abstract: 'Despite improved survival among children with congenital heart disease

  (CHD), the risk of psychosocial difficulties remains largely unchanged

  with an increased emphasis of improving support for parents as a

  mechanism to optimize outcomes. Objective: Using qualitative and

  quantitative methods, the current cross-sectional study examined

  parents'' experiences at the time of their child''s diagnosis, what they

  thought helped their child recover, barriers to support, and identified

  needs for future models of care. Method: The sample included 26 parents

  (22 mothers, 3 fathers, and 1 mother/father pair) of children with CHD,

  ranging in age between 6 months and 4 years with a mean age of 2 years.

  Results: Qualitative results were organized around five themes: (a) They

  (medical team) saved my child''s life, (b) My child is going to be okay,

  (c) Not out of the woods, (d) Optimizing support for my child and

  myself, and (e) What still gets in the way. Parents uniformly expressed

  a need for greater mental health support for their children as well as

  programs to improve parents'' skill and confidence, with no difference

  between age groups (< 2 years and > 2 years of age). Common barriers to

  service included distance and time off work. Conclusion: Parents''

  experiences informed both acute and long term implications following CHD

  diagnoses, and highlight current gaps in mental health care. Direction

  for clinical care and improved intervention opportunities are discussed.'
affiliation: 'Williams, TS (Corresponding Author), Hosp Sick Children, Dept Psychol,
  555 Univ Ave, Toronto, ON M5G 1X8, Canada.

  Williams, Tricia S.; McDonald, Kyla P.; Roberts, Samantha D.; Sananes, Renee, Hosp
  Sick Children, Dept Psychol, Div Neurol, Toronto, ON, Canada.

  Williams, Tricia S.; Chau, Vann; Seed, Mike; Miller, Steven P.; Sananes, Renee,
  Univ Toronto, Dept Pediat, Toronto, ON, Canada.

  McDonald, Kyla P.; Roberts, Samantha D., York Univ, N York, ON, Canada.

  Chau, Vann; Miller, Steven P., Hosp Sick Children, Dept Paediat, Div Neurol, Toronto,
  ON, Canada.

  Seed, Mike, Hosp Sick Children, Dept Paediat, Div Cardiol, Toronto, ON, Canada.'
author: Williams, Tricia S. and McDonald, Kyla P. and Roberts, Samantha D. and Chau,
  Vann and Seed, Mike and Miller, Steven P. and Sananes, Renee
author-email: tricia.williams@sickkids.ca
author_list:
- family: Williams
  given: Tricia S.
- family: McDonald
  given: Kyla P.
- family: Roberts
  given: Samantha D.
- family: Chau
  given: Vann
- family: Seed
  given: Mike
- family: Miller
  given: Steven P.
- family: Sananes
  given: Renee
da: '2023-09-28'
doi: 10.1093/jpepsy/jsz055
eissn: 1465-735X
files: []
issn: 0146-8693
journal: JOURNAL OF PEDIATRIC PSYCHOLOGY
keywords: CHD; mental health; needs assessment; parent experiences; support
keywords-plus: 'EARLY INTERVENTION SERVICES; QUALITATIVE RESEARCH; YOUNG-CHILDREN;

  BRAIN-INJURY; OUTCOMES; INFANTS; SCHOOL; AGE; NEWBORNS; ILLNESS'
language: English
month: SEP
number: '8'
number-of-cited-references: '48'
orcid-numbers: 'Miller, Steven/0000-0001-9102-9105

  Seed, Mike/0000-0001-7330-234X'
pages: 924-936
papis_id: 35cbc3c4c12be8d16847efafc68608b3
ref: Williams2019diagnosesongoing
times-cited: '13'
title: 'From Diagnoses to Ongoing Journey: Parent Experiences Following Congenital
  Heart Disease Diagnoses'
type: Article
unique-id: WOS:000493097500005
usage-count-last-180-days: '1'
usage-count-since-2013: '1'
volume: '44'
web-of-science-categories: Psychology, Developmental
year: '2019'