Scandcleft randomised trials of primary surgery for unilateral cleft lip and Palate: 9. Parental report of social and emotional experiences related to their 5-year-old child’s cleft diagnosis

© 2017 Acta Chirurgica Scandinavica Society. Background and aim: Parents of children with a cleft lip and palate may be emotionally affected by the child’s diagnosis. Their experiences and perceptions are important when evaluating the complexity of satisfactory treatment outcomes. The objective was to examine parents’ social and emotional experiences related to their child’s cleft diagnosis, and their perceptions of the child’s adjustment to living with a visible difference. Design: International multicentre study by 10 cleft teams in five countries: Denmark, Finland, Sweden, Norway, and the UK. Methods: A cohort of 448 children born with a non-syndromic UCLP were included. A total of 356 parents completed the Scandcleft Parent Questionnaire. Results: The majority of parents experienced practical and emotional support from family, friends, and health professionals. Nevertheless, parents had to cope with other people’s reactions to the cleft, experiences that were described as ranging from hurtful to neutral and/or positive. According to parents, 39% of the children had experienced cleft-related comments and/or teasing. More than half of the parents reported specific worries related to their child’s future. Conclusion: While the majority of the parents experienced positive support and coped well with the child’s diagnosis, some parents were at risk for psychological and emotional challenges that should be identified by the cleft team. To optimise outcomes and the child’s adjustment, these parents should be offered psychological support when necessary. Trial registration: ISRCTN29932826

Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 10. Parental perceptions of appearance and treatment outcomes in their 5-year-old child

© 2017 Acta Chirurgica Scandinavica Society. Background and aim: Few studies have explored children’s emotional and behavioural reactions to cleft surgery and treatment-related stress. The objective was to investigate parents’ evaluations of appearance and treatment outcomes in their 5-year-old child with unilateral cleft lip and palate (UCLP), and their perceptions of how their child was coping with treatment, comparing this information with recorded postsurgical complications. Design: Three parallel group randomised clinical trials were undertaken as an international multicentre study by 10 cleft teams in five countries: Denmark, Finland, Sweden, Norway, and the UK. Methods: Three different surgical procedures for primary palatal repair were tested against a common procedure in the total cohort of 448 children born with a non-syndromic UCLP. A total of 356 parents completed the Scandcleft Parent Questionnaire, and 346 parents completed the Cleft Evaluation Profile. Results: The results indicated that the majority of parents were satisfied with cleft-related features of their child’s appearance. Further, most children coped well with treatment according to their parents. Nevertheless, 17.5% of the children showed minor or short-term reactions after treatment experiences, and 2% had major or lasting difficulties. There were no significant relationships between parent perceptions of treatment-related problems and the occurrence of post-surgical medical complications. Conclusions: Most parents reported satisfaction with their child’s appearance. However, treatment-related problems were described in some children, urging cleft centres to be aware of potential negative emotional and behavioural reactions to treatment in some young children, with a view to preventing the development of more severe treatment-related anxiety. Trial registration: ISRCTN29932826

Attitude to Speech and Communication in Individuals Born with Cleft Lip and Palate

The overall aim of this thesis was to explore and describe how individuals who are born with a cleft lip and palate experience their communicative situation, how they perceive their speech and whether their views correlate with the results of speech assessments made by specialised speech-language pathologists (SLPs). Both quantitative and qualitative methods were used. Fifty-four 10-year-olds born with a cleft involving the palate completed a Swedish version of a Communicative Attitude Test (CAT-S) and the result was compared with their parents’ responses to questions about their child’s communicative situation and the results of speech assessments made by SLPs. The children’s mean CAT-S scores were also compared with the mean score of a group of children without a cleft. Thirty-five young adults born with a unilateral or bilateral cleft lip and palate were asked about their satisfaction with speech outcome after their treatment had been terminated. They indicated their satisfaction with their speech on visual analogue scales which were compared with speech assessments. Finally, 13 young adults who had been assessed as having a speech impairment on their last visit to the cleft team participated in semi-structured interviews about their experiences of growing up with a cleft and their impressions of their speech and communication. The interviews were conducted and analysed according to the guidelines of the qualitative method Grounded Theory. The 10-year-olds’ responses to the CAT-S were significantly correlated with the majority of the speech variables, but the associations could only explain part of the variance. Their communicative attitude was significantly more negative compared with reference data from 10-year-olds without a cleft, but there were large individual differences among children born with a cleft. The adults’ own satisfaction with speech was not statistically correlated with the results of the speech assessments. The analysis of the interviews resulted in two separate areas with separate core categories. The core category Making sense of the cleft described the processes of developing self-image in relation to the cleft and comprised the categories Shaping one’s attitude to the cleft and Dealing with being different. The core category Taking charge of communication described the way the speech impairment was dealt with and comprised the categories Forming an idea of one’s speech, Learning about one’s communication and Taking responsibility for communication. Many of the children and adults born with a cleft lip and palate who were assessed as having a speech impairment by SLPs were themselves satisfied with their speech and described well-functioning communication in most situations. Isolated speech assessments by SLPs are therefore not especially informative about the person’s communicative participation in society. For this reason, it is also important to assess the persons’ own attitude to their speech and communication in a structured way. Adding information about the individual’s own experience would expand the field of speech-language pathology from a description of speech impairment to include communicative participation, which has implications for both clinical practice and research concerning individuals born with a cleft lip and palate

Communicating with individuals receiving home mechanical ventilation : the experiences of key communication partners

Purpose: The aim of the study was to explore the communication experiences of key communications partners (CPs) of individuals receiving home mechanical ventilation (HMV), with particular emphasis on the possibilities, difficulties and limitations CPs experienced in communication, possible support given to facilitate communication and exploring what made a skilled communicator. Method: A qualitative research design using interviews was used. The participants included 19 key CPs of individuals receiving HMV. Results: The analysis resulted in five themes: Encountering communication limitations, Functional communication strategies, Being a communication facilitator, Role insecurity and Emotional reactions and coping. The findings revealed that CPs needed to develop partly new reference frames for communication. In particular, participants emphasised the need to understand and interpret subtle details in the communicative interaction. Conclusions: The findings are discussed in the light of previous research, in particular an earlier study exploring another perspective; the ventilator-supported individuals' experiences of communication. Issues relating to the educational needs of CPs of individuals receiving HMV are discussed. The results are intended to enhance understanding of the challenges that individuals receiving HMV and their CPs face with communication, which should be of relevance not only to speech therapists, but for all healthcare practitioners in the field of HMV

Reliability of Speech Variables and Speech-Related Quality Indicators in the Swedish Cleft Lip and Palate Registry

Objective: To assess the reliability of speech variables and speech-related quality indicators in the Swedish quality registry for cleft lip and palate (CLP). Design: Retrospective study. Setting: Primary care university hospitals. Participants: Fifty-two 5-year-old children with unilateral CLP and 41 with bilateral CLP. Main Outcome Measures: Registry data for “percent nonoral errors” and “perceived velopharyngeal competence” (VPC) were compared to reassessments by 4 independent judges based on audio recordings. Interjudge agreement for “percent consonants correct” (PCC) and the reliability of 3 quality indicators were also assessed. Agreement was calculated with single measures intraclass correlation coefficient (ICC) for articulation outcomes, quadratic weighted κ and ICC for VPC, and percentage agreement and κ for quality indicators. Results: When the agreement between registry data and the judges’ reassessments was assessed, the ICC was 0.79 for percent nonoral errors. For VPC, the κ coefficient was 0.66 to 0.75 and the ICC was 0.73. Interjudge agreement for PCC calculated with ICC was 0.85. For the quality indicator “proportion of children with ≥86% correct consonants,” all 4 judges were in agreement for 72% of the cases. For “proportion of children without nonoral speech errors” and “proportion of children with competent or marginally incompetent velopharyngeal function,” the agreement between registry data and the 4 judges was 89% and 85%, respectively. Conclusions: The results indicate that registry data on PCC, percent nonoral errors, VPC, and the quality indicators “proportion of children without nonoral speech errors” and “proportion of children with competent or marginally incompetent velopharyngeal function” are reliable

Communication experience of individuals treated with home mechanical ventilation.

Background: Mechanical ventilatory support seriously affects speaking and communication, and earlier studies show that many ventilator-supported patients experience difficulties and frustration with their speech and voice production. Since there is a growing number of individuals who require mechanical ventilatory support and there is a paucity of studies that examine ventilator-supported communication, this research area needs to be developed to ensure adequate health services for this population. The present study focused on ventilator-supported communication from the point of view of individuals receiving home mechanical ventilation (HMV). Aims: The specific aim was to examine the communication experience of individuals receiving HMV. Methods & Procedures: A qualitative approach was adopted for this study, and data were collected by means of semi-structured interviews. Qualitative content analysis was used to structure, condense and interpret the data. The participants were recruited from the National Respiratory Centre (NRC) in Sweden, and included 19 individuals receiving HMV. Outcomes & Results: The main theme A long and lonely struggle to find a voice and six subthemes detailing different facets of it emerged from data analysis: Managing changed speech conditions, Prioritising voice, A third party supporting communication, Using communication to get things done, Depending on technology, and Facing ignorance. Important aspects influencing the ventilator-supported individuals' communicative performance (speech, support from others and technological solutions) are discussed. Conclusions & Implications: The study revealed that healthcare practitioners involved in the care of individuals receiving HMV need to improve their understanding and knowledge of issues related to ventilator-supported communication. Individuals receiving HMV encounter a needlessly long and lonely struggle to achieve effective communication. They face numerous challenges regarding their communication, and they need to be heard in both literal and figurative senses. To overcome these challenges they need support from competent healthcare practitioners and personal assistants, and continuous follow-up by speech and language therapists tailoring communicative solutions to fit individual needs

Surgical, speech, and hearing outcomes at five years of age in internationally adopted children and Swedish-born children with cleft lip and/or palate

Internationally adopted children (IAC) with a cleft lip and/or palate (CL/P) tend to arrive with un-operated palates at an age at which their Swedish-born peers have completed their primary palate surgery. Our aim of the present study was to analyze surgical, speech and hearing outcomes of IAC at age 5 and compare with those of a matched group of Swedish-born children. Fifty children with CL/P born in 1994-2005 participated in the study. Twenty-five IAC were matched according to age, sex and cleft type with 25 Swedish-born children. Audio recordings were perceptually analyzed by two experienced, blinded speech-language pathologists. Hearing and speech statuses were evaluated on the same day for all children. Surgical timing and complications as in fistulas and requirement for secondary velopharyngeal (VP) surgery, speech evaluation results, and present hearing status were analyzed for all children of age 5 years. Results showed that primary palatal surgery was delayed by a mean of 21 months in IAC. IAC had a higher prevalence of velopharyngeal impairment that was statistically significant, a higher fistula rate, and experienced more secondary surgery than Swedish-born peers. Hearing loss due to middle ear disease was slightly more common among IAC, whereas the rate of treatment with tympanostomy tubes was similar between the two groups. In conclusion, IAC with CL/P represent a challenge for CL/P teams because of the heterogeneous nature of the patient group and difficulties associated with delayed treatment, and the results show the importance of close follow-up over time

Reliability of data on percent consonants correct and its associated quality indicator in the Swedish cleft lip and palate registry

Background Data in national health care quality registries must be valid and reliable in order to enable open comparisons of results. Aim To assess the reliability of data on percent consonants correct (PCC) and its associated quality indicator >= 86% correct consonants in the Swedish quality registry for patients born with cleft lip and palate (CLP) registry. Methods Six independent speech-language pathologists re-assessed the audio recordings of 96 five-year-olds with PCC data in the CLP registry. Target consonants of a single-word picture-naming test were phonetically transcribed, and PCC was calculated. The reliability of PCC data was assessed with the intraclass correlation coefficient (ICC). The reliability of the quality indicator >= 86% correct consonants was assessed with point-by-point percentage agreement and Cohens kappa. Results Intra- and inter-judge agreement for PCC was excellent with ICCs above 0.9, and so was the agreement of data from the CLP registry and the six judges re-assessments. The percentage agreement between all judges and the CLP registry for the quality indicator >= 86% correct consonants was poor (67%). However, in 88% of the cases, results from four judges and the CLP registry agreed, corresponding to good agreement. The mean of all kappa values for six judges and the CLP registry corresponded to good agreement (0.72). Conclusions The results indicate the PCC data in the CLP registry and the quality indicator >= 86% correct consonants to be reliable. When differences in outcome between treatment centres are detected, the raw data collected should always be re-examined before drawing definitive conclusions

Speech in 5-year-olds born with unilateral cleft lip and palate : a Prospective Swedish Intercenter Study

Studies on the impact of cleft palate surgery on speech with stringent methodology are called for, since we still do not know the best timing or the best method for surgery. The purpose was to report on speech outcome for all Swedish-speaking 5-year-olds born with a non-syndromic unilateral cleft lip and palate (UCLP), in 2008-2010, treated at Sweden's six cleft palate centres, and to compare speech outcomes between centres. Speech was assessed in 57 children with percent consonants correct adjusted for age (PCC-A), based on phonetic transcriptions from audio recordings by five independent judges. Also, hypernasality and perceived velopharyngeal function were assessed. The median PCC-A for all children was 93.9, and medians in the different groups varied from 89.9 to 96.8. In the total group, 9 children (16%) had more than mild hypernasality. Twenty-two children (38.5%) were perceived as having competent/sufficient velopharyngeal function, 25 (44%) as having marginally incompetent/insufficient velopharyngeal function, and 10 children (17.5%) as having incompetent/insufficient velopharyngeal function. Ten children were treated with secondary speech improving surgery and/or fistula surgery. No significant differences among the six groups, with eight to ten children in each group, were found. The results were similar to those in other studies on speech of children with UCLP, but poorer than results in normative data of Swedish-speaking 5-year-olds without UCLP. Indications of differences in frequency of surgical treatment and speech treatment between centres were observed