Parental Evaluation of Informing Interviews for Cleft Lip and/or Palate

Byrnes, Abigail L; Berk, Nancy W.; Cooper, Margaret E.; Marazita, Mary L.

doi:10.1542/peds.112.2.308

Cited by 46 publications

(30 citation statements)

References 17 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Clinically, parents report vivid recollections and strong opinions regarding the diagnostic process, often months or years after the diagnostic event. This has now been borne out in at least a few research studies attempting to better understand parents' response to the diagnostic process (eg, Byrnes et al, 2003;Strauss et al, 1995;Young et al, 2001). Inquiring about parents' recollections of the diagnostic process, their child's treatment, and their experiences in social interactions involving their child can help parents develop a narrative of their experiences, which may reduce anxiety and improve the provider-parent relationship.…”

Section: Discussionmentioning

confidence: 99%

“…That is, the point at which parents first hear about and begin to cope with their child's cleft diagnosis. There tends to be a sharp contrast between the information that parents recall being given during the diagnostic visit and the information that they desired (Byrnes, Berk, Cooper, & Marazita, 2003;Strauss et al, 1995;Young, O'Riordan, Goldstein, & Robin, 2001). In particular, Young et al (2001) found that parents expressed a desire for more information about feeding, other factors that may be associated with clefting (eg, developmental delay), and normal, as well as abnormal, findings from their child's examination (eg, "her muscle tone is normal").…”

Section: Parent Coping and Parent-child Relationshipsmentioning

confidence: 99%

See 1 more Smart Citation

Social-Emotional Development of Infants and Young Children With Orofacial Clefts

Collett

Speltz

2006

Infants & Young Children

View full text Add to dashboard Cite

Children with orofacial clefts are believed to have distinctly elevated risk for a variety of adverse social-emotional outcomes including behavior problems, poor self-concept, and parent-child relationship difficulties. This assumption has been based primarily on theories of facial appearance and social bias, a handful of empirical studies, and clinical impressions. Studies of these children have been limited by methodological problems such as diagnostic heterogeneity, ascertainment bias, and absent or poorly matched control groups. In an attempt to address at least some of these methodological problems, the longitudinal research described in this article examined the developmental course of infants with unilateral cleft lip & palate (CLP) and cleft palate only (CPO). We followed these infants to age 7, with ongoing comparisons to a demographically matched group of typical children. Outcome measures targeted child attachment, maternal/child interaction during feeding and teaching tasks, parent satisfaction with surgical outcomes, parent and teacher behavior rating scales, and child self-concept and behavioral adaptation. Although our findings have provided limited support for the hypothesis that infants and young children with CLP/CPO are at greater risk for social-emotional problems than their peers, we have found that among infants with clefts, early assessment can predict subsequent social-emotional outcomes. In this article, we review theory and data in this area of study, summarize our longitudinal findings, describe our success and failures with respect to methodological rigor, and discuss emerging research and areas for further inquiry.

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Parent Coping and Parent-child Relationshipsmentioning

confidence: 99%

Social-Emotional Development of Infants and Young Children With Orofacial Clefts

Collett

Speltz

2006

Infants & Young Children

View full text Add to dashboard Cite

show abstract

“…There are guidelines for breaking bad news (Baile et al, 2000;Rabow & McPhee, 1999;SCOPE, 2003) and there is also evidence that many healthcare professionals are unaware of them (Fallowfield, 1993;Byrnes et al, 2003). Therefore, these guidelines need to be made available to primary care providers so that they can develop good practice for working with families where pregnancy, birth and infancy / childhood are more challenging.…”

Section: Implications For Practicementioning

confidence: 99%

“…Parental dissatisfaction with the diagnostic process for CLP can be avoided (Krahn et al;1993) especially if existing differences between health professionals' perceptions of parental information needs and actual parental preferences can be reconciled (Byrnes et al, 2003;Berk et al, 1999). While we acknowledge that in-depth training on all congenital and developmental disorders is unrealistic we believe that basic training about CLP and other …”

Section: Implications For Practicementioning

confidence: 99%

Health professional communication and the diagnosis and care of infants born with cleft lip and palate in the U.K.

Searle

Ryan

Waylen

2016

Journal of Neonatal Nursing

View full text Add to dashboard Cite

show abstract

“…In addition, some studies have highlighted the importance of information provision by experienced professionals (Strauss et al, 1995;Oliver and Jones, 1997;Young et al, 2001;Byrnes et al, 2003;Johansson and Ringsberg, 2004;Cleft Lip and Palate Association, 2007). Studies have discovered that parents may prefer to receive information orally, with written information or recordings of meetings as a supplement (Semb et al, 2005;Cartwright and Magee, 2006;Knapke et al, 2010).…”

Section: Parents' Information Needsmentioning

confidence: 99%

Parents' Perspectives of Cleft Lip and/or Palate Services: A Qualitative Interview

Nelson

Kirk

2013

The Cleft Palate-Craniofacial Journal

View full text Add to dashboard Cite

The study aimed to explore in depth the perspectives of parents about their child's cleft services. Purposive and theoretical sampling produced a diverse sample of mothers and fathers with children aged 20 weeks to 21 years. Parents were recruited from a specialist cleft center in the U.K. Qualitative, in-depth, face-to-face interviews were carried out with 35 parents. Interviews were audio-recorded, transcribed, and analyzed using grounded theory to identify salient data categories. Findings revealed that parents' positive views about services rested on their perceptions of cleft-care practitioners as competent and trustworthy, possessing highly developed communication skills and the ability to provide continuity of care to families. At the same time, some mothers and fathers identified unmet support needs relating to information delivery and content as well as the coordination of services across the treatment course. More individualized information about treatment was desired; in particular, some parents had incomplete information about their child's surgical procedures, associated risks, and postsurgical recovery. Parents wanted better coordination of services with regard to communication about surgical cancellations, a child's transition to adult services, and having a key professional to link with throughout their child's treatment course. Routine assessments to gauge parents' needs could be built into cleft-care pathways so that more individualized information and support might be delivered to families in more consistent ways over long-term treatment.

show abstract

Parental Evaluation of Informing Interviews for Cleft Lip and/or Palate

Abstract: Parents are dissatisfied with several aspects of informing interviews for cleft lip and/or palate. The results of this study suggest ways to improve informing interviews for oral-facial clefts and other congenital anomalies.

Cited by 46 publications

References 17 publications

Social-Emotional Development of Infants and Young Children With Orofacial Clefts

Social-Emotional Development of Infants and Young Children With Orofacial Clefts

Health professional communication and the diagnosis and care of infants born with cleft lip and palate in the U.K.

Parents' Perspectives of Cleft Lip and/or Palate Services: A Qualitative Interview

Contact Info

Product

Resources

About