Perceived stress,resilience, and health‐related quality of life among Parkinson's disease caregivers in Mexico

The stress process model of caregiving posits that caregivers' internal psychosocial resources may serve as buffers between the stress associated with caregiving and well‐being. Empirical support for the stress process model exists for several caregiving contexts, but little research has investigated the Parkinson's disease caregiving experience in Mexico. Using a cross‐sectional, correlational design, the objective of this study was to examine whether resilience moderates the relation between perceived stress and health‐related quality of life (HRQOL) among Parkinson's disease caregivers in Mexico. Data were collected from April 2015 to February 2016 during outpatient neurology appointments in Mexico City, Mexico. Participants included informal caregivers (N = 95) for a family member with Parkinson's disease. Participants completed a battery of questionnaires assessing their level of perceived stress, resilience, and HRQOL. Regression analyses indicated that resilience moderated the inverse relation between perceived stress and mental HRQOL. However, contrary to hypotheses, resilience did not moderate the relation between stress and physical HRQOL. Findings shed light on resilience as a potential protective factor for mental HRQOL among Parkinson's disease caregivers in Mexico and indicate that resilience may be beneficial to target in mental health promotion interventions.     

Family caregiving and emotional strain: associations with quality of life in a large national sample of middle-aged and older adults

Purpose  This study examined the quality of life correlates of family caregiving and caregiving strain in a large national epidemiological sample. Methods  Structured telephone interviews were conducted with 43,099 participants as part of the REasons for Geographic and Racial Differences in Stroke (REGARDS) study. Participants completed the 12-item short form health survey (SF-12) and brief measures of depressive symptoms, social contacts, and caregiving strain. Results  Family caregiving responsibilities were reported by 12% of participants. Caregivers reported more quality of life problems than noncaregivers, but these effects were largely dependent on the perceived level of caregiving strain. High strain caregivers reported more problems with emotional distress, worse physical functioning, and fewer social contacts than noncaregivers. Conversely, caregivers who reported no strain from caregiving reported better quality of life than noncaregivers. Caregiving strain effects were not due to demographic differences or to more objective indicators of caregiving demand. Conclusions  Psychological and social indices of quality of life indicate prevalent problems among family caregivers who have experienced high strain from their caregiving responsibilities. Public health programs for disabled individuals should include assessments of strain on family caregivers and support services for those who report high levels of caregiving strain.     

“Caregiving is a full‐time job” impacting stroke caregivers' health and well‐being: A qualitative meta‐synthesis

Family caregivers contribute to the sustainability of healthcare systems. Stroke is a leading cause of adult disability and many people with stroke rely on caregiver support to return home and remain in the community. Research has demonstrated the importance of caregivers, but suggests that caregiving can have adverse consequences. Despite the body of qualitative stroke literature, there is little clarity about how to incorporate these findings into clinical practice. This review aimed to characterise stroke caregivers' experiences and the impact of these experiences on their health and well‐being. We conducted a qualitative meta‐synthesis. Four electronic databases were searched to identify original qualitative research examining stroke caregivers' experiences. In total, 4,481 citations were found, with 39 studies remaining after removing duplicates and applying inclusion and exclusions criteria. Articles were appraised for quality using the Critical Appraisal Skills Programme (CASP), coded using NVivo software, and analysed through thematic synthesis. One overarching theme, ‘caregiving is a full‐time job’ was identified, encompassing four sub‐themes: (a) restructured life, (b) altered relationships, (c) physical challenges, and (d) psychosocial challenges. Community and institution‐based clinicians should be aware of the physical and psychosocial consequences of caregiving and provide appropriate supports, such as education and respite, to optimise caregiver health and well‐being. Future research may build upon this study to identify caregivers in most need of support and the types of support needed across a broad range of health conditions.     

'I felt I have grown up as an adult': caregiving experience of children affected by HIV/AIDS in China

Background The growing global epidemic of HIV/AIDS has a significant impact on the lives of both people living with HIV/AIDS and their family members including children. Children of parents with HIV/AIDS may experience an increased responsibility of caregiving in family. However, limited data are available regarding the caregiving experience and its impact on psychosocial well‐being among these children. This study was designed to address these issues by using qualitative data collected from children affected by HIV/AIDS in China. Methods The qualitative data were collected in 2006 in rural central China, where many residents were infected with HIV/AIDS through unhygienic blood collection procedures. In‐depth individual interviews were conducted by trained interviewers with 47 children between 8 and 17 years of age who had lost one or both parents to AIDS. Results Findings of this study suggest that many children affected by AIDS had experienced increased responsibilities in housework and caregiving for family members. Such caregiving included caring for self and younger siblings, caring for parents with illness and caring for elderly grandparents. Positive impacts from children's participation in family caregiving included personal growth and emotional maturity. Negative consequences included physical fatigue, psychological fear and anxiety and suboptimal schooling (dropping out from school, repeated absence from school and unable to concentrate in class). Conclusion While the increased caregiving responsibilities among children reflected some cultural beliefs and had some positive effect on personal growth, the caregiving experience generally negatively effected the children's physical and mental health and schooling. The findings in the current study suggest that community‐based caregiving support is necessary in areas with high prevalence of HIV and limited resources, especially for the families lacking adult caregivers. In addition, social and psychological support should be made available for children participating in family caregiving.     

Understanding “Good Days” and “Bad Days”: Emotional and Physical Reactivity Among Caregivers for Elder Relatives*

Abstract: Using a daily diary design, we examined fluctuations in caregiver well‐being; how day‐to‐day variations in stressors related to the caregiving experience are linked to fluctuations in well‐being; and whether caregivers who are women, or high on certain personality traits (e.g., neuroticism) are more susceptible to emotional/physical health fluctuations in the face of daily stressors. Sixty‐three caregivers reported on eight consecutive days. Multilevel analyses (Hierarchical Linear Modeling) indicated significant within‐person reactivity. On days when caregivers faced more tasks than usual, more care recipient behavior problems, or more family disagreements regarding care, they experienced more depressive symptoms, feelings of burden, and physical symptoms. Some within‐person patterns of reactivity were moderated by gender and personality. Implications for community interventions for caregivers are discussed.     

Impact of paediatric human immunodeficiency virus infection on children's and caregivers' daily functioning and well-being: a qualitative study

Background Human immunodeficiency virus (HIV) infection impacts not only upon the physical health of affected children, but also their psychosocial functions, family relationships and economical status. Caregivers are confronted with complex challenges related to the physical, emotional and financial demands of raising these children. The purpose of this study was to enhance our understanding of the impact of HIV disease on both children's and caregivers' well‐being, using a qualitative inquiry approach. Methods A total of 35 primary caregivers of HIV‐infected children participated in in‐depth interviews. The issues discussed included the major negative impacts on children's daily functioning and well‐being, and the perceived caregiver/parental burden. Participants included parents (40%), grandparents (22.8%), other relatives (e.g. uncles, aunts) (34.3%) and one foster parent (2.8%). Results Qualitative analysis revealed that the major negative impacts of HIV/AIDS included physical symptoms, school performance and relationship changes. The major negative impacts on caregivers' well‐being included acceptance of the diagnosis, dealing with the financial burden and keeping the diagnosis private. Conclusions Approaches are needed to address these challenges by enhancing families' coping skills and building supportive networks.     

Caregiving work: The experiences and needs of caregivers in Australia

A considerable evidence base exists demonstrating the high prevalence of family caregiving in the community; however, there is a paucity of in‐depth research examining the impact of family caregiving on the living and employment needs of those providing this unpaid service. This study employed a qualitative interview design with purposive sampling to examine the experiences of family caregivers, in order to examine how family caregiving decisions are made, the nature and challenges of caregiving work, and living and work supports that may enhance the caregiving experience. A sample of 12 adults providing care and assistance to family members with a range of disabilities, chronic conditions and long‐term illnesses were interviewed. The results showed that family caregivers ‘fall into’ the caregiving role and often continue to provide care indefinitely without pay and with little or no financial support from others. In describing the best aspects of their experience many caregivers talked about helping their care recipient remain in their home and maintain their independence. In describing the worst aspects of their experience, all referred to the living and financial challenges of the caregiving work, and many highlighted the impact of their caregiving work on their employment and career needs. In conclusion, there is a need for public policies, programs and health services in Australia to better respond to the living, financial and support needs of family caregivers as health service providers, as well as their employment, development and career needs which are seriously impacted upon by caregiving work.     

Family Caregivers of Older Adults: A Life Span Perspective

Abstract: When faced with changes in physical health, cognition, and daily functioning, older adults most frequently rely on family members for instrumental support and more intense care activities. Using a life span perspective as our guiding framework, we identified several developmental themes across the late‐life caregiving research including individual well‐being, relational effects, and caregiver growth. In addition, we examined the effectiveness of education and intervention programs as well as policy initiatives designed to assist middle‐aged and older family members care for their aging relatives. The multiple dimensions of, influences on, and the variability in response to the caregiving experience presents multilayered challenges that can best be addressed through the intentional integration of sound research investigations, practice initiatives, and policy directives.     

Caring for persons with schizophrenia at home: examining the link between family caregivers' role distress and quality of life

This article re‐examines the link between role distress and quality of life of family caregivers of a loved one with schizophrenia by exploring the impact of role overload (defined as spending 7 or more hours daily looking after the care recipient). Role theory and symbolic interactionism provide the conceptual background to this study. The research question is: under what conditions does role distress reduce quality of life? The answer helps us identify circumstances under which caregivers may be able to carry out their stressful caregiving role while minimising a decline in their quality of life. The data are from a purposive sample of 47 family caregivers in Singapore who were interviewed in person using a semi‐structured questionnaire. The data analysis includes non‐parametric tests, exploratory factor analysis and relative risks estimates. The findings show that the inverse association between role distress and quality of life found in most studies of family caregivers changes when hours of care are taken into consideration. While role distress is found among all family caregivers it only reduces the family caregiver's quality of life in situations of role overload. The implications for the situation of family caregivers are discussed.     

Experiences of family caregivers regarding a community-based care- and case-management intervention. A qualitative study

Family caregivers play an essential role in healthcare for elderly people in primary care settings. The complexity of geriatric patients as well as the fragmentation of healthcare systems can lead to a burden for family caregivers, which can affect their physical and psychological health as well as social relationships, economic productivity and quality of caregiving. Care- and case-management offers a possibility to support, empower and navigate family caregivers through healthcare systems in order to reduce their own burden. The project RubiN (Continuous care in a regional network) was developed to provide regional care- and case-management for outpatient care of the elderly (age >70 years) in a primary care setting in Germany. The aim of this qualitative study was to explore experiences and attitudes of family caregivers of geriatric patients regarding the community-based care- and case-management intervention RubiN. Telephone interviews with a purposeful sample of 21 family caregivers enlisted in all RubiN networks were conducted between March and May 2020 and were followed by qualitative content analysis. The main categories, which emerged were namely: (1) current healthcare situation and (2) experiences with RubiN. Main findings suggest that participants in this study valued the provided support and experienced a sense of relief. However, some participants were disappointed with RubiN and the included support by care- and case-managers. A care- and case-management affected caregiving per se as well as the patient's and family caregiver's well-being. Important aspects contributing to these findings were a continuous relationship, training and expertise of the care- and case-managers. Establishing networks between the patients, family caregivers, care- and case-managers and healthcare providers were key components as well as a good explanation about RubiN itself for family caregivers. Therefore, a community-based care- and case-management can play an important role in detecting, facilitating and preventing family caregiver burden.     

The caring experience in multiple sclerosis: Caregiving tasks,coping strategies and psychological well‐being

Informal caregivers play a crucial role in supporting persons with multiple sclerosis (MS), a neurodegenerative disease resulting in progressive worsening of physical and cognitive functioning. While research extensively showed that caregiving workload can be perceived as burdensome, little attention was devoted to the relation connecting workload and caregivers’ well‐being. Building on previous literature on stress and coping, the aim of this study was to test the mediational role of coping between caregivers’ tasks and well‐being. A group of 680 caregivers of persons with MS (M age = 46.45; 51.2% women) was recruited in eight Italian MS centres between June 2015 and December 2016. Caregiving tasks related to basic activities of daily living (ADL), instrumental ADL, psycho‐emotional and social‐practical care were assessed through the Caregiving Tasks in MS Scale; coping strategies (avoidance, criticism and coercion, practical assistance, supportive engagement, positive reframing) were investigated through the Coping with MS Caregiving Inventory; well‐being was evaluated through the Psychological Well‐Being Scales. Analyses substantiated a multi‐mediation model including tasks in basic ADL, psycho‐emotional and social‐practical care, and the coping strategies avoidance, criticism/coercion, supportive engagement, positive reframing. Basic ADL care was negatively related to psychological well‐being through lower use of supportive engagement and positive reframing. By contrast, psycho‐emotional and social‐practical tasks were both negatively and positively related to psychological well‐being, through higher use of avoidance and criticism/coercion as well as supportive engagement and positive reframing. Findings suggest that caregiving tasks are not solely detrimental to well‐being, but they may also provide a positive contribution through the adaptive coping strategies supportive engagement and positive reframing. Findings also highlighted task‐specific areas that could be targeted in intervention in order to effectively lighten burden and promote well‐being among caregivers.     

Preparedness for caregiving: A phenomenological study of the experiences of rural Australian family palliative carers

The care of people with life‐limiting illnesses is increasingly moving away from an acute setting into the community. Thus, the caregiver role is growing in significance and complexity. The importance of preparing and supporting family caregivers is well established; however, less is known about the impact of rurality on preparedness and how preparedness shapes the caregiving continuum including bereavement. The aim of this study, conducted in 2017, was to explore how bereaved rural family palliative carers described their preparedness for caregiving. Interpretative phenomenological analysis was employed following semi‐structured interviews with four women and six men (N = 10, aged 55–87 years). Participants were recruited voluntarily through past engagement with a Regional Specialist Palliative Care Consultancy Service in Australia. The experiences of caregivers illustrated a lack of preparedness for the role and were characterised by four major themes: Into the unknown, Into the battle, Into the void and Into the good. The unknown was associated with a lack of knowledge and skills, fear, prognostic communication, exclusion, emotional distress and grief experience. Battles were experienced in a number of ways: intrapsychically (existing within the mind), through role conflict and identity; interpersonally with the patient, clinician and family; and systematically (against health, financial and legal systems). The void was felt during isolation in caregiving, in relinquishing the role, in bereavement and in feeling abandoned by service providers. Positive experiences, such as being valued, included and connected to supports, and the fostering of closer relationships and deeper meaning, occurred less frequently but temporarily buffered against negative aspects. Implications from this study for policy and practice centre on the frequent, purposeful and genuine engagement of caregivers. Services and clinicians are encouraged to enhance communication practices, promote meaningful inclusion, address access issues and enhance support at role relinquishment.     

Adolescents' Precocious and Developmentally Appropriate Contributions to Their Families' Well‐Being and Resilience in Five Countries

An exploratory qualitative study of 16 disadvantaged youth in 5 countries suggests that making both precocious and developmentally appropriate contributions to their families' well‐being is advantageous to adolescents coping with chronic adversity. All youth were known to be doing well (as identified by community advisors) and showed patterns of contribution that provided instrumental support to parents, siblings, and extended family members in culturally relevant ways. Data were gathered using in‐depth interviews, photo‐elicitation, and the filming of 1 full day in the life of each youth. Youth reported that their experiences of precocious (synonymous with processes of adultification) and developmentally appropriate contribution facilitate their access to resources that nurture and sustain their well‐being. This process of contribution is discussed as one aspect of resilience. Both youth and their caregivers coconstructed acts of contribution as helpful to young people's psychosocial development in contexts where youth are exposed to multiple risks.     

The labor of caregiving: a theoretical model of caregiving during potentially fatal illness

The purpose of this study was to explore the influence that chronic and potentially fatal illness has on the caregiving process over time. Data were collected through in-depth interviews with 26 family caregivers of people experiencing AIDS or advanced cancer over a 4-month period. Constant comparative analysis was used to analyze the data. A substantive theory of family caregiving for people with life-threatening illnesses was developed around a core organizing theme: the labor of caregiving. Four phases emerged: becoming a caregiver, taking care, midwifing the death, and taking the next step. This study validates the taking-care or "tasks" aspect of caregiving, revealing that issues and tasks vary in each phase of caregiving. The key role of the caregiver in contributing to the quality of life of the ill person was apparent in the initial phase of an illness as well as at the time of death.     

Family caregiving in advanced chronic organ failure

ObjectivesTo assess caregiver burden as well as positive aspects of family caregiving in advanced chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), and chronic renal failure (CRF).DesignCross-sectional observational study.SettingPatients recruited at the outpatient clinics of academic and general hospitals in the Netherlands.ParticipantsPatients with advanced COPD (n = 73), CHF (n = 45), and CRF (n = 41) and their family caregivers.MeasurementsCaregiver burden and positive aspects of caregiving were assessed using the Family Appraisal of Caregiving Questionnaire for Palliative Care and were compared among family caregivers of patients with COPD, CHF, or CRF using linear regression analysis while controlling for characteristics of patients and family caregivers.ResultsMost family caregivers were female partners of participating patients. Caregiver distress and caregiver strain scores were relatively low, whereas scores for positive caregiving appraisals and family well-being were relatively positive. Caregiver strain, positive caregiving appraisals, and family well-being were comparable for family caregivers of patients with COPD, CHF, or CRF. Caregiver distress was higher for family caregivers of patients with COPD than CHF. The experience of caregiving was influenced by being the patient's spouse, patient's psychological symptoms, and the presence of comorbidities.ConclusionsFamily caregiving for patients with COPD, CHF, or CRF should not only be seen as a burden, but also as a positive experience. To support family caregivers, attention should be paid to caregiver burden and the positive aspects of family caregiving.     

Open Communication Between Caregivers and Terminally Ill Cancer Patients: The Role of Caregivers' Characteristics and Situational Variables

This study assesses caregivers' perceived level of open communication about illness and death with their terminally ill relatives and examines the contribution of caregivers' characteristics and situational variables to the explanation of open communication. A total of 236 primary caregivers of terminal cancer patients participated in the study. Level of open communication was measured by 6 items clustered into 1 factor. Caregivers' characteristics were composed of demographic variables, personality traits, and negative emotional reactions to caregiving. The situational variables included the duration and intensity of caregiving, and perceived functioning and suffering of the patient. Caregivers experienced substantial difficulties in communicating with patients about illness and death. Level of open communication was explained by caregivers' emotional reactions (emotional exhaustion, depression) and self-efficacy, as well as by the duration of caregiving. Intervention programs for health professionals need to focus on prevention, identification, and treatment of caregivers at risk for negative reactions to caregiving.     

Negative and Positive Caregiving Experiences: A Closer Look at the Intersection of Gender and Relationship

Using data from the 2004 wave of the National Long‐Term Care Survey, we examined how negative and positive caregiving experiences differ by caregivers' gender and relationship to care recipients. We further considered how their caregiving experiences are affected by caregivers' demographic characteristics, care recipients' problem behavior and dependency, caregivers' involvement, reciprocal help from care recipients, and social support available for caregivers. We found that female and adult‐child caregivers, in general, reported having had more negative experiences than male and spouse caregivers, respectively. Wife caregivers were least likely to report positive experiences. We also found different risk factors for negative and positive caregiving experiences, and these factors varied depending on caregivers' gender and relationship to the care recipient. The findings underscore the heterogeneity of caregiving experiences. To sustain informal care, state and local agencies need to tailor services to wife, husband, daughter, and son caregivers' unique needs.     

The influence of family functioning on the consumption of unhealthy foods and beverages among 1- to 12-y-old children in Victoria,Australia

ObjectiveFamily functioning, which reflects how well family members communicate and interact with each other, is associated with childhood overweight and obesity, but its association with children's eating behaviors remains unclear. The aim of this study was to examine the association between family functioning and unhealthy food and beverage consumption among children ages 1 to 12 y old.MethodsAs part of the Victorian Child Health and Wellbeing study, a random sample of 4602 caregivers of children completed an interview during a single telephone interview in 2006. Caregivers reported on their child's consumption of three types of unhealthy foods and beverages, and responses were recoded into weekly consumption of potato crisps and chips, monthly consumption of takeaway foods, and daily consumption of sweet beverages. Family functioning included general functioning (α = 0.89) and parental psychological distress (α = 0.78).ResultsConsumption of potato crisps and chips occurred, on average, twice a week, while takeaway foods were consumed an average of three times per month. Consistently and controlling for other covariates, male caregivers had children who consumed takeaway foods more frequently and who drank more daily cups of sweet beverages. Caregiver education and living in a single-parent household were consistently associated with poorer eating habits. In all models, general family functioning and parental psychological distress were associated with poorer eating habits.ConclusionsIn addition to traditional methods for improving diet, family-based interventions need to target more general aspects of the family's and caregiver's functioning to improve dietary intake.