What does respite care mean for palliative care service users and carers? Messages from a conceptual mapping

Abstract

Over the coming years, as an ageing population with multiple chronic illnesses increases, the number of carers and paid carers is set to decrease. There is, therefore, an urgent need to understand what types of services are most supportive in helping to sustain caring relationships. Respite care is frequently mentioned as a key factor in supporting family carers and improving their quality of life but there is a lack of research to support its efficacy. This paper will present a conceptual map of respite care in order to promote a greater understanding of the multiple tensions that the palliative care respite literature reveals. As learning more about carer's needs and the complexities of the caring relationship develops, it is an appropriate time to map the key messages from the literature to help us understand what respite care does actually mean to palliative care service users and carers.

A Social Capital Framework for Palliative Care: Supporting Health and Well-Being for People With Life-Limiting Illness and Their Carers Through Social Relations and Networks

“…4,6 The needs of informal carers are significant but remain largely unmet. 7 These needs are best understood in the context of relationships, 8 yet the value of relationships as perceived by carers is underreported in the literature. 9 Life-limiting illness is often isolating for patients and carers alike, 10 many times leading to a burden of social loss.…”

Family members' caregiving situations in palliative home care when sitting service is received: The understanding of multiple realities

“…The big question is to what degree palliative care and sitting service were prioritized in the municipality. Wolkowski et al (2010) have reported ambivalence toward providing respite care, where sitting service is a part. The reason was a lack of consensus concerning the aim for the service, that is, who would benefit from this service, the ill person or the caregiver, and which organization should take responsibility for providing this service.…”

“…To prevent adverse effects of caregiving could be addressed by both informal and formal support (Grande et al, 2009). One requested and valued form of support for family caregivers is the sitting service (Shipman et al, 2005; Wolkowski et al, 2010; Ashworth & Baker, 2000). Sitting service in this study means support for the patient and family caregivers during a longer time than an ordinary care visit, offering help, support, and respite during the dying process.…”

“…On a specialist level of palliative home care the organization for sitting service is more obvious with well-educated staff. Internationally, the umbrella concept respite care is used to describe various supportive actions related to the patient and/or family caregivers (Wolkowski et al, 2010; Payne et al, 2004; Skilbeck et al, 2005). Receiving sitting service can offer a sense of safety and security (Wallerstedt et al, 2011), a break from care responsibilities and a possibility to rest for family caregivers (Kristjanson et al, 2004).…”

Volunteering at an adventure camp for epidermolysis bullosa

“…Informal caregivers to disabled people frequently report the need for short breaks, domestic help and respite care 3 . The 2010 EB adventure camp played an important role as respite care, helping informal caregivers to improve their quality of life while providing opportunities for the patients to experience active outdoor activities 4 …”