Thesis
Quality of life in adolescents with repaired cleft lip and palate living in Sri Lanka
- Creator
- Rights statement
- Awarding institution
- University of Strathclyde
- Date of award
- 2024
- Thesis identifier
- T16980
- Person Identifier (Local)
- 201865135
- Qualification Level
- Qualification Name
- Department, School or Faculty
- Abstract
- Introduction Cleft lip ± palate (CLP) is the most common congenital abnormality in the craniofacial region. This condition impacts an affected individual’s speech, hearing, appearance, and psychological wellbeing which can lead to long-lasting adverse outcomes for health and social integration. Children born with CLP typically need multidisciplinary care from birth to adulthood. Hence, the health and social integration difficulties, along with a lengthy treatment process, can have negative impacts on an individual’s quality of life (QoL). Measuring QoL in people born with CLP is necessary in order to understand their feelings of satisfaction in areas that they consider important. Enhancement of QoL is now accepted as an important objective of health care and rehabilitation. In Sri Lanka, where multidisciplinary services are provided for children with CLP from birth, psychological services are not widespread, and often QoL assessments are not undertaken. Speech and language therapists (SLTs), as one of the key professionals responsible for the care of people with CLP in Sri Lanka, play an important role in providing services to improve speech and enhance QoL. However, SLTs find providing these services challenging due to the limited resources available. Lack of standardised assessments validated with children and young people with CLP is one of the biggest challenges SLTs experience when treating children and young people born with CLP. This study aimed to address this gap by translating and validating assessments of speech intelligibility and quality of life into Sinhala, the main language spoken in Sri Lanka. Method A two-phase study was performed. The first phase aimed to translate and culturally adapt the English language version of the Intelligibility in Context Scale (ICS) and the Child Oral Health Impact Profile (COHIP) into Sinhala. In the second phase, this study aimed to 1. validate the new Sinhala ICS (ICS-SIN) and COHIP (COHIP-S) with both typically developing (TD) adolescents and adolescents with repaired CLP and 2. Compare QoL and speech intelligibility within and between groups. The study employed mixed methodologies prioritising quantitative analysis. The first phase was conducted using “forward-backward-forward” translation method following cross cultural assessment adaptation guidelines. Qualified bilingual SLTs involved in the translation process and appropriate cultural adaptations were applied into the translated questionnaires after a reconciliation meeting. Thereafter, these questionnaires were piloted, and further changes were made where necessary. Finally, the ICS-SIN and COHIP-S was produced to develop the next stage of this study. After transcultural adaptation, the COHIP-S was validated with 317 TD adolescents aged 12-15 years old and 38 adolescents aged 12-15 years with repaired CLP. The ICS-SIN was validated with 50 parents/carers of TD adolescents and 38 parents/carers of adolescents with repaired CLP. The psychometric properties of the COHIP-S and ICS-SIN were statistically analysed to determine the reliability, construct, convergent and discriminant validity. The adolescent participants also completed the Paediatric Quality of Life – Sinhala (PedsQL-Sinhala) generic QoL questionnaire together with the COHIP-S and the ICS-SIN. QoL responses to PedsQL-Sinhala and COHIP-S were compared between TD and CLP adolescents. Moreover, a descriptive analysis and a correlational analysis were conducted to identify the most sensitive QoL measure for adolescents with CLP amongst generic and condition-specific questionnaires. Results The English COHIP and ICS measures were translated, culturally adapted, and piloted successfully. The COHIP-S was found to have good reliability (defined by Cronbach α), face validity, construct, and discriminant validity for both TD and CLP adolescents’ groups. The PedsQL-Sinhala and COHIP-S findings highlighted that, adolescents with CLP had a lower QoL when compared to the same age TD adolescents. The descriptive analysis showed that COHIP-S was more sensitive in identifying QoL issues in adolescents with CLP than the generic PedsQL-Sinhala. The ICS-SIN was found to have good content, construct and discriminant validity and reliability for both TD adolescents and adolescents with CLP. Speech intelligibility ratings reported by the parents of adolescents with CLP were significantly lower than the TD parents’ ratings. However, the parents’ speech intelligibility ratings were not correlated with the QoL findings of the adolescents with CLP in this thesis. Discussion The findings of this study have the potential to enhance SLT practice in Sri Lanka. The validated ICS-SIN and COHIP-S are potential clinical resources which can be easily implemented in SLT clinics. This study suggests that QoL in adolescents with CLP is affected. SLTs, as a key member of the multidisciplinary team can integrate QoL assessment into the standard assessment process, identifying affected individuals and referring them for support where necessary. Moreover, the results emphasized the importance of using a condition specific QoL measures for people with CLP rather than a generic QoL measure. Results also suggested that CLP adolescent’s speech intelligibility was lower compared to TD peers, despite the participants being well into adolescence. Future research is needed to explore the relationship between speech intelligibility and quality of life in adolescents with CLP including analysis of speech samples and patients’ perspectives. Moreover, further research should seek to clarify the validity and reliability of the ICS-SIN for younger age groups children with CLP and other types of speech disorders.
- Advisor / supervisor
- Cleland, Joanne
- Cohen, Wendy
- Resource Type
- Note
- Previously held under moratorium from 11 June 2024 until 11 June 2026.
- DOI
- Date Created
- 2023
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