Short break funding and carers' outcomes

Introduction

This evidence summary seeks to address the following question relating to technology enabled support in health and social care: What is the current evidence on how short breaks funding impact carers’ outcomes.

About the evidence presented below

We searched on ProQuest, Google scholar, SSKS, SCIE database searching for terms like: “carers outcomes and respite care”, “carers outcomes and short breaks”, “carers wellbeing and short breaks”, “carers wellbeing and respite care”.The evidence is a mix of academic studies, grey literature from the social care sector.

Accessing resources

We have provided links to the materials referenced in the summary. Some materials are paywalled, which means they are published in academic journals and are only available with a subscription. Some of these are available through The Knowledge Network with an NHS Scotland OpenAthens username. The Knowledge Network offers accounts to everyone who helps provide health and social care in Scotland in conjunction with the NHS and Scottish Local Authorities, including many in the third and independent sectors. You can register here. Where resources are identified as ‘available through document delivery’, these have been provided to the original enquirer and may be requested through NHS Scotland’s fetch item service (subject to eligibility).

Where possible we identify where evidence is published open access, which means the author has chosen to publish their work in a way that makes it freely available to the public. Some are identified as author repository copies, manuscripts, or other copies, which means the author has made a version of the otherwise paywalled publication available to the public. Other referenced sources are pdfs and websites that are available publicly.

Background

Many people identify as carers at different points in their lives (Seddon &Prendergast, 2019). In Scotland existing legislation enshrines the rights of carers to access support - Carers (Scotland) Act 2016. The act specifically gives carers the rights to an adult carer support plan or young carer statement. This aims to identify each carer’s personal outcomes and needs for support through meaningful conversations with individual carers.

Many carers however, still do not have any support and respite from their caring role (Seddon &Prendergast, 2019). Breaks from caring responsibilities are recognised internationally as essential to support carer's health and enhance their resilience to care (Roberts & Struckmeyer, 2018).

Historically, the term ‘respite care’ has been used in the literature concerning short breaks for families with a child with an intellectual disability (Tait et al 2017). However, more recently, ‘short breaks’ has become the preferred term, partly to move away from the negative connotations of carers requiring respite from their cared for person, and also because short breaks now encompass a much wider range of supports, than just placements in specialist residential facilities (Welch, 2011).

Re-thinking Respite (The Older People’s Commissioner for Wales, 2018) calls for a fundamental shift in the way respite care is conceptualised and delivered, with opportunities for a short break taken together and/or apart and support for family and personal relationships, so that the carer and supported person can live as ‘ordinary life’ as possible (Seddon &Prendergast, 2019).

This evidence review considers how carers use short breaks and whether short breaks impact carers’ outcomes.

What respite care is available

In Scotland, Shared Care’s Service Catalogue (2021) highlights that a range of respite care options are available to carers. These include breaks away, days out and shorter, regular activities and sessions.

Caulfield et al (2021)also show that in Wales local 'respitality' provision included hotel breaks, spa weekends and caravan holidays, and presented a choice for the caring dyad to experience a break together or apart. Where the carers charity organised a group hotel or spa break, staff would accompany, organise transport and be there ‘if they need to talk to somebody’.

Short break usage and funding

In terms of usage of short breaks, Welch et al (2011)’s study on short breaks for families of children with disabilities showed that:

Most carers (88.7%) were currently using short breaks; many used over one type of break. Breaks included leisure activities, overnight breaks, centre-based breaks and breaks that took place at home or in community settings (not mutually exclusive categories).
In total, families received an average of 570 hours of short break support per year, although this varied from 1 hour per year to 4290 hours per year; 53.8% of families used 400 hours or less of breaks per year, 28.6% used 200 hours or less per year and 16.8% used 100 hours or less per year.
20.5% of families had experienced being turned down for at least one short break, 9.3% of children had been excluded from at least one short break and 8.3% of carers stated that their child was currently on a waiting list for a break.
Leisure and play short breaks were used by 62.5% of families (for an average 123 hours per year).
Overnight short breaks were used by 54.2% of families (for an average of 603 hours per year).
Paid carer but non centre-based short breaks were used by 57.1% of families (for an average of 361 hours per year).
Centre-based short breaks were used by 41.1% of families (for an average 506 hours per year).
Almost a quarter (24.7%) of family carers used unpaid carers for short breaks (for an average of 226 hours per year).

Many families used breaks funded by several sources: 67.3% of families had breaks which were funded by local authorities, 10.9% had breaks funded by health authorities, 19.8% of families had breaks they funded themselves, 16.0% of families had breaks funded by other sources including charities and other government sources; 29.4% of families received direct payments to fund short breaks (Welch et al 2011).

Carers UK (2021) compiled a resource which details how carers used their breaks during the pandemic. They found carers used short breaks funding for:

Taking some exercise (e.g. a walk, exercise class, run) (37%)
Completing practical tasks or housework (33%)
Attending to personal medical appointments (e.g. going to the GP / dentist) (26%)
Focusing on wellbeing (e.g. reading a book, time to myself) (26%)
Catching up on sleep (25%)

Roberts & Struckmeyer (2018) US study on the impact of respite programming looked at how carers use respite vouchers.

The purpose of the respite voucher program was to provide temporary help in the home for full-time carers. Most state voucher programs provide services in vouchers of $200 to $400 once every 3 months, based on funding. Carers could hire a person of their choice as the respite provider. Respite services could be provided in the carer’s home or someone else’s home.

Their study highlights that many carers were often paying for outside help on their own prior to finding out about vouchers, and the opportunity to get financial help was seen as a benefit. However, the process of accessing support funding was complicated and time-consuming for many because of the bureaucratic processes involved such as complex paperwork and funding running out. Despite this, carers appreciated the opportunities that vouchers provide. The two study participants accessing respite vouchers in this study used the time to enjoy a hobby and attend to their own medical needs.

What constitutes a good short break

Staff from Wales (Caulfield et al 2021) found that breaks that supported a bespoke, meaningful break experience for the carer and their supported person had the following characteristics:

Breaks align with personal preferences (e.g. the caring dyad can experience a break together or separately);
There was flexible provision (i.e. regular provision balanced with a break ‘as and when needed’);
Carers could plan a break in advance;
There was consistency between break provider/care staff to establish a trusting, caring partnership;
The break was appropriate to the person's circumstances and tailored to their interests, to support meaningful engagement;
Providing the break was sustainable, so the benefit is cumulative.

Funds like Time To Live (2019) are also emphasising the need to challenge what respite funds are traditionally used for and argue for the importance of using the funds in ways that suit carers’ needs. This might mean funds can be used not on physical time away and holidays but to support hobbies and interests that make the carers’ life more fulfilling, like physical exercise facilities and hobby activities (Time To Live, 2021).

As a result, personalised short breaks are finally becoming associated with bespoke, outcome-led approaches to help carers achieve the things that matter most to them and those they support as previously urged by Scottish Government (2008).

Barriers to accessing breaks

Welch’s et al’s (2011) study highlights that problems using short breaks fell into five areas:

resources
processes
information
family factors
child factors.

Some carers, however, were reluctant to use short breaks and were concerned about whether short break providers would cope with their child or provide a suitable service (Welch et al 2011). The report details how carers considered short breaks to be suitable and unsuitable for their families, particularly in terms of issues of staffing, personnel, venues and facilities, systems and structures, care and activities as well as sufficiency of breaks and the fact that some short breaks were not seen as providing a true break for the carer (Welch et al 2011).

What kinds of outcomes matter to carers

Thomas et al (2017) provide a meta review of different outcomes that have been considered in researching carers' wellbeing. It becomes clear from the literature that many of these different outcomes are interrelated in carers’ lives.

Physical health

Physical health studies often explored carers’ physical distress, physical functioning, somatic complaints, perceived or subjective health status, and sleep improvement.

Mental health

Mental health was another commonly researched outcome. The terms depression, anxiety, psychological distress and self-efficacy were commonly used.

Burden, stress and coping

Burden, stress and coping are another common outcome considered by previous research, however they were not always well-defined outcomes.

Satisfaction

Satisfaction with the short break intervention is another key outcome mentioned in the consulted literature (Thomas et al 2017).

Wellbeing and quality of life (Thomas et al 2017)

Besides the general terms of well-being and quality of life, various others were used to describe this outcome. These included social isolation, social support needs, caregiving experience, sleep quality, marital–family relationships, social functioning and ability to perform activities of daily living.

Ability and knowledge

Definitions of this outcome included the carers’ sense of competence or mastery, decision-making confidence, knowledge of the condition of their supported person, information needs and learning new skills (Thomas et al 2017).

The following section considers how these outcomes are impacted by short breaks and respite care.

Measuring outcomes for carers

Seddon & Prendergast (2019) review identify much of the existing research on how short breaks impact carers outcomes:

Carer health and well-being

Seddon et al (2021) have found that although there is some research to suggest that personalised breaks can support positive health outcomes (Washington and Tachman, 2017), including improvements to carer physical health (Wilz and Fink-Heitz, 2008) and mental health, the evidence base could be too limited. Shaw et al’s (2009) systematic review of respite care provision for older people identifies various positive outcomes relating to health and wellbeing, including improved carer morale. Meanwhile, Victor’s (2009) systematic review of UK interventions for carers concludes short breaks lead to improvements in carer emotional well-being, with feelings of normality, freedom, peace of mind and relief, albeit tempered by a sense of anxiety, sadness and guilt.

Studies report improvements in carers’ emotional wellbeing by taking short breaks, having been exhausted and rundown before their break and often citing that they need time to relax away from the demands of the caring role (Laing 2013). Research by O’Connell et al. (2012) however, reports that four-fifths of carers experience lower stress levels after a short break. In contrast, other studies report short breaks deliver only positive physical but not positive emotional outcomes (King and Parsons 2005), whilst others conclude that any positive benefits accruing from a break soon dissipate (McNally 2013).

Increased stress

Alongside the positive health outcomes, research confirms that some carers taking short breaks report feelings of guilt, anxiety, emptiness and loneliness, particularly when the break takes the form of residential respite care (Salin and Åstedt 2007, Roberts & Struckmeyer 2018), as well as sadness at being separated (Victor 2009). Brimblecomb et al. (2018) also argued that overall, respite care doesn’t always lead to positive wellbeing outcomes.

Victor’s (2009) review of 107 UK studies is typical in concluding that although carers showed satisfaction with breaks, and perceive benefits to their emotional wellbeing, there is little robust quantitative evidence of improvements to emotional wellbeing, and in fact several studies show negative effects on carers’ emotional wellbeing. This could be because of feelings of guilt (Tait et al 2017). Jardim and Packenham (2009) also found that a respite care group reported a decrease in burden, but unexpectedly also reported an increase in stress.

The impact of short breaks for carers – a life of their own

For some carers, short breaks afford opportunities to undertake routine domestic chores and mundane tasks, including going shopping and meeting basic self-care needs (such as sleeping and attending their own medical appointments) rather than pursuing outside interests or spending time with friends and family (Greenwood et al 2012, O’Connell et al 2012).

Positive relationships with the supported person

Research confirms that short breaks play a key role in supporting positive caring relationships and they enable carers to continue caring ( Victor 2009, Daly 2012, The Older People’s Commissioner for Wales 2018). Affording much needed space, short breaks enable carers to positively frame their relationship with the supported person, their caring role and their achievements (Roberts & Struckmeyer 2018). Interestingly, following a break, carers report renewed commitment to their caring role.

Choices in caring

There is limited research looking at how short breaks might affect on carer choices, including limits to the caring role. Some studies suggest short breaks play a key role in delaying admission to nursing or residential care (Daly 2012)but there is too little research to draw firm conclusions. For example, Mason et al’s (2007) systematic review, looking at different models of respite care, concludes there is no reliable evidence that short break interventions influence choices about caring, including preventing or delaying entry to nursing or residential care.

Satisfaction in caring

Research concludes that short breaks can contribute to carers’ satisfaction if they offer some type of educational experience and an opportunity to learn from other carers (Seddon &Prendergast, 2019). This can help with carer confidence and a greater sense of overall satisfaction in their caring role. Gitlin et al (2006) also report on a day care service that offers support and education to carers to improve carer confidence in managing complex behaviours. Carers using this short break day care facility reported improved wellbeing, reduction in depressive symptoms and a decreased sense of caring pressure.

In terms of satisfaction with short breaks (Welch et al 2011) highlight that:

carers’ satisfaction is highest regarding the staff involved in providing breaks and lowest regarding the bureaucratic processes involved in accessing short breaks.
Generally, children with additional support needs accessing breaks report positive experiences in terms of activities, relationships and confidence or independence. Interestingly, these themes are also reflected in the aspects of breaks that they did not like.
Sibling’s opinions of short breaks are also generally positive. Siblings want their brothers and sisters to have a safe and enjoyable break and they also report benefits for themselves from having a break, being able to do a wider range of things and receiving more attention from their parents. Siblings also disliked some aspects of short breaks including being worried about their brother or sister while they were away, missing their brother or sister, feeling guilty about enjoying themselves without their brother or sister and missing out on the fun their brother or sister was having.

Collins et al (2014) revealed that short breaks were crucial in helping parents with disabled children continue to provide care and they were used in other ways that addressed the wider consequences of caring. These other uses included reducing social isolation and caring for non-disabled siblings and were facilitated by novel forms of short break provision. Some parents, however, reported that their needs for short breaks had not been met, and this appeared to arise from contested interpretations of what ‘breaks from caring’ means.

What research tells us about the impact of short breaks for carers – the quality of the short break experience

The quality of the short break experience for the supported person is important in determining how carers themselves feel about the experience (Daly 2012, McDonald and Macleod 2016). In particular, carers value the safety of their supported person and the opportunity for meaningful engagement. Indeed, research suggests this lessens carers’ sense of guilt (Stirling et al 2014).

The importance of choice and flexibility

An evaluation of the Scottish Short Breaks Fund projects notes that personalisation and choice, for both the carer and the supported person, are crucial for carers’ outcomes (Shared Care Scotland 2012). The importance of choice in short breaks provision to address varied needs and preferences is also highlighted by Shared Care Scotland (2010). For example, some carers express a wish for a family holiday, rather than the break that is offered.

Employment outcomes

There is a dearth of research exploring the role of personalised short breaks in supporting other aspects of life - enabling carers to enter, keep or re-engage in paid employment, work in a voluntary capacity or complete educational or training programmes. Allied to this, the potential to yield financial wellbeing outcomes is not considered, for individual carers or at a societal level as reflected in employee retention rates and productivity levels.

Research shows a positive relationship between using support services by the care-recipient and carers’ employment outcomes and thus the potential to reduce individual, employer and societal costs of negative employment outcomes (Brimblecomb et al 2018). This is the case using within-country studies (e.g. Scharlach, 2007 in the US; Pickard et al., 2015 in England). These studies find that the provision of formal care support for the person with care needs is associated with a higher probability of being in employment, particularly for women. A greater effect is seen for people providing care at higher intensity which is unsurprising in the context of the relationship between higher-intensity caring and negative employment outcomes.

Thus, carers feel that provision of services for the care-recipient is important in enabling them to remain in employment and the lack of services is a barrier to being in employment (Brimblecomb et al 2018).

Duration of short breaks

Both duration and frequency of respite breaks are relevant when assessing the importance for the carer and their supported person, but although carers highly value such services, this does not systematically translate into better outcomes for carers (Brimblecomb et al 2018). Both reviews of cost-effectiveness identified in the Parker et al. (2010) meta-review find no evidence of cost effectiveness for respite care.

Equally, as short breaks are by definition services provided for a short length of time they may only be sufficient to provide temporary relief rather than any substantive improvements before returning to an often very demanding caring situation and the same intensity of care hours, a key factor in poorer mental health (Brimblecomb et al 2018).

Making short breaks work for carers - what’s needed

Mansell at Wilson (2014) found that most carers reported that their respite needs were not being met. Unmet needs were hampered by the lack of information regarding criteria for access to respite. Discrepancies were clear between professionals and carers on a shared definition of respite care. Carers were unsure of exactly which activities made up respite care and for whom the service was being provided.

Teo, Kennedy-Behr & Lowe (2018) conclude that better communication and collaboration between service providers and users, more targeted training of workers, and embracing a person-centred and family-centred approach to respite services are needed. In addition, clearer definition and communication of respite services are required to best support families of children with significant disability in their home.

Different carers may need different interventions or combinations of interventions depending on the level and type of care needed by the care recipient and carers’ broader circumstances, such as age or economic status (Brimblecomb et al 2018). Furthermore, the nature of support needed is likely to change as care needs and carers’ personal circumstances change. Many studies, reviews and reports conclude that a combination or ‘multiple choice’ of interventions may be most effective in supporting carers and helping to meet the diverse needs of carers and people with care needs (Brimblecomb et al 2018; Seddon &Prendergast, 2019).

Thomas et al (2017) conducted a quantitative meta review of outcomes for carers. Their findings echo many of those discussed above. They also include the perspective of two carers on the many studies about carers’ short breaks. Interestingly, the two carers highlight some key issues with many existing interventions:

Carers of people with different conditions experience different caring experiences and trajectories. Thus, what might be useful for one sort of carer might not be useful for another. Similarly, what might be effective at one stage in the trajectory might not be effective at another stage. This underlined the difficulty, as they saw it, of knowing what a true ‘control’ carer or condition might be in a controlled research design.
Variations in caring situations and across carers made it difficult to see that a single intervention could be the ‘answer’ in supporting carers. Rather, as one put it, ‘because of the complexities of the situations, there is unlikely to be a one size fits all that will be right at any given time’. As a result, she felt that any opportunity to engage with carers and the cared-for person might ‘just press the right supportive button at that moment’, and hence a ‘pick and mix’ approach, whereby various support options were on offer, would be the ideal.
the interventions that the high-quality reviews had suggested might have a positive effect on carers, but the carers pointed out that what was actually available to carers was limited and incomplete, and that although education and training for the carer might have a part to play, this was no substitute for ‘direct intervention on the carer’s own behalf’. They also raised the value to carers of standard services, including respite, that were provided to the person they cared for.