This dissertation consists of three papers studying the relationship between paid leave policies and work and informal care outcomes among older workers. Paper one investigates whether different types of paid leave provided by employers are associated with the supply of elder care. Paper two examines the role of paid leave in determining labor market outcomes for older workers with a family member who experiences a health decline. Paper three analyzes the case in South Korea -- how leave policies influence labor market outcomes for older workers with a spouse who experiences a health decline.

Background: Providing unpaid care for a spouse, partner, relative or friend is a day-to-day reality. Carers in the context of cancer have a similar profile to carers in the UK. Lung Cancer is a low profile cancer but yet is the second most common cancer in Scotland associated with social deprivation, poverty, therapeutic nihilism, and stigma. The significant contribution by carers of people affected by cancer has resulted in their recognition as “partners in the delivery of care”.   Aim: To explore the experiences of the diagnosis and treatment of lung cancer from a carer’s perspective.   Methods: Unstructured interviews were undertaken with 15 carers of relatives with a lung cancer diagnosis. The individual with lung cancer identified carers. Data were analysed using a qualitative design and analysis in the grounded theory tradition.  Findings: Analysis of data from the carers indicated that whilst carers are engulfed by the cancer experience and face barriers and deficits of care, they have illustrated and demonstrated that they have their own assets, which are further enhanced by community and societal resources. Five categories were identified and a sense of carer resilience emerged. Subsequently the theory developed was fostering carer resilience in lung cancer care.     Discussion: Resilience emerged in carers at a time of increasing interest within the wider context of health and social care. Although resilience is not a new concept there are a lack of studies including carers in a cancer context and until now none in lung cancer. Resilience cannot and should not be fostered by one professional group and therefore an opportunity exists for collaboration between agencies involved in the provision of services for carers of relatives with cancer. The limitations of the study are acknowledged.   Conclusion: The findings from this study have implications for practice beyond healthcare and as Scotland embarks upon health and social care integration it is perhaps an opportune time to develop that. Findings highlighted the potential, strengths, interests, abilities and capacity of carers rather than their limitations. Future research could look specifically at resilience in carers of relatives with lung cancer in addition to testing interventions to enhance carers’ resilience.

The purpose of this study was to test Lazarus and Folkman's (1984) theoretical framework of stress and coping as it applied to daughters who have parents living in care facilities. Specifically, the effects of personal and environmental influences, cognitive appraisals, and coping on positive affect and depression were examined in two subsamples of daughters: daughters with parents with dementia (n=100) and daughters with parents with other health difficulties (n=89). The data were collected from a volunteer sample of 189 daughters (M age 51.3) in the Greater Vancouver region. Daughters completed three parts of a questionnaire over a six-week period. Specific variables of interest included prior communal behaviors, support satisfaction, care satisfaction, appraisals (perceived control and perceived stress), coping strategies (relationship-focused, problem-focused, emotionfocused), positive affect, and depression. Negative affectivity (NA) was examined as a confounding variable. Path analysis using LISREL VIII (Joreskog & Sorbom, 1993) was undertaken to examine the hypothesized relationships between antecedent, mediating, and outcome variables that are central to Lazarus and Folkman's (1984) theoretical framework. Initial results revealed a poor fitting model for both the dementia and other health groups. However, a revised model, taking into account theoretical and empirical support for a direct relationship between support satisfaction and emotion-focused coping, provided an acceptable fit for both groups. The overall pattern of relationships for the variables in the model offer some support for the hypothesized model and for Lazarus and Folkman's theoretical assumptions. For both groups, greater control over the stressful aspect of facility care was related to more problem-focused coping, which in turn was related to more positive affect. For the other health group, greater appraised stress was related to more emotion-focused coping, which was in turn was related to greater depression. Among daughters with parents with dementia, low levels of care satisfaction and high communal behaviors were associated with greater perceived control. The hypothesized mediational role of appraisals and coping was not supported. The results point to the importance of understanding caregiving in the context of chronic stress and the unique contribution of personality, health type, and positive aspects of caregiving to a daughter's stress process.

HIV/AIDS has affected families in a profound and tragic way. Children whose parents have succumbed due to HIV/AIDS related infections have to be cared for by their relatives. This study focused on the experiences of primary caregivers of adolescents who are living with HIV in a semi-rural area of Eastern Cape Province, Grahamstown. There is a dearth of literature that is addressing the well-being, experiences and challenges of primary caregivers of adolescents living with HIV. Adolescence is a complex life stage during which adolescents usually present challenging behaviours and are grappling with moral issues. Caregiving to these youngsters who are burdened with HIV infection places additional demands on caregivers, especially so when they are experiencing poverty and poor social and welfare support. A qualitative study was most appropriate to explore and describe the experiences of adolescents infected with HIV. The population of this study was the primary caregivers of adolescents caring for adolescents with HIV in the area of Grahamstown, who are between 11 to 19 years old. A purposive sample of nine primary caregivers of adolescents living with HIV was selected. Data was collected by conducting individual interviews, using a semi-structured interview schedule. Data was analysed thematically according to prescribed theoretical guidelines. Data was verified by means of guidelines for the truth value, applicability, consistency, and neutrality of the study. The findings of the study indicated that primary caregivers experience that caring for adolescents who are living with HIV places a huge burden due to adolescents' negative behaviour, HIV stigma and discrimination, poor support from their families, being confronted with adolescents' emotional issues that they are not capacitated to deal with, and no adequate community resources to assist them. The challenges primary caregivers experience lead to negative effects on their health status. The findings of the study could be useful for informing intervention programmes that are targeting this group and policy development, and implementation of programmes benefiting both infected adolescents and their primary caregivers.

Human Immune Deficiency Virus (HIV), which results in Acquired Immune Deficiency Syndrome (AIDS), has many manifestations. Literature reveals that some of these manifestations may compromise the infected individual’s sense of well-being and negatively impact on health related quality of life. As the number of people living with HIV/AIDS disease grows, so does the need for their care. In the early days of the AIDS epidemic, care was primarily handled by special agencies, hospitals and clinics. These agencies have been inundated with the demands of people living with HIV/AIDS, while their resources are shrinking. As it stands now, the total assistance given to people living with HIV/AIDS is provided by relatives and this responsibility of caregiving will more increasingly rest with families. This situation is particularly salient for the rural community in South Africa, which has been disproportionately affected by the AIDS epidemic. AIDS has a tremendous impact on the entire family system, particularly on the individual who has primary responsibility for caregiving. The caregiver must cope with many circumstances that are frustrating and often beyond their control. Caring for a Person Living with HIV/AIDS (PLWHA) appears to be a major stressor in the lives of caregivers, and can be very demanding, impacting on carers financially, physically, emotionally and socially. Given the lack of research on HIV/AIDS family caregiving from a salutogenic approach, this study aimed to explore and describe the sense of coherence and coping of family caregivers of HIV/AIDS patients in the Kwazakhele area in Port Elizabeth. The sample consisted of 50 participants aged between 21 and 65 years, recruited via the Kwazakhele Masizakhe Project. An exploratory-descriptive design was employed. Data was obtained by a biographical questionnaire, the Coping Resources Inventory (CRI) and the Sense of Coherence (SOC-29) Questionnaire. A non-probability convenience sample of adult male and female family caregivers were sampled. Descriptive statistics and correlation coefficients were utilized to describe and explore the coping and sense of coherence of the family caregivers and the correlation between these constructs, respectively. The data obtained from the biographical questionnaire was analysed by using descriptive statistics and frequency counts. Key findings include the following: Results from the coping resources measure indicated that this sample perceived themselves as having an average level of coping resources. The sample tended to rely more readily on spiritual resources and less on cognitive resources. Results from the SOC-29 revealed fairly high mean scores. There is no positive relationship between the SOC-29 and the CRI for the current sample. No significant relationship existed between the SOC and the subscales of the CRI. Suggestions are made for future research, the limitations and value of research were outlined.

The purpose of this study was to test Lazarus and Folkman's (1984) theoretical framework of stress and coping as it applied to daughters who have parents living in care facilities. Specifically, the effects of personal and environmental influences, cognitive appraisals, and coping on positive affect and depression were examined in two subsamples of daughters: daughters with parents with dementia (n=100) and daughters with parents with other health difficulties (n=89). The data were collected from a volunteer sample of 189 daughters (M age 51.3) in the Greater Vancouver region. Daughters completed three parts of a questionnaire over a six-week period. Specific variables of interest included prior communal behaviors, support satisfaction, care satisfaction, appraisals (perceived control and perceived stress), coping strategies (relationship-focused, problem-focused, emotionfocused), positive affect, and depression. Negative affectivity (NA) was examined as a confounding variable. Path analysis using LISREL VIII (Joreskog & Sorbom, 1993) was undertaken to examine the hypothesized relationships between antecedent, mediating, and outcome variables that are central to Lazarus and Folkman's (1984) theoretical framework. Initial results revealed a poor fitting model for both the dementia and other health groups. However, a revised model, taking into account theoretical and empirical support for a direct relationship between support satisfaction and emotion-focused coping, provided an acceptable fit for both groups. The overall pattern of relationships for the variables in the model offer some support for the hypothesized model and for Lazarus and Folkman's theoretical assumptions. For both groups, greater control over the stressful aspect of facility care was related to more problem-focused coping, which in turn was related to more positive affect. For the other health group, greater appraised stress was related to more emotion-focused coping, which was in turn was related to greater depression. Among daughters with parents with dementia, low levels of care satisfaction and high communal behaviors were associated with greater perceived control. The hypothesized mediational role of appraisals and coping was not supported. The results point to the importance of understanding caregiving in the context of chronic stress and the unique contribution of personality, health type, and positive aspects of caregiving to a daughter's stress process. / Education, Faculty of / Educational and Counselling Psychology, and Special Education (ECPS), Department of / Graduate

Thesis (M. A. (Clinical Psychology)) -- University of Limpopo, 2019 / The study sought to explore and describe the lived experiences of caregivers involved in support groups whilst caring for a family member diagnosed schizophrenia in Johannesburg South, Gauteng province. A qualitative study was conducted among primary caregivers of family members diagnosed with schizophrenia and involved in support groups. Members were selected using purposive sampling and ten participants were interviewed (eight parents and two siblings of diagnosed family members). Data were collected using semi-structured interviews and analysed using interpretive phenomenological analysis (IPA). Common themes regarding the experience of caring for a family member diagnosed with schizophrenia were clearly delineated. Findings of the study revealed that the participants experienced psychosocial, emotional, and economic challenges in caring for their relatives diagnosed with schizophrenia. The findings point to problems such as psychological distress, extensive worry, subjective burden and significance of support in caring for ill family members. Findings also highlight challenges such as financial constraints and cultural factors which negatively impact the quality of caregiving for the participants’ ill relatives. The study further revealed the coping mechanisms that caregivers adopt to cope with the difficulties of caring for their schizophrenic family members. Religion and support groups were some of mechanisms a majority of participants found to be helpful for them in coping. The present study found that family members involved in the group program demonstrated improved family communication, greater confidence in their ability to help their loved ones, reduced burden and improved subjective quality of life.

Current literature regarding caregiver bereavement adjustment has advanced two competing models explaining adjustment in relation to caregiver interrole conflict: the Relief Model and Complicated Grief Model. This research has primarily focused on the experience of those providing care to dementia patients. This study tests these competing models of bereavement adjustment for husband and daughter caregivers of breast cancer hospice patients. For husbands, greater psychological strain and health strain were predictive of greater difficulty with bereavement adjustment, supporting the Complicated Grief Model of bereavement adjustment. For daughters, strain was not a significant predictor of bereavement adjustment, and thus did not support either bereavement adjustment model. While daughter caregivers experienced more role strain than husband caregivers during patient care, the degree of role strain was predictive of bereavement adjustment for husbands but not for daughters, suggesting that relationship type (husbands versus daughters) between caregiver and patient impacts which factors influence bereavement adjustment.

This study employed a qualitative hermeneutic methodology to compare and explore the stress faced by families caring for a family member with cancer or HIV/AIDS. Four 'Indian' families, two with a family member with cancer and two with a family member with HIV/AIDS, were purposiveiy sampled through NGOs in Pietermaritzburg and Durban. Generally it appeared that the illnesses brought about a range of stressors in families including fmancial and care-related stressors, role changes, difficulties accessing medical treatment, uncertainty and the psychological responses of family members. The impact of these on families was mediated by the families' abilities, social support, a variety of meaning factors and stigma. It did however, appear that families caring for a family member with HIV/AIDS had to cope with several additional burdens including coping with a more prolonged and variable period of illness, fears of infection, increased difficulties accessing medical treatment, less social support and stigma. / Thesis (M.A.)-University of Natal, Pietermaritzburg, 2002. / Konrad Schrenk

Indiana University-Purdue University Indianapolis (IUPUI) / The number of patients with chronic heart failure (HF) is at an all-time high and the incidence is expected to increase as our population ages. HF patients experience impaired cognition, exertional shortness of breath, and persistent fatigue; therefore, family members are needed to assist with their care at home. Although existing literature suggests that HF caregivers experience negative physical, mental, and social outcomes, there is a lack of studies guided by a conceptual model to determine factors associated with these outcomes. The purpose of this study was to determine factors associated with HF caregiver depressive symptoms, life changes, and quality of life guided by a conceptual model derived from Lazarus and colleagues’ transactional approach to stress. Psychometric properties of a new HF caregiver-specific quality of life (HFCQL) scale were also determined. Using a descriptive design, a convenience sample of 100 HF caregivers was interviewed by telephone using established measures along with the new HFCQL scale. The 16-item HFCQL scale, which measures physical, psychological, social, and spiritual well-being demonstrated evidence of internal consistency reliability (alpha = .89); 2-week test-retest reliability (ICC = .83); construct validity, as evaluated with factor analysis (loadings > .32) and hierarchical multiple regression (59% variance, p < .001); and criterion validity, as shown with significant (p < .001) correlations with the Bakas Caregiving Outcomes Scale (r = .73), SF-36 general and mental health (r = .45; .59), and a single overall QOL item (r = .71). Using hierarchical multiple regression, the model constructs accounted for 35% variance of depressive symptoms, 46% variance of life changes, and 59% variance of HFCQL (p < .001). Factors significantly associated with these outcomes included caregiving task difficulty, uncertainty, social support, and threat appraisal. Support for the conceptual model was provided, and potential areas for intervention development were identified. The new HFCQL scale showed potential as a quality outcome measure in HF caregivers, and might be used to screen HF caregivers for poor quality of life. Further research using the proposed conceptual model and the HFCQL scale is warranted. Tamilyn Bakas, DNS, RN, Chair