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

FieldValue
dc.contributor.authorSiddiq, Shabnaz
dc.contributor.authorWilson, Brenda J
dc.contributor.authorGraham, Ian D
dc.contributor.authorLamoureux, Monica
dc.contributor.authorKhangura, Sara D
dc.contributor.authorTingley, Kylie
dc.contributor.authorTessier, Laure
dc.contributor.authorChakraborty, Pranesh
dc.contributor.authorCoyle, Doug
dc.contributor.authorDyack, Sarah
dc.contributor.authorGillis, Jane
dc.contributor.authorGreenberg, Cheryl
dc.contributor.authorHayeems, Robin Z
dc.contributor.authorJain-Ghai, Shailly
dc.contributor.authorKronick, Jonathan B
dc.contributor.authorLaberge, Anne-Marie
dc.contributor.authorLittle, Julian
dc.contributor.authorMitchell, John J
dc.contributor.authorPrasad, Chitra
dc.contributor.authorSiriwardena, Komudi
dc.contributor.authorSparkes, Rebecca
dc.contributor.authorSpeechley, Kathy N
dc.contributor.authorStockler, Sylvia
dc.contributor.authorTrakadis, Yannis
dc.contributor.authorWafa, Sarah
dc.contributor.authorWalia, Jagdeep
dc.contributor.authorWilson, Kumanan
dc.contributor.authorYuskiv, Nataliya
dc.contributor.authorPotter, Beth K
dc.date.accessioned2016-12-12T04:43:09Z
dc.date.available2016-12-12T04:43:09Z
dc.date.issued2016-12-07
dc.identifier.citationOrphanet Journal of Rare Diseases. 2016 Dec 07;11(1):168
dc.identifier.urihttp://dx.doi.org/10.1186/s13023-016-0548-2
dc.identifier.urihttp://hdl.handle.net/10393/35582
dc.description.abstractAbstract Background 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. Methods 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. Results We completed interviews with 21 parents/caregivers. The 21 children were aged <1 to 7 years old with IMD that included amino acid disorders, urea cycle disorders, fatty acid oxidation disorders, and organic acid disorders or ‘other’ IMD. Most parents reported that they and their families had adapted well to their child’s diagnosis. Parents used proactive coping strategies to integrate complex disease management protocols into routine family life. An important source of stress was concern about the social challenges faced by their children. Participants reported positive interactions with their most involved health care providers within the metabolic clinic. However, they reported challenges associated with the health care system outside of disease-specific metabolic care, when encountering systems and providers unfamiliar with the child’s disease. Conclusions The successful use of proactive coping strategies among parents of children with IMD in this study suggests the potential value of promoting positive coping and is an important direction for future study. Parents’ social concerns for their children were important stressors that warrant consideration by health care providers positioned to support families. Our results with respect to experiences with care highlight the important role of specialized metabolic clinics and point to a need for better coordination of the care that takes place outside the disease-specific management of IMD.
dc.titleExperiences of caregivers of children with inherited metabolic diseases: a qualitative study
dc.typeJournal Article
dc.date.updated2016-12-12T04:43:09Z
dc.language.rfc3066en
dc.rights.holderThe Author(s).
CollectionLibre accès - Publications // Open Access - Publications

Files