Hospitalized children with intellectual disability: Parents as partners in their care

Abstract

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.