Formal and informal care for community‐dwelling frail elderly people over time: A comparison of integrated and usual care in the Netherlands

While integration has become a central tenet of community‐based care for frail elderly people, little is known about its impact on formal and informal care and their dynamics over time. The aim of this study was therefore to examine how an integrated care intervention for community‐dwelling frail elderly people affects the amount and type of formal and informal care over 12 months as compared to usual care. A quasi‐experimental design with a control group was used. Data regarding formal and informal care were collected from frail elderly patients (n = 207) and informal caregivers (n = 74) with pre/post‐questionnaires. Within‐ and between‐group comparisons and multiple linear regression analyses were performed. The results showed marginal changes over time in the amount of formal and informal care in both integrated care and usual care. However, different associations between changes in formal and informal care were found in integrated and usual care. Most notably, informal caregivers provided more instrumental assistance over time if formal caregivers provided less personal care (and vice versa) in integrated care but not in usual care. These results suggest that integrated care does not necessarily change the contribution of formal or informal care, but changes the interaction between formal (personal care) and informal (instrumental) activities. Implications and recommendations for research and practice are discussed. Trial registration: Current Controlled Trials ISRNT05748494.     

Relational aspects of mastery for frail,older adults: The role of informal caregivers in the care process

Frail, older care recipients are often thought of as individuals with a decreased mastery of everyday life skills. Various authors have proposed to acknowledge a relational dimension of mastery, defined as the ability to maintain control over one's life with the help of others. This study explores how frail, older adults experience relational aspects of mastery and the role of their informal caregivers in maintaining these aspects of mastery over the care process. Qualitative interviews (N = 121) were conducted in 2016 with potentially frail, community‐dwelling older adults participating in the Detection, Support and Care for Older people: Prevention and Empowerment (D‐SCOPE) project. A secondary analysis of 65 interviews reveals that, according to frail, older adults, informal caregivers contribute in various ways to the preservation of their mastery. This differs across the four elements of care: caring about (attentiveness), taking care of (responsibility), care‐giving (competence), and care‐receiving (responsiveness). However, in some cases, older adults experienced a loss of mastery; for example, when informal caregivers did not understand their care needs and did not involve them in the decision, organisation, and provision of care. A relational dimension of mastery needs to be acknowledged in frail, older care recipients since stimulating mastery is a crucial element for realising community care objectives and person‐centred and integrated care.     

Formal home‐care utilisation by older adults in Ireland: evidence from the Irish Longitudinal Study on Ageing (TILDA)

The aim of this study was to provide a population‐based estimate of the utilisation of publicly financed formal home care by older adults in Ireland and to identify the principal characteristics of those utilising formal home care. Data were collected through computer‐aided personal interviews from a representative sample of community living older adults in Ireland. The interviews were conducted between 2009 and 2011 as part of the first wave of the Irish Longitudinal Study on Ageing (TILDA). The study is cross‐sectional in design and limited to participants aged 65 years and older (n = 3507). Results reveal that 8.2% (95% CI 7.1%–9.3%) of participants utilised publicly financed formal home care in the form of home help and/or personal care. Key determinants of formal home‐care utilisation were Instrumental Activity of Daily Living (IADL) difficulty (Adj OR 3.8, 95% CI 2.7–5.3), older age (Adj OR 3.4, 95% CI 2.4–4.8) and living alone (Adj OR 2.6, 95% CI 1.9–3.8). Almost half of those utilising formal care did not self‐report an Activity of Daily Living (ADL) difficulty or an IADL difficulty. Government policy aims to reduce the need for long‐term residential care by providing formal home care for older adults with low to moderate levels of dependency. This requires an increasing emphasis on personal care provision in the home. No evidence was found in this study to suggest that a shift in emphasis from formal domestic to personal care is taking place in Ireland. The absence of standardised assessment and eligibility criteria are deemed to be barriers to reorientation of the system. From a health services perspective, the current situation is not sustainable into the future and requires a focused policy response.     

Investigating the relationship between formal and informal care: An application using panel data for people living together

There is limited evidence on the relationship between formal and informal care using panel data in a U.K. setting and focused specifically on people living together (co‐residents). Using all 18 waves of the British Household Panel Survey (1991–2009), we analyse the effect of informal care given by co‐residents on the use of formal home care and health care services more generally. To account for endogeneity, we estimate models using random effects instrumental variable regression using the number of daughters as a source of exogenous variation. We find that a 10% increase in the monthly provision of informal care hours decreases the probability of using home help (formal home care) by 1.02 percentage points (p < .05), equivalent to a 15.62% relative reduction. This effect was larger for home help provided by the state (β = ?.117) compared with non‐state home help (β = ?.044). These results provide evidence that significant increases in the supply of informal care would reduce the demand for home‐help provision.     

Mixed care networks of community‐dwelling older adults with physical health impairments in the Netherlands

As part of long‐term care reforms, home‐care organisations in the Netherlands are required to strengthen the linkage between formal and informal caregivers of home‐dwelling older adults. Information on the variety in mixed care networks may help home‐care organisations to develop network type‐dependent strategies to connect with informal caregivers. This study first explores how structural (size, composition) and functional features (contact and task overlap between formal and informal caregivers) contribute to different types of mixed care networks. Second, it examines to what degree these network types are associated with the care recipients' characteristics. Through home‐care organisations in Amsterdam, the Netherlands, we selected 74 frail home‐dwelling clients who were receiving care in 2011–2012 from both informal and formal caregivers. The care networks of these older adults were identified by listing all persons providing help with five different types of tasks. This resulted in care networks comprising an average of 9.7 caregivers, of whom 67% were formal caregivers. On average, there was contact between caregivers within 34% of the formal–informal dyads, and both caregivers carried out at least one similar type of task in 29% of these dyads. A principal component analysis of size, composition, contact and task overlap showed two distinct network dimensions from which four network types were constructed: a small mixed care network, a small formal network, a large mixed network and a large formal network. Bivariate analyses showed that the care recipients’ activities of daily living level, memory problems, social network, perceived control of care and level of mastery differed significantly between these four types. The results imply that different network types require different actions from formal home‐care organisations, such as mobilising the social network in small formal networks, decreasing task differentiation in large formal networks and assigning co‐ordination tasks to specific dyads in large mixed care networks.     

Social participation among older adults (55+): Results of a survey in the region of South Limburg in the Netherlands

Social participation may improve the health and well‐being of older adults, and may increase the social and human capacity of their communities. This study investigates the level and forms of social participation among older adults (aged 55 years or older) in the region of South Limburg, the Netherlands, and their association with socio‐demographic and health‐related characteristics. The study provides evidence that can be used by policy makers to enhance social participation in the region. We use cross‐sectional data collected in a survey in 2012 among a sample of older adults (aged 55 years or older) representative for the region of South Limburg. The results indicate that 56% (N = 16,291/weighted sample N = 213,332) of the older adults in the region participate in social activities. Specifically, 25.5% perform paid labour, 20% give informal care and 25% participate in volunteer work. Older adults with a higher education (OR = 2.49 for the highest education group) or higher income (OR = 1.70 for the highest income group) are significantly more likely to participate in social activities compared with the respective reference categories. Increased age (OR = 0.23 for the oldest age group), female gender (OR = 0.83), loneliness (OR = 0.75 for severe loneliness) and restrictions (OR = 0.78 for restrictions on the OECD scale, OR = 0.68 for restrictions on the HDL scale, OR = 0.52 for transportation restrictions) significantly hinder social participation. The lower social participation rate among older adults that we observe compared with the national statistics can be explained by the relatively higher proportion of people with low or average socioeconomic status in South Limburg. And as South Limburg is the unhealthiest region of the Netherlands, this also contributes to the low social participation. Prevention of poor physical and mental health, and provision of care services are important to encourage social participation among the older adults in South Limburg.     

The role of social networks in using home care by older people across Continental Europe

The diversification of caregiving arrangements in European societies has drawn attention to the factors that condition the use of care by older people. Social and family relations appear as a key factor, mainly to be related to the availability and accessibility to potential informal caregivers. Recent studies evidenced that geographical proximity and a larger social network increase the probability of receiving informal support in old age. However, the ways in which interpersonal relationships are associated with the use of formal care, as well as the cross‐country variability of this association, have been barely explored. Using a sample of 37,708 individuals aged 65 and over from Wave 6 of the Survey of Health, Ageing and Retirement in Europe (SHARE), this study examines to what extent the characteristics of older people's social networks predict the use of three types of home care; formal, informal, or combined, exploring the cross‐European convergences and divergences. Binomial logistic regressions are conducted to compare four macro‐regions in continental Europe (northern countries: Denmark and Sweden; western countries: Austria, Belgium, France, Germany, Switzerland, and Luxembourg; southern countries: Italy, Spain, Greece, and Portugal; and eastern countries: Poland, Czech Republic, Slovenia, Estonia, and Croatia). The structure, availability, and accessibility to the members of the social network are the major predictors of the receipt of informal care everywhere. Regional divergences are observed regarding to formal care, alone or combined with informal caregivers.     

It ‘makes you feel more like a person than a patient’: patients’ experiences receiving home‐based primary care (HBPC) in Ontario,Canada

The lack of effective systems to appropriately manage the health and social care of frail older adults – especially among those who become homebound – is becoming all the more apparent. Home‐based primary care (HBPC) is increasingly being promoted as a promising model that takes into account the accessibility needs of frail older adults, ensuring that they receive more appropriate primary and community care. There remains a paucity of literature exploring patients' experiences with HBPC programmes. The purpose of this study was to explore the experiences of patients accessing HBPC delivered by interprofessional teams, and their perspectives on the facilitators and barriers to this model of care in Ontario, Canada. Using certain grounded theory principles, we conducted an inductive qualitative content analysis of in‐depth patient interviews (n = 26) undertaken in the winter of 2013 across seven programme sites exploring the lived experiences and perspectives of participants receiving HBPC. Themes emerged in relation to patients' perceptions regarding the preference for and necessity of HBPC, the promotion of better patient care afforded by the model in comparison to office‐based care, and the benefits of and barriers to HBPC service provision. Underlying patterns also surfaced related to patients' feelings and emotions about their quality of life and satisfaction with HBPC services. We argue that HBPC is well positioned to serve frail homebound older adults, ensuring that patients receive appropriate primary and community care – which the office‐based alternative provides little guarantee – and that they will be cared for, pointing to a model that may not only lead to greater patient satisfaction but also likely contributes to bettering the quality of life of a highly vulnerable population.     

Multimorbidity Patterns and 6-Year Risk of Institutionalization in Older Persons: The Role of Social Formal and Informal Care

ObjectivesThe aim was to evaluate patterns of multimorbidity that increase the risk of institutionalization in older persons, also exploring the potential buffering effect of formal and informal care.DesignProspective cohort study.Setting and ParticipantsThe population-based Swedish National study on Aging and Care in Kungsholmen, Stockholm, Sweden.MeasuresIn total, 2571 community-dwelling older adults were grouped at baseline according to their underlying multimorbidity patterns, using a fuzzy c-means cluster algorithm, and followed up for 6 years to test the association between multimorbidity patterns and institutionalization.ResultsSix patterns of multimorbidity were identified: psychiatric diseases; cardiovascular diseases, anemia, and dementia; metabolic and sleep disorders; sensory impairments and cancer; musculoskeletal, respiratory, and gastrointestinal diseases; and an unspecific pattern including diseases of which none were overrepresented. In total, 110 (4.3%) participants were institutionalized during the follow-up, ranging from 1.7% in the metabolic and sleep disorders pattern to 8.4% in the cardiovascular diseases, anemia, and dementia pattern. Compared with the unspecific pattern, only the cardiovascular diseases, anemia, dementia pattern was significantly associated with institutionalization [relative risk ratio (RRR) = 2.23; 95% confidence interval (CI) 1.07‒4.65)], after adjusting for demographic characteristics and disability status at baseline. In stratified analyses, those not receiving formal care in the psychiatric diseases pattern (RRR 3.34; 95% CI 1.20‒9.32) and those not receiving formal or informal care in the ‘cardiovascular diseases, anemia, dementia’ pattern (RRR 2.99; 95% CI 1.20‒7.46; RRR 2.79; 95% CI 1.16‒6.71, respectively) had increased risks of institutionalization.Conclusions and ImplicationsOlder persons suffering from specific multimorbidity patterns have a higher risk of institutionalization, especially if they lack formal or informal care. Interventions aimed at preventing the clustering of diseases could reduce the associated burden on residential long-term care. Formal and informal care provision may be effective strategies in reducing the risk of institutionalization.     

Self‐directed community services for older Australians: a stepped capacity‐building approach

Consumer‐directed care (CDC) is increasingly widespread among aged care service options in Organisation for Economic Co‐operation and Development (OECD) countries. However, the evidence base regarding the programmatic and contextual factors that affect the outcome of CDC interventions is surprisingly small. This paper reports on a self‐directed care approach for older Australians with complex care needs. A multi‐methods longitudinal comparative cohort study was employed comprising 4 survey tools and 56 semi‐structured interviews. Participation rates were around 20%. A total of 185 (98 in the intervention and 87 in the control group) older people and carers were recruited at baseline. Eleven months later, 109 participants (59 in the intervention and 50 in the control group) completed the repeat measure. Attrition rates were around 40%. Data collection occurred between July 2010 and April 2012. The data suggest that intervention group participants were likely to be more satisfied with the way they were treated (P = 0.013), their care options (P = 0.014), the ‘say’ they had in their care (P < 0.001), the information they received regarding their care (P = 0.012), what they were achieving in life (P = 0.031), that the services changed their view on what could be achieved in life (P = 0.020) and with their standard of living (P = 0.008). The evaluation suggests that while only a very small segment of older people is interested in a voucher or cash option, a substantially larger group would like to have greater say over and more direct access to their care, without, however, assuming administrative and financial responsibilities. The paper concludes that a stepped capacity‐building approach to CDC may improve the acceptability of CDC to older people and generate synergies that improve older people's care outcomes.     

Creating opportunities for patient participation in managing medications across transitions of care through formal and informal modes of communication

BackgroundCommunicating about medications across transitions of care is important in older patients who frequently move between health care settings. While there is increasing interest in understanding patient communication across transitions of care, little is known about older patients'' involvement in formal and informal modes of communication regarding managing medications.ObjectiveThe aim of this paper was to explore how older patients participated in managing their medications across transitions of care through formal and informal modes of communication.MethodsThe study was conducted across two metropolitan hospitals: an acute hospital and a geriatric rehabilitation hospital in metropolitan Melbourne, Australia. A focused ethnographic design was used involving semi‐structured interviews (n = 50), observations (203 h) and individual interviews or focus groups (n = 25). Following thematic analysis, data were analysed using Fairclough''s Critical Discourse Analysis.ResultsData analysis revealed two major discursive practices, which comprised of an interplay between formal and informal communication and environmental influences on formal and informal communication. Self‐created patient notes were used by older patients to initiate informal discussion with health professionals about medication decisions, which challenged traditional unequal power relations between health professionals and patients. Formal prompts on electronic medication administration records facilitated the continuous information discourse about patients'' medications across transitions of care and encouraged health professionals to seek out older patients'' preferences through informal bedside interactions. Environmental influences on communication comprised health professionals'' physical movements across private and public spaces in the ward, their distance from older patients at the bedside and utilization of the computer systems during patient encounters.ConclusionOlder patients'' self‐created medication notes enabled them to take on a more active role in formal and informal medication communication across transitions of care. Older patients and family members did not have continuous access to information about medication changes during their hospital stay and systems often failed to address older patients'' key concerns about their medications, which hindered their active involvement in formal and informal communication.Patient or Public ContributionOlder adults, family members and health professionals volunteered to be interviewed and observed.     

Impact of a Japanese Incentivization Program to Increase End-of-Life Care Outside of Hospitals

ObjectivesTo analyze the association of an incentivization program to promote death outside of hospitals with changes in place of death.DesignA longitudinal observational study using national databases.Setting and ParticipantsParticipants comprised Japanese decedents (≥65 years) who had used long-term care insurance services and died between April 2007 and March 2014.MethodsUsing a database of Japanese long-term care insurance service claims, subjects were divided into community-dwelling and residential aged care (RAC) facility groups. Based on national death records, change in place of death after the Japanese government initiated incentivization program was observed using logistic regression.ResultsHospital deaths decreased by 8.7% over time, mainly due to an increase in RAC facility deaths. The incentivization program was more associated with decreased in-hospital deaths for older adults in RAC facilities than community-dwelling older adults.Conclusions and ImplicationsIn Japan, the proportion of in-hospital deaths of frail older adults decreased since the health services system introduced the incentivization program for end-of-life care outside of hospitals. The shift of place of death from hospitals to different locations was more prominent among residents of RAC facilities, where informal care from laymen was required less, than among community residents.     

Important components for Dutch in‐home care based on qualitative interviews with persons with dementia and informal caregivers

BackgroundDementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs.ObjectiveTo identify important components of in‐home care for persons with dementia and their informal caregivers in the Netherlands.DesignSemi‐structured interviews across the Netherlands, between March and June 2019 using thematic analysis.Setting and participantsPersons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi‐structured interviews findings.ResultsFive themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers.ConclusionThis study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.     

The psychometric properties of three self-report screening instruments for identifying frail older people in the community

Background  

Frailty is highly prevalent in older people. Its serious adverse consequences, such as disability, are considered to be a public health problem. Therefore, disability prevention in community-dwelling frail older people is considered to be a priority for research and clinical practice in geriatric care. With regard to disability prevention, valid screening instruments are needed to identify frail older people in time. The aim of this study was to evaluate and compare the psychometric properties of three screening instruments: the Groningen Frailty Indicator (GFI), the Tilburg Frailty Indicator (TFI) and the Sherbrooke Postal Questionnaire (SPQ). For validation purposes the Groningen Activity Restriction Scale (GARS) was added.     

Experiences of home‐care workers with the ‘Stay Active at Home’ programme targeting reablement of community‐living older adults: An exploratory study

To face the challenges of an ageing population, many Western countries nowadays stimulate an ageing in place policy to empower older adults to grow old in their own homes with the highest degree of self‐reliance. However, many community‐living older adults experience limitations in (instrumental) activities of daily living ((I)ADLs), which may result in a need for home‐care services. Unfortunately, home‐care workers often provide support by taking over tasks, as they are used to doing things for older adults rather than with them, which undermines their possibilities to maintain their self‐care capabilities. In contrast, reablement focuses on capabilities and opportunities of older adults, rather than on disease and dependency. Consequently, older adults are stimulated to be as active as possible during daily and physical activities. The 'Stay Active at Home' programme was designed to train home‐care workers to apply reablement in practice. To explore the experiences of home‐care workers with this programme an exploratory study was conducting in the Netherlands, between April and July, 2017. In total, 20 participants were interviewed: nine nurses (including a district nurse), 10 domestic support workers and the manager of the domestic support workers. The semi‐structured interviews focused on the experienced improvements with regard to knowledge, skills, self‐efficacy and social support. Furthermore, the most and least appreciated programme components were identified. The study has shown that home‐care workers perceived the programme as useful to apply reablement. However, they also need more support with mastering particular skills and dealing with challenging situations. Future implementation of the 'Stay Active at Home' programme can potentially benefit from small adaptions. Furthermore, future research is needed to examine whether the programme leads to more (cost‐) effective home care.     

Gender differences among Canadian spousal caregivers at the end of life

The purpose of this study was to examine gender differences in spousal caregiving at the end of life. The primary research question was to determine gender differences in caregiver strain among spousal caregivers. Secondary research questions investigated included (i) the presence of gender differences among spousal caregivers in the duration of care provided; (ii) gender differences among spousal caregivers in formal service use and unmet service needs; and (iii) whether support to care recipients in activities of daily living varied according to the gender of the spousal caregiver. The study was conducted over a 2‐year period (2000–2002) in south‐central Ontario, Canada. The study sample included 283 informal spousal caregivers (198 females, 85 males) each of whom were caring for a terminally ill spouse at the time they participated in a cross‐sectional telephone survey. The analysis showed that females reported a significantly greater level of caregiving strain than males (t = –2.12, d.f. = 281, P = 0.035). When considering source of support in activities of daily living for the care recipient, differential assistance was noted on the basis of caregiver gender. Female caregivers had almost twice the odds of providing support in toileting‐related tasks than male caregivers (odds ratio (OR) = 1.98, 95% confidence interval (CI) = 1.01–3.85, P = 0.044), while male caregivers had approximately twice the odds of providing support in mobility‐related tasks (OR = 0.41, 95% CI = 0.21–0.81, P = 0.011). Care recipients who had a female caregiver had lower odds of receiving support from family and friends in tasks associated with personal care (OR = 0.17, 95% CI = 0.05–0.53, P = 0.002). To address gender differences in caregiving, a realistic home‐based palliative care approach must take into account the importance of informal caregivers.     

A New Functional Classification Based on Frailty and Disability Stratifies the Risk for Mortality Among Older Adults: The FRADEA Study

ObjectivesThe aim of the current study was to investigate whether a new functional classification, based on basic (BADL) and instrumental (IADL) activities of daily living and frailty, is associated with mortality in older adults during 10 years of follow-up.DesignCohort study, with a follow-up of 10 years.Setting and participantsA total of 924 participants aged 70 and older from the Frailty and Dependence in Albacete (FRADEA) study, a population-based sample of Spanish older adults.MeasuresAt baseline, a new functional classification of 8 categories was constructed with limitations in BADL using the Barthel Index, limitations in IADL using the Lawton IADL Index, and the criteria of the frailty phenotype. Associations with 10-year mortality were assessed using Kaplan-Meier curves and Cox proportional hazard models.ResultsThe risk of mortality gradually increased toward the less functionally independent end of the classification. The presence of mild, moderate, or severe BADL impairment was associated with mortality, in models adjusted for age, sex, comorbidity and institutionalization. The analyses also revealed that those who were BADL independent, IADL dependent and prefrail [hazard ratio (HR) = 2.27, 95% confidence interval (CI) = 1.22-4.20], and those who were BADL independent and frail (HR = 3.74, 95% CI = 1.88-7.42) had an increased risk of mortality.Conclusions/implicationsA new functional classification composed of BADL, IADL, and frailty representing the functional continuum is effective in stratifying the risk for mortality in older adults. Frailty is a high-mortality-risk state close to subjects with mild disability in BADL, needing an intensive specialized approach. Prefrailty with any impairment in IADL has an intermediate mortality risk and should be offered primary care interventions.     

Differential impacts of care‐giving across three caregiver groups in Canada: end‐of‐life care,long‐term care and short‐term care

Using data from Statistic Canada's General Social Survey Cycle 21 (GSS 2007), this study explores whether differences exist in the impacts of care‐giving among three groups of caregivers providing informal care either in the caregiver's or recipient's home, or in other locations within the community: (i) those providing end‐of‐life (EOL) care (n = 471); (ii) those providing long‐term care (more than 2 years) for someone with a chronic condition or long‐term illness (n = 2722); and (iii) those providing short‐term care (less than 2 years) for someone with a chronic condition or long‐term illness (n = 2381). This study lays out the variation in sociodemographic characteristics across the three caregiver groups while also building on our understanding of the differential impacts of care‐giving through an analysis of determinants. All three groups of caregivers shared a number of sociodemographic characteristics, including being female, married, employed and living in a Census Metropolitan Area (CMA). With respect to health, EOL caregivers were found to have significantly higher levels of ‘fair or poor’ self‐assessed health than the other two groups. Overall, the findings suggest that EOL caregivers are negatively impacted by the often additional role of care‐giving, more so than both short‐term and long‐term caregivers. EOL caregivers experienced a higher proportion of negative impacts on their social and activity patterns. Furthermore, EOL caregivers incurred greater financial costs than the other two types of informal caregivers. The impacts of EOL care‐giving also negatively influence employment for caregivers when compared with the other caregiver groups. Consequently, EOL caregivers, overall, experienced greater negative impacts, including negative health outcomes, than did long‐term or short‐term caregivers. This provides the evidence for the assertion that EOL care‐giving is the most intense type of care‐giving, potentially causing the greatest caregiver burden; this is shown through the greater negative impacts experienced by the EOL caregivers when compared with the short‐term and long‐term caregivers.     

Reconciliation of work and care among lone mothers of adults with intellectual disabilities: the role and limits of care capital

In this study, the concept of social capital is applied to an exploration of Guanxi (social networking to create good relationships) among working lone mothers of adults with intellectual disabilities (ID) in Taiwan. Using in‐depth interviews, this study explores the role of social capital, here referred to as ‘care capital’, in making it possible for working lone mothers to combine their roles as family carers and workers. Eleven divorced or widowed mothers combining their paid work with long‐term care responsibilities were recruited from a survey or through NGOs and were interviewed at their home between October 2008 and July 2010. An interpretative phenomenological approach was adopted for data analysis. The findings revealed that the mothers’ care capital was extremely limited and was lost, gained and lost again during their life‐cycles of long‐term care‐giving. Guanxi, especially in relation to their employers, proved to be the sole source of care capital for these mothers, making reconciliation between work and care responsibilities possible. In the absence of formal or informal support, religion and the mother–child relationship seemed also to become a kind of care capital for these lone mothers, helping them to get by with their life‐long care responsibilities. For formal social and healthcare services, not just in Taiwan but in every country, it is important to develop support for lone mothers of adults with ID who have long‐term care responsibilities and low levels of care capital and thus face care poverty.