Respite: carers’ experiences and perceptions of respite at home

Abstract

BackgroundInformal carers play an important role in supporting people with long-term conditions living at home. However, the caring role is known to have adverse effects on carers such as poorer emotional health and social isolation. A variety of types of respite may be offered to carers but little is known about the benefits of respite, carers’ experiences with it, or their perceptions of care workers. This study therefore investigated these experiences and perceptions.MethodRecorded, semi-structured interviews were undertaken with twelve carers receiving weekly four-hourly respite. Carers were either caring for a person over sixty or were over sixty themselves. Interviews were analysed thematically.Results and DiscussionRespite sometimes alleviated carers’ constant sense of responsibility for their cared for. Trust, whether in the service provider or individual care workers, was essential. Carers lacking this trust tended to perceive respite as less beneficial. Low expectations were common with carers often unwilling to find fault. Care workers were frequently seen as very kind with some carers valuing their company. Care workers who were flexible, communicated well and responded to the cared for’s needs were valued. Stimulation of the cared for during respite was very important to most carers but the perceived benefits for carers were often very individual. Many carers used respite to catch up with routine, domestic tasks, rarely using it to socialise.ConclusionsFor many carers, respite was a way of maintaining normality in often difficult, restricted lives. Respite allowed continuation of what most people take for granted. Carers frequently viewed respite as intended to improve their cared for’s quality of life, rather than their own. This centrality of the cared for means that carers can only really benefit from respite if the cared for is happy and also seen to benefit. Future research should investigate the perspectives of carers and their cared for, focussing on different demographic groups by features such as age, gender, ethnicity and diagnostic groups. However, without greater clarity about what respite is intended to achieve, clear evidence of a positive impact of this intervention may remain difficult to identify.

Perceptions on technology for volunteer respite care for bedridden elders in Chile

“…The partnership between caregiver, care recipient, and respite provider should be the central component of respite service, although caregiver and care recipient may have different outlooks and benefit in different ways from respite care. The present study found that the caregivers would accept volunteer respite care as long as the dependent person felt or appeared comfortable and agreed to letting another person care for him or her, which has also been reported by other authors (Greenwood et al, 2012; Neville, Beattie, Fielding, & MacAndrew, 2015; Stirling et al, 2014) and highlights the importance of the relationship between all three stakeholders.…”

“…Another desirable characteristic of the volunteer, reported by the caregivers, is that they should belong to a volunteer service institution. Similar results were found in the UK, where informal caregivers of elders trusted in the good service provided by paid and voluntary caregivers due to the fact that they were recommended by a government agency (Greenwood et al, 2012). Several studies report that the informal caregiver’s trust is partially based on its trust in the institution that provides the respite service, as well as its trust in the person providing the care.…”

“…The reasons that support this claim are related to the need to carry out other activities which they are unable to carry out while caring for an elder. This is also supported by evidence in the literature that explains that caregivers would devote their free time to carrying out household chores, medical assistance, rest, recreational activities and work (Greenwood, Habibi, & Mackenzie, 2012; Mastel-Smith & Stanley-Hermanns, 2012; Moule et al, 2014; Stirling, Dwan, & Mckenzie, 2014). …”

“…Although caregivers are willing to access respite care, they lay out obstacles similar to those stipulated in the literature, such as the need to constantly supervise the dependent person due to reasons such as concern for the elder’s safety and a heightened sense of responsibility and guilt that makes it difficult to leave the elder alone (Greenwood et al, 2012; Moule et al, 2014). The present study further examines these obstacles to a successful partnership, also relating the desirable traits of the volunteer, where the caregivers consider that the person providing the care, whether paid or voluntary, provide emotional support and have knowledge on caring for elders; at the same time, it is of the highest importance that the person have prior experience in this work (Greenwood et al, 2012; Neville et al, 2015; Stirling et al, 2014).…”

“…The present study further examines these obstacles to a successful partnership, also relating the desirable traits of the volunteer, where the caregivers consider that the person providing the care, whether paid or voluntary, provide emotional support and have knowledge on caring for elders; at the same time, it is of the highest importance that the person have prior experience in this work (Greenwood et al, 2012; Neville et al, 2015; Stirling et al, 2014). Another desirable characteristic of the volunteer, reported by the caregivers, is that they should belong to a volunteer service institution.…”