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

Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life.

Orphanet journal of rare diseases - 19 Jan 2017

Mori Yuka, Downs Jenny, Wong Kingsley, Anderson Barbara, Epstein Amy, Leonard Helen

Abstract excerpt

BACKGROUND: Although research in this area remains sparse, raising a child with some genetic disorders has been shown to adversely impact maternal health and family quality of life. The aim of this study was to investigate such impacts in families with a child with the CDKL5 disorder, a newly recognised genetic disorder causing severe neurodevelopmental impairments and refractory epilepsy. METHODS: Data were...

Read the complete abstract on PubMed

Topics

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

Share to Caregivers
Share to Emotions
Share to Epileptic Syndromes

Methodology Data sources Editorial policy Privacy About Contact Helena Bioinformatics

Share to Health Surveys

Share to Parents

Share to Rare Diseases

Share to Rett Syndrome

Share to Spasms, Infantile

Source

Open in PubMed Open full text

Identifiers

PMID: 28103894
DOI: 10.1186/s13023-016-0563-3
PMCID: PMC5248472

Genes

CDKL5

Provenance

PubMed metadata and Literature Corpus relationships. Corpus snapshot updated 7 Sept 2026. Manifest publication-graph-cohort-2026-09-07.1.

Source receipt: pubmed, retrieved 7 Sept 2026.

Related research

Semantic proximity does not establish scientific evidence.

Research trail→

Click a neighbor to travelStep 1 · 12 closest

Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life.PMID 28103894Read ↗

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

Caregiver and family quality of life for children with fetal alcohol spectrum disorderSemantic proximity Read ↗

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

Experiences of caregivers of children with inherited metabolic diseases: a qualitative studySemantic proximity Read ↗

Parental stress and family quality of life in families of individuals living with Angelman syndromeSemantic proximity Read ↗

An International Study of Caregiver-Reported Burden and Quality of Life in Metachromatic LeukodystrophySemantic proximity Read ↗

The day-to-day experiences of caring for children with Osteogenesis Imperfecta: A qualitative descriptive studySemantic proximity Read ↗

“I Felt Like a Lone Ranger”: Experiences of Australian Families Living with KIF1A-Associated Neurological DisorderSemantic proximity Read ↗

A qualitative study on the impact of caring for an ambulatory individual with nonsense mutation Duchenne muscular dystrophySemantic proximity Read ↗

Factors of family impact in a Swedish-German cohort of children born with esophageal atresiaSemantic proximity Read ↗

Addressing the Needs and Identifying Supports for Parents of Chronically Ill Adolescents and Young Adults in their Shared Transition from Pediatric to Adult Care: A Scoping Review ProtocolSemantic proximity Read ↗

Fathers’ and Mothers’ Support Needs and Support Experiences after Rapid Genome SequencingSemantic proximity Read ↗

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