Craniofacial anomalies and mothers’ psychological functioning: The mediating role of social support

Case, Rosalind; Anderson, Alistair R.; Walsh, Rodney

doi:10.1111/jpc.13710

Cited by 4 publications

(2 citation statements)

References 33 publications

(59 reference statements)

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“…Parents of children with health needs often have to take on a variety of roles, such as being caregivers, advocates, and care coordinators (Feragen et al, 2020). Parent/caregivers have been shown to experience higher levels of parenting stress (Case et al, 2018, Cousino and Hazen, 2013) that can impact upon the psychological adjustment of the whole family (Cousino and Hazen, 2013). Past studies have found that parents of children diagnosed with AS report increased levels of parenting stress attributed to difficulties accepting their child's condition, their child's behavior, and parental low self-esteem (Sarimski, 1998).…”

Section: Introductionmentioning

confidence: 99%

Psychological Adjustment in Apert Syndrome: Parent and Young Person Perspectives

Netherton

Horton

Stock

et al. 2021

The Cleft Palate Craniofacial Journal

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To date, limited research has been carried out into the psychological impact of having a diagnosis of Apert syndrome (AS) and the life experiences of families living with this condition. The aim of the current study was to explore psychological adjustment to AS from the perspectives of young people, and their parents, with the broader goal of informing care, and support for this population. Four young people (2 male) aged 11 to 15 years and their mothers were interviewed in their homes using a semistructured interview guide and photo-elicitation methods. Transcripts were analyzed using Interpretive Phenomenological Analysis. Three superordinate themes were identified from the data: (1) Acceptance and Adjustment: A Cyclical Journey; (2) A Barrier to Adjustment: Navigating Treatment; and (3) Facilitating Adjustment: Social Support. Families described adjustment as a cyclical process, which was sensitive to change, particularly in the context of ongoing medical treatment. Families also utilized many resources, particularly in the form of social support, to adjust to the challenges of AS and build resilience. The findings of this study have important implications for the implementation of patient-centered care within designated craniofacial treatment centers, which should at a minimum include the provision of reliable information throughout the treatment pathway, additional support from health professionals at key times of transition, and the coordination of support across medical teams, and other key organizations in the child's life.

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Section: Introductionmentioning

confidence: 99%

Psychological Adjustment in Apert Syndrome: Parent and Young Person Perspectives

Netherton

Horton

Stock

et al. 2021

The Cleft Palate Craniofacial Journal

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show abstract

“…Recently, there has been more attention given to patient and parental proxy reported measures of quality of life (QoL) (Nelson et al, 2012; Stock & Feragen, 2016; Case et al, 2018). There are a growing number of studies investigating QoL both in children with OFC and more generally in children with facial deformities, including 2 systematic reviews (Klassen et al, 2012; Tapia et al, 2016).…”

Section: Introductionmentioning

confidence: 99%

Quality of Life Using General Population Validated Questionnaires in Children With Cleft Lip and/or Palate in New Zealand

Thompson

Ayrey

Slykerman

et al. 2020

The Cleft Palate-Craniofacial Journal

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Objective: To determine the level of quality of life (QoL) in children with cleft lip and/or palate (CL/P) and whether this differs by cleft phenotype. Design: A cohort of children with CL/P born in New Zealand. Setting: A nationwide study of children born with CL/P and having primary surgery in New Zealand. Participants: Children with CL/P and their families (n = 397) who attended a cleft clinic between October 1, 2014, and September 30, 2017, and agreed to complete questionnaires on QoL. Main Outcomes: Primary outcomes were QoL from the PedsQL 4.0 core generic questionnaires and the PedsQL 2.0 Family impact scale. Results: Children with CL/P in New Zealand generally have a high QoL as assessed by the PedsQL. The impact of cleft phenotype had limited effects on the child, however there were significant impacts on parents and families. We found that the family impact scale differed by cleft phenotype with those with CL having the highest QoL and those with cleft palate the lowest, and this was consistent across QoL subscales. Quality of life improved as a whole by age, particularly in physical and cognitive functioning, as well as in the ability to undertake family activities. Conclusions: Children with CL/P have generally good levels of QoL in New Zealand, however cleft phenotype impacts on the level, with the lowest levels in those with cleft palate. Psychological support of children with cleft and their families should be an integral part of cleft care.

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Psychosocial Adjustment of Patients with Congenital Craniofacial Malformations

Meyer

2021

Fundamentals of Craniofacial Malformations

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Craniofacial anomalies and mothers’ psychological functioning: The mediating role of social support

Cited by 4 publications

References 33 publications

Psychological Adjustment in Apert Syndrome: Parent and Young Person Perspectives

Psychological Adjustment in Apert Syndrome: Parent and Young Person Perspectives

Quality of Life Using General Population Validated Questionnaires in Children With Cleft Lip and/or Palate in New Zealand

Psychosocial Adjustment of Patients with Congenital Craniofacial Malformations

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