6
views
0
recommends
+1 Recommend
0 collections
    0
    shares
      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

      How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study

      Read this article at

      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Aims

          Numerous healthcare decisions are faced by persons with advanced cancer from diagnosis to end-of-life. The family caregiver role in these decisions has focused on being a surrogate decision-maker, however, little is known about the caregiver’s role in supporting upstream patient decision-making. We aimed to describe the roles of family caregivers in assisting community-dwelling advanced cancer patients with healthcare decision-making across settings and contexts.

          Methods

          Qualitative study using one-on-one, semi-structured interviews with community-dwelling persons with metastatic cancer (n = 18) and their family caregivers (n = 20) recruited from outpatient oncology clinics of a large tertiary care academic medical center, between October 2016 and October 2017. Transcribed interviews were analyzed using a thematic analysis approach.

          Findings

          Caregivers averaged 56 years and were mostly female (95%), white (85%), and the patient’s partner/spouse (70%). Patients averaged 58 years and were mostly male (67%) in self-reported “fair” or “poor” health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients’ upstream healthcare decision-making were: 1) seeking information about the cancer, its trajectory, and treatments options; 2) ensuring family and healthcare clinicians have a common understanding of the patient’s treatment plan and condition; 3) facilitating discussions with patients about their values and the framing of their illness; 5) posing “what if” scenarios about current and potential future health states and treatments; 6) addressing collateral decisions (e.g., work arrangements) resulting from medical treatment choices; 6) originating healthcare-related decision points, including decisions about seeking emergency care; and 7) making healthcare decisions for patients who preferred to delegate healthcare decisions to their family caregivers.

          Conclusions

          These findings highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early decision support interventions for family caregivers.

          Related collections

          Most cited references 40

          • Record: found
          • Abstract: found
          • Article: not found

          Social support and patient adherence to medical treatment: a meta-analysis.

          In a review of the literature from 1948 to 2001, 122 studies were found that correlated structural or functional social support with patient adherence to medical regimens. Meta-analyses establish significant average r-effect sizes between adherence and practical, emotional, and unidimensional social support; family cohesiveness and conflict; marital status; and living arrangement of adults. Substantive and methodological variables moderate these effects. Practical support bears the highest correlation with adherence. Adherence is 1.74 times higher in patients from cohesive families and 1.53 times lower in patients from families in conflict. Marital status and living with another person (for adults) increase adherence modestly. A research agenda is recommended to further examine mediators of the relationship between social support and health.
            Bookmark
            • Record: found
            • Abstract: found
            • Article: not found

            A communication strategy and brochure for relatives of patients dying in the ICU.

            There is a need for close communication with relatives of patients dying in the intensive care unit (ICU). We evaluated a format that included a proactive end-of-life conference and a brochure to see whether it could lessen the effects of bereavement. Family members of 126 patients dying in 22 ICUs in France were randomly assigned to the intervention format or to the customary end-of-life conference. Participants were interviewed by telephone 90 days after the death with the use of the Impact of Event Scale (IES; scores range from 0, indicating no symptoms, to 75, indicating severe symptoms related to post-traumatic stress disorder [PTSD]) and the Hospital Anxiety and Depression Scale (HADS; subscale scores range from 0, indicating no distress, to 21, indicating maximum distress). Participants in the intervention group had longer conferences than those in the control group (median, 30 minutes [interquartile range, 19 to 45] vs. 20 minutes [interquartile range, 15 to 30]; P<0.001) and spent more of the time talking (median, 14 minutes [interquartile range, 8 to 20] vs. 5 minutes [interquartile range, 5 to 10]). On day 90, the 56 participants in the intervention group who responded to the telephone interview had a significantly lower median IES score than the 52 participants in the control group (27 vs. 39, P=0.02) and a lower prevalence of PTSD-related symptoms (45% vs. 69%, P=0.01). The median HADS score was also lower in the intervention group (11, vs. 17 in the control group; P=0.004), and symptoms of both anxiety and depression were less prevalent (anxiety, 45% vs. 67%; P=0.02; depression, 29% vs. 56%; P=0.003). Providing relatives of patients who are dying in the ICU with a brochure on bereavement and using a proactive communication strategy that includes longer conferences and more time for family members to talk may lessen the burden of bereavement. (ClinicalTrials.gov number, NCT00331877.) 2007 Massachusetts Medical Society
              Bookmark
              • Record: found
              • Abstract: found
              • Article: not found

              Using reflexivity to optimize teamwork in qualitative research.

              Reflexivity is often described as an individual activity. The authors propose that reflexivity employed as a team activity, through the sharing of reflexive writing (accounts of personal agendas, hidden assumptions, and theoretical definitions) and group discussions about arising issues, can improve the productivity and functioning of qualitative teams and the rigor and quality of the research. The authors review the literature on teamwork, highlighting benefits and pitfalls, and define and discuss the role for reflexivity. They describe their own team and detail how they work together on a project investigating doctor-patient communication about prescribing. The authors present two reflexive tools they have used and show through examples how they have influenced the effectiveness of their team in terms of process, quality, and outcome.
                Bookmark

                Author and article information

                Contributors
                Role: ConceptualizationRole: Data curationRole: Formal analysisRole: Funding acquisitionRole: InvestigationRole: MethodologyRole: Project administrationRole: ResourcesRole: VisualizationRole: Writing – original draftRole: Writing – review & editing
                Role: Formal analysisRole: Writing – original draftRole: Writing – review & editing
                Role: Formal analysisRole: Writing – original draftRole: Writing – review & editing
                Role: Writing – review & editing
                Role: Data curationRole: Project administrationRole: ResourcesRole: SupervisionRole: Writing – review & editing
                Role: InvestigationRole: Project administrationRole: ResourcesRole: SupervisionRole: Writing – review & editing
                Role: Writing – review & editing
                Role: Project administrationRole: Writing – review & editing
                Role: ConceptualizationRole: Funding acquisitionRole: SupervisionRole: Writing – review & editing
                Role: ConceptualizationRole: Funding acquisitionRole: SupervisionRole: Writing – review & editing
                Role: ConceptualizationRole: Funding acquisitionRole: SupervisionRole: Writing – review & editing
                Role: Editor
                Journal
                PLoS One
                PLoS ONE
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                13 March 2019
                2019
                : 14
                : 3
                Affiliations
                [1 ] School of Nursing, University of Alabama at Birmingham, Birmingham, Alabama, United States of America
                [2 ] School of Medicine, University of Alabama at Birmingham, Birmingham, Alabama, United States of America
                [3 ] Geisel School of Medicine, Dartmouth College, Hanover, New Hampshire, United States of America
                [4 ] School of Health Professions, University of Alabama at Birmingham, Birmingham, Alabama, United States of America
                [5 ] Center for Innovation in Health Equity Research, University of Tennessee Health Science Center, Memphis, Tennessee, United States of America
                Nord University, NORWAY
                Author notes

                Competing Interests: The authors have declared that no competing interests exist.

                Article
                PONE-D-18-31964
                10.1371/journal.pone.0212967
                6415885
                30865681
                © 2019 Dionne-Odom et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                Page count
                Figures: 0, Tables: 2, Pages: 15
                Product
                Funding
                Funded by: National Palliative Care Research Center
                Award Recipient :
                Funded by: National Institute of Nursing Research
                Award ID: R00NR015903
                Award Recipient :
                This research was funded by the National Palliative Care Research Center ( www.npcrc.org) Junior Faculty Career Development Award and the National Institute of Nursing Research ( www.ninr.nih.gov) (R00NR015903 to JND-O). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Research Article
                Biology and Life Sciences
                Neuroscience
                Cognitive Science
                Cognitive Psychology
                Decision Making
                Biology and Life Sciences
                Psychology
                Cognitive Psychology
                Decision Making
                Social Sciences
                Psychology
                Cognitive Psychology
                Decision Making
                Biology and Life Sciences
                Neuroscience
                Cognitive Science
                Cognition
                Decision Making
                Medicine and Health Sciences
                Health Care
                Patients
                Medicine and Health Sciences
                Oncology
                Cancer Treatment
                Research and Analysis Methods
                Research Design
                Qualitative Studies
                Medicine and Health Sciences
                Oncology
                Medicine and Health Sciences
                Diagnostic Medicine
                Cancer Detection and Diagnosis
                Medicine and Health Sciences
                Oncology
                Cancer Detection and Diagnosis
                Medicine and Health Sciences
                Health Care
                Health Care Facilities
                Engineering and Technology
                Management Engineering
                Risk Management
                Insurance
                Custom metadata
                In order to protect interviewee privacy, data cannot be shared publicly. Data are available by request to the corresponding author or by contacting the University of Alabama at Birmingham Institutional Review Board for researchers who meet the criteria for access to confidential data. Interested researchers can contact the UAB IRB at 205-934-3789.

                Uncategorized

                Comments

                Comment on this article