Written by Barbara K. Pesut
research project: developing the role of the volunteer in supporting family caregivers of children with medical complexities
Lead investigators/designated PI’s
Robyn Thomas and Barbara K. Pesut
Project approval date
June 16, 2021
Thesis defense took place in April 2022
Nav-CARE is an intervention in which volunteers provide social support and connection to resources for persons living at home with advanced illness, with the goal of improving their quality of life. In this study we will begin an adaptation of Nav-CARE for family caregivers of children living with serious medical illnesses.
The first step in this adaptation is to determine an appropriate role for volunteers and to establish the competencies to prepare them for that role. In addition to this, we want to understand what factors influence caregivers to engage with external support.
In order to gather this information, we will conduct Modified electronic-Delphi (e-Delphi) methods with caregivers and academic or health professionals, as well as put together a focus group with caregivers for additional insight.
The purpose of this study is to develop consensus on the role and competencies required for volunteer navigators to support family caregivers of children living with medical complexity and to understand what impedes or empowers caregivers to engage with external support.
- To determine what family caregivers would see as useful and appropriate roles for a volunteer navigator
- Determine the competencies required of volunteer navigators to perform those roles
- Explore factors that influence families of children with medical complexities to engage with external support