Challenges of combining work and unpaid care,and solutions: A scoping review

The number of people who combine work and unpaid care is increasing rapidly as more people need care, public and private care systems are progressively under pressure and more people are required to work for longer. Without adequate support, these working carers may experience detrimental effects on their well‐being. To adequately support working carers, it is important to first understand the challenges they face. A scoping review was carried out, using Arksey and O’Malley's framework, to map the challenges of combining work and care and solutions described in the literature to address these challenges. The search included academic and grey literature between 2008 and 2018 and was conducted in April 2018, using electronic academic databases and reference list checks. Ninety‐two publications were mapped, and the content analysed thematically. A conceptual framework was derived from the analysis which identified primary challenges (C1), directly resulting from combining work and care, primary solutions (S1) aiming to address these, secondary challenges (C2) resulting from solutions and secondary solutions (S2) aiming to address secondary challenges. Primary challenges were: (a) high and/or competing demands; (b) psychosocial/‐emotional stressors; (c) distance; (d) carer's health; (e) returning to work; and (f) financial pressure. This framework serves to help those aiming to support working carers to better understand the challenges they face and those developing solutions for the challenges of combining work and care to consider potential consequences or barriers. Gaps in the literature have been identified and discussed.     

"We need to talk": a study of working relationships between field social workers and fostering link social workers in Northern Ireland

Foster care in the United Kingdom and Northern Ireland has been in crisis throughout the past decade. This is most clearly demonstrated in the shortage of placements for children. The difficulty in recruiting new carers has taken a new significance for most agencies that struggle with more referrals than placements. As it becomes more difficult to recruit new carers, it becomes essential to retain existing carers.

This research has focused on the working relationships between field workers and link workers and the role these relationships play in supporting carers. Previous research by the author (Sheldon, 2002) has indicated that carers wish to be treated with respect and as partners in a process of caring for children. It follows, therefore, that when social workers fail to work in this way carers become dissatisfied and this may lead to them ceasing to foster.

The study was carried out via a postal questionnaire to all 80 field and link social workers within South and East Belfast Health and Social Services Trust, and this was followed by a series of 13 face-to-face interviews, nine with field workers and four with link workers.

The results of the research have indicated a mixed picture of practice within the Trust. Foster carers are unanimously held in high regard by social workers and the task they fulfil is highly valued. There are many examples of successful working practices between field and link workers, but there are also examples of little or no communication. Many field workers have little idea of the problems facing fostering at the moment and this can be frustrating for their link work colleagues. New social workers have little or no preparation for working with carers and there is confusion as to the nature of the working relationship with them.     

‘A fifty mile round trip to change a lightbulb’: An exploratory study of carers’ experiences of providing help,care and support to families and friends from a distance

While the role of carers has been widely investigated, the experiences of those who care from a distance have been little explored, especially in the United Kingdom. However, contemporary patterns of family life suggest that this may be a significant experience for many. This exploratory study employed an anonymous online survey, conducted April–November 2017, to collect data about specific issues (experiences, challenges and satisfactions) faced by carers living at a distance requiring at least 1 hr travel time (each way) from the person they support. One hundred and twenty‐eight participant responses were analysed. Qualitative (thematic) analysis identified that ‘distance carers’ carry out multiple care tasks, both when with, and apart from, the person they care for. Distance creates specific challenges for carers who have to work to ‘bridge the distance gap’ and who cannot ‘just drop in’ and see the person they support. Distance further exposes carers to emotional, financial and temporal demands. The use of technologies or the availability of a wider support network may support distance carers, and some explore the viability of relocation. However, these potential support strategies were identified as ‘fragile’ and at risk of breaking down. Despite the challenges identified, distance carers also reported satisfactions derived from supporting their relative/friend. While the numbers of those providing distance care are unknown, this research suggests that this is a significant carer group, whose needs should be recognised in health and social care policy, practice and research.     

Use of quality information in decision‐making about health and social care services – a systematic review

User choice and personalisation have been at the centre of health and social care policies in many countries. Exercising choice can be especially challenging for people with long‐term conditions (LTC) or disabilities. Information about the quality, cost and availability of services is central to user choice. This study used systematic review methods to synthesise evidence in three main areas: (i) how people with LTC or disabilities and their family carers find and access information about the quality of services; (ii) how quality information is used in decision‐making; and (iii) what type of quality information is most useful. Quality information was defined broadly and could include formal quality reports (e.g. inspection reports, report cards, etc.), information about the characteristics of a service or provider (e.g. number and qualifications of staff, facilities, etc.) and informal reports about quality (e.g. personal experience, etc.). Literature searches were carried out using electronic databases in January 2012. Thirteen papers reporting findings from empirical studies published between 2001 and 2012 were included in the review. The majority of papers (n = 9) had a qualitative design. The analysis highlighted the use of multiple sources of information in decision‐making about services and in particular the importance of informal sources and extended social networks in accessing information. There is limited awareness and use of ‘official’ and online information sources. Service users or family carers place greater emphasis on general information and structural indicators. Clinical or quality‐of‐life outcomes are often difficult to interpret and apply. Trust emerged a key issue in relation to quality information. Experiential and subjective information is highly valued and trusted. Various barriers to the effective use of quality information in making choices about services are identified. Implications for policy and future research are discussed.     

Social work, general practice and evidence-based policy in the collaborative care of older people: current problems and future possibilities

While collaborative (or joint) working between social services and primary healthcare continues to rise up the policy agenda, current policy is not based on sound evidence of benefit to either patients or the wider community. Both sets of practitioners report benefits for their own work from adopting new arrangements for collaboration. The underlying assumption behind much of this activity is that a greater degree of integration provides benefits to both users and their carers, a perspective that at times obscures the issue of resource availability, especially in the form of practical community services such as district nursing and home help. At the present time there is insufficient evidence to demonstrate that formal arrangements for collaborative working (CW) are better than those forged informally between committed individuals or teams. Furthermore, arrangements for CW have not hitherto been widely evaluated in systematic studies with a comparative design and focus on outcomes for users and carers rather than on processes. In this paper we propose a number of process measures for future evaluation of CW: (1) study populations must be comparable; (2) details of how services are actually delivered must be obtained and colocation should not be assumed to mean collaboration; (3) care packages in areas of comparable resources should be examined; (4) both destinational outcomes and user‐defined evaluations of benefit should be considered; (5) possible disadvantages of integrated care also need to be actively considered; (6) evaluations should include an economic analysis. Those implementing new policies in Primary Care Trusts have, at present, little sound evidence to guide them in their innovative work. However, they should take the opportunity to rigorously test the advantages and disadvantages of collaboration.     

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.     

'We didn't know it would get that bad': South Asian experiences of dementia and the service response

The aim of the present paper was to examine some views and experiences of dementia among older South Asian people, as well as their families and carers, and to explore central issues of service support. Data were collected in Scotland through interviews with 11 professionals working with South Asian people with dementia, and four case studies of South Asian people with a diagnosis of dementia, as well as their families and carers. The case studies demonstrated overwhelmingly negative experiences of dementia, with poor quality of life, desperate needs for support, lack of access to appropriate services, little knowledge of dementia, and isolation from community and family life. The interviews with professionals described a strong demand for services, a need to develop awareness and knowledge about dementia in South Asian communities, and a need to promote more culturally sensitive, individually responsive services. Similarities between South Asian people and the non-South Asian population include stress on carers, increasing isolation, problematic diagnostic practices, lack of knowledge and demand for service support. Differences include limited use of non-National Health Service (NHS) support, dealing with later stages of dementia at home, particularly negative views about residential care, culturally based attitudinal differences and use of the term 'dementia' in English as neutral rather than stigmatising. The present authors suggest that there is little knowledge and experience of dementia in South Asian communities, as well as restricted access to appropriate services, despite the efforts of voluntary sector and NHS special projects. There is demand for services, especially at home. Services need to develop individual responsiveness for effective working in a diverse society.     

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.     

Inclusion of Carer Health-Related Quality of Life in National Institute for Health and Care Excellence Appraisals

ObjectivesHealth interventions for patients can have effects on their carers too. For consistency, decision makers may wish to specify whether carer outcomes should be included. One example is the National Institute for Health and Care Excellence (NICE), whose reference case specifies that economic evaluations should include direct health effects for patients and carers where relevant. We aimed to review the methods used in including carer health-related quality of life (HRQL) in NICE appraisals.MethodsWe reviewed all published technology appraisals (TAs) and highly specialized technologies (HSTs) to identify those that included carer HRQL and discussed the methods and data sources.ResultsTwelve of 414 TAs (3%) and 4 of 8 HSTs (50%) included carer HRQL in cost-utility analyses. Eight were for multiple sclerosis, the remainder were each in a unique disease area. Twelve of the 16 appraisals modeled carer HRQL as a function of the patient’s health state, 3 modeled carer HRQL as a function of the patient’s treatment, and 1 included family quality-adjusted life year (QALY) loss. They used 5 source studies: 2 compared carer EQ-5D scores with controls, 2 measured carer utility only (1 health utilities index and 1 EQ-5D), and 1 estimated family QALY loss from a child’s death. Two used disutility estimates not from the literature. Including carer HRQL increased the incremental QALYs and decreased incremental cost-effectiveness ratios in all cases.ConclusionsThe inclusion of carer HRQL in NICE appraisals is relatively uncommon and has been limited by data availability.     

New technologies for making vaccines

Technologies for making active vaccines fall into 3 general groups: live, subunit (killed or inactivated) and genetic. Each of these groups is further divisible into multiple categories, which include recombinant-derived antigens as well as native microorganisms and their components. In addition, there are new enabling technologies such as delivery systems and vectors which can be applied to these approaches. Most disease targets, whether infectious or noninfectious in origin, can be approached by the application of several different vaccine technologies, as can be tested during the discovery phase of research. The criteria for choosing early in a development program which of the vaccine technologies are likely to ultimately be most fruitful for a given application include: knowledge of the pathogenesis of the given infection/disease; technical feasibility; immunobiology and associated mechanisms; preclinical efficacy profile; anticipated clinical safety; regulatory; manufacturing; and marketing. All of these criteria should be considered together in making selections for an R&D program. This paper is reviewing the major vaccine technologies and relevant examples of how these criteria are used to make decisions in vaccine development.     

'Out of Hospital': a scoping study of services for carers of people being discharged from hospital

Successive government policies have highlighted the need to inform and involve carers fully in the hospital discharge process. However, some research suggests that many carers feel insufficiently involved and unsupported in this process. This paper summarises a scoping review to identify what the UK literature tells us about the service provision for carers, and its effectiveness, around the time of hospital discharge of the care recipient, and also describes a mapping exercise of the work currently being done by Princess Royal Trust for Carers Centres in England to support carers around the time of hospital discharge. The restriction to UK literature was dictated by the nature of the project; a modest review carried out for a UK-based voluntary sector organization. Fifty-three documents were reviewed, of which 19 papers (representing 17 studies) were reporting on primary research. As only five of these studies actually involved an intervention, it appears there is very little research from the UK which evaluates specific interventions to support carers around the time of hospital discharge of the care recipient. While the mapping exercise showed that in some areas there are services and/or initiatives in place which have been designed to improve the process of discharge for carers, in many places there is still a gap between what policy and research suggest should happen and what actually happens to carers at this time. Even where services and initiatives to support carers through the discharge process exist, there is only limited evidence from research or evaluation to demonstrate their impact on the carer's experience. Further research, both quantitative and qualitative, is required to address these areas and enable commissioners, providers and carers' organizations to work together towards a service in which patients and carers alike receive the support and help they need at this significant time of transition.     

People into Employment: supporting people with disabilities and carers into work

Carers and people with disabilities are two disadvantaged groups at risk of social exclusion. Work is an important route to social inclusion, but carers and people with disabilities are under-represented in the work force. The present paper reports key findings from a new study that evaluated People into Employment (PIE), a pilot employment project in the north-east of England designed to support people with disabilities, carers and former carers in gaining mainstream work. The study aimed to identify what clients, partner agencies and employers perceived to be PIE's most important services, its strengths and areas where there was scope for further development. The study collected quantitative and qualitative data at the mid-point and at the end of the project through two questionnaire surveys, and interviews with PIE clients, the project development officer, partner agencies and employers. Drawing on the 'pathway model', the findings show that PIE's interventions included mobilising, matching, mediating and supporting activities. Key ingredients in PIE's success include: tailor-made job-search activities and training; adjusting the pace at which people move towards sustained employment; recognising and responding to the differing needs of people with disabilities, carers and former carers; confidence boosting; accompanying clients to job interviews; good job matching; and ongoing practical and emotional support for both clients and employers. Rudimentary calculations suggest that the cost per job to the project is less than the cost per job for large national projects. Overall, these findings illustrate how access to employment via flexible job-search services geared up to the local labour market can successfully promote social inclusion for carers and people with disabilities.     

Perceptions of unmet needs for community social care services in England. A comparison of working carers and the people they care for

Previous UK research has found expressed unmet need for services by unpaid working carers and among disabled and older people. There are, however, suggestions from research that views on unmet needs for services differ between carers and care‐recipients. Working carers in the UK say that the care‐recipient is sometimes reluctant to accept services and the few international comparative dyad studies that have been carried out find that carers perceive higher unmet need than care‐recipients. Recent policy discussions in England have also recognised that there may be differences of opinion. We collected data in 2013 from working carer/care‐recipient dyads in England about perceived need for services for the care‐recipient, disability, unpaid care hour provision and individual and socio‐demographic characteristics. We find that care‐recipients as well as their carers perceive high unmet need for services, although carers perceive higher unmet need. For carers, unmet need is associated with the disability of the carer‐recipient and being the daughter or son of the care‐recipient; for care‐recipients it is associated with unpaid care hours, carers’ employment status and carers’ health. The majority of dyads agree on need for services, and agreement is higher when the working carer provides care for 10 hours or more hours a week. Services for care‐recipients may enable working carers to remain in employment so agreement on needs for services supports the implementation of legislation, policy and practice that has a duty to, or aims to, support carer's employment.     

Examples of the influence of evaluation on health policy.

Regulation strategies for controlling hospital costs are widely discussed today and medical technology assessment is one of these strategies. A Committee for Evaluation of the Diffusion of Innovative Technologies (CEDIT) was created in 1982 at the 'Assistance Publique de Paris', the most important health care institution in France. The CEDIT makes recommendations to the Director General on the use of new technologies. Since 1982, more than 50 medical technologies have been studied by the CEDIT: procedures such as plasmapheresis, bone marrow transplantation and percutaneous transluminal angioplasty; equipment such as lasers and the lithotriptor. The CEDIT helps planners who have to make difficult choices.     

Changes in daily occupations and the meaning of work for three women caring for relatives post-stroke

Abstract

Study aim: This qualitative study explored how some working Austrians experienced and coped with changes in their daily occupations after becoming informal carers of persons who had had a stroke. The study provides insights into the working carers' occupational experiences and strategies during a period of pronounced life changes. Methods: Three participants, who were employed in full- or part-time work, as well as being informal carers of persons who had had a stroke, were interviewed on two occasions. The data from these interviews were analysed using Interpretative Phenomenological Analyses. Results: Carers found themselves in an ongoing process, ranging from the disruption of daily occupations to their eventual restructure. First, the stroke led to involuntary changes in the carers' daily life, which resulted in challenges in their own, and in shared, occupations. Second, carers actively changed their values and performance of occupations, which appeared to be a strategy to shape their well-being. Paid work was found to be a stabilizing and balancing occupation, which contributed to coping and the well-being of carers. Conclusions: The authors' findings demonstrate the benefits of paid work and engagement in meaningful occupation for the carers' well-being. These results should encourage occupational therapists to be sensitive to the complexity of the lives of working informal carers.     

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.     

Hybrid bodies and the materiality of everyday life: how people living with pacemakers and defibrillators reinvent everyday routines and intimate relations

Technologies inside bodies pose new challenges in a technological culture. For people with pacemakers and defibrillators, activities such as passing security controls at airports, using electromagnetic machines, electrical domestic appliances and electronic devices, and even intimate contacts with their loved ones can turn into events where the proper functioning of their device may be at risk. Anticipation of potentially harmful events and situations thus becomes an important part of the choreography of everyday life. Technologies inside bodies not only pose a challenge for patients living with these devices but also to theorising body‐technology relations. Whereas researchers usually address the merging of bodies and technologies, implants ask us to do the opposite as well. How are we to understand human‐technology relations in which technologies should not entangle with bodies because they serve other purposes? Based on a study of the daily life practices of people with pacemakers and defibrillators in the Netherlands and the US, I argue that disentanglement work, i.e. work involved to prevent entanglements with objects and people that may inflict harm upon implanted devices, is key to understanding how hybrid bodies can survive in today's densely populated technological landscape.     

Missed opportunities for tobacco use screening and brief cessation advice in South African primary health care: a cross-sectional study

Background

Approximately one in ten of the UK population are unpaid carers supporting a family member or friend who could not manage without their help, saving the UK economy an estimated £87 billion. This role is known to sometimes have a negative impact on carers and to require support both informally and from statutory services. General practice is a first point of contact for carers but research investigating general practitioners' (GPs') attitudes towards carers and awareness of issues facing carers is rare. This study therefore aimed to identify GPs' attitudes, awareness of issues, and perceptions of the barriers and enablers to provision of services.

Methods

Using a self-completion questionnaire distributed at a series of workshops, this study investigates GPs' attitudes to carers; awareness and knowledge of carers' issues; services offered in general practice and barriers to supporting carers.

Results

Seventy eight out of a total of 95 GPs (82% response rate) from a variety of areas in England completed the questionnaires. The GPs identified time, resources and lack of knowledge as barriers, but only 9% agreed with the statement that there is little support they can offer carers. However, nine in ten GPs (89%) feel they have insufficient training here and approximately half of them (47%) lack confidence that they are meeting carers' needs. Confidence in identifying carers is also low (45%). Issues that GPs would look out for amongst carers include emotional and physical health problems and financial and isolation difficulties. GPs specifically highlighted educational and isolation issues for young carers. Few services were described that targeted carers.

Conclusions

GPs recognise that they have an important role to play in supporting carers but would like training and support. Further investigation is needed both to determine how best to train and facilitate GPs and general practice teams in their role in supporting carers and to identify what carers need and want from general practice. Identifying carers' leads or carers' champions amongst practice staff is possibly one way forward. Given the proposed greater commissioning role for primary care, greater understanding here is particularly important.