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Thomas, Robyn Lilian

University of British Columbia

Background: A growing number of children in Canada are born with medically complex conditions. The challenging presentation and progression of these conditions may lead to uncertainty surrounding a child’s survival into adulthood. A common thread throughout the life of a child with medical complexity is a high need for caregiving. To address these needs, parents may fulfill the consuming role of family caregiver, though many caregivers across Canada face a health system ill-equipped to provide them with family-centered and holistic support. Volunteerism is a potential, yet largely unexplored, avenue of support that could address some of the needs of family caregivers of children with medical complexity. Research Design: This mixed-method study occurred over two phases. Phase One aimed to develop the role of a volunteer to meet family caregiver needs using a modified electronic-Delphi survey and a virtual Focus Group interview with family caregivers. Phase Two aimed to develop the competencies required by a volunteer to meet the roles as described by family caregivers in Phase One. Phase Two involved a second modified electronic-Delphi method of two survey rounds with academic and health professionals specialized in pediatric palliative care and volunteer navigation. Findings: The result of Phase One was a list of 34 roles under eight domains: (1) communication, (2) daily-life and chores, (3) emotional support, (4) information and knowledge, (5) respite, (6) decision-making, (7) sharing the caregiving experience, and (8) qualities of help. Phase Two resulted in a list of 22 related sub-competencies and 62 accompanying learning objectives for each of the eight domains identified in Phase One. Discussion: The findings of this thesis have laid the groundwork for a volunteer role with families of children with medical complexity. These findings suggest that caregivers would benefit from individualized and family-centered volunteer support that addresses a range of needs. Ideally, caregivers would prefer long-term support in-the-home and with a volunteer who has some previous lived experiences as a caregiver for a child with medical complexity. This thesis can lead to future research such as the development of a comprehensive training curriculum and a feasibility and acceptability study.

Text

2022-05-10

Attribution-NonCommercial-NoDerivatives 4.0 International

http://hdl.handle.net/2429/81478

Interdisciplinary Studies

University of British Columbia

UBCO

http://creativecommons.org/licenses/by-nc-nd/4.0/