Hospital Experiences of Children with Intelletual Disabilities: Child, Parent and Nurse Perspectives

Monday, 22 July 2013: 2:10 PM

Megan Aston, RN, PhD
School of Nursing, Dalhousie University, Halifax, NS, Canada
Lynn Breau, PhD, R. Psych
Psychology Services, Glenrose Rehabilitation Hospital, Edmonton, AB, Canada
Emily F. MacLeod, MA, BACS
Centre for Pediatric Pain Research (South), IWK Health Centre, Halifax, NS, Canada

Learning Objective 1: The learner will be able to understand the unique hospital experiences of children with intellectual disabilities, their parents and nurses.

Learning Objective 2: The learner will be able to understand how discourse analysis can be applied to the hospital experiences of children with intellectual disabilities.

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.