Abstract
Introduction
Of the family members providing care, in the United States over 5.4 million are young people (<18 years of age) and they are the caregivers receiving the least support overall. Given the need to support cancer survivors through a family-centered practice approach, this lack of support and intervention for young caregivers represents a substantial gap in cancer care. In this study, we will adapt a young caregivers intervention, YCare, with young caregivers in families affected by cancer in order to advance support for families in cancer settings. YCare is an intervention that improves the support young caregivers provide through a peer-engaged, multidisciplinary model but has previously not been studied in the cancer care setting.
Methods
Guided by the updated Consolidated Framework for Implementation Research (CFIR) we will engage stakeholders (i.e., young caregivers, cancer survivors, health care providers) using qualitative (i.e., one-on-one semi-structured interviews) and arts-based methods. Stakeholders will be recruited via cancer registries and community partners. Data will be analyzed descriptively using deductive (e.g., CFIR domains) and inductive (e.g., cancer practice settings) approaches.
Discussion
The results will indicate the critical components for adapting the YCare intervention to the cancer practice context including new intervention elements and key characteristics. Adapting YCare to a cancer context will address a critical cancer disparity issue.
Funder
American Occupational Therapy Foundation
Publisher
Public Library of Science (PLoS)
Reference15 articles.
1. National Cancer Institute. Cancer Statistics. Bethesda, MD: National Cancer Institute. 2020 Sept 25 [Cited 2021 Sept 10]. https://www.cancer.gov/about-cancer/understanding/statistics.
2. National Alliance for Caregiving. Caregiving in the United States. Washington, DC: AARP. 2020 May [Cited 2021 Sept 10]. https://www.aarp.org/content/dam/aarp/ppi/2020/05/executive-summary-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.003.pdf
3. Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving;EE Kent;Cancer,2016
4. Feasibility of a multidisciplinary caregiving training protocol for young caregivers in families with ALS;MS Kavanaugh;Social Work in Health Care,2018
5. Skill, confidence and support: Conceptual elements of a child/youth caregiver training program in amyotrophic lateral sclerosis–the YCare protocol;MS Kavanaugh;Neurodegenerative Disease Management,2020