A Qualitative Analysis of Factors Impacting Comprehensive Cleft Lip and Palate Care in Ghana

Sommer, Chelsea L.; Wankier, Ali P.; Obiri‐Yeboah, Solomon; Gyamfi, S.; Frimpong, Barbara Amponsah; Dickerson, Ty

doi:10.1177/1055665620959995

Cited by 9 publications

(10 citation statements)

References 23 publications

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“…Similar to findings in parental qualitative research (Alighieri, Bettens, Vanoost et al, 2021;Lindeborg et al, 2020;Sommer et al, 2021), cleft speech intervention was considered burdensome by children if it interfered with their 'normal' daily life. Children spend a major amount of their time in school.…”

Section: Treatment Valuesmentioning

confidence: 56%

“…Albeit qualitative studies in SLPs revealed insecurities when treating children with a CP ± L, parents do not seem to notice this. In general, qualitative studies in parents reported high parental satisfaction with cleft speech and language therapy (Alighieri et al., 2022; Alighieri, Bettens, Vanoost et al., 2021; Alighieri, Peersman et al., 2020; Lindeborg et al., 2020; Sommer et al., 2021). Despite this satisfaction, some parents report specific concerns about the financial part of speech and language therapy (Alighieri, Bettens, Vanoost et al., 2021; Lindeborg et al., 2020; Sommer et al., 2021) and the implications of speech and language therapy on the absence of their children during school hours (Lindeborg et al., 2020; Sommer et al., 2021).…”

Section: Introductionmentioning

confidence: 99%

“…Evidence-based care involves three different cornerstones, namely: combining the (1) best available research evidence with (2) the clinician's perspectives and (3) the patient's perspectives (Steglitz et al, 2015). In the past years, the cleft literature has paid increasing attention to these first two cornerstones by conducting therapy studies (Alighieri, Bettens et al, 2020;Alighieri, Van Lierde et al, 2021;Scherer et al, 2008;Sweeney et al, 2020) and studies on the therapy-related perceptions of speech-language pathologists (SLPs) (Alighieri et al, 2021a(Alighieri et al, , 2021bHardin-Jones et al, 2020) and parents of children with a CP ± L (Alighieri, Bettens, Vanoost et al, 2021;Alighieri et al, 2020;Alighieri et al, 2022;Lindeborg et al, 2020;Sommer et al, 2021).…”

Section: Introductionmentioning

confidence: 99%

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‘Sometimes I feel sad’: A qualitative study on children's perceptions with cleft palate speech and language therapy

Alighieri

Bettens

Verbeke

et al. 2023

Intl J Lang & Comm Disor

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BackgroundEvidence‐based speech therapy involves the integration of (1) the scientific evidence for therapy with (2) the perspectives of clinicians concerning therapy and (3) the perspectives of patients about therapy. The cleft literature has already paid attention to the first two cornerstones of evidence‐based speech therapy. Much less is known about how children perceive cleft speech therapy.AimsThe purpose of the current qualitative study was to investigate the perceptions, emotions and expectations of Flemish‐speaking Dutch children with a cleft (lip and) palate (CP ± L), aged 5–12 years, with regard to the speech therapy they receive. In this study, a focus was made on speech therapy to eliminate compensatory cleft speech errors.Methods & ProceduresSix children with a CP ± L, aged between 5 and 12 years, were included in this study. Child‐friendly semi‐structured interviews were conducted using a participatory, art‐based qualitative approach. This means that the ‘play and puppets technique’ and ‘draw–write and photo‐elicitation technique’ were used to guide the children through the interviews. Data derived from these interviews were analysed using an inductive thematic approach. Trustworthiness of the data was achieved by applying researcher triangulation, negative case analysis and an audit trail.Outcomes & ResultsAnalyses of the interviews revealed three major themes of importance to the children: (1) treatment values, (2) treatment practices and (3) treatment outcomes. Each theme was divided into different subthemes. The theme ‘treatment values’ consisted of the subthemes expectations and emotions around therapy and interference with daily living. Information flow, therapy content, confirmation and rewards, parents’ attendance, therapy intensity, and homework were subthemes of the major theme ‘treatment practices’. The theme ‘treatment outcomes’ was divided into two subthemes, namely speech improvement and peers’ reactions.Conclusions & ImplicationsMost children had positive attitudes towards speech therapy: it was ‘something they liked’ and ‘something fun’. If children had negative attitudes they were related to having a fear of making mistakes during therapy. Children had clear expectations of the purpose of speech therapy. Speech therapy should ‘help’ improve their speech and make it more understandable to others. The children in this sample made some suggestions to decrease the experienced burden related to speech therapy. The results of this study will help to better tailor speech therapy programmes to the needs and experiences of children with a CP ± L.WHAT THIS PAPER ADDSWhat is already known on the subject Evidence‐based speech therapy involves the integration of (1) the scientific evidence for therapy with (2) the perspectives of clinicians concerning therapy and (3) the perspectives of patients and their families about therapy. The cleft literature has already paid attention to the first two cornerstones of evidence‐based speech therapy. Different studies investigated the perspectives of SLPs and parents with regard to cleft palate speech therapy. However, much less is known about the children's own experiences with and perceptions around this speech therapy.What this study adds to existing knowledge This study used a qualitative research design to investigate the perceptions, emotions and expectations of children with a cleft (lip and) palate, aged 5–12 years, with regard to the speech therapy they receive. Speech therapy needed to focus on the elimination of compensatory speech errors. This study provides knowledge on the speech therapy‐related experiences of children with a cleft palate.What are the potential or actual clinical implications of this work? Children in this sample made some concrete suggestions to decrease the experienced burden related to cleft speech therapy, for example, integration of school work during therapy sessions and practising on the level of spontaneous speech. The results of this study help us to better tailor speech therapy programmes to the needs and experiences of children with a CP ± L.

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Section: Treatment Valuesmentioning

confidence: 56%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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‘Sometimes I feel sad’: A qualitative study on children's perceptions with cleft palate speech and language therapy

Alighieri

Bettens

Verbeke

et al. 2023

Intl J Lang & Comm Disor

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“…Kumar [ 23 ] reported the highest incidence of depressive episodes, with 42% of parents of children with CL/P aged >10 years showing a strongly or very strongly elevated depressive disorders screening index. Sommer [ 24 ] has pointed out that mothers of children with CL/P believe their children have a negative impact on them. Their negative views and emotions are mainly derived from the long treatment times, the difficulty of treatment, the uncertainty of the infant’s future condition, and the fear of rejection.…”

Section: Discussionmentioning

confidence: 99%

Factors Associated With Perception of Stigma Among Parents of Children With Cleft Lip and Palate: Cross-Sectional Study

Zhang,

Jiang

et al. 2024

JMIR Form Res

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Background Parents of children with cleft lip with or without cleft palate (CL/P) often face stigmatization, which has a significant impact on their quality of life and mental health. However, to date, there is a lack of comprehensive, multicenter empirical research on parents of children with CL/P in China, particularly those with large-scale samples. Objective This study aimed to identify major factors that contribute to the perception of stigma experienced by parents of children with CL/P. Methods A cross-sectional survey was conducted. A total of 104 parents of children diagnosed with CL/P in 2 hospitals were selected by convenience sampling. Demographics and disease information, the Chinese Perception of Stigma Questionnaire, the Center for Epidemiological Studies Depression Scale, and the Social Anxiety Scale were used in this study. Descriptive statistics, t tests, and one-way ANOVA were used to compare the differences between participants’ demographic information and perception of stigma. Multivariable linear regression was performed to assess associations between demographic factors, social anxiety, depression, and perception of stigma. Results The mean scores for the dimensions of perception of stigma, depression, and social anxiety were 22.97 (SD 9.21), 38.34 (SD 8.25), and 22.86 (SD 6.69), respectively. Depression and social anxiety were positively associated with discrimination, while surgery status was a negatively associated variable. Parents with a college education or higher had significantly lower levels of perceived stigma compared to parents with a junior high school education (all P values <.05). These 4 factors explained 40.4% of the total model variance (F8=9.726; P<.001; R2=0.450; adjusted R2=0.404). Conclusions Our findings highlight a concerning trend of diminished quality of life among parents of children with CL/P. Factors such as parents’ education level, surgery status, depression, and social anxiety are shown to influence the level of stigma experienced. Implementing comprehensive nursing care and providing presurgical support are effective strategies for alleviating parents’ social anxiety, reducing perceived stigma, and preventing depression.

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“…Many CL/P international organizations embark on outreach trips primarily for direct cleft repairs or to establish infrastructure for cleft care training (Chahine et al, 2020; Volk et al, 2020; Kantar et al, 2021; Espinosa et al, 2021). The goal of these organizations is to establish a longitudinal capacity building that sustainably benefits the local host sites and patient populations (Yao et al, 2016; Sommer et al, 2020; Espinosa et al, 2021). Utilizing GT data coupled with WHO health indicators can help elucidate the specific needs of LMICs and regions within those countries.…”

Section: Discussionmentioning

confidence: 99%

Global Cleft Lip and Palate Outreach: A Google Trends Analysis

Weissman

Reddy

Shah

et al. 2021

The Cleft Palate Craniofacial Journal

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Understanding patient awareness of cleft lip and/or palate (CL/P) and evaluating demand for necessary procedures may serve to better target future efforts in global outreach. We utilized internet search query data from Google Trends for the terms: “cleft lip,” “cleft palate,” “cleft lip and palate,” “cleft surgery,” and “cleft repair” from January 2004 to January 2021. Relative search volumes (RSV) recorded for the top 5 highest displaying countries and top 3 available regions within those countries were compared against global outreach by Operation Smile and Smile Train, as measured by the number of patients treated. World Health Organization (WHO) indicators were used to validate the RSV values for each country and better understand the current infrastructure and need for cleft care in those countries. Globally, there was an increase in RSV for the terms “cleft lip,” “cleft palate,” “cleft repair,” and “cleft surgery” between 2004 and 2021. For “cleft lip,” the countries with the highest displaying RSVs included: Ghana (100%), Zimbabwe (97%), Nepal (78%), the Philippines (64%), and Kenya (52%). Countries with high RSVs and moderate to high WHO indicators included Ghana, Kenya, India, Nigeria, and Zimbabwe. Countries with high RSVs and poor WHO indicators included Nepal and Pakistan. Some countries had specific regions with high search demand that are not currently targeted for global outreach. Using Google Trends’ data may help find more feasible locations and targeted care for efforts in global outreach with better patient awareness and turnout where demand for CL/P is increasing.

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A Qualitative Analysis of Factors Impacting Comprehensive Cleft Lip and Palate Care in Ghana

Cited by 9 publications

References 23 publications

‘Sometimes I feel sad’: A qualitative study on children's perceptions with cleft palate speech and language therapy

‘Sometimes I feel sad’: A qualitative study on children's perceptions with cleft palate speech and language therapy

Factors Associated With Perception of Stigma Among Parents of Children With Cleft Lip and Palate: Cross-Sectional Study

Global Cleft Lip and Palate Outreach: A Google Trends Analysis

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