RESUMO
PURPOSE: To explore nurses' experiences of establishing partnerships with parents for pain care of hospitalized children with cognitive impairment (CI) and identify related facilitators and barriers. DESIGN AND METHODS: In this qualitative, interpretive descriptive study, individual semi-structured interviews were conducted via videoconferencing with pediatric nurses from inpatient wards in a Canadian pediatric quaternary hospital. Verbatim transcripts were analyzed using an inductive, data-driven thematic analysis approach. RESULTS: Eleven nurses were interviewed. The overarching theme was Assessing Pain as an Outsider: "A Complete Guessing Game". Seven major themes were identified.: Relying on Parent Expertise for Pain Assessment, Brainstorming with Parents for Pain Treatment, Supporting Parents as Advocates for Pain Care, Individualizing Pain Care with Parents, Involving the Child in Pain Care: A Spectrum, Barriers to Partnership in Pain Care and Facilitators to Partnership in Pain Care. CONCLUSIONS: Nurses described the many ways they involve parents as partners in pain care. However, nurses shared strong feelings of uncertainty associated with pain care in children with CI. Consequently, nurses felt the need to rely on parents for appropriately assessing and treating pain in children with CI. Findings highlighted the practice and education gaps that may contribute to nurses' uncertainty and reliance on parents. PRACTICE IMPLICATIONS: By identifying related practice and education gaps, healthcare organizations can implement strategies to further support nurses in establishing partnerships and potentially optimize pain care practices.
RESUMO
Children with intellectual disability experience a higher prevalence of dental disease, obesity, challenging behaviours, and mental health disorders compared to children without intellectual disability. Children with intellectual disability concurrently face health and social service navigational barriers that are associated with unresolved health needs and hospital admissions, and parent burnout and employment interruptions. In this study, we explored the knowledge gap of how carers and governmental agencies, providing services, understand intellectual disability using discourse analysis, and a theoretical framework applying Deleuze and Guattari's concepts of the rhizome and stratification. We found that children with intellectual disability were stratified into eligible or ineligible service recipients through the diagnostic process that prioritized specified characteristics. Carers did not perceive that their children's unique characteristics and needs were accounted for within the diagnostic process and expressed feelings of being dismissed by clinicians and providers in decision-making about priority needs and services.