Child and family experiences with inborn errors of metabolism: a qualitative interview study with representatives of patient groups
Background Patient-centered health care for children with inborn errors of metabolism (IEM)
and their families is important and requires an understanding of patient experiences, needs …
and their families is important and requires an understanding of patient experiences, needs …
[HTML][HTML] Child and family experiences with inborn errors of metabolism: a qualitative interview study with representatives of patient groups
SD Khangura, K Tingley, P Chakraborty… - Journal of Inherited …, 2016 - Springer
Background Patient-centered health care for children with inborn errors of metabolism (IEM)
and their families is important and requires an understanding of patient experiences, needs …
and their families is important and requires an understanding of patient experiences, needs …
[HTML][HTML] Parental psychosocial aspects and stressors involved in the management of inborn errors of metabolism
P Rajasekar, S Gannavarapu, M Napier… - Molecular Genetics and …, 2020 - Elsevier
Parents of children with inborn errors of metabolism (IEM) face numerous psychosocial
challenges. An increased understanding and awareness of these stressors can ensure …
challenges. An increased understanding and awareness of these stressors can ensure …
Exploring the experiences of family caregivers with low income accessing health care services for children with inborn errors of metabolism
K Chimney - 2022 - mspace.lib.umanitoba.ca
Inborn errors of metabolism (IEMs) have been shown to impact the wellbeing of family
caregivers, with more challenges experienced by families with lower income. The main …
caregivers, with more challenges experienced by families with lower income. The main …
[HTML][HTML] Scoping review of patient-and family-oriented outcomes and measures for chronic pediatric disease
SD Khangura, MD Karaceper, Y Trakadis, JJ Mitchell… - BMC pediatrics, 2015 - Springer
Background Improvements in health care for children with chronic diseases must be
informed by research that emphasizes outcomes of importance to patients and families. To …
informed by research that emphasizes outcomes of importance to patients and families. To …
[PDF][PDF] Scoping review of patient-and family-oriented outcomes and measures for chronic pediatric
SD Khangura, MD Karaceper, Y Trakadis… - 2015 - bmcpediatr.biomedcentral.com
Background: Improvements in health care for children with chronic diseases must be
informed by research that emphasizes outcomes of importance to patients and families. To …
informed by research that emphasizes outcomes of importance to patients and families. To …
[HTML][HTML] The impact of a child's inborn error of metabolism: the parents' perspectives on restrictions, discrimination, family planning, and emergency management
T Harings, MP Neininger, S Eisenhofer… - Orphanet Journal of …, 2024 - Springer
Background To investigate the impact of children's inborn error of metabolism (IEMs) on the
children's and their parents' lives from the parents' perspective. We focused on disease …
children's and their parents' lives from the parents' perspective. We focused on disease …
Scoping review of patient-and family-oriented outcomes and measures for chronic pediatric disease.
MD Karaceper, Y Trakadis, JJ Mitchell, P Chakraborty… - 2015 - bura.brunel.ac.uk
Improvements in health care for children with chronic diseases must be informed by
research that emphasizes outcomes of importance to patients and families. To support a …
research that emphasizes outcomes of importance to patients and families. To support a …
Integrating Culture into Genetic Counseling: A Qualitative Study Investigating the Experiences of Families with Inborn Errors of Metabolism
A Lim - 2022 - search.proquest.com
Given their rarity, chronicity, and intense disease management requirements, inborn errors
of metabolism (IEMs) present a unique set of challenges for families of affected individuals …
of metabolism (IEMs) present a unique set of challenges for families of affected individuals …
[HTML][HTML] P480: Parent and healthcare personnel perspectives on challenges to family-centered care for children with inherited metabolic diseases: A qualitative …
A Chow, G D'Amours, I Jordan, N Pallone… - Genetics in Medicine …, 2024 - Elsevier
Methods Study# 1: Parents of children<= 12 years old with an IMD and receiving care at one
of 11 pediatric metabolic centers were recruited through these centers to participate in a …
of 11 pediatric metabolic centers were recruited through these centers to participate in a …