Exploring low-income family caregivers' experiences of accessing health care services for children with inborn errors of metabolism

Inborn errors of metabolism (IEMs) are a diverse group of genetic diseases that commonly require frequent visits to medical professionals and may be life-threatening. These diseases have been shown to impact the physical, emotional, social, and financial wellbeing of family caregivers. Families with lower monthly income can experience more challenges. This research aims to explore the experiences of low-income family caregivers of accessing care for their children with IEMs that require emergency treatment in Manitoba. Information will first be collected by mailing an invitation to complete an online survey to approximately 200 families. Next, approximately 15 people will be selected to participate in interviews over the phone or videoconference about their experiences accessing care for their children with IEMs. This study will explore barriers to accessing care and whether there are differences in experience depending on how far away families live from Winnipeg. The impact of COVID-19 on these families' experiences accessing care will also be explored, as research has suggested that low-income families have been further impacted by the pandemic with an increased risk of having bad experiences, such as challenges to accessing healthcare. This is the first study to investigate the experiences of low-income family caregivers accessing metabolic care for their children in Manitoba. This research aims to promote health equity in Manitoba and beyond by creating a space for low-income family caregivers to share their stories about accessing care for children with IEMs.