BackgroundResearch 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.MethodWe 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.ResultsWe 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.ConclusionLack 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 registrationPROSPERO 2017: CRD42017077703.Electronic supplementary materialThe online version of this article (10.1186/s12912-018-0316-9) contains supplementary material, which is available to authorized users.

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.

Registered nurses [RNs] are within the frontline of professional nursing and are expected to provide a diverse range of health care services to a varied and heterogenic group of patients. They are bound by a code of ethics that mandates that nurses respect all human rights regardless of the patient’s abilities or functional status. However, research implies that RNs do not feel adequately prepared to support patients with intellectual and developmental disabilities [IDD], and that patients with IDD are often misinterpreted and misunderstood in care. Gaining in-depth knowledge about how RNs can experience nursing for this group of patients is therefore of great importance. The overall aim of this thesis was to describe, appraise, integrate and synthesise knowledge concerning nursing for patients with IDD. A further aim was to explore and describe Swedish RNs’ perceptions of providing care for patients with IDD within a home health care setting. This thesis consisted of two studies designed to investigate various aspects of nursing and caring for patients with IDD. Paper I was a systematic review using a meta-ethnographic approach, and Paper II was an interview study using a qualitative descriptive, interpretive design. Data was collected by systematic data base searches (Paper I), and by individual interviews (Paper II). The systematic review comprised 202 RNs (Paper I) and the qualitative descriptive study comprised 20 RNs. In the systematic review, data was analysed by a Line of Argument Synthesis [LOAs] as described by Noblit and Hare (1988), while the data in Paper II was analysed by content analysis. Nurses’ experiences and perceptions of nursing patients with an IDD could be understood from 14 LOAs. Six of these were interpreted to reflect a tentatively more distinctive and unique conceptualisation of RNs’ experience of nursing for this group of patients. The remaining eight LOAs were interpreted to reflect a conceptualisation of nursing per se that is a universal experience regardless of context or patient group (Paper I). In Paper II, the nurse’s perceptions were interpreted to be reflected by three overarching categories: Nursing held hostage in the context of care, Care dependant on intuition and proven experience and Contending for the patient’s right to adequate care. Absence of understanding and knowledge about IDD might be an explanation for the “otherness” that still appears to surround this group of patients. Concentrating on the person behind the disabilities label as well as on abilities instead of disabilities could be a reasonable approach in nursing care for patients with IDD. Thus, implementing nursing models focusing on person-centred care could support RNs to moderate the health and care inequalities that are still present among patients with IDD (Paper I). As a result of the home health care context and its organisation, the RNs perceived themselves as unable to provide care in accordance with their professional values. Not mastering the available augmentative and alternative communication tool additionally meant having to provide care based on second-hand information from support staff. The RNs also perceived that caring for this group of patients involved a daily battle for the patient’s rights to receive the right care at the right place and time and by the right person (Paper II). Hence, a broad base of evidence on what actually works best in clinical practice for this group of patients, particularly in the home care context, is still needed.