Swedish registered nurses’ perceptions of caring for patients with intellectual and developmental disability: A qualitative descriptive study

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.

Experiences of nurses working at day‐service centres for people with intellectual disabilities/intellectual and physical disabilities and their interactions with service‐users

“…Nurses in day‐service centres create an environment in which service‐users can connect with society by maintaining health conditions and activities rather than relieving boredom and a lack of stimulation for people with disabilities (Femia et al, 2007). The findings of this study are in line with Appelgren et al (2022), who highlight that nurses, nevertheless, felt that the care had to be based on the perspective of patients with intellectual and developmental disabilities, and it has to be what they wanted before it was modified to what seems reasonable. Furthermore, the nurses were trying to monitor the progress of the service‐users' health, including their diet, so that they could remain involved and ensure that they do not miss the right moment to intervene, suggesting the importance of a long‐term perspective.…”

“…This is necessary because people with severe and profound intellectual disabilities also use non‐verbal methods, such as facial expressions, sounds, movement, body posture or muscle tension (Vos et al, 2010), to express themselves. Furthermore, a long‐term provider–patient relationship is considered a prerequisite for nurses to understand patients with intellectual and developmental disabilities (Appelgren et al, 2022). Previous studies have focused on the stress nurses experience as they take care of people with intellectual disabilities, finding that although devoid of overt prejudice and discrimination, their perceptions can be infused with attitudes of infantilisation and paternalism (Capri & Buckle, 2015; Desroches, 2020).…”

Healthcare provision for Swedish persons with intellectual and developmental disabilities

“…A higher degree of unplanned healthcare visits (Ahlström et al, 2020), shortcomings in end‐of‐life care (Segerlantz et al, 2019, 2020), together with premature deaths (Hirvikoski et al, 2021) and lifestyle challenges (Flygare Wallén et al, 2018) indicate that provision of healthcare for persons with IDD requires improvements. This would include training of healthcare professionals (Appelgren et al, 2022; Swedish Association of Local Authorities and Regions, 2018) and staff in LSS services (Matérne & Holmefur, 2022; Swedish Association of Local Authorities and Regions, 2018), as well as the development of national guidelines (Hirvikoski et al, 2021). An increased support in coordinating health‐ and social care would also be beneficial (SAHCSA, 2016), as would the possibility to follow the health of people with IDD at both individual and group levels (Swedish Association of Local Authorities and Regions, 2018).…”

“…An interview study by Appelgren et al (2022) provides one possible explanation for the difficulties in accessing planned healthcare. Nurses felt that they were unable to provide adequate care in a home‐care context, and they had to fight for their patients' rights to timely and adequate care, particularly when this involved psychiatric care.…”

The value and contribution of intellectual disability nurses/nurses caring for people with intellectual disability in intellectual disability settings: A scoping review

“…A three-pronged approach focused on leadership, education and practice as a collective responsibility (Clarke, 2018) is needed to nurture a spirit of inquiry that facilitates and encourages evidence-based practice (Warren et al, 2016). While intellectual disability nurses utilise and implement evidence-based knowledge and practice from a research perspective, it is recommended that there is a need to support and develop the research conduct of intellectual disability nurses (Appelgren et al, 2021). What still seems to be absent is a broad base of evidence within intellectual disability nursing on what works best for this group of clients in a care context.…”