Rehabilitees' conceptions of participation after a six-month rehabilitation period: a phenomeno-graphic study.

PURPOSE: A prerequisite for successful rehabilitation is that the rehabilitees are in central role of the rehabilitation process. However, the rehabilitees and rehabilitation professionals may both lack knowledge and understanding of how to implement rehabilitee-centered participation in practice. This study aimed to explore the qualitatively different ways of understanding rehabilitee participation as conceptualized by the rehabilitees. METHODS: We generated data from individual interviews with 20 rehabilitees after a six-month rehabilitation process. These interviews were analyzed based on phenomenographic methodology. RESULTS: We identified three understandings of rehabilitee participation as conceptualized by the participants: 1) Dependent participation; 2) Progressive participation; and 3) Committed participation. These categories varied according to four themes: 1) Rehabilitation process; 2) Rehabilitation in everyday life; 3) Interaction in rehabilitation; and 4) Rehabilitation support network. We also identified critical aspects highlighting differences between the qualitatively distinct categories. CONCLUSION: This study generated new insights into understanding the phenomenon of rehabilitee participation, as conceptualized by rehabilitees themselves. The findings in terms of three descriptive categories and critical aspects between the categories, reflect the ascending and shifting complexity from dependent to progressive and committed participation. These findings as such can be utilized in the design, development, and implementation of rehabilitee participation and rehabilitee-centered practice.

Conceptions of healthcare professionals about rehabilitees' participation in goal setting in an acute hospital: A phenomenographic study.

PURPOSE: In acute care, effective goal-setting is an essential phase of a successful rehabilitation process. However, professionals' knowledge and skills in rehabilitee-centered practice may not always match the ways of implementing goal-setting. This study aimed to describe the variation in how acute hospital professionals perceive and comprehend rehabilitee participation in rehabilitation goal-setting. METHODS: Data were collected by interviewing 27 multidisciplinary rehabilitation team members in small groups shortly after rehabilitation goal-setting sessions. A qualitative research design based on phenomenography was implemented. RESULTS: We identified four conceptions of rehabilitee participation, based on four hierarchically constructed categories: 1) Professional-driven rehabilitee participation; 2) Awakening rehabilitee participation; 3) Coaching participation; and 4) Shared participation. These categories varied according to four themes: 1) Use of power; 2) Ability to involve; 3) Interaction process; and 4) Atmosphere. Three critical aspects between the categories were also identified: 1) Appreciative listening; 2) Trustful relationship; and 3) Collaborative partnership. CONCLUSION: The study generated new insights into the meaning of rehabilitee participation, as conceptualized in relation to rehabilitation goal-setting and an acute hospital context. The identified critical aspects can be useful for planning and developing continuing professional education (CPE) in rehabilitation goal-setting for professionals.

Use of prescription benzodiazepines and related drugs in family caregivers: a nation-wide register-based study.

BACKGROUND: objective indicators of sleep and mental health problems in family caregivers have rarely been reported. OBJECTIVE: to study the use of prescription benzodiazepines and related drugs (BZDRD) in Finnish family caregivers and matched controls. DESIGN: prospective follow-up in 2012-17. SETTING: nationwide register-linkage study. SUBJECTS: all individuals who received family caregiver's allowance in Finland in 2012 (N = 42,256; mean age 67 years; 71% women) and controls matched for age, sex and municipality of residence (N = 83,618). METHODS: information on purchases of prescription BZDRD, including the number of defined daily doses (DDDs), between 2012 and 2017 was obtained from the Dispensations Reimbursable under the National Health Insurance Scheme register. Background information was obtained from national registers. RESULTS: more caregivers than controls used BZDRD, both among women (users per 100 person-years: 17.2 versus 15.2, P < 0.001) and men (14.6 versus 11.8, P < 0.001). These differences were largely explained by hypnotic BZDRD use. There were also more long-term BZDRD users per 100 person-years among caregivers than controls, both among women (5.0 versus 4.3, P = 0.001) and men (5.3 versus 3.8, P < 0.001). Use of hypnotic BZDRD in number of DDDs was higher in caregivers than in controls, particularly among men above 50 years. Caregivers used more anxiolytic BZDRD than controls from middle age to 75 years but less in the oldest age groups. CONCLUSIONS: higher level of BZDRD use among caregivers indicates that caregivers have more sleep and mental health problems than non-caregivers. Adequate treatment of these problems and support for caregiving should be ensured for caregivers.

Correction to: Revisiting the Nordic long-term care model for older people-still equal?

[This corrects the article DOI: 10.1007/s10433-022-00703-4.].

Experiences of family caregivers of persons living with dementia with and without a smart- clothes assisted home nursing program during the heightened COVID-19 alert.

BACKGROUND: The COVID-19 pandemic has required restrictions of daily activities, which has been found to impact the lives of persons living with dementia (PLWDs) and their family caregivers, who have multiple care demands. The lack of relevant studies in Taiwan emphasized the need to explore the experiences of family caregivers of older PLWDs faced with the intensified restrictions to control the spread of COVID-19, and the impact of the availability of a smart-clothes home nursing program. METHODS: This qualitative study used semi-structured interviews with family caregivers of older PLWDs. Participants were recruited from dementia clinics of a medical center in northern Taiwan from a subset of a sample from a larger study on smart-clothes assisted home nursing care. A total of 12 family caregivers who participated in the original study were interviewed during the follow-up period; seven family caregivers of a PLWD wearing a smart-vest, which transmitted information to a home care nurse; five caregivers of a PLWD not wearing a smart-vest. Interviews were conducted by telephone because the conditions of the pandemic prevented face-to-face interviews. Recorded interviews were transcribed and analyzed using content analysis. RESULTS: Interview data showed family caregivers' felt the care recipient's health was compromised and functional conditions intensified as Covid-19-related pandemic restrictions increased. Specific concerns included a lack social interactions, decreased daily activity levels, loss of interest and lack of motivation for activities, increased mood and behavioral problems, a decline in physical function and an increase in health problems. Family caregivers were also impacted by these restrictions, with significant increases in severity of caregiver role strain, including feeling trapped, a lack of in-home support, profound powerlessness, and worries about the PLWD contracting the coronavirus. The smart-clothes assisted home nursing care program offered supplementary support to family caregivers by providing on-time interactions, helping them manage health problems, enhancing predictability of the care recipient's behaviors, and providing caregivers with emotional support. CONCLUSIONS: The findings of this study support alternative care such as implementation of technology-assisted home health services to meet caregiver needs to facilitate family caregiving of PLWDs during the necessary restrictions in activities implemented during the COVID-19 pandemic. TRIAL REGISTRATION: ClinicalTrials.gov Protocol Record NCT05063045.

Revisiting the Nordic long-term care model for older people-still equal?

With the extensive long-term care services for older people, the Nordic countries have been labelled 'caring states' as reported (Leira, Welfare state and working mothers: the Scandinavian experience, Cambridge University Press, Cambridge, 1992). The emphasis on services and not cash benefits ensures the Nordics a central place in the public service model (Anttonen and Sipilä, J Eur Soc Policy 6:87-100, 1996). The main feature of this ideal model is public social care services, such as home care and residential care services, which can cover the need for personal and medical care, as well as assistance with household chores. These services are provided within a formally and professionally based long-term care system, where the main responsibility for the organization, provision and financing of care traditionally lays with the public sector. According to the principle of universalism (in: Antonnen et al. (eds), Welfare state, universalism and diversity, Elgar, Cheltenham, 2013), access to benefits such as home care and residential care is based on citizenship and need, not contributions nor merit. Also, care services should be made available for all and generally be used by all, with no stigma associated. Vabø and Szebehely (in: Anttonen (ed), Welfare State, universalism and diversity, Edward Elgar Publishing, London, 2012)) further argue that the Nordic service universalism is more than merely issues of eligibility and accessibility, in that it also encompasses whether services are attractive, affordable and flexible in order to meet a diversity of needs and preferences. However, recent decades have seen a continuous tendency towards prioritization of care for the most frail, contributing to unmet need, informalization of care and privatization in the use of topping up with market-based services. These changes have raised questions about increasing inequalities within Nordic long-term care systems. We investigate in the article what effect changes have for equality across social class and gender, for users and informal carers. The article is based on analysis of comparable national and international statistics and a review of national research literature and policy documents.

Work incapacity among family caregivers: a record linkage study.

BACKGROUND: Family caregiving-related physical and mental health problems may lead to work incapacity in employed caregivers. The aim of this study was to quantify sickness absences and disability pensions (SADP) among high-intensity family caregivers available to the labour market compared with a control population. METHODS: The study sample included all individuals in Finland, who had received caregiver's allowance and were available to the labour market in 2012 (n=16 982) and their controls (n=35 371). Information on the number of sickness absence (spells >10 days) and disability pension (SADP) days and related diagnoses according to ICD-10 were obtained from national registers for the years 2012-2017. The analyses were adjusted for age, sex, occupational status, education, income and degree of urbanisation. RESULTS: During the follow-up, 40.9% of caregivers and 39.5% of controls had at least one sickness absence spell and 6.1% and 4.7%, respectively, received disability pension. The mean annual number of SADP days was 23.2 (95% CI 22.3 to 24.1) for caregivers and 18.5 (95% CI 18.0 to 19.0) for controls (adjusted incidence rate ratio (IRR)=1.16, 95% CI 1.10 to 1.22). The number of annual SADP days due to mental disorders was higher in caregivers (7.2, 95% CI 6.7 to 7.8) than controls (4.0, 95% CI 3.8 to 4.3; adjusted IRR 1.58, 95% CI 1.42 to 1.75). There were no differences in SADP days due to cancer, neurological, cardiovascular, respiratory, or musculoskeletal diseases, or external causes. DISCUSSION: Higher number of SADP days due to mental disorders in caregivers suggests that family caregiving has an adverse effect on work capacity and that caregivers are at increased risk for mental disorders.

Use of antidepressants among Finnish family caregivers: a nationwide register-based study.

PURPOSE: The purpose of this study was to compare the use of antidepressants over 6 years between family caregivers providing high-intensity care and a matched control population using register-based data. METHODS: The study includes all individuals, who received family caregiver's allowance in Finland in 2012 (n = 29,846 females, mean age 66 years; n = 12,410 males, mean age 71 years) and a control population matched for age, sex, and municipality of residence (n = 59,141 females; n = 24,477 males). Information on purchases of antidepressants, including the number of defined daily doses (DDD) purchased, between 2012 and 2017 was obtained from the national drugs reimbursement register. RESULTS: During the follow-up, 28.5% of female caregivers and 23.5% of the female controls used antidepressants, while the numbers for males were 21.1% and 16.4%, respectively. Adjusted for socioeconomic status, female caregivers used 43.7 (95% confidence interval 42.4-45.0) and their controls used 36.2 (35.3-37.2) DDDs of antidepressants per person-year. Male caregivers used 29.6 (27.6-31.6) and their controls used 21.6 (20.2-23.0) DDDs of antidepressants per person-year. Among female caregivers, the relative risk for use of antidepressants was similar (about 1.3) from 20 to 70 years, after which the relative risk declined. In male caregivers, the relative risk was highest (about 1.4-1.5) between 45 and 65 years. CONCLUSIONS: Family caregivers providing high-intensity care use more antidepressants and hence, are likely to have poorer mental health than the age-matched general population in virtually all age groups. However, the magnitude of the higher use varies as a function of age and gender.

Age-dependency in mortality of family caregivers: a nationwide register-based study.

BACKGROUND: Evidence on family caregivers' health is conflicting. AIM: To investigate all-cause and cause-specific mortality in Finnish family caregivers providing high-intensity care and to assess whether age modifies the association between family caregiver status and mortality using data from multiple national registers. METHODS: The data include all individuals, who received family caregiver's allowance in Finland in 2012 (n = 42,256, mean age 67 years, 71% women) and a control population matched for age, sex, and municipality of residence (n = 83,618). Information on dates and causes of death between 2012 and 2017 were obtained from the Finnish Causes of Death Register. RESULTS: Family caregivers had lower all-cause mortality than the controls over the follow-up (8.1 vs. 11.6%) both among women (socioeconomic status adjusted hazard ratio [HR]: 0.64, 95% CI 0.61-0.68) and men (adjusted HR: 0.73, 95% CI 0.70-0.77). When modelling all-cause mortality as a function of age, younger caregivers had only slightly lower or equal mortality to their controls, but older caregivers had markedly lower mortality than their controls, up to more than 10% lower. Caregivers had a lower mortality rate for all the causes of death studied, namely cardiovascular, cancer, neurological, external, respiratory, gastrointestinal and dementia. The lowest risk was for dementia (subhazard ratio = 0.29, 95% CI 0.25-0.34). CONCLUSIONS: Older family caregivers had lower mortality than the age-matched general population while mortality did not differ according to caregiver status in young adulthood. This age-dependent advantage in mortality is likely to reflect the selection of healthier individuals into the family caregiver role.

Rehabilitees perspective on goal setting in rehabilitation - a phenomenological approach.

Purpose: Setting meaningful goals for the rehabilitation process after acute illness is essential for rehabilitees recovery. The aim of this study was to understand the meanings of the goal setting situation with professionals from rehabilitees point of view. Method: We included 20 acute stroke and back pain rehabilitees (mean age 66 y) who set goals with a multidisciplinary rehabilitation team. Data was collected by interviewing the rehabilitees after the goal setting situations. A qualitative analysis from a phenomenological perspective using Spiegelberg's seven-phase meaning analysis was performed to reveal meanings. Results: The five meanings were identified as: (i) "trust in the rehabilitation situation, professionals, oneself, and relatives;" (ii) "respectful presence;" (iii) "confusing awareness;" (iv) "disturbing pain;" and (v) "fear of unpredictability." When professionals committed to working in a patient-centred manner, the rehabilitees felt respected and they trusted professionals and thus their self-efficacy was empowered. Moreover, relatives were an important support in the situation. However, disturbing pain and fear of the future limited patients level of participation in the situation. Conclusion: Rehabilitee commitment to rehabilitation can be supported with equality in communication and presence of relatives, while pain and uncertainty because of changed health limit participation in a goal setting situation. Implications for Rehabilitation Multidisciplinary rehabilitation professionals should be recommended to support the active role of a patient in the goal setting situation. Relatives are recommended to participate in goal setting situation as they are an important support for rehabilitees. Professionals should be recommended to remove obstacles that restrain patient's participation in the goal setting situation. Professionals should be recommended to recognize patients with changed health and offer psychosocial support for those in need to improve their participation in rehabilitation process.

Underemployment among mothers of children with intellectual disabilities.

BACKGROUND: Mothers with lifelong care responsibilities might involuntarily be non-employed or work part-time, both of which are defined as "underemployment." This study aimed to investigate who these underemployed mothers are and what are the factors associated with such employment hardship when having a child with intellectual disability (ID). METHOD: An interview survey was conducted in 2011 in two local authorities of Taiwan on 876 working-age mothers with a child with intellectual disability; 514 of them were working part-time/non-employed and chosen as participants of this study. RESULTS: The mothers with a younger child with intellectual disability, a higher level of education, a lower level of family income and more family members with disabilities were more likely to be underemployed compared with the mothers who were voluntarily working part-time/non-employed. CONCLUSIONS: The underemployed mothers were more likely to have financial difficulty and heavy caregiving loads; their employment hardship should be of concern for policymakers.

Users of home-care services in a Nordic welfare state under marketisation: the rich, the poor and the sick.

Stricter access to public services, outsourcing of municipal services and increasing allocation of public funding for the purchase of private services have resulted in a marketisation wave in Finland. In this context of a Nordic welfare state undergoing marketisation, this paper aims to examine the use of Finnish care services among older people and find out who are using these new kinds of private services. How wide is their use and do the users of private care services differ from those who are using public services? How usual is it to mix both public and private care services? The questionnaire survey data set used here was gathered in 2010 among the population aged 75 and over in the cities of Jyväskylä and Tampere (N = 1436). The methods of analysis used include cross-tabulation, chi-square tests and multinomial logistic regression. The findings showed that among those respondents who used care services (n = 681), 50% used only public services, 24% utilised solely private services and the remaining 26% used both kinds of services. Users of solely private services had significantly higher income and education as well as better health than those using public services only. The users of public services had the lowest education and income levels and usually lived in rented housing. The third group, those mixing both public and private services, reported poorer health than others. The results increase concerns about the development towards a two-tier service system, jeopardising universalistic Nordic principles, and also suggest that older people with the highest needs do not receive adequate services without complementing their public provisions with private services.

Universal Breadwinner Versus Universal Caregiver Model: Fathers' Involvement in Caregiving and Well-Being of Mothers of Offspring with Intellectual Disabilities.

BACKGROUND: The universal breadwinner model means both parents are employed; while the universal caregiver model implies that the father's hours of caregiving are equal or higher to those of the mother. This study aims to examine the hypothesis that the universal caregiver model is more related to the overall well-being of mothers of children with intellectual disabilities than the universal breadwinner model. METHODS: Face-to-face interview surveys were conducted in 2011 in Taiwan with 876 working-age mothers who had an offspring with intellectual disabilities. The survey included 574 mothers living with their husbands who became our participants. RESULTS: Both anova and regression analyses indicated that, compared with mothers in the universal breadwinner group, mothers in the universal caregiver group had higher levels of maternal marital and family life satisfaction, but not of work satisfaction and quality of life. CONCLUSIONS: An incentive policy is critical for supporting the fathers involved in lifelong caregiving and to promote the mothers' quality of life.

Models of long-term care use among older people with disabilities in Taiwan: institutional care, community care, live-in migrant care and family care.

The four main models of long-term care (LTC) for older people in Taiwan are institutional care, community and home-based care, live-in migrant care and family care. This study aims to examine the factors associated with the four above-mentioned LTC models, using the Andersen model as its framework for analysis. Data were from the 2005 National Taiwanese Health Interview Survey (n = 30,680), and in this study, 592 over 65-year-old persons who require personal care in daily life were included. The findings showed that the majority of older people with care needs lived with family and were cared only by their family. The second largest group was those older people who were cared by migrant care workers, and the third group used institutional care. Only a very small proportion used community/home-based care services. If older people had intensive care needs, they either hired migrant care workers or used institutional care, depending on social and economic backgrounds. Multinomial logistic regression results showed that the way how disabled older people use different LTC models was affected by three components of the Andersen model: their needs (level of ADL and IADL), predisposing factors (age, education) and enabling factors (family networks). Results suggest that there is a need for LTC policies in Taiwan to provide more available and accessible community/home-based care services, particularly for older people with intensive care needs, in order to support their 'ageing in place' and to decrease the use of migrant care workers.

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.

Transformation by stealth: the retargeting of home care services in Finland.

This paper analyses the trends and changes that home care services for older people have undergone during the last two decades in Finland. The data used come from national social care statistics, covering the time period from 1990-2010. The results show that, in contrast to many other European nations that have expanded their home care provisions, the coverage levels in Finland have dropped dramatically during this period. Those with the highest needs do receive increased amounts of support, but others have become excluded from publicly funded home care provisions and often need to rely on family members. In most localities, public service provision is focused on personal care, and no longer covers household tasks. This major change of the character of the service is connected to three other recent trends that structure current provisions: the amalgamation of home-based social and healthcare services, the marketisation and emerging privatisation of care and the integration of informal family care into the formal care system. Overall, the changes represent weakening defamilisation, that is, decreasing public responsibility for the needs of many older people and, correspondingly, an increasing reliance on family carers. This full-scale transformation of home care has taken place without any real policy debate or major modification of legislation. No actual decision was ever made to thoroughly alter the character of home care in Finland: the transformation happened by stealth.

Job satisfaction and quality of life among home care workers: a comparison of home care workers who are and who are not informal carers.

BACKGROUND: Job satisfaction and quality of life among home care workers who serve simultaneously as informal carers for their own family members have seldom been explored. This study examined how this dual role influences job satisfaction and quality of life by comparing these dual carers with home care workers who do not provide informal care. The study also explored whether the factors related to job satisfaction and quality of life between these two groups were different. METHOD: Standardized self-administered questionnaires (Job Satisfaction Survey, the World Health Organization Quality of Life (WHOQOL) scales and various social demographic questions) were administered to the two groups of home care workers in Taiwan from March to April 2009. A total of 1,641 home care workers working in 119 non-government organizations sponsored by 23 local authorities completed and returned the questionnaires. RESULTS: The two groups did not differ in individual characteristics, work characteristics or job satisfaction. Analysis results indicate that the lowest mean scores for all home care workers were the domains of promotion and pay within their job satisfaction and the domain of environment within their quality of life. CONCLUSIONS: Multiple regression analysis revealed a significant effect of unpaid caregiving in terms of quality of life but not in terms of job satisfaction. Moreover, job satisfaction and quality of life among home care workers were significantly determined by both their work conditions (e.g. travelling time, salary and length of work experience) and personal variables (e.g. age, family income and family support).

Caring, employment, and quality of life: comparison of employed and nonemployed mothers of adults with intellectual disability.

The effects of caregiving on mothers of adults with intellectual disability was examined by determining whether there are differences in quality of life and related factors between mothers with different employment status. Study participants were 302 working-age mothers who had adult children with intellectual disability based on the 2008 census survey on intellectual disability carried out in Hsinchu, City, Taiwan. Results revealed that nonemployed mothers are more likely to have a lower level of health status, including the WHOQOL Physical Health domain, than are mothers employed fulltime. Multiple regression analysis showed that mothers' quality of life was significantly determined by the availability of a person with whom they could share care work, family income, social support, and employment status.

Older and younger family caregivers of adults with intellectual disability: factors associated with future plans.

A structured interview survey was conducted in a major city in Taiwan to explore and compare older and younger family primary caregivers' well being and their future caregiving plans for these adults with intellectual disability. The sample size was 315 caregivers who were 55 years or older and who cared for adults with intellectual disability and 472 similar caregivers who were under 55 years of age. The results indicated that the older caregivers compared with younger ones reported a lower quality of life, less family support, a more negative perception of having a family member with intellectual disability, and greater worries about the future care arrangements of the adult with intellectual disability. Statistical analysis showed that predisposing, enabling, and need factors influenced the caregivers' future caregiving options.

Respite care as a community care service: factors associated with the effects on family carers of adults with intellectual disability in Taiwan.

BACKGROUND: This study examines the effects and associated factors of respite care, which was legislated as a community service for adults with an intellectual disability (ID) in Taiwan in 1997. METHOD: A total of 116 family carers who live with an adult with ID and have utilised the respite care program were surveyed using standardised measures. RESULTS: The results suggest that the most notable effects of respite care include improvement in the carers' social support and life satisfaction, and relief of psychological stress and overall burden of care. The factors associated with these effects include the way the participants have used the respite care and the users' individual characteristics. CONCLUSIONS: How families used the respite care, whether the carers practised a religion, and where the families resided, were the most significant factors in determining the effectiveness of the respite. Suggestions are made for making access to information about the program more widely available, and for extending the availability and duration of the service.