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.     

Patterns of family service needs and caregiver–child relationships among families at risk of child welfare involvement

Caregivers at risk of involvement in the child welfare system report high levels of need for multiple types of services, and their children have high levels of mental health need. Caregivers from families with more service needs, as well as unmet needs, are less likely to be engaged with child welfare services and may have diminished capacity to care for their child. This study takes a family‐centered approach by using latent class analysis to identify patterns of both caregiver and child service needs among families at risk of child welfare involvement. Using data from the LONGSCAN consortium (N = 957), we identified 4 classes of service needs among child welfare‐involved families. We then examined differences between the 4 classes based on demographics, maltreatment histories, unmet service needs, and caregiver–child relationship. The caregivers were split fairly evenly among the 4 classes: low needs, medical needs, poverty support, and high needs. There were significant differences between classes on assessed variables, with higher levels of needs associated with diminished caregiver–child relationships.     

Social support and stress of kin caregivers of orphaned children in Addis Ababa,Ethiopia: Implications for practice and policy

Using a mixed methods research design, this study analysed available social supports and stressors among 127 kin caregivers who were caring for HIV‐ and AIDS‐affected orphans and vulnerable children in Addis Ababa, Ethiopia. The conceptual framework of the study was social support viewed as a buffer. Kin caregivers’ scores indicate a low level of social support and a high level of stress. The amount of support caregivers received from formal sources is considered inadequate, irregular and inconsistent. Kin caregivers’ stress is situational and largely related to poverty, especially food insecurity. Social service providers should consider programmes that strengthen support to help kin caregivers deal with major stressors. Policy makers should ensure that both specific child and caregiver supportive policies and related programmes respond to the overwhelming numbers of orphans and vulnerable children in Ethiopia through explicitly acknowledging the significant role of kinship care.     

Depression and caregiver burden among rural elder caregivers

Family caregivers of older adults frequently experience feelings of burden and depression though they may not come to the attention to health and service providers until they are at a point of crisis. Through a simple screening tool, the Maine Primary Partners in Caring (MPPC) project identified individuals providing care to older adults through rural primary care practices, in order to provide upstream interventions before caregivers were in crisis. This paper describes a sample (n=62) of rural family caregivers identified through their physicians' offices. High levels of caregiver burden and depression were reported. Family support and knowledge of caregiver tasks predicted decreased caregiver burden and depression, while isolation predicted increased caregiver burden. Implications of these results for gerontological social workers are outlined.     

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 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.     

Caregiver involvement in behavioural health services in the context of child welfare service referrals: a qualitative study

Human service agencies serve a growing number of adults with behavioural health needs. Despite these agencies' key role in identifying need and facilitating services, many individuals do not receive care or end services prematurely. Few studies have explored the experiences of families referred to behavioural health services by such agencies or the extent to which families' perceptions of service need align with those of treatment providers and frontline workers. This study presents findings from a qualitative study of caregivers involved with child welfare agencies who were referred to behavioural health services. Researchers reviewed agencies' case records and conducted in‐depth interviews with 16 caregivers, 9 child welfare caseworkers and 12 behavioural health treatment counsellors. Findings suggest that when deciding to engage in services, caregivers weigh not only their individual and family behavioural health needs but also potential agency intervention, including loss of child custody. Many professionals reported that involvement with a child welfare agency hindered the caregiver's disclosure of behavioural healthcare needs. Implications for managers and practitioners are discussed.     

Transitions in Caregiving: Evaluating a Person-Centered Approach to Supporting Family Caregivers in the Community

Caregivers of older adults provide a wide range of informal supports and services that enable older adults to continue living in the community. This study describes the use of a multicomponent intervention combined with a person-centered approach to assist caregivers of older adults in the community. Four hundred and eighteen caregiver and care recipient dyads participated in this study and their outcomes related to burden, depression, well-being, and care recipient functional status were evaluated. The findings suggest that adult child and spousal caregivers experience burden differently. Programs designed to support caregivers must tailor services to the unique needs of adult child and spousal caregivers.     

Perspectives of South African caregivers in receipt of Child Support Grants: Implications for family strengthening interventions

Cash transfers have delivered measurable benefits for poor and vulnerable children in low‐ and middle‐income countries. However, on its own, a cash transfer is insufficient to promote holistic child well‐being. In the quest for appropriate complementary family support services, known as ‘cash plus’ programing, this qualitative study sought to explore the perspectives of a group of South African caregivers, all of whom were in receipt of a Child Support Grant (CSG), in relation to their own caregiving and family functioning. Critical areas of support to families were identified to further scale up the already positive impacts of the CSG, such as mental health services, social supports for caregivers, decreasing levels of poverty and growing caregiving knowledge and skills. Key conclusions are that improving the quality and integration of public services and developing culturally appropriate and evidence‐based family strengthening programmes are critical to complement and boost the positive impacts of the CSG.     

Dementia Caregivers and Live Discharge from Hospice: What Happens When Hospice Leaves?

ABSTRACT

Hospice offers holistic support for individuals living with terminal illness and their caregivers. Some individuals receiving hospice services experience a slower decline in health as than expected, resulting in a ‘live discharge’ from hospice. A live discharge affects both patient and caregiver(s).The current study (N=24) explored the experiences of caregivers of adults with dementia who experienced a live discharge from hospice. Findings emphasize the comprehensive services covered under the Medicare Hospice benefit and those lost after a live discharge. Implications for social workers supporting caregivers are discussed, including the need to view the patient-caregiver unit during a live discharge.     

An Ecological Understanding of Caregiver Experiences in Palliative Care

Palliative care is specialized health care to improve quality of life for patients with serious illness and their families through prevention and relief of suffering. A Palliative Care Institute was held in western Washington to capture community voices about diverse needs, strengths, and opportunities for improvement of palliative care. Researchers employed qualitative methods to obtain thematic data, provide real-time analysis, and engage in a multivoting technique to reflect stakeholder interest in individual themes and prioritize larger group interests. Bronfenbrenner’s ecological systems framework was used to explore caregiver experiences. Within the microsystem, caregivers reported difficulties in interactions with medical providers as a key challenge. Within the mesosysytem, interactions between patients and medical providers and the impact on caregivers were explored. Within the exosystem, caregivers reported lack of control over the schedules of personal care staff. Macrosystem influences included impact of local culture on the development of palliative care services. Chronosystem influences include de-medicalization of childbirth and its impact on perceptions of palliative care. Implications include the need for social workers to be proactive in fostering trust and effective communication between care providers and caregivers, and the demand for health care provider training in communication with patients and families.     

Chinese American Family Caregivers’ Perception of Program Use and Caregiver Stress

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.     

Living with and Caring for Older Family Members

Abstract

Using the strengths-based Caregiver Well-Being Scale, this research provides social workers with strategies for assessing and promoting caregiver well-being. One hundred eighteen family caregivers (64 spouse and 54 adult child caregivers) are used to examine caregiver relationship to the care-recipient and 138 caregivers are included in the analyses for coresidential arrangement with the care-recipient. Predictors of well-being are highlighted for each group. Caregiver competence and depression predict well-being for spouse, adult child and non-co-resident caregivers. Depression is the only predictor for co-resident caregivers. Using the activities of living sub-scale, depression predicts wellbeing for all groups. Additionally, caregiver strain relates to spouse wellbeing. Implications for social work practice with family caregivers are highlighted.     

Associations between ongoing COVID-19 lockdown and the financial and mental health experiences of Australian families

In 2020, Australia's successful COVID-19 public health restrictions comprised a national “initial lockdown” (March–May) and “ongoing lockdown” (July–November) for metropolitan Victorian residents only. We evaluated associations between ongoing lockdown and family finances and mental health. In the June and September 2020 Royal Children's Hospital National Child Health Polls, caregivers of children in Victoria and New South Wales (NSW) reported the following: job/income loss; material deprivation (inability to pay for essential items); income poverty; mental health (Kessler-6); perceived impact on caregiver/child mental health; and caregiver/child coping. Data from caregivers (N = 1207/902) in June/September were analysed using difference-in-difference modelling (NSW provided the comparator). During Victoria's ongoing lockdown, job/income loss increased by 11% (95%CI: 3%–18%); Kessler-6 poor mental health by 6% (95%CI: −0.3%–12%) and perceived negative mental health impacts by 14% for caregivers (95%CI: 6%–23%) and 12% for children (95%CI: 4%–20%). Female (vs. male) caregivers, metropolitan (vs. regional/rural) families, and families with elementary school-aged children (vs. pre-/high-school) were the most affected. The ongoing lockdown was associated with negative experiences of mental health, employment and income, but not deprivation or poverty, likely because of government income supplements introduced early in the pandemic. Future lockdowns require planned responses to outbreaks and evidence-informed financial and mental health supports.     

Thrown back: Reintegration experiences of National Guard/Reserve mothers of young children

Few studies have examined the experiences and perceptions of servicewoman mothers and their children, even as an increasing number of them have experienced deployment and combat exposure. The present paper describes a qualitative study that explored National Guard/Reserve (NG/R) mothers' experiences with mothering and co‐parenting during reintegration and their perceived priorities, supports, challenges and needs. Interpretive phenomenological analysis of seven in‐depth qualitative interviews produced themes including reunion and loneliness, the importance of time, help seeking and gendered experiences. Notably, all participants transitioned immediately back into primary caregiver roles upon homecoming, and several described how difficult it was to readjust while privately dealing with unmet mental health needs. Findings underscore the importance of a flexible suite of service options that meet key needs, most importantly, child care, social–emotional support for children and peer‐based parenting support specific to servicewoman mothers. For NG/R mothers, who may live far from base, community‐based services are essential, but as participants described, civilian social workers and other professionals must develop specialized knowledge, skills and experience to provide appropriate support.     

The relationship between adverse childhood experiences,health and life satisfaction in adults with care experience: The mediating role of attachment

Adverse childhood experiences (ACEs) are associated with a plethora of negative outcomes. Research has also found that adults who were separated from parental care and lived in alternative care settings during childhood have high levels of ACEs and are more likely to have poor outcomes. A growing body of research has supported the importance of attachment as a mechanism underlying the relationship between ACEs and adult wellbeing. However, little work has examined the role that attachment may play in the outcomes of adults who resided in residential and foster care during childhood. The current study examined the role of attachment avoidance and anxiety in the associations between ACEs and mental health, physical health, and life satisfaction in a sample of 529 adults with alternative care experience from 11 nations. Attachment avoidance partially mediated the relationship between ACEs and life satisfaction, mental health, and physical health. Attachment anxiety partially mediated the relationship between ACEs and life satisfaction and mental health, but not physical health. Taken together, the present study suggests that both attachment anxiety and avoidance play important, but unique, roles in understanding the relationship between ACEs and health and wellbeing for adults with care experience. Implications and limitations are discussed.     

Support for Carers of Older People: The Roles of the Public and Voluntary Sectors in Sweden

This study examines the support services offered to informal caregivers, whether directly or indirectly, in Sweden over the period of a special investment initiative between 1999 and 2001. Data were collected in a Swedish county using two separate mail questionnaires in 1999 and 2001. The first questionnaire was addressed to each municipality in the region. The second questionnaire was sent to a random sample of voluntary organizations in the area. The findings showed that only the municipalities provided direct forms of relief service, day care and financial support. The voluntary organizations’ support for carers focused on support groups and training as well as services for older care users themselves. There was a significant increase between 1999 and 2001 in the number of municipalities providing information material and training for carers and using professional caregiver consultants. On the one hand, the Swedish public social care system appears to be following the international pattern in paying more attention to informal caregivers and investing in support services for them. On the other hand the findings did not show any growth in support provided by the voluntary organizations. Here Swedish welfare is dissimilar to other European countries, where it is increasingly common for voluntary organizations to play an important role as providers of support for carers.     

Inside the Black Box: what constitutes a day in a residential treatment centre?

Residential Treatment Centres (RTCs) provide 24-hour care and mental health services to young people, many of whom are referred from county departments that oversee services to young people involved with child welfare services, mental health services and corrections. While RTCs are required to provide mental health services to young people, the regulations governing these programmes have few specific requirements about the process, content or duration of treatment. Therefore, many questions have arisen about what a typical RTC day looks like and whether it differs among providers or differs based on the severity or type of the young person's mental-health related behaviours and symptoms. This study conducted interviews with RTC providers in the State of Colorado on this topic. Most RTC services were relatively uniform across case types within each RTC. It appears that with a few exceptions, a similar set of services is provided to all young people, regardless of their problems.     

The Self-Forgiveness Process of Caregivers After the Death of Care-Receivers Diagnosed With Alzheimer's Disease

ABSTRACT

This study explores the relationship of self-forgiveness and adaptive coping, religious/spiritual practices, social support, decreased grief, and mental well-being. 133 caregivers were surveyed. Bivariate analysis and stepwise regression models revealed that decreased grief, adaptive coping, and social support were significant in explaining the variation in self-forgiveness. This is one of the first studies to address self-forgiveness as part of the grieving process of Alzheimer's caregivers. Future directions are explored supporting inclusion of self-forgiveness as an aspect of grief and adaptive coping; which is further enhanced by the level of social support experienced by the caregiver.     

Interconnections among Homelessness,Family Separation,and Mental Health: Implications for Multi-Sectoral Social Services

This qualitative study explored the interconnections among the phenomena of homelessness, family separation, and mental health and substance abuse issues within the social services, geographic, and infrastructure context of northern Ontario. In-depth semi-structured interviews were conducted with thirteen participants. Findings revealed the effects of colonization in the form of poor and overcrowded housing conditions in the northern First Nations, difficulties in obtaining affordable and suitable housing in northern towns and cities, reliance on the scarce social services for survival, and valiant attempts to cope with the cold climate of northern Ontario. All participants reported multiple and intergenerational experiences of separation from family due to involvement of child welfare system, placement in residential schools, death of family member(s), flooding, and epidemics. Participants described their lifelong struggles with mental health and substance abuse issues. All three phenomena were tied together in various configurations of causes and consequences. The implications include the need for critical examination of the historical policies and practices, early intervention for mental health and substance abuse issues, greater support for youth transitioning out of care, creation of a continuum of housing options, collaboration across multiple social services sectors, and incorporation of Indigenous worldview and practices in the mainstream services.