Rest assured? A study of unpaid carers’ experiences of short breaks

Author(s): Institute for Research and Innovation, Shared Care Scotland (IRISS), Coalition of Carers in Scotland, and Minority Ethnic Carers of Older People Project

Published In: Dunfermline, Fife, Scotland: Shared Care Scotland

Study Aim/Purpose: This report explored the benefits, limitations, factors affecting access to and recommendations for improvement to short breaks (also known as respite care) provided by formal services, family, and friends. 

Summary of Methods: Findings are based on the responses of 1210 caregivers to a country-wide survey distributed through carer centers across Scotland. The survey was distributed by mail, links on website postings, and other communication channels of the carer organizations. Surveys were also distributed to a random sample of carers served by another organization (MECOPP) to reach minority ethnic and lesbian, gay, bisexual and transgender people. In addition to the survey, qualitative research (focus groups with 36 carers and 13 one-on-one interviews) were conducted using semi-structured protocols. Analysis of results was descriptive, summarizing survey responses and supplementing that information with common themes and quotes from carers based on the qualitative data collection. 

Summary of Results: More than one-half (57%) of carers surveyed had not taken a break from caring. Among black and minority ethnic carers, almost two-thirds (63%) had not had a break from caring. Forty-three percent of those who had not had a short break indicated that this was because they did not know how to access short breaks. Other barriers identified included: difficulty with the planning process (including sometimes only being given short notice about respite care availability), a lack of appropriate and personalized care, carers’ guilt about giving up the caring role even for short breaks, and uncertainty about eligibility. Among those who had accessed respite, when asked what kind of respite services they used, 57% indicated that they had used “social work services” and half of those carers also used at least one other support (e.g. friends, voluntary organizations, health services, and respite through direct payments). Most carers who had used respite were satisfied with the quality of the break, the choice, the support available to organize it, and the length of respite time provided. Respite users were most commonly dissatisfied with how often respite was provided. Qualitative input indicated that short breaks were fundamental to help alleviate the physical and emotional demands of caring, sustain the caring relationship, and prevent admission to residential care. 

Study Limitations (as cited by authors): None mentioned 

Authors’ Discussion/Conclusions: The authors made the following recommendations for short breaks: improve national and local planning, including the engagement of carers in decisions about the future of short breaks programming; expand information about and access to short breaks; address the challenges and opportunities presented by allowing carers to self-direct the supports they need; help families and communities support one another; improve local data information systems and national performance data, and implement rigorous approaches to measure the reach and impact of short breaks, including a focus on poorly served groups.