The experiences of people with developmental disability in Emergency Departments and hospital wards

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Abstract

The aim of this study was to determine whether needs of people with developmental disability were met during visits to Emergency Departments and stays in hospital. Responses to a questionnaire were obtained from 328 clients of three Victorian organizations. Of 119 respondents who had attended a hospital within a year of completing the questionnaire, most indicated that their needs were met in the areas of hydration and nutrition, medication, mobility and discharge. There were significant associations between getting enough to drink and being able to move from a bed, and having a support person stay with the patient. These results suggested a great reliance on support people during hospitalizations. Issues raised in the questionnaire were explored in follow-up interviews with 11 respondents or their support people. Reliance on support people emerged as a strong theme in interview transcripts, as did hospital staff’s negative attitudes, and lack of skills and knowledge in developmental disability. These results are discussed in light of recent literature and the need to address issues in the larger context of the needs of support people and hospital staff.

Section snippets

Participants

Participants for the study were recruited through three major non-government disability service organizations. Two organizations provided services only to people with developmental disability (e.g., intellectual disability, cerebral palsy), and one organization provided services to both people with developmental disabilities and those with acquired disabilities (e.g., stroke, traumatic brain injury). Criteria for inclusion were that participants have a developmental disability and were aged 18

Respondent characteristics

Of the 328 people who responded, 159 were male and 167 were female. They were aged from 18 to 80 years (mean=38 years). Twenty-eight of the questionnaires were completed by people with disability themselves, while 295 were completed by a support person (5 people didn’t answer this question). It was reported that 223 people had an intellectual disability and 238 had a physical disability, such that they used a wheelchair or needed help with mobility. People were asked to indicate the methods

Discussion

The first question addressed in this study was the frequency with which adults with developmental disability or people who support them report problems with care provided in Emergency Departments or hospital wards. Our ability to address this question was limited by the poor response rate, and the fact that only a little over a third of respondents (119 of the total 328 respondents) were reporting about experiences that had occurred within a year of completing the questionnaire. Despite this

Acknowledgements

Thanks are extended to the organizations and their clients who participated in this study and to Dr. Georgina Sutherland for her comments on drafts of the manuscript. Portions of this paper were presented at the Australian Society for the Study of Intellectual Disability, Melbourne, November 2001.

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