‘Smiles and laughter and all those really great things’: Nurses' perceptions of good experiences of care for inpatient children and young people with intellectual disability

Abstract

Aim:To understand what constitutes a good experience of care for inpatient children and young people with intellectual disability as perceived by nursing staff.Design: Interpretive qualitative study.Methods: Focus groups with clinical nursing staff from speciality neurological/neurosurgical and adolescent medicine wards across two specialist tertiary children's hospitals in Australia were conducted between March and May 2021. Data analysis followed interpretative analysis methods to develop themes and codes which were mapped to a conceptual model of safe care.Results: Six focus groups with 29 nurses of varying experience levels were conducted over 3 months. Themes and codes were mapped to the six themes of the conceptual model: use rapport, know the child, negotiate roles, shared learning, build trust and relationships, and past experiences. The analysis revealed two new themes that extended the conceptual model to include; the unique role of a paediatric nurse, and joy and job satisfaction, with a third contextual theme, impacts of COVID-19 pandemic restrictions. With the perspectives of paediatric nurses incorporated into the model we have enhanced our model of safe care specifically for inpatient paediatric nursing care of children and young people with intellectual disability. Conclusion:Including perceptions of paediatric nurses confirmed the position of the child with intellectual disability being at the centre of safe care, where care is delivered as a partnership between nursing staff, child or young person and their parents/ family and the hospital systems and processes.

Nurses’ perception of what makes a good care experience for children and young people with intellectual disabilities align with parents’ perceptions

“…The previously identified themes are (1) Use rapport, (2) Know the child, (3) Negotiate roles, (4) Shared learning, (5) Build trust and (6) Relationships and previous experiences 2. This study3 enhances and extends the model by integrating nursing staff experiences. There are limited studies regarding inpatient CYP with ID which primarily focus on challenges, whereas this study3 aims to focus on what contributes to a good care experience.…”

“…This study3 enhances and extends the model by integrating nursing staff experiences. There are limited studies regarding inpatient CYP with ID which primarily focus on challenges, whereas this study3 aims to focus on what contributes to a good care experience.…”

“…The themes identified in this study aligned to Mimmo et al ’s2 conceptual model and the six themes previously established. However, three additional themes were found when analysing nursing staff perceptions, which were not presented in the original conceptual model: (1) The unique role of a paediatric nurse (2) Joy and job satisfaction and (3) Impacts of COVID-19 pandemic restrictions on the care delivery 3…”

“…The study3 used a qualitative interpretive design, using 29 nurses across six focus groups. Nursing staff were recruited from two specialist tertiary children’s hospitals, across one organisation, from specialist neurological, neurosurgical, and adolescent medical wards.…”

“…This study expands on a previous framework2 but adds valuable insights from nursing staff. The findings demonstrate commonalities between staff and parent perceptions which offers an understanding of shared goals, such as building relationships; however, there is a lack of patient voice 3. One study examined patient perspectives, alongside parents and nursing staff4 and one study5 explored experiences of CYP with ID independently.…”