Caregiver speaks: a randomized controlled trial of a storytelling intervention for hospice family caregivers of persons with dementia.
Background and Objectives Family caregivers of persons living with dementia experience significant emotional distress during end-of-life care and bereavement. Interventions supporting meaning-making and social connection may help mitigate anxiety and depression, and support caregivers' adjustment du...
| Publicado en: | Gerontologist Vol. 66; no. 7; pp. 1 - 14 |
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| Autores principales: | , , , , , , , , |
| Formato: | Artículo |
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Oxford University Press / USA
Jul2026
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| Materias: | |
| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ssf&AN=195281444&site=ehost-live header: @attributes: shortDbName: ssf uiTerm: 195281444 longDbName: Social Sciences Full Text (H.W. Wilson) uiTag: AN controlInfo: bkinfo: jinfo: jid: 00169013 GET jtl: Gerontologist issn: 00169013 maglogo: N pubinfo: dt: Jul2026 vid: 66 iid: 7 pid: 622 pub: Oxford University Press / USA artinfo: ui: 195281444 10.1093/geront/gnag117 ppf: 1 ppct: 13 formats: tig: atl: Caregiver speaks: a randomized controlled trial of a storytelling intervention for hospice family caregivers of persons with dementia. aug: au: Rolbiecki, Abigail J Pitzer, Kyle Benson, Jacquelyn J Washington, Karla T Teti, Michelle Kruse, Robin L Mehr, David R Smith, Jamie Oliver, Debra affil: Institute for Research in the Social Sciences, Colorado State University, Fort Collins, Colorado, United StatesDivision of Geriatrics, University of Colorado Anschutz Medical Campus, Aurora, Colorado, United States School of Medicine in St. Louis, Department of Medicine, Division of Palliative Medicine, Washington University, St. Louis, Missouri, United States Department of Public Health, University of Missouri, Columbia, Missouri, United States School of Medicine, Department of Family and Community Medicine, University of Missouri, Columbia, Missouri, United States School of Medicine in St. Louis, Department of Medicine, Division of Palliative Medicine, Washington University, St. Louis, Missouri, United StatesGoldfarb School of Nursing at Barnes-Jewish College, St. Louis, Missouri, United States su: United States Prevention of mental depression Social media Randomized controlled trials Psychological adaptation Families Storytelling Psychology of caregivers Grief Social support Psychological tests Hospice care Anxiety prevention Research funding Statistical sampling Fisher exact test Questionnaires Treatment effectiveness Photography Mann Whitney U Test Descriptive statistics Intraclass correlation Dementia Data analysis software Dementia patients sug: subj: Prevention of mental depression Social media Randomized controlled trials Psychological adaptation Families Storytelling Psychology of caregivers Grief Social support Psychological tests Hospice care United States Nursing Care Facilities (Skilled Nursing Facilities) Home Health Care Services Marketing Research and Public Opinion Polling Other Individual and Family Services Anxiety prevention Research funding Statistical sampling Fisher exact test Questionnaires Treatment effectiveness Photography Mann Whitney U Test Descriptive statistics Intraclass correlation Dementia Data analysis software Dementia patients keyword: anxiety arm bereavement caregivers copyrightHolder:The Gerontological Society of America copyrightYear:2026 depressive disorders family caregivers grief hospice https://dx.doi.org/10.1093/geront/gnag117 inLanguage:en publisher:Oxford University Press sameAs:https://pubmed.ncbi.nlm.nih.gov/42185076/ Storytelling intervention anxiety arm bereavement caregivers copyrightHolder:The Gerontological Society of America copyrightYear:2026 depressive disorders family caregivers grief hospice https://dx.doi.org/10.1093/geront/gnag117 inLanguage:en publisher:Oxford University Press sameAs:https://pubmed.ncbi.nlm.nih.gov/42185076/ Storytelling intervention ab: Background and Objectives Family caregivers of persons living with dementia experience significant emotional distress during end-of-life care and bereavement. Interventions supporting meaning-making and social connection may help mitigate anxiety and depression, and support caregivers' adjustment during bereavement. Research Design and Methods This randomized controlled trial evaluated Caregiver Speaks, a storytelling intervention for family caregivers of persons living with dementia. Participants from 5 hospices in the Midwestern and Northeastern United States were randomized 1:1 to intervention or control. Caregivers in the intervention joined private Facebook groups, engaging in structured photo-elicitation storytelling, and transitioned from active caregiving groups to bereavement groups post-loss. Controls received usual hospice bereavement care. Of 425 randomized caregivers (210 intervention, 214 control), 424 caregivers completed baseline, 113 intervention, and 144 control participants completed at least 1 active caregiving-phase survey; 62 intervention and 117 control participants continued through bereavement. Results In the bereaved period, anxiety decreased significantly more in the intervention arm (−0.013 points/day) than in the control arm (−0.005 points/day, p <.05), a 2.16-point versus 0.83-point decrease over time. No significant effects were found for depression or grief intensity. Discussion and Implications Caregiver Speaks reduced anxiety among bereaved caregivers but did not demonstrate a statistically significant effect on depression or grief intensity. Findings highlight the potential of storytelling-based, online interventions to support caregivers, though certain adaptations to the bereavement curriculum may enhance its impact. The study's generalizability is supported by its diverse hospice agency recruitment. Future work should explore targeted mechanisms of change and intervention refinement. Clinical Trial Registration Number NCT04103580 pubtype: Academic Journal doctype: Article src: R language: English refInfo: copyright: @attributes: flag: N holdings: @attributes: islocal: N |
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