1. |
- Nicholls, Wendy, et al.
(author)
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Adult-Specific life outcomes of cleft lip and palate in a Western Australian cohort
- 2018
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In: The Cleft Palate-Craniofacial Journal. - 1055-6656 .- 1545-1569. ; 55:10, s. 1419-1429
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Journal article (peer-reviewed)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.
(author)
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The psychosocial impact of cleft in a Western Australian cohort across 3 age groups
- 2019
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In: The Cleft Palate-Craniofacial Journal. - 1055-6656 .- 1545-1569. ; 56:2, s. 210-221
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Journal article (peer-reviewed)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.
(author)
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Adult narratives of the psychosocial impact of cleft in a Western Australian cohort
- 2019
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In: Cleft Palate Craniofac J. - 1545-1569 (Electronic) 1055-6656 (Linking) ; 56:3, s. 373-382
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Journal article (peer-reviewed)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.
(author)
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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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In: Cleft Palate Craniofac J. - 1545-1569 (Electronic) 1055-6656 (Linking) ; 55:4, s. 487-498
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Journal article (peer-reviewed)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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