Family-centered care: a resource for social work in end-of-life and palliative care

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.     

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.     

Allowing Family to be Family: End-of-Life Care in Veterans Affairs Medical Foster Homes

The Medical Foster Home program is a unique long-term care program coordinated by the Veterans Health Administration. The program pairs Veterans with private, 24-hour a day community-based caregivers who often care for Veterans until the end of life. This qualitative study explored the experiences of care coordination for Medical Foster Home Veterans at the end of life with eight Veterans’ family members, five Medical Foster Home caregivers, and seven Veterans Health Administration Home-Based Primary Care team members. A case study, qualitative content analysis identified these themes addressing care coordination and impact of the Medical Foster Home model on those involved: (a) Medical Foster Home program supports Veterans’ families; (b) Medical Foster Home program supports the caregiver as family; (c) Veterans’ needs are met socially and culturally at the end of life; and (d) the changing needs of Veterans, families, and caregivers at Veterans’ end of life are addressed. Insights into how to best support Medical Foster Home caregivers caring for Veterans at the end of life were gained including the need for more and better respite options and how caregivers are compensated in the month of the Veteran’s death, as well as suggestions to navigate end-of-life care coordination with multiple stakeholders involved.     

Team-Based Volunteerism with the Seriously Ill: A Qualitative Analysis from 10 Volunteers' Perspectives

Volunteers offer means through which social workers may extend their ability to support individuals with serious illnesses near the end of life. This study explored the experience of volunteers on teams organized initially as a grassroots movement in response to stigmatized and often socially isolated people with HIV/AIDS dying in the community. Volunteer care teams later expanded to individuals with other serious illnesses. This model spread as a means of meeting the growing need for practical support for seriously ill homebound individuals. Yet, little has been reported in the scientific literature about the interworkings of these teams and their optimal level of functioning. Qualitative inquiry, in the form of semi-structured interviews, explored perspectives of 10 volunteers with experience in volunteer team caring and identified the social processes that shaped their work. The volunteers discussed balance between positive life meaning gained from volunteer work, lessons learned, and negative aspects of a volunteer team approach to caring for the seriously ill in the community. Further investigation is warranted to validate the volunteer care team approach as a cost-effective tool to help seriously ill individuals and caregivers.     

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.     

Till Death Us Do Part? A Critical Analysis of Obligation and Choice for Spousal Caregivers

Research demonstrates a significant number of carers identify obligation or lack of other alternatives as the reasons they undertake informal care. By utilizing critical discourse analysis, this research explores choice for informal caregivers in contemporary Australian social policy. Analysis demonstrates increasing shifts in policy toward choice in consumer-directed care, a feature absent for those who provide care. Familial care is a central pillar of Australian social policy, as it is in many liberal and conservative welfare regimes. Analysis reveals that these core social policies are fundamentally incongruent, with significant implications for individuals and social work practice.     

Mosaic of difference: enhancing culturally competent aging-related knowledge among social workers

The professional literature has not adequately addressed the behavioral and social factors that contribute to different coping outcomes for African American elder caregivers as compared to non African Americans. Awareness and understanding of these unique experiences would better prepare professionals to work with such clients. This study examines the predictors of emotional distress among 46 African American women who provide care to dependent elderly parents. Multivariate statistical analyses show that elder caregivers' rating of quality of life, their years of caregiving, as well are their poor heath constitute significant predictors of risk for depression. The results of the study provide support for the inclusion of more culturally appropriate measures of caregiver distress, and provide insights to inform social work practice, policy and research concerning African American female elder caregivers in the 21st century.     

Mosaic of Difference

Summary

The professional literature has not adequately addressed the behavioral and social factors that contribute to different coping outcomes for African American elder caregivers as compared to non African Americans. Awareness and understanding of these unique experiences would better prepare professionals to work with such clients. This study examines the predictors of emotional distress among 46 African American women who provide care to dependent elderly parents. Multivariate statistical analyses show that elder caregivers' rating of quality of life, their years of caregiving, as well are their poor heath constitute significant predictors of risk for depression. The results of the study provide support for the inclusion of more culturally appropriate measures of caregiver distress, and provide insights to inform social work practice, policy and research concerning African American female elder caregivers in the 21st century.     

‘Disability is not a word we use’: Social workers' professional judgements about support for disabled young people leaving care

Disabled young people leaving care often experience a more complex transition to adulthood than other youths. Still, policy and services can fail to recognize the intersection between a young person's care experiences and disability. Drawing on data from a qualitative interview study with 14 social workers who work with aftercare in the Norwegian child welfare services, we investigate social workers' professional judgements about support for this subgroup of the leaving care population. Our analysis uses the theoretical construct of institutional logics and shows that social workers did not include concepts of disability in their judgements about support for these young people. Instead, the social workers' considerations were guided by three other organizing principles: a ‘medical logic’, an ‘activation logic’ and an ‘aftercare logic’. We discuss these findings in light of critical disability studies and argue for a more nuanced understanding of disability in social work practice with care leavers. Highlighting disability rights and going beyond diagnosis and categorisations of disabled people can challenge a medical model approach to service provision.     

Educational success for children in public care: advice from a group of high achievers

ABSTRACT Research over the past 20 years has consistently shown that children in public care fall behind at school, seldom achieve good qualifications, and are much less likely than their peers to go on to further or higher education. However, a small minority of looked‐after children do well academically. This paper examines the opinions of 38 high‐achieving young people who spent at least a year in residential or foster care on what they think are the best ways to enhance the educational experience of looked‐after children. An evaluation of four key questions from a semistructured interview highlighted the importance of foster carers, residential workers, social workers and teachers in providing support and encouragement for academic achievement. On the other hand, many of these individuals emphasized their dislike of being ‘singled out’ by the teacher. A third of the participants believed that negative stereotypes and low expectations of children in care among professionals and care providers were major obstacles to their educational success. Over half the sample reported that in many children’s homes basic necessities such as books, a desk and a quiet place to do homework were lacking. In addition their opportunity to engage in outside interests and hobbies was severely limited. By contrast, for these individuals foster care had provided better opportunities. On entering higher education the majority of the participants had faced severe problems. They stressed the need for continuing financial support and adequate year‐round accommodation, because, unlike most students, these care leavers usually have no parental home to return to during university vacations. A third of participants also felt a strong desire for a ‘guardian angel’ to support and encourage them during their time at university. The paper concludes that the views of these thoughtful and resilient individuals should be taken very seriously and translated into improvements in policy and practice. Official guidance now highlights the importance of education for looked‐after children, but changing attitudes and priorities at ground level presents a major challenge.     

More than therapy: The link between adverse childhood experiences,social support,and therapeutic services

Adverse childhood experiences (ACEs) have a cumulative effect on physical, emotional, and social well‐being throughout the life course. ACEs also impact parenting practices, which may contribute to intergenerational cycles of trauma. Access to child mental health services and caregiver social support are two protective factors that may reduce the burden of ACEs. To advance understanding of the relationships between caregiver social support and child mental health services among caregivers with ACEs, we interviewed 13 caregivers of young children receiving outpatient mental health services. Thematic analysis revealed the integral role of therapeutic providers in the social support circles of caregivers with high ACE scores. Caregivers frequently named therapeutic providers as the first point of contact in a problem situation. Implications for social work research, clinical practice, and advocacy are discussed.     

An ecological systems approach to understanding social support in foster family resilience

Families who care for children in the foster care system often experience challenges related to the system, accessing services and supports, and managing relationships. Despite these challenges, many families thrive because of unique attributes and strengths that contribute to experiences of resilience. Using an ecological framework, this study examined social support among resilient foster families to better understand how foster caregivers experienced positive reciprocal transactions across systems. As part of a larger study, in‐depth narrative interviews were conducted to examine the process of resilience for families who foster. Findings revealed that families accessed and benefited from social support on micro‐level, meso‐level and macro‐level. Understanding how families cultivated social support across multiple levels offers implications for practice and policy when considering how best to retain and support families who care for vulnerable children.     

A Multifactorial Approach to Predicting Death Anxiety: Assessing the Role of Religiosity,Susceptibility to Mortality Cues,and Individual Differences

Death anxiety is not only experienced by individuals receiving end-of-life care, but also by family members, social workers, and other service providers who support these individuals. Thus, identifying predictors of individual differences in experienced death anxiety levels may have both theoretical and clinical ramifications. The present study assessed the relative influence of religiosity, susceptibility to mortality cues, state and trait anxiety, and demographic factors in the experience of death anxiety through an online survey distributed to members of two online communities related to end-of-life care. Results indicated that cognitive and emotional susceptibility to mortality cues, as well as gender, predicted differences in death anxiety. Conversely, religiosity and age did not increase the predictive power of the model. Thus, death anxiety may be a function of emotional, cognitive, and sociocultural factors that interact in complex, but predictable, ways to modulate the response to mortality cues that occur in one’s life.     

Does Volunteering Experience Influence Advance Care Planning in Old Age?

Advance care planning (ACP) increases the likelihood patients will receive end-of-life care that is congruent with their preferences and lowers stress among both patients and caregivers. Previous efforts to increase ACP have mainly focused on information provision in the very late stage of life. This study examines whether a relationship exists between volunteering and ACP, and whether this relationship is associated with social support. The sample comprises 877 individuals who were aged 55+ in 2008, and were deceased before 2010. The sample is derived from seven waves (1998–2010) of data from the Health and Retirement Study. Logistic regression results showed that overall ACP and durable power of attorney for health care (DPAHC) were both higher (OR = 1.61 and 1.71, respectively) for older adults with volunteering experience in the past 10 years than those without such experience. Available social support (relatives and friends living nearby) was not associated with the relationship between volunteering and ACP. Other factors related to ACP included poorer health, death being expected, death due to cancer, older age, and being a racial minority. Involving older people in volunteer work may help to increase ACP. Future research is encouraged to identify reasons for the association between volunteering and ACP.     

Aging and Elder Care in Japan: A Call for Empowerment-Oriented Community Development

This article provides a brief overview of the situation of the elderly and their caregivers in Japan, including demographic changes in Japan, development and changes in long-term care policy that have targeted the poorly integrated community care system, and other challenges that the elderly and family caregivers face. Policy direction designed to address these issues is increasingly targeting care by the community versus support care by society (which was initially the main strategy). The potential of empowerment-oriented community development intervention strategies to decrease the gap between available institutional and formal community-based services and the needs of the elderly and their families in their efforts to meet late life challenges is described. The need for an increased role of social workers in community development interventions is explored and strategies are suggested.     

Providing Care for Persons with Dementia in Rural Communities: Informal Caregivers’ Perceptions of Supports and Services

Dementia is one of the costliest and most time-consuming diseases among older persons. Although informal caregivers provide the majority of care for persons with dementia, little is known about the self-perceived need for social services of caregivers of persons with dementia within rural areas. This pilot study examined the knowledge, access and intent of the practice-oriented service model of caregivers of persons with dementia in rural communities in the Midwest U.S. After a systematic training, researchers interviewed 11 rural caregivers of persons with dementia (n = 11). Data were analyzed using thematic analysis. Although similarities with other caregivers of persons with dementia were found, important differences suggesting unique issues among these rural caregivers of persons with dementia. Many participants found strength in their community, which often served as a safety net of support. Consistent with existing literature, participants expressed financial concerns, geographic barriers and lack of dementia-specific services when using formal services. The need for more specialized formal services in rural areas to supplement existing informal care networks is discussed. Policies and services based on rural caregivers’ unique concerns and challenges and that build upon their existing care networks are recommended.     

Social Support and Self-Rated Health of African American Women Informal Caregivers: Urban and Rural Differences

In this study, we examined how geographic location might differently influence social support and self-rated health for rural and urban African American women caregivers. We used cross-sectional data from 253 urban and 263 rural women primary caregivers. Controlling for key demographic factors, we regressed caregivers’ self-rated health on social engagement, structural, and functional aspects of social support for urban and rural caregivers separately. The perception of family functioning was positively associated with urban and rural caregivers’ self-rated health. Urban caregivers reported having significantly more contact with their family and more informal helpers compared to rural caregivers. Furthermore, church attendance, a measure of social engagement, was significant for urban caregivers’ self-rated health, but not rural caregivers. Our findings affirmed the importance of foregrounding context and disaggregating social support, and point to the need for interventions targeting family functioning and paying attention to geographic location.     

Self-Help:

The Strengthening the Informal Support System of the Hispanic Elderly, a project designed to supply the Hispanic adult caregiver, i.e., relatives, friends and neighbors, with information and social support through a self-help group approach offered experiential learning and facilitated the formation of an informal network in which the participants explored their personal feeling towards the caregiving role, shared problems and concerns and engaged in mutual problem-solving activities. The project was conducted with fifty-eight persons who were the major caregivers of Hispanic elderly residing in four selected sites throughout New York City.