The impact of social care services on carers’ quality of life

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Stacey RandUniversity of Kent, UK

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Florin VadeanUniversity of Kent, UK

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Julien ForderUniversity of Kent, UK

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Unpaid care is an important part of long-term care systems. It is increasingly recognised that carers have their own health and well-being needs. Carer-specific interventions, as well as support for the care-recipient, may enable carers to maintain their own health and well-being alongside caring. This study seeks to establish whether and how community-based care services affect carers’ quality of life. The Adult Social Care Outcomes Toolkit for Carers was used to capture carers’ social care-related quality of life through qualitative interviews and a survey of carers in England in order to provide insights into the impact of community-based care services on carers’ quality of life outcomes.

Abstract

Unpaid care is an important part of long-term care systems. It is increasingly recognised that carers have their own health and well-being needs. Carer-specific interventions, as well as support for the care-recipient, may enable carers to maintain their own health and well-being alongside caring. This study seeks to establish whether and how community-based care services affect carers’ quality of life. The Adult Social Care Outcomes Toolkit for Carers was used to capture carers’ social care-related quality of life through qualitative interviews and a survey of carers in England in order to provide insights into the impact of community-based care services on carers’ quality of life outcomes.

Introduction

Unpaid care provided by the family and friends of adults living with long-term health conditions, disability or age-related impairments comprises an estimated 80 per cent of all long-term care provided across Europe (Hoffmann and Rodrigues, 2010). The decline in intergenerational co-residency, fertility rates and family size, as well as women’s increased participation in the labour market, are projected to contribute to a shortfall in informal care availability over the next two decades as demand for long-term care increases with ageing populations and increased multi-morbidity (Pickard, 2015; Kingston et al, 2018). In light of this challenge and in recognition of the potential negative effects of caring on carers’ health and well-being, policy developments in the UK, Europe and beyond have sought to establish legal entitlements and support for carers, even if there is considerable variation in type, availability and eligibility by country (Courtin et al, 2014; Brimblecombe et al, 2018a). Support for carers includes, for example, formal care services for the person with care needs (‘replacement care’), cash benefits, flexible working or paid care leave, psychological therapy, or training interventions and support groups. There is emerging evidence of the effectiveness of flexible support and multidimensional interventions that adapt to the specific needs of the care-recipient and the carer’s circumstances (Brimblecombe et al, 2018a).

There are competing perspectives of the relationship between informal care and formal long-term care services (also known as social care in the UK, which refers to services for people with needs related to illness, disability or older age, for example, residential care and home care). Carers may be viewed as the default source of care (resources), as partners enabled and encouraged by social care services (co-workers) and/or as individuals with support needs in their own right (co-clients) (Twigg, 1989). The perspective of carers as co-clients has been especially informed by the evidence that caring may have a negative impact on health (Brouwer et al, 2004; Van Houtven and Norton, 2004; Schmitz and Westphal, 2015), life satisfaction (Van den Berg et al, 2014) and ability to maintain everyday activities, for example, employment (King and Pickard, 2013). The policy strategy in England has primarily sought to position carers on an equal footing with care-recipients with their own needs (co-clients), yet also to recognise and promote the concept of partnership between carers and care services (co-workers) (Department of Health and Social Care, 2018). The perspective of carers as co-clients is also reflected in the Care Act 2014, which places a responsibility on local authorities to address the outcome needs of carers (for example, to maintain social relationships, leisure activities and employment) as clients in their own right.

The Carers Action Plan in England highlights the importance of carer-specific support. In England, carer-specific services are commissioned by local authorities and may be delivered through local carers’ or other voluntary organisations (Department of Health and Social Care, 2018). Even though carers in England have a legal right to assessment and support for eligible needs (Care Act 2014), only an estimated 6 per cent of carers receive support from local authority adult social services (National Audit Office, 2018). Furthermore, the evidence of the effectiveness of carer-specific interventions to improve carers’ quality of life (QoL) is relatively weak due to methodological constraints, specifically, in terms of suitable outcome measures (Pickard, 2004). Studies tend to use carer-specific or generic measures to capture burden/strain, health-related QoL or psychological outcomes; however, these may not be sensitive to the effect of social care interventions. The development of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer) seeks to address this by measuring aspects of QoL valued by carers that may be improved by social care services, or social care-related QoL (SCRQoL) (see Table 1) (Rand et al, 2012; 2015). The tool was developed in England and has been translated for use in (cost-)effectiveness studies or carers’ needs assessment in Finland, Austria and Japan (Trukeschitz et al, 2018; Linnosmaa et al, 2019; Yamaguchi and Rand, 2019).

Table 1:

ASCOT-Carer attributes

Attribute Description
Occupation (doing things I value and enjoy) Being sufficiently occupied in a range of meaningful, enjoyable activities, whether formal employment, unpaid work, caring for others or leisure activities
Control over daily life Choosing what to do and when to do it, and having control over their daily life and activities
Self-care Feeling able to look after oneself in terms of eating well and getting enough sleep
Personal safety Feeling safe and secure, where concerns about safety can include fear of abuse or other physical harm or accidents, which may arise as a result of caring
Social participation Being content with their social situation, where social situation includes the sustenance of meaningful relationships with friends and family, as well as feeling involved and part of their community
Space and time to be yourself Having space and time in everyday life – enough time away from caring to have a life of their own outside of the caring role
Feeling supported and encouraged Feeling encouraged and supported by professionals, care workers and others in their role as a carer

The ASCOT-Carer also offers a way of capturing the wider benefit of social care services on carers. In health care, there is increasing awareness of the ‘spillover effects’ in (economic) evaluation studies of interventions on carers and (more broadly) families and households, alongside the effect on patients (Basu and Meltzer, 2005; Goodrich et al, 2012; Hoefman et al, 2013; Al-Janabi et al, 2016). It has been argued that considering spillover effects may have unintended effects on access to health care and may not adequately account for those individuals or groups who would bear the opportunity cost (McCabe, 2019). Despite these potential pitfalls, there are compelling arguments for the inclusion of spillover effects in considering the wider societal impact of health care, if applied with appropriate caution, to address the identified issues of equitable access to health care and potential displacement (Brouwer, 2019). Indeed, these issues are already part of the growing literature on how to estimate spillover effects to take into account the displacement of funding one intervention over another (Al-Janabi et al, 2016) and avoiding the reinforcement of existing social inequality – especially with regard to the absence of family or household members (Basu and Meltzer, 2005). The discussion of spillover effects in health care also applies to social care, with the added complexity that carers are viewed as co-clients (patients) in their own right.

In conceptualising spillover effects, there are two aspects: (1) the effect of caring for someone (the caregiving effect); and (2) the effect of caring about someone (the family effect) (Bobinac et al, 2010; 2011; Brouwer, 2006). The latter may apply to households and families – regardless of caring responsibilities – whereas the former only applies in cases where someone is providing (informal) care to the care-recipient. These concepts may also be applied to the impact of social care services on carers’ QoL. Unlike in health care, where it has been argued that there is a need to disentangle the caregiving from the family effect in order to avoid overestimating the intervention effect (Bobinac et al, 2011), it may be argued that the family effect is within the remit of social care interventions, especially in psychosocial interventions (for example, carer support worker).

Interventions for the care-recipient (for example, home care) may reduce time spent on caring tasks, either overall or for emotionally burdensome tasks (for example, personal care), thereby limiting an adverse caregiving effect on QoL. Indeed, this is supported by evidence of substitution between the amount of professional care and informal care received by older adults (Bonsang, 2009), which shows that higher care-recipient QoL is associated with reduced time spent on care tasks and increased carer QoL (Dixon et al, 2006). By contrast, the family effect captures the way in which someone’s QoL may influence the QoL of the people around them because they care about the person. Here, the impact of social care services may be through the impact on the care-recipient (for example, home care may improve the care-recipient’s QoL and, thereby, also the carer’s QoL) via the mutual dependence in utility between the cared-for person and their carer (Becker, 1981; Van Houtven and Norton, 2004; Rand et al, 2017). The impact of social care on carers’ QoL through the family effect may also be a direct effect of services that mediate the carer’s emotional response to caring about the care-recipient. This may be an intended direct effect of an intervention (for example, carers’ support workers, who encourage carers to self-care) or an indirect effect (for example, emotional support from domiciliary care workers).

In this study, we sought to establish whether and how community-based social care services affect carers’ QoL in qualitative interviews and a survey of carers in England using the Adult Social Care Outcomes Toolkit for carers interview (ASCOT-Carer INT4). The ASCOT-Carer INT4 is a measure of carers’ social care-related QoL that uses a novel counterfactual self-estimation method to estimate the effect of services on carers’ QoL (Rand et al, 2012, 2015). This counterfactual self-estimation method was initially developed and tested with the service user (care-recipient) version of the ASCOT (Malley et al, 2019). The aim of the study was to determine whether and how community-based social care services have spillover effects on carers’ QoL as a way of understanding the wider impact of social care.

Methods

Qualitative interviews

The aim of identifying whether and how social care services affect carers’ SCRQoL was addressed through a secondary analysis of qualitative interviews conducted as part of the Identifying the Impact of Adult Social Care (IIASC) study. These qualitative interviews were originally conducted to inform the development of the ASCOT-Carer interview (INT4) questionnaire, which is reported elsewhere (Rand et al, 2012). The study inclusion criteria were: adult carers aged 18 years or over, who supported someone with a physical disability or sensory impairment, learning disability or mental health condition who was in receipt of fully or partly publicly funded social care services. Three local authorities in England and two carers’ organisations within those areas supported recruitment. The local authorities distributed a letter of invitation to eligible carers identified from their social care records. The two carers’ organisations advertised the study in their newsletters. In response, 37 carers indicated their interest. Of those, 31 carers completed an interview of 40 to 70 minutes’ duration. The interviews were conducted between April and July 2012 by one researcher (Stacey Rand) and took place at the participant’s home or another convenient location. Two interviews were excluded from the analysis due to a poor-quality audio recording with incomplete transcription (n = 1) or the length of time since the carer had been in contact with the care-recipient (n = 1).

The interviews were transcribed and imported into NVivo for analysis using the framework approach (Ritchie and Lewis, 2003). This involves familiarisation with the interview by listening to the audio file, reading transcripts and reviewing notes. The data were initially coded using a priori concepts (the ASCOT-Carer SCRQoL attributes and the effect of services on carers’ QoL) and emerging themes (barriers to accessing social care and the meaning and value of the caring role). This analysis is reported elsewhere (Rand and Malley, 2014). Here, we present a secondary data analysis that focuses only on the effect of social care on carers’ SCRQoL using the analytical framework outlined in Box 1.

Analytical framework

Positive impact of services on carers’ SCRQoL

  • By reducing the time spent on care-related tasks

  • By motivation and encouragement to focus on self-care, access support and reappraise their role/priorities

  • By alleviating subjective burden

No impact of services on carers’ SCRQoL

  • -No underlying social care need (that is, at the ‘ideal state’ due to factors other than social care)

  • -Mismatch between carer’s need(s) and the social care intervention

  • -Lack of time, motivation or energy to engage with services*

  • -Limited formal social care support – insufficient amount or quality

Negative impact of services on carers’ SCRQoL

  • -By increasing the time spent on care-related tasks*

  • -By overlooking the carer’s own needs and/or undermining their role*

  • -By contributing to subjective burden*

Note: * Identified through the analysis. (The other concepts were specified a priori.)

Survey of carers

The study aim of identifying whether and how community-based social care services affect carers’ QoL was also addressed by analysing data collected in a survey of service users and carers in 22 English local authorities. The study is reported elsewhere (Forder et al, 2016). Here, we focus on the data collected using the ASCOT-Carer INT4. The questionnaire uses a counterfactual self-estimation method to enable carers to self-report an estimate of the effect of social care services on QoL (Rand et al, 2012).

Study design and sample

Service users were identified from a non-stratified random sample of people in receipt of fully or partly publicly funded support primarily due to a physical disability, mental health problem or intellectual disability, and/or from respondents to the 2012/13 Adult Social Care Survey (ASCS) who had agreed to be contacted about further research. Interviews were completed between June 2013 and March 2014 (n = 990). All participants were asked whether they received help and who provided that help in relation to a number of activities of daily living and instrumental activities of daily living (I/ADLs). If respondents received help from family or friends, they were asked to pass a study information pack to the carer who was reported to spend the most hours per week on care-related tasks by the service user.

A total of 387 carers were recruited and completed an interview. The interview was completed using the same mode of administration as with the service user (that is, by telephone or face to face). In the analysis presented here, we only consider the carers of people with physical disabilities or mental health conditions (n = 316) because the interviews with adults with intellectual disabilities did not collect the detailed service use information for the calculation of cost-weighted intensity.

Questionnaire

The survey collected data on the carer (age, sex, educational level, employment status, self-rated health, mobility) and aspects of the caring situation (duration of caring, suitability of home design for caring). The carer’s wider social support was captured by a rating of involvement with regular social groups and the frequency of contact by telephone with friends and family. The potential availability of social care services for the carer’s own needs was indicated by asking whether the carer had ever completed a carer’s assessment. Items asking whether the household was in receipt of means-tested benefits and to self-rate the household financial situation captured the financial resources available to the household.

The questionnaire also included the ASCOT-Carer INT4.1 This instrument may be used to estimate three measures of carer SCRQoL (Rand et al, 2012, 2015). First, there is the ASCOT-Carer SCRQoL current. This is the carers’ self-rated SCRQoL for each of the seven ASCOT-Carer attributes (see Table 1). Each attribute may be rated as the ideal state, no needs, some needs or high-level needs.

Second, there is ASCOT-Carer SCRQoL expected. The ASCOT-Carer INT4 uses a counterfactual self-estimation method, which has been adapted from the ASCOT INT4 for service users (Malley et al, 2019). The counterfactual is an estimate of the carer’s SCRQoL in the absence of services (Netten et al, 2012; Rand et al, 2012).The respondent was then asked whether services affected each SCRQoL attribute. If respondents answered ‘yes’ or were unsure, they were also asked to self-estimate their counterfactual QoL (see Box 2), that is, to imagine what life would be like without social care support while holding other factors constant. In this study, respondents were asked to self-estimate their counterfactual based on all social care services accessed by the care-recipient and carer. The same four response levels were applied as for the rating of ASCOT-Carer SCRQoL current (that is, ideal state, no needs, some needs and high-level needs) (see Box 2). Where the respondent said that services did not have an effect, their ASCOT-Carer SCRQoL current score was applied as the ASCOT-Carer SCRQoL expected score.

Third, the ASCOT-Carer SCRQoL gain is an estimate of the effect of social care services on QoL calculated by subtracting the ASCOT-Carer expected from the current SCRQoL score. Utility weights were applied to calculate an overall ASCOT-Carer SCRQoL gain index score (Batchelder et al, 2018). The larger the score (up to a maximum of 1), the larger the impact of services on the carer’s QoL – with a score of 1 representing an impact where services improve SCRQoL from the worst possible (high-level needs) to the best possible (ideal state) for all seven ASCOT-Carer attributes.

ASCOT-Carer INT4 counterfactual self-estimation

Occupation (‘doing things I value and enjoy’)

Q. Does the support that you and your husband, John, get from the day centre affect how you spend your time?

  • Yes

  • No

  • Don’t know

Q. Imagine that you and your husband, John, did not have the support from the day centre that you do now, and no other help stepped in. In that situation, which of the following would best describe how you would spend your time?

  • I would be able to spend my time as I want, doing things I value or enjoy (ideal state)

  • I would be able to do enough of the things I value or enjoy with my time (no needs)

  • I would do some of the things I value or enjoy with my time but not enough (some needs)

  • I wouldn’t do anything I value or enjoy with my time (high-level needs)

The carer data were linked to the service user data. In this study, we considered the service user’s age, sex, primary reason for support and severity of social care need indicated by self-report of how many of eight I/ADLs were completed alone with difficulty or were unable to be completed without help.2 The analysis also used a variable to capture whether the care-recipient had received help to answer one or more of the questions in the ASCOT INT4 (service user version).

Intensity of service use by the care-recipient was measured as cost-weighted utilisation per week. This was calculated based on self-reported use of the following services: home care, day centres, meals services, social work support and equipment and home adaptations. The calculation of weekly cost-weighted utilisation considered all social care services, funded publicly or privately. To estimate cost-weighted utilisation, England-mean (gross) unit cost data were used. The cost-weighted utilisation variable had the usual high degree of rightward skew. To this end, we censored cost-weighted utilisation values of greater than £1,500 per week (more than twice the gross cost of residential care) to £1,500. Even with censoring (n = 10 [3.3 per cent]), cost-weighted utilisation was highly skewed. We therefore used a log-transformed value, which had a distribution closer to normal.

Statistical analysis

All analyses were performed using Stata version 13. Descriptive statistics are reported for the sample characteristics, the ASCOT-Carer SCRQoL gain index score (a measure of the impact of social care services on carers’ SCRQoL) and also the rating of the seven ASCOT-Carer attributes in terms of current SCRQoL and expected SCRQoL. Multiple regression analysis using ordinary least squares (OLS) was used to assess the construct validity of the ASCOT-Carer SCRQoL gain index score. Social care services are designed to address the QoL needs of service users and carers. Therefore, the impact of services should be related to the intensity of service use. To test this hypothesis, the regression analysis included the service user’s cost-weighted utilisation of social care services as an indicator of the intensity of service use. Receipt of carer-specific services was not included separately in the analysis due to the small numbers in the sample. Instead, we used an item that asked carers to self-report whether they had had a carer’s assessment as an indicator of carer-specific support. Individual characteristics of the carer and care-recipient were also considered.

By contrast to the ASCOT-Carer SCRQoL gain, the ASCOT-Carer SCRQoL current may additionally be associated with factors not related to social care service inputs, specifically: the individual characteristics of the carer (for example, age, sex, health, mobility, financial situation, education or employment, and social contact); the individual characteristics of the care-recipient (for example, age and sex) and their social care needs (for example, I/ADLs with difficulty and mental health conditions); and the caregiving context (for example, caregiving intensity or duration, and the suitability of home design for caring). The mode of interview administration was also considered because it has been found that the survey administration mode is related to the rating of current SCRQoL (Rand et al, 2015). Although included as covariates in the estimation, all these factors were expected to be unrelated to the ASCOT-Carer SCRQoL gain.

Ethics

Ethical approval was obtained from the Social Care Research Ethics Committee in England (Ref: 12/IEC08/0009, 12/IEC08/0049).

Results

Qualitative interviews

The sample characteristics are outlined in Table 2. The sample included carers of people with diverse support needs, including physical disability (44 per cent), intellectual disability (20 per cent), mental health problem (17 per cent), dementia (17 per cent) and sensory impairment (2 per cent). The majority were female (83 per cent) and supported a spouse/partner (41 per cent) or an adult child (38 per cent). All were aged 45 years or older.

Table 2:

Qualitative interview sample characteristics

Frequency
Gender of carer
 Male 5
 Female 24
Age of carer
 45–54 years 6
 55–64 years 8
 65–74 years 9
 75 years or over 6
Relationship of care-recipient to carer
 Spouse/partner 12
 Child 11
 Parent or grandparent 4
 Sibling 2
Co-resident with care-recipient
 Lives with care-recipient 22
 Lives somewhere else 7
Primary support reason for care-recipient
 Physical disability or impairment 13
 Intellectual disability (autism spectrum disorder) 6 (3)
 Dementia 5
 Mental health problem 5
 Sensory impairment 1
Services used by the carer in the past 12 months
 Carers’ organisation or group 26
 Information and advice 21
 Training for carers 5
 Counselling or someone to talk to in confidence 2
 Support to stay in employment 1
Services used by the care-recipient in the past 12 months
 Home care/personal assistant 16
 Day centres/activities 14
 Equipment or home adaptations 13
 Residential replacement care or breaks 8
 Lifeline alarm 5
 Supported living (housing with support worker on-site) 2
 Meals services 2

Note: n = 29.

In responding to the draft ASCOT-Carer INT4 questionnaire, the carers were able to construct an internal representation of what their lives would be like without social care services and to rate their QoL by reference to that. In ‘thinking aloud’ as they responded to these questions (Willis, 2005), carers articulated whether and how their experience of social care services affected their QoL in relation to each ASCOT-Carer attribute.

Positive impact of services

The carers were able to judge and describe whether or not social care support had a positive effect for all of the aspects of QoL included in the ASCOT-Carer INT4 (see Table 3).

Table 3:

Examples of how care support affects ASCOT-Carer SCRQoL attributes

Attribute Examples of how social care services were perceived to have an effect on QoL
Occupation “Yes they do because without [services], I would be quite tired. I can go off on a Thursday knowing he’s cared for. I have my mobile on in case of any emergencies obviously. And I go out and have lunch and do just what I want to do.” CR17, female carer for her spouse/partner, day centre and home care
Control over daily life “Well if I didn’t have some respite care, for example, I would have a lot less control over what I was able to do beyond here. If my parents didn’t get any [personal budget] payments at all, then I would be tied very much to being here and looking after them. So that would also give me less control, wouldn’t it?” CR2, female carer for her parents, personal budget, respite care, home care
Self-care “If he wasn’t away those couple of days each week, it would put extra pressure on me and I probably then wouldn’t want to even deal with myself [because of depression]. So, yes … I just wouldn’t have the time to do the other little bits and pieces that allow me to do what I do for myself then.” CR28, female carer for her spouse/partner, personal budget, day centre
Personal safety “I suppose one of the most important things is probably the carers going in. The other things I suppose are the apparatus that she’s got in place because she is heavy and when she falls over, and she has had a lot of falls, my sister and I can’t even lift her. We have to get the ambulances out … ‘cause she’s a dead weight, so I suppose having the right apparatus and the people [around help me feel safe], yeah.” CR12, female carer for her mother, home care and equipment/adaptations
Social participation “I’d have very little social contact at all if I didn’t have the [carer group] and the girls [home care] and all that…. I’ve met other carers that go to [the carer group] once a month. If I walk down the town, one of them will recognise me and say ‘hello’ and I can have a little chat and it’s nice.” CR21, female carer for her spouse/partner, home care and carers’ support group
Space and time to be yourself “You’re always thinking, yeah. At the weekends, he’s got a lot of energy. He has to be out every day, so I’ve got to find all the time things for him to do. If he’s in the respite, which is absolutely marvellous, I don’t have to…. Then he has to have his meals at 12 o’clock, 5 o’clock, 10 o’clock and set things to eat, so I’ve always to be certain I’ve got the right things in. When he’s not here, it’s a relief to me.” CR4, female carer for her adult son, respite care
Feeling supported and encouraged “Well, I have to say that the carers were very kind to me. They could see sometimes that I was, you know, struggling and upset. And some of them were very good and maybe put an arm round me.” CR10, female carer for her sister, home care
Where a positive impact of services was reported, carers sometimes spoke of how services replaced or reduced their care-related tasks. This enabled the carer to have more time or energy to meet their own needs: “I used to spend all my time getting him out of bed and showering him, dressing him. It took a lot of my time up. I’ve got that time to spare now … I can go out in the garden, deadhead the roses, and whatever I want to do” (CR19, Occupation). Some carers spoke of how services motivated them to self-care or to access other sources of formal support. In some cases, the support also facilitated a shift in identity and self-perception from ‘just a relative’ to a ‘carer’. This reappraisal of self-understanding gave the respondents permission to seek help. In some cases, it also changed how the carer prioritised their own needs:

“Sometimes, things happen and you forget about yourself and you end up not going to the doctor. But [carer support worker] would remind me about that – ‘Say now, come on, let’s think about you because if you’re not well, how can you look after [care-recipient]?’ And it’s right, you’ve got to sometimes think about yourself.”

(CR18, Self-care)
Others spoke of the way in which services alleviated subjective burden in a way that improved their QoL. For example, one carer described how she was able to re-establish a better pattern of sleep after home care alleviated the physical and emotional stress of the situation:

“I just think back to the scenario when Mum was so ill. That was just absolute hell, it really was. That was the worst month of my life. It was the pressure. It takes off your shoulders to know that somebody else is going in there and doing what she needs when they’re supposed to, and you can rely on them.”

(CR12, Self-care)

No impact of services

All of the respondents reported at least one attribute where formal services did not affect their QoL. At least one carer reported ‘no impact’ of services for each of the ASCOT-Carer attributes. The rationale for the lack of impact of services was reported in some cases by carers whose SCRQoL was at the ‘ideal state’, regardless of social care services: “I sleep well. He sleeps well. We eat quite well – although no, I don’t think it’s anything to do with the support services” (CR4, Self-care). In other cases, the carer reported ‘no needs’ (“it’s fine”) but were not motivated to proactively seek improvement. Some carers reported that they had some degree of unmet social care-related need (that is, some needs, high-level needs) yet described how a lack of time or energy made it difficult to access support. This was even when the carer recognised that services could potentially improve their QoL:

“Some people like doing that type of thing [social events organised by carers’ group]. They have a meeting once a month but I’ve had to drop out of that because of doing the transport for the hospital. I do know they do have these things. It’s just something that I don’t have the time to join in. I’m so tired with his treatment.”

(CR15, Social participation)

Some carers reported a mismatch between SCRQoL needs and available interventions. For example, a carer (CR23) who accessed events and day trips organised by a carers’ organisation noted that these services did not affect her ability to sleep without disturbance or anxiety (Self-care). Sometimes, it was recognised that the mismatch between a carer’s needs and the service(s) used could be addressed by accessing a different type of service that would be more effective. However, this was not always feasible in practice. Barriers included limited availability of other services and/or carers’ preferences or attitudes towards services or the caregiving role: “It’s very difficult. You have a week [of respite care]. Then you have another week. And then that’s it. It’s probably my fault because I’m reluctant to have somebody come in and care for [care-recipient] in the home” (CR22, Time and space to be myself).

Some reported no effect of services due to the low intensity of the intervention or quality-related issues. For example, one carer described how the absence of proactive engagement from a carers’ organisation meant that it did not affect how supported and encouraged he felt in his caring role: “Like I said, there’s no contact with them. You get your newsletter. Unless you phone them, there’s no contact” (CR23, Feeling supported and encouraged).

Negative impact of services

While the ASCOT-Carer was originally conceived as a measure of the positive effect of social care, one respondent reported that services had a negative impact on QoL:

“Well, they come in to help [care-recipient], that’s great. But it’s a lot of work when they go away. They don’t really clean up after them or anything like that. So, actually, they’re all right for [care-recipient], you know, for his needs. But they actually make more work for me.”

(CR14, Occupation)

As illustrated by this example, the negative effects may be conceptualised as the opposite of the positive impacts. In this case, rather than services substituting for informal care and alleviating the burden of care-related tasks, the service actually added to the carer’s care-related tasks. This also contributed to the carer’s sense of feeling overlooked and undervalued in her role as a carer.

Survey of carers

The sample characteristics are shown in Table 4. The sample has a lower proportion of women (54.1 per cent), adults aged 18–64 years (53.8 per cent) and carers in paid employment (26.9 per cent) than the population estimate of English carers (women 60 per cent; 18–64 years 75 per cent; in paid employment 46 per cent), as well as a higher proportion providing more than 35 hours of care per week (59.8 per cent, compared to the 30 per cent population estimate) (NHS Digital, 2010). This may reflect the study methodology of recruiting carers via adults who used publicly funded social care services. Indeed, the older age profile and more intensive caregiving in the study sample is comparable to the 2012/13 survey sample of adult carers known to English local authority adult social services departments (≥ 65 years, 42.6 per cent; ≥ 35 hours/week, 59.8 per cent) (NHS Digital, 2013).

Table 4:

Descriptive statistics

Mean* (std dev, min to max)
ASCOT-Carer SCRQoL .727 (.225, 0 to .999)
ASCOT-Carer SCRQoL expected .492 (.300, 0 to .999)
ASCOT-Carer SCRQoL gain .238 (.227, –.243 to .987)
Cost-weighted service utilisation (censored,** log transform) 4.420 (1.603, 0 to 7.314)
Log of scale of care-recipient I/ADLs 2.256 (.720, 0 to 3.219)
Frequency (%)*
Carer characteristics
 Aged ≥ 65 years 146 (46.2%)
 Male 145 (45.9%)
 Higher education (university or professional qualification) 86 (27.2%)
 Household claims means-tested benefits 107 (33.9%)
 In paid employment 85 (26.9%)
 Financial situation: manage very well 36 (11.5%)
 Financial situation: manage well 79 (25.2%)
 Financial situation: no difficulty 137 (43.6%)
 Financial situation: some difficulty 44 (14.0%)
 Financial situation: severe difficulty 18 (5.7%)
 Social contact (telephone): most days 153 (48.4%)
 Social contact (telephone): once or twice a week 114 (36.1%)
 Social contact (telephone): monthly or less 49 (15.5%)
 Social contact (meet up): most days 53 (16.8%)
 Social contact (meet up): once or twice a week 143 (45.2%)
 Social contact (meet up): monthly or less 120 (38.0%)
 Involved in social groups 143 (45.3%)
 Had a carer’s assessment 80 (25.4%)
 Care duration: less than five years 94 (29.8%)
 Care duration: 5 to 20 years 160 (50.6%)
 Care duration: more than 20 years 62 (19.6%)
 Hours of care per week: less than 10 hours 49 (15.5%)
 Hours of care per week: 10 to 34 hours 78 (24.7%)
 Hours of care per week: 35 to 49 hours 47 (14.9%)
 Hours of care per week: 50 hours or more 142 (44.9%)
 Home design: meets most, some or no needs*** 110 (34.9%)
 Mobility: no problems 206 (65.2%)
 Health: good or very good 145 (45.9%)
 Health: fair 116 (36.7%)
 Health: bad or very bad 55 (17.4%)
Care-recipient characteristics
 Aged ≥ 65 years 184 (58.2%)
 Male 132 (41.8%)
 Help to complete one or more ASCOT-Carer questions 77 24.4%)
 Primary support reason: mental health 75 (23.7%)
Interview administration
 Interview by telephone 51 (16.1%)

Notes: n = 316. * Missing values: Carer SCRQoL (n = 3); Carer SCRQoL expected (n = 4); Carer SCRQoL gain (n = 5); cost-weighted utilisation (n = 14); spatial lag (n = 15); log scale of care-recipient I/ADLs (n = 1); household finances (n = 2); had a carer’s assessment (n = 1); home design (n = 1). ** With an upper limit of £1,500. *** Reference categories: home design: meets all needs of the carer; mobility: some or severe problems.

Of the study sample, 67.4 per cent reported that they did not receive any carer-specific support, of which just over 10 per cent (n = 35) received only information and advice. This is considerably lower than the estimate of carers in England who have not had a carer’s assessment (94 per cent) or have been assessed but did not receive any services as a result (2 per cent) (NHS Digital, 2010). Again, this is likely due to the study methodology and the focus on carers of people who were using publicly funded services. The most commonly reported types of support were carers’ support group (n = 48, 15.2 per cent) and counselling (n = 26, 8.3 per cent), with only a small number of carers who had received training (n = 4) or support to stay in employment (n = 2). Just under a third of the sample (n = 102, 32.5 per cent) reported that they had accessed a short-term break in the past 12 months. With regard to social care service use by the care-recipient, there were 11 cases (3.5 per cent) where the only service that the care-recipient used at the time of interview was home adaptations or equipment. Other services accessed included: domiciliary care (n = 193, 61.1 per cent); day centre (n = 74, 23.4 per cent); social worker support (n = 66, 20.9 per cent); support from a voluntary helper (n = 10, 3.2 per cent); and meals services (n = 7, 9.7 per cent).

The distributions of the ASCOT-Carer SCRQoL scores for current, expected (without services) and gain (effect of services) are shown in Figure 1. These represent the preference-weighted scores, whereby each outcome state is converted into a score that reflects its relative value, based on the views of the general population (Batchelder et al, 2018). For current and expected SCRQoL, the scores range from 0 (worst possible) to 1 (best possible) QoL. The distribution of the ASCOT-Carer SCRQoL current scores were negatively skewed (mean = 0.73, std dev = 0.23) with a ceiling effect at the upper end of the scale. The ASCOT-Carer expected scores were leptokurtic with a tri-modal distribution with peaks at the upper and lower end of the scale, as well as around the mean (0.49, std dev = 0.30). The ASCOT-Carer SCRQoL gain score may be negative, which reflects instances where services have a negative impact on QoL, up to a total of 1, which represents cases where services improve QoL from the worst to the best possible QoL. In this study, the ASCOT-Carer gain scores were positively skewed with a floor effect (mean = 0.24, std dev = 0.23, range = –.24 to .99).

Figure 1:
Figure 1:

Kernel density estimate

Citation: International Journal of Care and Caring 4, 2; 10.1332/239788219X15718896111445

The ratings of current and expected SCRQoL for each ASCOT-Carer attribute are shown in Table 5. Wilcoxon signed-rank tests indicated that expected SCRQoL was significantly lower than the current SCRQoL for the seven attributes (p < 0.001), which indicates that services had an effect on all SCRQoL attributes. Between 45 per cent (Occupation) and 65 per cent (Personal safety) of the sample reported that services had no impact on QoL for each ASCOT-Carer attribute. Of those who reported no effect, carers who reported high-level needs are disproportionately represented, for example, 22 of the 24 carers who reported high-level needs for Occupation reported no effect of services on their quality of life. By contrast, fewer than half of the 68 carers who reported the ideal state of Occupation reported that services had no effect on SCRQoL. In all cases where carers reported high-level needs and also that services affected SCRQoL, expected SCRQoL was rated at a higher QoL state than the current SCRQoL state. This results in a negative ASCOT-Carer SCRQoL gain score (that is, services have a negative effect on QoL).

Table 5:

ASCOT-Carer SCRQoL rating by attribute

ASCOT-Carer attribute ASCOT-Carer INT4 SCRQoL current N (%)* ASCOT-Carer INT4 SCRQoL expected N (%)** Wilcoxon signed-rank test z (p value) No self-estimated impact of services N (%) No self-estimated impact of services, current SCRQoL N (%)
Occupation (‘doing things I value and enjoy’) 12.43 (< 0.001) 142 (45.1%)
Ideal state 68 (21.5%) 30 (9.5%) 29 (20.4%)
No needs 93 (29.4%) 49 (15.5%) 38 (26.8%)
Some needs 131 (41.5%) 106 (33.7%) 53 (37.3%)
High-level needs 24 (7.6%) 130 (41.3%) 22 (15.5%)
Control over daily life 11.95 (< 0.001) 144 (45.7%)
Ideal state 80 (25.3%) 41 (13.0%) 39 (27.1%)
No needs 119 (37.7%) 58 (18.4%) 46 (31.9%)
Some needs 107 (33.9%) 124 (39.4%) 51 (35.4%)
High-level needs 10 (3.1%) 92 (29.2%) 8 (5.6%)
Self-care 10.57 (< 0.001) 177 (56.2%)
Ideal state 127 (40.2%) 71 (22.5%) 70 (39.6%)
No needs 113 (35.8%) 89 (28.3%) 57 (32.1%)
Some needs 51 (16.1%) 90 (28.6%) 29 (16.4%)
High-level needs 25 (7.9%) 65 (20.6%) 21 (11.9%)
Personal safety 9.71 (< 0.001) 205 (65.1%)
Ideal state 228 (72.2%) 163 (51.8%) 162 (79.0%)
No needs 69 (21.8%) 59 (18.7%) 30 (14.6%)
Some needs 12 (3.8%) 59 (18.7%) 9 (4.4%)
High-level needs 7 (2.2%) 34 (10.8%) 4 (2.0%)
Social participation 10.20 (< 0.001) 190 (60.5%)
Ideal state 113 (35.9%) 71 (22.6%) 70 (36.8%)
No needs 96 (30.5%) 68 (21.7%) 47 (24.7%)
Some needs 80 (25.4%) 97 (30.9%) 49 (25.8%)
High-level needs 26 (8.2%) 78 (24.8%) 24 (12.7%)
Time and space to be myself 11.11 (< 0.001) 168 (53.3%)
Ideal state 67 (21.2%) 41 (13.0%) 40 (23.8%)
No needs 114 (36.1%) 61 (19.4%) 48 (28.6%)
Some needs 110 (34.8%) 117 (37.1%) 56 (33.3%)
High-level needs 25 (7.9%) 96 (30.5%) 24 (14.3%)
Feeling supported and encouraged 10.49 (< 0.001) 175 (56.1%)
Ideal state 66 (21.0%) 40 (12.8%) 37 (21.1%)
No needs 113 (36.0%) 64 (20.4%) 57 (32.6%)
Some needs 86 (27.4%) 80 (25.6%) 35 (20.0%)
High-level needs 49 (15.6%) 129 (41.2%) 46 (26.3%)

Notes: n = 316. * Missing values: social participation (n = 1); feeling supported and encouraged (n = 2). ** Missing values: occupation (n = 1); control (n = 1); self-care (n = 1); safety (n = 1); social participation (n = 2); time and space to be myself (n = 1); feeling supported and encouraged (n = 3).

The majority of the sample (75.9 per cent) had an overall positive preference-weighted ASCOT-Carer SCRQoL gain index score. This indicates that services improved SCRQoL to some degree. Of the remaining carers, most reported no impact of services on QoL (21.9 per cent). A small number of carers reported that services had an overall negative effect QoL (2.2 per cent).

The results of the regression analysis are shown in Table 6. After controlling for various factors related to QoL, including carer and care-related characteristics, care-recipient characteristics, and mode of interview administration, there was a significant positive relationship between the cost-weighted utilisation of social care services by the care-recipient and ASCOT-Carer SCRQoL gain (β = .023, p = 0.02). There was also a significant negative association between household financial difficulties and the estimated impact of services on SCRQoL (β = –.085, p = 0.01). Since the INT4 counterfactual self-estimation method in this study asked carers to consider the combined effect of publicly funded and privately purchased social care services, this negative relationship may reflect the reduced ability of households with fewer financial resources to purchase additional services to address QoL deficits that are not addressed by publicly funded support. Otherwise, as expected, none of the other control variables considered in these analyses were significantly associated with an effect of services on carers’ SCRQoL gain at the 5 per cent level.

Table 6:

Multiple regression of the ASCOT-Carer SCRQoL gain index score

Coefficient (B) Robust std error
Utilisation
 Cost-weighted utilisation (censored, log) 0.023* 0.010
 Had a carer’s assessment 0.043 0.033
Control factors: carer characteristics
 Aged ≥ 65 years –0.055 0.039
 Male 0.017 0.031
 Higher education (university or professional qualification) –0.026 0.030
 In paid employment < 0.001 0.038
 Financial situation: some or severe difficulties*** –0.084* 0.033
 Social contact (telephone): once or twice a week*** –0.009 0.029
 Social contact (telephone): monthly or less –0.037 0.040
 Social contact (meet up): once or twice a week*** –0.004 0.042
 Social contact (meet up): monthly or less –0.018 0.044
 Involved in social groups 0.047 0.029
 Care duration: 5 to 20 years*** 0.008 0.030
 Care duration: more than 20 years 0.033 0.041
 Hours of care per week: 10 to 34 hours*** –0.008 0.042
 Hours of care per week: 35 to 49 hours 0.004 0.050
 Hours of care per week: 50 hours or more 0.027 0.045
 Home design: meets most, some or no needs*** –0.019 0.029
 Mobility: no problems*** –0.059 0.033
 Health: fair*** –0.043 0.031
 Health: bad or very bad –0.076 0.041
Control factors: care-recipient characteristics
 Aged ≥ 65 years –0.026 0.031
 Male 0.033 0.032
 Log scale of care-recipient I/ADLs 0.045 0.023
 Help to complete one or more ASCOT-Carer questions –0.053 0.032
 Primary support reason: mental health –0.035 0.036
Interview administration
 Interview by telephone –0.012 0.037
Constant 0.137 0.084
n 292
R2 0.18
F value/LR Chi2 2.56**
Ramsey RESET test (misspecification) 1.06
White’s test (heteroscedasticity) 292.0

Notes: * p < 0.05; ** p < 0.01. *** Reference categories: financial situation: manage very well, well or with no difficulty; social contact (telephone or meet up): most days; care duration: less than five years; hours of care per week: < 10 hours; home design meets all needs of the carer; mobility: some or severe problems; health: good or very good.

Discussion

This study has identified the ways in which community-based social care services may affect carers’ SCRQoL through a novel counterfactual self-estimation method using the ASCOT-Carer INT4 (Rand et al, 2012). SCRQoL is a key outcome of adult social care services. The ASCOT-Carer INT4 is an extended and modified version of the carer SCRQoL measure, which is included as an overarching outcome indicator in the Adult Social Care Outcomes Framework (ASCOF) (Department of Health and Social Care, 2017).3 In a qualitative analysis, it was found that carers were able to describe whether and how community-based services affected each of the ASCOT-Carer SCRQoL attributes. This was confirmed by the quantitative analysis of a survey of carers in England, in which expected SCRQoL was significantly lower than current SCRQoL for all seven ASCOT-Carer attributes. Social care services were found to promote carers’ SCRQoL through substitution for care-related tasks, by supporting carers in self-care or access to other support, and by reappraising their role as a ‘carer’. Negative impacts of services were reported when services increased care-related tasks, undermined the carer in the caregiving role and contributed to subjective burden. However, for many carers, there was no self-reported effect of services on QoL for one or more of the ASCOT-Carer attributes.

The combined qualitative and quantitative findings are consistent with other qualitative studies of the barriers to accessing support and the benefit of community-based social care services in terms of carers’ strain, burden or QoL outcomes (for example, Winslow, 2003; Greenwood et al, 2015; Brimblecombe et al, 2018a, 2018b). The barriers identified in these studies include attitudes towards services, a lack of information enabling carers to access services, the actual or perceived unavailability of services (for example, due to eligibility criteria), and/or issues related to the quality or cost of services (Winslow, 2003; Rand and Malley, 2014; Brimblecombe et al, 2018a, 2018b). Most of these barriers are potentially relevant to all carers; however, the additional barriers of language and concerns regarding the religious or cultural appropriateness of services may be experienced by carers from minority ethnic groups (Greenwood et al, 2015). There is also some evidence that male carers are less likely to seek help, which may be related to an attitude of commitment to the role informed by a sense of duty or responsibility, as well as a lack of information (Greenwood and Smith, 2015).

There has been less focus on the mechanisms by which carers may benefit from services. This may be due to the focus in the literature on the evaluation of specific social care interventions or policy. An exception is a qualitative study of family carers in the US by Winslow (2003), which found that carers benefited from services, including carer support groups, through gaining knowledge, practical skills or care-related information, community and social/emotional support, and personal renewal. The study presented here adds to the social care evidence base to show how community-based support may affect carers’ SCRQoL. It was found that carers were able to weigh up and rate whether social care services had an effect on the ASCOT-Carer SCRQoL attributes (see Box 1). Respondents were also able to identify whether or how social care services (or other support) could improve their QoL. While ASCOT-Carer has not been used in England as a tool for the assessment of carers’ needs, it has the potential to be used in this way. Preliminary studies in Japan and Finland have shown promising results of the tool’s acceptability and feasibility for use as an assessment tool, despite the cultural and contextual differences (Kettunen, 2018; Yamaguchi and Rand, 2019).

The findings also contribute to an understanding of how to estimate the effect of services on carers’ SCRQoL. The counterfactual self-estimation method developed for the ASCOT to measure the impact of social care services on services users’ SCRQoL (Netten et al, 2012) has been adapted for use with family and friend carers (Rand et al, 2012). The ASCOT counterfactual self-estimation method was developed independently from a similar method for the evaluation of the impact of a climate educational programme on individuals’ attitudes and behaviour (Mueller et al, 2014; Mueller and Gaus, 2015). These methods share a conceptual basis in that they seek to estimate the impact of an intervention by using respondents’ own self-estimation of the counterfactual situation (that is, without the treatment or intervention). The difference between the factual and the self-estimated counterfactual provides an estimate of the impact of the intervention on outcomes. This method is especially useful in situations where the use of control or comparison groups is limited due to constraints on budget, time or inability to collect data.

The ASCOT-Carer INT4 counterfactual self-estimation method is based on an application of the same method applied to service users with the ASCOT (Malley et al, 2019). There is evidence that carers are able to construct their own counterfactual and estimate their QoL in an imagined situation that social care services were no longer available and no other help stepped in (Rand et al, 2012). However, imagining the counterfactual situation may evoke negative emotions, especially if the carer relies on services to maintain their well-being and has experienced a situation without them and/or is concerned over potential cuts to social care services (Rand et al, 2012). Furthermore, it was difficult to distinguish between services ‘for’ services users and ‘for’ carers, especially due to the indirect (‘spillover’) effects of social care interventions (Rand and Malley, 2014). Despite these challenges, the counterfactual self-estimation method was acceptable and feasible if respondents had sufficiently detailed information about the nature of the interview, the interviewer proceeded with sensitivity to the potential emotional impact of the interview, and carers were asked to consider all social care services regardless of who they were ‘for’ (Rand et al, 2012).

This survey of carers in England provides an insight into the (self-)estimated impact of social care on carers’ SCRQoL. The key finding was that the majority of carers (75.9 per cent) reported a positive effect of social care services on SCRQoL. As would be expected since carer-specific services are typically low intensity and the impact of social care on carers’ lives is usually indirect, that positive effect is relatively modest. Just over one in five carers reported no impact of services, while a small minority (2.2 per cent) reported negative effects. Even if the effects of services were modest, these results support the argument that social care interventions have some effect on carers’ QoL, though not in all cases. Negative impact also needs to be considered. Regression analysis to assess the construct validity of the ASCOT-Carer INT4 gain index score as a measure of the impact of services found that (as hypothesised) the self-estimated impact of services (ASCOT-Carer SCRQoL gain) was related to the intensity of service use by care-recipients. An unexpected significant negative association between ASCOT-Carer SCRQoL gain and household financial difficulties may be associated with the reduced ability of these households to top up support with privately funded services.

This study has a number of limitations. First, the study sample is limited to those carers known to local authority social services departments. The profile of this subgroup of carers is different from the wider population of carers in England. Therefore, further research is needed to explore the potential impact of social care support for carers not currently identified by services and/or with unmet needs. This is especially important given the policy context. Since the survey was conducted before the implementation of the Care Act 2014, which places responsibility on local authorities to identify and meet carers’ eligible unmet outcome needs, further data collection may be useful in identifying trends in the pattern of unmet needs and carers’ outcomes since then.

Second, a potential issue with counterfactual self-estimation is bias, that is, over- or underestimation of the counterfactual by self-estimation (Mueller et al, 2014; Mueller and Gaus, 2015; Malley et al, 2019). This self-estimation bias may be influenced by, for example, cognitive biases that may be linked to depression or cognitive impairment. As such, the systematic under- or overestimation of impact may vary by the characteristics of the respondent. Indeed, a preliminary study of the self-estimation using ASCOT found statistically significant underestimation by comparison with another estimation method (the production function approach) (Forder et al, 2018) that varied by individual characteristics, for example, level of social care need (Malley et al, 2019). In this study, the sample size is limited, so we were unable to replicate this comparison between counterfactual self-estimation (ASCOT-Carer INT4) and the production function method applied to carers (Forder et al, 2018). Therefore, further research is needed to establish the extent of self-estimation bias with the ASCOT-Carer INT4 method by comparing carers’ self-estimation of impact against estimates from other study designs or methods (for example, the production function approach).

Conclusion

This study has identified ways in which carers experience the effects of social care on their QoL. This is important if social care is to achieve its stated aim of improving the QoL of service users and their carers, which forms the basis of English carers’ policy strategy and the Care Act 2014 (Department of Health and Social Care, 2017; 2018). In reality, this is challenging. Despite greater rights and entitlements under the Care Act 2014, there has been a reduction in uptake of carers’ assessments and access to services (National Audit Office, 2015). This ought to be a concern if – as has been shown in this study – social care support has the potential to improve QoL. That said, the findings also indicate that there are issues related to whether interventions are accessible, of adequate quality and intensity, and tailored to the needs of carers – especially for those in ‘at risk’ subgroups (for example, working carers). The ASCOT-Carer INT4 offers a method by which interventions and policies may be evaluated, as well as potentially a way of assessing need in a manner that could identify the right services and support for individual needs. However, all of this depends on having accessible, effective and reliable high-quality support available to carers with support needs.

Funding

This article is based on independent research commissioned and funded by the National Institute for Health Research (NIHR) Policy Research Programme, the Quality and Outcomes of Person-Centred Care Policy Research Unit (QORU). The views expressed in the publication are those of the authors, and not necessarily those of the National Health Service (NHS), NIHR, Department of Health and Social Care or its arm’s-length bodies, or other government departments.

Acknowledgements

We would like to acknowledge and thank: Dr Juliette Malley and Professor Ann Netten for their advice and involvement in the data collection; Sarah Godfrey for proofreading and editing the manuscript; and the participating organisations and participants for their support for the study.

Notes

1

The questionnaire is available at: www.pssru.ac.uk/ascot

2

This scale was calculated from the following eight I/ADLs: getting around the house; getting in/out of bed or a chair; feeding yourself; dealing with money and paperwork; washing in a bath or shower; getting (un)dressed; using the toilet; and washing face and hands. Each item was rated as able to do it without help (0), with difficulty on my own (1), only with help (2) or unable to complete at all (3). The sum of the score for each of the eight items forms a scale from 0 (no needs) to 24 (severe needs).

3

The ASCOT-Carer was developed based on the Carer SCRQoL (Rand et al, 2012). The two measures have six overlapping SCRQoL domains; however, the ASCOT-Carer INT4 includes an additional domain. It also has four levels of response, by comparison to the Carer SCRQoL’s three levels of response, and is also a preference-weighted measure (Rand et al, 2015; Batchelder et al, 2018). The Carer SCRQoL only provides the current QoL score. By contrast, the ASCOT-Carer allows the calculation of current, expected (without services) and gain (impact of service) scores.

Conflict of interest

The authors declare that there is no conflict of interest.

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  • Forder, J., Vadean, F., Rand, S. and Malley, J. (2018) The impact of long-term care on quality of life, Health Economics (United Kingdom), 27(3): e43e58. doi: 10.1002/hec.3612

    • Search Google Scholar
    • Export Citation
  • Goodrich, K., Kaambwa, B. and Al-Janabi, H. (2012) The inclusion of informal care in applied economic evaluation: a review, Value in Health, 15(6): 97581. doi: 10.1016/j.jval.2012.05.009

    • Search Google Scholar
    • Export Citation
  • Greenwood, N. and Smith, R. (2015) Barriers and facilitators for male carers in accessing formal and informal support: a systematic review, Maturitas, 82(2): 1629. doi: 10.1016/j.maturitas.2015.07.013

    • Search Google Scholar
    • Export Citation
  • Greenwood, N., Habibi, R., Smith, R. and Manthorpe, J. (2015) Barriers to access and minority ethnic carers’ satisfaction with social care services in the community: a systematic review of qualitative and quantitative literature, Health & Social Care in the Community, 23(1): 6478.

    • Search Google Scholar
    • Export Citation
  • Hoefman, R.J., Van Exel, J. and Brouwer, W. (2013) How to include informal care in economic evaluations, PharmacoEconomics, 31(12): 110519. doi: 10.1007/s40273-013-0104-z

    • Search Google Scholar
    • Export Citation
  • Hoffmann, F. and Rodrigues, R. (2010) Informal carers: who takes care of them?, http://citeseerx.ist.psu.edu/viewdoc/summary?doi=10.1.1.627.6793

    • Search Google Scholar
    • Export Citation
  • Kettunen, A. (2018) Supporting informal carers: testing feasibility of the CES and the Carer SCT4 measures as a part of care practice, paper presented at the Fifth International Conference on Evidence-Based Policy in Long-Term Care. 10th to 12th September 2018, WU Vienna University of Economics and Business, Vienna.

    • Search Google Scholar
    • Export Citation
  • King, D. and Pickard, L. (2013) When is a carer’s employment at risk? Longitudinal analysis of unpaid care and employment in midlife in England, Health & Social Care in the Community, 21(3): 30314.

    • Search Google Scholar
    • Export Citation
  • Kingston, A., Robinson, L., Booth, H., Knapp, M. and Jagger, C. (2018) Projections of multi-morbidity in the older population in England to 2035: estimates from the Population Ageing and Care Simulation (PACSim) model, Age and Ageing, 47(3): 37480. doi: 10.1093/ageing/afx201

    • Search Google Scholar
    • Export Citation
  • Linnosmaa, I., Jokimäki, H. and Nguyen, L. (2019) Exploring Comparative Effectiveness and Efficiency in Long-term Care: Fieldwork Data Collection in Finland and Some Descriptive Findings, Helsinki: Diaconia University of Applied Sciences.

    • Search Google Scholar
    • Export Citation
  • Linnosmaa, I., Trukeschitz, B., Kruese, T., Hajji, A., Lien Nguyen, T., Malley, J., Razik, K. and Forder, J. (2018) Translation and cross-cultural validation of ASCOT instruments into German and Finnish, paper presented at the Fifth International Conference on Evidence-Based Policy in Long-Term Care, 10th to 12th September 2018, WU Vienna University of Economics and Business, Vienna.

  • Malley, J.N., Rand, S.E., Netten, A.P., Towers, A.-M. and Forder, J.E. (2019) Exploring the feasibility and validity of a pragmatic approach to estimating the impact of long-term care: the ‘expected’ ASCOT method, Journal of Long-Term Care, 6783. https://journal.ilpnetwork.org/issue/archive/

    • Search Google Scholar
    • Export Citation
  • McCabe, C. (2019) Expanding the scope of costs and benefits for economic evaluations in health: some words of caution, PharmacoEconomics, 37(4): 45760.

    • Search Google Scholar
    • Export Citation
  • Mueller, C.E. and Gaus, H. (2015) Assessing the performance of the ‘counterfactual as self-estimated by program participants’, American Journal of Evaluation, 36(1): 724. doi: 10.1177/1098214014538487

    • Search Google Scholar
    • Export Citation
  • Mueller, C.E., Gaus, H. and Rech, J. (2014) The counterfactual self-estimation of program participants, American Journal of Evaluation, 35(1): 825. doi: 10.1177/1098214013503182

    • Search Google Scholar
    • Export Citation
  • National Audit Office (2015) Care Act first-phase reforms, London. Department of Health and Social Care.

  • National Audit Office (2018) Adult social care at a glance, London. Department of Health and Social Care.

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    • Search Google Scholar
    • Export Citation
  • NHS Digital (2010) Survey of carers in households 2009/10, Leeds: NHS Digital.

  • NHS Digital (2013) Personal social services survey of adult carers in England 2012/13, Leeds: NHS Digital.

  • Pickard, L. (2004) The effectiveness and cost-effectiveness of support and services to informal carers of older people, Literature review for the Audit Commission, London.

    • Search Google Scholar
    • Export Citation
  • Pickard, L. (2015) A growing care gap? The supply of unpaid care for older people by their adult children in England to 2032, Ageing and Society, 35(1): 96123. doi: 10.1017/S0144686X13000512

    • Search Google Scholar
    • Export Citation
  • Rand, S. and Malley, J. (2014) Carers’ quality of life and experiences of adult social care support in England, Health & Social Care in the Community, 22(4): 37585.

    • Search Google Scholar
    • Export Citation
  • Rand, S., Malley, J. and Netten, A. (2012) Measuring the Social Care Outcomes of Informal Carers: An Interim Technical Report for Identifying the Impact of Adult Social Care (IIASC), Canterbury: Personal Social Services Research Unit, University of Kent.

    • Search Google Scholar
    • Export Citation
  • Rand, S., Malley, J., Netten, A. and Forder, J. (2015) Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer), Quality of Life Research, 24(11): 260114. doi: 10.1007/s11136-015-1011-x

    • Search Google Scholar
    • Export Citation
  • Rand, S., Forder, J. and Malley, J. (2017) A study of dyadic interdependence of control, social participation and occupation of adults who use long-term care services and their carers, Quality of Life Research, 26(12): 330721. doi: 10.1007/s11136-017-1669-3

    • Search Google Scholar
    • Export Citation
  • Ritchie, J. and Lewis, J. (2003) Qualitative Research Practice: A Guide for Social Science Students and Researchers, London: Sage.

  • Schmitz, H. and Westphal, M. (2015) Short- and medium-term effects of informal care provision on female caregivers’ health, Journal of Health Economics, 42: 17485. doi: 10.1016/j.jhealeco.2015.03.002

    • Search Google Scholar
    • Export Citation
  • Twigg, J. (1989) Models of carers: how do social care agencies conceptualise their relationship with informal carers?, Journal of Social Policy, 18(1): 5366. doi: 10.1017/S0047279400017207

    • Search Google Scholar
    • Export Citation
  • Van den Berg, B., Fiebig, D.G. and Hall, J. (2014) Well-being losses due to care-giving, Journal of Health Economics, 35: 12331. doi: 10.1016/j.jhealeco.2014.01.008

    • Search Google Scholar
    • Export Citation
  • Van Houtven, C.H. and Norton, E.C. (2004) Informal care and health care use of older adults, Journal of Health Economics, 23(6): 115980. doi: 10.1016/j.jhealeco.2004.04.008

    • Search Google Scholar
    • Export Citation
  • Willis, G. (2005) Cognitive Interviewing: A Tool for Improving Questionnaire Design, London: Sage.

  • Winslow, B.W. (2003) Family caregivers’ experiences with community services: a qualitative analysis, Public Health Nursing, 20(5): 3418. doi: 10.1046/j.1525-1446.2003.20502.x

    • Search Google Scholar
    • Export Citation
  • Yamaguchi, M. and Rand, S. (2019) Issues and challenges in comparing carers’ quality of life in England and Japan: lessons from developing a Japanese version of the ASCOT-Carer, International Journal of Care and Caring, 3(3): 45964. doi: 10.1332/239788219X15597493546625

    • Search Google Scholar
    • Export Citation
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  • Forder, J.E., Malley, J.N., Rand, S.E., Vadean, F., Jones, K. and Netten, A.P. (2016) Interpreting outcomes data for use in the Adult Social Care Outcomes Framework (ASCOF), Canterbury: Personal Social Services Research Unit, University of Kent.

    • Search Google Scholar
    • Export Citation
  • Forder, J., Vadean, F., Rand, S. and Malley, J. (2018) The impact of long-term care on quality of life, Health Economics (United Kingdom), 27(3): e43e58. doi: 10.1002/hec.3612

    • Search Google Scholar
    • Export Citation
  • Goodrich, K., Kaambwa, B. and Al-Janabi, H. (2012) The inclusion of informal care in applied economic evaluation: a review, Value in Health, 15(6): 97581. doi: 10.1016/j.jval.2012.05.009

    • Search Google Scholar
    • Export Citation
  • Greenwood, N. and Smith, R. (2015) Barriers and facilitators for male carers in accessing formal and informal support: a systematic review, Maturitas, 82(2): 1629. doi: 10.1016/j.maturitas.2015.07.013

    • Search Google Scholar
    • Export Citation
  • Greenwood, N., Habibi, R., Smith, R. and Manthorpe, J. (2015) Barriers to access and minority ethnic carers’ satisfaction with social care services in the community: a systematic review of qualitative and quantitative literature, Health & Social Care in the Community, 23(1): 6478.

    • Search Google Scholar
    • Export Citation
  • Hoefman, R.J., Van Exel, J. and Brouwer, W. (2013) How to include informal care in economic evaluations, PharmacoEconomics, 31(12): 110519. doi: 10.1007/s40273-013-0104-z

    • Search Google Scholar
    • Export Citation
  • Hoffmann, F. and Rodrigues, R. (2010) Informal carers: who takes care of them?, http://citeseerx.ist.psu.edu/viewdoc/summary?doi=10.1.1.627.6793

    • Search Google Scholar
    • Export Citation
  • Kettunen, A. (2018) Supporting informal carers: testing feasibility of the CES and the Carer SCT4 measures as a part of care practice, paper presented at the Fifth International Conference on Evidence-Based Policy in Long-Term Care. 10th to 12th September 2018, WU Vienna University of Economics and Business, Vienna.

    • Search Google Scholar
    • Export Citation
  • King, D. and Pickard, L. (2013) When is a carer’s employment at risk? Longitudinal analysis of unpaid care and employment in midlife in England, Health & Social Care in the Community, 21(3): 30314.

    • Search Google Scholar
    • Export Citation
  • Kingston, A., Robinson, L., Booth, H., Knapp, M. and Jagger, C. (2018) Projections of multi-morbidity in the older population in England to 2035: estimates from the Population Ageing and Care Simulation (PACSim) model, Age and Ageing, 47(3): 37480. doi: 10.1093/ageing/afx201

    • Search Google Scholar
    • Export Citation
  • Linnosmaa, I., Jokimäki, H. and Nguyen, L. (2019) Exploring Comparative Effectiveness and Efficiency in Long-term Care: Fieldwork Data Collection in Finland and Some Descriptive Findings, Helsinki: Diaconia University of Applied Sciences.

    • Search Google Scholar
    • Export Citation
  • Linnosmaa, I., Trukeschitz, B., Kruese, T., Hajji, A., Lien Nguyen, T., Malley, J., Razik, K. and Forder, J. (2018) Translation and cross-cultural validation of ASCOT instruments into German and Finnish, paper presented at the Fifth International Conference on Evidence-Based Policy in Long-Term Care, 10th to 12th September 2018, WU Vienna University of Economics and Business, Vienna.

  • Malley, J.N., Rand, S.E., Netten, A.P., Towers, A.-M. and Forder, J.E. (2019) Exploring the feasibility and validity of a pragmatic approach to estimating the impact of long-term care: the ‘expected’ ASCOT method, Journal of Long-Term Care, 6783. https://journal.ilpnetwork.org/issue/archive/

    • Search Google Scholar
    • Export Citation
  • McCabe, C. (2019) Expanding the scope of costs and benefits for economic evaluations in health: some words of caution, PharmacoEconomics, 37(4): 45760.

    • Search Google Scholar
    • Export Citation
  • Mueller, C.E. and Gaus, H. (2015) Assessing the performance of the ‘counterfactual as self-estimated by program participants’, American Journal of Evaluation, 36(1): 724. doi: 10.1177/1098214014538487

    • Search Google Scholar
    • Export Citation
  • Mueller, C.E., Gaus, H. and Rech, J. (2014) The counterfactual self-estimation of program participants, American Journal of Evaluation, 35(1): 825. doi: 10.1177/1098214013503182

    • Search Google Scholar
    • Export Citation
  • National Audit Office (2015) Care Act first-phase reforms, London. Department of Health and Social Care.

  • National Audit Office (2018) Adult social care at a glance, London. Department of Health and Social Care.

  • Netten, A., Burge, P., Malley, J., Potoglou, D., Towers, A.M., Brazier, J., Flynn, T., Forder, J. and Wall, B. (2012) Outcomes of social care for adults: developing a preference-weighted measure, Health Technology Assessment, 16(16): 1165. doi: 10.3310/hta16160

    • Search Google Scholar
    • Export Citation
  • NHS Digital (2010) Survey of carers in households 2009/10, Leeds: NHS Digital.

  • NHS Digital (2013) Personal social services survey of adult carers in England 2012/13, Leeds: NHS Digital.

  • Pickard, L. (2004) The effectiveness and cost-effectiveness of support and services to informal carers of older people, Literature review for the Audit Commission, London.

    • Search Google Scholar
    • Export Citation
  • Pickard, L. (2015) A growing care gap? The supply of unpaid care for older people by their adult children in England to 2032, Ageing and Society, 35(1): 96123. doi: 10.1017/S0144686X13000512

    • Search Google Scholar
    • Export Citation
  • Rand, S. and Malley, J. (2014) Carers’ quality of life and experiences of adult social care support in England, Health & Social Care in the Community, 22(4): 37585.

    • Search Google Scholar
    • Export Citation
  • Rand, S., Malley, J. and Netten, A. (2012) Measuring the Social Care Outcomes of Informal Carers: An Interim Technical Report for Identifying the Impact of Adult Social Care (IIASC), Canterbury: Personal Social Services Research Unit, University of Kent.

    • Search Google Scholar
    • Export Citation
  • Rand, S., Malley, J., Netten, A. and Forder, J. (2015) Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer), Quality of Life Research, 24(11): 260114. doi: 10.1007/s11136-015-1011-x

    • Search Google Scholar
    • Export Citation
  • Rand, S., Forder, J. and Malley, J. (2017) A study of dyadic interdependence of control, social participation and occupation of adults who use long-term care services and their carers, Quality of Life Research, 26(12): 330721. doi: 10.1007/s11136-017-1669-3

    • Search Google Scholar
    • Export Citation
  • Ritchie, J. and Lewis, J. (2003) Qualitative Research Practice: A Guide for Social Science Students and Researchers, London: Sage.

  • Schmitz, H. and Westphal, M. (2015) Short- and medium-term effects of informal care provision on female caregivers’ health, Journal of Health Economics, 42: 17485. doi: 10.1016/j.jhealeco.2015.03.002

    • Search Google Scholar
    • Export Citation
  • Twigg, J. (1989) Models of carers: how do social care agencies conceptualise their relationship with informal carers?, Journal of Social Policy, 18(1): 5366. doi: 10.1017/S0047279400017207

    • Search Google Scholar
    • Export Citation
  • Van den Berg, B., Fiebig, D.G. and Hall, J. (2014) Well-being losses due to care-giving, Journal of Health Economics, 35: 12331. doi: 10.1016/j.jhealeco.2014.01.008

    • Search Google Scholar
    • Export Citation
  • Van Houtven, C.H. and Norton, E.C. (2004) Informal care and health care use of older adults, Journal of Health Economics, 23(6): 115980. doi: 10.1016/j.jhealeco.2004.04.008

    • Search Google Scholar
    • Export Citation
  • Willis, G. (2005) Cognitive Interviewing: A Tool for Improving Questionnaire Design, London: Sage.

  • Winslow, B.W. (2003) Family caregivers’ experiences with community services: a qualitative analysis, Public Health Nursing, 20(5): 3418. doi: 10.1046/j.1525-1446.2003.20502.x

    • Search Google Scholar
    • Export Citation
  • Yamaguchi, M. and Rand, S. (2019) Issues and challenges in comparing carers’ quality of life in England and Japan: lessons from developing a Japanese version of the ASCOT-Carer, International Journal of Care and Caring, 3(3): 45964. doi: 10.1332/239788219X15597493546625

    • Search Google Scholar
    • Export Citation
Stacey RandUniversity of Kent, UK

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Florin VadeanUniversity of Kent, UK

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Julien ForderUniversity of Kent, UK

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