Background Living with a child with a long‐term condition can result in challenges above
usual parenting because of illness‐specific demands. A critical evaluation of research …

Objectives Congenital heart defects (CHD) can be detected at ultrasound but are sometimes
not diagnosed until birth, which can cause stress and heightened emotion within the family …

Background Various authors have reported feelings of loss and grief in parents of children
with autism spectrum disorder. However, no previous studies have investigated the structure …

huang y.‐p., kellett um & st john w.(2010) Cerebral palsy: experiences of mothers after
learning their child's diagnosis. Journal of Advanced Nursing 66 (6), 1213–1221. Abstract …

Background Raising a child diagnosed with infantile cerebral palsy is a challenge for
families and causes many changes in their lifestyle. When the diagnosis is unexpected …

Background The diagnosis of the rare genetic diseases has great importance in treating
multisystemic conditions, preventing potential complications, and estimating disease risk for …

Phenylketonuria (PKU) is a rare inherited metabolic disorder which can cause neurological
damage if left untreated. PKU is identified through newborn screening in developed …

Grief–a physical, emotional, and psychological reaction to loss–reflects a fundamental
human experience with significant implications for organizations. Although there is a …

kepreotes e, Keatinge d & Stone t (2010) Journal of Nursing and Healthcare of Chronic
Illness2, 51–62 The experience of parenting children with chronic health conditions: a new …

Background CLN3 disease is a neurodegenerative condition presenting in the first decade
of life typically leading to death in the third decade. The earliest symptom is rapidly …