ABSTRACT
Patients with intellectual and developmental disability (IDD) are often misinterpreted and misunderstood. Studies show that, in general, healthcare professionals have limited knowledge about IDD, and registered nurses (RNs) often report feeling unprepared to support this group of patients. Therefore, more knowledge about how to adequately address care for this patient group is warranted. This qualitative study employs an interpretative descriptive design to explore and describe Swedish RNs' perceptions of caring for patients with IDD, here in a home-care setting. Twenty RNs were interviewed between September 2018 and May 2019, and the resulting data were analysed through an inductive qualitative content analysis. The study adheres to consolidated criteria for reporting qualitative research (COREQ). Our analysis found that nurses' perceptions of caring for patients with an IDD could be understood from three overarching categories: nursing held hostage in the context of care, care dependent on intuition and proven experience and contending for the patients' right to adequate care. Our findings show that the home-care context and organisation were not adjusted to the needs of the patients. This resulted in RNs feeling unable to provide care in accordance with their professional values. They also explained that they had not mastered the available augmentative and alternative communication tools, instead using support staff as interpreters for their patients. Finally, on a daily basis, the RNs caring for this group of patients took an active stance and fought for the patients' right to receive the right care at the right time by the right person. This was particularly the case with issues involving psychiatric care.
Subject(s)
Developmental Disabilities , Nurses , Child , Humans , Patient Care , Qualitative Research , SwedenABSTRACT
BACKGROUND: Research suggests that registered nurses (RNs) do not feel adequately prepared to support patients with intellectual disability disorder (IDD). This is unsurprising, as few European health sciences curricula include undergraduate and graduate training courses in IDD. As RNs are often in the front line of care, eliciting in-depth knowledge about how they experience nursing this group of patients is vital. Our aim in this study was to develop a conceptual understanding about RNs' experiences of nursing patients with IDD. METHOD: We undertook a systematic review and meta-ethnography to synthesise qualitative research studies found in PubMed, CINAHL, PsycINFO, ERIC databases and by manual searching to identify additional studies. We condensed translatable second-order constructs, and developed an idiomatic translation. Finally, we formulated line of argument (LOA) syntheses to capture the core of the idiomatic translations. RESULTS: We included eighteen published studies from eight countries involving 190 RNs. The RNs' experience of nursing patients with IDD were reflected in 14 LOAs. Six of these reflected a tentatively more distinctive and at times unique conceptualisation of RNs' experience of nursing this group of patients. The remaining eight LOAs represented a conceptualisation of nursing per se, a conceptualisation of nursing that was interpreted as a universal experience regardless of context and patient group. CONCLUSION: Lack of awareness and knowledge are likely breeding grounds for the 'otherness' that still surrounds this group of patients. In encounters between patients and RNs, focusing on the person behind the disability label could be one way to secure relevant nursing care for patients with IDD. Undertaking appropriate under- and postgraduate education alongside the implementation of nursing models focusing on patient-centred care would help RNs in reducing the health and care inequalities this group of patients still face. TRIAL REGISTRATION: PROSPERO 2017: CRD42017077703.