|dc.description.abstract||Objectives: The objectives of this thesis were to: (i) understand the experiences of parents/caregivers of children with inherited metabolic diseases (IMDs), including perceptions of the health care system; and (ii) identify important patient/family-centred outcomes for measurement in future studies.
Methods: A qualitative study used semi-structured interviews to gain in-depth insight into caregivers’ experiences. In an adapted meta-synthesis study, the qualitative findings were integrated with the results of related research to identify priority outcomes.
Results: Twenty-one caregivers were interviewed. Participants described adjusting to the management of their child’s illness through specific coping strategies but reported stress related to social development. While generally satisfied with disease-specific care, participants described negative experiences with non IMD-specific health services. Health-related quality of life, parental coping, and specific experiences with health care emerged as high-priority outcomes.
Conclusions: This project contributes to the limited published literature on caregiver experiences with pediatric IMD and informs future patient-centred research.|
|dc.publisher||Université d'Ottawa / University of Ottawa|
|dc.subject||pediatric inherited metabolic diseases (IMD)|
|dc.subject||patient- and family-centred outcomes|
|dc.title||Experiences of Parents of Children Diagnosed with Inherited Metabolic Diseases (IMD) in Canada: Qualitative Description and Identification of Patient- and Family-Centred Outcomes|
|thesis.degree.discipline||Médecine / Medicine|
|uottawa.department||Épidémiologie et médecine sociale / Epidemiology and Community Medicine|
|Collection||Thèses, 2011 - // Theses, 2011 -|