Experiences of Parents of Children Diagnosed with Inherited Metabolic Diseases (IMD) in Canada: Qualitative Description and Identification of Patient- and Family-Centred Outcomes

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Title: Experiences of Parents of Children Diagnosed with Inherited Metabolic Diseases (IMD) in Canada: Qualitative Description and Identification of Patient- and Family-Centred Outcomes
Authors: Siddiq, Shabnaz
Date: 2016
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.
URL: http://hdl.handle.net/10393/34273
http://dx.doi.org/10.20381/ruor-4971
CollectionThèses, 2011 - // Theses, 2011 -
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