Caring for people with intellectual and developmental disabilities : how can it be experienced and percieved by registered nurses?

Abstract: 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.