Article

Coping with Wolf-Hirschhorn Syndrome: quality of life and psychosocial features of family carers

2020-06-03

Abstract excerpt

<title>Abstract</title><p><bold>Background</bold>: Wolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of children diagnosed with WHS is unknown. This study aims to characterize the sociodemographi...

Topics

Open a Topic to create a Post that cites this publication.

Identifiers and source

Literature Corpus work: 51694250-5907-5db4-bd35-e39991063872
DOI: 10.21203/rs.2.17095/v3

Open publication

Related research

Semantic proximity does not establish scientific evidence.

Click a neighbor to travelStep 1 · 12 closest

Coping with Wolf-Hirschhorn Syndrome: quality of life and psychosocial features of family carersDOI 10.21203/rs.2.17095/v3Read

Coping with Wolf-Hirschhorn syndrome: quality of life and psychosocial features of family carers.Semantic proximity Read

Natural history study of adults with Wolf-Hirschhorn syndrome 2: Patient-reported outcomes study.Semantic proximity Read

Natural history study of adults with Wolf-Hirschhorn syndrome 1: Case series of personally observed 35 individuals.Semantic proximity Read

[Wolf-Hirschhorn syndrome. A series of 27 patients: their epidemiological and clinical characteristics. The current situation of the patients and the opinions of their caregivers regarding the diagnostic process].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

The Ripple Effect: Quality of Life and Mental Health of Parents of children with ADHD in Saudi Arabia a Cross-Sectional StudySemantic proximity Read

Caregiver Stress and Coping Ability in Relation to Hyperphagia Among individuals with Prader–Willi SyndromeSemantic proximity Read

A web-based psychological support program for caregivers of children with rare chronic diseases: A randomized controlled trialSemantic proximity Read

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

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

Quality of life of children with short bowel syndrome and their caregivers from the perspective of caregivers: a cross-sectional study in ChinaSemantic proximity Read

Parent Recommendations for Family Functioning With Prader-Willi Syndrome: A Rare Genetic Cause of Childhood Obesity.Semantic proximity Read