Developing the Role of Volunteers to Support Caregivers of Children Living with Medical Complexity

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By Gloria Puurveen, PhD, Project Manager and Knowledge Translation – Nav-CARE project, University of British Columbia-Okanagan (UBC-O), Barbara Pesut PhD, RN, Professor, School of Nursing, Principal Research Chair in Palliative & End-of-Life Care (UBC-O) and Robyn Thomas, Master’s student, Interdisciplinary Graduate Studies (UBC-O)

The number of children living with medical complexity is rising due to advances in treatment methods. Therefore, parents as family caregivers are called upon to provide increasingly sophisticated and intense care in the home for these children. To date, there are few interventions designed to provide support in the home for these families. One way to improve support for family caregivers is by connecting them to volunteers who focus on providing support for the day-to-day challenges in a way that improves their quality of life.  

Nav-CARE (Navigation: Connecting, Advocating, Resourcing, and Engaging) is a volunteer navigation program that seeks to improve the quality of life of adults living with declining health and is being implemented in hospice palliative care organizations across Canada. Robyn Thomas, a Masters student at the University of British Columbia-Okanagan was interested in whether Nav-CARE could be adapted for families caring for children with medical complexity. She and her committee conducted research into what families thought about this potential volunteer role and the competencies required to prepare volunteers for that role.  

In phase one of the research, Robyn first conducted a rapid review of the research literature to identify a list of family caregiver needs in relation to caring for a medically complex child. She used this list to survey and develop consensus among 20 family caregivers about whether a volunteer could assist them with each of these needs. A focus group with four family caregivers explored this topic in greater detail.  

Family caregivers who participated in phase one identified 34 items over eight domains of caregiver needs including: emotional support, the need for respite, the need to share the caregiving experience, support with decision-making, and support with daily life and chores. They also identified the need for support in relation to communicating their child’s condition to multiple care providers, as this was particularly burdensome for some:  

Every 12 hours it was a different doctor. Every 12 hours I had to explain exactly what his condition was and what his baseline was and what his normal was […] it was ridiculous. I kept saying, ‘Can’t you read the file? Like, this is silly.’ 

Family caregivers also identified information and knowledge needs, as finding resources was especially challenging and time consuming, as one caregiver explained: 

I found that there’s no one telling you where resources are… I need to call, like, a hundred people […] one person would kind of refer me to ‘Oh, maybe talk to this person.  Talk to this person.’  And you would find little nuggets along the way, ‘Oh, well, maybe this person could help with this.’  

In phase two of the research, eight professionals with expertise in children with medical complexity, family caregiving, volunteerism, and/or navigation identified and ranked the importance of competencies required from volunteers to support caregiver needs identified in phase one. 27 volunteer competencies were identified, all ranked as being important. Examples include understanding how to effectively communicate, understanding caregiver needs related to daily-life activities and chores, promoting emotional well-being of families, assessing need for information, understanding family-centred respite support, understanding factors that impact decision making for caregivers, connecting caregivers to the community, and demonstrating compassion. 

Overall, this research points to potential volunteer roles that could assist family caregivers in the home and a set of competencies to prepare volunteers for that role. Future research will examine the feasibility and acceptability of this intervention. Ultimately, Thomas hopes that her research can make a difference at the level of accessibility, education, and training. Above all, she wants to normalize these conversations and create a space where pediatric hospice palliative care can be spoken about without hesitation or doubt: “I think that in our Canadian society as a whole, a child who is dying or a child who is terminally ill is this very difficult situation to understand and it’s almost unacceptable philosophically. It’s something that none of us can comprehend. Part of the reason that this field is so overlooked is because it’s so difficult to talk about and to actually address. But when you hear about the challenges people are facing, it really shows just how important it is that we bring attention and focus to such a vulnerable journey that people are on. It is overwhelming, it is complex but it is really important that more attention is brought to pediatric palliative care and the impact that it has on caregivers and family.” 

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