A conceptual model and key variables for guiding supportive 
interventions for family caregivers of people receiving palliative 
care

According to the World Health Organization, the patient and family should be viewed as the “unit of care” when palliative care is required. Therefore family caregivers should receive optimal supportive care from health professionals. However, the impact of supporting a dying relative is frequently described as having negative physical and psychosocial sequalae. Furthermore, family caregivers consistently report unmet needs and there has been a dearth of rigorous supportive interventions published. In addition, comprehensive conceptual frameworks to navigate the family caregiver experience and guide intervention development are lacking. This article draws on Lazarus and Folkman's seminal work on the transactional stress and coping framework to present a conceptual model specific to family caregivers of patients receiving palliative care. A comprehensive account of key variables to aid understanding of the family caregiver experience and intervention design is provided.

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Supporting Families and Family Caregivers in Palliative Care

Oxford Textbook of Palliative Nursing ◽

10.1093/med/9780190862374.003.0032 ◽

2019 ◽

pp. 405-419

Author(s):

Kelli I. Stajduhar ◽

J. Nicholas Dionne-Odom

Keyword(s):

Palliative Care ◽

Best Practices ◽

Family Caregivers ◽

Healthcare System ◽

Family Caregiver ◽

Care Home ◽

Community Resources ◽

Vital Part ◽

The Family ◽

Specialized Unit

This chapter investigates best practices for nurses who are involved in supporting families and family caregivers in palliative care. It views the family as a specialized unit of care which contributes to the healthcare system in a substantive way. There are significant implications for families and family caregivers in taking on these responsibilities, and nurses play a vital part in maintaining the integrity and health of the family and family caregiver. With a focus on palliative care, specific suggestions are made for nurses’ assessments in identifying needs and providing subsequent interventions. Particular sites of care (home, acute, etc.) and implications arising from a range of disease categories are discussed. The chapter concludes with recommendations for identifying community resources.

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Caring for the Family Caregiver

10.1093/med/9780190055233.001.0001 ◽

2020 ◽

Cited By ~ 1

Author(s):

Elaine Wittenberg ◽

Joy Goldsmith ◽

Sandra L. Ragan ◽

Terri Ann Parnell

Keyword(s):

Palliative Care ◽

Health Literacy ◽

Family Caregiver ◽

Communication Theory ◽

Family System ◽

Interdisciplinary Approach ◽

Current Data ◽

Theory And Practice ◽

The Family ◽

The Impact

This remarkable work reveals the plight of the family caregiver in chronic illness through the prism of communication. Examining the high cost and poorly addressed exigencies of the caregiver, including health literacy, palliative care, and health outcomes, Elaine Wittenberg, Joy V. Goldsmith, Sandra L. Ragan, and Terri Ann Parnell use an interdisciplinary approach in an effort to identify the impact of communication and its burdens on the caregiver. This team of scholars present four caregiver profiles, the Manager, Carrier, Partner, and Lone caregiver, each emerging from a family system with different patterns of conversational sharing and expectations of conformity. This volume presents a picture of the costs and losses for caregivers that go unseen and remain invisible for stakeholders in the healthcare experience. By synthesizing current data assessing the experiences of caregivers, as well as integrating the narrative experiences of a range of caregivers living through a variety of illnesses and their specific demands, the writers deliver an unflinching gaze at the journey of the caregiver. With an author team comprised of three health communication researchers and a nurse and health literacy expert, this volume integrates literature addressing caregiver needs and burdens, communication theory and practice, and palliative care and health literacy research to present the groundbreaking concept of the caregiver types and an innovative set of support resources to facilitate improved pathways to better care for the caregiver. Their engaging and rigorous writing style integrates the real stories of caregivers across the scope of the book connecting the reader with the people inside the pages and making the book essential for providers, students, clinicians, policymakers, and family caregivers alike.

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Spiritual needs experienced by the patient's family caregiver under Oncology palliative care

Revista Brasileira de Enfermagem ◽

10.1590/0034-7167-2017-0873 ◽

2018 ◽

Vol 71 (suppl 6) ◽

pp. 2635-2642 ◽

Cited By ~ 4

Author(s):

Renata Carla Nencetti Pereira Rocha ◽

Eliane Ramos Pereira ◽

Rose Mary Costa Rosa Andrade Silva ◽

Angelica Yolanda Bueno Bejarano Vale de Medeiros ◽

Sueli Maria Refrande ◽

...

Keyword(s):

Palliative Care ◽

Qualitative Study ◽

Family Caregivers ◽

Coping Strategy ◽

Family Caregiver ◽

Spiritual Needs ◽

Phenomenology Of Perception ◽

The Family ◽

The Moment ◽

Phenomenological Interview

ABSTRACT Objective: To understand the spiritual needs of the patients' family caregiver under Oncology palliative care. Method: A descriptive, qualitative study with 20 family caregivers of patients hospitalized in an Oncology palliative unit. The data were collected through a phenomenological interview, and analyzed by the method of Amadeo Giorgi supported in the Merleau-Ponty's Phenomenology of Perception. Results: The categories were unveiled: "Spirituality as a foundation for life"; "Spiritual needs sublimated by the family caregiver"; and "Care expected by the nurse". Conclusion: Family caregivers appropriate spirituality as a coping strategy and meeting the purpose and meaning of the moment experienced. It is profitable for the nurse to contemplate the spiritual needs of the caregiver in order to provide a guided assistance in the humanization of care and comprehensive care. Therefore, there is a need for new studies that address this dimension to the family caregiver in the field of Oncology, since this care is incipient by the nurse.

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Family caregiver emotional distress in advanced cancer: the DME-C scale psychometric properties

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2020-002608 ◽

2020 ◽

pp. bmjspcare-2020-002608

Author(s):

Joaquín T Limonero ◽

Jorge Maté-Méndez ◽

María José Gómez-Romero ◽

Dolors Mateo-Ortega ◽

Jesús González-Barboteo ◽

...

Keyword(s):

Psychometric Properties ◽

End Of Life ◽

Family Caregivers ◽

Advanced Cancer ◽

Emotional Distress ◽

Family Caregiver ◽

Screening Tools ◽

Anxiety And Depression ◽

The Family ◽

End Stage

BackgroundFamily caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools.AimThis study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC).DesignMulticentre, cross-sectional study.Settings/participantsFamily caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA).Results138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach’s alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale.ConclusionsThe DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.

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Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

Innovation in Aging ◽

10.1093/geroni/igaa057.500 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 153-154

Author(s):

Afeez Hazzan

Keyword(s):

Quality Of Life ◽

Quality Of Care ◽

Older People ◽

Family Caregivers ◽

Family Caregiver ◽

Well Being ◽

The United States ◽

People With Dementia ◽

The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

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Quality of Care Provided by Family Caregivers of Older People With Dementia: Measurement and Interpretations

Innovation in Aging ◽

10.1093/geroni/igaa057.496 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 152-152

Author(s):

Afeez Hazzan

Keyword(s):

Quality Of Care ◽

Older People ◽

Family Caregivers ◽

Family Caregiver ◽

Primary Reason ◽

People With Dementia ◽

High Level ◽

The Impact ◽

The Relationship

Abstract Family caregivers of older people living with dementia are relatives, friends, or neighbors who provide assistance related to this condition, but who are unpaid for the services they provide. Although caregiving could be personally rewarding, many caregivers report a high level of strain. Compared to caregivers of older adults who do not have dementia, family caregivers of older people living with dementia report lower quality-of-life (QoL). In a published systematic review examining the relationship between family caregiver QoL and the quality of care provided, only one study was found to be somewhat relevant. The study suggested that the primary reason for an absence of research into the link between family caregiver QoL and quality of care was the absence of a questionnaire for measuring quality of care in dementia. Therefore, any attempt to investigate the impact of caregiver QoL on the care provided to older people with dementia must first address the lack of an instrument to measure quality of care. To address this issue, we interviewed approximately 20 family caregivers in order to elicit feedback on measurements and interpretation of the quality of care provided by family caregivers of older people living with dementia. Content analysis of the interview transcripts revealed that the quality of relationships with family, caregiver availability to provide or supervise care, and availability of paid or volunteer help are important for the quality of care provided. These results have important implications, particularly for the development of an instrument to measure quality of care in dementia.

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Protective preparation: a process central to family caregivers of persons with mild cognitive impairment

International Psychogeriatrics ◽

10.1017/s1041610217001764 ◽

2017 ◽

Vol 30 (3) ◽

pp. 375-384 ◽

Cited By ~ 3

Author(s):

Ching-Lin Wang ◽

Li-Min Kuo ◽

Yi-Chen Chiu ◽

Hsiu-Li Huang ◽

Huei-Ling Huang ◽

...

Keyword(s):

Cognitive Impairment ◽

Mild Cognitive Impairment ◽

Family Caregivers ◽

Caregiver Burden ◽

Family Caregiving ◽

Healthcare Providers ◽

Theory Approach ◽

Face To Face ◽

The Family ◽

The Impact

ABSTRACTBackground:To develop a theoretical model explaining the longitudinal changes in the caregiving process for family caregivers of persons with mild cognitive impairment (MCI) in Taiwan.Methods:A longitudinal, grounded theory approach using in-depth face-to-face interviews and an open-ended interview guide. We conducted 42 interviews over a two-year period; each participant was interviewed at least once every six months. All participants were interviewed in their home. The participants total of 13 family caregivers of persons with MCI.Results:One core theme emerged: “protective preparation.” This reflected the family caregiving process of preparation for a further decline in cognitive function, and protection from the impact of low self-esteem, accidents, and symptoms of comorbidities for the family member with MCI. Protective preparation contained three components: ambivalent normalization, vigilant preparation, and protective management.Conclusions:Interventions to help family caregivers manage the changes in persons with MCI can reduce caregiver burden. Our findings could provide a knowledge base for use by healthcare providers to develop and implement strategies to reduce caregiver burden for family caregivers of persons with MCI.

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Percepção da sobrecarga familiar nos cuidados ao paciente psiquiátrico crônico

Enfermagem em Foco ◽

10.21675/2357-707x.2011.v2.n4.193 ◽

2011 ◽

Vol 2 (4) ◽

pp. 245-247

Author(s):

Mohema Duarte de Oliveira ◽

Mariana Ferreira de Sá ◽

Maria Luciene Rocha

Keyword(s):

Mental Illness ◽

Family Caregivers ◽

Literature Search ◽

Psychiatric Patients ◽

Family Burden ◽

The Family ◽

The Impact ◽

Chronic Psychiatric Patients

Objetivos: avaliar o impacto da sobrecarga familiar nos cuidados ao paciente psiquiátrico crônico. Metodologia: pesquisa bibliográfica por meio de referências publicadas em documentos, livros, revistas, artigos científicos, internet, ou seja, aborda tudo o que foi publicado sobre o tema proposto. Resultados: a convivência com a pessoa acometida por uma doença mental é desgastante para o familiar e, muitas vezes, há dificuldade de compreensão dos sintomas apresentados pelo doente. Conclusão: há a necessidade de desenvolver programas de informação, orientação e apoio aos familiares dos pacientes psiquiátricos.Descritores: Sobrecarga, Familiares Cuidadores, Pacientes Psiquiátricos.Perception of the familiar overload in the cares to the chronic psychiatric patientAims: to assess the impact of family burden in caring for chronic psychiatric patients. Methodology: literature search by means of references in published papers, books, magazines, papers, and internet, that is, it approaches all publishings on the theme. Results: living with the person affected by mental illness is stressful for the family and sometimes there is difficulty in understanding the symptoms presented by the patient. Conclusion: there is a need to develop information, guidance and support to families of psychiatric patients.Descriptors: Overload, Family Caregivers, Psychiatric Patients.La percepción de la carga familiar en el cuidado de pacientes psiquiátricos crónicosObjectivos: Evaluar el impacto de la carga familiar en el cuidado de pacientes psiquiátricos crónicos. Metodología: la literatura a través de referencias de artículos publicados, libros, revistas, periódicos, internet, o las direcciones de lo que se ha publicado sobre el tema. Resultados: la convivencia con la persona afectada por una enfermedad mental es muy estresante para la familia y con frecuencia hay dificultad en la comprensión de los síntomas que presenta el paciente. Conclusión: Hay una necesidad de desarrollar programas de información, orientación y apoyo a las familias de los pacientes psiquiátricos.Descriptores: Sobrecarga, Los Cuidadores Familiares, Los Pacientes Psiquiátricos.

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PSYCHOLOGICAL PROBLEMS OF FAMILY CAREGIVERS OF PATIENTS WITH SCHIZOPHRENIA

10.36106/paripex/2103752 ◽

2020 ◽

pp. 43-44

Author(s):

Sejal Macwan ◽

Ninad Jhala

Keyword(s):

Mental Health ◽

Mental Illness ◽

Family Caregivers ◽

Psychological Problems ◽

World Health ◽

World Health Report ◽

Care Givers ◽

Care Giving ◽

Health Report ◽

The Family

Approximately 24 million people worldwide experiencing schizophrenia (The World Health Report, 2001). Several people with mental disorder have to rely on support of family and friends to help them in their day-to-day happenings. In that era, caregivers are at risk for physical and mental health dilemma.1 Caring for a person with any mental illness often creates physical, emotional dilemma among the family caregivers more than they think. That is why it is also essential to rationalize that issue too. Family care givers of patients with any mental illness have different perspectives and coping strategies about the situation that may lead to feeling of sadness, loneliness, helplessness, hopeless at a variance among the care givers. OBJECTIVES: • To study levels of psychological problems faced by the family caregivers of patients with schizophrenia. • To study association between demographic variables and levels of psychological problems of family caregivers with schizophrenia. METHOD: A descriptive study was carried out to examine the psychological problems faced by family caregivers of patients with schizophrenia. 200 family caregivers were selected by applying stratified systematic sampling method from the government hospitals of mental health of Gujarat state with a criterion of minimum facility of 100 beds. A self-structured interview schedule was designed for study purpose by referring the Burden Assessment Tool of Thara et.al (1998) and Zarit Burden Interview. RESULT: Majority of the respondents (51%) feel anxious, depressed and frustrated due to caregiving responsibility. Majority of the respondents (52.5%) believed that care giving responsibility is mentally tiring for the family caregivers. Majority of the respondents (40.5%) agree with the statement that their contacts with family & friends have lessened due to the illness of care receiver.

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