Ethical Issues in Family Care Today

2016 ◽  
Vol 34 (1) ◽  
pp. 67-87 ◽  
Author(s):  
Patrick Barrett ◽  
Mary Butler ◽  
Beatrice Hale
Keyword(s):  
Lived Experience ◽  
Family Caregivers ◽  
Ethical Issues ◽  
Family Care ◽  
Well Being ◽  
Formal Caregivers ◽  
Care Recipients ◽  
Practical Concern ◽  
Social Scientific ◽  
Caregiver Role

The abstract consideration of ethical questions in family and informal caregiving might rightly be criticized for ignoring the lived experience of people. This chapter seeks to avoid such oversight by reflecting on ethical issues in family care in a way that is based on careful social scientific inquiry into the well-being of caregivers. The chapter draws on our research and experience in working with family caregivers, both professionally and personally. We step back from a practical concern with policies to support the well-being of caregivers to consider ethical issues associated with their typically hidden role. The chapter begins by noting the growing reliance on family care today. It proceeds to outline the dynamic experience of moving into and out of the caregiver role, before discussing key ethical issues associated with family care. Many of these stem from the risk that caregivers can come to share in the reduced circumstances and vulnerability of those for whom they care. Critical ethical issues are related to the typically "unboundaried" responsibility of family caregivers for the well-being of the cared-for person, something that can be contrasted with the more boundaried and intermittent responsibility of formal caregivers. Additionally, all too often, family caregivers encounter situations where their responsibilities exceed their capacities, but where a choice to not provide care will result in harm to the cared-for person. In discussing these issues, this chapter seeks to make the case for developing more responsive forms of support that promote positive benefits for both caregivers and care recipients.

Potentially preventable hospitalizations in dementia: family caregiver experiences

2017 ◽  
Vol 29 (7) ◽  
pp. 1201-1211 ◽  
Author(s):  
Tatiana Sadak ◽  
Susan Foster Zdon ◽  
Emily Ishado ◽  
Oleg Zaslavsky ◽  
Soo Borson
Keyword(s):  
Lived Experience ◽  
Family Caregivers ◽  
Care Recipient ◽  
Preventable Hospitalizations ◽  
Health Crisis ◽  
Care Recipients ◽  
People With Dementia ◽  
Mitigating Factors ◽  
Health Event ◽  
Caregiver Experiences

ABSTRACTBackground:Health crises in persons living with dementia challenge their caregivers to make pivotal decisions, often under pressure, and to act in new ways on behalf of their care recipient. Disruption of everyday routines and heightened stress are familiar consequences of these events. Hospitalization for acute illness or injury is a familiar health crisis in dementia. The focus of this study is to describe the lived experience of dementia family caregivers whose care recipients had a recent unplanned admission, and to identify potential opportunities for developing preventive interventions.Methods:Family caregivers (n = 20) of people with dementia who experienced a recent hospitalization due to an ambulatory care sensitive condition or fall-related injury completed phone interviews. Interviews used semi-structured protocols to elicit caregivers’ reactions to the hospitalization and recollections of the events leading up to it.Results:Analysis of interview data identified four major themes: (1) caregiver is uncertain how to interpret and act on the change; (2) caregiver is unable to provide necessary care; (3) caregiver experiences a personal crisis in response to the patient's health event; (4) mitigating factors may prevent caregiver crises.Conclusions:This study identifies a need for clinicians and family caregivers to work together to avoid health crises of both caregivers and people with dementia and to enable caregivers to manage the health of their care recipients without sacrificing their own health and wellness.

scholarly journals Grief Experiences in Family Caregivers of Children with Autism Spectrum Disorder (ASD)

2019 ◽  
Vol 16 (23) ◽  
pp. 4821 ◽  
Author(s):  
Jorge Bravo-Benítez ◽  
María Nieves Pérez-Marfil ◽  
Belén Román-Alegre ◽  
Francisco Cruz-Quintana
Keyword(s):  
Autism Spectrum Disorder ◽  
Family Caregivers ◽  
Family Members ◽  
Well Being ◽  
Structured Interview ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Children With Asd ◽  
Caregiver Role ◽  
The Impact

The main objective of this study was to analyse the experience of grief and feelings of loss in family caregivers of children diagnosed with autism spectrum disorder (ASD), as well as the perceived overload from taking on the primary caregiver role. Twenty family caregivers of children with ASD participated. The family members were assessed using an ad-hoc semi-structured interview that addressed the families’ reactions to the diagnosis, implications for daily functioning, and concerns for the immediate and long-term future of their relatives with ASD. The results indicate that family caregivers of children with ASD endure intense and continuous sorrow and grief due to the impact that having and caring for a child with these characteristics has on all aspects of their lives. These data highlight the importance of creating support and intervention programmes and services focused on the feelings and manifestations of ambiguous grief that occur in these family members, in order to improve their well-being and quality of life and reduce caregiver role overload.

The Lived Experience of Patients and Family Caregivers in Managing Pneumoconiosis

2021 ◽  
pp. 104973232110028
Author(s):  
Polly W. C. Li ◽  
Doris S. F. Yu ◽  
Samuel Y. S. Tam
Keyword(s):  
Lived Experience ◽  
Family Caregivers ◽  
Well Being ◽  
Self Esteem ◽  
Behavioral Changes ◽  
Interpretive Description ◽  
Role Functioning ◽  
Social Lives ◽  
Impending Death ◽  
The Relationship

The daily challenges of patients with pneumoconiosis and their caregivers in living with and providing care for this disease remain unexplored. As guided by the interpretive description, we found that pneumoconiosis patients suffered from highly anxiety-provoking symptoms and physical debilitation, which evoked high levels of distress and sense of impending death. The reduced functional capacity disrupted patients’ role functioning and self-esteem. The perceived stigma of the embarrassing symptoms and treatments further disrupted their self-concept and social lives. Providing care for pneumoconiosis patients was demanding and burdensome, which jeopardized family caregivers’ physical, emotional, and social well-being, and the relationship strain with the patients added further frustration to them. The perceived caregiving gain supported them to fully engage in daily caregiving. To improve the well-being of pneumoconiosis patients, a comprehensive empowerment-based dyadic care model is required to optimize adaptive behavioral changes and self-esteem, and improve self-efficacy in disease management for this cohort.

scholarly journals A Systematic Review of Interventions That Reduce Family Caregiving Time

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 269-269
Author(s):  
Eric Jutkowitz ◽  
Joseph Gaugler ◽  
Zachary Baker
Keyword(s):  
Systematic Review ◽  
Family Caregivers ◽  
Family Caregiving ◽  
Family Care ◽  
Care Gap ◽  
Health Trends ◽  
Care Recipients ◽  
Multicomponent Interventions ◽  
Published Research

Abstract Due to multiple long-term sociodemographic and health trends contributing to the impending family care gap, there likely is no single policy or intervention that could increase the number of family caregivers in the U.S. to the levels required to fill such a gap. However, the amount of time that a family caregiver spends providing assistance is potentially mutable. Given the pressing concerns of the family care gap, identifying interventions or approaches that could reduce existing caregiving time is of considerable importance. This presentation provides the results of a systematic review of published research to identify the effects of interventions on the amount of time family caregivers spend on their caregiving tasks. Pharmaceutical approaches directed to care recipients, technology interventions, case management, multicomponent interventions, and care settings all appeared to reduce caregiving time. Improved operationalization, study design, and similar factors will help guide future intervention research to reduce caregiving time.

scholarly journals Aspects of Grit Among Dementia Family Caregivers

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 8-8
Author(s):  
Jyoti Savla ◽  
Karen Roberto ◽  
Jennifer Margrett
Keyword(s):  
Family Caregivers ◽  
Well Being ◽  
Future Research ◽  
Spiritual Support ◽  
Dementia Caregivers ◽  
Dementia Caregiver ◽  
Caregiving Roles ◽  
Caregiver Role ◽  
The Impact

Abstract Dementia family caregivers often show deep devotion and a strong sense of purpose and duty toward their relatives needing care. The concept of grit, which includes aspects of commitment, purpose, perseverance, and resilience, is a novel theoretical approach to expanding understanding of dementia family caregiver strengths amidst the challenges they face. Multiple psychosocial and contextual factors are likely to interact with and influence grit among these caregivers. This symposium addresses commitment to the family dementia caregiver role, willingness to embrace the stressful work of caregiving, and perseverance in finding ways to sustain caregiving roles under typical and adverse circumstances. Blieszner focuses on associations between grit and stressors and strains that challenge caregiver well-being and jeopardize continued caregiving. Wilks considers the impact of spiritual support on sustaining resilience among Caucasian and African American dementia caregivers. McCann explores caregivers’ responses to changes in informal support and social interactions available to assist with home care tasks over the course of the COVID-19 pandemic. Albers examines the strengths and resources caregivers draw upon to manage the challenges of caring for and supporting a relative in long-term residential care during the pandemic. Collectively, these presentations provide new insights into the range of influences on aspects of grit and circumstances in which grit sustains caregiving. Discussant Margrett considers the value of the concept of grit for furthering understanding of caregivers’ abilities to manage typical and unique challenges in their caregiver roles and offers suggestions for future research and interventions to enhance grit among dementia family caregivers.

scholarly journals Caregiving in a Pandemic: COVID-19 and the Well-Being of Family Caregivers 55+ in the United States

2022 ◽  
pp. 107755872110624
Author(s):  
Yulya Truskinovsky ◽  
Jessica M. Finlay ◽  
Lindsay C. Kobayashi
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
Family Care ◽  
Well Being ◽  
The United States ◽  
National Sample ◽  
Work From Home ◽  
More Care ◽  
Using Data ◽  
The Impact

Little is known about the effects of Coronavirus disease 2019 (COVID-19) on older family caregivers. Using data from a national sample of 2,485 U.S. adults aged ≥55, we aimed to describe the magnitude of disruptions to family care arrangements during the initial wave of the COVID-19 pandemic, and the associations between these disruptions and the mental health outcomes (depression, anxiety, loneliness, and self-rated health) and employment outcomes (job loss or furlough, hours or wages reduced, transition to work-from-home) of family caregivers. We found that COVID-19 disrupted over half of family caregiving arrangements, and that care disruptions were associated with increased depression, anxiety, and loneliness among caregivers, compared with both noncaregivers and caregivers who did not experience disruptions. Family caregivers who experienced pandemic-related employment disruptions were providing more care than caregivers who did not experience disruptions. These findings highlight the impact of the pandemic on an essential and vulnerable health care workforce.

Longitudinal Associations Between Expectations of Receiving Care in the Future and Life Satisfaction Among Older Adults in Korea

2021 ◽  
Author(s):  
Jinho Kim ◽  
Heesoo Yoon
Keyword(s):  
Older Adults ◽  
Life Satisfaction ◽  
Family Caregivers ◽  
Fixed Effects ◽  
Family Care ◽  
Well Being ◽  
Conclusive Evidence ◽  
Subjective Well Being ◽  
The Future ◽  
Future Care

Abstract Objectives Uncertainty about receiving care and assistance in the future has been increasing among older adults in Korea. This study examines whether expectations about receiving care from various sources (i.e., formal and/or filial caregivers) are related to life satisfaction among older adults in Korea. Methods Using data from the Korean Longitudinal Study of Ageing (N = 3,607, aged 65 or older), this study estimated fixed effects regression models to investigate longitudinal within-person associations between future care expectations and life satisfaction. Results The results of this study revealed that developing expectations of care from family caregivers is positively associated with life satisfaction. Beginning to expect care from non-family caregivers, however, is not associated with life satisfaction. When disaggregating different sources of care by family member type, expecting care from a spouse or daughter(s), but not son(s), is associated with higher life satisfaction. Gender-specific analyses showed that expecting care from daughter(s) is positively associated with life satisfaction among both men and women, whereas expectations of spousal care are associated with only men’s life satisfaction. This study also found suggestive but not conclusive evidence that an association between care expectations from family caregivers and life satisfaction is stronger among older adults with lower education. Discussion Reducing uncertainty about future care may improve older adults’ subjective well-being. Policymakers may consider policies and programs that support family care of the aged, and more fundamentally, encourage family involvement in the lives of older people.

scholarly journals The experiences of caregivers providing home care for terminally ill family members at the end of life: A phenomenological study in Bahrain

2018 ◽  
Vol 6 (3) ◽  
pp. 57
Author(s):  
Fatima Saleh ◽  
Catherine S. O’Neill
Keyword(s):  
Home Care ◽  
Lived Experience ◽  
Family Caregivers ◽  
Nursing Care ◽  
Phenomenological Study ◽  
Family Members ◽  
Terminally Ill ◽  
Well Being ◽  
Care Clinic ◽  
Hermeneutic Phenomenological

Objective: The aim of the study was to explore the lived experience of caregivers providing home care for terminally ill family members, with the objectives of describing their experiences of caring for relatives who are terminally ill with cancer and the needs of home caregiving in Bahrain.Methods: The study adopted a Heideggerian, hermeneutic phenomenological design, with a purposive sample of eight family caregivers. Data was generated through one to one, in-depth interviews and analyzed using Interpretative Phenomenological Analysis.Results: Three main themes emerged from the data: (1) the burden of care, (2) comforts, and (3) coping. The findings showed that the lived experience of home caregiving includes physical, emotional and financial burdens, combined with a lack of professional support. The collective experience was infused with intense emotions because of a lack of structured support, resulting in negative emotions that frequently affected the caregivers’ well-being and their ability to care for the ill person. Nevertheless, caregivers tried to maintain care and comforts for their terminally ill relative in the home. They adopted the home environment, arranged resources to ease caring and provided psychological care. Caregivers utilized three coping mechanisms, faith, personal strategies and distribution of the care responsibilities among family members.Conclusions: Caregivers were not prepared for the commitment and burdens of home care when a family member is terminally ill. A recommendation from the study findings is that training be offered on nursing care before patients discharge. In addition, a reactivation of the palliative care clinic hotline service would support family caregivers. A further recommendation is that home nursing care and hospice services be established to improve homecare services for family caregivers in Bahrain.

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