Caring hours and possible need for employment support among primary carers for adults with mental illness: Results from an Australian household survey

Intensive unpaid caring is associated with greater likelihood of not being employed, but impacts for mental health carers specifically remain unknown. This study aimed to: (a) examine the association between caring intensity and not being employed for primary mental health carers, (b) ascertain whether this relationship differs from that for other disability carers, (c) enumerate Australian primary mental health carers with a possible need for employment support and (d) describe these carers’ unmet support needs and barriers to employment. Co‐resident, working age primary mental health (n = 137) and other disability carers (n = 821) were identified in the Survey of Disability, Ageing and Carers (collected July‐December 2015). Multiple logistic regression analyses examined associations between levels of caring intensity (1–9, 10–19, 20–39, 40+ hr/week) and not being employed. A ‘possible need for employment support’ indicator was derived from information about current employment status, caring hours, past impact of caring on employment and desire for more work or workplace accommodations. After controlling for demographic and caring role factors, mental health carers providing 40+ hr of care weekly had greater odds of not being employed compared to carers providing <10 hr (AOR 13.38, 95% CI: 2.17–82.39). For other disability carers, the odds of not being employed were also higher among those providing 20–39 hr of care (AOR 3.21, 95% CI: 2.18–4.73). An estimated 54.1% (95% CI: 43.1–64.8) of carers had a possible need for employment support, with the proportion increasing as level of caring intensity increased. Of carers who were not employed, 42.2% (95% CI: 30.3–55.0) reported a desire to work, and the main reported barrier was no alternative care arrangements or disruption to the person supported. Findings suggest that improving employment participation for mental health carers requires a greater balance between unpaid care and access to formal services for people with mental illness.     

Are reasons for care‐giving related to carers’ care‐related quality of life and strain? Evidence from a survey of carers in England

In England, choice and control is promoted for service users in relation to social care services. Increased choice and control has also been promoted for unpaid carers, although this is still relatively underdeveloped. There is limited recognition of carers’ choice in terms of the decision of whether to provide care. Alongside the promotion of choice and control, there has also been a focus on quality of life as an outcome of social care for care‐recipients and their carers. Although it is known that carer choice (in terms of the decision of whether or not to provide care) is related to increased burden and poorer psychological health, there is limited evidence of the relationship between reasons for caring and care‐related quality of life (CRQoL) and subjective strain in England. In this study, 387 carers were surveyed across 22 English local authorities between June 2013 and March 2014. Multiple regression analysis explored the relationship between carer‐reported reasons for caring and CRQoL and strain, whilst controlling for individual characteristics (e.g. age). Reasons for caring were important predictors of CRQoL and strain. Where people were carers because social services suggested it or the care‐recipient would not want help from anyone else, this was related to lower CRQoL. By contrast, where carers took on care‐giving because they had time to care, this was significantly associated with better CRQoL. Carers reported greater strain where they provided care because it was expected of them. These findings are relevant to policy and practice because they indicate that, while social care systems rely on carers, the limiting of carers’ choice of whether to provide care is related to worse outcomes. Increased awareness of this relationship would be beneficial in developing policy and practice that improves the QoL of care‐recipients and also their carers.     

Enhancing primary care support for informal carers: A scoping study with professional stakeholders

Informal carers (i.e. people who provide unpaid care to family and/or friends) are crucial in supporting people with long‐term conditions. Caring negatively impacts on carers’ health and experiences of health services. Internationally and nationally, policies, legislation, professional guidance and research advocate for health and care services to do more to support carers. This study explored the views of health and social care providers, commissioners and policy makers about the role and scope for strengthening health service support for carers. Twenty‐four semi‐structured interviews, with 25 participants were conducted, audio‐recorded, transcribed verbatim and analysed by thematic analysis. Three main themes emerged: (a) identifying carers, (b) carer support, and (c) assessing and addressing carer needs. Primary care, and other services, were seen as not doing enough for carers but having an important role in identifying and supporting carers. Two issues with carer identification were described, first people not self‐identifying as carers and second most services not being proactive in identifying carers. Participants thought that carer needs should be supported by primary care in collaboration with other health services, social care and the voluntary sector. Concerns were raised about primary care, which is under enormous strain, being asked to take on yet another task. There was a clear message that it was only useful to involve primary care in identifying carers and their needs, if benefit could be achieved through direct benefits such as better provision of support to the carer or indirect benefit such as better recognition of the carer role. This study highlights that more could be done to address carers’ needs through primary care in close collaboration with other health and care services. The findings indicate the need for pilots and experiments to develop the evidence base. Given the crucial importance of carers, such studies should be a high priority.     

Estimating service demand for respite care among informal carers of people with psychological disabilities in Australia

Objective: To estimate service demand (willingness to seek or use services) for respite care among informal, primary carers of people with a psychological disability and to describe their characteristics. Methods: Analysis of data from the household component of the 2009 Survey of Disability Ageing and Carers (n=64,213 persons). Results: In Australia in 2009, 1.0% of people aged 15 years or over (177,900 persons) provided informal, primary care to a co‐resident with a psychological disability. One‐quarter (27.2%) of these carers reported service demand for respite care, of whom one‐third had used respite services in the past three months and four‐fifths had an unmet need for any or more respite care. A significantly greater percentages of carers with service demand for respite care spent 40 or more hours per week on caregiving, provided care to a person with profound activity restrictions and reported unmet support needs, compared to carers without service demand. Lack of suitable, available respite care models was a barrier to utilisation. Conclusions: Findings confirm significant service demand for, and under‐utilisation of, respite care among mental health carers. Implications: Increased coverage of respite services, more flexible service delivery models matched to carers’ needs and better integration with other support services are indicated.     

A multi-centre survey among informal carers who manage medication for older care recipients: problems experienced and development of services

The UK Government has highlighted the need to develop appropriate information and support services for informal carers. Previous research that has investigated informal caring has found that managing medication is one aspect of the caring role that presents its own problems; however, these have not been subject to detailed examination. The objective of the present paper was to report the number and type of problems experienced by informal carers when managing medication for older care recipients, and to relate these to measures of coping and health. This was a cross-sectional survey undertaken in one district in each of four randomly selected health authority areas in England. Structured interviews, comprising closed and open questions, with 184 informal carers and 93 associated older care recipients were conducted in participants' own homes. Data were gathered on the number and type of medication-related problems experienced in relation to the informal caring role, and the impact of these from carers' perspectives in terms of coping and health. Sixty-seven per cent of carers reported problems with at least one medication-related activity. Problems were associated with all types of medication-related activities, and experienced by carers providing different levels of care for older people. Four themes were identified from carers' accounts which illustrated a diversity of practical problems and anxieties: maintaining continuous supplies of medication in the home; assisting with administration; making clinical judgements; and communicating with care recipients and health professionals. Carers reporting greater numbers of medication-related problems were more likely to experience higher levels of carer strain (P < 0.001) and poorer mental health status (P < 0.001). The findings of the present study provide insights to inform the development of primary care services to support informal carers in the management of medication for older people.     

Carers' quality of life and experiences of adult social care support in England

Informal carers make a vital contribution to the well‐being of the people they care for or look after. Against the policy background in England, the purpose of this study was to explore the views of carers who are in contact with adult social care support services. A qualitative study with 31 carers, who were recruited via local authorities and carers' organisations, was conducted between April and July 2012 to collect data on carers' experiences and perceptions of their quality of life (QoL) with and without adult social care and support for themselves or the person they look after. Through framework analysis, three key themes were identified: (i) definitions of social care services ‘for’ the carer or ‘for’ care recipient and social care outcomes; (ii) carers' access to social care services; and (iii) the meaning and value of informal care. We find that carers' QoL is affected by social care support directed at carers and support directed at those they care for, as well as access to services, the experience of stigma in communities, and in how individual needs and preferences are considered when making decisions about care. While there is much to welcome in the direction of policy in England, this study has shown that there are some gaps in thinking around these areas that will need to be addressed if the lives of carers are to be improved.     

Why carers of people with dementia do not utilise out‐of‐home respite services

While many people with dementia require institutional care, having a co‐resident carer improves the likelihood that people can live at home. Although caregiving can have positive aspects, carers still report a high need for respite. Despite this need, the use of respite services for carers of people with dementia is often low. This article investigates carer beliefs regarding out‐of‐home respite services and why some carers do not utilise them. A total of 152/294 (51.7%) carers of community‐dwelling people with dementia (NSW, Australia) who were sent a survey completed it (November 2009–January 2010). Despite reporting unmet need for both services, 44.2% of those surveyed were not utilising day respite and 60.2% were not utilising residential respite programmes. Binary logistic regression models were used to examine factors associated with non‐use using the Theory of Planned Behaviour within an expanded Andersen Behavioural Model on a final sample of 113 (due to missing data). The model explained 66.9% of the variation for day centres, and 42% for residential respite services. Beliefs that service use would result in negative outcomes for the care recipient were strongly associated with non‐use of both day care [OR 13.11; 95% CI (3.75, 45.89)] and residential respite care [OR 6.13; 95% CI (2.02, 18.70)] and were more strongly associated with service non‐use than other predisposing, impeding and need variables. For some carers who used services despite negative outcome beliefs, the benefits of respite service use may also be diminished. To improve use of out‐of‐home respite services in this vulnerable group, service beliefs should be addressed through service development and promotion that emphasises benefits for both carer and care recipients. Future research utilising behavioural service models may also be improved via the inclusion of service beliefs in the study of health and social service use.     

Informal care: the views of people receiving care

Informal care is perceived to be the best option for people who require assistance to look after themselves. National and international studies of informal care have focused on the carer, not on the care provided, or the needs and experiences of the care recipients. In the present study, 55 people receiving informal care (21 males and 24 females, mean age = 67.6) were surveyed to determine the type of assistance that they receive, perceptions of the quality of their care, feelings about being looked after by a carer and their perceptions of the services which would be useful. A random sample of 531 households were selected as part of a larger study into informal care in the west of Ireland. A total of 98 carers were identified and 55 of the people they looked after were well enough to participate in the study. Over two-thirds of carers assisted with household chores (e.g. cleaning, preparing meals and shopping). Other activities which carers assisted with included keeping the person safe from household accidents (62%), personal care (42%), and dressing and undressing (31%). Whilst most were very satisfied with the quality of care, a minority reported dissatisfaction, and stated that their carer showed signs of anger and frustration. Common concerns related to the health of the carer, their safety when the carer is not available and the cost of being cared for. Financial support for the person receiving care and the carer were the main priorities for these individuals. The present study points to a need for greater involvement of care recipients in planning services relating to informal care, and support and access to health professionals for people receiving care. People receiving care are also concerned about the level of financial support for themselves and their carers.     

A review of the factors associated with the non‐use of respite services by carers of people with dementia: implications for policy and practice

The use of respite services by carers has been shown to extend the length of time people with dementia can remain living in the community with family support. However, the use of respite services by informal carers of people with dementia is often low and does not appear to match carer need. To better understand how to address carers' unmet need for respite, the factors that impede respite service use must be identified. To achieve this, a narrative synthesis of published academic literature (1990–2011) was undertaken regarding factors associated with not utilising different types of respite services utilising Anderson's Behavioural Model of Service Use. The review reinforces the importance of the assessment and matching of services to the needs of individual carers and care recipients at the local level. It also highlights the need to move beyond care pathways for individuals. To support respite use there is a need for local action to be augmented at a community or population level by strategies to address attitudinal and resource barriers that influence sub‐groups of the carer population who may be more vulnerable to service non‐use.     

Stress and well‐being of unpaid carers supporting claimants through disability benefit assessments

This study assessed the subjective well‐being and perceived stress of unpaid carers of disability benefit claimants. A total of 129 carers from the UK were surveyed between July and September 2017, using a cross‐sectional design. Carers, who provided unpaid support to sick or disabled friends, family or neighbours in a non‐professional capacity, reported here as unpaid carers, were asked to complete a web‐based questionnaire comprising of the Perceived Stress–10‐item Scale (PSS‐10), the Personal Wellbeing Index–Adult (PWI‐A), sociodemographic characteristics, the time they spent caring per day and the number of Personal Independence Payment and Work Capability Assessment interviews prepared for and attended by the person they cared for. Hierarchical regression analyses were performed to assess the effects of the number of benefit assessments on stress and well‐being scores, controlling for carers' sociodemographic characteristics and the time they spent caring. Analyses revealed that the number of times that claimants were exposed to benefit assessments significantly and negatively predicted unpaid carers' well‐being and was positively related to their stress levels. After controlling for sociodemographic characteristics and hours supporting per day, benefit assessments predicted 8.1% of perceived stress and 4.3% of well‐being variance. Being a female unpaid carer of a disability benefit claimant negatively predicted 7.5% of well‐being variance. The results offered unique evidence of the negative psychological effects of disability benefit assessments upon unpaid carers, while adding to the evidence of female carers facing increased risks of psychological distress.     

Pre‐ and post‐training evaluation of dental efficacy and activation measures in carers of adults with disabilities in South Australia – a pilot study

The aim of this pilot study was to train carers to provide oral care for adults with disabilities and to evaluate the training programme. Forty‐one carers of 103 care recipients from three disability organisations in South Australia were trained in providing oral care for adults with disabilities (April 2013–April 2014). The training included an oral presentation and practical session by a special needs dentist on completing oral health assessments (OHA), developing oral healthcare plans, providing oral hygiene care and assessing the need for dental referral. Continued support was provided via home visits by dental hygienists for the first 2 months and a dentist visit at 3 months. At 6 months, agreement on OHAs between the dentist and trained carers was assessed. Pre‐ and post‐training questionnaires (at 6 months) collected information on dental behaviours of carers and psychosocial factors: carer activation measure‐knowledge (CAM‐Knowledge), carer activation measure‐skills (CAM‐Skills), carer activation measure‐confidence (CAM‐Confidence) and carer dental efficacy (CDE) items (carer diligence, self‐efficacy and priority). Post‐training (among 16 retained carers), there were significant increases in the mean scores of CAM‐Knowledge and CAM‐Confidence, but not for CAM‐Skills (paired‐samples t‐tests, α = 0.05). Per cent agreement of CDE items varied little between questionnaires. Carer–dentist agreement on OHAs was generally high with kappa values ranging from 0.63 for the assessment of gums to 1.0 for the assessment of tongue, roof of mouth, denture and dental pain. Further, carers were able to assess the need for referral of their care recipients’ oral health similar to the dentist. These findings suggest that with combined theoretical and practical training and continued support, non‐dental professionals like carers can improve their knowledge and confidence in providing oral care for adults with disabilities. However, the findings of this pilot study need to be confirmed by further research in a larger study.     

When is a carer’s employment at risk? Longitudinal analysis of unpaid care and employment in midlife in England

This article examines the thresholds at which provision of unpaid care affects employment in England. Previous research has shown that providing care for 20 or more hours a week has a negative effect on employment. The present article explores the impact of a lower threshold and asks whether provision of care for 10 or more hours a week has a negative effect on employment. The article focuses on women and men aged between 50 and State Pension Age (60 for women, 65 for men). The study uses data from the first four waves of the English Longitudinal Study of Ageing (ELSA), collected in 2002/2003, 2004/2005, 2006/2007 and 2008/2009. Across these waves, there are 17 123 people aged 50–59/64 years, of whom 9% provide unpaid care to an adult. Using logistic regression analysis of the longitudinal data, the study finds that employed women in their fifties who start providing care for <10 hours a week are significantly more likely to remain in employment one wave later than similar women who have not started to provide care. In contrast, employed women in their fifties who start providing care for 10 or more hours a week are significantly less likely to remain in employment one wave later than similar women who have not started to provide care. Employed men aged between 50 and State Pension Age, who provide care for 10 or more hours a week at the beginning of the period have a significantly reduced employment rate one wave later than those who do not provide care. The study therefore suggests that carers’ employment may be negatively affected when care is provided at a lower intensity than is generally estimated in England. This has important implications for local authorities, who have a duty to provide services to carers whose employment is at risk.     

Support for Australian carers from community pharmacy: Insight into carer perspectives of a novel service

The feasibility of an individualised carer support service delivered in community pharmacies was assessed from the perspective of carer participants using a pre–post questionnaire and semistructured interviews. Eligible pharmacies were required to offer a medication management service relevant to carers and have a semiprivate space for conversations. Carers were required to self‐identify as an unpaid support person for someone with a chronic condition or disability. Between September 2016 and March 2017, staff from 11 community pharmacies in South‐East Queensland, Australia were trained, and provided with ongoing mentoring from a pharmacist and carer to support service implementation. Identification of carers and support to achieve a personal and care‐giving goal were key features of the service. Questionnaires included the EQ‐5D‐3L, the Bakas Caregiving Outcomes Scale, and questions relating to goal achievement, carer roles, and responsibilities. Seven follow‐up carer interviews were undertaken between March and May 2017 and analysed thematically. Pre–post questionnaires were available for 17 carers (one withdrew, two incomplete). Of the 29 goals set, 10 were achieved and 14 partially achieved. EQ‐5D‐3L scores were unchanged, while 7 of the 15 items comprising the Bakas score improved (p < 0.05). Carer service evaluation was generally favourable, and these two main interview themes were the impact of caring and pharmacy experience. The impact of caring, while variable, was significant. Pharmacy experiences were mostly positive and the opportunity for carers to further engage with pharmacy staff was appreciated. The service was feasible and initial reported benefits to carers may support further research potentially in terms of a larger controlled trial.     

Information‐sharing with respite care services for older adults: a qualitative exploration of carers' experiences

Respite services play an important role in supporting older adults and their carers. When an older person is unable to fully represent themselves, provision of respite care relies on effective information‐sharing between carers and respite staff. This study aimed to explore, from carers' perspectives, the scope, quality and fit of information‐sharing between carers, older people and respite services. An explorative, cross‐sectional qualitative study involving a purposive sample of 24 carers, recruited via carer support groups and community groups in voluntary organisations, was undertaken in North East Scotland. Data were collected from August 2013 to September 2014, with participants taking part in a focus group or individual interview. Data were analysed systematically using the Framework Approach. The multiple accounts elicited from carers identified how barriers and facilitators to information‐sharing with respite services changed over time across three temporal phases: ‘Reaching a point’, ‘Trying it out’ and ‘Settled in’. Proactive information‐sharing about accessibility and eligibility for respite care, and assessment of carers' needs in their own right, were initially important; as carers and older people moved on to try services out, time and space to develop mutual understandings and negotiate care arrangements came to the fore; then, once shared expectations had been established, carers' chief concerns were around continuity of care and maintaining good interpersonal relationships. The three temporal phases also impacted on which modes of information‐sharing were available to, and worked best for, carers as well as on carers' perceptions of how information and communication technologies should be utilised. This study highlights the need for respite staff to take proactive, flexible approaches to working with carers and to make ongoing efforts to engage with carers, and older people, throughout the months and years of them utilising respite services. Information and communication technologies have potential to enhance information‐sharing but traditional approaches will remain important.     

Public expenditure costs of carers leaving employment in England, 2015/2016

In the context of global population ageing, the reconciliation of employment and unpaid caring is becoming an important social issue. The estimation of the public expenditure costs of carers leaving employment is a valuable measure that is of considerable interest to policy makers. In 2012, the Personal Social Services Research Unit estimated that the public expenditure costs of unpaid carers leaving employment in England were approximately £1.3 billion a year, based on the costs of Carer's Allowance and lost tax revenues on forgone incomes. However, this figure was known to be an underestimate partly because it did not include other key benefits that carers who have given up work to care may receive. This paper presents a new estimate of the public expenditure costs of carers leaving employment. Key sources of information are the 2009/2010 Survey of Carers in Households, 2011 Census and 2015/2016 costs data. As well as Carer's Allowance, the estimate also now includes the costs of other benefits that carers leaving work may receive, namely, Income Support and Housing Benefit. The results show that the estimated numbers of carers who have left employment because of caring have increased from approximately 315,000 to 345,000. Due mainly to the inclusion of a wider range of benefits, the public expenditure costs of carers leaving employment in England are now estimated at £2.9 billion a year. The new estimate comprises £1.7 billion in social security benefits paid to people who have left their jobs because of unpaid caring, plus another £1.2 billion in taxes forgone on this group's lost earnings. The paper concludes that, if there was greater public investment in social care, such as “replacement care” to support carers in employment, and fewer carers then left employment, public spending on benefits would be lower and revenues from taxation would be higher.     

The physical functioning and mental health of informal carers: evidence of care‐giving impacts from an Australian population‐based cohort

Informal carers represent a substantial proportion of the population in many countries and health is an important factor in their capacity to continue care‐giving. This study investigated the impact of care‐giving on the mental and physical health of informal carers, taking account of contextual factors, including family and work. We examined health changes from before care‐giving commenced to 2 and 4 years after, using longitudinal data from the Household Income and Labour Dynamics in Australia survey. The sample comprised 424 carers and 424 propensity score‐matched non‐carers. Health was self‐assessed, measured with the SF‐36 Health Survey Mental Health (MH) and Physical Functioning (PF) scales. Care‐giving was classified as non‐carer, low (<5 hours/week), moderate (5–19 hours/week) and high (20 or more hours/week). PF and MH change scores were regressed on baseline scores, care‐giving, covariates (including work, family and socio‐demographic characteristics) and interactions to identify impacts for subgroups. The physical and mental health impacts differed by gender, and care‐giving hours and carer work hours were important contextual factors. Deterioration in both PF and MH was worse for females after 2 years and deterioration in MH was worse for males after 4 years. Among carers aged 40–64 years, there was a 17‐point decline in PF (P = 0.009) and a 14‐point decline in MH (P < 0.0001) after 2 years for female high caregivers working full‐time and 9.3 point improvement (P = 0.02) for non‐working male high caregivers. Change was not significant for non‐carers. The study found that not all carers suffer adverse health impacts; however, the combination of high levels of care‐giving with workforce participation can increase the risk of negative physical and mental health effects (particularly in female carers). Working carers providing high levels of care represent a vulnerable subgroup where supportive and preventive services might be focused.     

Support workers in intermediate care

Despite the proliferation of support worker roles in the UK, little is known about their actual numbers, employment conditions or levels of training. Intermediate care services appear to be an important employer of support workers, but the diversity of intermediate care services makes the task of understanding support worker roles even more complex. This paper presents data from 33 services which were involved in an NHS Modernisation Agency's Changing Workforce Programme project, the Accelerated Development Programme for Support Workers in Intermediate Care in England. Within this project, the main employers of support workers were primary care trusts and/or social services. Participating intermediate care teams were involved in admission avoidance, assisted discharge and reablement, or combinations of these services, and the majority of care was provided in the patient's own home. The 33 services employed 794 support workers and 368 professionally qualified staff. The mean ratio of professionally qualified staff to support workers was 0.95 (range = 0-4.9, SD = 1.05). Support worker roles included multidisciplinary working, meeting rehabilitation needs, providing personal care and enablement. Team leaders included nurses, social workers, physiotherapists, professional managers, home carers and support workers. The most commonly reported sources of support worker training were National Vocational Qualifications and in-house training. In 80% of the services, at least half of the support workers had a qualification. Three models of supervision emerged across the services: the allocation of a mentor; team supervision; and formal and informal line management. These findings illustrate the diversity of employment of support workers in intermediate care. The variations in training, supervision and skill mix have implications for clinical governance and support worker regulation. The employment of support worker staff jointly across health and social care raises cross-boundary issues around employment contracts and pay.     

The labour market costs of community care

This paper reports an empirical investigation into the influence of informal care responsibilities on the labour supply of women. The objective is to examine the argument that the UK policy of caring for the chronic sick 'in the community' involves a nontrivial opportunity cost in the form of the forgone labour supply of the informal carers upon which it relies. We find that informal carers who care for less than 20 h per week are, in fact, more likely to participate in the labour market, but tend to work for fewer hours per week than otherwise similar noncarers. Informal carers who care for 20 h or more a week are less likely to participate, but only slightly. However, when they do undertake formal employment, they tend to earn less per hour and work for fewer hours per week.