Does respite care address the needs of palliative care service users and carers? An exploration of their perspectives and experience of respite care

Abstract

Introduction There are clear indications that over the coming years, an increasing amount of support for carers of patients with palliative care needs will be required. In recent UK policy and guidance respite care is frequently mentioned as a key factor in supporting carers. However, little is known about respite care services for people with palliative care needs and their carers and services appear to have developed on the assumption that they are a "good thing". This study addresses this gap in knowledge. It is located in a professional doctorate study where parallel application in practice is encouraged. Aims To explore the perspectives and experience of palliative care service users and carers of respite care. Method The participants were hospice service users and carers who had experienced respite care in that hospice and other settings. The approach was qualitative and data collection was carried out by unstructured informal interview and analysed in accordance with Grounded Theory strategies. Results Analysis of the data showed that there is nothing straightforward about respite care and the concepts of need and acceptance, vulnerability and resilience, risk and enablement, loss and gain all emerged. Discussion This study confi rmed that respite care suffers from a problem with defi nition and is often talked about in a trite way which doesn't refl ect the complexity of the caring relationship it is supposed to be sustaining. Conclusion Respite care is valued by palliative care service users and carers. The articulation of respite care needs and the insights gained in this study have the potential to infl uence practice and provide a platform for service development and improvement.

Pasienters opplevelse av trygghet med palliativ omsorg i hjemmet

“…Studier har vist at trygghet inkluderer en opplevelse av å bli respektert og anerkjent, å bli informert og involvert i pleie og behandling og å ha en tillitsfull relasjon til helsepersonell som er kompetente og til å stole på, og ikke lover mer enn de kan holde (Milberg et al, 2014;Milberg et al, 2012). Opplevelsen av trygghet har også blitt knyttet til helsetjenesten som system (Funk et al, 2009) med kontinuitet, samarbeid (den Herder-van der Eerden et al, 2017;Fjose et al, 2018;Klarare et al, 2017), tilgjengelige tjenester 24/7 (Sarmento et al, 2017) og avlastning til pårørende fra omsorgsoppgaver (Wolkowski & Carr, 2017).…”