'If and when?': the beliefs and experiences of community living staff in supporting older people with intellectual disability to know about dying

被引:35
作者
Wiese, M. [1 ]
Dew, A. [1 ]
Stancliffe, R. J. [1 ]
Howarth, G. [2 ]
Balandin, S. [1 ]
机构
[1] Univ Sydney, Fac Hlth Sci, Lidcombe, NSW 1825, Australia
[2] Univ Plymouth, Fac Hlth Educ & Soc, Plymouth PL4 8AA, Devon, England
关键词
ageing; community living staff; death; dying; end of life; intellectual disability; END-OF-LIFE; MENTAL-RETARDATION; PALLIATIVE CARE; DEATH; COMMUNICATION; SERVICES; ADULTS; BEREAVEMENT; IMPACT; FOCUS;
D O I
10.1111/j.1365-2788.2012.01593.x
中图分类号
G76 [特殊教育];
学科分类号
040109 ;
摘要
Background The aim of this study was to explore the way in which community living staff engaged with people with intellectual disability (ID) about dying and death. Method Guided by grounded theory methodology, focus groups and individual interviews were conducted with staff who had either no experience with client death, experience of a client sudden death, or a client death experience which was pre-dated by a period of end-of-life care. Results While in principle, staff unanimously supported the belief that people with ID should know about dying, there was limited in-practice engagement with clients about the topic. Engagement varied according to staff experience, client capacity to understand and the nature of the opportunity' to engage. Four opportunities' were identified: when family die', incidental opportunities', when clients live with someone who is dying' and when a client is dying'. Despite limited engagement by staff, people with ID are regularly exposed to dying and death. Conclusions People with ID have a fundamental right to know about dying and death. Sophisticated staff skills are required to ensure that people with ID can meaningfully engage with end-of-life issues as opportunities arise.
引用
收藏
页码:980 / 992
页数:13
相关论文
共 51 条
  • [1] Alberto P.A., 2008, APPL BEHAV ANAL TEAC
  • [2] [Anonymous], 2005, Brokerage and Closure: An Introduction to Social Capital
  • [3] [Anonymous], 2007, HDB PARLIAMENTARIANS
  • [4] [Anonymous], 2002, Qualitative Research and Evaluation Methods
  • [5] [Anonymous], 1989, DISENFRANCHISED GRIE
  • [6] [Anonymous], 2009, LEARNING DISABILITY
  • [7] Simulated and community-based instruction involving persons with mild and moderate mental retardation
    Bates, PE
    Cuvo, T
    Miner, CA
    Korabek, CA
    [J]. RESEARCH IN DEVELOPMENTAL DISABILITIES, 2001, 22 (02) : 95 - 115
  • [8] Living circumstances of children and adults with mental retardation or developmental disabilities in the United States, Canada, England and Wales, and Australia
    Braddock, D
    Emerson, E
    Felce, D
    Stancliffe, RJ
    [J]. MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES RESEARCH REVIEWS, 2001, 7 (02): : 115 - 121
  • [9] The Origins of "Best Practices" in the Principle of Normalization and Social Role Valorization
    Caruso, Guy A.
    Osburn, Joseph A.
    [J]. JOURNAL OF POLICY AND PRACTICE IN INTELLECTUAL DISABILITIES, 2011, 8 (03) : 191 - 196
  • [10] Clark D., 1999, FACING DEATH REFLECT