Limitations in research as experienced by cleft care specialists working in Nigeria and the use of qualitative interviews for data collection in cleft lip and palate research

Objective The aim of this study was to describe coping strategies used by parents of children with cleft palate with or without a cleft (CP ± L) during the early development of their children in El Salvador. Design Qualitative interviews were completed with 16 parents of children born with CP ± L who were 6 months to 6 years old. Parents were questioned about their emotions and coping during eight time periods: prenatal, birth, social interaction before the first surgery, the beginning of surgeries, social interaction after the first surgery, early childhood education (ECE), speech–language therapy, and formal education. Thematic analysis (TA) was used to identify coping strategies as conceptualized by Lazarus and Folkman (1984) . Results Four major themes emerged: (a) experienced emotions related to diagnosis, (b) interpretations related to the birth of a child with a cleft, (c) seeking and experiencing cleft treatment, and (d) social interaction of the children. During prenatal and birth stages, parents used emotion-focused strategies. A few hours to a week after birth, they used problem-focused strategies, which led them in search of treatment. Some parents used avoidance strategies during periods of social interaction before surgery, ECE, and formal education. Socioeconomic challenges impacted access to speech–language therapy. Sociocultural factors, such as discrimination, religion, and folk beliefs, appeared to influence some of the coping strategies used by parents. Conclusions Problem-focused strategies appear to be helpful in seeking surgical treatments. The emotion-focused strategy of avoidance seemed to have adverse effects in minimizing opportunities for social interaction prior to surgery and early education.

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International Confederation for Cleft Lip and Palate and Related Craniofacial Anomalies Task Force Report: Beyond Eurocleft

The Cleft Palate-Craniofacial Journal ◽

10.1597/14-120 ◽

2014 ◽

Vol 51 (6) ◽

pp. 146-155 ◽

Cited By ~ 9

Author(s):

Gunvor Semb ◽

Keyword(s):

Data Collection ◽

Outcome Measures ◽

Cleft Lip ◽

Cleft Lip And Palate ◽

Task Force ◽

Multidisciplinary Care ◽

Lessons Learned ◽

Outcome Studies ◽

Standards Of Care ◽

Task Force Report

The assigned objective for the Task Force Beyond Eurocleft was “to make recommendations for initiations of local and/or participation in multi-national cleft outcome studies and consist of individuals from the European experience with cleft outcome studies (Scandcleft, Eurocleft) and those who have initiated, or intend to initiate, similar studies in other geographical areas.” By May 2013 the Task Force (TF) consisted of 183 members from 59 countries. It was agreed that this initiative should be truly global and include all cleft specialties as well as representatives from cleft support groups in recognition of the huge commitment for improving cleft care worldwide. The vision for this group is to build a dynamic, well-functioning TF that will work globally and be multidisciplinary with inclusive and respectful behavior to improve care for all individuals born with cleft lip and/or palate. As there is a large diversity in needs and interest in the group a range of parallel approaches would be required depending on the experience, resources, and challenges of regions, teams, and individuals. Important ideas for future work were: (1) Work on a global survey of access, existing outcome studies, current collaborations, and lessons learned. (2) Work towards the creation of a lasting, living resource for newcomers to intercenter collaboration that is kept fresh with new reports, copies of relevant publications, model grant applications, and a list of volunteers with the right experience to provide support and guidance for new initiatives. (3) Develop simple online training modules to provide information about the benefits and principles of multidisciplinary care, collaborative data collection and auditing short and longer-term outcomes. (4) Establish subgroups that will work within all regions of the world with regional and national leaders identified. An evaluation of current standards of care should be undertaken and country/region specific remedies to optimize treatment outcome suggested. (5) Reach agreement on minimum standards of care, minimum record collection, and reach consensus on simple outcome measures in all disciplines. This should include all cleft types and all ages. These standards could be used to encourage governments to fund multidisciplinary care. (6) Teams will be encouraged to start and continue recordkeeping using simple and agreed protocols, according to agreed standards of minimum records and later share their data with other teams and then, embark on outcome studies. (7) Teams already active in research should: Create a register for cleft professionals and teams to reach agreement of contemporary and comprehensive multidisciplinary outcome measures, explore the possibilities using modern technology and plan large multi-national studies. A patient/parent centered data collection should always be included. These studies need funding. One task could also be exploring whether health care at a distance could be initiated using new technology.

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A perceptual evaluation of speech disorders in children with repaired unilateral cleft lip and palate in Hospital UniversitiSains Malaysia

Bangladesh Journal of Medical Science ◽

10.3329/bjms.v17i3.37003 ◽

2018 ◽

Vol 17 (3) ◽

pp. 470-478 ◽

Cited By ~ 1

Author(s):

Mohammad Khursheed Alam ◽

Aimi Syahidah Zulkipli ◽

Sandra Elizabeth Percival ◽

Sanjida Haque

Keyword(s):

Data Collection ◽

Cleft Lip ◽

Rating Scale ◽

Cleft Lip And Palate ◽

Medical Science ◽

Speech Disorders ◽

Speech Disorder ◽

Speech Errors ◽

Perceptual Evaluation ◽

Clinical Records

Aims and objective: The purpose of this cross sectional study was to determine the types and severity of speech disorders in children with repaired unilateral cleft lip and palate (UCLP) in Hospital Universiti Sains Malaysia (Hospital USM) and describe the inter- and intra-judge reliability of perceptual evaluation of speech disorders using GOS.SP.PASS’98 and five-point rating scale. Four children with repaired UCLP with ages ranging from 8 years old to 12 years old were included in this study. Prior to data collection, participants were contacted through telephone call from the list of patients with UCLP obtained Combined Cleft and Craniofacial Deformity Clinic (Combined clinic) in Hospital USM, Kelantan from year 2013-2015 as well as from clinical records from the database of the Record Unit of Hospital USM from year 2003-2015. Following strict inclusion criteria participant has been selected. After that, history taking was first conducted with the participant’s parents, followed by collection of participant’s speech sample and finally concluded with oral motor examination.Results: Fifty percent of the speeh samples obtained from data collection were then duplicated for use in inter-rater and intra-rater reliability investigations. Exact agreement and kappa values were used for reliability measures. Seventy-five percent (3/4) participants exhibited speech disorders and 25% (1/4) participant had no evidence of speech disorder. The type of speech errors that occurred the most in the three participants were glottal articulations (39%), while the least speech errors includedlateralizations/lateral articulations (2%), backing to velar (1%), pharyngeal articulations (1%,) active nasal fricatives (1%) as well as nasal realizations of fricatives (1%). The severity of speech disorder ranged from some occurrences to occurring always or almost alwaysin the participants. Inter-judge reliability showed poor to slight agreement while intra-judge reliability revealed almost perfect agreement.Conclusion: The results obtained from this study were more or less similar to other studies conducted on the speech outcome of individuals with repaired UCLP.It is important that referrals be made to speech-language pathologists (SLPs) to evaluate the individuals’ speech outcomes even though surgical intervention has been provided to them to ensure a comprehensive management for the individual.Bangladesh Journal of Medical Science Vol.17(3) 2018 p.470-478

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Facilitators and Barriers to Implementing Standardized Outcome Measurement for Children With Cleft Lip and Palate

The Cleft Palate-Craniofacial Journal ◽

10.1177/1055665620940187 ◽

2020 ◽

Vol 58 (1) ◽

pp. 7-18

Author(s):

Erica M. Weidler ◽

Maria T. Britto ◽

Thomas J. Sitzman

Keyword(s):

Cleft Lip ◽

Cleft Lip And Palate ◽

Care Delivery ◽

Outcome Measurement ◽

Qualitative Interviews ◽

Relative Advantage ◽

Local Context ◽

Patient Specific ◽

Cross Sectional ◽

Facilitators And Barriers

Objective: Identify facilitators and barriers to implementing standardized outcome measurement in cleft care. Design: Cross-sectional, qualitative study. Setting/Participants: Participants included 24 providers and staff from a large, multidisciplinary cleft team in the southwest United States, 5 caregivers of children with cleft palate (with or without cleft lip) treated by this team, and 3 experts involved in implementing a cleft-specific standardized outcome measurement in the United Kingdom. Interventions: Semistructured, qualitative interviews were conducted exploring perceived facilitators and barriers to implementing standardized outcome measurement in cleft care. Interviews were audio-recorded, transcribed, and analyzed for content. The Consolidated Framework for Implementation Research was used to guide the interviews and analysis. The analysis focused on the characteristics of standardized outcome measurement that directly influence its adoption. Results: Participants identified both facilitators and barriers to implementing standardized outcome measurement. Facilitators included the strength and quality of evidence supporting improvements in cleft care delivery following implementation of standardized outcome measurement and the relative advantage of standardized outcome measurement over continuing the status quo. Barriers included the difficulty adapting standardized outcome measurement to meet local context and patient-specific needs and the complexity of implementing standardized outcome measurement. Conclusions: Providers, staff, and caregivers involved in cleft care perceive multiple benefits from standardized outcome measurement, while also recognizing substantial barriers to its implementation. Results from this study can be used to guide development of an implementation strategy for standardized outcome measurement that builds upon perceived strengths of the intervention and reduces perceived barriers.

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The Development of a Regional Cleft Lip and Palate Database—A Preliminary Report

British Journal of Orthodontics ◽

10.1179/bjo.21.3.291 ◽

1994 ◽

Vol 21 (3) ◽

pp. 291-295 ◽

Cited By ~ 5

Author(s):

F. Luther ◽

P. A. Cook

Keyword(s):

Data Collection ◽

Preliminary Report ◽

Cleft Lip ◽

Cleft Lip And Palate ◽

Standard Of Care

The development of a regional cleft lip and palate database since its inception in 1988 is described. The method of data collection is outlined together with difficulties found and improvements it is hoped to achieve—both in the method of data collection and, ultimately, in the standard of care provided.

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Guidelines for the Design and Analysis of Studies on Nonsyndromic Cleft Lip and Cleft Palate in Humans: Summary Report from a Workshop of the International Consortium for Oral Clefts Genetics

The Cleft Palate-Craniofacial Journal ◽

10.1597/1545-1569_2002_039_0093_gftdaa_2.0.co_2 ◽

2002 ◽

Vol 39 (1) ◽

pp. 93-100 ◽

Cited By ~ 18

Author(s):

Laura E. Mitchell ◽

Terri H. Beaty ◽

Andrew C. Lidral ◽

Ronald G. Munger ◽

Jeffrey C. Murray ◽

...

Keyword(s):

Data Collection ◽

Cleft Palate ◽

Cleft Lip ◽

Cleft Lip And Palate ◽

A Priori ◽

Molecular Genetic ◽

Genetic Studies ◽

Oral Clefts ◽

International Consortium ◽

Data Collection And Analysis

Objective The members of the International Consortium for Oral Clefts Genetics recognize the need for collaboration between researchers involved in etiologic studies of nonsyndromic cleft lip and palate and cleft palate. To address this need, the consortium established four working subcommittees: diagnostic and phenotypic assessment, molecular genetic studies, epidemiologic data collection and analysis, and genetic data collection and analysis. These subcommittees were charged with the development of guidelines for data collection and analysis that would facilitate both a priori and a posteriori comparisons and pooling of data from multiple centers. This report presents summary statements of the four subcommittees.

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Treating Velopharyngeal Inadequacy Using Bilateral Buccal Flap Revision Palatoplasty

Perspectives of the ASHA Special Interest Groups ◽

10.1044/2019_pers-sig5-2019-0005 ◽

2019 ◽

Vol 4 (5) ◽

pp. 878-892

Author(s):

Joseph A. Napoli ◽

Linda D. Vallino

Keyword(s):

Systematic Review ◽

Obstructive Sleep Apnea ◽

Sleep Apnea ◽

Cleft Lip ◽

Cleft Lip And Palate ◽

A Priori ◽

Sufficient Evidence ◽

Obstructive Sleep ◽

Before And After ◽

Buccal Flap

Purpose The 2 most commonly used operations to treat velopharyngeal inadequacy (VPI) are superiorly based pharyngeal flap and sphincter pharyngoplasty, both of which may result in hyponasal speech and airway obstruction. The purpose of this article is to (a) describe the bilateral buccal flap revision palatoplasty (BBFRP) as an alternative technique to manage VPI while minimizing these risks and (b) conduct a systematic review of the evidence of BBFRP on speech and other clinical outcomes. A report comparing the speech of a child with hypernasality before and after BBFRP is presented. Method A review of databases was conducted for studies of buccal flaps to treat VPI. Using the principles of a systematic review, the articles were read, and data were abstracted for study characteristics that were developed a priori. With respect to the case report, speech and instrumental data from a child with repaired cleft lip and palate and hypernasal speech were collected and analyzed before and after surgery. Results Eight articles were included in the analysis. The results were positive, and the evidence is in favor of BBFRP in improving velopharyngeal function, while minimizing the risk of hyponasal speech and obstructive sleep apnea. Before surgery, the child's speech was characterized by moderate hypernasality, and after surgery, it was judged to be within normal limits. Conclusion Based on clinical experience and results from the systematic review, there is sufficient evidence that the buccal flap is effective in improving resonance and minimizing obstructive sleep apnea. We recommend BBFRP as another approach in selected patients to manage VPI. Supplemental Material https://doi.org/10.23641/asha.9919352

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