Home care for terminally ill patients: the experiences of family caregivers with and without paid work.

OBJECTIVES: To facilitate care at the end of life at home, support from family caregivers is crucial. A substantial number of these family caregivers also work. Work in relation to care for terminally ill patients has received limited attention. To better understand the context in which these family caregivers provide care, we provide a detailed overview of the situation and experiences of family caregivers of terminally ill patients at home, with and without paid work. METHODS: We used a pooled cross-section of data from the Dutch Informal Care Study, collected in 2014 and 2016. All working and non-working family caregivers of terminally ill patients at home were included (n=292). RESULTS: Working family caregivers reported more care tasks, and shared care tasks with others more often than non-working caregivers. No differences between working and non-working caregivers were found in negative and positive experiences. Non-working caregivers provided care more often because the care recipient wanted to be helped by them or because there was no one else available than working caregivers. About 70% of the working caregivers were able to combine work and family caregiving successfully. CONCLUSIONS: Working and non-working family caregivers of terminally ill patients at home have similar burden and positive experiences. Working family caregivers vary in their ability to combine work and care. Although the majority of working family caregivers successfully combine work and care, a substantial number struggle and need more support with care tasks at home or responsibilities at work.

Determinants of informal care-giving in various social relationships in the Netherlands.

This study investigates determinants for offering help to family members, neighbours and friends, based on the Informal Care Model. We do so in pooled representative data for the Netherlands collected in 2014 and 2016 (persons >17 years, n = 13,165). One-third provides informal care to a person with health problems or impairments: partners (4%, n = 671), parents or children (16%, n = 2,381), distant relatives (6%, n = 858), friends or neighbours (6%, n = 839). Marginal effects show differences in the associations of care-giving relationships with sociodemographic factors, barriers and beliefs. Helping a partner is related to age, gender (older people and men are more likely to help) and household composition (singles help less often). Care for close family is given often by 45-64 year olds, women, multiperson households and those with strong family beliefs. Helping second-degree relatives correlates with age (young people help more often), barriers (those living with children help less often) and beliefs (people with professional background in care and people who attend church or mosque helping more often). Providing non-kin care is associated with age and education level (young people less likely to help, people with a high education more likely), barriers (having a fulltime job) and beliefs (work experience in care, church or mosque attendance and norms). The supply of care to partners and close family is mainly associated with sociodemographic factors and barriers while the provision of care to distant family and non-kin is also correlated with beliefs. If desirable policy is to create more informal care, investment in the combination of work and informal care, childcare and supportive arrangements for older community living couples is recommended. It also might be worthwhile to enhance beliefs about the usefulness of helping each other in times of need.

Informal caregivers' judgements on sharing care with home care professionals from an intersectional perspective: the influence of personal and situational characteristics.

The European policy emphasis on providing informal care at home causes caregivers and home care professionals having more contact with each other, which makes it important for them to find satisfying ways to share care. Findings from the literature show that sharing care between caregivers and professionals can be improved. This study therefore examines to what degree and why caregivers' judgements on sharing care with home care professionals vary. To improve our understanding of social inequities in caregiving experiences, the study adopts an intersectional perspective. We investigate how personal and situational characteristics attached to care judgements are interwoven. Using data of the Netherlands Institute for Social Research, we conducted bivariate and multivariate linear regression analysis (N = 292). We combined four survey questions into a 1-4 scale on 'caregiver judgement' (α = 0.69) and used caregivers' personal (such as gender and health status) and situational characteristics (such as the care recipient's impairment and type of care) as determinants to discern whether these are related to the caregivers' judgement. Using a multiplicative approach, we also examined the relationship between mutually constituting factors of the caregivers' judgement. Adjusted for all characteristics, caregivers who provide care to a parent or child with a mental impairment and those aged between 45 and 64 years or with a paid job providing care to someone with a mental impairment are likely to judge sharing care more negatively. Also, men providing care with help from other caregivers and caregivers providing care because they like to do so who provide domestic help seem more likely to be less satisfied about sharing care. This knowledge is vital for professionals providing home care, because it clarifies differences in caregivers' experiences and hence induce knowledge how to pay special attention to those who may experience less satisfaction while sharing care.

The impact of conscientiousness, mastery, and work circumstances on subsequent absenteeism in employees with and without affective disorders.

BACKGROUND: High numbers of employees are coping with affective disorders. At the same time, ambitiousness, achievement striving and a strong sense of personal control and responsibility are personality characteristics that are nowadays regarded as key to good work functioning, whereas social work circumstances tend to be neglected. However, it is largely unkown how personality characteristics and work circumstances affect work functioning when facing an affective disorder. Given the high burden of affective disorders on occupational health, we investigate these issues in the context of affective disorders and absenteeism from work. The principal aim of this paper is to examine whether particular personality characteristics that reflect self-governance (conscientiousness and mastery) and work circumstances (demands, control, support) influence the impact of affective disorders on long-term absenteeism (>10 working days). METHODS: Baseline and 1-year follow-up data from 1249 participants in the Netherlands Study of Depression and Anxiety (NESDA) in 2004-2006 was employed. Multivariate logistic regression analyses were performed, including interaction effects between depressive, anxiety, and comorbid disorders and personality and work circumstances. RESULTS: In general, mastery and conscientiousness increased nor diminished odds of subsequent long-term absenteeism, whereas higher job support significantly decreased these odds. Interaction effects showed that the impact of affective disorders on absenteeism was stronger for highly conscientious employees and for employees who experienced high job demands. CONCLUSIONS: Affective disorders may particularly severely affect work functioning of employees who are highly conscientious or face high psychological job demands. Adjusting working conditions to their individual needs may prevent excessive work absence.

Developments in home-care use. Policy and changing community-based care use by independent community-dwelling adults in the Netherlands.

Reforms have recently been introduced in the Dutch care system in order to constrain the rising expenditure on long-term care. In this study we examined changes in community-based care use between 2004 and 2011 and changes in the explanatory effects of its determinants (health, personal and facilitating factors) that may result from these reforms. The study drew on care use registration data linked to data from national health surveys and income data from the tax authorities. Changes in community-based care use determined by health, personal and facilitating factors between 2004 and 2011 were studied. Changes in determinants were investigated by incorporating time-interaction terms of each determinant in logistic regression models. The main findings show among other things that the use of community-based care did not increase between 2004 and 2011 if allowances made for the increase in the number of (elderly) older people. The role of income and household composition has changed the most (and to a lesser extent the role of age and physical impairments). Care use decreased among individuals with high incomes and increased among single persons. The changes in community-based care use and in the role of income and household composition could be due to changes in eligibility for care, in which the applicant's personal situation is given a more prominent role alongside health considerations.

Depressive and anxiety disorders on-the-job: the importance of job characteristics for good work functioning in persons with depressive and anxiety disorders.

This study examines the importance of job characteristics on absence and on-the-job performance in a large group of employees with diagnosed depressive and anxiety disorders. In a sample of 1522 employees (1129 persons with and 393 persons without psychopathology) participating in Netherlands Study of Depression and Anxiety (NESDA, n=2981) we examined associations between job characteristics and work functioning (absenteeism and work performance) in multinominal logistic regression models. Job characteristics were working hours, psychosocial working conditions and occupational status. As expected, depressed and anxious patients were at significantly elevated risk for absenteeism and poor work performance. In analyses adjusted for psychopathology, absenteeism and poor performance were significantly lower among persons reporting high job support, high job control, less working hours, self-employed and high skilled jobs. Associations were comparable between persons with and without psychopathology. High job support, high job control and reduced working hours were partially related to work functioning in both workers with- and without-psychopathology. Since depressed and anxious employees are at a substantially increased risk for absenteeism and poor work performance, strategies that improve job support and feelings of control at work may be especially helpful to prevent poor work functioning in this at-risk group of employees.

The contribution of working conditions and social support to the onset of depressive and anxiety disorders among male and female employees.

Poor working conditions may be an important source of stress and may therefore contribute to the development of depressive and anxiety disorders. Social support may act as a buffer and protect against the development of depression or anxiety in the face of poor working conditions. With longitudinal data from the Netherlands Mental Health Survey and Incidence Study (NEMESIS), the effect of working conditions and social support on the incidence of depressive and anxiety disorders was examined among 2646 working men and women, aged 18 through 65 years. Three dimensions of self reported working conditions were assessed: psychological demands, decision latitude and job security. Social support was assessed through validated scales for daily emotional support. About 10.5% of working women and 4.6% among working men developed an incident depressive and/or anxiety disorder over 2 years. Psychological demands predicted the incidence of depressive and anxiety disorders in both men and women (RR per score increase=2.29, 95% CI: 1.44-3.63), whereas decision latitude and job security did not. Social support protected against the incidence of depressive and anxiety disorders. This effect was stronger for men compared to women. Social support did not buffer the unfavorable mental effect of working conditions. Women were more likely to report low levels of decision latitude, whereas men reported higher psychological demands. Working conditions did not explain sex differences in the incidence of depressive and anxiety disorders.