Over 40 million Americans provide unpaid support to an adult relative for tasks including accompanying them to doctor visits and/or supporting them in medical decisions. Over the past several years—and particularly amid COVID-19—there has been increasing interest and demand for caregivers to be more involved in communication with providers to support patient engagement and patient-centered care as evidenced by recent state and federal policy initiatives to expand support to caregivers. One way to improve communication between caregivers and providers is through an online medical record (patient portal), which enables patients to acquire important health information and communicate with medical providers. However, caregivers’ access to adult care recipients’ portals is limited and varies across healthcare organizations and states. The objective of this study was to determine the relationship between socio-demographic attributes and responsibilities of caregivers and likelihood of (a) communicating with recipients’ providers and (b) accessing recipients’ online records.
Background: Despite the important role that family members can play in dementia care, little is known about the association between the availability of family members and the type of care, informal (unpaid) or formal (paid), that is actually delivered to older adults with dementia in the US. Results: Using data about older adults with dementia from the Health and Retirement Study, we found significantly lower spousal availability but greater adult child availability among women versus men, non-Hispanic Blacks versus non-Hispanic Whites, and people with lower versus higher socioeconomic status. Adults with dementia and disability who have greater family availability were significantly more likely to receive informal care and less likely to use formal care. In particular, the predicted probability of a community-dwelling adult moving to a nursing home during the subsequent two years was substantially lower for those who had a co-resident adult child (11 percent) compared with those who did not have a co-resident adult child but had at least one adult child living close (20 percent) and with those who have all children living far (23 percent). Conclusions: Health care policies on dementia should consider potential family availability in predicting the type of care that people with dementia will use and the potential disparities in consequences for them and their families.
Background: Preserving patient dignity is a fundamental value in palliative care and is associated with an increased sense of meaning at end of life. The empiric Dignity Model, developed by Chochinov et al. (2002), identifies physical and psychosocial issues impacting dignity and provides guidance for dignity conserving care. Aim: This study's objectives are to explore the generalizability of the empiric Dignity Model to Chinese Canadians an immigrant population influenced by both Western and Asian values. The study will explore how dignity is culturally mediated. Design: Template analysis using NVivo was used to assess for themes and to explore new themes in focus group interviews. Participants: Three focus groups of thirty-one first generation Chinese Canadians were conducted in the community setting, in the metropolitan area of Greater Vancouver. Results: The three thematic categories of the Dignity Model were broadly supported. Themes of Family connectedness and the Confucian virtue of filial piety (duty that children have towards their parents), were found to be strongly relevant for Chinese Canadians. Subjects' acculturation within Canada led to an evolution of perception of dignity as new ideas are accepted or rejected and blended with pre-existing values. Conclusion: To the author's knowledge this is the first study on the Dignity Model done in a Chinese Canadian population. The conceptualization of dignity for first generation Chinese Canadians is influenced by both Western and Asian culture. This study highlights the unique constructs of dignity for Chinese Canadians and areas to enhance dignity preserving care in a cross-cultural context.
Purpose: Research has shown that informal carers of people living with dementia (PLWD) can be resilient in the face of caregiving challenges. However, little is known about resilience across different kinship ties. This study aims to update and build on our previous work, using an ecological resilience framework to identify and explore the factors that facilitate or hinder resilience across spousal and adult daughter carers of PLWD. Design/methodology/approach: This study conducted in-depth qualitative interviews with a purposive sample of 13 carers from North West England and analysed the data using a constructivist grounded theory approach (Charmaz, 2003). Findings: Adult daughters were motivated to care out of reciprocity, whereas spouses were motivated to care out of marital duty. Spouses had a more positive and accepting attitude towards caregiving and were better able to maintain continuity, which facilitated their resilience. Research limitations/implications: Resilience emerged on multiple levels and depended on the type of kinship tie, which supports an ecological approach to resilience. The implications of these findings are discussed. Originality/value: This paper makes a novel contribution to the literature as it uses an in-depth qualitative methodology to compare resilience across spousal and adult daughter carers of PLWD. This study adopts an ecological approach to identify not just individual-level resilience resources but also interactive community- and societal-level resources.
Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill‐health. This has resulted in a shift in the parameters of the relationship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as "reciprocity" or "mutual support." Limited information exists about these "hidden carers" and what services are available to support them. Aim: This article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member. Method: A qualitative methodology was employed using semi‐structured interviews. Nine participants with mild‐to‐moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis. Findings: Five themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing family member; support; impact of caregiving and future planning. Discussion: The needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of "in‐house" support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers.
Methods: The current study used purposeful and snowball sampling to interview 12 daughters who were care-givers to their parents with Alzheimer's disease. Data were collected through in-depth, semi-structured interviews and were analyzed using Colaizzi's descriptive phenomenological approach. Caregiving years ranged from 1 to 10 years, with a mean of 5 years. Findings: Six themes were uncovered: (a) Where Are You When I Need You?; (b) Safety First; (c) I Don't Know What to Say or How to Say It; (d) They Are Beautiful People, but They Aren't Trained; (e) Letting Go of Who They Were; and (f) It Affects Every Area of My Life. Conclusions: Findings suggest that caregiver daughters of parents with AD living at home are struggling and indicate a need for better support of caregivers. Implications for nursing practice, research, and education are significant and require a greater focus on the support of informal caregivers of persons with AD.
Background: As life expectancy for people with an intellectual disability increases, there is a growing cohort of older father carers. This study aimed to gain a more in‐depth understanding of older father carers' experiences of parenting. Methods: Semi‐structured interviews were conducted with 7 older fathers (M = 63.9 years) and analysed using constructivist grounded theory. Results: Three conceptual categories were identified. "Wearing different hats: how fathers' sense of identity had altered over the years. "Family comes first": importance placed on the family unit. "Getting on in years": the challenges faced by ageing fathers parenting their son/daughter. Conclusions: Fathers re‐evaluated their priorities and found a new identity in their parenting role, although they continued to see themselves as secondary carers. Fathers worried about the future as their health declined but drew strength from the benefits they had derived and the challenges that they had overcome to do their best for their son/daughter and their family.
Background: Despite the joy of parenting, the burden of daily caregiving for children with autism spectrum disorders (ASD) can be overwhelming and constant. Parents can expect to provide enduring care for their children with ASD. Given that the majority of individuals with autism spectrum disorders (ASD) remain in their family homes well into adulthood, often the need for assistance with activities of daily living (ADLs) is placed on parents. Providing ongoing support to adult children who have difficulty with completing ADLs can increase parental caregiving demands. Therefore, the purpose of this study was to examine the relationship between the ability of adults with ASD to perform ADLs with parental perceptions of caregiver burden. Methods: Quantitative analysis of cross-sectional multi-state data gathered electronically using Qualtrics from 320 aging parents of adults with ASD was conducted. Regression models were fit to examine the association of ADL challenges with total caregiver burden and its four domains (emotional, financial, time dependence, and developmental). Results: Parental perceptions of caregiver burden decreased, particularly time dependence and developmental burden, when adult children were less dependent in ADLs, even after adjusting for parental health and behavioral challenges. Conclusions: Findings support the need for family-centered interventions to improve the capacity of adults with ASD to perform ADLs independently.
Background: As family caregivers of patients undergoing hematopoietic cell transplantation have multifaceted caregiving responsibilities (such as medical, household, financial) of long duration, they also have multiple physical, social, psychological, and informational needs. Objective: This study explored the prevalence of electronic health record patient portal use by family caregivers for managing both their own and their hematopoietic cell transplantation care recipient’s health, as well as potential factors associated with portal use. Methods: An electronic caregiver health survey, first developed via cognitive interviewing methods of hematopoietic cell transplantation caregivers, was distributed nationally (in the United States) by patient advocacy organizations to family caregivers of hematopoietic cell transplantation patients. It was used to assess self-reported caregiver demographics, caregiving characteristics, depression and anxiety with the Patient Health Questionnaire–4, coping with the Brief COPE, and caregiver portal use to manage care recipient’s and their own health. Results: We found that 77% of respondents (720/937) accessed electronic health record patient portals for their care recipients, themselves, or both. Multivariate models indicated use of care recipient electronic health record portals by caregivers was more likely with young, White, married, low-income caregivers caring for a parent, residing with the care recipient, and experiencing more caregiver depression. Caregiver use of their own electronic health record portal was more likely with young, White, high-income caregivers caring for a parent and experiencing chronic medical conditions of their own. Partially due to multicollinearity, anxiety and coping did not contribute independently to this model. Conclusions: Findings from the survey could open avenues for future research into caregiver use of technology for informational support or intervention, including wearables and mobile health. International Registered Report Identifier (IRRID): RR2-10.2196/4918
Background: Care of elderly family members affects the welfare of the elderly and caregivers and has macroeconomic implications. In Eastern Europe, aging populations combined with under-developed care policy increase family care burdens, but the impact of care on labour force participation is understudied in this context. Methods: Using two waves of the Generations and Gender survey, we estimate the impact of care demand on paid employment in Bulgaria. Results: We find that living with an elderly or disabled parent has a negative impact on employment for women and that this impact cannot be explained by reverse causality or unobserved individual characteristics. Conclusions: More developed care policy would benefit caregivers and would be likely to generate broader fiscal benefits.
Background: Married female caregivers face a higher risk of an informal care burden than other caregivers. No study has explored the effect of socioeconomic status (SES) on the intensity of informal care provided by married female caregivers in China. The purpose of this study is to empirically examine how the SES of married female caregivers affects the intensity of the informal care they provide for their parents/parents-in-law in China. Methods: The data for this study were drawn from 8 waves of the China Health and Nutrition Survey (CHNS). The respondents were married women whose parents/parents-in-law needed care and lived in the same city as them. SES was defined based on four indicators: education, economic status, employment status, and hukou (China’s household registration system). Informal caregivers were divided into three categories: non-caregivers (0 h/week), low-intensity caregivers (less than 10 h/week), and high-intensity caregivers (10 h/week and above). Multinomial logistic regression analysis was used to examine the relation between SES and the likelihood of a low- and high-intensity caregiving among married female caregivers, adjusting for age, family characteristics and survey wave. Results: Of the 2661 respondents, high-intensity and low-intensity caregivers accounted for 16.35 and 21.27%, respectively. The multinomial logistic regression results showed that the likelihood of being a high-intensity caregiver versus (vs. a non-caregiver) increased as the caregiver’s educational attainment increased (p < 0.05), and that high economic status was related to the likelihood of being a high-intensity caregiver, but this relationship was only significant at the 10% level. Urban females were 1.34 times more likely than their rural counterparts to provide low-intensity care vs. no care (p < 0.05) and were 1.33 times more likely to provide high-intensity care vs. no care (p < 0.05). Employed females were 1.25 times more likely than those unemployed females to provide low-intensity care vs. no care (p < 0.05). Conclusions: Differences in SES were found between high-intensity caregivers and low-intensity caregivers. Women with high educational attainment and urban hukou were more likely to provide high-intensity informal care, and women who were employed and had urban hukou were more likely to provide low-intensity care.
Introduction: Compared to other types of caregiver, spouse-caregivers tend to be closer to people with Alzheimer’s disease (PwAD) because of their different position in the relationship. We designed this study to compare the differences in caregivers’ quality of life (QoL) and domains of QoL according to the kinship relationship between the members of caregiving dyads. Methods: We assessed QoL of 98 PwAD and their family caregivers (spouse-caregivers, n = 49; adult children, n = 43; and others, n = 6). The PwAD and their caregivers completed questionnaires about their QoL, awareness of disease, cognition, severity of dementia, depression, and burden of caring. Results: The comparison between caregiver types showed that spouse-caregivers were older, with higher levels of burden and lower scores for cognition. Caregivers’ total QoL scores were not significantly different according to type of kinship. However, there were significant differences in the domains physical health (p = 0.04, Cohen’s d [d] = -0.42), marriage (p = 0.01, d = 1.31), and friends (p = 0.04, d = -0.41), and life as a whole showed a trend to difference (p = 0.08, d = -0.33). When QoL domains were analyzed within dyads, there were significant differences between members of spouse dyads in the domains energy (p = 0.01, d = -0.49), ability to do things for fun (p = 0.01, d = -0.48), and memory (p = 0.000, d = -1.07). For non-spouse dyads, there were significant differences between caregivers and PwAD for the QoL domains memory (p = 0.004, d = -0.63), marriage (p = 0.001, d = -0.72), friends (p = 0.001, d = -0.65), and ability to do chores (p = 0.000, d = -0.76). Conclusions: Differences were only detected between spouse/non-spouse-caregivers when QoL was analyzed by domains. We speculate that spouse and non-spouse caregivers have distinct assessments and perceptions of what is important to their QoL.
Background: Informal caregivers often report exhaustion when providing care, which can be related to forms of burnout. Yet, there is no systematic inventory of studies comparing caregivers and non-caregivers in terms of burnout. Methods: For the present meta-analysis, studies comparing burnout in informal caregivers and non-caregivers were screened and included. Findings: Two categories of studies were found: those on family care burnout (spousal or parental burnout) and those on professional burnout (mostly in healthcare). For family care burnout studies, informal caregivers reported more emotional exhaustion, and, to a lesser extent, depersonalization and reduced personal accomplishment than non-caregivers. For studies on professional burnout, workers providing informal care also reported more emotional exhaustion than workers not providing such a care. Conclusion: Overall, the results indicate that providing informal care represents a risk for role burnout. In family care burnout studies, these results confirm the assumption that providing informal care adds extra weight on the individuals’ shoulders. In professional burnout, these results support the role accumulation theory, pointing that an additional weight in one’s role, i.e., providing informal care, has an impact on another role, work. This work emphasizes the consideration of the multifaceted impact that the caregiving role can have on the individual.
Background: Researchers are continuing to focus on the nature and sources of burden of family caregivers of persons living with dementia. Caregiving stress and burden are assessed and addressed by social workers, including at high-risk times such as hospitalization. Methods: This study tested whether adult-child family caregivers experience greater perceived burden than spousal caregivers, accounting for risks of acute stress which can accompany hospitalization for their care recipient, where social workers may be meeting with family caregivers for the first time. Family caregivers (N = 76; n = 42 adult-child; n = 34 spouse) were recruited during care-recipient clinical treatment. The settings of care included an outpatient memory care program and an inpatient geriatric psychiatry service. Results: Results showed that adult-child caregivers reported greater burden as compared with spousal caregivers, but no differences regarding depressive symptoms, perceived stress, or grief. After controlling for demographics and location of care, being an adult-child caregiver remained a predictor of greater burden severity. Being an adult-child family caregiver may place an individual at increased risk for experiencing high burden. Conclusions: These findings suggest socials workers should consider how adult-child caregivers may benefit from strategies to address and reduce burden, beyond those typically offered to spousal caregivers.
Aims and Objectives: This study examined the predictors of caregiver burden based on patient and caregiver characteristics in a sample of Spanish caregivers looking after adult patients with chronic disease. The effect of task type and patient–caregiver interaction is also analysed. Background: Specific predictors of caregiver burden have been widely examined in the literature. Few studies, however, jointly analyse a wide range of factors, including the effect of task type and patient–caregiver interaction. Design: Correlational study.MethodsOne hundred and thirty five informal caregivers for 148 care recipients were recruited from primary health care centres. The caregivers responded to the short version of the Zarit Burden Interview (ZBI), the DEPendency index‐6 Dimensions (DEP‐6D), and reported how long they spent on caregiving on a daily basis. Sociodemographic and health characteristics were also recorded. Linear and logistic regression models were used to evaluate factors associated with ZBI scores and the likelihood of being severely burdened, respectively. This research complies with STROBE guidelines for observational studies. Results: Severe burden was present in 62% of the caregivers. Regression analysis shows that burden severity increases significantly with the level of dependence when the latter is measured either by DEP‐6D or by time spent on basic activities. Care related to incontinence and mobility has the greatest effect on burden, which is aggravated when the patient has behavioural problems. Poor caregiver health or not being retired also contributes to burden levels. Conclusions: These results establish that caregiver burden is related to characteristics of both the caregiver and the care recipient as well as to their interaction.Relevance to clinical practiceThe findings indicate that the socio‐sanitary attention focused on reducing caregiver burden must address the caregiver and patient as a dyad. Identifying the dependence level and the patient's aggressive behaviour can be a good predictor of caregiver burden.
Background: Siblings often share in the care of parents with dementia, but little is known about how care is shared. Research suggests that in comparison with their brothers, sisters provide the majority of care to a parent with dementia and this can contribute to the sisters experiencing poorer health outcomes. There is limited knowledge about how to guide siblings who share in the care of a parent with dementia. Aim: Our qualitative descriptive study sought to explore the experiences of adult daughters sharing care responsibilities with their siblings. The study protocol was approved by institutional (University of Toronto and Baycrest Health Sciences) research ethics boards. Materials & methods: Thirty‐four daughters participated in an online qualitative survey. Data were analysed using Braun and Clarke's (Qualitative Research in Psychology, 3, 2006, 77) 6‐step process. Results: In an overarching theme, daughters expected shared caregiving with their siblings. They conceptualised this to be a practice of being equitable in dividing care responsibilities and fulfilling a supportive role for a parent with dementia; however, this expectation was not met by most daughters. Two subthemes were identified: (a) factors facilitating/constraining shared caregiving and (b) consequences of sharing care. The findings highlight the importance of understanding shared caregiving among siblings when caring for a parent with dementia. Discussion: Results from this study suggest that although shared caregiving is often the goal, factors such as gender roles, geographical proximity, caregiver expertise/skill set and work schedules affect caregivers' abilities to share caregiving. These factors affected whether daughters viewed the caregiving situation as being shared equitably or inequitably, and this led to feelings of acceptance or resentment of their sibling's contribution to the care of their parent. Conclusions: Healthcare providers can utilise these findings to better support adult–child caregivers negotiating care with their siblings.
Background: Informal (unpaid) carers are an integral part of all societies and the health and social care systems in the UK depend on them. Despite the valuable contributions and key worker status of informal carers, their lived experiences, wellbeing, and needs have been neglected during the COVID-19 pandemic. Methods: In this Health Policy, we bring together a broad range of clinicians, researchers, and people with lived experience as informal carers to share their thoughts on the impact of the COVID-19 pandemic on UK carers, many of whom have felt abandoned as services closed. Discussion: We focus on the carers of children and young people and adults and older adults with mental health diagnoses, and carers of people with intellectual disability or neurodevelopmental conditions across different care settings over the lifespan. Conclusion: We provide policy recommendations with the aim of improving outcomes for all carers.
Background: The number of individuals experiencing Alzheimer's disease is increasing as the population ages. The majority of individuals experiencing Alzheimer's disease receive care from a family member, most often a spouse or adult child. Adult child caregivers have unique needs and life situations that put them at increased risk for caregiver burden and burnout. While both individual therapy and family therapy have been used with family caregivers, little scholarship has explored the role of couples therapy in improving caregiver outcomes. Methods: This article explores contributing factors to adult child caregiver burden and applies contextual therapy to treat these problems in couples therapy. We use a clinical vignette to illustrate the application of fairness, balance, loyalty conflicts, and constructive/destructive entitlement to caregiving. Conclusions: In all, we identify common dynamics in couples wherein one or both partners are primary caregivers for parents with Alzheimer's disease and provide clinical suggestions on how to assess and treat these challenges in couples therapy.
Background: While research has shown that hospice family caregivers (HFCG) seek additional information related to patient care, pain and symptom management, and self-care, it is unknown how the use of telenovela videos for education in hospice would be received by HFCG. Objective: To explore HFCG perceived benefits and challenges with the use of telenovelas as compared to traditional educational videos during online support group. Methods: A mixed methods study with a concurrent triangulated design that analyzed qualitative interviews and YouTube analytics report to identify how viewers responded (number of views and their feedback) to telenovela videos as compared to traditional educational videos. Results: Among 39 (n = 39) HFCGs, most participants were female (80%) of White/Caucasian race, with more than high school education (85%) and they were adult children of hospice cancer patient (49%). Comparing HFCG that viewed traditional videos with HFCG that viewed telenovela videos, the telenovela video was watched more (12% longer viewing duration) and caregivers reported better content recall with informative benefits, more follow up actions and reflection about their own hospice experience. Conclusion: Caregiver feedback indicated that watching the telenovela was engaging, acceptable and produced more conversations about patient care, than watching a non-telenovela format video. Further research is needed to test telenovela efficacy in enhancing HFCG outcomes.
Purpose: To compare the anxiety, depression and explore their relationship to quality of life (QoL) among adult acute leukemia (AL) patients and family caregivers (FCs) in China. Methods: A multicenter cross-sectional study was conducted from April 2017 to January 2018. The sample comprised 207 dyads of adult AL patients and FCs. The participants were required to complete socio-demographic information and the Hospital Anxiety and Depression Scale (HADS). The Functional Assessment of Cancer Therapy-Leukemia (FACT-Leu, only for patients) and MOS 36-item Short-Form Health Survey (SF-36, only for FCs) were used to measure QoL. Results: The mean scores of anxiety and depression for AL patients were 7.89 ± 3.85 and 7.18 ± 4.23, respectively. For FCs, the mean scores of anxiety and depression were 9.96 ± 3.73 and 8.64 ± 3.74. In this study, adult AL Patients' sex, patients' depression score, whether patients achieving a CR or not, education, FCs' depression score, patients' social/family well-being and emotional well-being were significantly associated with patients' anxiety or depression (p < 0.05). For FCs, depression was significantly related to the physical component summary (β = 0.127, p = 0.008). There were significant differences in anxiety (t = − 5.92, p < 0.001) and depression (t = − 4.19, p < 0.001) between patients and FCs. Conclusions: AL patients' FCs showed higher score of anxiety and depression than that of patients. The psychological health may have a potential relationship between AL patients and their FCs. Healthcare professionals can conduct family-center interventions to improve mental health and QoL of AL patients and FCs.
Background: More and more adults in their fifties and sixties are confronted with the need to support their ageing parents. Although many aspects of filial caregiving have been researched, a well-documented and comprehensive overview of the caregiving experience is lacking. Aim: This study aims for a better understanding of the caregiving experience of adult children by generating an overview of main themes in international research. Method: A literature review of qualitative studies, focusing on the experiences of adult children caring for their ageing parents, was performed. The electronic EBSCO databases Academic Search Premier, CINAHL and PsycINFO, and Google Scholar were searched to identify relevant qualitative studies published between 2000 and 2017. The 'SPIDER' eligibility criteria directed the approach. The quality of studies included was screened with the assessment sheet designed by Hawker and colleagues. The experiences reported were analysed and themes were synthesized. Ethical consideration: Ethical requirements were respected in every phase of the research process. Findings: Nineteen qualitative studies met the inclusion criteria. The quality of the relationship with the parent appears to be an important determinant of the children's caregiving experience. Within this context, three themes were found: caregiving as an emotional rollercoaster, a normatively demanding experience and an opportunity for personal development. Discussion: Children caring for their ageing parents have to deal with a wide range of contradicting and conflicting norms and values. Implications for healthcare professionals and future research have been discussed. Conclusion: Caring for ageing parents is a continuous quest for giving the best possible care and living up to one's personal values, within the context of the parent's declining health. Professionals who support filial caregivers should address not only practical responsibilities but also the normative questions and moral considerations caregivers are dealing with.
Objective: The objective of this study was to determine and characterize caregiver burden among caregivers of community-dwelling older persons in Jamaica. Method: A nationally representative cross-sectional study was done among persons providing noninstitutional care for a single person (≥60 years). The Zarit Burden Interview (ZBI) and a structured questionnaire were administered to 180 caregivers from four geographic health regions. Results: The ZBI scores ranged from 0 to 56 (median = 15). Independently associated factors were relationship to care recipient and age. Children/grandchildren had higher caregiver burden scores than formally employed caregivers (odds ratio = 2.9: 95% confidence interval: [1.02, 8.34]). Compared with caregivers 35 to 44 years, those aged 45 to 65 were almost 5 times more likely to report higher caregiver burden scores. Conclusion: Caregiver burden as identified by the ZBI was low. Age (45–65 years) and being the child/grandchild of the care recipient were independently associated with greater caregiver burden. Interventions to address caregiver burden must embrace strategies that recognize that these factors.
Purpose: Family caregivers comprise the backbone of long-term-care provision in the United States, yet little is known about how the composition and experience of family caregiving has changed over time. Design and Methods: Data are drawn from the 1989 and 1999 National Long-Term Care Survey and Informal Caregiver Survey to develop nationally representative profiles of disabled older adults and their primary informal caregivers at two points in time. Results: The proportion of chronically disabled community-dwelling older adults who were receiving informal assistance from family or friends declined over the period of interest, whereas the proportion receiving no human help increased. On average, recipients of informal care were older and more disabled in 1999 than in 1989. Primary caregivers were children (41.3%), spouses (38.4%), and other family or friends (20.4%); children were more likely and others less likely to serve as primary caregivers in 1999 relative to 1989. Primary caregivers provided frequent and high levels of help at both points in time. A striking increase was found (from 34.9% to 52.8%) in the proportion of primary caregivers working alone, without secondary caregiver involvement. Implications: In the context of projected demographic trends and budgetary constraints to public health insurance programs, these data underscore the importance of identifying viable strategies to monitor and support family caregivers in the coming years.
Objectives: Although siblings represent central members of the networks of caregivers and their parents, there has been limited attention to how siblings affect one another's well-being during caregiving. In this article, we draw from theories of identity and stress to examine the impact that siblings have on caregivers' psychological well-being. Specifically, we employ a mixed-methods approach to explore whether caregivers' perceptions that their siblings are critical of the care they provide their mother are associated with higher depressive symptoms and the mechanisms underlying this association. Methods: Using quantitative data collected from 404 caregivers nested within 231 families as part of the Within-Family Differences Study, we conduct mediation analyses to examine whether perceived sibling criticisms are associated with caregivers' depressive symptoms (a) directly and/or (b) indirectly through sibling tension. We then analyze qualitative data collected from the same caregivers to gain insight into the processes underlying statistical associations. Results: Quantitative analyses revealed that there was no direct relationship between perceived sibling criticisms and depressive symptoms; there was, however, an indirect relationship such that perceived sibling criticisms were associated with greater sibling tension, which in turn was associated with higher depressive symptoms. These quantitative findings were corroborated by qualitative analyses, which demonstrated that, in an effort to mitigate the negative impact of sibling criticisms, caregivers often employed strategies that may have fueled sibling tension. Discussion: These findings demonstrate how identity processes, as well as the family networks in which caregiving takes place, shape the experiences and consequences of parent care.
Background: Caregivers are responsible for the care of another, such as a young adult, disabled child, elderly parent, or sick spouse. Individuals who have caregiving responsibilities must blend the often-contradictory behavioural expectations from the different roles in which they reside. Methods: Building on the theoretical foundations of Conservation of Resources theory, this study tests a mediational model explicating the process through which caregiver burden impacts mental health through work-family conflict among a community sample of 1,007 unpaid caregivers in the greater Chicago area who responded to a mail survey at three time points. Results: Structural equation modelling analyses indicate strain-based conflict as being a consistent mediator between caregiver burden and mental health at baseline and two years later. These findings can inform practice and policy for workers with caregiving responsibilities.
The author uses poetic inquiry as CFIC (critical family and interpersonal communication) methodology to tell a story of cooking, cleaning, and caring for her elderly parents in the house she grew up in during the COVID-19 pandemic for 11 days in March 2020 when COVID-19 lockdowns began in the US. The piece is organized as a series of daily menus, lyric reflections, and narrative poems about family stories, family values, and the enactment of supportive behaviors that detail how a family deals with political differences, identity negotiation, and crisis. The author asks: (1) What does it mean to be a good daughter, and how is this complicated by discourses about the meaning of marriage?; (2) How does one reconcile family differences in political views and hold true to family and personal values?; and (3) How does one decide what obligations to focus on during a moment of personal and international crisis? The use of poetic inquiry shows how public cultural discourses influence private experience.
Purpose: To explore the barriers to family resilience in caregivers of people who have schizophrenia. Design: A qualitative descriptive approach was used. Methods: Semistructured interviews were conducted with family caregivers of patients with schizophrenia registered at the psychiatry outpatient unit of a hospital center. Content analysis was performed on audio‐recorded and verbatim‐transcribed interviews. The consolidated criteria for reporting qualitative research (COREQ) checklist was applied to this study. Results: A total of 31 family caregivers participated, the majority of whom were female (71%) with an average age of 57.5 years. Most participants lived with and cared for their relative (90.3%). The caregiver role was assumed mostly by mothers (54.8%) and fathers (22.6%). Barriers to family resilience in caregivers of people experiencing schizophrenia broadly fall under five categories: lack of knowledge about the disease, social stigma, expressed emotion, involvement in the relationship, and blame. Conclusions: In view of the paucity of studies exploring and understanding the barriers to family resilience, this study presents itself as one of the first in this area. There are different barriers to family resilience. This research provides an overview and an understanding of key barriers to family resilience in caregivers of people experiencing schizophrenia. Clinical Relevance: There is a need for nurses to help families to be resilient. By understanding the barriers to resilience, nurses are able to focus on these factors and help families to remove or reduce their influence.
Background: Illness blogs have been used by many individuals to describe their experiences, share knowledge, and gather support. The purpose of this study was to identify needs, concerns, and advice from the blogs of caregivers caring for a person with dementia at the end of life (EOL). Design: A qualitative thematic analysis was performed of 192 blog postings from six dementia family caregivers during the EOL. A Google search using a systematic identification method was followed. Caregivers were females caring for mothers (n = 5) and husbands (n = 1). Results: Themes varied by EOL stage within the contextual environment of Grief/Loss, Family, and Spirituality. Pre-death themes were Care Transitions and Quality; dying were Physical and Emotional Aspects; and post-death were Relief and Remembering. Four additional themes transitioned across stages: Decision-Making, Health Care Providers, Advice, and Caregiver Support. Conclusions: Findings suggest caregiver needs, concerns, and advice vary by EOL stage. Implications for tailored interventions should be considered.
Background: Although caregivers of patients with eating disorders usually experience a heavy caregiving burden, the effects of social support on caregivers of patients with eating disorders are unknown. This study aimed to investigate how social support for mothers who are caregivers of patients with an eating disorder improves the mothers’ mental status and, consequently, the symptoms and status of the patients. Methods: Fifty-seven pairs of participants were recruited from four family self-help groups and one university hospital in Japan. Recruitment was conducted from July 2017 to August 2018. Mothers were evaluated for social support using the Japanese version of the Social Provisions Scale-10 item (SPS-10), self-efficacy using the General Self-Efficacy Scale, loneliness using the University of California, Los Angeles Loneliness Scale, listening attitude using the Active Listening Attitude Scale, family functioning using the Family Assessment Device, depression symptoms using the Beck Depression Inventory (Second Edition), and psychological distress using the Kessler Psychological Distress Scale. Patients were evaluated for self-esteem using the Rosenberg Self-Esteem Scale, assertion using the Youth Assertion Scale, and their symptoms using the Eating Disorder Inventory. We divided the mothers and patients into two groups based on the mean score of the SPS-10 of mothers and compared the status of mothers and patients between the high- and low-scoring groups. Results: High social support for mothers of patients with eating disorders was significantly associated with lower scores for loneliness and depression of these mothers. We found no significant differences in any patient scores based on mothers’ level of social support. Conclusions: For patients with eating disorders, social support for a caregiver cannot be expected to improve their symptoms, but it may help prevent caregiver depression and loneliness.
Background: Long-term care, also known as aging services, is evolving to meet the needs of the aging population in the United States, which is increasingly ethnically and racially diverse. The objective of this qualitative multiple case study was to understand how immediate family members experienced the transition of older African American women as they moved into assisted living facilities. Design: Black feminist theory provided a theoretical framework. Narrative interview data were collected from four adult children family caregivers who facilitated the move. Results: Three themes emerged from the content analysis: (a) Transition is not planned in advance and does not happen until a critical event or incident occurs that changes the older adult’s physical, social, or emotional status; (b) The transition was more difficult than had been thought for the older women and their families; and (c) Older adults expect that family members stay connected and involved after the transition, and family members may have similar expectations. Human services professionals may use the results to provide better-informed programs and services for older African American women and their family member caregivers. Conclusion: Social change implications suggest developing a transition model to improve assessment and evaluation processes, promote cultural competence initiatives, and promote a person-centered approach to the transition process in order to begin to identify a framework that might be useful for human services practitioners.
Background: This study examines adult children’s propensity to provide personal care to older mothers and fathers. The theory of intergenerational solidarity facilitates the understanding of commitment and support between adult children and parents. Solidarity may depend on childhood events as well as the current situation, and we therefore focus on whether there was a parental breakup in childhood and the parent’s current living arrangements. We also focus on the gendered aspects of the relations as earlier research has found stronger matrilinear relationships. Method: The propensity for personal care was analyzed with regression analysis using the 2012 Swedish Generations and Gender Survey. Results: The results show that daughters are more likely than sons to provide personal care to both parents. Parental breakup in childhood does not change the propensity of personal care to any parent. The probability of receiving care is higher for lone mothers than for mothers living with the father, but not for repartnered mothers. Adult children’s care provision does not differ for lone fathers and fathers living with the mother, but children are more likely to provide care to lone fathers than to repartnered fathers. We interpret this to indicate that repartnering weakens ties to fathers but not mothers. The results indicate that the child’s gender and the parent’s living arrangements operate differently with regard to care for mothers and fathers. The most common pattern is care provided from daughters to mothers. For example, daughters of lone mothers are more likely to provide care than sons in the same situation. Conclusion: We conclude that intergenerational solidarity is not affected by parental breakup in childhood but that present living arrangements affect such solidarity in gendered ways.
Purpose Research on the impact of family cancer caregiving is primarily dyadic in focus. How caregiving affects the larger family system is less understood, yet knowing this is vital to developing supportive resources for caregivers, patients, and their families. To better understand how blood cancer caregiving impacts the family system, we explored the experiences of adult child caregivers of diagnosed parents and parent caregivers of diagnosed children. Methods We conducted semi-structured interviews with 39 midlife parent and adult child caregivers of patients with leukemia or lymphoma. Using a family systems theory lens, we conducted a thematic analysis using the constant comparative method to identify how caregiving impacts the larger family system. Results Caregivers ranged from age 30 to 64 (M= 43). They described four ways that caregiving impacted themselves and the larger family system: (1)disruption of home life, (2)emotional (dis)connection, (3)juggling competing roles, and (4)developing resiliency and intimacy. Perspectives within each category differed based on their relational role to the patient or in the broader family. Conclusions Themes identify ways to provide support to both caregiver types. Support care resources could help families navigate gains and losses impacting the family system after a blood cancer diagnosis. Both caregiver types described experiencing (and/or their family experiencing) a loss in relational connection, feeling alone, and members distancing themselves. Both caregiver types also described gains in family functioning, like strengthened bonds and togetherness. Findings validate the need for family-centered support with key areas to address for healthy family functioning.
Introduction Care of persons living with chronic conditions rests heavily on women within the context of the family. Research demonstrates that women experience more caregiving strain compared to men, yet less is known about the differences in experiences between women carers: namely, wives and daughters. Objective The purpose of this study was to examine and compare the experiences of wife and daughter carers of older adults living with Alzheimer disease and related dementias, plus at least two other chronic conditions. Methods Using qualitative description with Wuest's feminist caring theory of precarious ordering as an analytic framework, interview transcripts of women carer participants who were from the control group of a larger multi-site mixed methods study evaluating the web-based intervention My Tools 4 Care were analyzed. Findings Both wives and daughters experienced daily struggles, altered prospects, and ambivalent feelings around their caring role. Negotiating the role of professional carer was an important part of balancing caring demands and anticipating the future, and women took an active role in trying to harness caring resources. Findings indicated wives and daughters were generally similar in how they described their caregiving, although daughters reported more shared caring and decision-making, and needed to balance paid employment with caregiving. Conclusion Wives and daughters face similar challenges caring for persons with a dementia and multiple chronic conditions, and actively engage in strategies to manage caring demands. The findings illuminate the importance of accessible, appropriate support from professional carers/health care providers, and suggest that assistance navigating such supports would benefit women carers.
We investigate whether work and partnership life courses between ages 16 and 54 predict the likelihood of providing care to a parent or parent-in-law at age 55, and whether these associations differ by gender or early life socio-economic circumstances. In the National Child Development Study (NCDS), fully adjusted models showed that strong life course ties to marriage were linked with a greater likelihood to provide parental care for both men and women. The longer women spent in part-time employment the more likely they were to provide care to a parent, while stronger life course ties to full-time employment were linked with a greater likelihood of providing care to a parent for men. The importance of part-time employment among women and long-term marriage for both men and women for uptake of parental care may imply a reduced pool of potential informal caregivers among subsequent generations for whom women have much stronger life course labour-market ties and life course partnerships have become more diverse.
Objectives Many older adults rely on their children's support to sustain community residence. Although filial norms encourage adult children to help their parents, not every child provides parent care in times of need. The majority of prior studies have adopted an individualistic perspective to examine factors associated with individual children's caregiving behavior. This study complements previous work by using the family systems perspective to understand how caregiving responsibilities are allocated among children in the family and how the pattern of care division evolves over time. Method Data came from seven rounds of the National Health and Aging Trends Study (2011–2017), in which community-dwelling respondents were asked about all of their children and which children provided them with care. Multilevel models were estimated to examine how caregiving responsibilities were distributed among children and how the children's caregiving efforts responded to changes in their parents' frailty. Results About three quarters of older adults reported receiving help from only one child, and the average of monthly care hours was about 50 at baseline. As parents' frailty increased, the proportion of children providing parents rose and the allocation of parent-care hours became more equal. Discussion This study underscores the importance of using the family systems perspective to better understand adult children's caregiving behavior. Although just one adult child providing care is the most common caregiving arrangement initially, adult children tend to work with their siblings to support parents' aging in place as parents' need for care increases.
Background and Objectives Despite the surveilling nature of technologies that allow caregivers to remotely monitor location, movements, or activities, the potential differences in comfort with remote monitoring between caregivers and care recipients have not been examined in depth. On the dyad and aggregate level, we compare preferences of older adult women and their adult children for three remote monitoring technologies. Their assessments of each technology's impact on privacy, safety, independence, freedom, relationship with family member, social life, and identity are also compared. Research Design and Methods This dyadic study used cognitive-based interview probing and value-centered design methods. Twenty-eight individual, in-depth, structured interviews were conducted with 18 women who are Meals on Wheels clients and 10 of their adult children. Results Meals on Wheels participants reported multiple chronic conditions and an average of 1.7 ADL and 3.3 IADL difficulties; two thirds were enrolled in Medicaid. Adult children preferred each technology more than their mothers did and underestimated both their mothers' ability to comprehend the functions of the technologies and the importance of engaging them fully in decision making. Most were confident that they could persuade their mothers to adopt. For both groups, privacy was the most-cited concern, and participants perceived significant overlap between values of privacy, independence, identity, and freedom. Discussion and Implications Studying privacy in isolation overlooks privacy's instrumental role in enabling other values. Shared decision-making tools are needed to promote remote monitoring use consistent with older adults' values and to prevent conflict and caregiver overreach.
Placement behaviours of families of adults with intellectual disabilities has received little or no attention of researches to date. A prospective design was adopted to examine changes in placement decisions of 75 family carers over a 12-month period. Factors associated with changes were also examined. Over 12 months, 30 families moved closer to considering an out of home placement. Of these 14 had placed their relative in out of home care. Proactive coping strategies were significantly associated with an increased likelihood of continued home care. While the results were similar to studies with children with intellectual disability (ID) or autism spectrum disorder (ASD), a move out-of-home occurred more quickly for adults. This may reflect current social policy and societal attitudes where moving out of home is more normative for adults with ID. The lack of association with all but one carer or care recipient factors suggest that changes in placement tendencies for adults may differ from that of children.
This pilot study evaluated a video-based educational program for improving communication skills and reducing family violence between parents and their adult children with schizophrenia. We used a one group pretest-posttest design. The program included a main 90-min video and six stories, each 20–30 min long. We made assessments at baseline and program completion (three months after baseline). Sixty-six parent participants completed the intervention. The average frequency of acts of family violence significantly decreased from 11.4 (SD = 26.2) at pretest to 5.1 (SD = 13.2) at posttest (p = 0.016). Our findings showed significant improvements regarding expressed emotion, psychological distress, family empowerment, and hope, demonstrating preliminary positive results for this video-based educational program. The program was shown to be feasible for support/educational groups of family members of adults with mental disorders to deliver and may also be useful for practitioner-led educational groups for families in public health centers or medical settings to offer.
Introduction Whereas it is widely recognized that emerging adulthood can be a difficult time in the life of an individual living with type 1 diabetes, relatively little is known about the experiences of their parents or guardians. These individuals once shouldered much of the burden for their child's diabetes 'self'-management, yet their contribution is often overlooked by the adult healthcare system. Here, we set out to gain an understanding of the perspectives of parents of emerging adults living with type 1 diabetes. Research design and methods Semi-structured interviews were performed with a purposeful sample of parents of emerging adults with type 1 diabetes recruited from two urban young adult diabetes clinics and through a national diabetes charity. Thematic coding was derived using a constant comparative approach. Results Analysis of interviews with 16 parents of emerging adults with type 1 diabetes identified three themes: parental experiences of the transition to adult care; negotiating parent-child roles, responsibilities and relationships; and new and evolving fears. Parents spoke in detail about the time surrounding their child's diagnosis of type 1 diabetes to emphasize the complexity of diabetes care and the need to establish a 'new normal' for the family. In turn, adolescence and emerging adulthood required a renegotiation of roles and responsibilities, with many parents continuing to play a role in high-level diabetes management. Several parents of emerging adults with type 1 diabetes (particularly those of young men) vocalized worries about their child's readiness to assume responsibility for their self-care, and some expressed frustration with the apparent dichotomy in the role expectations of parents between the pediatric and adult care settings. Conclusions Adult healthcare providers should recognize both the ongoing involvement of parents in the 'self'-management of emerging adults with type 1 diabetes and the unique aspects of the caregiver burden that they experience.
This study explored perceptions of filial care among second-generation Chinese immigrants in the Netherlands. The provision of filial help or care can be regarded as a cultural phenomenon known as filial piety and it can be considered within the broad scope of caregiving as "family care". Fifteen interviews were conducted, and a thematic analysis was applied. The findings showed that care was given in the form of language brokering, information inquiry, home visits, and facilitative and social support. Care was perceived as a moral duty among the participants and was grounded in their perceived sense of responsibility. The participants' perspectives on current and future care included practical and normative considerations for meeting parental needs, and included opinions based on filial piety norms. In conclusion, this study showed that filial piety, specifically filial care, is still relevant to the younger immigrant Chinese community in the Netherlands.
The aim of this study was to examine carer experiences with mental health services for individuals with dual disabilities in Australia. This qualitative study involved semi-structured interviews with nine parents with an adult offspring with an intellectual disability in 2016. Parents who had received a mental health service for their offspring within the past two years in Australia with adequate spoken English were included. Parents were asked four open ended questions relating to their experiences of mental health services for their offspring. Findings revealed parents reported more negative experiences with mental health services perceived to hold limited expertise in dual disabilities. They also reported difficulties in accessing appropriate services and highlighted the importance of collaboration and adjustments to suit individual needs of their child. The findings are discussed in terms of the implications for service provision and training for practitioners working with families with intellectual disabilities. Acknowledging the important role of carers as key informants and partners in treatment decision making is highlighted as necessary aligning services with best practice standards.
• Anxious-avoidant attachment pairings predict increased burden in adult-child carers. • Similar attachment insecurity in parent-child dyads do not predict burden. • Taking a dyadic approach to examining attachment in ageing families is critical.
This study takes an interpersonal approach to the study of carer burden in families where adult children care for older parents. The aim of the study was to determine whether different pairings of attachment insecurity in older parent-adult child dyads are predictive of carer burden. Seventy dyads whereby adult children provided weekly care to their older parents completed self-report measures of attachment. Adult children also completed a measure of carer burden. Anxious-avoidant attachment insecurity pairings in parent-child dyads were associated with increases in carer burden. However, anxious-anxious and avoidant-avoidant attachment insecurity pairings were not associated with burden. The attachment insecurity of the care-recipient was found to moderate the association between a carer's attachment insecurity and burden, but only when the care-recipient's attachment insecurity differed to that of the carer's. These findings have implications for research, policy, and practice in aged care. The findings highlight the importance of focusing on attachment insecurity in aging families as well as taking a dyadic perspective when studying caregiving outcomes such as carer burden. The findings suggest that carers who may require the greatest support are those whose parents demonstrate contrasting orientations of attachment insecurity.
Due to linguistic and cultural adjustments to a new country, first-generation immigrant's caregiving challenges have been well-documented. However, little is known of U.S.-born, U.S.-educated, English-speaking later-generation caregivers' (2nd, 2.5, and 3rd-generation) attitudes and needs regarding caregiving. Given this context, we interviewed 40 later-generation Chinese-American caregivers in Seattle and Houston. Caregivers had a mean age of 59 years, were married, college-educated, and working females with children. The later the caregiver's generation, the higher their acculturation, but their sense of filial responsibility remained high across generations. While Seattle caregivers wish to live in a high-quality, long-term care facility, Houston caregivers prefer to live with their adult children for their future care. Findings emphasize the importance of understanding the caregivers' ethnically and generationally specific caregiving attitudes and preferences for geographically specific services. Collaborating with existing local organizations, it is critical to ensure that the provision of services meets local Chinese-American caregivers' needs and preferences.
The increase in life expectancy for adults with learning disabilities has extended the caring role for their parents. This study examined the experiences of older parents who provide long-term care for their adult children with learning disabilities and how they conceptualise their quality of life. Data were collected using semi-structured interviews with 27 older parent carers from four London boroughs and were analysed using framework technique. Findings indicate that most parents appraised their quality of life positively and reported benefits, despite the challenges they had to negotiate daily. The benefits from caregiving, more so in later life, were: a connected family from shared caregiving; a sense of belonging; purposeful living; a reciprocal relationship with their adult children; and personal transformations from providing care that improved their quality of life. The challenges that participants regularly encountered were: multiple losses (sleep, career, identity and friends); the added stress of the government's Personalisation Agenda of caring services; struggles for access to services; searching for a diagnosis; worry about future care and fear of abuse when carers are unable to continue in their role; unhelpful attitudes of health and social care professionals; and a lack of empathy from friends as well as the public towards people with learning disabilities. Caregiving and quality of life are inextricably linked and the difficulties that parents experienced were mainly associated with socio-structural barriers, rather than their children's disabilities. Importantly, the findings inform the practice of social workers and others who support this unique group of carers by providing new insights into how caring impacts on quality of life over time and how best these parents' needs can be met. This study makes a specific contribution to understanding the lived realities of older carers and extends current conceptualisations of caregiving and quality of life among older people.
Introduction: The measures implemented to manage the COVID‐19 pandemic have been shown to impair mental health. This problem is likely to be exacerbated for carers. Method: Informal carers (mainly parents) of children and adults with intellectual disabilities, and a comparison group of parents of children without disabilities, completed an online questionnaire. Almost all the data were collected while strict lockdown conditions were in place. Results: Relative to carers of children without intellectual disability, carers of both children and adults with intellectual disability had significantly greater levels of a wish fulfilment coping style, defeat/entrapment, anxiety, and depression. Differences were 2–3 times greater than reported in earlier pre‐pandemic studies. Positive correlations were found between objective stress scores and all mental health outcomes. Despite their greater mental health needs, carers of those with intellectual disability received less social support from a variety of sources. Conclusions: The greater mental health needs of carers in the context of lesser social support raises serious concerns. We consider the policy implications of these findings.
Aim The caregiving situation differs according to the type of relationship between the patient caregiver, and among dementia caregivers, living with the person with dementia can contribute to caregiver distress. This study aimed to identify the predictors of caregiver distress based on caregiver profile: spouse, adult child living with the person with dementia, and adult child not living with the person with dementia. Method In total, 213 caregivers participated in this study. Their responses to questionnaires helped identify the positive and negative implications of the caregiving situation and the level of caregiver distress. The analyses consisted of univariate and multiple linear regression models using a forward method. Results Based on the standardized beta scores, the variables that are the most significant in predicting spouse caregiver distress are the impact on health and impact on schedule. The variable that is the most significant in predicting the distress of adult child caregivers living with the person with dementia is the impact on health. The variables that are the most significant in predicting the distress of adult child caregivers not living with the person with dementia are the impact on health, impact on schedule, and impact on finances. Conclusion The results make it possible to consider different approaches to providing support, including evaluating the health of all caregivers, giving guidance on accepting help and focusing caregivers' actions on their values for spouse caregivers, providing family mediation for adult child caregivers living with the person with dementia, and offering information and assistance on the available aids for adult child caregivers not living with the person with dementia.
This study aims to assess the effectiveness of peer support groups for low-income older adults’ caregivers in the Hong Kong community. It compares the effectiveness of peer support groups on spouse and adult children caregivers. The peer support program was structured into three stages, including six training sessions for peer specialists, eight caregiver support group sessions, and non-structured informal contact. The study adopted a quasi-experiment design supplemented with qualitative data collected from focused group interviews. It involved a user group of 58 participants and a control group of 42 participants. Both quantitative and qualitative data were collected before, after the peer support groups, and at a three-month follow-up. The quantitative results showed that the peer support program was more effective in promoting social support for adult children caregivers but not for spousal caregivers. Three focus group interviews suggested that the community-based peer-support group could be helpful to improve stress management, emotional regulation skills, and social networks of the caregivers. Based on the research findings, we discuss the various needs of spousal and adult children caregivers, provide recommendations for service providers and practitioners to consider homogenous group services to address the diverse needs of spousal and adult children caregivers.
Background Conflicting evidence exists on whether parent or spouse caregivers experience better outcomes when caring for family members with schizophrenia. The current study aims to examine relative caregiving experiences and impacts of spouse and parent caregivers for people living with schizophrenia (PLS) in China. Methods A cross-sectional study was conducted in a sample of 264 community-dwelling primary family caregivers of PLS. Face-to-face interviews were conducted to collect information on family caregiving activities; negative caregiving impacts including objective and subjective burden, and caregiver psychological distress such as depression and anxiety; positive caregiving impacts including caregiving rewarding feelings, and family functioning for spouse and parent caregivers. Results Both types of caregivers report engaging in similar caregiving activities and report comparable levels of objective burden. However, parent caregivers report significantly higher subjective burden than spouse caregivers (b=7.94, 95%CI:2.08, 13.80, P<0.01), which is also reflected in significantly higher depression (b=3.88, 95%CI:1.35, 6.41, P<0.01) and anxiety (b=2.53, 95%CI: 0.22, 4.84, P<0.05), and lower family functioning (b=-1.71, 95%CI: -2.73, -0.49, P<0.01). Despite these differences, both groups of caregivers report comparable rewarding feelings about caregiving. Conclusions Our findings have implications for family caregivers globally, but especially for countries that adhere to Confucian cultural values and provide guidance for future family intervention programs. Such programs may do well to incorporate cultural values and beliefs in understanding caregiving and kinship family dynamics so as to support family caregivers, and in particular, the specific vulnerabilities of parent caregivers.
The purpose of this study was to gain a greater understanding of the experiences of African American daughters caring for parents with Alzheimer's disease or a related dementia (ADRD). In this secondary analysis of a subset (N = 12) of the sample from a previous study, daughters averaged 54 years of age and were caring for parents with moderate to severe ADRD. Results revealed two main categories: Caregiver Concerns and Caregiver Coping. Subcategories included challenging behaviors, social aspects, integration, and family culture and values. Findings offer insight into cultural factors relevant to practice along with research recommendations.
In this paper, we take a fresh look at the magnitude of the trade-off between caring informally for a parent and paid work. We adopt a simultaneous approach with a primary focus on how hours of care are influenced by hours of work rather than the other way round. We also investigate the role that filial obligations play in choices of caring versus working. Using the SHARE data (2004 and 2006) we find that the elasticity of informal care hours in response to working hours is between −0.17 in the caregivers sample and −0.19 in the women-only caregivers sample; small but not negligible. Moreover, we find that a 10% increase in the index measuring the strength of filial obligations increases weekly hours of care by about two and a half hours.
This study provided a description of types and dimensions of informal and formal social support among aging parental caregivers of adult children diagnosed with autism spectrum disorder (ASD). Parents participated in a web-based survey regarding use of and satisfaction with social support services for parents or their adult children. Results indicated that many parents participated in autism support groups (27.5%), with psychiatric services (48.8%), counseling (40.6%), and financial assistance (39.7%) the most commonly used formal social supports. Emotional support (88.8%) and informational support (67.5%) were the most common informal social supports used. Professionals who are working with parental caregivers and their adult children diagnosed with ASD should be aware of available social support services to help them find needed services.
Background: Given the importance of ethnic culture in family caregiving and recent Chinese immigrant population growth, this study explored effects of multiple filial piety traits-filial expectation, self-rated filial performance, and filial discrepancy-on psychological well-being of Chinese immigrants who care for older parents (adult-child caregivers) in the United States. Methods: This study used cross-sectional data from 393 Chinese immigrant adult-child caregivers in the Greater Chicago area from the 2012-2014 Piety study. Multivariate negative binomial and linear regression analyses tested effects of filial expectation, self-rated filial performance, overall filial discrepancy, and discrepancies in six filial domains (respect, bringing happiness, care, greeting, obedience, and financial support) on psychological well-being indicators: depressive symptoms and stress. Results: Adult-child caregivers reported high filial expectation and self-rated performance, and expectation was higher than performance. High filial expectation and self-rated performance were significantly associated with better psychological well-being; Overall filial discrepancy and two emotional-support domain discrepancies (respect, greeting) were associated with poor psychological well-being. Conclusions: Findings suggest that filial expectation, self-rated filial performance, and filial discrepancy are important in shaping Chinese adult-child caregivers' psychological well-being. Researchers and practitioners should incorporate these aspects of filial piety in future research and intervention development for this population.
This paper presents findings of a constructivist grounded theory study conducted within the Western Cape Province of South Africa. The study explored how family caregivers respond to sexuality issues of their young adults with intellectual disabilities (ID). Indepth interviews and focus group discussions were used as methods of data collection. Twenty-five family caregivers participated in the study. The family caregivers’ perceptions highlight how the lifelong care relationship and the living arrangements attached to it may become a hindrance to people with ID exercising sexual autonomy. The family caregivers felt responsible for the young adults’ behavior and determined what was appropriate or not with regards to the young adults’ sexuality. Concerns about the young adults’ future care were central in the family caregivers’ responses. We conclude that without the appropriate forms of support for both the young adults and their caregivers, the young adults will continue to be policed by the family caregivers and not have choices and opportunities to enjoy and express their sexuality. The support interventions needed should alleviate the burden of care from the family caregivers and also ensure independent living and more choices for the young adults with ID.
There has been increasing research on the experience and needs of caregivers for persons with YOD, who are mainly spouses. Yet one little-explored area is their evolving parental role. As the person with YOD becomes less able to parent, the partner must take on more and more parental responsibilities. This occurs in much-changed familial context, with children often asked to assume caretaking roles and experiencing strong feelings such as grief, anger, and fear. How do the parents without YOD understand and negotiate their ever-changing parenting role, and how do their children experience it? We conducted in-depth, semi-structured interviews with four parents without YOD (coincidentally all mothers) and eight children ages 16–20 (3–18 when parent was diagnosed) regarding the changing nature of the parental-child relationship. These data were analyzed using thematic narrative analysis, in which respondents' material is closely read as it is gathered and analyzed for patterns. Three primary themes emerged. First, there are significant changes in family structures and role. Mothers increasingly assume all parental responsability. Children assume roles of carers and earners, and at times reluctant decision-making partners. Such responsabilities can feel overwhelming at times. However, the children discribed not wanting to burden mother with their feelings and experience, a second prominent theme. Finally, such muting of their experience likely contributes to mothers feeling they are managing the YOD so as to minimize the impact on their children, creating divergent experiences of the YOD on family life. Facilitating family members' articulation of what feel like “inadmissible” feelings, improving familial communication, and developing a range of support and resources are all important areas for intervention.
Research on informal care for older adults tends to consider middle- and upper-class individuals. Consequently, less is known about caregiving among low-income families. We present findings from an exploratory qualitative study of low-income African American mothers (n = 5) and their caregiving daughters (n = 5). Guided by a feminist framework, we consider how individual, familial, and societal factors contribute to the intersectional complexities of caregiving. Despite the unavailability of formal resources, we found the 10 women positive in their outlook. Furthermore, this study contributes to a growing body of research that identifies both negative and positive aspects of caregiving among an underrepresented population.
Provision of informal care is declining in South Korea. Informal caregiving is examined in South Korea using longitudinal data. The results are that women with a dependent disengage more from caregiving than men; caregivers are young rather than old, and more frequently live in rural areas. They receive more financial transfers from non-cohabiting relatives and have fewer children than non-caregivers with a dependent adult. Both caregivers and non-caregivers are less likely than those without a dependent adult to give money to non-cohabiting relatives. Educational level does not influence the probability of having a dependent relative or, among people with a dependent, of being a caregiver. Among people with a dependent adult, wage earners are more likely to provide care than the unemployed. The time spent in caregiving depends more on the dependent's demand than on the caregiver's capacity to provide support.
Vietnamese are the largest Asian ethnic group in Houston, Texas; however, research on this population is scarce. To address this dearth of knowledge, we developed the Vietnamese Aging and Care Survey. The objective of the study was to explore the sociodemographic and health characteristics of Vietnamese adults aged 65 years and older (n = 132) and their family caregivers (n = 64). Adult-child caregivers (n = 41) were aged between 21 and 65 years old. The majority were married, working, female, and in good to excellent health. Spousal caregivers (n = 23) were between 57 and 82 years old, retired, female, and in fair to good health. Adult children received more caregiving-related help from others compared to spousal caregivers; however, they felt more caregiver burden, had more perceived stress, and were in challenging relationships with care recipients. Differences in life stages of adult-child versus spousal caregivers may contribute to these results. Implications are discussed.
I investigate local explanations for a common family configuration of care for older relatives on the island of St. Croix, U.S. Virgin Islands: the "lone family caregiver." Through the examination of a paradigm case emerging from these explanations, I argue that local logics can divest some children of obligations to care for their older parents. I suggest that this case is an important addition to recent discussions within the anthropology of care that emphasize how families practice "care across distance," as it offers an alternative example of how families manage care in the context of migration.
This study explores experiences of mothers in Sweden who care for their adult children suffering from severe mental illness. Using 15 interviews with mothers from 40 to 80 years old, the article examines how predominant professional knowledge and sanism constructs the mothers and their children as deviant and what counterstrategies the mothers develop as a response to these experiences of discrimination. The findings show that the mothers’ experiences are characterized by endless confrontations with negative attitudes and comments that have forced them to go through painful and prolonged processes of self-accusations for not having given enough love, care, support and help in different stages of their children's life. But the mothers’ experiences also reveal important aspects of changes over the life span. As the mothers are ageing, the relationship between them and their children becomes more reciprocal and the ill child may even take the role as family carer.
The present study aimed to examine the association between community social capital and positive caregiving experiences among adult-children caregivers of disabled older adults in urban China. Data for this study were derived from the 2016 wave of the Longitudinal Study on Family Caregivers for Frail Older Adults Aged 75 or Above in Shanghai. The final analysis featured 440 disabled older adult and adult-children caregiver dyads. Multiple indicators and multiple causes modeling was used to test the proposed model from a structural equation modeling perspective. Provision of support to others was significantly associated with self-affirmation. Citizenship activity was significantly associated with life enrichment. Support of units (i.e., employers) was significantly associated with self-affirmation and life enrichment. The findings support the integration of the stress process model and social capital theory and highlight the important role of community social capital in enhancing the subdimensions of positive caregiving experiences. Policy and intervention implications are discussed.
Alzheimer’s disease is the most common type of dementia, accounting for 60–80 percent of cases. The disease causes devastating impairment and often loss of cognitive and relational functioning for the individual and creates disorder and chaos for the family system. Even when not stepping into the formal role of caretaker, children of parents with Alzheimer’s disease experience increased vulnerability to physical and psychological illness, changes in family roles, and uncertainty about navigating a relationship with a parent they no longer know. In the present study, I sought to understand, through the lens of identity and identity-work, how adult children of parents with the disease perceived that their communication with and about the parent changed. Data from interviews with 12 adult children, none of whom were formal caregivers to their parents with the illness but all reported experiencing shifts in their identity and roles as a child of a parent with the disease, revealed four significant communication changes: communicating with a parent who was the same but different, communicating in multiple roles, correcting or reprimanding the parent, and managing parent’s private information. I discuss these findings, their implications, practical suggestions from the data, and suggested areas of future research.
Objective: Recent studies have described worry about caregiver performance (WaP) as a distinct dimension of caregiver burden. We aimed to explore care recipient and caregiver characteristics between the concordant and discordant WaP groups in a population of caregivers of older adults with cognitive impairment. The secondary objective is to explore if there are differences between high and low WaP subsets in the 'doing more' and 'doing better' groups. Design, setting and participants: This is a retrospective study of 936 dyads of community-dwelling older adults with cognitive complaints and their primary family caregiver from a hospital in Singapore. Measurements: We performed descriptive and inferential statistics of the characteristics of caregivers and patients. We categorized caregiver-patient dyads into four groups, namely concordant (high vs low WaP) and discordant ('doing more' vs 'doing better') groups. For both concordant and discordant groups, we further defined low and high WaP subgroups using tertile cutoffs. Results: The concordant low WaP group is predicted by the spousal relationship (p<.001) and care recipients with fewer neuropsychiatric symptoms (p<.001). There is no significant difference between the discordant groups, which were predominantly the adult children. Further analysis of subgroups found that in the 'doing better' group, there were more spouses in the high as compared to low WaP subgroups, with the reverse true in the 'doing more' group. In the 'doing more' group, caregivers with high WaP also had higher total ZBI (p<0.05) with higher factors (Fl, F2 and F3) scores (p<0.05). They also endorsed higher NPI-Q scores (p=0.045) particularly in the domain of depression / dysphoria (p=0.034). These differences are not seen in the 'doing better' group. Conclusion: Our study suggests an association with caregiver characteristics (adult child) and disruptive behavior in the 'do more' high WaP discordant group. Delineating into the high and low WaP subgroups can help us identify the 'do more' high WaP subgroup that merits further attention and early intervention.
Primary family caregivers of patients with dementia often experience high caregiver burden and significant decline in a range of health outcomes. The current study examined the relationship between medical comorbidities of inpatients with dementia and caregiver burden in adult–child primary caregivers, and the buffering effect of having a secondary caregiver on the relationship between patients' comorbidities and caregiver burden. The study is a secondary analysis of data from a cross‐sectional observational study design. The sample comprised 477 dyads of inpatients with dementia and adult–child primary caregivers attending the neurological department of two grade A hospitals. All the inpatients were assessed with the Charlson Comorbidity Index (CCI) and the Mini‐Mental State Examination (MMSE). All the adult–child primary caregivers were assessed with the Zarit Burden Interview (ZBI) and completed the questionnaires on socio‐demographic data, caring hours, presence of secondary caregiver, and the level of impairment of the patient. Higher burden was associated with higher scores on the CCI and having a spouse of the patient as the secondary caregiver. A significant interaction occurred between the CCI and caregiver burden when having a spouse as the secondary caregiver, indicating the negative effect of the CCI on caregiver burden was greater when the spouse of the patient served as the secondary caregiver. In summary, the negative impact of patients' comorbidities on caregiver burden in adult–child primary caregivers was heightened when the secondary caregiver role was undertaken by the spouse of the patient with dementia. These results may inform programmes targeted to improve care arrangements for people with dementia and their caregivers.
Accessible summary: There are a large number of adults with learning disabilities who live with and are cared for by their parents.There is a need for interventions to support older carers with their caring role and to plan for a time when they can no longer continue caring.This research looked at a local support service in England that aimed to support carers over 55 who had an adult child with a learning disability living at home.Twelve carers were interviewed individually.The study highlights the unmet needs of older family carers and shows the value of support from a carer perspective.
Background: There are a significant number of adults with a learning disability who live with and are cared for by their parents. There is a pressing need for interventions to support older parent carers with their role and to plan for a time when they can no longer continue caring. This article reports on the experiences of older parent carers who have been in receipt of an intervention to support future planning, in a rural part of England, delivered to older carers of their adult children with learning disabilities. Methods: Semi‐structured carer interviews (n = 12) were conducted and analysed thematically. Results: Four themes were identified (a) emotional needs of carer, (b) future planning, (c) accessing other services and resources and (d) links to adult care services. Carers welcomed the flexibility of the intervention and its focus on support for them, relieving their sense of isolation. Conclusions: The research highlights the unmet needs of older family carers and shows the value of tailored support from a carer perspective. The findings have implications for national social care provision delivered to carers of adult children with learning disabilities in rural areas.
Background and Objectives Family carers of people with dementia (PWD) experience high rates of depression and anxiety. However, the factors that are associated with these mental health concerns among family carers are not well understood. The purpose of this review was to identify factors that are associated with depression and anxiety in family carers of PWD. Research Design and Methods A systematic review was conducted of studies that examined depressive or anxiety symptoms among family caregivers of community-dwelling older adults with dementia. Twenty-six studies met inclusion criteria and were included in the review. Results Depressive and anxiety symptoms were related to demographic factors, dementia characteristics, carer psychological and social factors, and dyadic relationship factors. Some prominent factors were consistently associated with depressive symptoms across studies. Female carers and adult–child carers, rather than spousal carers, were more likely to experience depressive symptoms. Carers' coping strategies and activity restriction were also found to be strongly related to depressive symptoms. Severity of dementia-related problematic behaviors was related to carers' depression and anxiety symptoms. In addition, relationship type and quality were important factors associated with depressive symptoms. Discussion and Implications Several important risk factors for carer depression were highlighted in this review. However, a lack of measurement precision and a reliance on cross-sectional studies limits our understanding of exactly how depression and anxiety progress during the caregiving experience. The implications for prevention and intervention programs for depression and anxiety are discussed, as well as suggestions for future research to improve the quality of research in this area.
Caregiver programs provide specialized services and resources to reduce caregiver stress and improve family quality of life and health. Although there are resources and community services available, Chinese American family caregivers' perceptions on caregiver programs and how specific services help to viably reduce their stress has yet to be examined. An in-depth interview was conducted with four Chinese American family caregivers in exploring their caregiving experiences and program service use; two of the caregivers were spouses and two were adult children. Content analysis revealed that their value of familial piety, and their need to ameliorate caregiver stress fueled their interest in new interventions to improve their quality of life and health. Spousal caregivers and adult children caregivers disclosed different needs due to caregiving, and adult children caregivers were less resistant to new interventions. The results of this study fill the knowledge gap on Chinese American family caregivers' perception of caregiving in a cultural context as well as their needs. Suggestions for future research are to better understand the effectiveness of the specific services within caregiver programs that are effective in reducing caregiver stress among Chinese American family caregivers.
Stamm’s Professional Quality of Life Scale (ProQOL) was utilized to examine compassion fatigue and compassion satisfaction among three types of caregivers: formal (employed in a caregiver role), adult child (caring for an aging parent), and spouse/partner (caring for significant other). Data were collected from a sample of 87 adults who were currently (for 6 months or longer) providing care to an individual 65 years of age or older. The results revealed that formal caregivers had significantly higher compassion satisfaction scores compared to both adult child and spouse/partner caregivers. Additionally, results indicated that formal caregivers had significantly lower compassion fatigue scores than adult child caregivers. Although limited by the homogeneities in the sample of convenience, this study suggests that family caregivers could benefit from additional support in providing care. Furthermore, research should be conducted to examine factors that contribute to formal caregivers’ increased satisfaction and decreased fatigue in an effort to inform family caregivers.
Background: Although a number of studies have examined social support needs among women with breast cancer, little attention has been paid to the burden and needs for social support among their family caregivers, who often report mental and physical problems associated with caregiving. Objective: This study aims to examine the role of social media in providing social support for offspring caregivers of breast cancer patients. Methods: A peer support group, "Having a breast cancer patient in my family," was created on Douban (www.douban.com), one of China's most popular social media sites, to provide social support to family caregivers of women with breast cancer. We analyzed the content of 784 messages in the discussion threads where the latest update fell between January 2017 and July 2017. Results: The results revealed that the majority of messages (n = 690, 88.0%) provided or requested social support, and more than 64.5% of these messages (n = 445) were posted by caregivers who were offspring of the cancer patients. The results also suggested that these caregivers requested and provided informational support more frequently than they did emotional and instrumental support. Conclusions: This study suggests that social media could be a plausible platform for offspring caregivers of breast cancer patients to share caregiving experiences, access informational resources for their care recipients, gain knowledge about breast cancer prevention, and obtain emotional encouragement. Theoretical as well as practical implications are discussed.
Purpose: Although family caregivers (FCs) of older adults with cancer (OACs) provide invaluable assistance by fulfilling multiple tasks along the cancer trajectory, evidence suggests that their needs are poorly assessed, and there is a scarcity of supportive interventions that influence their well-being. Viewing these issues as opportunities for improvement, we conducted this qualitative study to understand FCs’ needs and identify promising needs-focused interventions. Methods: This descriptive interpretive qualitative study was conducted in Quebec, Canada, in a French Canadian Oncology Clinic. Participants were FCs who were spouses or adult children (n = 25) of OACs aged 70 years or older. Data were collected via focus groups and were analyzed using an ongoing analytic process following each interview. Results: Three types of needs were of particular importance: information, relationships between FC and others, and care for oneself. The need for information was described in terms of the content, timeliness, and modalities in which information should be verbalized and delivered. The need for relationships specifically targeted health care providers (HCPs), family members, and OACs. The need to care for oneself was recognized as important throughout the cancer trajectory but also represented a challenge. Participants proposed innovative ideas for interventions, resources, and strategies for each type of need. Conclusions: According to our results, HCPs should systematically include FCs into OACs’ care plan through the use of concrete actions such as the “family systems approach” suggested by Duhamel, and integrate a systematic FC’s needs assessment.
Background: People with intellectual disabilities (ID) are usually cared for by their own parents, families or informal caregivers. Caring for a person with ID can have a negative impact on caregivers' mental health (burden, depression, anxiety). The main aim of the EDUCA-IV trial was testing the efficacy of a psychoeducational intervention program (PIP) versus standard practice and to see whether the PIP intervention would reduce the caregiver's burden at post-intervention (4 months) and at follow-up (8 months). Method: This was a multi-centre randomised controlled trial including 194 caregivers (96 randomised to PIP, 98 to control condition). PIP intervention consists of 12 weekly group sessions. The control group received treatment as usual. Primary outcomes measured included the Zarit Burden Interview (ZBI). Secondary outcomes were caregivers' mental health (GHQ-28), anxiety (STAI) and depression (CES-D). Results: The decrease of ZBI scores was not significant at 4 months. There was significant decrease in the GHQ scores at 4 and 8 months. CES-D showed relevant results at follow-up. Intention to treat analyses showed similar results. Conclusions: The PIP intervention seems not to be effective reducing burden, but appears to have a positive result on general mental health. The program was well received and valued by caregivers.
This study investigates the relationship between the provision of informal care to older parents/parents-in-law and the employment status of adult children in mid-life. The study analyses unique panel data for a cohort of individuals born in 1958 in Britain, focusing on respondents at risk of providing care (i.e. with at least one surviving parent/parent-in-law) and in employment at 50. Logistic regression is used to investigate the impact of caring at 50 and 55 on employment status at 55, controlling for socio-demographic characteristics, the respondent's health status and their partner's employment status. Separate models examine (a) the likelihood of exiting the labour force versus continuing work, and (b) amongst those continuing in work, the likelihood of reducing hours of employment. Different types of care (personal, basic and instrumental support) are distinguished, along with hours of caring. The results highlight that providing care for more personal tasks, and for a higher number of hours, are associated with exiting employment for both men and women carers. In contrast, the negative impact of more intense care-giving on reducing working hours was significant only for men - suggesting that women may juggle intensive care commitments alongside work or leave work altogether. Facilitating women and men to combine paid work and parental care in mid-life will be increasingly important in the context of rising longevity.
Background: A shift in the work-divide among generations and an ageing population have altered the balance of care and support between families and welfare states. Although state policy has increasingly acknowledged that older adults ageing in place receive support from family members, how adult children perceive their collaboration with their parents and health care professionals in reablement services remains unclear. The aim of this study is to identify how adult children perceive the collaboration between older parents, family members, and health care professionals in reablement services. Methods: This study has a qualitative research design with a constructivist grounded theory approach. In total, 15 adult children - 6 sons, 8 daughters, and a daughter-in-law, aged 47-64 years - whose parents had received reablement services, participated in in-depth interviews. Results: Our findings clarify how children and their older parents' reablement services can collaborate to support how the adult children manage and maintain both their own and their parents' everyday lives. The core category derived from our data analysis was the art of maintaining everyday life, with four subcategories indicating the different dimensions of that process: doing what is best for one's parents, negotiating the dilemmas of everyday life, managing parents' reablement, and ensuring the flow of everyday life. Conclusion: To promote collaboration among older adults, their children, and health care professionals in reablement, health care professionals need to proactively involve older adults' family members in the reablement processes, particularly because older adults and their children do not always express all of their care-related needs to reablement services.
Providing care to persons with Alzheimer's disease poses challenges for spouses and adult children, including experiencing stigmatic beliefs towards themselves—i.e., family stigma. Drawing on the frameworks of ethnicity and stigma and ethnicity and dementia, the current study explored stigmatic experiences among Israeli Arab family caregivers of a person with Alzheimer's disease. Three focus groups with 20 caregivers (adult children and spouses) of persons with Alzheimer's disease were conducted. Data were analyzed using theory-led thematic analysis. Caregivers reported experiencing family stigma in two dimensions: public and affiliate stigma, in both the existence of an attribution process in which cognitive stereotypes elicit negative and positive emotions which in turn provoke behavioral attributions, was evident. Family stigma was found to be a discernible feature of everyday reality among Israeli Arab caregivers of persons with Alzheimer's disease and stress the importance of developing management strategies that are tailored to the socio-cultural characteristics of the caregivers.
The care of older adults with disabilities (OADs) in China is mostly provided by their adult offspring. As the population continues to age, carer stress will increase. A survey of 900 adult child caregivers of OADs was conducted in Nanjing City, Jiangsu Province, China, and used to investigate the status and stress levels of caregivers in order to explore effective support for offspring caregivers and suggest improvements to the social care system. Multiple linear regression models were used to examine the effects of coping strategies on carer stress. Caregivers experienced stress at moderate or high levels due to physical, psychological, financial, and work issues. Stress was significantly associated with OADs' health status and self-care ability, and the amount of care time. Caregivers sought help from their families to care for elderly parents, which significantly relieved stress. The purchase of social care services and professional medical services for OADs significantly reduced stress; however, for elderly persons with high self-care ability, the purchase of social care services increased caregiver stress, while government-subsidized family nursing allowances reduced it. It is necessary to focus on the role of family care to stimulate mutual family support, and to integrate society and government support systems.
Aim: The present study aimed to examine the associations among behavioral and psychological symptoms of dementia (BPSD) of persons with dementia (PWD), care burden and family‐to‐work conflict (FWC) of employed family caregivers. Method: A cross‐sectional study was carried out with employed adult daughter or son (or in‐law) caregivers for PWD from two rural cities in Japan. FWC, care burden and the degree of BPSD were evaluated by the Survey Work‐Home Interaction‐NijmeGen, Zarit Burden Scale‐Short Version and Dementia Behavior Disturbance Scale, respectively. Of the 200 questionnaires distributed, 130 were returned. A total of 53 respondents were not employed, and seven questionnaires had missing data for demographic variables, Survey Work‐Home Interaction‐NijmeGen, Zarit Burden Scale‐Short Version or Dementia Behavior Disturbance Scale. Thus, complete data from 70 respondents were analyzed through structural equation modeling. Results: The mean age of employed family caregivers was 56 years, and 34 (48.5%) were men. The mean age of PWD was 84 years, and there were 68 (68.6%) men. The path model with a good fit was shown (root mean square error of approximation 0.136, comparative fit index 0.960 and goodness of fit index 0.965). The path model showed that BPSD affected FWC, and that the association was partially mediated by care burden. Conclusions: The results show that a decrease in not only care burden, but also BPSD, of PWD is important for employed family caregivers to reduce their FWC and maintain their work–life balance.
Objectives: This study examined whether geographical proximity is a predictor of depressive symptoms, and whether family and friend support can moderate the relationship between geographical proximity and depressive symptoms. Method: A survey of 557 adult child primary caregivers was conducted in Shanghai, China in 2013. Geographical proximity was measured as a categorical variable: coresidence, short distance (less than 30 minutes' travel time), and long distance (more than 30 minutes' travel time). Family and friend support were assessed using the Multidimensional Scale of Perceived Social Support. Depressive symptoms were evaluated using the Center on Epidemiologic Studies Depression Scale. Multiple regression analyses and interaction terms were used to test the moderating roles of family and friend support. Results: Adult child caregivers who live more than 30 minutes away from care recipients experienced higher depressive symptoms than coresiding caregivers (β =.114, p <.01). Family support (β = −.408, p <.05) and friend support (β = −.235, p <.05) were protective factors that lessened depressive symptoms for long-distance adult child caregivers. Conclusion: This study adds spatial dimension to caregiving literature and extends stress process theory. These findings have important implications for service planning and social support for adult child caregivers.
The prevalence of terminally ill patients, who die at home, is increasing. The aim of this study was to address the meaning of being young adults, who were the caregivers of their dying parents. In-depth, semistructured interviews were conducted with 14 Israeli Jewish young adults, who had been the primary caregivers for parents who had cancer and eventually died at home. Three themes emerged: (a) "I was Chosen and was led into that situation": modes of taking on and performing the role of a caregiver, (b) "My life was on hold": the experience of performing the caregiving role, and (c) "I underwent . . . the real school of life": caring for the dying parent as an imprint on self-development. Participants integrated compassionate caring into their identity, reflecting an empowering encounter of young carers with their dying parents as a process of growth in the face of harsh, stressful experiences.
When the normal progression of life for an aging person is interrupted by a decline in physical and or mental abilities, adult children are often suddenly faced with assuming care of their parent(s). Currently, adult child caregivers of aging parents work up to 100 hours per month at caregiving. Most existing literature is focused on informal caregivers, which can consist of spouses, relatives, and friends' caregiving for persons with debilitating illnesses. Despite the amount of time dedicated to parental caregiving, little is known about the experience of this exclusive caregiver group. The aim of this study was to explore and describe the experience of adult children caregiving for aging parents at any stage of health. A qualitative phenomenological approach was used to interview six daughters and one daughter-in-law. Themes were identified and presented through the use of narratives and poetry. The participants expressed they felt unprepared for caregiving and their culture had a direct impact on the expectations of caregiving. A myriad of unpleasant emotions and loss were voiced, yet their outlooks remained extremely positive. The overall health of adult child caregivers needs to be supported to prepare them for what lies ahead with caregiving. Caregivers report their loved one(s) required several hospitalizations, which lead to performing medical/nursing tasks at home. Nursing then has a unique opportunity during discharge preparation, to identify those who need community, state, and faith-based services. Replication is needed to address the limitation of the number of participants, ethnic, and gender diversity.
There is substantial evidence suggesting that Western and non-Western caregivers of patients with Alzheimer's disease have different caregiving experiences depending on the cultural values they adopt. Although family-centered constructs such as familism and filial piety have taken some attention, there is still a paucity of research on how cultural values and norms shape caregiving appraisals, coping strategies, and formal service use specifically in Eastern-oriented contexts. The aim of this study was to investigate Turkish adult children caregivers' perceptions of Alzheimer's disease and caregiving experience. Researchers conducted in-depth interviews with 20 primary caregivers and analyzed data with interpretative phenomenological analysis. First, most caregivers viewed family disharmony as the main cause of the disease. Second, although burden is evident in their accounts, caregivers reported positive changes during their caregiving experiences, as well. Third, caregivers employ religious/fatalistic coping and they benefit from social support during their caregiving experiences. Forth, most caregivers opposed to nursing home placement because they view it as a morally improper act; they are afraid of neighborhood pressure; they perceive caregiving as a child's responsibility; they do not want their children to do so; and they do not trust conditions of care facilities in Turkey. Findings indicated that Eastern norms and values might have differential impacts on Alzheimer's disease caregiving outcomes. Hence, we invite mental health professionals to integrate culturally sensitive aspects into the possible intervention programs targeting Alzheimer's disease caregivers from non-Western contexts.
Due to projected growth of the 65-and-older population and concerns of an impending care gap, reliance on informal caregivers is expected to increase. Improving support for informal caregivers is viewed as a national priority, yet research related to the unmet support needs of informal caregivers is limited. The purpose of this cross-sectional correlational study was to examine predictive relationships between contextual factors (caregiving relationship and type of illness) and environmental factors (rurality) and the unmet support needs (classes, service access, support groups, counseling, and respite) of informal caregivers of older adults. The theoretical framework was Bronfenbrenner’s ecological systems theory. Archival data were drawn from the 2015 Behavioral Risk Factor Surveillance System optional caregiver module dataset provided by the Centers for Disease Control and Prevention. Findings from multiple logistic regression analysis revealed that spousal caregivers had 42.7% lower odds than adult child caregivers of reporting unmet support needs related to service access. Dementia caregivers had 2.05 times higher odds of reporting unmet support needs of counseling, 1.31 times higher odds of reporting unmet support needs related to service access, and 1.91 times higher odds of reporting unmet support needs for respite care, relative to other caregivers. Caregivers residing in a suburban county had 28.7% lower odds and caregivers not residing in a metropolitan statistical area (MSA) had 30.5% lower odds of reporting unmet support needs related to service access, relative to caregivers residing in the center city of an MSA. Health care leaders and policymakers may use the findings to distribute resources and tailor interventions to better meet the needs of informal caregivers of older adults.
Health-care expenditures and the demand for caregiving are increasing concerns for policy makers. Although informal care to a certain extent may substitute for costly formal care, providing informal care may come at a cost to caregivers in terms of their own health. However, evidence of causal effects of care responsibilities on health is limited, especially for long-term outcomes. In this paper, we estimate long-term effects of a formal care expansion for the elderly on the health of their middle-aged daughters. We exploit a reform in the federal funding of formal care for Norwegian municipalities that caused a greater expansion of home care provision in municipalities that initially had lower coverage rates. We find that expanding formal care reduced sickness absence in the short run, primarily due to reduced absences related to musculoskeletal and psychological disorders. In general, we find no effects on long-term health outcomes.
Purpose of Study To assess trends in family caregiving between 1999 and 2015. Design and Methods We construct nationally representative profiles of community-dwelling older adults receiving help with self-care or indoor mobility and their "primary" family or unpaid caregiver using the 1999 and 2004 National Long Term Care Survey, 2011 and 2015 National Health and Aging Trends Study, and linked caregiver surveys. Trends are examined. Results Older adults receiving help were incrementally younger, more racially diverse, and better educated in 2015. Primary caregivers overwhelmingly continued to be spouses and adult children. Arrangements were increasingly 4 years or longer in duration (shifting from 44.8% in 1999 to 60.5% by 2015). On average, primary caregivers provided about or in excess of 30 hr per week at all four time points. Spouses provided fewer hours of care, were twice as likely to work, and half as likely to report substantial emotional, physical, and financial difficulty due to caregiving in 2015 than 1999. Adult children provided comparable hours of care to a more impaired population; a similar proportion reported substantial caregiving-related difficulty at each time. Use of respite care nearly doubled from 8.5% in 1999 to 15.7% in 2015. Dementia caregivers were less likely to report substantial physical and financial difficulty and more likely to use respite care in 2015 than 1999. Implications Family caregivers' circumstances generally improved during the 16-year period. Results diverge from prevailing concerns regarding the state of family caregiving and demonstrate the importance of longitudinally monitoring trends in late-life family caregiving.
We investigate how daughters’ feelings of loneliness are impacted when widowed parents develop health limitations, and when daughters take on personal care tasks in response. Using longitudinal data from daughters of widowed parents drawn from the French Family and Intergenerational Relationships Study (ERFI, 1485 observations nested in 557 daughters), we assess (a) whether health limitations of widowed parents are associated with daughters’ feelings of loneliness regardless of whether or not daughters provide personal care and (b) whether there is an effect of care provision on loneliness that cannot be explained by parental health limitations. Fixed effect regression analyses show that widowed parents’ health limitations were associated with raised feelings of loneliness among their daughters. No significant additional effect of providing personal care to a widowed parent was found. Prior research on the impact of health limitations of older parents on the lives of their adult-children has focused mostly on issues related to informal caregiving. Our findings suggest that more attention to the psychosocial impact of parental health limitations—net of actual caregiving—on adult children’s lives is warranted.
Family conflict and estrangement can complicate caregiving tasks later in life. Research suggests that adult children who are estranged do not visit their parents when their parents are sick, despite societal pressures to reconcile and take care of them. Parents also report feeling surprised that their estranged children did not return home when they were in need, which ultimately solidified the estrangement. This article offers a broad discussion of the existing research on family conflict and caregiving, then focuses more specifically on family estrangement.
Objectives: To investigate kinship differences in the caregiver stress process by developing multiple mediation models for two distinct caregiver subgroups (spouses and adult children of older adults living with dementia). The effect of four potential mediating variables (mastery, self-efficacy, satisfaction with social support, positive caregiving appraisals) on the relationship between perceived burden and depression was evaluated.; Method: Family caregivers of a person living with dementia were recruited through national dementia and carer organisations. Participants completed a paper-based or electronic version of the study survey. A bias-corrected, accelerated bootstrapping method was used to test the effect of the four proposed mediating variables on the relationship between perceived burden and depression in each caregiver subgroup (spouses and adult children).; Results: Perceived burden was directly and significantly related to depression for both spouse caregivers and adult child caregivers. The mediation models explained approximately 50% of the variance in the burden-to-depression pathway for both caregiver subgroups. Mastery and social support (but not self-efficacy, nor positive caregiving appraisals) were found to individually significantly influence the impact of perceived burden on depression in spouse caregivers. All four proposed mediators failed to reach statistical significance as individual mediators of the burden-to-depression pathway in adult child caregivers.; Conclusion: These findings demonstrate differences in the dementia caregiver experience according to kinship, and that certain mediating variables are more relevant for some subgroups of caregivers than others. Implications for the design of psychosocial interventions are discussed.
The quality of parent-child relationships would affect adult children’s attitudes and behaviors toward caring for their ill-parents. Perhaps, this is peculiarly true for Chinese societies where the traditional value of filial piety is emphasized. This study aimed to investigate how filial piety might bear on care burden experienced by Chinese family caregivers of people with type 2 diabetes (T2DM) in Hong Kong. Altogether 150 Chinese family caregivers participated in the survey by completing the Caregiver Burden Inventory, Caregiving Difficulty, and Contemporary Filial Piety Scale and answering some demographic questions. The results indicate that family caregivers of people with T2DM experience more difficulty in social caring than in daily caring and physical caring and their burden mainly centers around the time pressure of being preoccupied with the caregiving work. Caregiver burden is indicated positively by caring difficulty and caregiver’s age and negatively by filial piety. It appears, therefore, that nurturing, treasuring this traditional Chinese value may alleviate burden and stress relating to caring for Chinese family members with T2DM. Implications for counselling practice in supporting Chinese family caregivers of diabetic patients - including assessment, intervention, and cultural sensitivity - were put forward.
During later life, older adults may be caregiving for people with late-onset mental health issues. The situation can alter family relationships and cause role transitions. This article offers three late-life mental health scenarios that require spouses or partners, adult children, and-or others to deal with an older adult family member's mood and behavior changes. Through case examples, the author explores geriatric depression, complicated grief, and provision of extended care for persons with severe mental illness, and highlights support for older care providers.
Aims: To identify what factors are associated with the caregiver burden of spouse caregivers, adult child caregivers, and parent caregivers. Background: Caregivers often feel stressed and perceive caregiving as a burden. The caregiver burden has been little studied from the perspective of the personal relationship between caregiver and care recipient. Design: Cross‐sectional study. Methods: A random sample of 4,000 caregivers in Finland was drawn in 2014 and those who remained either spouse, adult child, or parent caregivers at data collection were included in the analysis (N = 1,062). Data collection included recipients’ characteristics. Caregivers’ perceived burden was measured using the Caregivers of Older People in Europe index. General linear models were used to explain perceived caregiver burden. Results: Care recipients’ low level of cognitive function was associated with greater perceived burden. Higher quality of support was associated with lower perceived burden among female and male spouse caregivers, daughter caregivers, and mother caregivers. Low cognitive function explained 3–6% and high quality of support 2–5% of the total variation in the burden explained by the models, which ranged between 45–55%. Conclusion: Because cognitive challenges of care recipient are associated with greater perceived burden and high quality of support with lower burden among most of the caregiver groups, high‐quality tailored nursing interventions will be needed especially for the caregivers of the most frail care recipients
Background and Objectives: We examine trends in informal care from the perspective of both community-dwelling disabled older Americans and their caregivers from 1982 to 2012. We decompose hours of care received from spouses and children according to changes in: (a) the number of potential spousal and child caregivers ("family structure"), (b) the likelihood that existing spouses and children are caregivers ("caregiving propensity"), and (c) the amount of care provided by individual caregivers ("time burden").; Research Design and Methods: We examine two sets of time trends based on distinct samples of community-dwelling disabled older Americans from the 1982-2004 waves of the National Long-Term Care Survey (NLTCS) and the 2000-2012 waves of the Health and Retirement Study (HRS).; Results: Existing spouses' and children's decreasing likelihood of being caregivers led to fewer spousal and child caregivers per disabled older person in the 2004 NLTCS than the 1982 NLTCS. However, the NLTCS and HRS time trends suggest that the amount of care provided by individual caregivers was similar from 1989 to 2012.; Discussion and Implications: Because individual caregivers' time burden has remained fairly constant since at least 1989, advocacy on behalf of policies that promote more and better support for caregivers is appropriate.
Informal caregiving is a critical component of the US long-term care system, but can have significant negative impacts on caregiver employment, finances, and well-being. An online survey of Colorado caregivers was piloted in 2016-17 to explore whether workplace and social policies such as access to paid family leave and public health insurance can buffer the negative financial impacts of caregiving and help caregivers to remain in the workforce. Using standardized measures, the survey assessed caregivers' employment and financial status, well-being (physical and mental health, caregiver strain, benefits of caregiving), access to workplace supports, and covariates (e.g., caregiver demographics, health, social support, and service utilization). Ninety-five caregivers, recruited through community agency partners, completed the survey. Respondents were predominately female (89%), middle-aged (M = 57), non-Hispanic White (64%) or Latino/a (22%), and caring for a parent (40%) or spouse (30%) for over one year. Half (51%) reported working full- or part-time jobs, while 16.4% had stopped working because of caregiving. In multivariate regression modeling, predictors of financial strain included the care recipients' financial strain and the caregiver's reduction or ceasing of work. Medicare may be protective to minimize caregivers' need to reduce or cease work. Implications for caregivers' ability to stay engaged in the workforce and prepare for their own retirement are explored.
Approximately 34 million family and friends provided unpaid care to individuals aged 50 and older in 2015. It is difficult to place a value on that time, because no payment is made to the caregiver, and multiplying caregiving hours by a wage does not account for the value of lost leisure time, implications for future employability and wages, or any intrinsic benefits accrued to the care provider. This study used a dynamic discrete choice model to estimate the costs of informal care provided by a daughter to her mother, including these other costs and benefits not typically accounted for, and compared these cost estimates for 4 categories of the mother's functional status: doctor-diagnosed memory-related disease, limitations in activities of daily living (ADLs), combination of both, cannot be left alone for 1 hour or more. We studied women aged 40 to 70 with a living mother at the start of the sample period (N=3,427 adult daughters) using data from the Health and Retirement Study (1998-2012). The primary outcome was the monetized change in well-being due to caregiving, what economists call "welfare costs." We estimate that the median cost to the daughter's well-being of providing care to an elderly mother ranged from $144,302 to $201,896 over 2 years, depending on the mother's functional status. These estimates suggest that informal care cost $277 billion in 2011, 20% more than estimates that account only for current foregone wages.
Accessible Summary: This study describes an Irish‐based study that examined how families of children with Down syndrome living in Ireland adapt to their child’s diagnosis. We found that good family communication and family hardiness have a positive affect on how families adapt. Families of children with Down syndrome have the potential to lead full and productive lives and positively adapt to their child’s diagnosis. Abstract: Background: Down syndrome is a genetic condition that affects people of all races, nationalities and socioeconomic status. The incidence of Down syndrome in Ireland is estimated to be 1 in 546, with approximately 7,000 people with Down syndrome living in Ireland. While some families of individuals with Down syndrome may find it difficult to adapt, other families adapt successfully and some even thrive. The aim of this study, which is guided by the Resiliency Model of Stress, Adjustment and Adaptation was to examine linkages between family demands, family appraisal, family resources, family problem‐solving communication and family adaptation in families of individuals with Down syndrome living in Ireland. Methods: Ninety‐five parents (79 mothers, 16 fathers) of children with Down syndrome aged between 1 and 30 years completed six self‐report measures designed to assess key dimensions of the Resiliency Model of Family Stress, Adjustment and Adaptation. Results: This study found that families of children with Down syndrome can adapt and become resilient. Factors found to positively influence this process include family hardiness and affirming family communication. Factors that negatively influenced this process were incendiary family communication and view of the condition impact. Conclusion: Families of children with Down syndrome have the potential to lead full and productive lives and positively adapt to their child’s diagnosis. Early recognition of the difficulties being experienced by families and the provision of interventions that target and foster positive resiliency traits such as affirmative communication and the development of overall family hardiness are key to adaptation.
No relationships last longer than connections between parents and children, particularly in the era of ever-growing life expectancy. Low fertility and the small number of siblings mean that modern families include fewer members of the same generation and more of a previous one, recasting the balance of exchange between parents, children and grandchildren in terms of space, money and time/care. This book presents and discusses the key findings of the Survey of Health, Ageing and Retirement in Europe (SHARE), focusing on intergenerational relations.
Gender balance in caring is heavily skewed towards women providing the majority of care. This is particularly evident in literature relating to intellectual disability. Using the platforms of mothering and disability to examine the literature, this article sheds light on the cultural norms and societal discourses that influence 'who cares' for children and adults with disabilities. It highlights that 'who cares' is often a socially constructed ideology that results in a reconstructed identity for women. The impact on identity is discussed and suggestions are made regarding how discourse, policy and advocacy can support this cohort of carers.
Purpose: The purpose of this study was to longitudinally explore the experiences of young adult, adult, and older adult intergenerational caregivers caring for a parent with end-stage heart failure (HF). Design: This study was a secondary analysis of qualitative data collected during a longitudinal study that sought to determine the palliative care needs of individuals with end-stage HF and their family caregivers. Methods: Longitudinal interviews from 23 young adult, adult, and older adult children who were caring for a parent with end-stage HF were selected for thematic analysis. Researchers individually analyzed the interviews and then, as a group, came to a consensus about themes. Findings: Five major themes were identified: caregiver resources, role management, caregiver–parent relationships, filial responsibility , and personal benefits and challenges. Conclusions: These intergenerational caregivers struggled to balance their busy lives and caregiving roles. However, most felt supported by other family members or external resources. Longitudinal findings support a need for improved employer-based support for intergenerational caregivers and special attention to young carers in research and practice. Recognition of and advocacy for intergenerational caregivers providing care for a chronically ill parent is needed.
The strain inherent in caregiving relationships between adult children and aging parents is a prominent issue in contemporary China due to a combination of demographic and socioeconomic changes. The purpose of this study was to explore how mutuality, a positive quality of caregiving relationships, contributes to the physical health and mental health (health-related quality of life [HRQoL]) of adult child caregivers [ACCs] of parent stroke survivors. A cross-sectional correlational study was conducted on a nonproportional quota sample of 126 ACCs, using questionnaires of demographics, the 15-item Mutuality Scale, and the Second Version of the Standard 12-Item Health Survey (SF-12v2). Higher mutuality was found to be correlated with better caregiver physical health and mental health. However, after adjusting for the covariates, mutuality significantly explained 4.6% of the variance of caregiver physical health (β = .22, ΔR 2 = .046, p < .01) but it did not significantly explain the variance of caregiver mental health. Although multiple factors correlate with Chinese family caregivers' HRQoL, this was the first study exploring the impact of caregiver-care receiver dyadic relationships on caregiver HRQoL in mainland China by using a mutuality scale with SF-12v2. Despite the fact that the Chinese tradition of filial piety can facilitate mutuality, socioeconomic changes and legislation that require adult children to care for aging parents appear to create high stress among family caregivers. Higher levels of mutuality contribute to better physical health in Chinese family caregivers. Therefore, culturally appropriate family nursing strategies and social policies in China could enhance caregiver mutuality and potentially promote their HRQoL, in particular physical health.
Adults with intellectual and/or developmental disabilities (IDD) in the United States are supported by both formal Medicaid‐funded long‐term services and supports and family caregivers. Lack of alternative housing options and wait lists for long‐term services and supports means the role of the family caregiver is and will continue be critical. Rising long‐term services and supports costs combined with goals to improve care coordination and access to services are driving more states to change the design of their long‐term services and supports systems to a Medicaid‐Managed Long‐Term Services and Supports (MLTSS) approach. Best practices for implementing MLTSS for individuals with IDD include acknowledging the family caregiver role. The current study's aim is to understand how family caregivers and their roles are recognized in MLTSS for adults with IDD in Kansas. Kansas was selected given their unique approach to MLTSS for adults with IDD, referred to as KanCare. In‐depth semi‐structured telephone interviews were completed with 31 stakeholders in Kansas, including statewide/regional representatives (N = 13), service coordination providers (N = 7), and family caregivers (N = 11). Additional family support services were available in KanCare, but families had difficulty accessing them. No formal processes were reported for assessing the needs of family caregivers in KanCare and families found communications with managed care entities challenging. Families reported difficulties with taking on responsibility of managing in‐home supports and there were concerns about being paid to provide care as a guardian. Family caregivers play a critical role in MLTSS, including assisting with care coordination and access to services. However, their role was not formally acknowledged in KanCare. Future research, practice, and policy efforts should focus on promoting family caregiver assessments and identifying best practices for supporting family caregivers in MLTSS.
Background: The increased longevity of individuals with intellectual disability means that ageing parents often play an extended caregiving role into late life. This systematic review evaluates qualitative evidence on futures planning among older parents whose adult children live either in the family home or out-of-home. Method: Electronic databases were searched for studies published between 2000 and 2015. Studies that met the inclusion criteria were analysed using the McMaster Critical Review Form for Qualitative Studies. Results: Of 14 articles reviewed, quality was mixed. Three over-arching themes emerged: (1) external barriers to planning involving reservations about available services; (2) internal barriers preventing parents from planning such as mutual dependency and sense of helplessness; and (3) existence of diverse “plans” and ways of managing the future. Conclusions: Parents are aware of the need to make plans or at the very least have preferences for what they would like to occur. However, a range of external and internal factors pose as barriers to this process.
Purpose of the Study: Adult daughters providing care to aging, ill mothers comprise the most prevalent caregiving dyad. Little is known, however, regarding relationship quality and its impact on care in these dyads, particularly in the context of cognitively intact patients at end of life in hospice. This interpretive descriptive work privileges voices of terminally ill mothers and care-partnering daughters in the home hospice context. Specific aims were to describe and interpret how mothers and daughters: (a) perceive relationship quality and (b) perceive how relationships have developed over time through health, chronic illness, and hospice. Design and Methods: Semi-structured interviews were used to explore interdependent perceptions of relationship quality in 10 terminally-ill mother–adult daughter care dyads. A novel method of qualitative dyadic analysis was developed to analyse dyads in close parallel at both individual/descriptive and dyadic/interpretive levels, staying true to qualitative rigor. Results: A relationship quality spectrum emerged, from Close Friendship to Doing My Duty dyads. Women in Close Friendships revealed concordant narratives and emotionally satisfying relationships; women in neutral or troubled relationships revealed discordant relational stories. In these latter dyads, mothers reported more positive narratives; daughters spoke of relational problems. Implications: This work suggests deeper exploration of mother–daughter dyads within the hospice context and interventions at both individual and dyadic levels to serve relational needs of the dying and their families. The qualitative dyadic approach also offers utility for relational investigations of any dyad.
Understanding patterns of intergenerational support is critical within the context of demographic change, such as changing family structures and population ageing. Existing research has focused on intergenerational support at a given time in the individuals' lifecourse, e.g. from adult children towards older parents and vice versa; however, few studies have focused on the dynamic nature of such support. Analysing data from the 1958 National Child Development Study, this paper investigates the extent to which the receipt of parental help earlier in the lifecourse affects the chances of adult children reciprocating with support towards their parents later in life. The findings show that three-quarters of mid-life adults had received some support from their parents earlier in life, and at age 50 more than half were providing care to their parents. Patterns of support received and provided across the lifecourse differ markedly by gender, with sons being more likely to have received help with finances earlier in the lifecourse, and daughters with child care. The results highlight that care provision towards parents was associated with support receipt earlier in life. However, the degree of reciprocity varies according to the type of care provided by children. Such findings have implications for informal care provision by adult children towards future cohorts of older people, and by extension, the organisation of social care.
A caregiver’s attachment history with their parents may affect the thoughts, feelings, and behaviour they now have as they care for a parent with dementia. Participants were 77 daughters of a parent with dementia. The nature of participant conscious episodic memories of their parental figures and unconscious procedural knowledge of caregiving processes (secure base script knowledge) were identified as two aspects of the caregiver’s relationship history that may impact their involvement in care, relationship conflict, critical attitudes, and strain. The authors findings indicated that the nature of episodic memories of the caregiver relationship history with parental figures were significantly associated with stress and criticism of their parent. Greater unconscious procedural knowledge of the secure base script was associated with caregiver report of less conflict and less involvement in the caregiving tasks. Potential clinical implications of this pattern are also discussed.
The aim of this study was to identify factors associated with family resilience in families caring for a parent with dementia. A mixed-methods approach was followed to collect data from a convenience sample drawn from the Cape Metropolitan area in the Western Cape, South Africa. The study sample comprised 47 families in which adult children were caring for a parent with dementia. The quantitative data analysis was conducted using analyses of variance (ANOVA), Pearson’s product–moment correlation coefficients and a best-subsets multiple regression analysis. Qualitative data were analysed using thematic content analysis. It was found that acceptance, optimism, positive communication patterns, family connectedness, spirituality, social support, economic resources and the effective management of symptoms helped these families adapt to the burdens of dementia care. In addition to expanding the literature regarding family resilience, the findings could be used to develop interventions tailored to the needs of these families caring for a parent with dementia to create a family environment that enhances adjustment and adaptation.
Background Family caregivers of people with dementia have significant unmet health needs. There is a lack of research that differentiates between the needs that are specifically relevant to partner and offspring caregivers. Objective The aim of this study was to examine the health needs of partner and offspring caregivers of older people with dementia, including the barriers they experience in meeting their needs. Method Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analysed using thematic analysis. Results Five themes were identified within the data. The first theme represents caregivers' overall assessment and perception of their health needs. The remaining four themes represent the most important aspects of caregivers' health needs; mental health, emotional support and social relationships, healthy diet and exercise, and personal time. While these themes were similar for offspring and partner caregivers, the specific needs and barriers within these areas were different. A prominent barrier for partner caregivers was that they had difficulty in acknowledging their needs. Despite this, partner caregivers demonstrated unmet emotional support needs, as they no longer had emotional support from their partner with dementia. They also had an unmet need for time away from the care-giving role, yet they were reluctant to leave the person with dementia. Offspring caregivers' unmet health needs were easily identified and were focused on their unmet mental health needs and feeling socially isolated. These unmet mental health and social support needs were related to their unmet health needs in other areas such as exercise, diet and having time to themselves. Conclusion Caregivers have significant unmet needs and these are often complex, multidimensional, and they often differ between partner and offspring caregivers. Gaining a more detailed understanding of the needs and barriers that are particularly relevant to either partner or offspring caregivers will assist in the development of interventions that are tailored to the unique needs of caregivers.
Objective To estimate how labor force participation is affected when adult children provide informal care to their parents. Data Source Survey of Health, Ageing and Retirement in Europe from 2004 to 2013. Study Design To offset the problem of endogeneity, we exploit the availability of other potential caregivers within the family as predictors of the probability to provide care for a dependent parent. Contrary to most previous studies, the dataset covers the whole working‐age population in the majority of European countries. Individuals explicitly had to opt for or against the provision of care to their care‐dependent parents, which allows us to more precisely estimate the effect of caregiving on labor force participation. Principal Findings Results reveal a negative causal effect that indicates that informal care provision reduces labor force participation by 14.0 percentage points (95 percent CI: −0.307, 0.026). Point estimates suggest that the effect is larger for men; however, this gender difference is not significantly different from zero at conventional levels. Conclusions Results apply to individuals whose consideration in long‐term care policy is highly relevant, that is, children whose willingness to provide informal care to their parents is altered by available alternatives of family caregivers.
In the global south where care services are sparse and familial care remains practically and socially important, end of life care often occurs within families. Furthermore, in health care related policy development, care is often assumed to be ensured by ‘traditional’ norms of extended family relationships. In this context, the demands of providing care may require care providers to relocate, as well as reorganize their everyday responsibilities. This article contributes to geographies of care by offering an examination of the mobility constraints experienced by married and externally-resident daughters seeking to provide end of life care to a parent in northern Ghana. Drawing on ethnographic research, I examine how particular familial relationships are embedded with socially constructed labour obligations, leading to conflicting responsibilities at a parent’s end of life. I then consider how a woman as a daughter works to overcome these constraints to provide end of life care. I conclude that understanding the mobility of care providers can contribute to avoiding potentially damaging assumptions of ‘traditional’ norms of care and is an important consideration towards understanding the geographies of care in the rural global south.
Background: Pain management is a challenging task for family caregivers in home hospice care. However, there are limited studies that examine the challenges regarding pain management in hospice care from family caregivers’ perspectives. Objectives: To identify the challenges related to pain management faced by family caregivers in hospice care and to examine the validity of an existing framework that outlines pain management challenges for hospice family caregivers. Design: We conducted a theory-driven, deductive content analysis of secondary data obtained from hospice family caregivers’ interviews from a randomized clinical trial. Setting/Participants: We included baseline interviews of 15 hospice caregivers of patients from hospice agencies in the States of Washington. The majority of the participants were white and female caregivers. They were spouse/partner or adult child living with the patient. Results: The study identified 5 out of the 6 major themes in the original framework and confirmed that hospice family caregivers face a variety of challenges: caregiver-centric issues, caregiver’s medication skills and knowledge, communication and teamwork, organizational skill, and patient-centric issues. A couple of the subthemes in the original framework were not present in our findings. We also expanded the original framework by adding 1 subtheme and revised 2 definitions in the original framework. Conclusion: The study provided an investigation on hospice family caregivers’ difficulties in pain management. The results can inform health-care providers and researchers of family caregivers’ challenges and provide insights for future designs of educational tools targeting pain management strategies, so that family caregivers can perform pain management effectively at home.
BACKGROUND: Parents often become the caregivers for their adult children with serious mental illness (SMI) due to the chronic and debilitating course of the illness and shortages in funding for community mental health services and residential placements. OBJECTIVE: To examine parents' management styles when caring for adult children with SMI and parents' perspectives on what type of community-based mental health interventions would support and/or enhance overall family functioning. DESIGN: A qualitative descriptive study using semistructured interviews with parents caring for adult children with SMI. The study was undergirded by Knafl and Deatrick's Family Management Style Framework. RESULTS: Four major themes emerged from the data describing prolonged and difficult phases that parents and the family undergo in caring for an adult child with SMI. CONCLUSIONS: Successful management of these phases must include increasing access to mental health information, mental health screening, early interventions, and violence prevention for adult children and their families.
Aims and objectives To explore and describe how young adults between 18-25 years of age experienced growing up with a parent with multiple sclerosis and how these experiences continue to influence their daily lives. Background Chronic parental illness is occurring in about 10% of families worldwide, but little is known about how the children experience growing up with a parent with multiple sclerosis during their childhood and into young adulthood. Design We chose a qualitative design using a phenomenological approach based on Giorgi. Methods Exploratory and open-ended interviews with 14 young adults were conducted. Results The essence of the phenomenon of having a parent with multiple sclerosis was synthesized into 'Striving for balance between caring and restraint' from two themes 'caring' and 'restraint' and eight subthemes. Participants' experiences of caring for parents with multiple sclerosis continued influencing their other close relationships, in which they tended to assume responsibility while concealing some of their feelings and desires. Most participants showed restraint among parents with and without multiple sclerosis, friends and partners. Conclusion It seems that one of the greatest challenges of having a parent with multiple sclerosis is achieving a balance between caring for others and asserting one's own desires. Relevance to clinical practice Healthcare professionals can support the family by encouraging family members to participate in consultations and to assist the parents in providing information about multiple sclerosis and its symptoms to the children. Parents might need assistance in applying for help with domestic chores or referrals to support groups for their children or other family members.
Older adults cared for at home by family members at the end of life are at risk for care transitions to residential and institutional care settings. These transitions are emotionally distressing and fraught with suffering for both families and the older adult. A theoretical model titled "The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life" was developed using the method of grounded theory. When a dying parent cannot remain at home to die, family members experience guilt throughout the transition process. Findings indicated that guilt surrounding transfers escalated during the initial stages of the transfer but was mitigated by achieving what family members deemed as a "good" death when relatives were receiving hospice care. The findings of this interpretative approach provide new insights into family-focused perspectives in care transfers of the dying.
Background: One caregiver relationship that has been neglected in caregiver depression research is the daughter-in-law. Compared with Western countries, in which those who are closer in familial relationships such as the spouse or child usually take care of the patient, in many Asian countries, the daughter-in-law often assumes the caretaker role. However, not much research has been done on how this relationship may result in different caregiver outcomes. We sought to identify whether the association between patient characteristics and caregiver depressive symptoms differs according to the familial relationship between caregiver and patient. Materials and Methods: Ninety-five daughter (n=47) and daughter-in-law (n=48) caregivers of dementia patients were asked to report their own depressive symptoms and patient behavioral symptoms. Patients' cognitive abilities, daily activities, and global dementia ratings were obtained. Hierarchical linear regression was employed to determine predictors of depressive symptoms. Results: Daughters-in-law had marginally higher depressive scores. After adjusting for caregiver and patient characteristics, in both groups, greater dependency in activities of daily living and more severe and frequent behavioral symptoms predicted higher caregiver depressive scores. However, greater severity and frequency of behavioral symptoms predicted depression to a greater degree in daughters compared with daughters-in-law. Conclusions: Although behavioral symptoms predicted depression in both caregiver groups, the association was much stronger for daughters. This suggests that the emotional relationship between the daughter and patient exacerbates the negative effect of behavioral symptoms on caregiver depression. The familial relationship between the caregiver and dementia patient should be considered in managing caregiver stress.
Background Having a child with intellectual disability impacts all family members, with both parents and siblings having to adjust. Negative impact on the typically developing sibling, specifically, has been shown to vary based on caregiving responsibilities and mothers' stress level. Method This study gathered information from 238 Latina and Anglo mothers of young adults with intellectual disability to explore sibling negative impact related to maternal stress, positive feelings about parenting, sibling diagnostic category, and cultural group. Results Mothers experiencing more stress reported higher levels of sibling impact mothers with more positive feelings about parenting reported lower levels of negative impact, with Latina mothers reporting higher levels of stress and positive feelings about parenting. Anglo mothers, however, were less likely to designate a sibling as a future caregiver. Conclusions These findings suggest culture and diagnostic classification should be given more attention relative to their impact on typically developing siblings.
There are growing numbers of older parents providing ongoing care for adults with disabilities. A parent's aging calls for a redefinition of parental care practices and roles in light of his or her own changing needs. The current study aims to highlight the ways in which aging parents perceive and construct their parental role to adult children with disabilities at this point in their lives. An interpretive phenomenological analysis perspective was used. Data collection was performed through in-depth, semistructured interviews with 20 aging parents of children with developmental disabilities, followed by a content analysis. Four patterns of parental identity emerged: "Being happy is his responsibility I did my part," embracing aging needs "I can do part-time worrying," a gradual letting go of parental roles "I'm worn out, but I keep going. What choice do I have?" bearing the brunt "I'm an old woman changing diapers," full-time parents. The findings enable a deeper understanding of the various ways in which parents cope with aging alongside caring for an adult child with disability. Hence, this study can serve as a framework for developing tailored and differential intervention methods for these families. As the world's people experience longer life expectancy, of both individuals with disabilities and their parents, nurses' education and practice should be challenged by the double sensitivities of elder's caregiving and address the unique needs of this unique population.
Research suggests that adult children are less likely to provide care to community-dwelling parents when beds in residential care settings are more widely available. The underlying mechanisms are not well understood. Drawing on data from the Survey of Health, Ageing and Retirement in Europe (SHARE) on 1,214 impaired parent–child dyads from 12 countries, we find that adult children are less likely to provide care in countries where beds in residential care settings are more widely available because (a) parents’ care needs are less severe in such countries (out-selection hypothesis) and (b) adult children and impaired parents are less likely to share a household in such countries (in-selection hypothesis). Finally (c), after taking these two factors into account, adult children remain less likely to provide care in countries where beds in residential care settings are more widely available (diffusion of responsibility hypothesis). Plausibly, being able to rely on residential care undermines adult children's sense of urgency to step in and provide care to their parents.
Background: Caregivers are responsible for the home care of family members with mental-health disorders often experience changes in their life that can generate stress and burden. The aim of this study was to identify factors associated with the burden of caregivers of family members with mental disorders. Methods: This cross-sectional study was conducted with a non-probability sample of family caregivers, whose patients attended a community services program, the Psychosocial Care Centers, in three cities in the southwest region of Goiás State, Central Brazil. Data collection took place from June 2014 to June 2015. The participants were 281 caregivers who completed a sociodemographic questionnaire and the Zarit Burden Interview (ZBI). Bivariate analyses (t test, analysis of variance, and Pearson correlation) were performed, and variables with values of p < 0.10 and gender were included in a multiple-linear regression model. Values of p < 0.05 were considered significant. Results: The caregivers were mostly female and parents of the patients, were married, with low education, and of low income. The mean ZBI score was 27.66. The factors independently associated with caregivers’ burden were depression, being over 60 years of age, receiving no help with caregiving, recent patient crisis, contact days, and having other family members needing care. Conclusions: This study identified factors that deserve the attention of community services and can guide programs, such as family psycho-education groups, which may help to minimize or prevent the effects of burden on family caregivers responsible for patients’ home care.
This article describes an examination of the sociodemographic characteristics of adult children, particularly Baby Boomer caregivers, who provide financial care to older parents with dementia. The sample including 1,011adult children dementia caregivers aged 50 to 64 years is selected from a nationally representative sample in the 2010 Health and Retirement Study. Exact logistic regression revealed that race, provision of financial assistance to caregiver children, and the number of their children are significantly associated with financial caregiving of parents. Non-White caregivers are more likely to provide financial care to their parents or parents-in-law with dementia; those who have more children and provide financial assistance to their children are less likely to provide financial care to parents with dementia. The current findings present valuable new information on the sociodemographic characteristics of adult children who provide financial assistance to parents with dementia and inform research, programs, and services on dementia caregiving.
Using the Japanese Study of Aging and Retirement, Japan’s first globally comparable panel survey of the elderly, we estimate the effect on female employment in Japan due to the provision of informal parental care. We observe that informal parental care has little impact on female employment, after controlling for endogeneity of informal care or individual unobserved time-invariant heterogeneity. This finding is consistent with those observed in Europe and the US, underscoring a limited association between care and work in Japan, which is facing ageing at the fastest pace among advanced economies.
Increasing attention is being paid to specific difficulties experienced by bereaved family caregivers (FCs). Limited capacity within health and social care structures results in high intensity of informal caregiving. The focus of recent research is the identification of specific predictors of adverse FC outcomes, in order to identify those FCs who will benefit most from intervention and support. Research is challenged by multiple influencing and confounding variables. This study aimed to evaluate factors of care associated with higher grief intensity in bereaved adult–child (AC‐FCs) and spousal FCs (S‐FCs). Data from the Qualycare study, a mortality follow‐back study of bereaved FCs of patients who died of cancer, was analyzed. Four hundred eighty‐four patient–FC dyads were included: 246 AC‐FCs and 238 S‐FCs. S‐FCs received more formal (SPC) (p = 0.026), and AC‐FCs more informal (p < 0.001), support. AC‐FCs were more likely to continue to work while caregiving (p < 0.001). Patients with AC‐FCs were more likely to spend time in and die in a nursing home (p < 0.001). Higher grief intensity was associated with higher caregiving intensity (p < 0.001), as well as other factors. AC‐FCs whose relative died in NH experienced significantly lower grief intensity (p < 0.001). Intensity of caregiving predicted 11.6% of variance in grief intensity for AC‐FCs compared to 0.5% for S‐FCs. The ‘relief model’ of bereavement is relevant for AC‐FCs. The support needs of AC‐FCs and S‐FCs differ. AC‐FCs should be targeted for practical supports and interventions, in order to support home‐death, if desired by patient and FC, and optimize bereavement outcomes.
There is a potential free‐rider problem when several siblings consider future provision of care for their elderly parents. Siblings can commit to not providing long‐term support by living far away. If location decisions are made by birth order, older siblings may enjoy a first‐mover advantage. We study siblings' location decisions relative to their parents by estimating a sequential participation game for U.S. data. We find (i) limited strategic behavior, that is, in two‐child families, more than 92% of children have a dominant strategy, and (ii) a nonnegligible public good problem, that is, in families with multiple children, 18.3% more parents would have had at least one child living nearby had location decisions been made cooperatively.
We use a reform in the federal funding of care for the elderly in Norway to examine the effects of formal care expansion on the labor supply decisions of middle-aged children. We find a consistent and significant negative impact of formal care expansion on insured work absences for the adult daughters of single elderly parents. This effect is particularly strong for daughters with no siblings, who are also more likely to exceed earnings thresholds after the reform. We find no impacts of the reform on daughters’ mobility or parental health, and no effects on adult sons.
Introduction: Family is considered the main support of the elderly in a situation of dependency. Caregiving often results in overloading, leading to diverse problems. Aim: To evaluate the self-perception of the family caregiver’s overload and the strategies used to provide informal care to the dependent elderly considering their level of dependence. Method: The sample consisted of 21 children, 16 spouses, and nine other relatives of elderly dependents who responded to the Caregiver’s Overload Scale (Sequeira, 2007), the Portuguese version of Caregivers’ Assessment Management Index (CAMI, Nolan, Keady, & Grant, 1995) and the Barthel Index (Mahoney & Barthel, 1965). Results: The Barthel Index showed 34.8% of the elderly as severely dependent and 37.0% as totally dependent. The care most provided respected to medication, hygiene, food, and monitoring. Above 56.5% of the caregivers had an intense overload, both at the objective (impact of care and interpersonal relationship) and subjective (F3-Expectations regarding care and F4-Perceived self-efficacy) levels. The main reason for maintaining caregivers was family/personal obligation (95.7%). Caregivers reasonably assessed the effectiveness of their strategies in dealing with their dependent elderly (CAMI M = 101.0, SD = 15.0). There was a negative relationship between the perception of the caregiver’s overload and the age and health status of the elderly, as well as between the number of strategies used by the caregiver to overcome difficulties and the self-perception of the overload. Conclusion: The multiplicity of daily tasks performed in support of a family member in a situation of severe dependence translates into situations of intense overload, negatively impacting on care, interpersonal relationship, expectations regarding caring, and perception of self-efficacy of care.
The purpose of this paper is to test alternative models of long-term caring motives. We consider three main motives: pure altruism, exchange and family norm. Our database is the second wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) which allows linking almost perfectly and with complete information children and their parents’ characteristics. Comparing the empirical results to the theoretical models developed, it appears that, depending on the regions analyzed, long-term caring is driven by moderate altruism or by family norm, while Alessie et al. (De Economist 162(2):193–213, 2014), also using SHARE data, stress the importance of exchange motive in intergenerational transfers.
This paper examines gender differences in the long-term care of older parents in India by studying the expected provision of care by married sons and daughters. Gender differences in long-term care are important, as the sociocultural environment of India shapes the role of married children. While married sons are expected to provide long-term care for their biological parents, married daughters have limited scope to do so, a tendency that was revealed through our data from Osaka University’s ‘Preference Parameters in India, 2011.’ Other family members are also expected to play a significant role in parental care, while neither gender expects their parents to rely on professional long-term care. This paper contributes to the scarce empirical evidence on long-term care for older parents by married children, as opposed to previous research that has focused on the division of caregiving activities between sons and daughters in general.
Reproducing care demands and dependency, enacting and affirming values“flying blind” in how and how long to sustain caring This study aimed to understand how adult children sustain caring for persons with dementia (PwDs) within their family and formal care contexts in Canada. Half-day focus groups were conducted with adult daughters and adult sons in Toronto, Canada. Using constructivist grounded theory, we examined both substantive concepts and group dynamics. Sustaining care was interpreted as an indefinite process with three intertwined themes: reproducing care demands and dependency, enacting and affirming values , and “flying blind” in how and how long to sustain caring (i.e., responding to immediate needs with limited foresight). Family values and relationships, mistrust toward the institutional and home care systems, and obscured care foresight influenced care decisions and challenged participants in balancing their parents’ needs with their own. Positive and negative aspects of care were found to influence one another. The implications of these findings for research and policy are discussed.
Providing care to a disabled parent can be a psychologically strenuous activity with potential negative consequences for the caregiver's mental health. At the same time, experiencing the declining health of a parent – often the very reason for the parent's care needs – can impact the adult child's mental health negatively. Because both events are usually observed simultaneously, disentangling the “caregiver effect” and the “family effect” remains a challenge. Using longitudinal data of the elderly population in Europe and an instrumental variable approach to address possible endogeneity concerns, this paper separately estimates the effect of caregiving and the decline of a parent's health on adult children's mental health. While I find negative but small caregiver and family effects for the “average” caregiver, the caregiver effect is multiplied for daughters if care provision is triggered by higher parental care needs.
Purpose: The life course perspective suggests that serious physical or mental health conditions that limit the daily activities of any one family member are likely to be consequential for other family members as well. In this article, we explored whether adult children’s serious health conditions affected the flow of expressive and instrumental support between mothers and both the offspring with health conditions and other offspring in the family. Design and Methods: We used data collected from 369 older mothers (M = 78 years) regarding 1,338 of their adult children (M = 49 years), as part of the Within-Family Differences Study-II. Results: Adult children with serious health conditions were more likely than their siblings to be given support by their mothers. The presence of adult children with health issues did not reduce mothers’ provision of expressive or instrumental support to their children without health conditions. However, in families in which a higher proportion of children had serious health conditions, mothers received expressive support from a greater proportion of their healthy adult children than in families with a smaller proportion of adult children with health conditions. Implications: These findings contribute to a growing body of research demonstrating the ways in which conditions in adult children’s lives affect their mothers.
The need to provide care for older people can put a strain on their adult children, potentially interfering with their work attendance. We tested the hypothesis that public care for older people (nursing homes or home care services) would moderate the association between having an older parent in need of care and reduced work attendance among the adult children. The analysis used data from a survey of Norwegian employees aged 45–65 (N = 529). Institutional care for older people in need of care (i.e. nursing homes) was associated with improved work attendance among their children—their daughters in particular. Data also indicated a moderating effect: the link between the parents’ reduced health and reduced work attendance among the children was weaker if the parent lived in a nursing home. However, the results were very different for home-based care: data indicated no positive effects on adult children’s work attendance when parents received non-institutionalised care of this kind. Overall, the results suggest that extending public care service to older people can improve their children’s ability to combine work with care for parents. However, this effect seems to require the high level of care commonly provided by nursing homes. Thus, the current trend towards de-institutionalising care in Europe (and Norway in particular) might hamper work attendance among care-giving adult children, women in particular. Home care services to older people probably need to be extended if they are intended as a real alternative to institutional care.
Shortly after I received my first R01 grant to study the health effects of caregiving, my sister and I became caregivers to our father. For the next 13 years, we helped him with activities of daily living (ADLs), accompanied him to doctors’ appointments, arranged for home health care, and finally for home hospice. At first, I was able to connect our assistance with ADLs, frustration with coordinating his care, and our psychological stress with my epidemiologic studies. My familiarity with the language of caregiving and long-term care helped us to navigate the medical and home care systems, and to be advocates for my father. However, as my father’s health declined, I felt an increasing disconnect between my research and my experience: communicating with physicians and other care providers, responding to crises and conversations with my sister about placing our father in a nursing home were greater sources of stress than my father’s dementia. These discrepancies made me realize that I could help caregivers more by helping them to negotiate these challenges than through performing quantitative research. So I enrolled in a counseling psychology program. My manuscript will chronicle the ways that caregiving changed me how my professional work did and did not help me as a caregiver how the developmental and family theories that I am learning in my psychology classes have expanded my understanding of stressors facing adult child caregivers, and how this entire experience ties into generativity and Third Chapter careers that build on midlife experiences.
This paper focuses on the evaluation of dementia case management in the Netherlands, as well as factors associated with positive evaluations of informal caregivers. A survey was completed by 554 informal carers. The majority of the informal carers were older (69% was 55+), and female (73%), and often concerned the partner or adult children of the person with dementia. Eighty percent indicated that the contact with the case manager facilitated their role as informal carer, while 95% or more stated that the case manager showed sufficient understanding, allowed enough space to decide together on how to approach problems in the care, took time to listen to their story, gave sufficient attention to and showed interest in their relative, took their schedule into account and/or kept appointments. Contrary to the expectations, multilevel analyses did not show association between informal caregivers’ care burden and the evaluation of case management. Neither were the period living with dementia and the number of personal contacts with the case manager associated with the evaluations of informal caregivers. However, being the partner of the patient was significantly related (p < 0.05) to a positive overall evaluation by informal carers. These results suggest that sufficient case management resources should be offered and targeted especially towards partners of people with dementia.
Aim: Despite efforts to revise the traditional long‐term care (LTC) model, informal caregivers continue to provide a substantial amount of support to older adults as front‐line care providers. The present study aimed to understand the effect of informal caregiving on caregivers’ well‐being in Singapore with respect to different types of patient–caregiver relationships. Second, this study examined the association between formal LTC service use and caregivers’ well‐being. Methods: Two waves of data for 781 dyads of patients with LTC needs and their caregivers from a longitudinal study were analyzed. Multilevel regression models were used to examine the association between caregivers’ well‐being (self‐rated general health, stress level and quality of life) and LTC service use among different patient–caregiver relationships. Results: Spousal caregivers reported significantly lower quality of life compared with adult children caregivers. Non‐immediate family caregivers showed better overall well‐being compared with spouse and adult children caregivers. Caregivers of patients referred to nursing homes reported higher levels of stress and poorer self‐rated general health compared with caregivers of patients referred to community‐based services. Spouse and non‐immediate family caregivers of patients who utilized nursing home or home‐based services presented poorer self‐rated general health than caregivers of the patients who did not use any formal services. Conclusions: Developing a better understanding of the associations between well‐being and formal LTC service use for different types of patient–caregiver relationships is critical for policy makers and healthcare providers who aim to create holistic systems of care.
This paper explores the definitions of social contract on elderly caregiving among a group of seven Chilean aging experts. The data show that for Chileans, family remains a strong institution that should provide care of its members, with daughters or daughters-in-law being the preferred person to provide care. Also, age segregation, along with the gradual privatization of services such as health care and the pension system, promotes individuality: this can become a problem for future generations because they are no longer concerned with helping others.
AIMS AND OBJECTIVES: To explore the resources that patients diagnosed with type 2 diabetes drew upon to manage the disease in their daily lives. BACKGROUND: Type 2 diabetes is a disease affecting Australian adults at a rate described as an 'epidemic'. Treatment usually focuses on patient self-management, which may require daily blood sugar monitoring, oral medications or injectable therapies, and regulating diet and exercise. Health research studies of patient self-management, including those involving type 2 diabetes, have focused largely on individual-centred definitions, though a number of studies, in particular qualitative studies, have indicated the positive role of social relationships and informal social networks. DESIGN: Exploratory, qualitative. METHODS: The project focused on 26 patients attending a diabetes centre for clinical consultations with centre staff including doctors, diabetes educators, podiatrists and dietitians. The consultations were observed and audio recorded, followed by semi-structured, audio-recorded interviews with the patients and separate interviews with the consulting professional staff. RESULTS: Overwhelmingly the patients drew on informal social networks of support to manage the disease. Spouses were significant, sometimes presenting with the patient as a 'team' approach to managing the disease. Sons and daughters also played a significant support role, especially interpreting during consultations and explaining health information. In some cases neighbours and also local community organisations provided informal support. Only two patients claimed not to use informal social support. CONCLUSIONS: Informal social support in patients' self-management of type 2 diabetes was found to be an important factor to be considered by clinicians. The study suggested the need for a more deliberate or pro-active policy to involve patients' family and other informal social networks in treatment programs. RELEVANCE TO CLINICAL PRACTICE: Clinicians may need document and incorporate informal social support in the development and implementation of patient management plans.
Aims and objectives: To explore parents’ involvement in the informal and professional care of their young adult child with mental illness. A further aim was to examine concepts in the caring theory of ‘Involvement in the light–Involvement in the dark’ in the context of mental health care.
Background: Mental illness has increased among young people in high‐income countries, and suicide is now the leading cause of death for this group. Because of their disease, these young people may have difficulty in carrying out daily, taken‐for‐granted, tasks. Consequently, they often become dependent on their parents, and their parents shoulder a considerable responsibility.
Design: A secondary descriptive design with a deductive content analysis was used.
Methods: Ten parents who have a son or daughter with long‐term mental illness (aged 18–25 years) were interviewed. The deductive analysis was based on the caring theory of ‘Involvement in the light–Involvement in the dark’.
Results: The results are described using the following concepts in the theory: ‘Knowing’, ‘Doing’, ‘Being’ and ‘Attitude of the health professionals’. The result are to a great extent consistent with the ‘Involvement in the dark’ metaphor, which describes an isolated involvement in which the parents were not informed, seen or acknowledged by the health professionals. Continuous support by professionals with a positive attitude was described as being of decisive importance for meaningful involvement. The theory's transferability is strengthened to the mental health care context.
Conclusions: Parents have a considerable need for knowledge that can enable them to choose how they should act (be) and what they should do, in order to help and support their child.
Relevance to clinical practice: Since the patient, the family members and the professionals are mutually dependent, it is important to make use of each other’s knowledge in a partnership to achieve a common caring strategy.
Objectives: To identify the distinct quality of life (QOL) trajectories among stroke survivors, and to evaluate the associations with their caregivers' burden, anxiety, and depression.; Design: This was a longitudinal dyadic study.; Settings: Stroke survivors and their informal caregivers were enrolled upon discharge from several rehabilitation hospitals, and they were followed during this multisite longitudinal study.; Participants: The stroke survivors (N=405, mean age=70.7y) included older adult men (52.0%), most of whom (80.9%) had had ischemic strokes. The caregivers (n=244, mean age=52.7y) included mostly women (65.2%), most of whom were the survivors' children (50.0%) or spouses (36.1%).; Interventions: Not applicable.; Main Outcome Measures: Latent growth mixture modeling was used to identify the distinct QOL trajectories among the stroke survivors over the course of 12 months of recovery. The longitudinal associations between the stroke survivor QOL trajectories and the caregivers' burden, anxiety, and depression were evaluated. A multinomial regression was then used to identify the predictors of the various survivor QOL trajectories.; Results: Three distinct survivor QOL trajectories were identified: high and slightly improving QOL, moderate and slightly worsening QOL, and markedly improving QOL. The caregivers' burden, anxiety, and depression mirrored the survivors' QOL trajectories. In the multinomial models, an older survivor age, hemorrhagic stroke, lower education, and coexisting chronic obstructive pulmonary disease or thyroid disease were significantly associated with a moderate and slightly worsening QOL trajectory. Women and blindness were associated with a markedly improving QOL survivor trajectory.; Conclusions: A survivor's QOL trajectory after a stroke was associated with their caregiver's burden, anxiety, and depression. Those survivors belonging to the moderate and slightly worsening QOL trajectory and their caregivers, in particular, need special care, because they are at risk for the worst outcomes.
Background: Many studies have separately addressed the associations of informal caregiving with coresidence, a caregiver's work status, and health conditions, but not jointly. We examined how their parents' need for care affects middle-aged women's lifestyle and psychological distress, considering the potential simultaneity of decisions on caregiving and living adjustments.; Methods: We used 22,305 observations of 7037 female participants (aged 54-67 years) from a nationwide longitudinal survey in Japan conducted during 2009 and 2013. We considered the occurrence of parents' need for care (OPNC) as an external event and estimated regression models to explain how it affected the probabilities of the participants becoming caregivers, coresiding with parents, and working outside the home. We further conducted the mediation analysis to examine how the impact of OPNC on participants' psychological distress measured by Kessler 6 (K6) scores was mediated by caregiving and living adjustments.; Results: OPNC made 30.9% and 30.3% of middle-aged women begin informal caregiving for parents and parents-in-law, respectively, whereas the impact on residential arrangement with parents or work status was non-significant or rather limited. OPNC raised middle-aged women' K6 scores (range: 0-24) by 0.368 (SE: 0.061) and 0.465 (SE: 0.073) for parents and parents-in-law, respectively, and informal caregiving mediated those impacts by 37.7% (95% CI: 15.6-68.2%) and 44.0% (95% CI: 22.2-75.4%), respectively. By contrast, the mediating effect of residential arrangement with parents or work status was non-significant.; Conclusions: Results underscore the fact that OPNC tends to promote middle-aged women to begin informal caregiving and worsen their psychological distress.
An increasing number of people combine paid work with the provision of informal care for a loved one. This combination of work and care may cause difficulties, necessitating adaptations at work, i.e. work arrangements. The present study explores what types of work arrangements are used by working caregivers, and which caregiver, care and work characteristics are associated with the use of these work arrangements. Within the Lifelines Informal Care Add-on Study (Lifelines ICAS), data on 965 Dutch informal caregivers in the North of the Netherlands were collected between May 2013 and July 2014 (response rate 48%), and data on 333 working adult-child caregivers (aged 26-68 years, 82% female) were used in this study. A small majority (56%) of the working caregivers used one or more work arrangement(s): taking time off (41%), individual agreements with supervisor (30%), formal care leave arrangement (13%), and reduction in paid work hours (6%). Logistic regression analyses showed that long working hours (OR 1.06, 95% CI 1.01-1.08), and the experience of more health problems (OR 2.54, 95% CI 1.56-4.05) or a disrupted schedule due to caregiving (OR 2.50, 95% CI 1.66-3.78) increased the chance to have used one or more work arrangements. Lower educated working caregivers were less likely to have used a formal care leave arrangement (tertiary vs. primary education OR 2.75, 95% CI 1.13-6.67; tertiary vs. secondary education OR 1.27, 95% CI 1.27-5.09). Policy makers should inform working caregivers about the availability of the different work arrangements, with specific attention for low educated working caregivers. Employers need to consider a more caregiver-friendly policy, as almost half of the working adult-child caregivers did not use any work arrangement.
Background and Objectives: Many adults with autism spectrum disorders require lifelong reliance on caregiver support. As these caregivers age and experience health challenges, social support can be critical. This study seeks to understand if caregiver health moderates the relationship between informal social support and caregiver burden.; Research Design and Methods: A total of 320 parents (age 50+ years) of adult children diagnosed with ASD were recruited from autism organizations and support groups and completed a web-based survey. Separate moderation analyses were used to determine if caregiver health was moderating the relationship between informal social support and composite caregiver burden, as well as the separate domains of developmental, time dependence, emotional burden, and impact of caregiving on finances. For each analysis, perceptions of available informal social support were the independent variable, composite and domains of caregiver burden were dependent variables, and parents' self-reported general health was the moderating variable.; Results: Caregiver health had a statistically significant moderating effect when predicting the relationships between informal social support and composite caregiver burden, as well as time dependence burden and impact of caregiving on finances.; Discussion and Implications: Increased attention should be focused on supporting the current and future needs of both aging caregivers and their adult children with ASD. Future research on the dynamics of social support, health, and burden is also urgently needed to address the growing number of aging caregivers of adults diagnosed with ASD.
Objective: This study investigates whether the health effects of informal caregiving for aging parents vary by employment status in the United States. Two opposing hypotheses are tested: dual role strain and role enhancement.; Method: Using national longitudinal data from the U.S. Health and Retirement Study, multivariate regression models predicted self-rated health and mental health among older adult children caregiving for their parents (2009-2012) and noncaregivers.; Results: A statistically significant interaction was found between caregiving duration and employment, indicating that employed caregivers had significantly worse health than retired caregivers. Caregiving duration also predicted significantly higher levels of depressive symptoms.; Discussion: Our results support the dual role strain hypothesis and suggest that caregiving for a parent up to 4 years is enough to predict significantly worse health among older adult Baby Boomers, especially those in the labor force. The broader implications for public health and workplace policies are discussed.
Dementia is one of the main causes of disability later in life. Interventions in support of patients with dementia aim at granting the highest level of independence in activities of daily living and at delivering the required facilities; formal and informal caregivers represent the interface between patients and health services. The aims of our study were to assess caregivers' perceived needs and to relate them to their own socio-cultural features and to patients' clinical characteristics. During three consecutive months, 50 caregivers of patients with dementia were interviewed about their needs in the assistance of subjects with dementia by means of three structured questionnaires (Caregiver Needs Assessment [CNA], Zarit Burden Inventory [ZBI], Neuropsychiatric Inventory-Questionnaire [NPI-Q]) and of two open-ended questions. Higher scores of CNA (suggestive of more needs) were associated with a major burden in caregiving and were related to a more severe behavioral and psychological profile of patients with dementia. ZBI was highly correlated with NPI distress score. Among caregivers, the children of patients reported more needs, particularly about information on disease and how to cope with it. CNA emerged as a complete and reliable instrument, with need for safety being the only item missing from the questionnaire and identified by means of the open-ended questions. Our results showed how the use of simple and brief instruments can increase the communication between health operators and caregivers and could thus improve the quality of formal and informal assistance.
Background: Recent heart failure (HF) patient and informal caregiver (eg, dyadic) studies have either examined self-care from a qualitative or quantitative perspective. To date, the 2 types of data have not been integrated.; Objective: The aim of this study was to understand HF self-care within the context of dyadic engagement.; Methods: This was a cross-sectional, mixed methods (quantitative/qualitative) study. Heart failure self-care was measured with the Self-care of Heart Failure Index (v.6) dichotomized to adequate (≥70) or inadequate (<69). Dyadic symptom management type was assessed with the Dyadic Symptom Management Type scale. Interviews regarding self-care were conducted with both dyad members present. Content analytic techniques were used. Data were integrated using an information matrix and triangulated using Creswell and Plano Clark's methods.; Results: Of the 27 dyads, HF participants were 56% men, with a mean age of 77 years. Caregivers were 74% women, with a mean age of 66 years, representing spouses (n = 14) and adult children (n = 7). Quantitatively, few dyads scored as adequate (≥70) in self-care; the qualitative data described the impact of adequacy on the dyads' behavior. Dyads who scored higher, individually or both, on self-care self-efficacy and self-care management were less likely to change from their life course pattern. Either the patient or dyad continued to handle all self-care as they always had, rather than trying new strategies or reaching out for help as the patient's condition deteriorated.; Conclusions: Our data suggest links that should be explored between dyadic adequacy and response to patients' symptoms. Future studies should assess dyadic adequacy longitudinally and examine its relationship to event-free survival and health services cost.
Background: Heart failure (HF) patients need to follow a strict pharmacological and nonpharmacological regimen in order to counteract the burden of the disease, and informal caregivers are an important resource for HF patients in managing and coping with their disease. Few studies have examined the lived experience of these caregivers with a rigorous phenomenological approach, and none have been conducted in Italy.; Aim: To describe the lived experience of the caregivers of HF patients.; Methods: A hermeneutic phenomenological method was used. Caregivers were enrolled in a HF clinic in central Italy. Interviews were analysed using a phenomenological approach. Credibility, dependability, confirmability and transferability were adopted in order to strengthen trustworthiness.; Findings: Thirty HF caregivers (mean age: 53 years) were enrolled. Of these, 63% of the caregivers were female and 80% were patients' spouses or children. Six themes emerged: (1) fear and worry related to the illness; (2) life changes and restrictions; (3) burden due to caregiving; (4) uncertainty about illness management; (5) helping patients to cope with the illness; and (6) love and affection towards the patient.; Conclusion: The findings of our study may help providers to guide interventions for HF caregivers. Providers should be supportive of caregivers and provide them with education in order to reduce their fears and worries about the illness and to handle the course of HF and its symptoms. An empathetic and practical approach with caregivers that considers the patient-caregiver relationship may help caregivers to cope with the changes and restrictions that caregiving brings to their lives and to reduce their burden.
Research into informal caregivers' burden does not distinguish between different stages of impairment. This study explored the determinants of burden from an in-depth perspective in order to identify which determinants apply to which phases of impairment.; Methods: This was a cross-sectional study including frail older persons aged 65 and above. Instruments used were the interRAI Home Care, the Zarit-12 interview and an ad hoc economic questionnaire. A combination of variables from the Stress Process Model and Role Theory and a sub-group analysis enabled refined multivariate logistic analyses.; Results: The study population consisted of 4175 older persons (average age: 81.4 ± 6.8, 67.8% female) and their informal caregivers. About 57% of them perceived burden. Depressive symptoms, behavioral problems, IADL impairment, previous admissions to nursing homes and risk of falls yielded significant odds ratios in relation to informal caregivers' burden for the whole sample. These determinants were taken from the Stress Process Model. When the population was stratified according to impairment, some factors were only significant for the population with severe impairment (behavioral problems OR:2.50; previous admissions to nursing homes OR:2.02) and not for the population with mild or moderate impairment. The informal caregiver being an adult child, which is a determinant from Role Theory, and cohabitation showed significant associations with burden in all strata.; Conclusion: Determinants of informal caregivers' burden varied according to stages of impairment. The results of this study can help professional caregivers gain a greater insight into which informal caregivers are most susceptible to perceive burden.; Abbreviations: NIHDI: National Institute for Health and Disability Insurance; ZBI12: Zarit Burden Interview - 12 items; InterRAI HC: interRAI Home Care instrument; ADL: Activities of Daily Living; ADLH: interRAI Activities of Daily Living Hierarchy scale; IADL: Instrumental Activities of Daily Living; IADLP: InterRAI Instrumental Activities of Daily Living Performance scale; CPS2: InterRAI Cognitive Performance scale 2; DRS: InterRAI Depression Rating scale.;
The aim of this study was to examine the mediating effect of formal and informal social support on the relationship of caregiver burden and quality of life (QOL), using a sample of 320 parents (aged 50 or older) of adult children with autism spectrum disorder (ASD). Multiple linear regression and mediation analyses indicated that caregiver burden had a negative impact on QOL and that informal social support partially mediated the relationship between caregiver burden and parents' QOL. Formal social support did not mediate the relationship between caregiver burden and QOL. The findings underscored the need to support aging parents of adult children with ASD through enhancing their informal social support networks.
Objective: This study examined the moderating effect of domestic helpers on distress of offspring caring for parents with cognitive impairments and with or without behavioural problems.; Method: This secondary analysis of data involved 5086 Hong Kong Chinese adults aged 60 or older applying for public long-term care services from 2010 to 2012. All variables were measured using the mandatory Hong Kong version of the Minimum Data Set-Home Care 2.0.; Results: Regarding taking care of parents with cognitive impairments, 10.7% of offspring primary caregivers were aided by domestic helpers, 55.54% reported distress, and 75.70% lived with their parents. Assistance from domestic helpers reduced offspring caregiver distress if the offspring provided psychological support to parents (ratio of OR = 0.655, p < .05) and were not living with parents (ratio of OR = 1.183, p < .01).; Conclusion: These findings might suggest: a) the positive effects of audience on psychological responses to stress; b) caregiving is usually less stressful for informal caregivers not residing with care recipients. Conversely, having a domestic helper could add to caregiving distress if offspring caregivers live with their parents, most likely because offspring may witness difficulties that domestic helpers face in providing dementia care.
Myanmar is one of the poorest and least healthy countries in Southeast Asia. As elsewhere in the region, population aging is occurring. Yet the government welfare and health systems have done little to address the long-term care (LTC) needs of the increasing number of older persons thus leaving families to cope on their own. Our study, based on the 2012 Myanmar Aging Survey, documents the LTC needs of persons aged 60 and older and how they are met within the context of the family. Nearly 40% of persons in their early 60s and 90% of those 80 and older reported at least one physical difficulty. Spouses and children constitute the mainstay of the financial and instrumental support of elderly including those with LTC needs. Nearly two-thirds of older persons reported receiving assistance with daily living activities. More than three quarters coreside with children, a living arrangement that in turn is strongly associated with receiving regular assistance in daily living. Daughters represent almost half and spouses, primarily wives, one-fourth of primary caregivers. Unmet need for care as well as inadequate care decline almost linearly with increased household wealth. Thus elderly in the poorest households are most likely to experience gaps in LTC. Given mounting concerns regarding health disparities among Myanmar's population, this pattern of inequality clearly needs to be recognized and addressed. This needs attention now rather than later given that reduced family size and increased migration pose additional challenges for family caregiving of frail elderly in the coming decades.
Family caregivers of people with dementia who live within the community often experience stress and poor quality of life due to their care‐giving role. While there are many factors that affect this, one influential factor is the family context. This study focussed on adult child caregivers. It examined the specific ways that family dynamics contribute to adult child caregivers’ distress in the context of caring for a parent with dementia. Semi‐structured interviews were conducted with 17 participants who were adult child primary caregivers for a parent with dementia who was living within the community. Interviews were audiotaped and transcribed verbatim. Transcripts were analysed using thematic analysis. Four themes were identified that represented areas of particular concern and distress for the caregivers: family expectations and caregivers’ lack of choice in adopting the care‐giving role; denial and differential understandings of dementia among family members; differential beliefs and approaches to care‐giving among family members; and communication breakdown between family members. The findings demonstrate several avenues for further research including the development of interventions to support adult child caregivers and address problematic family dynamics within the context of caring for a parent with dementia.
This article offers an examination of aging processes of lifelong caregivers and the possibilities for social exclusion place experienced by parents of adult children with autism spectrum disorder (ASD). This study of parental caregivers (n = 51) sheds light on how enduring caregiving roles can lead to social exclusion in three ways: misunderstanding of ASD and stigma, the complexity of the caregiving roles, and impact on daily routines including challenges with long-term planning for both the adult children and the parental caregivers. Implications for practice to address social exclusion include education and building greater communication ties among family member for family members and advocacy for more and higher quality services including respite care. This article concludes with discussion of the impact of this aging, yet caregiving population and the need for knowledge about aging processes and anticipating aging for these caregivers.
In some cases, parents caring for an adult child with an intellectual and/or developmental disability (IDD) must balance this with caregiving for another family member. This dual responsibility, referred to as 'compound caregiving', may contribute to increased feelings of distress, or change their perceived ability to care for their child. The current study examined how compound caregivers differ from other parents of adults with IDD, and whether compound caregiving is significantly associated with family distress. Data was available for 199 parents aged 38 to 91 years who were seeking adult services for their son or daughter with IDD. Parents completed a mailed questionnaire and telephone interview in which they indicated compound caregiver responsibilities. Parents identified as compound caregivers were then compared to those who were not in terms of family characteristics, as well as parental perceptions of burden and mastery, and family distress as measured by the Revised Caregiver Appraisal Scale and the Brief Family Distress Scale, respectively. Nearly half of the parents reported being compound caregivers. The demographic profile of these parents was no different from that of the other parents but their children were slightly younger. Compound caregiving was significantly associated with parental perceptions of burden and mastery and family distress. Demands outside of caring for an adult child with IDD can negatively influence family functioning and must be included as part of caregiving assessments.
Muscular dystrophy (MD) is a group of progressive muscle weakness diseases. The caregiver burden, increasing as the disease progresses, can be associated with impaired health-related quality of life (HRQOL). The aims of this study were to investigate the HRQOL in caregivers of patients with MD and identify the factors associated with HRQOL. A cross-sectional assessment of caregiver HRQOL was performed with the Short Form-36 and compared with norms. The factors affecting HRQOL were investigated by patient and caregiver characteristics. The Muscular Dystrophy Functional Rating Scale was used to assess the functional status (mobility, basic activities of daily living, arm function, and impairment) of patients. The demographic data and social interaction activities of caregivers were assessed. Caregivers (n = 62) had poor HRQOL. Caregiver HRQOL was associated with the patient’s functional status, especially in the domains of Vitality and Mental Health. Numerous visits by neighbors and close friends of the caregiver family indicated better HRQOL (in the body pain, general health, vitality, role emotion and mental health domains). Caregiver HRQOL was associated with caregiver education level, while patient age, caregiver age, length of caregiving, and family income were not. These findings demonstrate that caregivers have poor HRQOL, and the mental domain of quality of life is associated with the patient’s functional status, social interaction, and caregiver education level. We suggest that rehabilitation programs focus on caregiver HRQOL, promote the patient’s functional status with assistive technology, enhance professional caring techniques, and encourage participation in social groups to improve caregiver HRQOL. [ABSTRACT FROM AUTHOR]
The objective of this qualitative study was to examine how family caregivers of individuals with traumatic brain injury (TBI) describe their quality of life in the context of their caregiving role. Fifty-two caregivers of adults with moderate or severe TBI (n = 31 parents,n = 21 partners/spouses; 77% female; mean age = 57.96 years, range = 34–78 years) were recruited from three data collection sites to participate in focus groups. Thematic content analysis was used to identify two main meta-themes: Caregiver Role Demands and Changes in Person with TBI. Prominent sub-themes indicated that caregivers are (1) overburdened with responsibilities, (2) lack personal time and time for self-care, (3) feel that their life is interrupted or lost, (4) grieve the loss of the person with TBI, and (5) endorse anger, guilt, anxiety, and sadness. Caregivers identified a number of service needs. A number of sub-themes were perceived differently by partner versus parent caregivers. The day-to-day responsibilities of being a caregiver as well as the changes in the person with the TBI present a variety of challenges and sources of distress for caregivers. Although services that address instrumental as well as emotional needs of caregivers may benefit caregivers in general, the service needs of parent and partner caregivers may differ.
This is the eighth paper in the Care Alliance Ireland Discussion Paper series. The papers in this series are not intended to present a definitive account of a particular topic, but to introduce a less-discussed, sensitive or perhaps controversial topic for discussion within the wider community of practitioners, policy makers, researchers and other interested parties. This often takes the form of a literature review (where possible), along with a discussion of views which have been shared with a member of the Care Alliance team either by our member organisations or Family Carers themselves. In some cases this will be a topic which has been raised and shared in the media or social spaces online.
Caring for a “loved one” has long been acknowledged as having real implications for Family Carers’ physical and mental health, along with economic, employment and other impacts. Not all of these impacts, however, are negative. The positive impact of providing care – often significant levels of care – has been well researched.
However, much of this research presupposes that the person being cared for is, indeed, a “loved one”. What happens when the person being cared for isn’t particularly well-loved? How do Family Carers who perhaps do not even like the person they are providing care for deal with the effects of this negative, maybe even toxic, relationship?
This paper focuses on three particular “scenarios” in which Family Carers may need to manage difficult, negative and even toxic relationships while providing care to a family member or friend. These are:
This is the seventh paper in the Care Alliance Ireland Discussion Paper Series. The papers in this series are not intended to present a definitive account of a particular topic, but to introduce a less-discussed, sensitive or perhaps controversial topic for discussion within the wider community of academics, not-for-profit organisations and other interested parties.
The relative unavailability of studies specifically addressing the issue of the impact on intimate relationships of Family Carers is worth noting. The majority of studies that have been undertaken often focus exclusively on the impacts of the disability on the relationship, rather than the impact of caring on the partner/spouse providing care, or on the partner/spouse of a Family Carer. Consequently, this paper is exploratory in nature, and is based on discussions with professionals and Family Carers. Where reference material is available, it has been included; however, material was not available for all topics under discussion in this paper.
The inspiration for the paper has been drawn from conversations with some of our member organisations and a number of Family Carers. These Family Carers have indicated that while this topic may not be of relevance to all Family Carers, it is a topic which those supporting carers must be aware of, and not be afraid to address if necessary.
Family caregivers of people with amyotrophic lateral sclerosis (ALS) live stressful lives in which they spend most of their time caring for their loved ones and managing difficult situations, thereby reducing the time spent in taking care of themselves. This situation may last several years. Previous literature has widely highlighted that this situation reduces caregivers’ quality of life and increases their psychological distress and risk of health problems, but there is a lack of studies that focus on psychological interventions for these situations. This qualitative study examined a pilot experience of two mutual support groups for family caregivers of people with ALS. The aim was to identify caregivers’ needs, the prominent aspects of their experience, and to understand whether and how this intervention strategy might help them. Six partners (four men and two women) and six adult children (five women and one man) participated in the groups, which were conducted in northern Italy. After the support groups finished, participants underwent semi‐structured interviews. The authors conducted a content analysis of the transcripts of the interviews and the 20 group sessions. The thematic areas identified were “caregiving,” “being the son/daughter of a person with ALS,” “being the partner of a person with ALS,” “group experience” and “group evaluation.” The caregiving experience was profoundly different depending on whether the caregiver was a son/daughter or a partner of a patient with ALS. Moreover, comparison with peers and mutual support helped participants to better cope with ALS and its consequences, to improve their care for their relatives and to overcome typical caregiver isolation. These results suggest the usefulness of involving communities in caregiver support in order to create new networks and activate personal and social resources for well‐being.
The present study provides a basic outline of the care and support that family caregivers offer to people affected by neuromuscular diseases.To determine the presence of burden in caregivers of people with neuromuscular diseases who use a wheelchair and to establish whether the presence of burden is influenced by contextual factors, between them, the use of wheelchair.The applied design was cross-sectional and descriptive. The data were collected through a specific questionnaire, the Functional Independence Measure, the Matching Person and Technology form and the Zarit Burden Interview. The caregiver burden was analyzed in relation to different characteristics of the affected people, their wheelchairs, and factors related to the family caregivers themselves. The sample consisted of 41 caregivers, most of them (78.1%) being parents of the affected people.The burden was detected in 71.7% of caregivers. The level of dependence was not related to the presence of burden. Performing care work affected carers' physical health (80.5%), their mood (68.3%), and reduced their leisure time (90.2%). The type of wheelchair and the frequency of its use were not related to the burden.The results suggest that caregivers perceive burden, but its intensity is not related to the seriousness of the disease of the care receiver.
Background: Prevalence of stroke and traditional filial responsibility involve adult children in caregiving to their parent stroke survivors in China. Support resources are insufficient because of the shrinking size of family and the underdeveloped support system. Purpose: The aim of this study was to identify the correlates of perceived social support among adult child caregivers of parent stroke survivors in China. Methods: A cross-sectional correlational design was used in this study. A nonproportional quota sample of 126 adult child caregivers was recruited from Zhejiang Province, China. Data were collected at either the hospital stroke units or the respondents' homes using structured questionnaires of caregiving dyadic demographics and caregiving characteristics, 14-item Activities of Daily Living, 15-item Mutuality Scale, and 12-item Multidimensional Scale of Perceived Social Support. SPSS 17.0 was used for analysis. Results: Caregivers' mutuality, education, full employment or being retired, monthly income, having a co-carer, and having a father as the care receiver were significantly positively associated with caregivers' perceived social support. However, mutuality was not significantly associated with caregivers' perceived social support after the other factors were adjusted. Conclusions/Implications for Practice: Adult child caregivers with higher levels of mutuality, education, or monthly income; who are fully employed or are retired; who have a co-carer; or who are caring for a father perceived more social support. Nursing strategies and social policies need to be directed to enhance caregiver mutuality and support caregiving efforts.
Background: Providing long‐term care to an adult relative with intellectual disability can impact negatively on caregivers’ health and well‐being. Methods: Data were collected via online and postal questionnaires on 110 family carers’ physical and psychological health, family stress and perceived positive gains from caring. Psychological adaptation and carers’ satisfaction with available support were also examined. Results: Study participants reported more health problems than general populations. Higher support needs of care recipients were associated with increased family stress. Carers being female were associated with lower family stress. Older age and better socio‐economic position were associated with better psychological outcomes. Other associations were consistent with psychological adaption and perceived helpfulness of support buffering negative outcomes and facilitating positive gains from caring. Conclusions: Family carers of adults with intellectual disability appear to experience poorer health outcome than population norms. Adaption to the caregiving role may buffer negative outcomes. Further large scale, population‐based, longitudinal research is needed.
The importance of ties between older people and their children has been widely documented as a fundamental component in the provision and receipt of support. While the reference to such support is usually made in a benign manner, it is overly simplistic to assume that support provided by family members will always and necessarily lead to positive outcomes for older people. A person's perception of the adequacy or quality of support is inevitably influenced by his or her expectation of the type, frequency and source of support preferred or required. Most existing British research on the family support of older people has concentrated on those from the white‐British majority with little cross‐group comparisons. This article reports on in‐depth qualitative research with 17 and 21 older people from white‐British and Asian‐Indian backgrounds respectively. It demonstrates how gender, ethnicity, migration history and a range of other factors interweave in complex manners to affect individuals' expectations for support from their adult children. The findings reveal commonalities and differences within and between groups and demonstrate that the association between expectations of support and resultant sense of well‐being is complicated and is often conditional. Stereotypes within and across groups need to be examined given the observation that while familial norms may be played out differently in different cultural contexts, individuals make sense of and rationalise their expectations for support to take into account the dynamics of changing structures and attitudes.
In the present study, we examined 82 parents of adult children with physical disabilities. The parents described the benefits of caregiving, and reported positive feelings about their involvement in caregiving as well as a sense of personal growth as a result of caregiving. When parents perceived caregiving as causing less emotional strain (subjective burden), and when they felt higher levels of closeness with their offspring, and expressed higher levels of hope, they were more likely to indicate that caregiving yielded benefits. In the discussion, we focus on the importance of developing closeness and hope among parents who care for their adult offspring with physical disabilities. The implications of this conclusion for social work intervention are also discussed.
A variation of the stress, appraisal, and coping model was used to examine the negative and positive consequences of providing care to a person diagnosed with Alzheimer's disease (AD). Data were collected from a sample of 113 Hispanic and non-Hispanic adult children who were providing care to impaired parents. Results showed that the Hispanic caregivers were more likely to be experiencing less depression, lower levels of role captivity, and higher amounts of self-acceptance than the non-Hispanic (White) caregivers. While significant differences between Hispanic and non-Hispanic caregivers were present, results from multiple regression analysis demonstrated that feelings of role captivity were stronger predictors of both negative and positive caregiving outcomes than was the caregivers' ethnic status. The findings of this study indicate a continued need for future research with more diverse groups of AD caregivers in order to develop more culturally appropriate interventions.
Background Earlier research shows that nonemployed mothers of children with intellectual disability (ID) have lower wellbeing than employed mothers. This study explored why and to what extent these mothers did not participate in the labour market.
Method An in-depth interview was employed, and 18 working-age and nonemployed mothers in Taiwan who had an adult child with ID were interviewed in their homes between July 2009 and May 2010.
Results The mothers left the labour market at different stages of the family life cycle due to a lack of formal/informal support for the care needs of their young children, and the continuing intensive care needs of their child with ID. Mothers were officially nonemployed; however, to meet their family's financial needs, they were hidden workers in practice.
Conclusions Policies are required that support these hidden female workers, who are also lifelong carers, by offering financial support and affordable social services.
The aim of this meta-synthesis was to explore young carers' accounts of caring for a family member with an illness, difficulty or disability, and to promote a phenomenological understanding of their experiences. A meta-ethnographic method of meta-synthesis was adopted, utilising the process of reciprocal translation to synthesise 11 qualitative studies. The synthesis yielded four main concepts: (1) becoming a caring person; (2) the adult child - the marks of being different; (3) who is a carer? - others' expectations and stigmatisation; and (4) keeping caring as a secret - protecting the caring role and identity. The synthesis of translation generated the higher-order concept of 'integrating caring into an emerging identity'. This concept considers the experiences of young carers as a process of identity formation in the face of persistent stressful experiences from both within and outside the caring role. The clinical implications of these findings are discussed.
The study examined the effect of direct and indirect stresses on the mental health of offspring caring for an aging parent. The study is based on Pearlin, Lieberman, Menaghan, and Mullan's (1981) Stress Development Model. The research examined 345 subjects, men and women aged 40-59 who filled a questionnaire sent by post within their workplace. The research findings show that the various stresses of the caregiver role are mutually connected and have a significant positive effect on the mental health of caregiving offspring. Another finding shows that the extended family support variable acts as a buffer on the caregiving burden on the adult child.
In 2004 in Europe, more than two-thirds of those born during 1945–54 had a parent or parent-in-law alive, and the rates of co-residence with their ascendants ranged from less than four per cent in Sweden, Denmark and The Netherlands, to between 17 and 24 per cent in Italy, Spain and Greece. The proportions that had provided practical help to their parents during the previous 12 months had a north-south gradient, from approximately one-in-three in the northern countries to 15 per cent or less in the southern countries. In contrast, the proportions of the helpers that provided regular and almost daily help had an inverse pattern, being low in Sweden and Denmark and much higher in the south. Some of these differences may be attributable to variations among the countries in the interpretation of ‘help’. Help to elderly parents tends to be most associated with the gender of givers and receivers, the living arrangements, geographical proximity and needs of the parents, and the availability of adult children who can help. There is little evidence of a specific ‘baby-boomer generation’ effect on the probability of giving help.
Population aging is likely to lead to an increase in the number of people in need of assistance. It is well known that a large part of this assistance originates, and will continue to originate, from the network of relatives and friends. However, the effects of the provision of care on individuals' employment trajectories when this care is combined with employment of varying intensity or with childcare responsibilities have rarely been examined. The present study used proportional hazards models with the General Social Survey, Cycles 20 and 21, to assess the impact of providing care to a partner, a parent or parent-in-law, another relative, or a non-relative on the risk of leaving employment. The analyses show that providing care to a parent or parent-in-law increases the probability of leaving employment only among women employed full-time and among men and women who have no children or only adult children.
Research on the impact of quality of relationships between primary caregivers and their care recipients on burden and satisfaction with caregiving is still rare. The sample included 335 dyads of primary caregivers and care recipients who were cognitively intact. Face-to-face interviews were conducted at the respondents' homes using structured questionnaires. No significant correlation between caregiving burden and caregiving satisfaction was found. Quality of relationship was the most significant variable in explaining both caregiving burden and caregiving satisfaction, yet different sets of additional variables were found to explain each of the outcomes. Interventions should address quality of relationships in order to reduce burden and increase caregiving satisfaction.
The ‘sandwich generation’ has been conceptualised as those mid-life adults who simultaneously raise dependent children and care for frail elderly parents. Such a combination of dependants is in fact very unusual, and the more common situation is when adults in late mid-life or early old age have one or more surviving parents and adult but still partly dependent children. It can be hypothesised that for parents in this pivotal position, the demands from adult children and from elderly parents compete, with the result that those who provide help to one are less likely to provide help to the other. An alternative hypothesis, however, is that family solidarity has an important influence but is not universal, so that some pivotal-generation parents engage in intergenerational exchange in both directions, and there is a positive association between helping parents and helping children. To investigate this question, the paper presents an analysis of data from two broadly comparable national surveys, in Great Britain and the United States, on the care provided by women aged 55–69 years to their descendent and ascendent relatives. The results show that around one-third of the women reported providing help to members of both generations, and that around one-fifth provided support to neither. They broadly support the solidarity hypothesis, but provide some evidence that having three or more children is associated with a reduced likelihood of providing help to a parent.
This paper intends to reflect on some of the predominant traits of caring for older vulnerable people in Portugal, where the most common care model is a mix of informal home-based provision and support from the public and private sectors. We shall address some issues concerning the risks and limits of informal caretaking of older dependent people based on a case study of a woman who has to fulfil multiple roles, pushing her to the limit of her ability to cope. Evidence indicates that solutions to the challenges of caring for an ageing population, especially those in a vulnerable condition, require a consideration of material, social, cultural, and psychological measures. On the basis of the nature of the links between these areas, the quality of the care provided and the consequences for the working family carers, we can define standards of caring solutions for older people and hence derive policies for preventive and optimized interventions. Our final aim is to emphasize the importance of palliative care settings to improve the quality of life and minimize the suffering of both older people and their carers.
This article is focused on children providing and financing long-term care for their elderly parent. The aim of this work is to highlight the interactions that may take place among siblings when deciding whether or not to become a caregiver. We look at families with two children using data from the Survey of Health, Ageing and Retirement in Europe; our sample contains 314 dependent elderly and their 628 adult children. In order to identify the interactions between siblings, we have specified a two-person discrete game model. To estimate this model, without invoking the ‘coherency’ condition, we have added an endogenous selection rule to solve the incompleteness problem arising from multiplicity or absence of equilibrium. Our empirical results suggest that the three classical effects identified by Manski could potentially explain the observed correlation between the siblings' caregiving behaviour. Correlated effects alone appear to be weak. Contextual interactions and endogenous interactions reveal cross-effects. The asymmetric character of the endogenous interactions is our most striking result. The younger child's involvement appears to increase the net benefit of caregiving for the elder one, whereas the elder child's involvement decreases the net benefit of caregiving for the younger child. Copyright © 2009 John Wiley & Sons, Ltd.
The aim of this article is to analyse 20 Finnish working carers' perceptions of their sibling relations and the sharing of the responsibility for parental care. The main focus is on the interviewees' rationales for the participation or non-participation of their siblings in the parents' care. Almost all the interviewed carers stated that the division of care responsibilities is unequal and that they are the primary carers, but the majority did not convey any clear intention to try to persuade their siblings to increase their participation in parental care. In many cases, the siblings were described either as entirely absent or as providing occasional backup, but some interviewees reported that caring for the parent(s) was shared with their other siblings. Consequently, three participation patterns were identified: ‘absence’, ‘backup’ and ‘togetherness’. All the interviewees offered rationales for the unequal division of care tasks and responsibilities among the siblings. The discussion focuses on these rationales and their variations by participation patterns, and considers the similarity of the findings to those from previous American and British studies. The study concludes that social-care services should take the primary carer's siblings into consideration, although not always as a ‘resource’. It should not be taken for granted or assumed that the primary care-giver receives help from her or his siblings, even if their relationship is otherwise close and unproblematic.
Reciprocal benefits may exist in relationships between carers and their adult sons/daughters with intellectual disabilities, but the topic has not been widely studied. The present study investigated whether older carers of adult children with intellectual disabilities perceive emotional and tangible reciprocity in their relationships and the association between perceived reciprocity with quality of life. The authors surveyed 91 parental carers (aged 50+ years, mean = 60.8). Bivariate correlations and hierarchical regression analyses assessed the relationship between tangible and emotional reciprocity and carer quality of life variables (physical and mental health, depressive symptomatology, life satisfaction) and carers' desire for an alternative residential situation of their son/daughter. Overall, more tangible and emotional support was given than received from their adult children. However, despite varying levels of intellectual disability and functional impairments of their care recipient, carers did report receiving considerable support. Relative disadvantage (i.e., giving more than received) in tangible reciprocity was associated with increased depressive symptomatology and poorer mental health but also reduced desire for seeking an alternative residential situation for the person for whom they are caring. These relationships were attenuated after covariance analyses. Emotional reciprocity was not associated with any of the outcome measures. The results suggest that perceptions of reciprocity are relevant in caregiving for intellectual disability and may be an underappreciated asset in coping with caregiving.
This paper analyzes the impact of informal care by adult children on the use of long-term care among the elderly in Europe and the effect of the level of the parent’s disability on this relationship. We focus on two types of formal home care that are the most likely to interact with informal care: paid domestic help and nursing care. Using recent European data emerging from the Survey on Health, Ageing and Retirement in Europe (SHARE), we build a two-part utilization model analyzing both the decision to use each type of formal care or not and the amount of formal care received by the elderly. Instrumental variables estimations are used to control for the potential endogeneity existing between formal and informal care. We find endogeneity of informal care in the decision to receive paid domestic help. Estimation results indicate that informal care substitutes for this type of formal home care. However, we find that this substitution effect tends to disappear as the level of disability of the elderly person increases. Finally, informal care is a weak complement to nursing care, independently of the level of disability. These results highlight the heterogeneous effects of informal care on formal care use and suggest that informal care is an effective substitute for long-term care as long as the needs of the elderly are low and require unskilled type of care. Any policy encouraging informal care to decrease long-term care expenditures should take it into account to assess its effectiveness.
This paper describes the participation of informal caregivers in the discharge process when patients aged 80 and over who were admitted from home to different hospitals in Norway were discharged to long-term community care. Data for this cross-sectional survey were collected through telephone interviews with a consecutive sample of 262 caregivers recruited between October 2007 and May 2009. The Discharge of Elderly Questionnaire was developed by the research team and was designed to elicit data concerning informal caregivers' self-reported perceptions on participation in the discharge process. A descriptive and comparative analysis of Thompson's levels of participation reported by the older generation (spouses and siblings) and the younger generation (adult children and children-in-law, nieces and grandchildren) was undertaken using bivariate cross-tabulations and chi-square tests for association and trend. Analyses showed that the younger generation of caregivers received and provided information to hospital staff to a greater degree than the older generation. Overall, 52% of the informal caregivers reported co-operating with the staff to a high or to some degree. A multivariate logistic regression analysis was used to analyse factors predicting the likelihood of informal caregivers reporting co-operation with hospital staff. The odds of younger generation caregivers reporting co-operation were more than twice as high (OR = 2.121, P = 0.045) as the odds of the older generation. Caregivers of patients with a hearing impairment had higher odds of reporting co-operation (OR = 1.722, P = 0.049) than caregivers of patients with no such impairment. The length of hospital stay, the caregiver's and patient's gender and education level were not significantly associated with caregiver's co-operation. The informal caregivers' experiences with information practices and user participation in hospitals highlight important challenges that must be taken seriously to ensure co-operation between families and hospitals when elderly patients are discharged back to the community.
Background: Most palliative care research about caregivers relies on reports from spouses or adult children. Some recent clinical reports have noted the assistance provided by other family members and friends.
Aim: This population study aims to define the people who actually provide care at the end of life.
Setting/participants: A South Australian study conducted an annual randomized health population survey (n=23,706) over a 7 year period. A sample was obtained of self-identifying people who had someone close to them die and ‘expected’ death in the last 5 years (n=7915). Data were standardised to population norms for gender, 10-year age group, socioeconomic status, and region of residence.
Results: People of all ages indicated they provided ‘hands on’ care at the end of life. Extended family members (not first degree relatives) and friends accounted for more than half (n=1133/2028; 55.9%) of identified hands-on caregivers. These people came from the entire age range of the adult community. The period of time for which care was provided was shorter for this group of caregivers. People with extended family or friends providing care, were much more likely to be supported to die at home compared to having a spousal carer.
Conclusion: This substantial network of caregivers who are mainly invisible to the health team provide the majority of care. Hospice and palliative care services need to create specific ways of identifying and engaging this cohort in order to ensure they are receiving adequate support in the role. Relying on ‘next-of-kin’ status in research will not identify them.
Objective: To determine whether caregiving grandparents are at an increased risk for depressive symptoms.
Data Source: National sample (n=10,293) of grandparents aged 53–63 years in 1994, and their spouse/partners, who took part in the Health and Retirement Study (HRS).
Study Design: Grandparents were surveyed in 1994 and resurveyed every two years thereafter, through 2000. Over that period, 977 had a grandchild move in or out of their home. These grandparents served as their own controls to assess the impact of having a grandchild in the home.
Data Extraction: Depressive symptoms were measured using an abbreviated form of the Center for Epidemiologic Studies—Depression (CES-D) scale, scored 1–8, with a score ≥4 associated with depression “caseness.”
Principal Findings: At the time of the 1994 interview, 8.2 percent of grandparents had a grandchild in their home. However, there was substantial variation across demographic groups (e.g., 29.4 percent of single nonwhite grandmothers, but only 2.0 percent of single white grandfathers had a grandchild in residence). The impact of having a grandchild in the home varied by grandparent demographic group, with single grandparents and those without coresident adult children experiencing the greatest probability of elevation in depressive symptoms when a grandchild was in residence. For example, single nonwhite grandmothers experienced an 8 percentage point increase in the probability of having a CES-D score ≥4 when a grandchild was in their home, compared to when a grandchild was not in their home, controlling for changes in health care, income, and household composition over time (95 percent CI=0.1 to 15.0 percentage points).
Conclusions: Grandparents have a greater probability of elevated depressive symptoms when a grandchild is in their home, versus when a grandchild is not in their home. Single women of color bear a disproportionate burden of the depression associated with caring for grandchildren. Since an increasing number of grandparents function as a de facto safety net keeping their grandchildren out of formal foster care, identifying strategies to support the health and well-being of caregiving grandparents is an emerging priority.
This study examined support, stress, and well-being between adults who provide care for an aging and disabled parent and those who care for an aging and disabled parent-in-law. The study utilized a sample of individuals caring for a parent (n = 77), individuals caring for an in-law (n = 26) and a comparison group of noncaregivers (n = 1,939) from the Midlife Development in the United States study. In-law caregivers provided more financial assistance but adult child caregivers provided more emotional support and unpaid work. Adult child caregivers reported poorer mental health and family strain; in-law caregivers reported more spouse support and less family strain.
Older carers of adults with intellectual disabilities experience unique challenges. Outreach initiatives identify a high number who are unknown to support services and a case is made to proactively engage them to assist in future planning for their adult children. An earlier study by the authors suggested that, in Victoria, specialist case management programmes for older carers occupied a unique place within the service system. Discusses a study that further explored the functions of specialist programs for this group through a comparison with a mainstream disability case-management program. Few differences were found, although mainstream programs did not undertake outreach and community education functions. Models that build on the capacity of mainstream case management or carer support programs to work with older carers and target outreach more effectively are discussed.
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.
The majority of people with dementia live at home, and informal carers assume the role of key care providers, often supported by formal services. The purpose of this pilot study was to assess home-based care arrangements, to illustrate utilisation of formal services over time and to identify factors associated with perceived stability of the care situation from the informal carer's perspective. A self-administered questionnaire (D-IVA ‘Instrument for Assessing Home-Based Care Arrangements for People with Dementia’) was developed and distributed in a provincial–rural setting in Germany as a cross-sectional survey. Data analysis used descriptive statistics, unbiased conditional inference trees and thematic analysis for open-ended questions. In total, 84 care arrangements were assessed. The majority of participants were direct relatives of the care-dependent person [mostly adult children (48.8%) or spouses (27.4%)]. Formal services were already sought in the first year after onset of memory problems. The most frequently used formal services were home care nursing services (53.0%), day care (49.4%) and respite care (29.6%), whereas 15.5% did not use any type of formal support. Companion home visit, home care nursing service and day care were used over the longest periods of time. The recruitment strategy used in this study may have recruited persons who were relatively more dependent on their informal carers. In this small sample, carers' perceived stability of the care situation was high, and this was associated with the country of origin and sex of the person with dementia (P = 0.004 and 0.023 respectively). Most care arrangements consisted of a mix of informal and formal services. However, informal carers assumed prime responsibility. The questionnaire D-IVA proved to be suitable. It remains a challenge to further examine factors associated with perceived stability and to explain the phenomenon in its whole complexity. Further research using the D-IVA should consider applying complementing quantitative measures as well as qualitative methods.
Care for older people is a complex phenomenon, and is an area of pressing policy concern. Bringing together literature on care from social gerontology and economics, we report the findings of a mixed-methods project exploring networks of informal caring. Using quantitative data from the British Household Panel Survey (official survey of British households), together with qualitative interviews with older people and informal carers, we describe differences in formal care networks, and the factors and decision-making processes that have contributed to the formation of the networks. A network approach to care permits both quantitative and qualitative study, and the approach can be used to explore many important questions.
The success of 'ageing-in-place' aged care policy in Australia relies heavily on the unpaid work of informal carers. While there is a wealth of research regarding informal carers more generally, we know relatively little about the experiences of the 'sandwich generation': Adult children (mainly daughters) who provide care for a parent while often juggling paid work and the care of their own children or grandchildren. In this paper I undertake a critical analysis of 'ageing-in-place' policy through the lens of 'sandwich generation' carers of people with dementia. Drawing from a composite case study, I argue that these carers are located at the interstices of powerful discourses such as 'individualisation' and 'care' and explore how the everyday practice of care is negotiated within these spaces. Inhabiting these spaces can be costly for carers and we need to consider how policies can better support intergenerational carers if 'ageing-in-place' is to be sustainable.
Purpose of the study: Caregiver burden is a multidimensional construct, addressing tension and anxiety (stress burden), changes in dyadic relationships (relationship burden), and time infringements (objective burden) resulting from caregiving. The study aims were to assess (a) whether the dimensions of burden were the same for caregiving spouses and adult children, (b) the role of assisting with problem behaviors (PBs) and activities of daily living (ADLs) on each dimension of burden, and (c) the role of each dimension of burden on self-rated health and intention to institutionalize the care receiver. Design and Methods: This study included 280 spouse/partner and 243 adult child caregivers of persons with chronic illnesses. Results: Analysis using 2-group structural equation modeling showed that the factor structure of burden was equivalent for spouses and adult children. For both groups, assisting with ADLs was directly related with objective burden, whereas PBs were directly related to all dimensions of burden. For both groups, stress burden was the only predictor of self-rated health, whereas PBs were significantly linked with intention to institutionalize. However, stress burden among spouses and relationship burden among adult children were significantly linked with intention to institutionalize. Implications: We discuss the research and practice implications of the differing needs of spouses and adult children.
The ageing of the population will increasingly result in reliance on the family for care in the community. Existing reviews have provided insights into the needs and health outcomes of family caregivers, but are disproportionately skewed towards spousal caregivers. Presently, a large majority of family caregivers are adult children. Adult children are distinct from spousal caregivers in terms of the combination of roles they occupy and the relationship they have with the care recipient. These unique considerations can have important implications for their well-being. A growing body of literature has investigated the factors that contribute to adult children caregivers' (ACCs) well-being; however, no reviews to date have synthesised this body of literature or appraised its methodological quality. Our objective was to identify the range and types of factors that contribute to ACC well-being across studies. A scoping review was conducted. Medline, Psycinfo, EMBASE and CINAHL databases (January 1996–August, 2012) were systematically searched for studies investigating ACC well-being. Inclusion/exclusion criteria were applied, methodological quality was appraised, the data were charted and a narrative synthesis was conducted. Fifty-five studies met our inclusion criteria. Factors that contribute to ACC well-being were found to be either: (i) care recipient-related (e.g. nature of limitations, amount of care required); (ii) caregiver-related (e.g. psychological dispositions of the ACC); or (iii) socially embedded (e.g. parent–child relationship, multiple role involvement, social support available to the ACC). Socially embedded factors that contribute to ACC well-being have received the most attention in the literature. Among these factors, ACC well-being is uniquely impacted by the quality of the parent–child relationship and combination of roles occupied. The majority of studies were cross-sectional. Future studies should therefore employ a longitudinal design to inform our understanding of the changes that take place in the parent–child relationship and multiple role involvement across the care-giving trajectory.
This study examined predictors of older adults' and primary caregivers' willingness to use formal long-term care (LTC) services to understand possible use patterns of mandatory public LTC insurance programs in Korea. It focused on views regarding who (adult children or the government) should bear the responsibility for older adults' care. Logistic regression models were estimated using data from 1,168 older Korean adults aged 65 or older and their primary caregivers from a national survey. The results showed that older adults' and their caregivers' views on care responsibility were a dominant predictor of their willingness to use both formal home care services and nursing home care services. Both older adults and their family caregivers' willingness to use LTC services should be considered when predicting demand for LTC services. Efforts should promote the perspective that formal LTC services are an acceptable social norm.
Taiwan is facing a rapid change in the composition of its population. As the population ages, a greater demand for long-term care services and, in particular, nursing homes is expected. Before deciding who really needs nursing home care, it is important for policy makers to understand the current pattern of utilisation and what factors are associated with entry. This research assesses the relative importance of predisposing, enabling and need factors that lie behind this. It is based on a survey of elderly people in registered nursing homes, a comparison with a national sample of elderly people in their own homes and interviews with the lucid elderly patients (i.e. could communicate with no problems) and their carers. It was found that nursing home entry was associated with advanced age, gender, educational level and dependency levels of elderly people. After controlling for age, need factors have the greatest impact on admission. Specific medical problems such as cardiovascular, neurological and skeletal muscular diseases were also major contributors. Although most elderly people in Taiwan are cared for in their own homes by their families, under certain circumstances entry to a nursing home seemed inevitable. Decisions about nursing home entry were mainly taken within a family context with adult children being the main players while professionals played a relatively minimal role.
Adult's decision to care for aging family members has an aggregate effect on public income support programs as well on as health care services and costs. Families have continuously been the primary source of support and care of elderly members. It is estimated that adult children constitute 41.3% of all informal caregivers (Wolff & Kasper, 2006). However, recent demographic trends have changed the landscape of parental caregiving by placing unprecedented levels of competing demands for care, potentially limiting the availability of adult children to provide parental care. This examination explores parental care behavior in four European countries (Norway, England, Spain, and Germany) and Israel, emphasizing a potential trade-off between care for offspring and care for aging parents.
The paper examines trends in the probability of providing intense care for older parents over the fifteen years between 1985 and 2000, and asks what would happen to the numbers of people providing care to older parents if these trends were to continue in the coming decades. Because the present study is based on an analysis of past trends in provision of informal care, it allows for some key assumptions underlying the projections of informal care in future years to be examined empirically.
The stress of care giving for spouses and adult children has been extensively documented in the empirical literature. More recently attention has been paid to children's involvement in family care giving. Qualitative studies in the social welfare field have highlighted the social restrictions caring places upon children. There remains a need, however, to understand what children are thinking and feeling in an effort to cope with their care-giving demands. This study used a focus group methodology and individual interviews to explore the experiences of 17 young carers aged between 10 and 16. Thematic analysis was employed to identify themes relating to the nature of stressors, their appraisal of them, and the coping strategies they use to manage the task of caring.
In the present meta-analysis, we integrated findings from 228 studies on the association of six caregiving-related stressors and caregiving uplifts with burden and depressed mood. Care recipients' behavior problems showed stronger associations with caregiver outcomes than other stressors did. The size of the relationships varied by sample characteristics: Amount of care provided and care receivers' physical impairments were less strongly related to burden and depression for dementia caregivers than for caregivers of nondemented older adults. For spouse caregivers, physical impairments and care recipients' behavior problems had a stronger relationship to burden than for adult children. Furthermore, we found evidence that the association of caregiver burden with the number of caregiving tasks, perceived uplifts of caregiving, and the level of physical impairment of the care receiver were stronger in probability samples than in convenience samples.
Purpose: Transitions in caregiving, such as becoming a primary caregiver to grandchildren or having adult children and grandchildren move in or out, may affect the well-being of the grandmother. Design and Methods: This report describes caregiving patterns at 3 time points over 24 months in a sample of 485 Ohio grandmothers and examines the effects of stability and change in grandmother caregiving roles (raising a grandchild, living in a multigenerational home, or not caregiving to grandchildren). Drawing on the Resiliency Model of Family Stress, the study examined caregiving stress and reward, intrafamily strain, social support, resourcefulness, depressive symptoms, mental and physical health, and perceived family functioning. Caregiver group, time of measurement, switching between caregiver groups, and baseline age, race, education, work status, and marital status were considered as independent variables within the context of a one-way treatment structure in a mixed-model multivariate analysis. Results: There were significant caregiver group effects for all variables, except mental health and resourcefulness. Grandmothers raising grandchildren reported the most stress, intrafamily strain, and perceived problems in family functioning, the worst physical health and more depressive symptoms, and the least reward and subjective support. Across groups, there were significant time effects, with worsening physical health and increased stress over time. Switching to higher levels of caregiving was associated with worsening physical health and increases in stress, intrafamily strain, and perceived problems in family functioning. Implications: Recommendations for research and for practice, especially during times of caregiving transition or for grandmothers raising grandchildren, are discussed.
This paper reports on a study exploring the experiences and meaning of social participation for family carers of people living with dementia. Participants were 33 family carers (17 spouses and 16 adult children) of older adults diagnosed with dementia (any stage or type) who responded to advertisements by the national Alzheimer's association, Alzheimer's Australia. Data were collected through semi-structured face-to-face and/or telephone interviews using an interview guide, which included prompts such as ‘Tell me about what social participation means to you’, and ‘How did this change…’. The methods of grounded theory were drawn upon to guide sampling and analysis of data, which continued until theoretical saturation was achieved and occurred over the period September 2011 to March 2012. Data arising from the interviews were analysed line-by-line and coded and categorised using the constant comparative method, with codes clustered into themes and with abstraction from the themes to arrive at the core process. The core category arising from the data was adaptation, which encompassed four main themes: autonomy to choose; the impact of care-giving; employing strategies; and establishing meaningful connections. Carers went through a process whereby the ways in which they had previously participated socially were compromised, which often prompted an exploration of new ways in which to remain socially engaged.
The family is a space for learning that is in constant renewal and enrichment. However, when one of its members has a disability, the family plays a major role in the daily reconstruction of the intimate and social life of its members. And as ageing is inevitable, parents are constantly worried about who will take care of their children. Children become increasingly more dependent as parents face physical limitations in caring for their children. A qualitative descriptive exploratory study using a phenomenological approach was carried out to answer the initial question: “Do parents of adult children with disabilities experience specific needs?” Based on this methodology, data were collected through semi-structured interviews with five elderly parents caring for their disabled children and attending the CEFPI (Centre for Integrated Vocational Education and Training). Results indicate that these parents live for their children, which is inherent to a moderate level of care dependence for self-care functions such as personal hygiene, walking, dressing and undressing. They care for the children by themselves, and they feel alone in their role.
Objectives: This study sought to (1) identify barriers to spousal support for chronic illness self-care among community-dwelling older adults; and (2) describe the potential availability of self-care support from adult children living outside of the household.
Methods: Nationally representative US sample of chronically ill adults aged 51þ were interviewed as part of the Health and Retirement Study (N=14,862). Both participants and their spouses (when available) reported information about their health and functioning. Participants also reported information about their contact with adult children and the quality of those relationships.
Results: More than one-third (38%) of chronically ill older adults in the US are unmarried; and when spouses are available, the majority of them have multiple chronic diseases and functional limitations. However, the vast majority of chronically ill older adults (93%, representing roughly 60 million Americans) have adult children, with half having children living over 10 miles away. Most respondents with children (78%) reported at least weekly telephone contact and that these relationships were positive. Roughly 19 million older chronically ill Americans have adult children living at a distance but none nearby; these children are in frequent telephone contact and respondents (including those with multiple chronic diseases) report that the relationships are positive.
Discussion: As the gap between available health services for disease management and the need among community-dwelling patients continues to grow, adult children—including those living at a distance—represent an important resource for improving self-care support for people with chronic diseases.
In the United States and globally, increasing numbers of older parents are living with their adult children. Making the decision to live together requires careful thought and planning; particularly when the decision means the children will be responsible for their elder parents’ care, the physicians of all parties should be consulted. More than one-third of caregivers state that they seek advice from their physician or other clinician when information is needed about this transition. Using the case of a couple receiving care from their daughter in her own home, we review the prevalence and epidemiology of adult children caring for a parent in the adult child's home, important issues to consider, and a framework for clinicians to help guide their patients through this transition. We describe the physician's ongoing role in caring for and advising both the older parent and the adult children during common stages of multigenerational living: before the move and during coresidency and subsequent care transitions.
This paper is concerned with the issue of substitution between formal and informal care in Britain between 1985 and 2000. This period provides the conditions for a ‘natural experiment’ in social policy. During the late 1980s/early 1990s, there was an increase in long-stay residential care for older people, which came to an end around the mid-1990s. The paper examines whether this increase in formal services led to a decline in informal care, and whether this was subsequently reversed. The focus is on provision of intense informal care by adult children to their older parents, trends in which are identified using General Household Survey data. The paper shows that there was a decline in provision of intense and very intense co-resident care for older parents between 1985 and 1995, which came to an end in the mid-1990s. These trends in intergenerational care were negatively related to changes in long-stay residential care. In particular, controlling for age and disability, there was evidence of substitution between nursing home/hospital care and very intense co-resident care for older parents. A key policy implication is that an expansion of very intense formal services for older people could bring about a decline in very intense intergenerational care. The paper relates these findings to the current debate on reform of the long-term care system in England.
A key feature of population ageing in Europe and other more economically developed countries is the projected unprecedented rise in need for long-term care in the next two decades. There is, however, considerable uncertainty over the future supply of unpaid care for older people by their adult children. The future of family care is particularly important in countries planning to reform their long-term care systems, as is the case in England. This article makes new projections of the supply of intense unpaid care for parents aged 65 and over in England to 2032, and compares these projections with existing projections of demand for unpaid care by older people with disabilities from their children. The results show that the supply of unpaid care to older people with disabilities by their adult children in England is unlikely to keep pace with demand in future. By 2032, there is projected to be a shortfall of 160,000 care-givers in England. Demand for unpaid care will begin to exceed supply by 2017 and the unpaid ‘care gap’ will grow rapidly from then onwards. The article concludes by examining how far this unpaid ‘care gap’ is likely to be met by other sources of unpaid care or by developments in new technology and examines the implications of the findings for long-term care policy.
Literature on responsibility of adult children for aging parents reflects lack of conceptual clarity. The authors examined filial concepts across five cultural groups: African-, Asian-, Euro-, Latino-, and Native Americans. Data were randomly divided for scale development (n = 285) and cross-validation (n = 284). Exploratory factor analysis on 59 items identified three filial concepts: Responsibility, Respect, and Care. Confirmatory factor analysis on a 12-item final scale showed data fit the three-factor model better than a single factor solution despite substantial correlations between the factors (.82, 082 for Care with Responsibility and Respect, and .74 for Responsibility with Respect). The scale can be used in cross-cultural research to test hypothesis that predict associations among filial values, filial care-giving and caregiver health outcomes. [Journal abstract]
The study examined the effect of adult children’s disability on parents’ physical health in later life and the extent to which parents’ symptoms of alcoholism in mid-life moderates the link between children’s disability and later life parental health. Analyses are based on data from the Wisconsin Longitudinal Study. The analytic sample included parents of children with developmental disabilities (n = 145) or mental health problems (n = 200) and 2,432 parents of unaffected children. The results showed that the negative health consequences in later life of having a child with a developmental disability were greater for those who showed more symptoms of alcoholism in mid-life. However, symptoms of alcoholism in mid-life did not significantly moderate the impact of an adult child’s mental health problems on parents’ later life physical health. The findings suggest a potential area where gerontological social workers could intervene, given the negative impact of symptoms of alcoholism on the health of aging parents of children with a disability who may be significantly more susceptible to the negative health impacts of alcohol compared to their younger counterparts.
As the numbers of older people increase in future years, demand for long-term care is also likely to increase substantially. Since the long-term care system in England depends heavily on informal or unpaid care, the increase in demand for long-term care is likely to mean an increase in demand for informal care. [...]
The current paper looks at the supply of informal care specifically by the adult children of older people. The paper makes projections of the numbers of people providing intense care, to older parents1 to 2041. The projections are based on an on-going study of recent past trends in the provision of intense intergenerational care to older people in Great Britain, using the 1985, 1990, 1995 and 2000 General Household Survey (GHS) data on provision of informal care (Pickard 2002). The paper examines trends in the probability of providing intense care for older parents over the fifteen years between 1985 and 2000, and asks what would happen to the numbers of people providing care to older parents if these trends were to continue in the coming decades. Because the present study is based on an analysis of past trends in provision of informal care, it allows for some key assumptions underlying the projections of informal care in future years to be examined empirically.
This study investigates how (a) the reliance on public care and (b) the type of public care received by older people in the Netherlands depends on the availability of partners and adult children. Older people aged 65 years and older were surveyed in the Netherlands Kinship Panel Study at two time-points. Survey results were linked to registry data on public care receipt at the two time-points. Multilevel models revealed that receiving frequent help in the household from children was not associated with public care receipt. Only men having a partner were less likely to receive public care. Further analyses comparing the receipt of skilled and unskilled forms of public care revealed that female partners are especially important in rendering unskilled care unnecessary compared to skilled care. Two arguments may explain our findings. One is that a gender-bias exists in processing public care requests – men are perceived as less able to provide care to their female partners. Another is that men lack the skills, or perceive themselves as lacking the care skills that female partners have. Caution is advised against introducing policy measures that increase pressure on female partners.
For this special issue, the latest research findings on the topic of families living with parental psychiatric disabilities were solicited and compiled, to inform policymakers and practitioners with the best research available, while informing researchers about new developments in the field. The creative efforts of practitioners on the ground who strategically cobble together service responses for parents and families, as well as the extraordinary efforts of parents, adult children, young carers, and advocates who continue to bring attention to family issues in psychiatric rehabilitation, are applauded. These things are happening as we build the evidence base. That is, we are “crossing the bridge” to evidence-based practice while we are “building it.” This is not without its challenges, in policy, practice, or research. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
Carers play an essential role in the lives of people suffering from mental health problems. Caring is very often a relational activity carried out by family members. Assertive Outreach (AO) services ought to be particularly well placed to support carers, but their impact upon families is not well understood. We set out to understand the intervention of AO services from a family perspective, and in particular to explore its meaning from the perspectives of pairs of carers. Three pairs of carer-parents participated in six individual open-ended interviews. Transcripts were analysed from an interpretative phenomenological perspective. All three families described a series of distressing crisis experiences prior to their relationship with AO. Carers had felt painfully excluded from their parental roles – both by their children and by services. Two further themes illuminated their subsequent relationship with AO: first, carers felt reassured; valued and included; and benefited from improvements in family relationships. Second, there were still concerns about the continuing relationship with professionals, and about the future of their family member – especially in relation to how services might secure these things. It was striking that there were different needs and concerns not only between the three couples but within each pair. Changing roles and relationships within the family were related to what families wanted from services. We note that engagement with systemic ways of working may prove fruitful for the development of AO services.