Risk and Protective Factors for Psychological Distress in Families Following a Diagnosis of Cleft Lip and/or Palate

Stock, Nicola Marie; Costa, Bruna; White, Paul; Rumsey, Nichola

doi:10.1177/1055665619862457

Cited by 41 publications

(49 citation statements)

References 53 publications

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“…This finding is in line with previous CL/P research (Damiano et al, 2006;Nelson & Kirk, 2013;Feragen et al, 2017) and the wider pediatric literature (Cousino & Hazen, 2013), and provides a positive overall view of the health services relevant to CL/P. Health-care satisfaction is a key predictor of overall familial well-being (Stock et al, 2019a), and as such should be systematically monitored and maintained.…”

Section: Overall Satisfaction With Health-caresupporting

confidence: 87%

“…In a recent UK-wide quantitative study exploring parents’ psychosocial adjustment following the birth of a child with CL/P (Stock et al, 2019a), satisfaction with health-care was consistently associated with higher levels of parental psychological well-being. This relationship between health-care satisfaction and parental adjustment reinforces the importance of high quality, coordinated, patient-centered care.…”

Section: Introductionmentioning

confidence: 99%

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Satisfaction With Health Care in Families Following a Diagnosis of Cleft Lip and/or Palate in the United Kingdom

Costa

White

Stock

2019

The Cleft Palate-Craniofacial Journal

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Objective: Having a child born with a cleft lip and/or palate (CL/P) poses several challenges for new parents and can have a significant psychological impact on the family as a whole. Previous research has indicated that dissatisfaction with health care is a risk factor for poor parental adjustment and family functioning. Yet, knowledge is lacking in regard to which aspects of care parents may be dissatisfied with. The current study aimed to comprehensively evaluate health-care satisfaction in families following a diagnosis of CL/P by utilizing data collected from a UK-wide birth cohort. Methods: Self-reported questionnaire data were obtained from 517 parent dyads enrolled in The Cleft Collective Birth Cohort Study. The “Pediatric Quality of Life Inventory—Healthcare Satisfaction Generic Module” was used as the primary outcome measure. Results: Overall, parents were satisfied with the care they had received. However, less favorable scores were identified in relation to the information parents had been given. A good degree of agreement between mothers and fathers was observed. However, marginal evidence suggested that fathers were significantly more dissatisfied than mothers regarding the “Communication” and “Inclusion of Family” subscales. Conclusions: Although the findings of this large-scale study reflect overall health-care satisfaction, issues are raised in relation to the quality of information families received, particularly for fathers. In addition, fathers may feel less included in their child’s treatment pathway. These findings offer practical suggestions as to which areas of care could be targeted by all health professionals to improve parents’ health-care experiences and promote overall familial adjustment.

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Section: Overall Satisfaction With Health-caresupporting

confidence: 87%

Section: Introductionmentioning

confidence: 99%

Satisfaction With Health Care in Families Following a Diagnosis of Cleft Lip and/or Palate in the United Kingdom

Costa

White

Stock

2019

The Cleft Palate-Craniofacial Journal

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“…Although most studies in the broader literature have focused on the development of resilience in individuals, recent calls have been made to adopt a systemic approach, in which the resources of the whole family unit are considered (Walsh, 2016). Previous research has demonstrated the importance of the relationship between parents of children with CL/P for family well-being (Zeytinoğlu et al, 2016; Stock et al, 2019), in addition to the positive contribution that wider members of the family, such as grandparents and siblings, can make (Stock et al, 2016; Guest et al, 2019). Further exploration of the factors contributing to family resilience is needed, alongside trials of interventions shown to be effective in the general population that may be applicable in CL/P.…”

Section: Discussionmentioning

confidence: 99%

Promoting Psychosocial Adjustment in Individuals Born With Cleft Lip and/or Palate and Their Families: Current Clinical Practice in the United Kingdom

Stock

Zucchelli

Hudson

et al. 2019

The Cleft Palate-Craniofacial Journal

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Objectives: The importance of psychosocial aspects of care has received growing recognition in recent years. However, the evidence base for psychosocial intervention remains limited. Specialist clinicians working in cleft lip and/or palate (CL/P) services hold a wealth of knowledge and experience yet to be elicited. The aims of this study were to identify common psychosocial challenges and potential risk and/or protective factors for psychosocial distress from the perspective of specialist clinicians and to establish the types of interventions currently being delivered in practice. Design: Individual interviews with 17 clinical nurse specialists and 19 specialist clinical psychologists, representing all 16 UK CL/P surgical sites. Data were analyzed using inductive content analysis. Results: Numerous psychosocial challenges affecting individuals with CL/P and their families were identified across the life span. Risk factors were predominantly contextual in nature, while protective factors appeared amenable to intervention. Participants drew upon a range of therapeutic models and approaches to guide formulation and intervention, while acknowledging the lack of evidence to support these approaches in CL/P populations specifically. Conclusions: Findings have important implications for the way in which psychosocial support for CL/P and related conditions is delivered and evaluated. A framework for the standardized assessment of holistic individual and familial well-being is proposed. Suggestions for increasing the evidence base for specific psychosocial interventions are made, including enhanced family functioning; social, emotional, and appearance concerns; treatment decision-making; and screening for psychosocial and developmental issues.

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“…However, the literature also shows that having a child with healthcare needs (including CL/P) presents many challenges for parents, which can have a considerable impact on quality of life (Cousino & Hazen, 2013;Nelson et al, 2012;Smith, Cheater, & Bekker, 2015;Stock, Costa, White, & Rumsey, 2019). The cross-sectional nature of the current study resulted in an inability to identify the direction of this association.…”

Section: Mother's Concerns For Their Child's Developmentmentioning

confidence: 85%

Parent‐reported socioemotional and cognitive development in children with a cleft lip and/or palate at 18 months: Findings from a UK birth cohort

Costa

White²,

Kiff

et al. 2020

Child

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Background: One of the most common congenital conditions in the world, cleft lip and/or palate (CL/P) has been shown to potentially impact long-term physical and developmental outcomes in affected children. However, little is known about the factors that contribute to such outcomes, and there is a lack of consensus about which screening tools may be most effective. The aims of the current study were (a) to assess parent-reported socioemotional and cognitive development in children born with CL/P at 18 months of age; (b) to identify factors associated with the incidence of developmental concerns; and (c) to assess the utility of the widely recommended Ages and Stages Questionnaires (ASQs) in identifying developmental concerns from an early age in the CL/P population. Methods: Parent-reported questionnaire data were extracted from The Cleft Collective Cohort Study for 322 mothers of children with CL/P aged 18 months. Results: Mean scores across both ASQ measures indicated typical development in the study sample overall. However, 31.1% of children met a referral criterion on at least one domain. Child-related risk factors included problems with physical development and feeding method. Parent-related risk factors included the mother's levels of anxiety and depression and mother's marital status. Additional developmental concerns extracted from mothers' qualitative data included feeding difficulties, speech development, sleep patterns, aggressive behaviours, vision, oral health, hearing, breathing and motor skills. Conclusions: The majority of children in this study were developing as expected at 18 months of age. However, parent-reported developmental concerns were identified in a minority of children, suggesting a need to screen for potential risk factors in routine practice. Further, the ASQ appears to offer a viable option in the early identification of developmental concerns in children with CL/P. A combined medical and systemic approach to healthcare is recommended to support the prevention of long-term developmental concerns in the child and poor psychological adjustment in parents.

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Risk and Protective Factors for Psychological Distress in Families Following a Diagnosis of Cleft Lip and/or Palate

Cited by 41 publications

References 53 publications

Satisfaction With Health Care in Families Following a Diagnosis of Cleft Lip and/or Palate in the United Kingdom

Satisfaction With Health Care in Families Following a Diagnosis of Cleft Lip and/or Palate in the United Kingdom

Promoting Psychosocial Adjustment in Individuals Born With Cleft Lip and/or Palate and Their Families: Current Clinical Practice in the United Kingdom

Parent‐reported socioemotional and cognitive development in children with a cleft lip and/or palate at 18 months: Findings from a UK birth cohort

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