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.
| Identifer | oai:union.ndltd.org:uottawa.ca/oai:ruor.uottawa.ca:10393/34273 |
| Date | January 2016 |
| Creators | Siddiq, Shabnaz |
| Contributors | Potter, Elizabeth, Wilson, Brenda |
| Publisher | Université d'Ottawa / University of Ottawa |
| Source Sets | Université d’Ottawa |
| Language | English |
| Detected Language | English |
| Type | Thesis |
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