Discover Community Create You

Loading publication...

Noodle always counts identifier-free feature events for service operation. With your permission, Google Analytics can also estimate audience and engagement. Search text, publication identifiers, cookies, IP addresses and browser fingerprints are never included in Noodle's first-party event counters.

Privacy details

Article

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

1 Dec 2016

Abstract excerpt

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...

Read the complete abstract on PubMed

Topics

Share this publication in a Topic to start or enrich a Post.

Share to Genomics and Rare Diseases
Share to Lysosomal Storage Disorders Research
Share to Metabolism and Genetic Disorders

Methodology Data sources Editorial policy Privacy About Contact Helena Bioinformatics

Source

Identifiers

PMID: 27927250
DOI: 10.1186/s13023-016-0548-2

Provenance

PubMed metadata and Literature Corpus relationships. Corpus snapshot updated 8 Sept 2026.

Related research

Semantic proximity does not establish scientific evidence.

Research trail→

Click a neighbor to travelStep 1 · 12 closest

Experiences of caregivers of children with inherited metabolic diseases: a qualitative studyPMID 27927250Read ↗

Quality of life in children treated with restrictive diet for inherited metabolic disease.Semantic proximity Read ↗

Carer burden in rare inherited diseases: a literature review and conceptual modelSemantic proximity Read ↗

Alone in a Crowd? Parents of Children with Rare Diseases’ Experiences of Navigating the Healthcare SystemSemantic proximity Read ↗

Clouds over IEMs? Perspectives for inherited metabolic diseases in adults from a retrospective cohort study in two Swiss adult metabolic clinicsSemantic proximity Read ↗

Anxiety, Depression and Quality of Life in Parents of Children with Congenital HyperinsulinismSemantic proximity Read ↗

What can pediatricians learn from adult inherited metabolic diseases?Semantic proximity Read ↗

Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delaysSemantic proximity Read ↗

Parents’ experiences of living with, and caring for children, adolescents and young adults with Mucopolysaccharidosis (MPS)Semantic proximity Read ↗

Developing a CHARGE syndrome checklist: Health supervision across the lifespan (from head to toe).Semantic proximity Read ↗

Health-related quality of life and family well-being in pediatric patients with genetic conditions and their families: a scoping review protocolSemantic proximity Read ↗

Examining Emotional and Behavioural Trajectories in Siblings of Children with Life-Threatening ConditionsSemantic proximity Read ↗

Mapping the PIK3CA-related overgrowth spectrum (PROS) patient and caregiver journey using a patient-centered approach.Semantic proximity Read ↗

⌁Select a neighboring publication to make it the new centre.