Supporting Families and Family Caregivers in Palliative Care

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.

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

2003 ◽  
Vol 1 (4) ◽  
pp. 353-365 ◽  
Author(s):  
PETER HUDSON
Keyword(s):  
Palliative Care ◽  
Conceptual Model ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Intervention Development ◽  
World Health ◽  
The Family ◽  
Key Variables ◽  
Supportive Interventions ◽  
The Impact

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.

scholarly journals Improving conditions of service for family caregivers in South Africa

2020 ◽  
Author(s):  
Tebogo Pule ◽  
King Costa
Keyword(s):  
South Africa ◽  
Systematic Review ◽  
Health System ◽  
Family Caregivers ◽  
Healthcare System ◽  
Family Caregiver ◽  
Psychological Needs ◽  
Care Recipient ◽  
Qualitative Systematic Review ◽  
The Family

Introduction: In most cases chronically-ill patients, the disabled and old persons are discharged from healthcare facilities to their families who have inadequate knowledge and skill. They may not be familiar with the kind of care expected to provide. The healthcare system does not provide continuity of care, especially to the family caregiver. The family caregiver is left to attend to the physical, economical, psychological needs of the patient with limited to no support from the healthcare system. This poses a huge challenge and increases the burden for the family caregiver which ends up becoming unbearable to the point where the process is no longer a healthy or viable option for both the caregiver and care recipient. The role of the caregiver in a patient’s health is often overlooked or underestimated in the South African health system, as a result, the caregiver is not recognized as part of the health system policy and financial inclusions. The aim of this study is to conduct a Qualitative Systematic Review of the conditions of service for family caregivers across four dimensions namely: Problems/challenges, burden, intervention and outcome, in South Africa. Method: A Qualitative Systematic Review was conducted, following the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) methodology on Google Scholar database, and retrieved articles from 1994 to 2020. Following Boolean operators, words “AND”, “OR” and “NOT”, were used, to search key terms “family caregiving in South Africa”, “primary caregiving” or “informal caregiving”. Rigor was determined and documented throughout in order to allow readers to access its completeness. Inclusion and exclusion criteria were clearly outlined. Criteria for evaluating primary studies were clearly defined at the beginning of undertaking research. A total of 1810 articles, reports and dissertations were retrieved and only 85 studies were included in the review. Findings and Discussion: Studies were critically appraised using WebQDA software, whereby 198 comments emerged. Both the burden and challenges of caregiving experienced were categorized as problems, which came out 82 times (68%) compounding the role that they play. Other categories that emerged from the studies were Intervention and outcome which came out 53 and 13 times respectively. Interventions and outcome were also consolidated into one group, implying that interventions would have an impact on improving or declining outcome and these were only 32%. Four final themes emerged out of this research.

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

2018 ◽  
Vol 71 (suppl 6) ◽  
pp. 2635-2642 ◽  
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.

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

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.

Respite Tourism for Family Caregivers

2015 ◽  
pp. 218-231
Author(s):  
Robert Holda
Keyword(s):  
Family Member ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Medical Tourism ◽  
Target Market ◽  
Loved One ◽  
Specific Target ◽  
Personal Time ◽  
The Family ◽  
Effects Of Stress

One of the most misunderstood and unappreciated segments of society in relation to medical tourism is the family caregiver; those caring for a loved one who sacrifice their own employment schedule, their personal time for relaxing and recreation, and often and importantly their own health. The purpose of this chapter is to raise awareness of the plight of family caregivers as an issue for medical tourism, the effects of stress and burnout, and the essential need for respite of body, mind, and spirit for these central assistants in the matter of healthcare for patients. Though healthcare and its subset, medical tourism, are frequently perceived as focused on a “patient”, they also encompass many other individuals and organizations. As addressed here, the focus is on the family member caring for a loved one. The intent is to link the concept of medical tourism as an avenue for relaxation and respite to enhance the wellness of this specific target market.

The Fourth Domain of Palliative Care

2018 ◽  
Author(s):  
E. Alessandra Strada
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Psychosocial Interventions ◽  
Social Needs ◽  
Family Meeting ◽  
Management Of Complications ◽  
Palliative Care Setting ◽  
The Family ◽  
The Many ◽  
Clinical Case Scenarios

This chapter proposes palliative psychology competencies in the fourth domain of palliative care, which addresses the social needs of the patient and the family. The unit of care in palliative care is represented by the patient and the family; thus, this chapter highlights the unique needs of family caregivers. The many challenges of caregiving are described by reviewing the literature and using clinical case scenarios. The risk factors and protective factors in caregiving are discussed and incorporated in assessment templates. Psychological and psychosocial interventions that can effectively support family caregivers are discussed. The function, structure, and execution of a family meeting in the palliative care setting is described. This chapter also describes bereavement support for family caregivers and the management of complications of bereavement.

Delirium in Advanced Cancer: A Psychoeducational Intervention for Family Caregivers

2002 ◽  
Vol 18 (4) ◽  
pp. 253-261 ◽  
Author(s):  
Pierre Gagnon ◽  
Cécile Charbonneau ◽  
Pierre Allard ◽  
Colette Soulard ◽  
Serge Dumont ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Terminal Care ◽  
Brain Dysfunction ◽  
Psychoeducational Intervention ◽  
Specific Intervention ◽  
Terminally Ill Cancer Patients ◽  
The Family ◽  
Global Brain

Delirium, a global brain dysfunction, develops frequently in advanced cancer. It is a leading source of distress for family caregivers. Following recommendations from palliative care professionals and caregivers for terminally ill cancer patients, a psychoeducational intervention was implemented in a palliative care hospice to help family caregivers cope with delirium and, eventually, to contribute to early detection. Prior to receiving information on delirium, the majority of the family caregivers did not know what it was or that it could be treated. Few knew that patients in terminal care could become delirious. For caregivers, receiving the intervention increased their confidence they were making good decisions, and the majority felt that all family caregivers should be informed on the risk of delirium (p<0.009). A specific intervention on delirium, tailored to the needs of the family caregivers, seems beneficial for caregivers and for patients.

scholarly journals DO INTRA-PROXY GAPS EMERGE WHEN FAMILY CAREGIVERS ASSESS QOL FROM DIFFERENT PERSPECTIVES?

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S979-S979
Author(s):  
Patricia Egan
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Care Recipient ◽  
Personal Factors ◽  
Care Recipients ◽  
The Family ◽  
Health Factors ◽  
Service Agencies

Abstract Dementia family caregivers are routinely enlisted as proxy assessors of care recipients’ quality of life (QOL). This study explored whether prompts to change perspective during QOL assessment could elicit an intra-proxy gap. The intra-proxy gap was hypothesized to be any difference between those assessments made from the caregiver’s own perspective and those made from the adopted perspective of the care recipient, as the care giver imagined it to be (Pickard and Knight, 2005). Thirty-six dementia family caregivers were recruited from senior service agencies. Subjects completed the Quality of Life-Alzheimer Disease (QOL-AD), Caregiver Version under two conditions: First, from an unprompted perspective and second, from the adopted perspective of the care recipient, as the family caregiver imagined it to be. T-testing indicated intra-proxy gaps emerged for eleven of the QOL-AD’s thirteen domains. For these domains, QOL scores were higher when assessed from the care recipient’s perspective, as the family caregiver imagined it to be. The sample was then repeatedly bisected using caregivers’ personal, relational, and health factors. T-testing indicated that family caregivers’ personal factors were associated with intra-proxy gaps across more QOL-AD domains than their relational or health factors were. Three personal factors, being of older age, having more empathetic concern, and having more empathetic distress, were associated with intra-proxy gaps more frequently than other personal factors were. Findings suggest that clinicians should be alert for perspective employed by proxy assessors and for the possibility of intra-proxy gaps. Recognition of these gaps could help improve interpretation of QOL scores.

scholarly journals CARE SKILL AND OVERLOAD OF THE FAMILY CAREGIVER OF PATIENTS IN CANCER TREATMENT

2020 ◽  
Vol 29 ◽  
Author(s):  
Larissa de Carli Coppetti ◽  
Nara Marilene Oliveira Girardon-Perlini ◽  
Rafaela Andolhe ◽  
Angélica Dalmolin ◽  
Steffani Nikoli Dapper ◽  
...  
Keyword(s):  
Cancer Treatment ◽  
Family Caregivers ◽  
Significant Relationship ◽  
Family Caregiver ◽  
Self Efficacy ◽  
Interpersonal Relationship ◽  
University Hospital ◽  
Cross Sectional ◽  
The Family ◽  
Perception Of Self

ABSTRACT Objective: to analyze the relationship between the characteristics of patients in cancer treatment, their family caregivers, the care provided with the overload, as well as between overload and the care skills. Method: a cross-sectional study conducted at the chemotherapy and radiotherapy services of a university hospital in Rio Grande do Sul (Brazil) from March to August 2017, with 132 family caregivers of patients in cancer treatment. Data was collected by an instrument that characterizes patients, caregivers and care (the Brazilian version of the Caring Ability Inventory) and the Zarit Overload Scale. The following coefficients were used: Spearman correlation, Mann-Whitney or Kruskal-Wallis. Results: there was a significant relationship between the total overload and the patient’s level of dependence (p=0.021) and help from others (p=0.009). The “care impact” factor was significantly related with the patient’s level of dependence (p=0.006), the caregiver’s gender (p=0.035) and the care help (p=0.043). Regarding the “perception of self-efficacy” factor, there was a significant relationship involving the caregiver’s age (p=0.036) and, in the “caregiver expectation” factor, a significant relationship was observed with the care help (p=0.002). There was a significant and negative correlation between the total care skill and the overload factor related to interpersonal relationship (p=0.035); and between the “courage” dimension and the “perception of self-efficacy” (p=0.032) and “interpersonal relationship” (p=0.008) factors. Conclusion: the characteristics of the patient, the caregiver and the care provided influence the overload of the family caregiver, and this overload, in turn, interferes with the care skills. These results should be considered when planning interventions that aim to guide and prepare family caregivers for home care.

scholarly journals Study of Physical, Psychological, and Spiritual Impact of Family Caregiver In Home-Based Stroke Treatment: A Systematic Review

2021 ◽  
Vol 9 (T4) ◽  
pp. 236-239
Author(s):  
Anggi Stiexs ◽  
Nur Chayati
Keyword(s):  
Systematic Review ◽  
Home Care ◽  
Family Caregiver ◽  
Care Home ◽  
Stroke Patients ◽  
Term Care ◽  
Stroke Treatment ◽  
Home Based ◽  
The Family ◽  
Home Based Care

BACKGROUND: Family support during stroke treatment at home is crucial. However, post-stroke patients’ long-term care will be a problem for families, reducing the level of life satisfaction and physical burden for caregivers. Furthermore, families may experience depression. AIM: Analyzing family conditions related to physical, psychological, and spiritual conditions that receive home-based health worker interventions. METHODS: Study implemented systematic review design with Prisma guidelines, initially with the identification of article sources, following by article screening, checking the eligibility of studies then appraised the selected articles. Three databases were used, Ebsco, PubMed, and PROQUEST. Only studies using quasi-experimental, pre-experimental, and RCT designs were included in this study. Furthermore, those articles were published between 2014 until 2019, full type article and conducted anykind of home intervention for stroke patients and/or family member. Keywords that were employed “Stroke, Apoplexy, Cerebrovascular Accident, Vascular Accident, Home Care Services, home care, Home Health Care, Domiciliary Care, Physical, Physics, Psychological Factors, Psychological Side Effects, Psychosocial Factors, Spirituality.” Totally, 19,528 articles were obtained. Finally, only six eligible articles met review requirements. RESULTS: Implementation of home-based care lowered the physical fatigue of the family. In psychological responses showed that home-based care could reduce the incidence of depression and anxiety levels. Another impact was that the family felt helped because patients could more independently do their activities. Furthermore, the family always supported to motivate the patients to do their daily tasks. CONCLUSION: Home-based interventions for stroke patients can reduce depression, anxiety, and fatigue for the family caregiver.

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