliative care services completed surveys and participated in focus group discussions. Three hundred and eighty-nine questionnaires were distributed and 16 focus groups were held. Fifty-nine per cent of palliative care staff and 67% of intellectual disability services staff had cared for someone with intellectual disability who had died but level of experience was low. Both palliative care and intellectual disability services staff lacked confidence in their ability to provide palliative care. Staff were challenged by perceived 'differences' and 'difficulties' in the provision of care. They endorsed a partnership approach to care but focus group discussions revealed that a shared desire to cooperate was insufficient to guarantee effective collaboration.

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Year:  2010        PMID: 20558434     DOI: 10.1177/0269216310371413

Source DB:  PubMed          Journal:  Palliat Med        ISSN: 0269-2163            Impact factor:   4.762


  3 in total

1.  'From activating towards caring': shifts in care approaches at the end of life of people with intellectual disabilities; a qualitative study of the perspectives of relatives, care-staff and physicians.

Authors:  Nienke Bekkema; Anke J E de Veer; Cees M P M Hertogh; Anneke L Francke
Journal:  BMC Palliat Care       Date:  2015-07-25       Impact factor: 3.234

2.  Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique.

Authors:  I Tuffrey-Wijne; M Wicki; P Heslop; M McCarron; S Todd; D Oliver; A de Veer; G Ahlström; S Schäper; G Hynes; J O'Farrell; J Adler; F Riese; L Curfs
Journal:  BMC Palliat Care       Date:  2016-03-24       Impact factor: 3.234

3.  Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care.

Authors:  Irene Tuffrey-Wijne; Dorry McLaughlin; Leopold Curfs; Anne Dusart; Catherine Hoenger; Linda McEnhill; Sue Read; Karen Ryan; Daniel Satgé; Benjamin Straßer; Britt-Evy Westergård; David Oliver
Journal:  Palliat Med       Date:  2015-09-07       Impact factor: 4.762

  3 in total

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