End‐of‐Life Care and Dying: Issues Raised by Staff Supporting Older People with Intellectual Disability in Community Living Services

Abstract

End-of-life care represents a complex interaction between the care issues and the partners involved in care. Despite this complexity, staff were committed to the provision of end-of-life care.

Direct care workers’ experiences of grief and needs for support

“…Although an important body of research continues to expand on people with I/DD's experience with death and other losses, and how staff can serve as supports (Brickell & Munir, ; Clute, ; Read, Nte, Corcoran, & Stephens, ; Tuffrey‐Winje, ; Wiese, Dew, Stancliffe, Howarth, & Baladin, ; Wiese, Stancliffe, Baladin, Howarth, & Dew, ; Wiese, Stancliffe, Dew, Baladin, & Howarth, ), only a fraction of this research has focused on staff's personal experience with grief and bereavement in the intellectual and developmental disability (I/DD) field (Handley & Hutchinson, ; MacDermott & Keenan, ; McEvoy et al., ; Ryan, Guerin, Dodd, & McEvoy, ). Staff often experience loss when people with I/DD they care for die.…”

Implementation challenges in end-of-life research with adults with intellectual and developmental disabilities

“…Many adults with mild to moderate I/DD have an equivalent life expectancy (Bittles, et al, 2002) and often experience the same diseases related to aging as those in the general population (Haverman, et al, 2010). However, end-of-life research that includes the perspectives of people with I/DD remains limited (Tuffrey-Wijne, Hogg, & Curfs, 2007), with most research involving only the perspectives of staff (Todd, 2013; Wagemans, et al, 2013; Wiese, Stancliffe, Balandin, Howarth, & Dew, 2012) and is difficult to implement. People with I/DD are considered vulnerable because their capacity to consent to research may be affected by their disability, and historically, people with I/DD have been exploited in human subjects research.…”

Delaktig (även) på äldre dar : Åldrande och delaktighet bland personer med intellektuell funktionsnedsättning som bor i gruppbostad

“…Flera studier har undersökt personalens perspektiv på livets sista tid, död och sorgearbete bland äldre personer med intellektuell funktionsnedsättning (MacHale, McEvoy & Tierney, 2009;McCarron et al, 2010;Ryan et al, 2011;Wiese et al, 2012;Wiese et al, 2013). I Wiese et als.…”