| 1. |
- Nicholls, Wendy, et al.
(författare)
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Adult-Specific life outcomes of cleft lip and palate in a Western Australian cohort
- 2018
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Ingår i: The Cleft Palate-Craniofacial Journal. - 1055-6656 .- 1545-1569. ; 55:10, s. 1419-1429
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: People with a cleft of the lip and/or palate (CL/P) differ from their peers due to their facial appearance, hearing and speech difficulties, and the significant time spent attending appointments and recovering from surgical interventions. These differences may impact life outcomes including occupation, income, education, relationships, psychosocial health issues, and lifestyle choices.METHODOLOGY: A self-administered questionnaire was posted to 338 former and current patients of the Cleft Lip and Palate Unit of Princess Margaret Hospital (PMH), Perth, Western Australia.RESULTS: Completed questionnaires were returned by 158 former and current patients. In comparison to the Australian Bureau of Statistics, study participants attained equivalent highest education levels, full-time annual income levels, occupational categories, employment rates, and home ownership levels. They did not marry later and demonstrated positive health-related lifestyle behaviors. However independent living was significantly delayed, and the number of romantic relationships, marriages, and children was lower, with separation/divorce rates also being lower. A key finding was that 78% of participants self-reported that they experienced at least 1 psychosocial health issue and more than half experienced anxiety and/or depression.CONCLUSION: When comparing the sociological outcomes for the study participants, the psychosocial outcomes were the areas of most concern. Further investigation is required to determine the causes for the high self-reported rates of anxiety and/or depression found in this study.
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| 2. |
- Nicholls, Wendy, et al.
(författare)
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The psychosocial impact of cleft in a Western Australian cohort across 3 age groups
- 2019
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Ingår i: The Cleft Palate-Craniofacial Journal. - 1055-6656 .- 1545-1569. ; 56:2, s. 210-221
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND:: Management of a cleft of the lip and/or palate (CL/P) involves a multidisciplinary team approach lasting from birth to potentially postskeletal maturity. This condition is complex, with both medical and psychosocial implications that may place individuals with a cleft at higher risk of developing psychosocial problems.METHODOLOGY:: A self-administered questionnaire was completed by a sample from the Western Australian cleft population comprising 3 age groups: child (n = 100), adolescent (n = 101), and adult (n = 158).RESULTS:: Public speaking, being photographed, special relationships, and participation in school were identified as the areas most impacted by having a cleft. Hearing and speech were reported to have a higher importance than facial and dental appearance. Participants rated support given to them by their parents as the most important, with high ratings for treatment providers. For teasing, the impact of cleft was significantly higher among participants with cleft lip and palate for both the adolescent and adult age groups. There was little significant difference by gender across the variables, which suggests that males are just as likely to require support as females.CONCLUSION:: The impact of a cleft across multiple psychosocial domains needs to be recognized and addressed as part of craniofacial team care across age groups.
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| 3. |
- Nicholls, W., et al.
(författare)
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Adult narratives of the psychosocial impact of cleft in a Western Australian cohort
- 2019
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Ingår i: Cleft Palate Craniofac J. - 1545-1569 (Electronic) 1055-6656 (Linking) ; 56:3, s. 373-382
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Living with a cleft condition involves many years of multidisciplinary therapy, treatment, and surgical intervention. This complex process may have both physical and psychosocial long-term impacts. There is limited evidence of the psychosocial impact of cleft on individuals in Australia. AIM: To obtain an understanding of the adult patient perception of having a cleft and explore the impact of the condition on their lives. DESIGN: Qualitative methodologies at one case study site in Western Australia. Population of Interest: Adults with a cleft lip and/or palate (CL/P) who had received treatment at Princess Margaret Hospital, the only treatment center for cleft in Western Australia. METHODOLOGY: Individual in-depth semi-structured qualitative interviews were conducted and recorded and transcribed for analysis. RESULTS: Fifteen adults with a CL/P. Two main themes were identified: lived experience (with 3 subthemes: normality, support networks, and impacts in later life) and advice to others. The majority of participants reported social rejection and isolation, which occurred mostly at school and in some instances at home, but did not often last into adulthood. The greatest protective factor was the support of family and friends, which if missing during their childhood, was desired and appreciated in adulthood. CONCLUSION: Adults with CL/P may require psychosocial support from their cleft team including referral to clinicians in adult services. There is also the need for earlier psychological interventions and social programs to support those with appearance-related social difficulties.
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| 4. |
- Nicholls, W., et al.
(författare)
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Body esteem in a Western Australian cleft lip and/or palate cohort across 3 age groups
- 2018
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Ingår i: Cleft Palate Craniofac J. - 1545-1569 (Electronic) 1055-6656 (Linking) ; 55:4, s. 487-498
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: To determine if patients with cleft lip and/or palate (CL/P) from a Western Australian (WA) cohort were more dissatisfied with their body esteem than a normative non-cleft cohort, and identify demographic variables that may have significant associations with body esteem. DESIGN: Questionnaire study using the Body-Esteem Scale (BES) and Cleft Research Questionnaire (CRQ). PARTICIPANTS: Self-selected participants from a Western Australian CL/P population across 3 age groups (n=359). MAIN OUTCOME MEASURES: The BES is comprised of 3 factors: BE-Appearance, BE-Weight and BE-Attribution. Study mean BES factor scores were compared to normative non-cleft scores. Regression analysis was used to determine significant associations within each age group between BES factor scores and CRQ variables of: gender, self-reported body weight category, cleft type and importance of facial appearance rating. RESULTS: Study mean BE-Attribution scores were significantly lower than the normative scores and significantly lower than the mean BE-Appearance and BE-Weight factor scores within the same age groups of this study. Having a cleft type of lip and palate, being overweight, and placing a high importance on facial appearance had significant negative associations with BES scores. Maintaining a normal body weight and placing a lower level of importance on facial appearance had significant positive associations. Gender had no significant associations. CONCLUSION: In this study, the attribution aspect of body esteem had a greater negative impact on patients than their appearance and body weight. This has important implications for clinical treatment and support of patients.
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| 5. |
- Norman, A., et al.
(författare)
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The effectiveness of psychosocial intervention for individuals with cleft lip and/or palate
- 2015
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Ingår i: Cleft Palate Craniofac J. - 1545-1569 (Electronic) 1055-6656 (Linking) ; 52:3, s. 301-10
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: The aim of this review was to assess the effectiveness of different psychological interventions for children and adults with cleft lip and/or palate and their parents. DESIGN: We searched six databases including MEDLINE and EMBASE to June 2013 and checked bibliographies. We included research that evaluated any psychological intervention in studies in which at least 90% of the participants had cleft lip and/or palate or were parents of those with cleft lip and/or palate. Studies containing less than 90% were excluded unless they reported results separately for those with cleft lip and/or palate, or raw data were available upon request from the authors. Inclusion assessment, data extraction, and risk of bias assessment were carried out independently by two reviewers. RESULTS: Seven studies were identified as inclusions, with only two studies being included in the full data analysis (one of which failed to meet the full inclusion criteria). The five remaining studies were included only in a narrative synthesis because data were available for people or parents of those with cleft lip and/or palate only. This highlights a distinct dearth of research into psychological intervention within the field of cleft lip and/or palate. CONCLUSIONS: The review found no evidence to support any specific intervention. Key uncertainties need to be identified and addressed. Adequately powered, methodologically rigorous randomized controlled trials are needed to provide a secure evidence base for psychological intervention techniques in participants with cleft lip and/or palate and their parents.
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| 6. |
- Persson, Martin, 1971-, et al.
(författare)
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Female and male differences in academic achievement in individuals with cleft : a population-based register study
- 2018
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Ingår i: Cleft Palate Craniofac J. - 1545-1569 (Electronic) 1055-6656 (Linking) ; 55:2, s. 196-203
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: The focus of this study was to determine if there is any significant difference in academic achievement for girls and boys with a cleft compared to the general population of Swedish students at graduation from compulsory school. DESIGN: A retrospective population-based study using data obtained from the Swedish Medical Birth Register that was linked to the Swedish School-Grade Register. PARTICIPANTS: Two hundred seventy girls and 241 boys with cleft palate (CP), 222 girls and 429 boys with cleft lip (CL), and 299 girls and 531 boys with cleft lip and palate (CLP) were compared with the compulsory school population comprising 609,397 girls and 640,007 boys. MAIN OUTCOME MEASURES: (1) Odds of receiving the lowest grade and reduced odds in receiving high grades in Mathematics, English, and Swedish. (2) grade point average (GPA). RESULTS: In all 3 subject grades, for boys with cleft there was no difference when compared to the male population. Girls with cleft were similar to their peers with a few exceptions. Girls with CLP had lower Math grades, and girls with CP had lower Math, English, and Swedish grades. Girls with CP and CLP achieved a significantly lower GPA in comparison to the female population and boys with CP and CL achieved lower GPAs in comparison to the male population. CONCLUSIONS: This study indicates that educational outcomes for girls with cleft are more negatively affected than for boys with cleft.
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| 7. |
- Persson, Martin, 1971-, et al.
(författare)
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To the editor
- 2014
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Ingår i: Cleft Palate Craniofac J. - 1545-1569 (Electronic) 1055-6656 (Linking) ; 51:3, s. 367-8
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Tidskriftsartikel (refereegranskat)
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| 8. |
- Scott, J. K., et al.
(författare)
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Centralization of services for children born with orofacial clefts in the United kingdom : a cross-sectional survey
- 2014
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Ingår i: Cleft Palate Craniofac J. - 1545-1569 (Electronic) 1055-6656 (Linking) ; 51:5, s. e102-9
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Tidskriftsartikel (refereegranskat)abstract
- Objective : To examine current provision of cleft lip and/or palate services in the U.K. and compliance with recommendations made by the Clinical Standards Advisory Group (CSAG) in 1998. Design : Cross-sectional questionnaire survey. Setting : All 11 services within the U.K. providing care for children born with a cleft lip and palate. Participants : Members from each healthcare specialty in each U.K. cleft team. Interventions : Self-administered postal questionnaires enquired about the provision of cleft services. Data were collected about the overall cleft service, team coordination, hearing, orthodontics, pediatric dentistry, primary cleft surgery, psychology, restorative dentistry, secondary surgery, specialist cleft nursing, and speech and language therapy. Results : Questionnaires were returned from members of 130/150 cleft teams (87%) and these showed that U.K. cleft services have been restructured to 11 centralized services with 17 primary operative sites and 61 peripheral sites. All services provide care through a multidisciplinary (MDT) model, but the composition of each team varies. Primary cleft surgery and orthodontics were the only specialties that were represented in all cleft teams. Specialties may be represented in a team but their attendance at MDT clinics is variable. Only one team met all of the CSAG recommendations. Conclusions : Our survey shows that cleft services have centralized over the last 10 years, and an MDT model of care has been adopted. Further research is needed to show how this has influenced outcomes and to see whether some models of centralized care are associated with better outcomes.
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| 9. |
- Scott, J. K., et al.
(författare)
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Perceptions of team members working in cleft services in the United Kingdom : a pilot study
- 2015
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Ingår i: Cleft Palate Craniofac J. - 1545-1569 (Electronic) 1055-6656 (Linking) ; 52:1, s. e1-7
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Cleft care provision in the United Kingdom has been centralized over the past 15 years to improve outcomes for children born with cleft lip and palate. However, to date, there have been no investigations to examine how well these multidisciplinary teams are performing. METHODS: In this pilot study, a cross-sectional questionnaire surveyed members of all health care specialties working to provide cleft care in 11 services across the United Kingdom. Team members were asked to complete the Team Work Assessment (TWA) to investigate perceptions of team working in cleft services. The TWA comprises 55 items measuring seven constructs: team foundation, function, performance and skills, team climate and atmosphere, team leadership, and team identity; individual constructs were also aggregated to provide an overall TWA score. Items were measured using five-point Likert-type scales and were converted into percentage agreement for analysis. RESULTS: Responses were received from members of every cleft team. Ninety-nine of 138 cleft team questionnaires (71.7%) were returned and analyzed. The median (interquartile range) percentage of maximum possible score across teams was 75.5% (70.8, 88.2) for the sum of all items. Team performance and team identity were viewed most positively, with 82.0% (75.0, 88.2) and 88.4% (82.2, 91.4), respectively. Team foundation and leadership were viewed least positively with 79.0% (72.6, 84.6) and 76.6% (70.6, 85.4), respectively. CONCLUSIONS: Cleft team members perceive that their teams work well, but there are variations in response according to construct.
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| 10. |
- Stock, N. M., et al.
(författare)
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Opportunities and challenges in establishing a cohort study : an example from cleft lip/palate research in the United Kingdom
- 2016
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Ingår i: Cleft Palate Craniofac J. - 1545-1569 (Electronic) 1055-6656 (Linking) ; 53:3, s. 317-25
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Cleft lip and/or palate (CL/P) is one of the most common birth conditions in the world, but little is known about its causes. Professional opinion remains divided as to which treatments may be the most beneficial for patients with CL/P, and the factors that contribute to psychological adjustment are poorly understood. The use of different methodological approaches and tools plays a key role in hampering efforts to address discrepancies within the evidence base. A new UK-wide program of research, The Cleft Collective, was established to combat many of these methodological challenges and to address some of the key research questions important to all CL/P stakeholders. OBJECTIVE: To describe the establishment of CL/P cohort studies in the United Kingdom and to consider the many opportunities this resource will generate. RESULTS: To date, protocols have been developed and implemented within most UK cleft teams. Biological samples, environmental information, and data pertaining to parental psychological well-being and child development are being collected successfully. Recruitment is currently on track to meet the ambitious target of approximately 9800 individuals from just more than 3000 families. CONCLUSIONS: The Cleft Collective cohort studies represent a significant step forward for research in the field of CL/P. The data collected will form a comprehensive resource of information about individuals with CL/P and their families. This resource will provide the basis for many future projects and collaborations, both in the United Kingdom and around the world.
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