Dataset Information

Resilience, preparedness, and distress among family caregivers of patients with advanced cancer.

ABSTRACT:

Objective

Resilience has been proposed as a primary factor in how many family caregivers of patients with advanced cancer are able to resist psychological strain and perform effectively in the role while bearing a high load of caregiving tasks. To evaluate this hypothesis, we examined whether self-perceived resilience is associated with distress (anxiety and depressive symptoms), caregiver preparedness, and readiness for surrogate decision-making among a racially diverse sample of family caregivers of patients with newly diagnosed advanced cancer.

Methods

Secondary analysis of baseline data from two small-scale, pilot clinical trials that both recruited family caregivers of patients with newly diagnosed advanced cancer. Using multivariable linear regression, we analyzed relationships of resilience as a predictor of mood, caregiving preparedness, and readiness for surrogate decision-making, controlling for sociodemographics.

Results

Caregiver participants (N = 112) were mean 56 years of age and mostly female (76%), the patient's spouse/partner (52%), and White (56%) or African-American/Black (43%). After controlling for demographics, standardized results indicated that higher resilience was relevantly associated with higher caregiver preparedness (beta = .46, p < .001), higher readiness for surrogate decision-making (beta = .20, p < .05) and lower anxiety (beta = - .19, p < .05), and depressive symptoms (beta = - .20, p < .05).

Conclusions

These results suggest that resilience may be critical to caregivers' abilities to manage stress, be effective sources of support to patients, and feel ready to make future medical decisions on behalf of patients. Future work should explore and clinicians should consider whether resilience can be enhanced in cancer caregivers to optimize their well-being and ability to perform in the caregiving and surrogate decision-making roles.

SUBMITTER: Dionne-Odom JN

PROVIDER: S-EPMC9733586 | biostudies-literature | 2021 Nov

REPOSITORIES: biostudies-literature

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Publications

Resilience, preparedness, and distress among family caregivers of patients with advanced cancer.

Dionne-Odom J Nicholas JN Azuero Andres A Taylor Richard A RA Wells Rachel D RD Hendricks Bailey A BA Bechthold Avery C AC Reed Rhiannon D RD Harrell Erin R ER Dosse Chinara K CK Engler Sally S McKie Peggy P Ejem Deborah D Bakitas Marie A MA Rosenberg Abby R AR

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 20210524 11

<h4>Objective</h4>Resilience has been proposed as a primary factor in how many family caregivers of patients with advanced cancer are able to resist psychological strain and perform effectively in the role while bearing a high load of caregiving tasks. To evaluate this hypothesis, we examined whether self-perceived resilience is associated with distress (anxiety and depressive symptoms), caregiver preparedness, and readiness for surrogate decision-making among a racially diverse sample of family ...[more]

PMID: 34031751

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Project description:BackgroundCancer is highly prevalent worldwide. Family resilience is a positive variable that helps families burdened by advanced cancer to cope effectively. This study aimed to describe the family resilience of advanced cancer patients and caregivers in dyads and identify its influencing factors at the individual and dyadic levels.MethodsThis multisite cross-sectional study was conducted in oncology units in five tertiary hospitals in China. A total of 270 advanced cancer patient-caregiver dyads were recruited between June 2020 and March 2021. Patients' and caregivers' family resilience was measured by the Family Resilience Assessment Scale. Data on potential influencing factors, including demographic and disease-related characteristics as well as family sense of coherence, psychological resilience, perceived social support, symptom burden, and caregiver burden, were collected. Multilevel modeling analysis was adopted to control for the interdependence of the dyads.ResultsA total of 241 dyads were included in the data analysis. The mean ages of patients and caregivers were 53.96 (SD 15.37) and 45.18 (SD 13.79) years, respectively. Most caregivers were spouses and adult children (45.6% and 39.0%, respectively). Patients reported a higher mean family resilience score than caregivers (152.56 vs. 149.87, respectively). Undergoing fewer than two types of treatment and a lower symptom burden of patients predicted higher patient (B = -9.702, -0.134, respectively) and caregiver (B = -5.462, -0.096, respectively) family resilience. Patients also reported higher family resilience under the following conditions: 1) were on a medical insurance plan other than the new rural cooperative medical system (B = 6.089), 2) had a better family sense of coherence (B = 0.415), 3) whose caregivers were unmarried (B = 8.618), perceived lower social support (B = -0.145) and higher psychological resilience (B = 0.313). Caregivers who were ≤ 44 years old (B = -3.221), had similar previous caregiving experience (B = 7.706), and had a stronger family sense of coherence (B = 0.391) reported higher family resilience.ConclusionsOur findings highlight the importance of adopting a dyadic approach when caring for advanced cancer patients and their caregivers. Dyadic longitudinal research is suggested to discover more modifiable factors of family resilience and tailored interventions are needed to obtain optimal dyadic outcomes.

Project description:IntroductionAt the end of life, patients with advanced cancer and their informal caregivers may confront multiple existential concerns. Despite the strong potential to alleviate existential distress through psychosocial interventions, existential distress and its impact on healthcare outcomes have not yet been studied systematically. We aim to investigate the frequency, longitudinal trajectory and predictive impact of existential distress on end-of-life outcomes. We further aim to determine patients' and caregivers' specific need for and utilisation of psychosocial support for existential distress.MethodsThis longitudinal cohort study will consecutively recruit 500 patients with advanced cancer and 500 caregivers from oncological outpatient and inpatient clinics. Participants will complete self-report questionnaires (sociodemographic and disease-related characteristics, existential distress, end-of-life outcomes, resources and support needs) at five points of assessment (at baseline and after 3, 6, 9 and 12 months). At baseline and 6-month follow-up, we will conduct structured diagnostic interviews to assess mental disorders. Statistical analyses will include descriptive statistics to determine the prevalence of existential distress, mental disorders and end-of-life outcomes; multiple linear and logistic regression analyses to calculate the predictive impact of existential distress on end-of-life outcomes; and growth mixture models to analyse longitudinal trajectories of existential distress.DiscussionThis study will provide comprehensive knowledge about patients' and caregivers' existential concerns. The longitudinal empirical data will allow for conclusions concerning the frequency and course of existential distress throughout 1 year. This important extension of existing cross-sectional research will contribute to further develop targeted psychosocial interventions. Profiles of existential distress may be applied by clinicians from multiple professions and help to address existential concerns effectively.Ethics and disseminationThe study was approved by the institutional research ethics committee (reference number LPEK-0177). Results will be presented at scientific conferences and published in peer-reviewed journals. Other forms of dissemination will include sharing results on the psychometric properties of the structured demoralisation interview with international research groups and communication with healthcare professionals providing psychosocial treatment for patients and caregivers. Following scientific standards, our progress will be regularly updated on ClinicalTrials.gov.Trial registration numberNCT04600206.

Project description:BackgroundWe previously developed a mobile health (mHealth) app (Roadmap) to promote the resilience of family caregivers during the acute phases of care in patients undergoing hematopoietic cell transplantation (HCT).ObjectiveThis study explored users' perspectives on the uptake of Roadmap's multicomponent features and the app's utility in promoting resilience.MethodsFifteen participants were randomized to the full version of the app that included resilience-building activities and the other 15 were randomized to the control version that included a limited view of the app (i.e., without any resilience-building activities). They were instructed to use the app for 120 days. Semistructured qualitative interviews were then conducted with users as part of an ongoing, larger Roadmap study (NCT04094844). During the interview, caregiver participants were asked about their overall experiences with the app, frequency of use, features used, facilitators of and barriers to use, and their perspectives on its utility in promoting resilience. Data were professionally transcribed, coded, and categorized through content analysis.ResultsInterviews were conducted with 30 participants, which included 23 females and 7 males. The median age of the population was 58 years (range, 23-82). The four main themes that emerged included app use, ease of use, user experiences, and ability to foster resilience. The subthemes identified related to facilitators (convenience and not harmful), barriers (caregiver burden and being too overwhelmed during the acute phases of HCT care), resilience (optimism/positivity and self-care), and app design improvements (personalization and notifications/reminders).ConclusionThe qualitative evaluation provided insights into which components were utilized and how one, or a combination of the multicomponent features, may be enhancing users' experiences. Lessons learned suggest that the Roadmap app contributed to promoting resilience during the acute phases of HCT care. Nonetheless, features that provided enhanced personalization may further improve longer-term engagement.

Dataset Information

Resilience, preparedness, and distress among family caregivers of patients with advanced cancer.

Objective

Methods

Results

Conclusions

Publications

Resilience, preparedness, and distress among family caregivers of patients with advanced cancer.

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