Exploring the Experiences and Support Needs of Mothers of Children With Type 1 Diabetes
Creators: Azimi, Tara
Publisher: name: University of Alberta Library
Year: 2024

<p>Background: Type 1 diabetes (T1D) accounts for approximately 10% of all diabetes cases and is an incurable, life-threatening chronic condition that poses significant practical and emotional challenges for patients and their families. Typically diagnosed during childhood, T1D requires constant vigilance to manage and reduce the risk of complications, thereby improving long-term outcomes. The primary responsibility for managing T1D typically falls on mothers, who report performing 70% of all blood glucose checks and 79% of insulin administrations. Caregivers of children with T1D describe the management as intensive, stressful, and relentless, experiencing challenges that strain their physical health, social lives, finances, and emotional well-being. These burdens are reported to be more severe and prevalent among mothers than fathers. Although previous studies have reported on the psychological consequences of caring for children with chronic diseases, no qualitative review has specifically examined the caregiving burden among parents of children with T1D. Furthermore, no qualitative studies have focused on the experiences and support needs of mothers as caregivers, especially within the Canadian context, where Canada ranks sixth among the top 10 nations with the highest rates of T1D in children. It is estimated that 1 in 300 school-aged children in Canada have T1D, which is expected to rise. Objectives: (a) To conduct a qualitative review to describe the experience of caregiver burden in parents of children with T1D. (b) To understand the experiences of mothers caregiving for children with T1D under the age of 18 in northern Alberta. (c) To identify the support needs of mothers in northern Alberta with a child with T1D under the age of 18. (d) To suggest clinical, social, and policy recommendations to improve the health and mental well-being of mothers of children with T1D. Methods: Three interrelated studies were conducted to address the objectives. Study 1: A qualitative scoping review was conducted to systematically map the literature on caregiver burden in parents of children with T1D, exploring the financial, physical, social, spiritual, and emotional or psychological challenges they face. An expert health sciences librarian executed the search strategy. This process resulted in the inclusion of 18 peer-reviewed qualitative studies, which were thematically analyzed. Study 2: Sixteen semistructured interviews were conducted with mothers in northern Alberta who care for children with T1D under the age of 18. Participants were recruited using convenience sampling through the Stollery Pediatric Diabetes Education Centre (PDEC) in Edmonton, Alberta. Data were analyzed using a qualitative descriptive approach. Study 3: Two focus groups were held to understand the support needs of mothers of children with T1D under the age of 18 in northern Alberta. Twelve participants were recruited and divided into a rural or urban focus group of six participants each. Five of these mothers were participants from Study 2; the remaining seven were recruited through convenience sampling via the PDEC. The interviews and focus groups were recorded and transcribed verbatim. NVivo 12 was used for data management and analysis. The data were coded and analyzed using thematic analysis. Studies 2 and 3 were conducted collaboratively with a Caregiver Advisory Committee comprising three mothers of children with T1D. Results: The scoping review identified that parents, especially mothers, experience a range of distressing emotions, with grief being a constant experience. Parents frequently navigate a heightened state of vigilance to manage glucose levels, particularly during the night. Peer support was found to reduce feelings of loneliness and serve as an informational source. Individual interviews from Study 2 corroborated these findings, adding that respite care and continuous glucose monitoring systems relieved stress among mothers in northern Alberta. Although rural and urban mothers in Alberta have similar support needs, those in rural areas reported a greater need for specialized pediatric care and financial support. Overall, mothers in northern Alberta would benefit from improved access to formal respite care, enhanced mental health services, increased financial assistance, greater social interaction opportunities, and more comprehensive school policies. Conclusion: Ten clinical, policy, and social recommendations are presented to improve the experience of mothers caregiving for a child with T1D. Understanding their unique experiences and needs is essential for planning, improving, and advocating for services for this population. Enhanced support for mothers translates to better caregiving, diabetes management, and health outcomes for their affected children.</p>