Developing competencies for volunteer navigators to support caregivers of children living with medical complexity: a mixed-method e-Delphi study.
caregivers
children
chronic illness
competencies
navigation
palliative care
volunteers
Journal
Palliative care and social practice
ISSN: 2632-3524
Titre abrégé: Palliat Care Soc Pract
Pays: United States
ID NLM: 101754997
Informations de publication
Date de publication:
2023
2023
Historique:
received:
12
06
2023
accepted:
04
10
2023
medline:
13
11
2023
pubmed:
13
11
2023
entrez:
13
11
2023
Statut:
epublish
Résumé
Providing specially trained volunteer navigators is one promising strategy for supporting the increasing number of family caregivers who are caring for children living with medical complexity. The objective of this study was to develop consensus on the role and competencies required for volunteer navigators who support caregivers of children living with medical complexity. This was a mixed-method study using modified e-Delphi and focus group methods. In phase 1, a modified e-Delphi survey with 20 family caregivers and a focus group with 4 family caregivers were conducted to develop consensus on their unmet needs and the potential roles of a volunteer to meet those needs. In phase 2, a modified e-Delphi survey was conducted with experts to develop consensus on the volunteer competencies required to meet the roles identified by family caregivers in phase 1. Findings from phase 1 resulted in 36 need-related items over 8 domains: communication, daily life and chores, emotional support, information and knowledge, respite, support with decision-making, and sharing the caregiving experience. Concerns about the volunteer role included the potential lack of commitment in the absence of remuneration, the complexity of the child's condition that was beyond the role of a volunteer, and a preference for support from individuals they knew. Findings from the phase 2 Delphi survey with professionals resulted in 22 competencies, derived from the roles identified in phase 1, that would be required of volunteers who wished to support these family caregivers. This study provides insight into a role for volunteers in meeting the needs of family caregivers of children living with medical complexity. A volunteer with lived experience and adequate preparation can assist with meeting some of these important needs. Further research is required to better understand the feasibility and acceptability of such a role.
Sections du résumé
Background
UNASSIGNED
Providing specially trained volunteer navigators is one promising strategy for supporting the increasing number of family caregivers who are caring for children living with medical complexity.
Objective
UNASSIGNED
The objective of this study was to develop consensus on the role and competencies required for volunteer navigators who support caregivers of children living with medical complexity.
Design
UNASSIGNED
This was a mixed-method study using modified e-Delphi and focus group methods. In phase 1, a modified e-Delphi survey with 20 family caregivers and a focus group with 4 family caregivers were conducted to develop consensus on their unmet needs and the potential roles of a volunteer to meet those needs. In phase 2, a modified e-Delphi survey was conducted with experts to develop consensus on the volunteer competencies required to meet the roles identified by family caregivers in phase 1.
Results
UNASSIGNED
Findings from phase 1 resulted in 36 need-related items over 8 domains: communication, daily life and chores, emotional support, information and knowledge, respite, support with decision-making, and sharing the caregiving experience. Concerns about the volunteer role included the potential lack of commitment in the absence of remuneration, the complexity of the child's condition that was beyond the role of a volunteer, and a preference for support from individuals they knew. Findings from the phase 2 Delphi survey with professionals resulted in 22 competencies, derived from the roles identified in phase 1, that would be required of volunteers who wished to support these family caregivers.
Conclusion
UNASSIGNED
This study provides insight into a role for volunteers in meeting the needs of family caregivers of children living with medical complexity. A volunteer with lived experience and adequate preparation can assist with meeting some of these important needs. Further research is required to better understand the feasibility and acceptability of such a role.
Identifiants
pubmed: 37954463
doi: 10.1177/26323524231209060
pii: 10.1177_26323524231209060
pmc: PMC10634257
doi:
Types de publication
Journal Article
Langues
eng
Pagination
26323524231209060Informations de copyright
© The Author(s), 2023.
Déclaration de conflit d'intérêts
The authors declare that there is no conflict of interest.
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