2023-09-28 14:46:10 +00:00
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abstract: 'Despite improved survival among children with congenital heart disease
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(CHD), the risk of psychosocial difficulties remains largely unchanged
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with an increased emphasis of improving support for parents as a
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mechanism to optimize outcomes. Objective: Using qualitative and
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quantitative methods, the current cross-sectional study examined
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parents'' experiences at the time of their child''s diagnosis, what they
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thought helped their child recover, barriers to support, and identified
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needs for future models of care. Method: The sample included 26 parents
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(22 mothers, 3 fathers, and 1 mother/father pair) of children with CHD,
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ranging in age between 6 months and 4 years with a mean age of 2 years.
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Results: Qualitative results were organized around five themes: (a) They
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(medical team) saved my child''s life, (b) My child is going to be okay,
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(c) Not out of the woods, (d) Optimizing support for my child and
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myself, and (e) What still gets in the way. Parents uniformly expressed
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a need for greater mental health support for their children as well as
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programs to improve parents'' skill and confidence, with no difference
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between age groups (< 2 years and > 2 years of age). Common barriers to
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service included distance and time off work. Conclusion: Parents''
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experiences informed both acute and long term implications following CHD
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diagnoses, and highlight current gaps in mental health care. Direction
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for clinical care and improved intervention opportunities are discussed.'
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affiliation: 'Williams, TS (Corresponding Author), Hosp Sick Children, Dept Psychol,
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555 Univ Ave, Toronto, ON M5G 1X8, Canada.
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Williams, Tricia S.; McDonald, Kyla P.; Roberts, Samantha D.; Sananes, Renee, Hosp
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Sick Children, Dept Psychol, Div Neurol, Toronto, ON, Canada.
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Williams, Tricia S.; Chau, Vann; Seed, Mike; Miller, Steven P.; Sananes, Renee,
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Univ Toronto, Dept Pediat, Toronto, ON, Canada.
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McDonald, Kyla P.; Roberts, Samantha D., York Univ, N York, ON, Canada.
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Chau, Vann; Miller, Steven P., Hosp Sick Children, Dept Paediat, Div Neurol, Toronto,
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ON, Canada.
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Seed, Mike, Hosp Sick Children, Dept Paediat, Div Cardiol, Toronto, ON, Canada.'
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author: Williams, Tricia S. and McDonald, Kyla P. and Roberts, Samantha D. and Chau,
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Vann and Seed, Mike and Miller, Steven P. and Sananes, Renee
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author-email: tricia.williams@sickkids.ca
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author_list:
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- family: Williams
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given: Tricia S.
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- family: McDonald
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given: Kyla P.
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- family: Roberts
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given: Samantha D.
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- family: Chau
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given: Vann
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- family: Seed
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given: Mike
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- family: Miller
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given: Steven P.
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- family: Sananes
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given: Renee
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da: '2023-09-28'
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doi: 10.1093/jpepsy/jsz055
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eissn: 1465-735X
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files: []
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issn: 0146-8693
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journal: JOURNAL OF PEDIATRIC PSYCHOLOGY
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keywords: CHD; mental health; needs assessment; parent experiences; support
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keywords-plus: 'EARLY INTERVENTION SERVICES; QUALITATIVE RESEARCH; YOUNG-CHILDREN;
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BRAIN-INJURY; OUTCOMES; INFANTS; SCHOOL; AGE; NEWBORNS; ILLNESS'
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language: English
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month: SEP
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number: '8'
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number-of-cited-references: '48'
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orcid-numbers: 'Miller, Steven/0000-0001-9102-9105
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Seed, Mike/0000-0001-7330-234X'
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pages: 924-936
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papis_id: 35cbc3c4c12be8d16847efafc68608b3
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ref: Williams2019diagnosesongoing
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times-cited: '13'
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title: 'From Diagnoses to Ongoing Journey: Parent Experiences Following Congenital
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Heart Disease Diagnoses'
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2023-10-01 08:15:07 +00:00
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type: article
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2023-09-28 14:46:10 +00:00
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unique-id: WOS:000493097500005
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usage-count-last-180-days: '1'
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usage-count-since-2013: '1'
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volume: '44'
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web-of-science-categories: Psychology, Developmental
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year: '2019'
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