Hospital experiences of children with intellectual disabilities: Child, parent and nurse perspectives
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Megan Aston, RN, PhD; Emily F. MacLeod, MA, BACS; Lynn Breau, PhD, R. Psych
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Session presented on: Monday, July 22, 2013:
Purpose: Children with intellectual disabilities (ID) have higher rates of hospital admission and experience longer hospital stays than typically developing children. Their reduced intellectual and social capacity can hinder their ability to communicate their needs and creates a unique hospital experience that is often invisible. There are few research studies that include the voices of children with ID with respect to hospital experiences. The purpose of this study was to explore hospital experiences from the perspective of children with ID, their parents and nurses who cared for them.
Methods: Feminist poststructuralist methodology was used throughout all stages of the research. Data collection included qualitative semi structured face to face interviews with 12 nurses, 17 parents and 8 children with ID in Halifax Nova Scotia Canada. Discourse analysis examined beliefs, values and practices of all participants in the context of personal, social and institutional discourses. Relations of power then helped to frame participant's experiences that were both unique and similar. Emerging themes were also compared across groups to identify common themes.
Results: The five themes that emerged were 1) Labels: What's in a name? 2) The impact of ID on relationship establishment 3) Role Negotiation: Who's the expert? 4) ID Documentation: Supplemental or foundational? 5) Reducing stigma through education and knowledge.
Conclusion: Institutional and social discourses regarding children with ID informed the hospital experiences of children with ID, their parents, and the nurses who cared for them. Such discourses were also challenged by many participants. Ongoing discussion between health care professionals and families regarding roles such as 'expert' and 'caregiver' can help to minimize conflict and tension that exists when assumptions are made regarding these roles. Additional knowledge and education will help to reduce negative labels associated with ID. Documentation of ID information should be further explored and understood.
24th International Nursing Research Congress Theme: Bridge the Gap Between Research and Practice Through Collaboration. Held at the Hilton Prague Hotel.
Items submitted to a conference/event were evaluated/peer-reviewed at the time of abstract submission to the event. No other peer-review was provided prior to submission to the Henderson Repository.
Type | Presentation |
Acquisition | Proxy-submission |
Review Type | Abstract Review Only: Reviewed by Event Host |
Format | Text-based Document |
Evidence Level | N/A |
Research Approach | N/A |
Keywords | Hospital Experiences; Qualitative; Children with Intellectual Disabilities |
Name | 24th International Nursing Research Congress |
Host | Sigma Theta Tau International |
Location | Prague, Czech Republic |
Date | 2013 |
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