Funding outcome

Rates of type 1 diabetes (T1D) among children and youth are on the rise globally. Canada has one of the highest incidence rates of T1D for children under the age of 15. Having a child diagnosed with a chronic and life-threatening illness such as T1D is highly distressing to parents. Although there has been a rise in the role of fathers as caregivers, mothers are often the primary caregivers of chronically ill children and are responsible for caring for their daily medical needs. As primary caregivers, mothers of children with T1D report increased depression, anxiety, post-traumatic stress reactions and exhaustion. Although previous studies have reported on several psychological consequences of caregiving for children with T1D, no study has focused on the lived experience of mothers as caregivers of T1D children in Canada. There is also little recent evidence of the types of supports that are most important to mothers. I aim to fill this knowledge gap by answering the research question: What are the experiences and support needs of mothers of children with T1D in Edmonton, Alberta? To address my research objectives, I will carry out three inter-related qualitative research studies, using a community-based participatory research approach to ensure meaningful participation of caregivers and collaboration with health practitioners, staff and volunteers ('healthcare stakeholders'). Study 1: I will conduct a literature review to identify common themes on caregiving experience of primary caregivers of children with T1D. This will help guide the interview questions for study 2. Study 2: Semi-structured interviews will be carried out with mothers in Edmonton to learn about their experiences of caregiving for a child under the age of 13 with T1D diagnosed in the last 5 years. Children with T1D generally begin to assume major responsibility around the age of 13. Under the age of 13 is a vulnerable developmental period when T1D can be difficult to control, parenting stress can be elevated, and caregivers are additionally strained by normal child caretaking routines. Study 3: Three focus groups will be carried out with participants from study 2 and healthcare stakeholders to identify support needs for mothers of children with T1D. In a follow-up meeting, participants will rank the support strategies in the order they should be implemented by health planners and policy makers. Maintaining the health of mothers as caregivers is critical given that our health system relies on family caregivers as the backbone of care, yet we know little about the caregiving experiences of this population. A deeper understanding of this would be valuable for improving services and planning holistic care for mothers of T1D children.