Participation and citizenship of elderly persons: user experiences from Finland

In the article the participation of the aged users and their relatives in a local health care and social service system will be discussed. How is their citizenship defined at the grass roots level? The research data were gathered during a case management project of the action research type in a Finnish rural municipality. The data of this study consist of 13 theme interviews: five elderly persons as care receivers and eight caregivers. The research approach is a dialogue between data based analysis and conceptual reasoning. Citizenship rights and obligations and participation should be defined flexibly and individually in the context of the local health care and social services. In the research data the elderly persons and their caregivers described participation in multiple ways. The modes of participation vary from passive and active disengagement from the process to contacting, negotiating, cooperating, and demanding.     

Spousal caregivers’ experiences of participation in everyday life when living in shifting contexts

Abstract

Background: To promote health and well-being, and to meet the desires of the growing elderly population to age in place, elderly spousal caregivers need adequate support such as respite care services. More knowledge is needed about elderly spousal caregivers’ experiences in relation to participation, which is an aspect of health that remains relatively unexplored for this group.

Aim: To explore and describe how elderly spousal caregivers experience and discuss participation in everyday life when living in shifting contexts due to the use of respite care.

Method: A grounded theory approach was used during data generation and analysis, which involved repeated focus group interviews with 12 spousal caregivers.

Results: Complexity and ambiguity was understood to imbue participation in everyday life. Being in charge of everyday life was challenging for spousal caregivers, and created a need for personal time. Respite care and home care service gave them time, although when interacting with social contexts other issues arose that influenced their own recovery.

Conclusions: A holistic ‘situation centered’ approach that focuses on the elderly couple’s life story and needs might capture a wider perspective and enable adequate support that influences their health, well-being, and participation in everyday life.     

Moving Beyond Quality-Adjusted Life-Years in Elderly Care: How Can Multicriteria Decision Analysis Complement Cost-Effectiveness Analysis in Local-Level Decision Making

ObjectivesThis study aimed to investigate how multicriteria decision analysis (MCDA) could complement cost-effectiveness analysis (CEA) to support investment decisions in elderly care at local level.MethodsWe used an integrated elderly care program in The Netherlands as a case study to demonstrate the application of both methods. In a 12-month quasi-experimental study (n = 384), data on the following outcome measures were collected: quality-adjusted life-years (CEA) and physical functioning, psychological well-being, social relationships and participation, enjoyment of life, resilience, person centeredness, continuity of care, and costs (MCDA). We performed regression analysis on inversed probability weighted data and controlled for potential confounders to obtain a double robust estimate of the outcomes. Probabilistic sensitivity analyses determined uncertainty for both methods.ResultsThe integrated elderly care program was not likely (ie, 36%) to be cost-effective according to the CEA (incremental cost-effectiveness ratios: €88 249 from a societal perspective) using the conventional Dutch willingness-to-pay threshold (ie, €50 000). The MCDA demonstrated that informal caregivers and professionals slightly preferred the intervention over usual care, driven by enjoyment of life and person centeredness. Patients did not prefer either the intervention or usual care, whereas payers and policy makers slightly preferred usual care, mainly due to higher costs of the intervention.ConclusionsMCDA could provide local-level decision makers with a broader measurement of effectiveness by including outcomes beyond health and longevity and the preferences of multiple stakeholders. This additional information could foster the acceptability and implementability of cost-effective innovations in elderly care.     

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.     

Factors of Caregiver Isolation in a Rural Midwest Area

ABSTRACT

The authors, working with a Veterans Affairs Home Based Primary Care Team in rural areas of Illinois and Indiana, noted the relative social isolation of many family caregivers of patients. They explored several factors that could contribute to this isolation: values held by the caregiver, transportation restraints, limited caregiver resources and caregiver health. Caregiver values, such as obligation and responsibility, stood out, contributing to generally excellent care for the elderly veteran patients, but also to the observed isolation. A solution would be increased funding for in-home respite, to help the family caregivers get needed rest and outings, thus responding to an expressed need, and enhancing their ability to provide “low-tech” in-home care to their loved ones.     

Les aidants de personnes âgées non dépendantes ont-ils des spécificités ? Étude auprès de 876 dyades personnes âgées-aidants

BackgroundThe increase in life expectancy and the aging of the population have a significant impact on the informal care provided by caregivers. Protecting caregivers against excessive burden has become a public health priority. The majority of studies target only those providing care for dependent elderly people. The aim of this study was to describe the characteristics of informal caregivers of non-dependent elderly persons, their difficulties and their level of burden.MethodsA cross-sectional study was conducted among 876 dyads: elderly people (over 70 years of age, non-dependent, living at home and having requested assistance from CARSAT South-East) and their caregivers. Two questionnaires were administered: one for the elderly (including the Frailty Group Iso-Resource Evaluation) and one for caregivers (including the Mini-Zarit Scale). A multi-component analysis and a logistic regression were performed.ResultsThe elderly were mainly women (77.6%) with a mean age of 82.2 ± 5.8 years and most were frail (94.7%). Most of the caregivers were women (64.5%) with a mean age of 62.7 ± 13.7 years. The multi-component analysis showed three categories of caregivers: spouses, children and others. Among them, spouses performed the most tasks (4.8 ± 2.6) and had the greatest burden. Caregivers in the “others” category were the least burdened and were the least impacted in their daily life. The children category caregivers were divided into two subgroups: those with characteristics similar to “others” caregivers and those with characteristics similar to “spouse” caregivers. Heavy burden was related to greater impact on daily life, poor relationships with the elderly and caregivers’ difficulties in performing their role.ConclusionThis study confirms the heterogeneous nature of informal caregiver profiles. It also shows that the characteristic features and the burden of these caregivers are similar whether the elderly person is dependent or non-dependent but frail.     

EDITORIAL

This article examines gender inequalities in the fields of health and familial elder care in China. Based on interviews conducted from 1997 to 1999 with 110 familial caregivers who were taking care of their physically dependent parents, this study explores various aspects of gender differences in both generations of care recipients and caregivers. The variables studied include health status, health care benefits, and income disparities among care recipients as well as caregiving task performance, employment status, and income levels among caregivers. Findings suggest that elderly female care recipients were more likely to receive no pension and medical benefits than their male counterparts; and female caregivers were more likely to earn less income when employed. Meanwhile, female caregivers were performing more hours of care tasks per week and were more involved in personal care and house chores even though they perceived their health as being poorer compared with their male counterparts. Male caregivers were more likely to provide financial assistance to parents. As the economic reforms continue and future family size reduces to a 4-2-1 inverted pyramid, the author argues that gender inequalities are likely to perpetuate or even worsen. Current female caregivers are likely to suffer from greater disadvantages in terms of reductions in income, retirement benefits, and health benefits due to their greater involvement with elder care. In turn, they are not going to have several adult children to share care responsibilities when they become older and need help.     

Impacto sobre el cuidador principal de una intervención realizada a personas mayores dependientes

ObjectiveTo evaluate the impact of joining a home care program on primary caregivers of dependent elderly people.DesignNon-randomised “before-after” intervention study.SettingPrimary Care.ParticipantsPrimary carers of elderly dependent people included in a home care program (n = 156; 7.8% loss to follow up).InterventionsInclusion in a home care program for chronically dependent elderly and the assessment of the primary carer in the same year.Variables assessedperceived health, frequency of visits, questionnaires of quality of life (Nottingham questionnaire), psychological health (Goldberg questionnaire), social support (Duke-UNC scale) and overburden of caregivers (Zarit questionnaire) and satisfaction with care received.ResultsThere were no significant changes in perceived health. Improvement in the areas of energy, sleep, emotional and social relationship of the quality of life. Decreased attendance (8.4 vs. 7.5, p < 0.05) and the percentage of overusers (30.1 vs 6.9%, P < .01). A reduced percentage of caregivers expressed low social support (8.3 vs 2.8%, P < .05) and caregiver overburden (56.4 vs 44.4%, P < .05). 90.3% of caregivers believed that care had improved at the end of intervention, with a significant improvement of satisfaction of overall medical and nursing care received (7.6 vs 8, 4, 7.9 vs 8.5 and 7 vs 8.5; P < .05).ConclusionsJoining a home care program for dependents has a positive impact on their primary caregiver and improves their perception of care received, reducing their use of health services, reducing the level of overburden and their perceived lack of social support.     

Impact of a person-centred group intervention on life satisfaction and engagement in activities among persons aging in the context of migration‡

Abstract

Background: There is a growing need to support the health and wellbeing of older persons aging in the context of migration.

Objectives: We evaluated whether a group-based health promotion program with person-centred approach, maintained or improved life satisfaction and engagement in activities of older immigrants in Sweden.

Methods: A randomised controlled trial with post-intervention follow-ups at 6 months and 1 year was conducted with 131 older independently living persons aged ≥70 years from Finland and the Balkan Peninsula. Participants were randomly allocated to an intervention group (4 weeks of group intervention and a follow-up home visit) and a control group (no intervention). Outcome measures were life satisfaction and engagement in activities. Chi-square and odds ratios were calculated.

Results: The odds ratios for maintenance or improvement of life satisfaction (for social contact and psychological health) were higher in the person-centred intervention group. More participants in the intervention group maintained or improved their general participation in activities compared with the control group. However, no significant between-group differences were found.

Conclusion: Person-centred interventions can support older person’s capability to maintain their health in daily life when aging in migration. Further research is needed with a larger sample and longer intervention period to determine the effectiveness of the intervention.     

Professional caregivers' mental health problems and burnout in small-scale and traditional long term care settings for elderly people with dementia in the Netherlands and Belgium

ObjectivesThe aim of this study was to provide an insight into burnout and mental health problems of professional caregivers working in traditional and small-scale long term care settings for elderly residents with dementia in the Netherlands and Belgium.DesignThis study was part of a larger study investigating similarities and differences between traditional and small-scale long term care settings for elderly residents with dementia. In this article, the perspective of the professional caregiver is of central importance. A survey was conducted among professional caregivers of residents with dementia, older than 65 years, at 2 measurement moments (at baseline and after 12 months).SettingThe questionnaire was administered to professionals working in traditional and small-scale long term care settings in the Netherlands and Belgium.ParticipantsProfessional caregivers (n = 80) working in 5 different care settings completed a questionnaire.MeasurementsThe questionnaire included items on personal data, mental health problems (GHQ-12), and burnout (UBOS-C, divided into emotional exhaustion, depersonalization, and personal accomplishment). Analyses were conducted using Mixed Models analysis.ResultsAlthough mental health problems and emotional strain increased significantly over time in both types of settings and countries, overall levels of health problems and burnout were low. As regards emotional strain, professional caregivers in small-scale living facilities showed significantly increased levels in comparison with traditional units. Two significant differences between the countries were also found, with less “depersonalization” and more “personal accomplishment” in Dutch settings compared with Belgian settings. No differences emerged for type of setting or over time on “depersonalization” and “personal accomplishment.” The analyses were controlled for age, sex, educational level, and work experience in dementia care, but did not yield significant effects.ConclusionOwing to cutbacks in expenditure, the growing number of people with dementia, and the heavier workload, the working environment will become increasingly challenging. Future research should focus on training professional caregivers working in long term care settings how to maximize the quality of client interaction while keeping burnout and mental health problems to a minimum.     

‘Triadic’ shared decision making in mental health: Experiences and expectations of service users,caregivers and clinicians in Germany

BackgroundShared decision making (SDM) in mental health may contribute to greater patient satisfaction and is sometimes associated with better health outcomes. Here, SDM should not only involve service users and clinicians but also involve the service users'' caregivers.AimThis study aimed to achieve better insight into the current SDM patterns of triads of service users, caregivers and clinicians in inpatient mental health care and the three parties'' expectations towards the prospects of triadic SDM.DesignThe current research uses data from a representative cross‐sectional study on caregivers in psychiatric inpatient treatment. We analysed data on n = 94 triads of service users, their caregivers and their clinicians.ResultsAll three parties acknowledge caregivers to be of great support to monitor the progress with mental disease. The caregiver''s role during consultations is most often described as being an expert, receiving or providing information and supporting service users. However, caregivers at times try to seek support for themselves during caregiver‐clinician interaction, or their behaviour was described as unhelpful. The potential prospects of caregiver involvement are clearly acknowledged despite the low implementation of caregiver involvement in this sample (only in one‐third of the cases).ConclusionTriadic SDM rarely takes place in routine inpatient care. First, there should be a focus on interventions aiming at inviting caregivers to consultations. Only in the second step should a better conceptualisation of triadic SDM be undertaken.Public ContributionEarly results were discussed with a local peer support group for caregivers of individuals living with mental illness.     

Social Capital,Participation and the Perpetuation of Health Inequalities: Obstacles to African‐Caribbean Participation in ‘Partnerships’ to Improve Mental Health

Objectives. There has recently been much emphasis on the role of ‘partnerships’ between local community ‘stakeholders’ in strategies to redress health inequalities. This paper examines obstacles to participation in such partnerships by African‐Caribbean lay people in local initiatives to improve mental health in a town in southern England. We present a ‘social psychology of participation’ which we use to interpret our data. Our work seeks to illustrate some of the micro‐social mechanisms through which social inequalities are perpetuated, using Bourdieu's conceptualisation of the role played by various forms of capital (economic, social, cultural and symbolic) in perpetuating social inequalities.

Design. Our empirical research consists of a qualitative case study of attitudes to participation in mental‐health‐related partnerships in a deprived community. In‐depth interviews and focus groups were conducted with 30 local community ‘stakeholders’, drawn from the statutory, voluntary, user and lay sectors.

Results. While interviewees expressed enthusiasm about the principles of participation, severe obstacles to its effective implementation were evident. These included severe distrust between statutory and community sectors, and reported disillusionment and disempowerment within the African‐Caribbean community, as well as low levels of community capacity. Moreover, divergent understandings of the meaning of ‘partnership’ suggested that it would be difficult to satisfy both community and statutory sectors at once.

Conclusions. We suggest that disadvantaged and socially excluded communities are often deprived of the social resources which would provide a solid basis for their participation in partnerships with state health services. In the absence of efforts to remove such obstacles, and to generate the necessary resources for participation, partnerships may be ‘set up to fail’, leaving social inequalities to prevail.     

Caregiving Stressors and Psychological Distress Among Veteran Resident and Immigrant Family Caregivers in Israel

Summary

The study compared caregiving stressors and psychological distress between Israeli veteran resident and immigrant family caregivers. It examined whether psychosocial variables (appraisal of caregiving, mastery, social support and coping) mediate the differences in psychological distress between these two groups. A total of 213 veteran resident and 206 immigrant (from the former Soviet Union) caregivers of chronically ill elderly were recruited from health services. The comparisons between the two groups were examined separately for spouse and adult child caregivers. The immigrant spouse and adult child caregivers reported significantly higher levels of caregiving stressors than veteran resident caregivers, but psychological distress was significantly higher only among the immigrant adult child caregivers. In multivariate analyses, the difference in psychological distress disappeared when caregiving stressors and mediating psychosocial variables were included in the regression models. Different caregiving stressors and psychosocial variables were associated with psychological distress among the spouses and among the adult child caregivers. The findings suggest that the caregiving stressors and psychosocial variables explain differences in psychological health outcomes between veteran resident and immigrant caregivers. Social work interventions should address these factors among caregivers, take into account the relationship to the care recipient, be culturally adapted to the immigrant caregivers, and target immigrant adult child caregivers in particular.     

Out of Pocket Expenditure for Sick Newborn Care in Referral Hospitals of Nepal

Background

Almost all preventable neonatal deaths take place in low- and middle-income countries and affect the poorest who have the least access to high quality health services. Cost of health care is one of the factors preventing access to quality health services and universal health coverage. In Nepal, the majority of expenses related to newborn care are borne by the caregiver, regardless of socioeconomic status. We conducted a study to assess the out of pocket expenditure (OOPE) for sick newborn care in hospitals in Nepal.

Methods

This cross-sectional study of hospital care for newborns was conducted in 11 hospitals in Nepal and explored OOPE incurred by caregivers for sick newborn care. Data were collected from the caregivers of the sick newborn on the topics of cost of travel, accommodation, treatment (drugs, diagnosis) and documented on a sick newborn case record form.

Results

Data were collected from 814 caregivers. Cost of caregivers’ stay accounted for more than 40% of the OOPE for sick newborn care, followed by cost of travel, and the baby’s stay and treatment. The overall OOPE ranged from 13.6 to 226.1 US dollars (USD). The median OOPE was highest for preterm complications ($33.2 USD; CI 14.0–226.1), followed by hyperbilirubinemia ($31.9 USD; CI 14.0–60.7), respiratory distress syndrome ($26.9 USD; 15.3–121.5), neonatal sepsis ($ 25.8 USD; CI 13.6–139.8) and hypoxic ischemic encephalopathy ($23.4 USD; CI 13.6–97.7).

Discussion for practice

In Nepal, OOPE for sick newborn care in hospitals varied by neonatal morbidity and duration of stay. The largest proportion of OOPE were for accommodation and travel. Affordable and accessible health care will substantially reduce the OOPE for sick newborn care in hospitals.

     

Applying the International Classification of Functioning,Disability and Health to guide home health care services planning and delivery in Thailand

ABSTRACT

Home health care is an essential service for home-bound patients in Thailand. In this action research study, we used the International Classification of Functioning, Disability and Health (ICF) framework to modify home health care services provided by a university hospital. Staff responsible for delivering the services (physical therapist, nurses, and Thai traditional medicine practitioners) participated in the development of an ICF-based assessment tool and home health care service procedure. After an 8-month trial of implementing these changes, professional satisfaction and empowerment were high among the home health care team members. Patients and their caregivers were also satisfied with the services. In conclusion, the ICF is an effective means of guiding home health care.     

Exploring reach and experiences of participation in health-promoting senior meetings in a municipality context

Aim

To explore reach and experiences of participants during implementation of health-promoting meetings of seniors in a Swedish municipality context.

Subjects and methods

A mixed-methods approach was used, including older people who were recruited consecutively and invited to participate as they applied for health care and/or home help services in the municipality. Inclusion criterion was allocation of “early” home-care services, e.g., meals on wheels, safety alarms. Health-care services were limited to persons applying for an outside walker. The intervention was multi-professional, e.g., occupational therapy and physiotherapy. Each session included a mix of short lectures and group discussions about, for example, the importance of engagement in meaningful activity, social contacts, and physical activity. Recruitment procedures were modified during the trial in order to enhance reach. The data collection included information on the flow of participants during recruitment and participation in the intervention, field notes covering the experience of implementing the intervention, a survey covering adherence to recruitment procedures, and qualitative interviews exploring the experience of participants.

Results

Senior meetings were experienced as positive and strengthened the participants in dealing with health-related concerns. The identification of potential participants and recruitment were challenging, but as recruitment procedures were modified, a higher proportion of potential participants were reached. In all, there were 29 participants over the study period.

Conclusion

For health-promoting meetings to enable community-dwelling older people to fulfill their potential by positively affecting health outcomes, recruitment procedures for optimizing reach is a critical feature.

     

La Revolución Ciudadana and social medicine: Undermining community in the state provision of health care in Ecuador

ABSTRACT

Under President Rafael Correa (2007–2017), Ecuador’s Ministry of Health established a state-centred health care regime that incorporates elements of Latin American social medicine into post-neoliberalism. These initiatives – which are part of ‘The National Plan for Good Living (Buen Vivir)’ – include free healthcare, greater attention to social determinants of health, a focus on equity and inclusion, and increased coordination across welfare, health, and development sectors. However, the reforms also use health services to build a sense of inclusive, participatory citizenship, with the Ecuadorean state as the central figure in service provision. In this paper, we demonstrate that state-centred health care reforms have paradoxically weakened community organising for collective health. Drawing on seventeen years of ethnographic research and health solidarity work in rural Northwest Ecuador, we illustrate how Ecuador’s health reforms have reconfigured relations among local civil society, transnational NGOs, and the state. Established modes of community participation and international collaboration have been undermined largely because these reforms ignore community sovereignty and self-organisation and overemphasise the threat of neoliberalism. The lessons about balancing the state-based fulfilment of rights with community power are relevant to social medicine advocates, particularly those working in rural communities that are already organising creatively for their own health and well-being.     

The Experience of Urban Aboriginals with Health Care Services in Canada

Abstract

This exploratory study investigates the experience of Canadian Urban Aboriginal persons as consumers of health care services. Results highlight significant gaps in the training, skills, and knowledge of health care providers to optimally serve their Aboriginal patients. Also, several programs which are potentially most problematic for Aboriginal patients are identified. The discussion outlines important roles for hospital social workers in improving the care provided to urban Aboriginal patients.