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When chemotherapy fails: Emotionally charged experiences faced by family caregivers of patients with advanced cancer.

ABSTRACT: OBJECTIVE:To explore family caregivers' emotional experiences while caring for patients with advanced cancer and navigating distressing information, awareness of dying, and difficult decisions. METHODS:Qualitative descriptive study of semi-structured interviews with 92 bereaved caregivers of patients with advanced cancer. Interviews explored caregivers' experiences as patients transitioned out of active cancer treatment and neared the end of life. RESULTS:Included in caregivers' characterization of this transition time were three particularly emotionally charged experiences. The first occurred when caregivers felt jolted into awareness that patients were dying.They were startled to realize that patients would die sooner than expected; some expressed frustration that they had not been adequately warned. In the second, caregivers felt conflicted when involved in decisions that pitted patients' preferences against what caregivers felt patients needed, resulting in ambivalence, guilt, and grief. Thirdly, caregivers who felt they did their best for patients expressed fulfillment and gratitude. CONCLUSION:Caregivers of patients with advanced cancer face unique, emotionally charged experiences that can lead to distress and affect care at the end of life. PRACTICE IMPLICATIONS:Awareness of these situations may help oncology teams to provide sufficient guidance and support, partner with caregivers to clarify patients' needs, and deliver higher quality care.

SUBMITTER: Rodenbach RA

PROVIDER: S-EPMC6491225 | biostudies-literature | 2019 May

REPOSITORIES: biostudies-literature

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When chemotherapy fails: Emotionally charged experiences faced by family caregivers of patients with advanced cancer.

Rodenbach Rachel A RA Norton Sally A SA Wittink Marsha N MN Mohile Supriya S Prigerson Holly G HG Duberstein Paul R PR Epstein Ronald M RM

Patient education and counseling 20181212 5

<h4>Objective</h4>To explore family caregivers' emotional experiences while caring for patients with advanced cancer and navigating distressing information, awareness of dying, and difficult decisions.<h4>Methods</h4>Qualitative descriptive study of semi-structured interviews with 92 bereaved caregivers of patients with advanced cancer. Interviews explored caregivers' experiences as patients transitioned out of active cancer treatment and neared the end of life.<h4>Results</h4>Included in caregi ...[more]

PMID: 30579772

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Project description:Stigma associated with schizophrenia significantly affects family caregivers, yet few studies have examined the nature and determinants of family stigma and its relationship to their knowledge about the condition. This paper describes the experiences and determinants of stigma reported by the primary caregivers of people living with schizophrenia (PLS) in India. The study used mixed methods and was nested in a randomised controlled trial of community care for people with schizophrenia. Between November 2009 and October 2010, data on caregiver stigma and functional outcomes were collected from a sample of 282 PLS-caregiver dyads. In addition, 36 in-depth-interviews were conducted with caregivers. Quantitative findings indicate that 'high caregiver stigma' was reported by a significant minority of caregivers (21%) and that many felt uncomfortable to disclose their family member's condition (45%). Caregiver stigma was independently associated with higher levels of positive symptoms of schizophrenia, higher levels of disability, younger PLS age, household education at secondary school level and research site. Knowledge about schizophrenia was not associated with caregiver stigma. Qualitative data illustrate the various ways in which stigma affected the lives of family caregivers and reveal relevant links between caregiver-stigma related themes ('others finding out', 'negative reactions' and 'negative feelings and views about the self') and other themes in the data. Findings highlight the need for interventions that address both the needs of PLS and their family caregivers. Qualitative data also illustrate the complexities surrounding the relationship between knowledge and stigma and suggest that providing 'knowledge about schizophrenia' may influence the process of stigmatisation in both positive and negative ways. We posit that educational interventions need to consider context-specific factors when choosing anti-stigma-messages to be conveyed. Our findings suggest that messages such as 'recovery is possible' and 'no-one is to blame' may be more helpful than focusing on bio-medical knowledge alone.

Project description:BackgroundSeveral studies have characterized the experiences of family members caring for patients undergoing chemotherapy; however, information about the experiences of older spousal caregivers with intensive caregiving burdens is unclear. Recently, more older patients have been diagnosed with cancer due to the aging population worldwide. Therefore, this study evaluated the patterns in the experiences of older spousal caregivers of patients undergoing palliative chemotherapy for advanced cancer.MethodsQualitative research using semi-structured interviews was used in this study involving 10 older spousal caregivers of patients undergoing palliative chemotherapy at a hospital providing advanced cancer care in Japan. The data obtained were analyzed qualitatively and inductively using thematic analysis by Braun and Clarke.ResultsFour themes were identified from the narratives of the participants in this study. The first theme was "getting used to living with the disease," indicating that the older spouses gradually became accustomed to living with the patient through continued caregiving. The second theme was "deepening view of life and death," indicating that the older spouses' views of life and death were deepened by being confronted with patients' quality of life until death. The third theme was "anxious about the future," indicating the fear regarding the patient's progressive diseases and anxiety pertaining to continuing care for the patient while dealing with their health problems. The final theme was "desire for a better rest of life," indicating that the couple felt their bond was strengthened through caregiving and wishes to live well for the rest of their lives.ConclusionsThe patterns in the experience of older spousal caregivers caring for patients undergoing palliative chemotherapy indicated an aspect of rebuilding their lives as they became accustomed to caregiving, while strengthening their marital bond. The caregiving process involved a mix of emotions, including anxiety about the spousal caregiver's health problems worsening. However, the caregivers recognized the value of their remaining time. Therefore, they had deep concern for the patient's comfort, concealing their feelings so that the patient would feel comfortable. This study can contribute to understanding the challenges faced and support needed by older spousal caregivers.

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When chemotherapy fails: Emotionally charged experiences faced by family caregivers of patients with advanced cancer.

Publications

When chemotherapy fails: Emotionally charged experiences faced by family caregivers of patients with advanced cancer.

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