Portal de Periódicos da CAPES

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

2020; Wiley; Volume: 33; Issue: 5 Linguagem: Inglês

10.1111/jar.12713

1468-3148

Kate Oulton, Debbie Sell, Faith Gibson,

Family and Patient Care in Intensive Care Units

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.