A study to assess the effectiveness of a professional and lay support service for parents of new-born cleft babies

Turner, Monica M.; Milward, T.M.

doi:10.1016/0007-1226(88)90169-5

Cited by 4 publications

(3 citation statements)

References 4 publications

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“…Research suggests that parents have confidence in cleft clinicians because of their specialism (Johansson & Ringsberg 2004;Semb et al 2005; Cleft Lip and Palate Association 2007) and that they have concerns about the lack of knowledge among generic healthcare staff (Turner & Milward 1988;Cleft Lip and Palate Association 1996;Oliver & Jones 1997;Johansson & Ringsberg 2004;Martin 2005;Cartwright & Magee 2006). Parents have highlighted the importance of having practitioners who communicate well and show sensitivity (Broder & Trier 1985;Cleft Lip andPalate Association 1996, 2007;Jeffery & Boorman 2001;Byrnes et al 2003;Semb et al 2005;Cartwright & Magee 2006) and have identified continuity of care from specialist cleft clinicians as especially valuable (Cleft Lip and Palate Association 1996;Canady et al 1997).…”

Section: Experiences Of Service Organization Delivery and Outcomesmentioning

confidence: 99%

Parents' experiences of caring for a child with a cleft lip and/or palate: a review of the literature

Nelson

Glenny

Kirk

et al. 2011

Child

151

177

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This review brings together for the first time the existing quantitative and qualitative research evidence about the experiences of parents caring for a child with a cleft. It summarizes salient themes on the emotional, social and service-related experiences of parents and critiques the literature to date, comparing it with wider, selected literature from the field of children's long-term conditions, including disability. The review suggests that there are similarities and differences between the literatures, in terms of research focus and approach. Similarities are found across children's conditions in the perspectives of parents on emotional, social and service-related aspects, although much of the cleft literature is focused on the early stages of children's lives. However, the quality of cleft research to date about parents' experiences has also been variable, with a narrow emphasis on cross-sectional, deficit-orientated psychological approaches focused mainly on mothers. Despite a substantial literature, little qualitative research has examined parents' perspectives in-depth, particularly about their child's treatment journey. This contrasts with the wider children's literature, which has traditionally drawn not only on psychological approaches but also on the broader perspectives of sociology, social policy, nursing and health services research, using both qualitative and quantitative methods, often in integrated ways. Such approaches have been able to highlight a greater range of experiences from both mothers and fathers, about caring for a child with a long-term condition and views about treatment. The review identifies a lack of comparable research in the cleft field to examine parents' experiences and needs at different stages of their children's lives. Above all, research is needed to investigate how both mothers and fathers might experience the long-term and complex treatment journey as children become older and to elicit their views about decision making for cleft treatments, particularly elective surgeries.

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Section: Experiences Of Service Organization Delivery and Outcomesmentioning

confidence: 99%

Parents' experiences of caring for a child with a cleft lip and/or palate: a review of the literature

Nelson

Glenny

Kirk

et al. 2011

Child

151

177

View full text Add to dashboard Cite

show abstract

“…Findings from these studies indicate that the characteristics of clinicians who are caring for children may be of particular importance to parents. Such characteristics include their specialism (Turner and Milward, 1988; Cleft Lip and Palate Association, 1996, 2007; Oliver and Jones, 1997; Johansson and Ringsberg, 2004; Semb et al, 2005; Stone et al, 2010), their communication skills (Jeffery and Boorman, 2001; Semb et al, 2005), and their sensitivity when interacting with families (Strauss et al, 1995; Byrnes et al, 2003; Cartwright and Magee, 2006; Nusbaum et al, 2008). Additionally, it has been suggested that continuity of cleft care may be highly valued by parents (Cleft Lip and Palate Association, 1996; Canady et al, 1997) because the ongoing, extended nature of relationships with practitioners instills trust in services and professionals (Johansson and Ringsberg, 2004; Semb et al, 2005; Cleft Lip and Palate Association, 2007).…”

Section: Parents' Positive Views Of Servicesmentioning

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 and Palate 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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Consultant Orthodontic Services for Cleft Patients in England and Wales

Williams

Sandy

Shaw

et al. 1996

British Journal of Orthodontics

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A postal questionnaire survey of consultant orthodontists in England and Wales was undertaken as part of a national audit of the care of children horn with cleft lip/and or cleft palate. A 100% response rate was achieved. The majority of respondents stated that they provide orthodontic treatment for cleft patients hut only 78% of these attend multi-disciplinary cleft clinics. Consultant orthodontists provide treatment not only in the form of appliances for patients born with clefts hut are also involved in the counseling of parents and coordination of regional data bases. Only 24% of hospital orthodontists are involved in the provision of presurgical appliances for cleft babies on a regular basis. The lack of rationalisation of orthodontic services and a low uptake of standardised record keeping protocols for cleft patients by consultant orthodontists gives cause for concern.

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A study to assess the effectiveness of a professional and lay support service for parents of new-born cleft babies

Cited by 4 publications

References 4 publications

Parents' experiences of caring for a child with a cleft lip and/or palate: a review of the literature

Parents' experiences of caring for a child with a cleft lip and/or palate: a review of the literature

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

Consultant Orthodontic Services for Cleft Patients in England and Wales

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