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.     

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.     

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.     

A qualitative exploration of oral health care among stroke survivors living in the community

BackgroundDental disease is highly prevalent in people with stroke. Stroke survivors regard oral hygiene as an important, yet neglected, area. The aim was to explore experiences of and barriers to oral care, particularly in relation to oral hygiene practice and dental attendance, among stroke survivors in the community.MethodsThis was a qualitative study incorporating a critical realist approach. Interviews were conducted with community‐dwelling stroke survivors requiring assistance with activities of daily living, and focus groups were held with health and care professionals. Interviews and focus groups were recorded and transcribed verbatim. Thematic analysis was conducted.ResultsTwenty‐three stroke survivors were interviewed, and 19 professionals took part in 3 focus groups. Professionals included nurses, speech and language therapists, occupational therapists, dieticians, professional carers and dental staff. Interviews revealed difficulties in carrying out oral hygiene self‐care due to fatigue, forgetfulness and limb function and dexterity problems. Routine was considered important for oral hygiene self‐care and was disrupted by hospitalization resulting from stroke. Professionals highlighted gaps in staff training and confidence in supporting patients with oral care. Access to dental services appeared particularly problematic for those who were not registered with a dentist pre‐stroke.ConclusionOral hygiene routines may be disrupted by stroke, and resulting disabilities may make regular oral self‐care more difficult. This study has identified specific barriers to oral hygiene self‐care and dental service access. Findings from this study are feeding into the development of an intervention to support stroke survivors with oral care.     

“Something that happens at home and stays at home”: An exploration of the lived experience of young carers in Western Australia

There are approximately 350,000 young carers in Australia, yet their experience is not well understood. Young carers face adversities and disenfranchisement by being a young person in a caring role, and the role can affect other areas of their lives. We explored the lived experiences of young carers, aged 14–25 years (N = 13), from Western Australia through in‐depth semi‐structured interviews. A phenomenological approach was adopted. A thematic analysis of the transcribed interview data revealed four key themes. “Lessons from the experience” articulates the perceived benefits of the role and the themes: “navigating competing demands,” “desire for normalcy” and “lost in the system” capture the struggles and complexities associated with being a young carer. Although there are challenges to being a young carer, it is something that young carers report can be beneficial and something that is done for those they love.     

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.     

The influence of communication and information sources upon decision‐making around complementary and alternative medicine use for back pain among Australian women aged 60–65 years

This study examined factors influencing decision‐making on complementary and alternative medicine (CAM) use for back pain and back pain sufferers' communication about CAM use. A cross‐sectional postal survey was conducted in 2011/2012 as a sub‐study of the Australian Longitudinal Study on Women's Health (ALSWH). The sample contained 1620 women from the 1945–1951 cohort of the ALSWH, aged 60–65 years who were eligible for the sub‐study, as they had experienced back pain during 12 months prior to the survey. Of these, 1310 (80.9%) returned completed questionnaires. A significant proportion of women consulted a CAM practitioner (76%, n = 1001) and/or had self‐prescribed CAM treatment (75%, n = 985). Of the women who used CAM for their back pain, 20% consulted their general practitioner (GP) prior to using CAM and 34% always informed their GP following CAM use. Forty‐three per cent of the women were influenced by their doctors, 39% by friends/colleagues, 36% by family/relatives, 33% by their partner, 30% by a CAM practitioner, 20% by a pharmacist, 16% by a book/magazine, 11% by mass media, 10% by an allied health worker and 6% by the Internet. Our results show that information sources used by women for their decision‐making on CAM use differed according to the symptoms. While non‐professional information sources (e.g. family/relatives) positively influenced women in their decision to use CAM for a range of back pain‐related symptoms (e.g. headaches/migraines), doctors and allied health workers (e.g. nurses) negatively influenced women in their decision to consult a CAM practitioner for a range of back pain‐related symptoms (e.g. headaches/migraines, neck pain). Women seek information from a wide range of professional and non‐professional sources with regard to their decision‐making around CAM use for back pain. Back pain care providers need to ensure effective communication with their back pain patients regarding safe, effective and co‐ordinated back pain care options.     

Long‐term Care Insurance and Carers' Labor Supply – A Structural Model

In Germany, individuals in need of long‐term care receive support through benefits of the long‐term care insurance. A central goal of the insurance is to support informal care provided by family members. Care recipients can choose between benefits in kind (formal home care services) and benefits in cash. From a budgetary perspective, family care is often considered a cost‐saving alternative to formal home care and to stationary nursing care. However, the opportunity costs resulting from reduced labor supply of the carer are often overlooked. We focus on the labor supply decision of family carers and the incentives set by the long‐term care insurance. We estimate a structural model of labor supply and the choice of benefits of family carers. We find that benefits in kind have small positive effects on labor supply. Labor supply elasticities of cash benefits are larger and negative. If both types of benefits increase, negative labor supply effects are offset to a large extent. However, the average effect is significantly negative. Copyright © 2015 John Wiley & Sons, Ltd.     

Mental health carers’ experiences of an Australian Carer Peer Support program: Tailoring supports to carers’ needs

Carer Peer Support Workers (CPSWs) are people who have lived experience as carers/family members of persons with a mental illness, and are employed to provide support to other carers/family members. This qualitative study aimed to explore carers’ experiences within a community‐based CPSW pilot program in an Australian mental health service. Semi‐structured phone interviews were conducted with 20 carer participants in 2015, 5–10 months following their last contact with the service. Thematic analysis uncovered that carers were generally positive about the CPSW's emotional support, practical support, shared lived experience and mutual understanding, and the “ripple effect” the support had on service users. Some carers, on the other hand, felt that the support was unnecessary; either because they believed that it did not have a lasting effect, the focus should have been on the service user, or that they had previously received enough support. Nevertheless, the study highlighted how mental health services could best utilise and benefit from CPSWs. Moreover, to be most useful, the nature of the carer peer support work should be tailored to the specific needs of the carers; which may vary according to their culture, years of caring experience, and previous experiences with mental health services.     

Nursing the patient with developmental disability in hospital: roles of paid carers

Our aim in this narrative inquiry was to understand the roles of paid carers supporting adults with developmental disability and complex communication needs in hospital, from the perspectives of 15 paid carers, 15 adults with developmental disability, and 15 hospital nurses. Results demonstrated that paid carers have an important role in supporting the adult with disability, providing information, delivering basic care, and facilitating communication. Stories reflected paid carer volunteerism; lack of orientation of carers and hospital staff to the paid carers' roles; blurred role boundaries between paid carers, family carers, and nurses; and paid carers being uncertain about their own responsibilities for staff and patient safety. New policies and practice guidelines are needed to guide both health and disability services in clarifying paid carer roles and role boundaries, and to enable paid carers and hospital staff to work together effectively on the ward in the care of adults with developmental disability.     

Hmong Adults Self-Rated Oral Health: A Pilot Study

Since 1975, the Hmong refugee population in the U.S. has increased over 200%. However, little is known about their dental needs or self-rated oral health (SROH). The study aims were to: (1) describe the SROH, self-rated general health (SRGH), and use of dental/physician services; and (2) identify the factors associated with SROH among Hmong adults. A cross-sectional study design with locating sampling methodology was used. Oral health questionnaire was administered to assess SROH and SRGH, past dental and physician visits, and language preference. One hundred twenty adults aged 18–50+ were recruited and 118 had useable information. Of these, 49% rated their oral health as poor/fair and 30% rated their general health as poor/fair. Thirty-nine percent reported that they did not have a regular source of dental care, 46% rated their access to dental care as poor/fair, 43% visited a dentist and 66% visited a physician within the past 12 months. Bivariate analyses demonstrated that access to dental care, past dental visits, age and SRGH were significantly associated with SROH (P < 0.05). Multivariate analyses demonstrated a strong association between access to dental care and good/excellent SROH. About half of Hmong adults rated their oral health and access to dental care as poor. Dental insurance, access to dental care, past preventive dental/physician visits and SRGH were associated with SROH.     

Access to therapy services for people with disability in rural Australia: a carers’ perspective

In Australia and around the world, people with disability and their carers living in rural areas face additional challenges compared to their urban‐dwelling counterparts. This cross‐sectional study explored current access to therapy services for people with disability living in western New South Wales as reported by their primary carers. Data were collected using an online and paper survey distributed to carers, from December 2012 until June 2013. Information was sought about the carers, the person they care for, access to physiotherapy, speech pathology, occupational therapy and psychology services. A total of 166 carers participated. Respondents were mostly the carers of a son or daughter (83.6%) , the person they care for had an average age of 17.6 years (range 1–69 years) and more than half were males (56%). The majority of people with disability (73.5%) had received therapy services in the last 2 years. Waiting time and distance travelled to access physiotherapy, speech and occupational therapy services varied. People with disability had to wait an average of 6.6 months to receive speech pathology and had to travel an average of 2.6 hours to receive physiotherapy. The main provider of all services was the specialist disability government department, except for psychology, which is mainly provided in the private sector. From the carers’ perspective, availability and accessibility to services are limited. Carers noted that availability of services was more restricted once people with disability reached adulthood. Lack of choice and frustration with the lack of availability of specialist disability services was reported frequently. Carers believed that timely allied health intervention prevented the development of more severe or complicated conditions that had a greater impact on carers, families, communities and the person with disabilities.     

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.     

Carer‐related research and knowledge: Findings from a scoping review

The review discussed in this paper provides a unique synthesis of evidence and knowledge about carers. The authors adopted a scoping review methodology drawing on a wide range of material from many different sources published between 2000 and 2016. It offers key insights into what we know and how we know it; reinforces and expands evidence about carers’ profile; shows knowledge is uneven, e.g. much is known about working carers, young carers and carers of people with dementia but far less is about older carers or caring for someone with multiple needs. A striking feature of much research is a focus on caring as a set of tasks, rather than a dimension of an, often dyadic, relationship. While there is substantive evidence about the negative impact of caring, the review suggests that links between caring and carer outcomes are neither linear nor inevitable and vary in depth and nature. A reliance on cross‐sectional studies using standardised measures is a major weakness of existing research: this approach fails to capture the multidimensionality of the caring role, and the lived experience of the carer. Although research relating to formal support suggests that specific interventions for particular groups of carers may be effective, overall the evidence base is weak. There is a tension between cost‐effectiveness and what is valued by carers. Developing robust evaluative models that accommodate this tension, and take account of the dyadic context of caring is a critical challenge. A fundamental deficit of carer‐related research is its location in one of two, largely separate, paradigmatic frameworks: the “Gatherers and Evaluators” and the “Conceptualisers and Theorisers.” The authors suggest that developing an integrated paradigm that draws on the strengths and methods of existing paradigms, has considerable potential to generate new knowledge and new evidence and extend understanding of care and caring.     

Caring for children with physical disability in Kenya: potential links between caregiving and carers' physical health

Background The health of a carer is a key factor which can affect the well‐being of the child with disabilities for whom they care. In low‐income countries, many carers of children with disabilities contend with poverty, limited public services and lack assistive devices. In these situations caregiving may require more physical work than in high‐income countries and so carry greater risk of physical injury or health problems. There is some evidence that poverty and limited access to health care and equipment may affect the physical health of those who care for children with disabilities. This study seeks to understand this relationship more clearly. Methods A mixed methods study design was used to identify the potential physical health effects of caring for a child with moderate‐severe motor impairments in Kilifi, Kenya. Qualitative data from in‐depth interviews were thematically analysed and triangulated with data collected during structured physiotherapy assessment. Results Carers commonly reported chronic spinal pain of moderate to severe intensity, which affected essential activities. However, carers differed in how they perceived their physical health to be affected by caregiving, also reporting positive benefits or denying detrimental effects. Carers focussed on support in two key areas; the provision of simple equipment and support for their children to physically access and attend school. Conclusions Carers of children with moderate‐severe motor impairments live with their own physical health challenges. While routine assessments lead to diagnosis of simple musculoskeletal pain syndromes, the overall health status and situation of carers may be more complex. As a consequence, the role of rehabilitation therapists may need to be expanded to effectively evaluate and support carers' health needs. The provision of equipment to improve their child's mobility, respite care or transport to enable school attendance is likely to be helpful to carers and children alike.     

Cohort study of informal carers of first-time stroke survivors: Profile of health and social changes in the first year of caregiving

Informal carers underpin community care policies. An initial cohort of 105 informal live-in carers of new stroke patients from the South Coast of England was followed up before discharge, six weeks after discharge and 15 months after stroke with face-to-face interviews assessing physical and psychological health, and social wellbeing. The carer cohort was compared to a cohort of 50 matched non-carers over the same time period. Carer distress was common (37–54%), started early on in the care-giving experience and continued until 15 months after stroke. Carers were 2.5 times as likely as non-carers to have significant psychological distress. Presence of early distress predicted 90% of those significantly distressed 15 months after stroke. Female carers were likely to develop distress earlier than male carers and in anticipation of the care-giving situation. Male carers developed similar levels of distress but only once the care-giving situation became reality. Further research is needed to establish ways to screen for psychological distress early after onset of caregiving, to find ways to tailor proven support interventions to the individual carer, and to evaluate the effect of early detection and support provision on later carer distress.     

What do we know about older former carers? Key issues and themes

Despite a significant growth in the number older former family carers, they remain largely invisible in carer‐related research and literature. To begin to address this deficit, a four‐stage literature review was conducted to identify existing knowledge about older former carers. Narrative synthesis of the findings yielded five themes – the concept of ‘older former carer’, the legacies of caring, influences on the legacies of caring, conceptualising post‐caring and support services for older former carers. Critical analysis of these findings suggests that existing evidence has a number of strengths. It highlights the terminological and conceptual confusion in the field, identifies the profound financial and health‐related legacies older former carers’ experience, the factors which shape these legacies and some of the complexities of bereavement older former carers face. The support needs of older former carers are also illuminated. However, the field is characterised by key weaknesses. The evidence base is fragmented and uneven. In part this reflects lack of definitional consensus and in part the fact that there is much more evidence about some sub‐groups, such as carers of relatives admitted to a care home, than others. Methodology‐related weaknesses include small sample sizes and a focus on a single, often condition‐specific, group of older former carers. An overarching criticism relates to the narrow conceptual/theoretical purview. As post‐caring tends to be viewed as one of the final temporal ‘stages’ of the carer's ‘care‐giving career’, a bifurcatory model of carer/former carer is created, i.e. that a carer actively provides care and a former carer is no longer caring. This constructs being a former carer – namely formerality – as a single fixed state failing to capture its dynamic and shifting nature and constrains the potential of research to generate new knowledge and extend understanding.     

Self‐reported health,healthcare service use and health‐related needs: A comparison of older and younger homeless people

The number of older homeless people with a limited life expectancy is increasing. European studies on their health‐related characteristics are lacking. This study compared self‐reported health, healthcare service use and health‐related needs of older and younger homeless people in the Netherlands. It is part of a cohort study that followed 513 homeless people in the four major Dutch cities for a period of 2.5 years, starting from the moment they registered at the social relief system in 2011. Using cross‐sectional data from 378 participants who completed 2.5‐year follow‐up, we analysed differences in self‐reported health, healthcare service use, and health‐related needs between homeless adults aged ≥50 years (N = 97) and <50 years (N = 281) by means of logistic regression. Results show that statistically significantly more older than younger homeless people reported cardiovascular diseases (23.7% versus 10.3%), visual problems (26.8% versus 14.6%), limited social support from family (33.0% versus 19.6%) and friends or acquaintances (27.8% versus 14.6%), and medical hospital care use in the past year (50.5% versus 34.5%). Older homeless people statistically significantly less often reported cannabis (12.4% versus 45.2%) and excessive alcohol (16.5% versus 27.0%) use in the past month and dental (20.6% versus 46.6%) and mental (16.5% versus 25.6%) healthcare use in the past year. In both age groups, few people reported unmet health‐related needs. In conclusion, compared to younger homeless adults, older homeless adults report fewer substance use problems, but a similar number of dental and mental problems, and more physical and social problems. The multiple health problems experienced by both age groups are not always expressed as needs or addressed by healthcare services. Older homeless people seem to use more medical hospital care and less non‐acute, preventive healthcare than younger homeless people. This vulnerable group might benefit from shelter‐based or community outreach programmes that proactively provide multidisciplinary healthcare services.     

‘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.