Hospital experiences of older people with intellectual disability: Responses of group home staff and family members RUTH WEBBER 1 , BARBARA BOWERS 1,2 & CHRISTINE BIGBY 3 1 Australian Catholic University, Victoria, Australia, 2 University of Wisconsin–Madison, USA, and 3 La Trobe University, Victoria, Australia Abstract Background This study reports on the hospitalisation experiences of older adults with intellectual disability living in group homes. Methods Grounded dimensional analysis was used to guide data collection and analysis. Group home residents were tracked prospectively over a 3-year period. Interviews were conducted with family, group home, and aged care staff and managers, and some residents. Results Findings highlighted the difficulty people with intellectual disability experience in hospital settings. Findings revealed extensive strategies undertaken by family members and group home staff to improve hospital experiences. Ageing of the family members and staffing implications for group homes complicated efforts to improve hospital experiences. Conclusions The current absence of systems to accommodate the special needs of people with intellectual disability in hospital settings has significant consequences for group homes, family members, hospital staff, and residents. Most hospital systems appear to be poorly designed to care for this vulnerable population. Keywords: hospital, intellectual disability, group homes, communication Introduction Rapid improvements in health care and living environments have led to dramatic improvements in life expectancy for people with intellectual disability (ID) (Janicki, Dalton, Henderson, & Davidson, 1999; Yang, Rasmussen, & Friedman, 2002). However, people with ID continue to experience a higher burden of illness than the general population (Beange, McElduff, & Baker, 1995; Brown & Gill, 2002; Connolly, 2001; Fisher & Kettl, 2005; Janicki et al., 1999; Walsh, Kastner, & Criscione, 1997). This difference is reflected in over- representation of people with ID in hospital settings (Janicki et al., 1999; Walsh, Heller, Schupf, & van Schrojenstein Lantman-de Valk, 2001). Relatively negative hospital experiences of people with ID have been documented in several prior studies (Dewar, Tocher, & Watson, 2003; Horwitz, Kerker, Owens, & Zigler, 2000; Iacono & Davis, 2003; Mencap, 2004; Wallace & Beange, 2008). Reported problems include staff inattention to basic needs such as toileting and nutrition, poor commu- nication between staff and patient, oversedation, medication errors, patient fear and anxiety, insuffi- cient pain management, and poor discharge prepara- tion (Durvasula & Beange, 2001; Hemsley, Balandin, & Togher, 2008; Ouellette-Kuntz et al., 2005). The role of families, particularly parents, has been prominent in the literature, but the hospitalisa- tion experiences of older people who no longer live with their parents and who live in supported accommodation or independently has not been examined (Backer, Chapman, & Mitchell, 2009). Most of the studies examining hospital experiences of people with ID have reported an ongoing family presence, sometimes 24 hours a day, during hospital stays. Parents have described this vigilance as necessary to ensure adequate care and safety, and to minimise fear and anxiety (Bowers, Bigby, & Webber, 2009; Hemsley et al., 2008). It is probable that younger persons with ID who are in hospital will have parents able to provide ongoing care. Older adults with ID, however, are Correspondence: Professor Ruth Webber, Quality of Life and Social Justice Research Centre, Australian Catholic University, 115 Victoria Parade, Fitzroy, Vic. 3065, Australia. E-mail: ruth.webber@acu.edu.au Journal of Intellectual & Developmental Disability, September 2010; 35(3): 155–164 ISSN 1366-8250 print/ISSN 1469-9532 online ª 2010 Australasian Society for the Study of Intellectual Disability, Inc. DOI: 10.3109/13668250.2010.491071