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

A Robust Kalman Algorithm to Facilitate Human-Computer Interaction for People with Cerebral Palsy, Using a New Interface Based on Inertial Sensors

This work aims to create an advanced human-computer interface called ENLAZA for people with cerebral palsy (CP). Although there are computer-access solutions for disabled people in general, there are few evidences from motor disabled community (e.g., CP) using these alternative interfaces. The proposed interface is based on inertial sensors in order to characterize involuntary motion in terms of time, frequency and range of motion. This characterization is used to design a filtering technique that reduces the effect of involuntary motion on person-computer interaction. This paper presents a robust Kalman filter (RKF) design to facilitate fine motor control based on the previous characterization. The filter increases mouse pointer directivity and the target acquisition time is reduced by a factor of ten. The interface is validated with CP users who were unable to control the computer using other interfaces. The interface ENLAZA and the RKF enabled them to use the computer

The Gothenburg H70 Birth cohort study 2014-16: design, methods and study population

To improve health care for older persons, we need to learn more about ageing, e.g. identify protective factors and early markers for diseases. The Gothenburg H70 Birth Cohort Studies (the H70 studies) are multidisciplinary epidemiological studies examining representative birth cohorts of older populations in Gothenburg, Sweden. So far, six birth cohorts of 70-year-olds have been examined over time, and examinations have been virtually identical between studies. This paper describes the study procedures for the baseline examination of the Birth cohort 1944, conducted in 2014-16. In this study, all men and women born 1944 on specific dates, and registered as residents in Gothenburg, were eligible for participation (n = 1839). A total of 1203 (response rate 72.2%; 559 men and 644 women; mean age 70.5 years) agreed to participate in the study. The study comprised sampling of blood and cerebrospinal fluid, psychiatric, cognitive, and physical health examinations, examinations of genetics and family history, use of medications, social factors, functional ability and disability, physical fitness and activity, body composition, lung function, audiological and ophthalmological examinations, diet, brain imaging, as well as a close informant interview, and qualitative studies. As in previous examinations, data collection serves as a basis for future longitudinal follow-up examinations. The research gained from the H70 studies has clinical relevance in relation to prevention, early diagnosis, clinical course, experience of illness, understanding pathogenesis and prognosis. Results will increase our understanding of ageing and inform service development, which may lead to enhanced quality of care for older persons

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

Digital presence vs. Personal integrity : A study about the users of the Meta network

Meta-nätverket (tidigare kallat Facebook) är ett av de nätverk som har gjort det till sitt levebröd att samla in användardata för att sedan kunna använda dessa för att fylla sina annonsplatser med annonser som är relevanta för varje specifik användare. Användarnas integritet via Meta-nätverket och liknande plattformar har ifrågasatts och företaget Apple har nu utvecklat en datainsamlingspop-up som heter App Tracking Transparency (ATT). ATT har gjort det möjligt för användarna att blockera applikationer från att samla in data från webbsidor och applikationer ägda av andra företag, vilket har lett till stora förluster för Meta som håller på med denna typ av datainsamling. Syftet med denna studie var därför att undersöka hur svenska användare ställer sig till sin integritet online och då mer specifikt via Meta-nätverkets applikationer. Detta genom att titta närmare på vilken data de är villiga att dela med sig av, deras agerande mot ATT och liknande verktyg, synen på Metas datainsamling samt vad som är viktigast – deras integritet online eller sin digitala närvaro. Denna studie har genomförts som en enkätundersökning och har publicerats i Meta-applikationen Facebook. Studien visade att användarna delar med sig av mer data än de är villiga till, klickar sig snabbt förbi datainsamlingspop-ups utan att göra aktiva val, ser negativt på Meta-nätverkets datainsamling och värderar sin digitala närvaro högre än sin integritet online. Slutsatsen blev därför att användarna har ett behov av stöd i form av tydlighet och information om hur och var ens användardata används samt bättre datainsamlingspop-ups designade efter användarnas beteendemönster.The Meta network (formerly known as Facebook) is one of the networks that have made it their livelihood to collect user data with the goal to analyze and utilize it for marketing purposes. As a result, the ads can now be relevant to each specific user. The user’s integrity through the Meta network and other similar platforms have been questioned and the company Apple have now developed a data collection pop up called App Tracking Transparency (ATT). ATT have made it possible for the user to block certain applications from gathering data from applications owned by other companies, which have led to great losses for Meta since they’re practicing this type of data collection. The purpose of this study was therefore to investigate how Swedish users view their privacy online, more specifically, via the Meta network's applications. This was made possible through looking closely at what data they are willing to share, their actions towards ATT and similar tools, the view of Meta's data collection and lastly a look at what is most important - their privacy online or their digital presence. The study has been executed through a survey that’ve been published in Metas application Facebook. The study showed that the users share more data that they’re comfortable with, quickly click past the data collection pop ups without making an active choice, views the Meta network's data collection negatively and values their digital presence higher than their online integrity. The conclusion of the study was therefore that the users have a need for support in the form of clarity and information on how and where their user data is used as well as better data collection pop-ups designed according to users' behavioral patterns.

Digital presence vs. Personal integrity : A study about the users of the Meta network

Meta-nätverket (tidigare kallat Facebook) är ett av de nätverk som har gjort det till sitt levebröd att samla in användardata för att sedan kunna använda dessa för att fylla sina annonsplatser med annonser som är relevanta för varje specifik användare. Användarnas integritet via Meta-nätverket och liknande plattformar har ifrågasatts och företaget Apple har nu utvecklat en datainsamlingspop-up som heter App Tracking Transparency (ATT). ATT har gjort det möjligt för användarna att blockera applikationer från att samla in data från webbsidor och applikationer ägda av andra företag, vilket har lett till stora förluster för Meta som håller på med denna typ av datainsamling. Syftet med denna studie var därför att undersöka hur svenska användare ställer sig till sin integritet online och då mer specifikt via Meta-nätverkets applikationer. Detta genom att titta närmare på vilken data de är villiga att dela med sig av, deras agerande mot ATT och liknande verktyg, synen på Metas datainsamling samt vad som är viktigast – deras integritet online eller sin digitala närvaro. Denna studie har genomförts som en enkätundersökning och har publicerats i Meta-applikationen Facebook. Studien visade att användarna delar med sig av mer data än de är villiga till, klickar sig snabbt förbi datainsamlingspop-ups utan att göra aktiva val, ser negativt på Meta-nätverkets datainsamling och värderar sin digitala närvaro högre än sin integritet online. Slutsatsen blev därför att användarna har ett behov av stöd i form av tydlighet och information om hur och var ens användardata används samt bättre datainsamlingspop-ups designade efter användarnas beteendemönster.The Meta network (formerly known as Facebook) is one of the networks that have made it their livelihood to collect user data with the goal to analyze and utilize it for marketing purposes. As a result, the ads can now be relevant to each specific user. The user’s integrity through the Meta network and other similar platforms have been questioned and the company Apple have now developed a data collection pop up called App Tracking Transparency (ATT). ATT have made it possible for the user to block certain applications from gathering data from applications owned by other companies, which have led to great losses for Meta since they’re practicing this type of data collection. The purpose of this study was therefore to investigate how Swedish users view their privacy online, more specifically, via the Meta network's applications. This was made possible through looking closely at what data they are willing to share, their actions towards ATT and similar tools, the view of Meta's data collection and lastly a look at what is most important - their privacy online or their digital presence. The study has been executed through a survey that’ve been published in Metas application Facebook. The study showed that the users share more data that they’re comfortable with, quickly click past the data collection pop ups without making an active choice, views the Meta network's data collection negatively and values their digital presence higher than their online integrity. The conclusion of the study was therefore that the users have a need for support in the form of clarity and information on how and where their user data is used as well as better data collection pop-ups designed according to users' behavioral patterns.

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