Well‐being among employed and non‐employed caregiving women in Taiwan

Chou Y‐C, Kröger T, Chiao C, Pu C‐Y. Well‐being among employed and non‐employed caregiving women in Taiwan This study addressed various groups of non‐employed/employed and non‐caring/caring women in Taiwan. Data from the 2006 National Taiwanese Women Survey (at age 16–64, n= 6,017) were analysed to determine whether there are differences in terms of well‐being, as measured by self‐rated health and family life satisfaction, between women who work and/or care and between different carer groups. Other factors associated with well‐being of carers of young children (n= 1,697) were also analysed. The results showed that non‐employed carers of disabled adults stood out as the most disadvantaged group. However, the importance of work has been replaced by support among carers of young children. This study suggests that unpaid carers, particularly carers of disabled adults who are non‐employed, ought to be supported by policies. To improve carers' well‐being, care–work reconciliation among working‐age women needs to be included in the future care scheme in Taiwan.     

Exploring how workplace and social policies relate to caregivers’ financial strain

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.     

Volunteerism and Older Adults

Abstract

This study was designed to examine differences in care-giver and care recipient characteristics, caregiving and work demands and resources, and role strain among Black, Hispanic, Asian, and White employed family caregivers. Significant differences were found with respect to caregiver and care recipient characteristics, types of assistance provided, and workplace support. Minority caregivers were economically disadvantaged and provided higher levels of care. Whites reported higher levels of role strain than Black and Hispanic caregivers, after controlling for caregiver and care recipient characteristics, demands, and resources. The findings indicate that care giving policies and programs must be broadened to incorporate the strengths and needs of ethnically diverse caregivers. Family practitioners need to be able to assess the applicability and differential impact of particular interventions, policies, and benefits, and to design relevant programs for ethnically diverse care-givers and their families.     

Mothers’ Experience of Post-Traumatic Growth in Pediatric Kidney Transplantation

ABSTRACT

Parenting a child with chronic kidney disease has a profound impact on the parental caregivers across social, emotional, and physical functioning. As the survival rates for children with chronic kidney disease increase, the demands on parents caring for these children intensify. The aim of this study was to understand the lived experience of being a mother of a child who has undergone kidney transplantation. Seven mothers caring for children with chronic kidney disease in Ontario, Canada participated in in-depth interviews that were analyzed according to the principles of hermeneutic phenomenology. The present study presents the findings concerning post-traumatic growth: personal strength, new possibilities, enhanced relationships, appreciation of life and spiritual change. Recognizing positive aspects of stressful situations and the potential for growth can impact the practice of social workers and other health-care professionals. Ultimately the assistance that is provided to parent caregivers can be improved with a better understanding of the whole experience.     

Live Discharge from Hospice and the Grief Experience of Dementia Caregivers

When an individual has dementia, family members are involved in many care transitions in their roles as caregivers. One such transition is the ‘live’ discharge from hospice services. This occurs when an individual no longer meets eligibility criteria. This can be difficult for caregivers who have been anticipating an end to understand in the context of their grief process. This qualitative study (N = 24) explored the experience of caregivers of adults with dementia, including Alzheimer’s disease, who experienced a ‘live’ discharge from hospice. Specifically, the experience of grief is examined. Results from this study highlight the complexity of caring for someone with a terminal disease and the grief experience in end-of-life care as caregivers struggle to understand the individual’s terminal prognosis as temporary. This is further complicated for caregivers who must resume caregiving responsibilities or assume a new caregiving role after experiencing a loss of hospice services. Finally, hospice social workers are well positioned to offer emotional and other concrete support to caregivers who experience a ‘live’ discharge.     

Adapting the Friends of the Children programme for child welfare system‐involved families

Research has shown the importance of long‐term, caring adults for children in foster care. This paper reviews the Friends of the Children (FOTC) long‐term mentoring programme and how it was adapted to serve children and families with child welfare system involvement. This study's two research questions are (1) How do Friends (FOTC's paid professional mentors) currently work with, and in turn, have an impact on, child welfare‐involved families? and (2) How can Friends better support child welfare system‐involved caregivers and families to promote family stability, permanence, and child well‐being? Data were collected from 21 caregivers (foster and biological), 24 FOTC Friends, five child welfare workers, and five teachers. Qualitative analyses of focus group, interview, and open‐ended survey data revealed a wide variety of ways Friends currently support children and families. In addition, several recommendations were made for strengthening programming. These findings provide valuable insights into providing long‐term mentoring to child welfare system‐involved children and families.     

Working and caring for a disabled adopted child during a pandemic

Integrating work and family demands can be challenging for families caring for a child with one or more disabilities. The pandemic and its changes to work, schooling and service delivery potentially added to these challenges. This exploratory mixed methods study sought to understand how the pandemic affected adoptive parents' work–life fit and service use. A total of 200 participants responded to survey questions about parenting an adopted child with a disability prior to, and after, the onset of Covid-19. More than half of the parents (59.2%) reported that it was somewhat to very difficult to integrate both work and family demands. Parents with greater access to workplace flexibility and supportive supervisors had significantly less difficulties combining work and family. Families who reported more problems with accessing mental health services, special education and respite care reported significantly more challenges with work–family fit. Parents reported increased stress due to the pandemic changes, but many also shared positive changes such as more time for family. Online services were experienced as effective for some children and reduced time spent driving to appointments. Recommendations for workplace and social service practice and policy supporting adoptive parents of children with disabilities are discussed.     

Measuring Family Caregiver Perceptions of Support in Caring for Children and Youth With Mental Health Concerns

ABSTRACT

This correlational study assessed how families of children with mental illness perceived the levels of support they received from informal and formal resource providers and the associations between perceived support and child outcomes. Adult caregivers (N = 904) of youth receiving public mental health care services were administered the Family Caregiver Perceptions of Support Scale developed by the authors to assess family caregiver perceptions of support prior to and at termination of services. Factor analysis identified three types of caregiver anticipated supports: informal support resources, support for treatment plan influence, and health care resources. The domains were significantly and positively associated with one another but did not uniformly correlate with youth mental health outcomes. The study provides preliminary evidence that treatment gains in youth mental health outcomes are observed when caregivers perceive support in treatment processes. Suggestions for future research are made, stressing the importance of caregivers and providers working together and describing needs related to future scale improvements.     

Quality of Life among Compound Caregivers and Noncompound Caregivers of Adults with Autism

ABSTRACT

Children diagnosed with autism spectrum disorder (ASD) are reaching adulthood and require some form of lifelong care. Many parents continue caring for their adult children with ASD for as long as physically possible. As parents age, many also may provide care for another loved one, such a spouse or parent. This study compares compound (those providing care for multiple loved ones) and noncompound parental caregivers (those providing care solely for an adult child with ASD) on six dimensions of quality of life (enjoys life, life is meaningful, ability to concentrate, accepts bodily appearance, satisfied with self, and frequency of negative feelings). Specifically, this study determined the extent to which compound and noncompound caregivers’ quality of life differed. The present study included 320 parents (age 50 or older) of adult children (18 or older) diagnosed with ASD who completed a web-based survey. T-tests for independent samples compared the six dimensions and overall quality of life between compound and noncompound caregivers. Results indicated that compound caregivers were less able to concentrate and had fewer negative feelings than noncompound caregivers. Further research is needed to determine the effects of caregiving on the multidimensional aspects of quality of life.     

Impact of a multicomponent support services program on informal caregivers of adults aging with disabilities

A multicomponent support services program was implemented for veterans aging with disabilities and their informal caregivers (n = 42 dyads). Caregiver outcomes (satisfaction, physical and mental health status, burden, and benefits) were evaluated before and after program use. Caregivers reported significant improvements in mental health post-program. Caregivers who provided care to individuals with impaired physical health experienced meaningful improvements in burden after the support services were rendered. Supporting caregiver health status through such programs is vital to preserve noninstitutional long-term care for persons aging with disabilities, particularly when care is provided over many years to an individual with physical impairments.     

Exploring Social Care: Applying a New Construct to Young Carers and Grandparent Carers

Mainstream literature on paid care for children, frail elderly people and people with chronic illness or disability, and unpaid care provided usually by family members within households and kin networks tends to establish dichotomies: formal/informal, commodified/non‐commodified. Recent feminist literature rejects these dichotomies, developing models of social care in which the interconnections of paid and unpaid care are mapped within policy frameworks. This paper uses theoretical frameworks of ‘social care‘: care as labour; care as a relationship embedded in obligation; care incurring a range of costs; to explore two case‐studies: young carers aged up to 24 years who are most often caring for a co‐resident parent; and grandparents who are the primary carers of their grandchildren. The latter may occur under the aegis of child protection authorities, or Family Court orders, or in informal arrangements, not licensed by state authorities. This analysis of the international literature and Australian research data affirms the power of the social care framework, and also shows the influence of social policy settings on informal care provision.     

Family-Centered Care

Abstract

Recent trends in medicine reflect an attempt to be more patient-centered and while this is progress from the disease- or provider-focused model familiar in healthcare, the experiences and contributions of family as caregivers continue to be overlooked in some settings. The family-centered care model, developed most notably in pediatrics, but emerging in HIV, cancer, and aging, is presented as a resource to increase family involvement at the end of life. In this paper, family-centered care is defined, caregiving trends including support needs of formal and informal caregivers are discussed, and barriers to family-centered services are identified. Reintroducing family into the focus of care at the end of life is the primary goal of this paper. The family-centered model of care offers an appropriate framework for understanding the value of family in end-of-life care and fits well with social work perspectives that understand individuals in the context of their family system and greater environment.     

Veterans’ Informal Caregivers in the “Sandwich Generation”: A Systematic Review Toward a Resilience Model

Social work theory advanced the formulation of the construct of the sandwich generation to apply to the emerging generational cohort of caregivers, most often middle-aged women, who were caring for maturing children and aging parents simultaneously. This systematic review extends that focus by synthesizing the literature on sandwich generation caregivers for the general aging population with dementia and for veterans with dementia and polytrauma. It develops potential protective mechanisms based on empirical literature to support an intervention resilience model for social work practitioners. This theoretical model addresses adaptive coping of sandwich- generation families facing ongoing challenges related to caregiving demands.     

Engaging on the ‘front line’: exploring how family support teams construct meaning in their work with young mothers

This paper explores the provision of family support services for young mothers within a Sure Start Children's Centre, drawing on data collected within a larger study. It identifies how the family support team attempted to build supportive relationships with young mothers between the ages of 16 and 19 years. The findings presented here draw on narrative interviews (n = 10) and focus group interviews (n = 2) with the family support team that included early years workers, family support workers and their managers. The findings captured how the participants actively resisted the stigma (Goffman 1963) of teenage motherhood in order to support young mothers in gaining the necessary skills and knowledge to care for their child. Drawing on the findings, this paper argues that the building of a supportive relationship enables a young mother to construct positive counter‐narratives about her parenting experience. This suggests that the family \to offer informal early support to young mothers who are at risk of more formal intervention. However, the complexity of this task should not be underestimated because in doing this, the family support team must at all times ensure the well‐being and safety of the child.     

Physical and mental health changes in aging foster parents: Do child behavioural problems hasten declines?

This study examined foster parent physical and mental health over time. It was hypothesized that increased severity and frequency of child behavioural problems, whether externalizing or internalizing, would be associated with poorer health over time, especially for foster parents ≥60 years of age. Data from the baseline and Wave 2 interview of the 2010 National Survey of Child and Adolescent Well‐Being were used. The final analytic sample included kin and nonkin foster parents who had custody of a foster child for both waves of data collection (n = 962). Ordinary Least Squares regression models with lagged dependent variables showed that foster parents ≥60 had deteriorating physical health over time, but caregiver age alone had no association with worsening mental health. However, parents ≥60 caring for children with externalizing behavioural problems had significantly improved physical health. Mental health of parents ≥60 significantly diminished if child externalizing or internalizing problems worsened. Findings indicate that for aging foster parents, externalizing child behaviours may stimulate physical activity and improved physical health, yet any type of child behavioural problem can deteriorate mental health functioning.     

Daily links between school problems and youth perceptions of interactions with parents: A diary study of school‐to‐home spillover

This study examined how academic and peer problems at school are linked to family interactions at home on the same day, using eight consecutive weeks of daily diary data collected from early adolescents (60% female; M age = 11.28, SD = 1.50), mothers and fathers in 47 families. On days when children reported more academic problems at school, they, but not their parents, reported less warmth and more conflict with mothers, and more conflict and less time spent around fathers. These effects were partially explained by same‐day child reports of higher negative mood. Peer problems were less consistently associated with parent‐child interactions over and above the effects of academic problems that day. A one‐time measure of parent‐child relationship quality moderated several daily associations, such that the same‐day link between school problems and child‐report of family interactions was stronger among children who were closer to their parents.     

Parental empowerment and child behavioural problems during youth care involvement

The aim of this study was to examine changes in parental empowerment and child behavioural problems during a period of youth care and how changes are related to the kind of services provided. We compared a preservation service that was family‐centred (FCS) with out‐of‐home services that were primarily child‐centred (CCS). The sample consisted of 621 families who were supported by FCS (n = 434) or CCS (n = 137). Information about parental empowerment and child behavioural problems was gathered at the start and end of youth care. Significant changes during treatment were identified with t tests and effect sizes. Significant improvements emerged on all empowerment scales for FCS but only on the behavioural control subscale for CCS. Moreover, significant improvements emerged on all child behavioural scales for both FCS as CCS. Cross‐lagged analysis showed that the kind of service, in favour of FCS, predicted parental empowerment but not child behavioural problems. Parental empowerment and child behavioural problems were negatively related. This paper discusses the potential for parental empowerment and FCS elements in CCS out‐of‐home care and the need for follow‐up research on this subject.     

Housing needs of grandparent caregivers: grandparent,youth, and professional perspectives

ABSTRACT

This qualitative study examined the housing needs of grandparent caregivers and the youth in their care in New York State. Nine focus groups were conducted separately with grandparent caregivers (n = 46) and youth (n = 34), and interviews were conducted with key informants (n = 17) knowledgeable about housing and issues. Housing needs of greatest priority, contextual differences, and potential barriers to securing housing and social services were identified. Key themes indicated that housing challenges stem from four problem domains: the experience of poverty, which creates affordability challenges that trap grandparent caregivers and their grandchildren in unsuitable homes and unsafe neighborhoods; physical challenges of aging grandparents, which require specific housing accommodations; changes in family composition when taking in grandchildren, which necessitate moving out of prior accommodations or changing housing plans due to regulatory issues; and obstacles to obtaining needed benefits, including a lack of information, burdensome application processes, ineligibility, and a shortage of resources. These issues are discussed with implications for policy and practice.     

Development,Feasibility, and Piloting of a Novel Natural Mentoring Intervention for Older Youth in Foster Care

Aging out of foster care is associated with deleterious emerging adulthood outcomes. The enduring presence of a caring adult, such as a natural mentor, can improve outcomes for emancipating foster youth. Caring Adults ‘R’ Everywhere (C.A.R.E.) is a novel, child welfare-based intervention designed to facilitate natural mentor relationships among aging-out youth. Our aims were to test the feasibility of implementing C.A.R.E. and the feasibility of conducting a randomized controlled study with older foster youth. Twenty-four foster youth aged 18–20.5 years were recruited and randomly assigned to the intervention (n = 12) or control groups (n = 12). Ten natural mentors were identified and contacted for participation in the intervention and study. Process-oriented qualitative data and quantitative pre- and postintervention outcome data were collected and analyzed. Utilizing a controlled rigorous design, the findings highlight the positive experience of both the intervention youth and their natural mentors with C.A.R.E. Overall, results support the continued refinement, delivery, and rigorous testing of C.A.R.E. with great promise for programmatically supporting natural mentor relationships among youth aging out of foster care.