Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 10. Parental perceptions of appearance and treatment outcomes in their 5-year-old child

Feragen, Kristin Billaud; Semb, Gunvor; Heliövaara, Arja; Lohmander, Anette; Johannessen, Emma Christine; Boysen, Betty Marie; Havstam, Christina; Lundeborg, Inger; Nyberg, Jill; Pedersen, Nina Helen; Bogh-Nielsen, Joan; Eyres, Philip; Bradbury, Eileen; Rumsey, Nichola

doi:10.1080/2000656x.2016.1254642

Cited by 15 publications

(9 citation statements)

References 29 publications

(51 reference statements)

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“…On the whole, participants in the current study reported a high level of satisfaction with the health-care that they and their child had received following a diagnosis of CL/P. 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: Discussionsupporting

confidence: 91%

“…This may reflect the understanding that health-care satisfaction can be a challenging construct to measure, and that the collation of “total scores” often results in a “ceiling effect” (Moret et al, 2007). Although previous findings suggest that parents rate CL/P health-care positively on the whole (Damiano et al, 2006; Nelson & Kirk, 2013; Feragen et al, 2017), the views of parents who are less satisfied remain unheard, and knowledge of which particular aspects of care parents are satisfied and dissatisfied with is scarce.…”

Section: Introductionmentioning

confidence: 96%

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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: Discussionsupporting

confidence: 91%

Section: Introductionmentioning

confidence: 96%

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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“…Several studies have investigated the social and emotional difficulties among parents caring for children with clefts, such as anxiety, depression and poor psychological 'adjustment' [4,[9][10][11]. However, there is still a lack of studies investigating these experiences faced by parents and/or caregivers of children with CL/P in Brazil.…”

Section: Introductionmentioning

confidence: 99%

Parents' Emotional and Social Experiences of Caring a Child with Cleft Lip and/or Palate

Carvalho

Matos

Belchior

et al. 2021

Pesqui. Bras. Odontopediatria Clín. Integr.

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Objective: To evaluate the emotional and social experiences of parents or caregivers of children with cleft lip and/or palate (CL/P) in a city in the Northeastern of Brazil. Material and Methods: A quantitative and cross-sectional study was conducted among parents or caregivers of children with CL/P by interviews based on a questionnaire. Interviews were conducted during the First Smile Project in Sobral, Ceará, Brazil. All participants (n=41) agreed to participate in the interview and signed an informed consent. The data was analyzed in SPSS software version 22.0. Results: The majority of participants were female (87.2%), with a mean age of 37 years, with a low level of education and low family income. The great majority (90.2%) of the parents were not prenatally diagnosed to have CL/P babies. Of those interviewed, 56.1% mentioned that the first diagnosis of cleft lip and palate was not presented by the professionals in a clarifying way to the family. Fear (36.6%) and sadness (19.5%) were the main feelings experienced when the child was diagnosed with fissure. Feeding (48.8%) was pointed out as the main concern in caring for a child with CL/P. Conclusion:The parents and caregivers interviewed faced important emotional and social problems that must be addressed by the professional team that assists the child with CL/P.

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“…Prior research has indicated that families value health professionals’ expertise and interpersonal skills, as well as the continuity and coordination of care (Knapke et al, 2010; Nelson and Kirk, 2013). Although the service provided by the specialist craniofacial teams is consistently highly rated (Nelson and Kirk, 2013; Feragen et al, 2017), previous research has demonstrated parental dissatisfaction with the care delivered by nonspecialist health professionals. During the diagnostic experience, parents have reported a lack of knowledge among nonspecialists about these conditions and their long-term implications, and/or the delivery of inaccurate, inconsistent, or overwhelming information (Stock and Rumsey, 2015; Searle et al, 2016; Searle et al, 2018; Costa et al, 2019; Stock et al, 2019b).…”

Section: Introductionmentioning

confidence: 99%

Provision of Care for Families Affected by Craniofacial Conditions: The Views of Nonspecialist Health Professionals

Stock

Costa

2019

The Cleft Palate-Craniofacial Journal

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Objective: A diagnosis of a congenital craniofacial condition can have a significant impact on the psychological well-being of the affected family. As the first health professionals likely to come into contact with families, nonspecialists, such as diagnostic sonographers, midwives, and health visitors play a crucial role in facilitating familial adjustment. Yet, previous research has demonstrated parental dissatisfaction with the care delivered by nonspecialists. The aim of this study was to investigate the provision of care for families affected by craniofacial conditions from the perspective of nonspecialist health professionals, with a view to informing the development of educational materials. Design: Individual semistructured telephone interviews (n = 14) were conducted with 3 diagnostic sonographers, 2 fetal medicine consultants, 3 midwives, 4 health visitors, and 2 children’s nurses. Results: Participants identified a range of barriers to the delivery of optimal care, including dealing with parental reactions, time pressure, hospital protocols and resources, a lack of contact with specialist craniofacial teams, and the emotional impact of delivering a diagnosis. Most participants had received no prior training in the area of congenital craniofacial conditions, while those who had felt current training materials were insufficient. All participants expressed a desire for further training and provided guidance regarding preferred content and format. Conclusions: This study provides insight into the challenges faced by nonspecialists, as well as a range of information and training needs that could improve their knowledge and confidence. Suggestions for the development of educational materials for nonspecialist health professionals are made.

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Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 10. Parental perceptions of appearance and treatment outcomes in their 5-year-old child

Cited by 15 publications

References 29 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

Parents' Emotional and Social Experiences of Caring a Child with Cleft Lip and/or Palate

Provision of Care for Families Affected by Craniofacial Conditions: The Views of Nonspecialist Health Professionals

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