ERIC Number: EJ1262980
Record Type: Journal
Publication Date: 2020-Sep
Pages: 10
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1360-2322
EISSN: N/A
Available Date: N/A
Hospitalized Children with Intellectual Disability: Parents as Partners in Their Care
Journal of Applied Research in Intellectual Disabilities, v33 n5 p917-926 Sep 2020
Background: Limited evidence exists of what hospital care is like for parents of children and young people (CYP) with intellectual disability (ID). Effective collaboration is often missing, with parents lacking trust in professionals, with feelings of being expected to care and consequently unable to leave their child. This paper focuses on what parents want from their relationship with healthcare professionals. Method: An ethnographic approach was used, including in-depth interviews and informal discussions with nine parents of CYP with intellectual disability. Researcher voice poems are interspersed with quotations to illustrate key findings. Results: Parents described the need for a genuine partnership with professionals. They identified seven elements that ideally characterize this partnership: Preparation, Accessibility, Reliability, Trust, Negotiation, Expertise and Respect (PARTNER). Conclusion: Children and young people with intellectual disability and their parents are frequent users of healthcare services. Getting it right from the outset is important to establish their trust in the system.
Descriptors: Hospitalized Children, Intellectual Disability, Parent Participation, Parent Attitudes, Health Personnel, Access to Health Care, Trust (Psychology), Expertise, Health Needs
Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www-wiley-com.bibliotheek.ehb.be/en-us
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A
Author Affiliations: N/A