Differences in specific concerns perceived by parents of children with cleft lip and/or palate based on the types of cleft

Niinomi, Kazuteru; Ueki, Showa; Fujita, Yuichi; Kitao, Mika; Matsunaka, Eriko; Kumagai, Yukari; Ike, Miho

doi:10.1111/ipd.12886

Cited by 3 publications

(1 citation statement)

References 29 publications

(66 reference statements)

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“…The scientific literature has reported that the greater the orofacial dysfunction, the greater the impairment of the quality of life of individuals with orofacial clefts. 26,27 Of the limitations found in this study, the response system adopted can be considered. This may have resulted in the ceiling and floor effects, however, it opens up the possibility of future studies to confirm or refute this hypothesis.…”

Section: Scale (B-lsojcleft-s) the Social Stigma Related To The Prese...mentioning

confidence: 99%

Development and validation of the Brazilian Version of Lay Persons’ Social Judgements about Cleft-lip Scale (B-LSojCleft-S)

Maia,

Grimaldi,

Jural

et al. 2023

Braz. oral res.

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The aim of this study was to develop and analyze the psychometric properties of the Brazilian Version of Lay Person's Social Judgement about Cleft-lip Scale (B-LSojCleft-S). A standardized photograph of a 16-year-old girl was manipulated by using photo editing software, to simulate different cleft-lip situations. The cleftfree image was used as a control. The researchers structured an initial questionnaire that was evaluated by experts and a sample of the target population to evaluate the construct. After analysis by the researchers, a final version of the B-LSojCleft-S containing 14 items was generated.Each answer was awarded score from 1 to 3 points, yielding a total score of 14 to 42 points. Higher scores represented better social judgements. The B-LSojCleft-S was applied online to 103 test participants and 73 retest participants with an interval of 20 days between application. Aspects of acceptability, discriminant property, internal consistency, reliability and construct validity were evaluated. Construct validity was assessed using the Friedman test (p < 0.05). Reliability was determined using an intraclass correlation coefficient > 0.70, and internal consistency using Cronbach's alpha > 0.81. The B-LSojCleft-S showed high acceptability, strong discriminant property, excellent internal consistency and reliability, but had a floor and ceiling effect. The instrument reached valid and reliable scores and had acceptable psychometric properties to evaluate the social judgments of lay persons about different cleft lip situations in a Brazilian population.

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Section: Scale (B-lsojcleft-s) the Social Stigma Related To The Prese...mentioning

confidence: 99%

Development and validation of the Brazilian Version of Lay Persons’ Social Judgements about Cleft-lip Scale (B-LSojCleft-S)

Maia,

Grimaldi,

Jural

et al. 2023

Braz. oral res.

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How Does CLEFT-Q Change the Way We Practice? A Prospective Study Integrating Patient-Reported Outcomes

Salinero,

Cheung,

Villavisanis

et al. 2023

Plastic &Amp; Reconstructive Surgery

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Objective: The CLEFT-Q is a validated instrument designed to elicit patient-reported outcomes among people affected by cleft lip and/or palate. However, it has not been reported how use of CLEFT-Q data alters routine cleft care. This study analyzed the impact of CLEFT-Q data integration on patient care and clinical decision making. Methods: Patients were sequentially, prospectively evaluated during scheduled cleft team visits. The CLEFT-Q was completed prior to the clinic encounter but results were initially masked from the surgeon and family. In the encounter, a study observer characterized patients’ verbalized attitudes across seven specific domains of appearance and function and the provisional assessment and plan was noted. CLEFT-Q data was then introduced in the clinical encounter and discussed. Discordance between patients’ initially verbalized attitudes and their self-reported scores on the CLEFT-Q was documented along with any resultant modifications to their care plan. Results: Seventy patient visits were observed; mean patient age was 12.7 years (range 8-19). Forty-one patients (59%) had cleft lip and palate/alveolus and 29 (41%) had isolated cleft palate. Discordance was observed in 36% of visits and in 9.2% of specific domains assessed. Highest discordance rates were observed in domains of psychosocial function (12.5%,) speech function/distress (11.6%,) and lips/lip scar appearance (11.6%). No age group or gender was associated with increased discordance. Integration of CLEFT-Q results altered the assessment and plan in 11 (16%) visits. Conclusions: The CLEFT-Q provides clinically-relevant insight into patient perspectives that are not captured by routine interview and examination alone, and regularly leads to a change in the management plan.

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Caring for a Child with a Cleft Lip and/or Palate: A Narrative Review

Stock,

Blaso,

Hotton

2024

The Cleft Palate Craniofacial Journal

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Raising a child with healthcare needs places additional demands on caregivers. In 2012, Nelson and colleagues authored a review of 57 papers pertaining to parents’ experiences of caring for a child with cleft lip and/or palate (CL/P). Thanks in large part to this review, available literature on this topic has grown considerably. The aim of the present review was to update and critically appraise recent literature, with the wider goal of assessing progress in the field and setting recommendations for future work. All original, peer-reviewed articles pertaining to the psychological adjustment of parents of children with CL/P living in high-income countries (published May 2009 to May 2024) were examined. A total of 126 articles were included. Findings were narratively synthesised according to three salient themes: Emotional Impact; Social Experiences; and Care Delivery. Recent research has built on Nelson et al.'s recommendations, addressing some prior gaps in knowledge. Nonetheless, some areas remained largely unexplored and critical methodological limitations were still evident. Recommendations for clinical practice include: improved informational resources for parents and non-specialist health professionals, regular audit of services in collaboration with parents and families, routine psychological screening for known risk factors and integrated psychological support from diagnosis onward. Recommendations for future research include the design of multicentre, prospective, longitudinal studies with sufficient sample sizes and appropriate control/reference groups, inclusion of families from diverse ethnic and socioeconomic backgrounds, further examination of factors contributing to psychological growth, the development and evaluation of psychological interventions, and cross-condition learning.

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Differences in specific concerns perceived by parents of children with cleft lip and/or palate based on the types of cleft

Cited by 3 publications

References 29 publications

Development and validation of the Brazilian Version of Lay Persons’ Social Judgements about Cleft-lip Scale (B-LSojCleft-S)

Development and validation of the Brazilian Version of Lay Persons’ Social Judgements about Cleft-lip Scale (B-LSojCleft-S)

How Does CLEFT-Q Change the Way We Practice? A Prospective Study Integrating Patient-Reported Outcomes

Caring for a Child with a Cleft Lip and/or Palate: A Narrative Review

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