Prenatal cleft lip and palate parent programme – phase 1

Martin, Vanessa

doi:10.12968/bjom.2005.13.2.17467

Cited by 5 publications

(3 citation statements)

References 3 publications

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“…This was further enhanced by the blames from husband and family. These findings echoed those of Martin (2005). One study showed that women experienced greater psychological pain than men following a positive prenatal diagnosis of fetal impairment (Sandelowski & Barroso, 2005).…”

Section: Discussionmentioning

confidence: 86%

A Qualitative Study of Psychosocial Factors Affecting Expecting Mothers Who Choose to Continue a Cleft Lip and/or Palate Pregnancy to Term

Hsieh

Yi²,

Shiao³

2013

Journal of Nursing Research

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Section: Discussionmentioning

confidence: 86%

A Qualitative Study of Psychosocial Factors Affecting Expecting Mothers Who Choose to Continue a Cleft Lip and/or Palate Pregnancy to Term

Hsieh

Yi²,

Shiao³

2013

Journal of Nursing Research

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“…In terms of the content of information, these studies suggest that parents need information about several issues-the implications for their child of having a cleft, what their child's future treatment program might involve, how to feed their child, and how to explain the cleft to others (Davalbhakta and Hall, 2000;Farrimond and Morris, 2004;Martin, 2005;Cartwright and Magee, 2006;Nusbaum et al, 2008). Although research focusing specifically on children's cleft surgery has been rare, indications from studies about broader issues such as quality of life and experiences of cleft lip and palate suggest that parents may find their child's cleft surgeries challenging (Eiserman, 2001;Johansson and Ringsberg, 2004;Klein et al, 2006;Stone et al, 2010;Nelson et al, 2012b;Nelson et al, 2012c).…”

Section: Parents' Information Needsmentioning

confidence: 99%

“…In terms of preferences for information provision, research suggests parents value information that is accessible, individualized, and paced around each family's needs (Turner and Milward, 1988;Martin, 1995;Cleft Lip andPalate Association, 1996, 2007;Oliver and Jones, 1997;Young et al, 2001;Farrimond and Morris, 2004;Johansson and Ringsberg, 2004;Martin, 2005;Cartwright and Magee, 2006;Nusbaum et al, 2008;Owens, 2008;Knapke et al, 2010). 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).…”

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

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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.

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The impact of participation in genetic research for families with cleft lip with and without cleft palate: a qualitative study

et al. 2014

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Despite being the most common congenital facial anomaly, little is understood about the genetic contribution to isolated clefts of the lip with or without cleft palate (CL/P). 'OzCleft', a family-based genotype/phenotype study, is investigating this further. Participation for families involves various clinical investigations of the child with the cleft, and their unaffected sibling(s) and parents. Informal feedback from individuals involved in OzCleft suggested that participation in this research programme had benefits for families. Taking a qualitative approach, this study sought to investigate this hypothesis further. Semi-structured in-depth interviews were conducted with nine parents who had participated in OzCleft. All parents described participation as a positive experience for themselves and their families. Perceived benefits included a greater appreciation of the cleft treatment experience by unaffected family members. Being involved in a genetic study raised issues for parents regarding the cause of clefting in their child. While some parents found the possibility of a genetic component reassuring, it also raised questions about the potential implications for future generations. Parents were largely unsure about how to communicate this information to their children and the predictive value of this information. This study suggests a lack of genetic understanding and/or perceived value of genetic information by parents of children with CL/P that, in turn, highlights the need for increased support from genetic health professionals in this area.

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Prenatal cleft lip and palate parent programme – phase 1

Cited by 5 publications

References 3 publications

A Qualitative Study of Psychosocial Factors Affecting Expecting Mothers Who Choose to Continue a Cleft Lip and/or Palate Pregnancy to Term

A Qualitative Study of Psychosocial Factors Affecting Expecting Mothers Who Choose to Continue a Cleft Lip and/or Palate Pregnancy to Term

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

The impact of participation in genetic research for families with cleft lip with and without cleft palate: a qualitative study

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