Respite: carers’ experiences and perceptions of respite at home

Nan Greenwood,Ruth Habibi,Ann Mackenzie

doi:10.1186/1471-2318-12-42

Nan Greenwood, Ruth Habibi + Show 1 more

Open Access

https://doi.org/10.1186/1471-2318-12-42

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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.

Highlights

Informal carers play an important role in supporting people with long-term conditions living at home
Carers Awareness of the numbers of carers and the vital role they play in supporting people with long-term conditions is growing
While it is acknowledged that carers often gain satisfaction from their caring role, for example [3,4,5,6,7], it is well recognised that being a carer can be stressful and may adversely affect carers’ social networks and physical and emotional health [8]

Summary

Introduction

Informal carers play an important role in supporting people with long-term conditions living at home. According to the Office of National Statistics (ONS), by 2033, there are expected to be over three million people aged over 85 years making up five percent of the UK population and nearly a quarter of the total population will be 65 or older [2] Many of these people will be supported by a spouse, adult child or both. While it is acknowledged that carers often gain satisfaction from their caring role, for example [3,4,5,6,7], it is well recognised that being a carer can be stressful and may adversely affect carers’ social networks and physical and emotional health [8]. Carers often report high levels of stress, depression and anxiety as well as physical health problems [11] They sometimes describe family conflict and negative feelings such as anger and frustration [12]

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