Experiences of caregivers of children with inherited metabolic diseases: a qualitative study

We sought to understand the experiences of parents/caregivers of children with inherited metabolic diseases (IMD) in order to inform strategies for supporting patients and their families. We investigated their experiences regarding the management of disease, its impact on child and family life, and...

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Bibliographic Details
Published in:Orphanet journal of rare diseases 2016-12, Vol.11 (1), p.168-168, Article 168
Main Authors: Siddiq, Shabnaz, Wilson, Brenda J, Graham, Ian D, Lamoureux, Monica, Khangura, Sara D, Tingley, Kylie, Tessier, Laure, Chakraborty, Pranesh, Coyle, Doug, Dyack, Sarah, Gillis, Jane, Greenberg, Cheryl, Hayeems, Robin Z, Jain-Ghai, Shailly, Kronick, Jonathan B, Laberge, Anne-Marie, Little, Julian, Mitchell, John J, Prasad, Chitra, Siriwardena, Komudi, Sparkes, Rebecca, Speechley, Kathy N, Stockler, Sylvia, Trakadis, Yannis, Wafa, Sarah, Walia, Jagdeep, Wilson, Kumanan, Yuskiv, Nataliya, Potter, Beth K
Format: Article
Language:English
Subjects:
Adaptation, Psychological
Canada
Care and treatment
Caregivers
Child
Children
Family
Family Health
Genetic aspects
Health aspects
Home Care Services
Humans
Medical care
Medical research
Metabolic diseases
Metabolism, Inborn Errors
Qualitative research
Rare diseases
Stress, Psychological
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Summary:We sought to understand the experiences of parents/caregivers of children with inherited metabolic diseases (IMD) in order to inform strategies for supporting patients and their families. We investigated their experiences regarding the management of disease, its impact on child and family life, and interactions with the health care system. From four Canadian centres, we conducted semi-structured telephone interviews with parents/caregivers of children with an IMD who were born between 2006 and 2015 and who were participating in a larger cohort study. Participants were selected with the aim of achieving a diverse sample with respect to treatment centre, IMD, and age of the child. Interviews emphasized the impacts of the disease and its treatment on the child and family and explicitly queried perceptions of interactions with the health care system. We identified emergent themes from the interview data. We completed interviews with 21 parents/caregivers. The 21 children were aged
ISSN:1750-1172
1750-1172
DOI:10.1186/s13023-016-0548-2