Adults with intellectual disability want to socialise, have friends and be part of their community. For this to be achieved, they recognise the need to seek some form of support. With appropriate and targeted support, adults with intellectual disability can move from social exclusion towards supported inclusion and experience richer lives.
Children with intellectual disability (ID) experience chronic and pervasive limitations across intellectual and adaptive functioning. They are also at risk of developing co-morbidities. They are likely to be hospitalised more frequently and for longer periods of time than other children. The purpose of this study was to understand the experiences of nurses when caring for children and teenagers with ID in an acute paediatric hospital setting. The aim of the research was to inform future directions for the delivery of equitable and effective care for this vulnerable population. This study used a qualitative thematic analysis of individual interviews conducted with eight registered and enrolled nurses who provided care to children and adolescents with ID in an Australian paediatric acute hospital setting. Themes which emerged from this analysis were (1) Recognising similarities and managing differences; (2) Nurse–parent relationships; and (3) Caring for children with ID requires additional time. This study highlights that navigating care delivery and relationships when working with young people with ID and their caregivers in an acute care setting is complex. Nursing children with ID in hospital requires sophisticated skills. To ensure quality healthcare for patients with ID, a range of strategies are proposed.
Understanding the skills required of nurses caring for people with intellectual disability provides the opportunity for more nurses to develop these specialised relational skills and for this branch of nursing to attract professional recognition that is currently limited.
Aims
To explore the perceptions of Australian nurses working in disability‐specific settings and/or roles, about: (a) nursing people with intellectual and developmental disability living in Sydney; and (b) the utility and applicability of professional practice standards designed specifically for intellectual and developmental disability nursing.
Design
A qualitative research design was used to guide the study and our analysis utilized the constant comparative approach to thematic data analyses.
Methods
Individual in‐person interviews were conducted with 18 nurses working in intellectual and developmental disability‐specific settings and/or roles across the state of New South Wales between July – December, 2017. Participants described what it is that sets intellectual and developmental disability nursing apart from other nursing specialties, and the rewards and challenges of their role. Questions were also asked about professional practice standards in general and more specifically intellectual and developmental disability professional practice standards. Data were analysed thematically.
Findings
Three themes reflected intellectual and developmental disability nurses’ perceptions: (a) a unique investment in the nurse/patient dyad; (b) a bridge between disparate systems; and (c) an ambiguous future. Nurses reported variable understanding of professional practice standards designed for intellectual and developmental disability nursing, but also a belief in their importance.
Conclusion
The intellectual and developmental disability nurses’ experience of care accounts for the specific needs of patients with intellectual and developmental disability and suggests the importance of professional practice standards which acknowledge the changing landscape of care in Australia prompted by the implementation of the National Disability Insurance Scheme.
The specialist field of intellectual disability nursing has been subjected to a number of changes since the move towards deinstitutionalisation from the 1970s. Government policies sought to change the nature of the disability workforce from what was labelled as a medicalised approach, towards a more socially oriented model of support. Decades on however, many nurses who specialise in the care of people with intellectual disability are still employed. In Australia, the advent of the National Disability Insurance Scheme offers an apt moment to reflect upon these decades of specialised nursing care as the context of this nursing care will continue to evolve. A review of the published literature was conducted to explore what has shaped the field in the past and how this might inform the future of this speciality area under new policy and service contexts. People with intellectual disability have specific health and support needs that require a specialised workforce. Specialist nurses continue to be needed for people with intellectual disability.
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