Search results for: vignette
Commenced in January 2007
Frequency: Monthly
Edition: International
Paper Count: 15

Search results for: vignette

15 Implications of Creating a 3D Vignette as a Reflective Practice for Continuous Professional Development of Foreign Language Teachers

Authors: Samiah H. Ghounaim

Abstract:

The topic of this paper is significant because of the increasing need for intercultural training for foreign language teachers due to the continuous challenges they face in their diverse classrooms. First, the structure of the intercultural training program designed will be briefly described, and the structure of a 3D vignette and its intended purposes will be elaborated on. This was the first stage where the program was designed and implemented on the period of three months with a group of local and expatriate foreign language teachers/practitioners at a university in the Middle East. After that, a set of primary data collected during the first stage of this research on the design and co-construction process of a 3D vignette will be reviewed and analysed in depth. Each practitioner designed a personal incident into a 3D vignette where each dimension of the vignette viewed the same incident from a totally different perspective. Finally, the results and the implications of having participant construct their personal incidents into a 3D vignette as a reflective practice will be discussed in detail as well as possible extensions for the research. This process proved itself to be an effective reflective practice where the participants were stimulated to view their incidents in a different light. Co-constructing one’s own critical incidents –be it a positive experience or not– into a structured 3D vignette encouraged participants to decentralise themselves from the incidents and, thus, creating a personal reflective space where they had the opportunity to see different potential outcomes for each incident, as well as prepare for the reflective discussion of their vignette with their peers. This provides implications for future developments in reflective writing practices and possibilities for educators’ continuous professional development (CPD).

Keywords: 3D vignettes, intercultural competence training, reflective practice, teacher training

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14 Solar Energy Technology Adoption; A Vignette Study for the Up-Scale Residential Sector in Egypt

Authors: Mazen Zaki, Sherwat E. Ibrahim

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Renewable energy has become a very important and critical topic all around the world due to the limited resources that led to shifting to the trend of renewable energy and its integration with the conventional ones. This paper investigates the adoption of the solar energy technology for up-scale residential sector in Cairo, Egypt. The technology acceptance model uses several stakeholder points’ of views to develop vignettes to be used in examining the intention and attitude of the householders to adopt the solar energy technology.

Keywords: solar energy, technology acceptance model, TAM, stakeholder analysis, vignette, residential sector

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13 Competence of the Health Workers in Diagnosing and Managing Complicated Pregnancies: A Clinical Vignette Based Assessment in District and Sub-District Hospitals in Bangladesh

Authors: Abdullah Nurus Salam Khan, Farhana Karim, Mohiuddin Ahsanul Kabir Chowdhury, S. Masum Billah, Nabila Zaka, Alexander Manu, Shams El Arifeen

Abstract:

Globally, pre-eclampsia (PE) and ante-partum haemorrhage (APH) are two major causes of maternal mortality. Prompt identification and management of these conditions depend on competency of the birth attendants. Since these conditions are infrequent to be observed, clinical vignette based assessment could identify the extent of health worker’s competence in managing emergency obstetric care (EmOC). During June-August 2016, competence of 39 medical officers (MO) and 95 nurses working in obstetric ward of 15 government health facilities (3 district hospital, 12 sub-district hospital) was measured using clinical vignettes on PE and APH. The vignettes resulted in three outcome measures: total vignette scores, scores for diagnosis component, and scores for management component. T-test was conducted to compare mean vignette scores and linear regression was conducted to measure the strength and association of vignette scores with different cadres of health workers, facility’s readiness for EmOC and average annual utilization of normal deliveries after adjusting for type of health facility, health workers’ work experience, training status on managing maternal complication. For each of the seven component of EmOC items (administration of injectable antibiotics, oxytocic and anticonvulsant; manual removal of retained placenta, retained products of conception; blood transfusion and caesarean delivery), if any was practised in the facility within last 6 months, a point was added and cumulative EmOC readiness score (range: 0-7) was generated for each facility. The yearly utilization of delivery cases were identified by taking the average of all normal deliveries conducted during three years (2013-2015) preceding the survey. About 31% of MO and all nurses were female. Mean ( ± sd) age of the nurses were higher than the MO (40.0 ± 6.9 vs. 32.2 ± 6.1 years) and also longer mean( ± sd) working experience (8.9 ± 7.9 vs. 1.9 ± 3.9 years). About 80% health workers received any training on managing maternal complication, however, only 7% received any refresher’s training within last 12 months. The overall vignette score was 8.8 (range: 0-19), which was significantly higher among MO than nurses (10.7 vs. 8.1, p < 0.001) and the score was not associated with health facility types, training status and years of experience of the providers. Vignette score for management component (range: 0-9) increased with higher annual average number of deliveries in their respective working facility (adjusted β-coefficient 0.16, CI 0.03-0.28, p=0.01) and increased with each unit increase in EmOC readiness score (adjusted β-coefficient 0.44, CI 0.04-0.8, p=0.03). The diagnosis component of vignette score was not associated with any of the factors except it was higher among the MO than the nurses (adjusted β-coefficient 1.2, CI 0.13-2.18, p=0.03). Lack of competence in diagnosing and managing obstetric complication by the nurses than the MO is of concern especially when majority of normal deliveries are conducted by the nurses. Better EmOC preparedness of the facility and higher utilization of normal deliveries resulted in higher vignette score for the management component; implying the impact of experiential learning through higher case management. Focus should be given on improving the facility readiness for EmOC and providing the health workers periodic refresher’s training to make them more competent in managing obstetric cases.

Keywords: Bangladesh, emergency obstetric care, clinical vignette, competence of health workers

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12 Employers’ Preferences when Employing Solo Self-employed: a Vignette Study in the Netherlands

Authors: Lian Kösters, Wendy Smits, Raymond Montizaan

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The number of solo self-employed in the Netherlands has been increasing for years. The relative increase is among the largest in the EU. To explain this increase, most studies have focused on the supply side, workers who offer themselves as solo self-employed. The number of studies that focus on the demand side, the employer who hires the solo self-employed, is still scarce. Studies into employer behaviour conducted until now show that employers mainly choose self-employed workers when they have a temporary need for specialist knowledge, but also during projects or production peaks. These studies do not provide insight into the employers’ considerations for different contract types. In this study, interviews with employers were conducted, and available literature was consulted to provide an overview of the several factors employers use to compare different contract types. That input was used to set up a vignette study. This was carried out at the end of 2021 among almost 1000 business owners, HR managers, and business leaders of Dutch companies. Each respondent was given two sets of five fictitious candidates for two possible positions in their organization. They were asked to rank these candidates. The positions varied with regard to the type of tasks (core tasks or support tasks) and the time it took to train new people for the position. The respondents were asked additional questions about the positions, such as the required level of education, the duration, and the degree of predictability of tasks. The fictitious candidates varied, among other things, in the type of contract on which they would come to work for the organization. The results were analyzed using a rank-ordered logit analysis. This vignette setup makes it possible to see which factors are most important for employers when choosing to hire a solo self-employed person compared to other contracts. The results show that there are no indications that employers would want to hire solo self-employed workers en masse. They prefer regular employee contracts. The probability of being chosen with a solo self-employed contract over someone who comes to work as a temporary employee is 32 percent. This probability is even lower than for on-call and temporary agency workers. For a permanent contract, this probability is 46 percent. The results provide indications that employers consider knowledge and skills more important than the solo self-employed contract and that this can compensate. A solo self-employed candidate with 10 years of work experience has a 63 percent probability of being found attractive by an employer compared to a temporary employee without work experience. This suggests that employers are willing to give someone a less attractive contract for the employer if the worker so wishes. The results also show that the probability that a solo self-employed person is preferred over a candidate with a temporary employee contract is somewhat higher in business economics, administrative and technical professions. No significant results were found for factors where it was expected that solo self-employed workers are preferred more often, such as for unpredictable or temporary work.

Keywords: employer behaviour, rank-ordered logit analysis, solo self-employment, temporary contract, vignette study

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11 To Allow or to Forbid: Investigating How Europeans Reason about Endorsing Rights to Minorities: A Vignette Methodology Based Cross-Cultural Study

Authors: Silvia Miele, Patrice Rusconi, Harriet Tenenbaum

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An increasingly multi-ethnic Europe has been pushing citizens’ boundaries on who should be entitled and to what extent to practise their own diversity. Indeed, according to a Standard Eurobarometer survey conducted in 2017, immigration is seen by Europeans as the most serious issue facing the EU, and a third of respondents reported they do not feel comfortable interacting with migrants from outside the EU. Many of these come from Muslim countries, accounting for 4.9% of Europe population in 2016. However, the figure is projected to rise up to 14% by 2050. Additionally, political debates have increasingly focused on Muslim immigrants, who are frequently portrayed as difficult to integrate, while nationalist parties across Europe have fostered the idea of insuperable cultural differences, creating an atmosphere of hostility. Using a 3 X 3 X 2 between-subjects design, it was investigated how people reason about endorsing religious and non-religious rights to minorities. An online survey has been administered to university students of three different countries (Italy, Spain and the UK) via Qualtrics, presenting hypothetical scenarios through a vignette methodology. Each respondent has been randomly allocated to one of the three following conditions: Christian, Muslim or non-religious (vegan) target. Each condition entailed three questions about children self-determination rights to exercise some control over their own lives and 3 questions about children nurturance rights of care and protection. Moreover, participants have been required to further elaborate on their answers via free-text entries and have been asked about their contact and quality of contact with the three targets, and to self-report religious, national and ethnic identification. Answers have been recorded on a Likert scale of 1-5, 1 being "not at all", 5 being "very much". A two-way ANCOVA will be used to analyse answers to closed-ended questions, while free-text answers will be coded and data will be dichotomised based on Social Cognitive Domain Theory for four categories: moral, social conventional and psychological reasons, and analysed via ANCOVAs. This study’s findings aim to contribute to the implementation of educational interventions and speak to the introduction of governmental policies on human rights.

Keywords: children's rights, Europe, migration, minority

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10 The Truth about Good and Evil: A Mixed-Methods Approach to Color Theory

Authors: Raniya Alsharif

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The color theory of good and evil is the association of colors to the omnipresent concept of good and evil, where human behavior and perception can be highly influenced by seeing black and white, making these connotations almost dangerously distinctive where they can be very hard to distinguish. This theory is a human construct that dates back to ancient Egypt and has been used since then in almost all forms of communication and expression, such as art, fashion, literature, and religious manuscripts, helping the implantation of preconceived ideas that influence behavior and society. This is a mixed-methods research that uses both surveys to collect quantitative data related to the theory and a vignette to collect qualitative data by using a scenario where participants aged between 18-25 will style two characters of good and bad characteristics with color contrasting clothes, both yielding results about the nature of the preconceived perceptions associated with ‘black and white’ and ‘good and evil’, illustrating the important role of media and communications in human behavior and subconscious, and also uncover how far this theory goes in the age of social media enlightenment.

Keywords: color perception, interpretivism, thematic analysis, vignettes

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9 Mental Health Literacy in Ghana: Consequences of Religiosity, Education, and Stigmatization

Authors: Peter Adu

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Although research on the concept of Mental Health Literacy (MHL) is growing internationally, to the authors’ best of knowledge, the beliefs and knowledge of Ghanaians on specific mental disorders have not yet been explored. This vignette study was conducted to explore the relationships between religiosity, education, stigmatization, and MHL among Ghanaians using a sample of laypeople (N = 409). The adapted questionnaire presented two vignettes (depression and schizophrenia) about a hypothetical person. The results revealed that more participants were able to recognize depression (47.4%) than schizophrenia (15.9%). Religiosity was not significantly associated with recognition of mental disorders (MHL) but was positively related with both social and personal stigma for depression and negatively associated with personal and perceived stigma for schizophrenia. Moreover, education was found to relate positively with MHL and negatively with perceived stigma. Finally, perceived stigma was positively associated with MHL, whereas personal stigma for schizophrenia related negatively to MHL. In conclusion, education but not religiosity predicted identification accuracy, but both predictors were associated with various forms of stigma. Findings from this study have implications for MHL and anti-stigma campaigns in Ghana and other developing countries in the region.

Keywords: depression, education, mental health literacy, religiosity, schizophrenia

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8 Power, Values, Rules and Leader Decision Making: A Discourse Perspective

Authors: Cathryn Robinson, Bernard McKenna, David Rooney

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This paper argues that the application of values-based leadership increasingly challenges leaders in rules-based organisations, particularly in bureaucratic organisations such as the military, public service, police, and emergency services. Leaders are grappling to reconcile how to enact values-based leadership and decision-making when they are bound by rules, policies, and procedures. This interpretive study used a multi-faceted vignette (critical incident) as the basis of an interview with air force officers at three levels: executive, senior, and junior. In this way, practice is forced to intersect with discourse. The findings revealed a shared set of discourse themes (legal; rules; safety and risk; operational practice/theatre discourses), but also clear dialectical tensions. These tensions were evident in executive officers and senior leaders emphasizing rules and information themes, whereas junior officers emphasized decision making, collateral, and situation. These findings reveal discourse and practice incommensurability that could have grave implications in the conduct of war.

Keywords: critical incident, discourse analysis, rules-based, values-based

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7 Beyond Recognition: Beliefs, Attitudes, and Help-Seeking for Depression and Schizophrenia in Ghana

Authors: Peter Adu

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Background: There is a paucity of mental health research in Ghana. Little is known about the beliefs and attitudes regarding specific mental disorders in Ghana. Method: A vignette study was conducted to examine the relationship between causal attributions, help-seeking, and stigma towards depression and schizophrenia using lay Ghanaians (N = 410). This adapted questionnaire presented two unlabelled vignettes about a hypothetical person with the above disorders for participants to provide their impressions. Next, participants answered questions on beliefs and attitudes regarding this person. Results: The results showed that causal beliefs about mental disorders were related to treatment options and stigma: spiritual causal attributions associated positively with spiritual help-seeking and perceived stigma for the mental disorders, whilst biological and psychosocial causal attribution of the mental disorders was positively related with professional help-seeking. Finally, contrary to previous literature, belonging to a particular religious group did not negatively associate with professional help-seeking for mental disorders. Conclusion: In conclusion, results suggest that Ghanaians may benefit from exposure to corrective information about depression and schizophrenia. Our findings have implications for mental health literacy and anti-stigma campaigns in Ghana and other developing countries in the region.

Keywords: stigma, mental health literacy, depression, schizophrenia, spirituality, religion

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6 Muslim Social Workers and Imams’ Recommendations in Marital and Child Custody Cases of Persons with Intellectual or Mental Disability

Authors: Badran Leena, Rimmerman Arie

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Arab society in Israel is undergoing modernization and secularization. However, its approach to disability and mental illness is still dominated by religious and traditional stereotypes, as well as folk remedies and community practices. The present study examines differences in Muslim social workers' and Imams' recommendations in marriage/divorce and child custody cases of persons with intellectual disabilities (ID) or mental illness. The study has two goals: (1) To examine differences in recommendations between Imams and Muslim social workers; (2) To explore variables related to their differential recommendations as observed in their responses to vignettes—a quantitative study using vignettes resembling existing Muslim religious (Sharia) court cases. Muslim social workers (138) and Imams (48) completed a background questionnaire, a religiosity questionnaire, and a questionnaire that included 25 vignettes constructed by the researcher based on court rulings adapted for the study. Muslim social workers tended to consider the religious recommendation when the family of a person with ID or mental illness was portrayed in the vignette as religious. The same applied to Imams, albeit to a greater extent. The findings call for raising awareness among social workers and academics regarding the importance of religion and tradition in formulating professional recommendations.

Keywords: child custody, intellectual and developmental disability, marriage/divorce, mental illness, sharia court, social workers

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5 Quantifying Stakeholders’ Values of Technical and Vocational Education and Training Provision in Nigeria

Authors: Lidimma Benjamin, Nimmyel Gwakzing, Wuyep Nanyi

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Technical and Vocational Education and Training (TVET) has many stakeholders, each with their own values and interests. This study will focus on the diversity of the values and interests within and across groups of stakeholders by quantifying the value that stakeholders attached to several quality attributes of TVET, and also find out to what extent TVET stakeholders differ in their values. The quality of TVET therefore, depends on how well it aligns with the values and interests of these stakeholders. The five stakeholders are parents, students, teachers, policy makers, and work place training supervisors. The 9 attributes are employer appreciation of students, graduation rate, obtained computer skills of students, mentoring hours in workplace learning/Students Industrial Work Experience Scheme (SIWES), challenge, structure, students’ appreciation of teachers, schooling hours, and attention to civic education. 346 respondents (comprising Parents, Students, Teachers, Policy Makers, and Workplace Training Supervisors) were repeatedly asked to rank a set of 4 programs, each with a specific value on the nine quality indicators. Conjoint analysis was used to obtain the values that the stakeholders assigned to the 9 attributes when evaluating the quality of TVET programs. Rank-ordered logistic regression was the statistical/tool used for ranking the respondents values assign to the attributes. The similarities and diversity in values and interests of the different stakeholders will be of use by both Nigerian government and TVET colleges, to improve the overall quality of education and the match between vocational programs and their stakeholders simultaneous evaluation and combination of information in product attributes. Such approach models the decision environment by confronting a respondent with choices that are close to real-life choices. Therefore, it is more realistically than traditional survey methods.

Keywords: TVET, vignette study, conjoint analysis, quality perception, educational stakeholders

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4 Stigmatization of Individuals Who Receive Mental Health Treatment and the Role of Social Media: A Cross-Generational Cohort Design and Extension

Authors: Denise Ben-Porath, Tracy Masterson

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In the past, individuals who struggled with and sought treatment for mental health difficulties were stigmatized. However, the current generation holds more open attitudes around mental health issues. Indeed, public figures such as Demi Lovato, Naomi Osaka, and Simone Biles have taken to social media to break the silence around mental health, discussing their own struggles and the benefits of treatment. Thus, there is considerable reason to believe that this generation would hold fewer stigmatizing attitudes toward mental health difficulties and treatment compared to previous ones. In this study, we explored possible changes in stigma on mental health diagnosis and treatment seeking behavior between two generations: Gen Z, the current generation, and Gen X, those born between 1965-1980. It was hypothesized that Gen Z would hold less stigmatizing views on mental illness than Gen X. To examine possible changes in stigma attitudes between these two generations, we conducted a cross-generational cohort design by using the same methodology employed 20 years ago from the Ben-Porath (2002) study. Thus, participants were randomly assigned to read one of the following four case vignettes employed in the Ben-Porath (2002) study: (a) “Tom” who has received psychotherapy due to depression (b) “Tom” who has been depressed but received no psychological help, (c) “Tom” who has received medical treatment due to a back pain, or (d) “Tom” who had a back pain but did not receive medical attention. After reading the vignette, participants rated “Tom” on various personality dimensions using the IFQ Questionnaire and answered questions about their frequency of social media use and willingness to seek mental health treatment on a scale from 1-10. Identical to the results 20 years prior, a significant main effect was found for diagnosis with “Tom” being viewed in more negative terms when he was described as having depression vs. a medical condition (back pain) [F (1, 376) = 126.53, p < .001]. However, in the study conducted 20 years earlier, a significant interaction was found between diagnosis and help-seeking behavior [F (1, 376) = 8.28, p < .005]. Specifically, “Tom” was viewed in the most negative terms when described as depressed and seeking treatment. Alternatively, the current study failed to find a significant interaction between depression and help seeking behavior. These findings suggest that while individuals who hold a mental health diagnosis may still be stigmatized as they were 20 years prior, seeking treatment for mental health issues may be less so. Findings are discussed in the context of social media use and its impact on destigmatization.

Keywords: stigma, mental illness, help-seeking, social media

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3 The Beauty and the Cruel: The Price of Ethics

Authors: Camila Lee Park, Mauro Fracarolli Nunes

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Understood as the preference for products and services that do not involve moral dilemmas, ethical consumption has been increasingly discussed by scholars, practitioners, and consumers. Among its diverse trends, the defense of animal rights and welfare seems to have gained particular momentum in past decades. Not surprisingly, companies, governments, ideologues, and virtually any institution or group interested in (re)shaping society invest in the building of narratives oriented to influence consumption behavior. The animal rights movement, for example, is devoted to the elimination of the use of animals in science, as well as of commercial animal agriculture and hunting activities. Although advances in ethical consumption may be observed in practice, it still seems more popular as rhetoric. Diverse scholars have addressed the disparities between self-professed ethical consumers and their actual purchase patterns, with differences being attributed to factors such as price sensitivity, lack of information, quality, cynicism, and limited availability. The gap is also linked to the 'consumer sovereignty myth', according to which consumers are only able to choose from a pre-determined range of choices made before products reach them. On the other hand, academics also debate ethical consumption behavior as more likely to occur when it assumes compliance with social norms. As sustainability becomes a permanent issue, customers may tend to adhere to ethical consumption, either because of an individual value or due to a social one. Regardless of these efforts, the actual value attributed to ethical businesses remains unclear. Likewise, the power of stakeholders’ initiatives to influence corporate strategies is dubious. In search to offer new perspectives on these matters, the present study concentrates on the following research questions: Do customers value products/companies that respect animal rights? If so, does such enhanced value convert into actions from the part of the companies? Broadly, we aim to understand if customers’ perception holds performative traits (i.e., are capable of either trigger or contribute to changes in organizational behaviour around the respect for animal rights). In addressing these issues, two preliminary behavioral vignette-based experiments were conducted, with the perspectives of 307 participants being assessed. Building on a case of the cosmetics industry, social, emotional, and functional values were hypothesized as directly impacting positive word-of-mouth, which, in turn, would carry direct effects on purchase intention. A first structural equation model was analyzed with the combined samples of studies I and II. Results suggest that emotional value strongly impacts both positive word-of-mouth and purchase intention. Data confirms initial expectations on customers valuing products and companies that comply with ethical postures concerning animals, especially if social-oriented practices are also present.

Keywords: animal rights, business ethics, emotional value, ethical consumption

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2 Using Q Methodology to Capture Attitudes about Academic Resilience in an Online Postgraduate Psychology Course

Authors: Eleanor F. Willard

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The attrition rate on distance learning courses can be high. This research examines how online students often react when faced with poor results. Using q methodology, it was found that the emotional response level and the type of social support sought by students were key influences on their attitude to failure. As educational and psychological researchers, we are adept at measuring learning and achievement, but examining attitudes towards barriers to learning are not so well researched. The distance learning student has differing needs from onsite learners and, as the attrition rate is notoriously high in the online student population, examining learners’ attitude towards adversity and barriers is important. Self-report measures such as questionnaires are useful in terms of ascertaining levels of constructs such as resilience and academic confidence. Interviewing, too, can gain in depth detail of the opinions of such a population, but only in individuals. The aim of this research was to ascertain what the feelings and attitudes of online students were when faced with a setback. This was achieved using q methodology due to its use of both quantitative and qualitative methodology and its suitability for exploratory research. The emphasis with this methodology is the attitudes, not the individuals. The work was focused upon a population of distance learning students who attended a school on site for one week as part of their studies. They were engaged in a psychology masters conversion course and, as such, were graduate students. The Q sort had 30 items taken from the Academic Resilience Scale (ARS-30). The scale items represent three constructs; perseverance, reflecting (including adaptive help-seeking) and negative affect. These are widely acknowledged as being relevant concepts underpinning psychological resilience. The q sort was conducted with 19 students in total. This is done by participants arranging statement cards regarding how similar to themselves they believe each statement to be. This was done after reading a vignette describing an experience of academic failure. Commonalities and differences between the sorts from all participants are then analyzed in terms of correlations and response patterns. Following data collection, the participants' responses were initially analyzed and the key perspectives (factors) to emerge were labelled ‘persevering individuals’ and ‘emotional networkers’. The differences between the two perspectives centre around the level of emotion felt when faced with barriers and the extent that students enlist the help of others inside and outside of the university. The dominant factor to emerge from the sorts of ‘persevering individuals’ demonstrated that many distance learners are tenacious. However, for other students, the level of emotional and social support is pivotal in helping them complete their studies when facing adversity. This was demonstrated by the ‘emotional networkers’ perspective. This research forms a starting point for further work on engaging and retaining online students at university and can potentially provide insight into how universities can lower attrition rates on distance learning courses.

Keywords: academic resilience, distance learning, online learning, q methodology

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1 Giving Children with Osteogenesis Imperfecta a Voice: Overview of a Participatory Approach for the Development of an Interactive Communication Tool

Authors: M. Siedlikowski, F. Rauch, A. Tsimicalis

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Osteogenesis Imperfecta (OI) is a genetic disorder of childhood onset that causes frequent fractures after minimal physical stress. To date, OI research has focused on medically- and surgically-oriented outcomes with little attention on the perspective of the affected child. It is a challenge to elicit the child’s voice in health care, in other words, their own perspective on their symptoms, but software development offers a way forward. Sisom (Norwegian acronym derived from ‘Si det som det er’ meaning ‘Tell it as it is’) is an award-winning, rigorously tested, interactive, computerized tool that helps children with chronic illnesses express their symptoms to their clinicians. The successful Sisom software tool, that addresses the child directly, has not yet been adapted to attend to symptoms unique to children with OI. The purpose of this study was to develop a Sisom paper prototype for children with OI by seeking the perspectives of end users, particularly, children with OI and clinicians. Our descriptive qualitative study was conducted at Shriners Hospitals for Children® – Canada, which follows the largest cohort of children with OI in North America. Purposive sampling was used to recruit 12 children with OI over three cycles. Nine clinicians oversaw the development process, which involved determining the relevance of current Sisom symptoms, vignettes, and avatars, as well as generating new Sisom OI components. Data, including field notes, transcribed audio-recordings, and drawings, were deductively analyzed using content analysis techniques. Guided by the following framework, data pertaining to symptoms, vignettes, and avatars were coded into five categories: a) Relevant; b) Irrelevant; c) To modify; d) To add; e) Unsure. Overall, 70.8% of Sisom symptoms were deemed relevant for inclusion, with 49.4% directly incorporated, and 21.3% incorporated with changes to syntax, and/or vignette, and/or location. Three additions were made to the ‘Avatar’ island. This allowed children to celebrate their uniqueness: ‘Makes you feel like you’re not like everybody else.’ One new island, ‘About Me’, was added to capture children’s worldviews. One new sub-island, ‘Getting Around’, was added to reflect accessibility issues. These issues were related to the children’s independence, their social lives, as well as the perceptions of others. In being consulted as experts throughout the co-creation of the Sisom OI paper prototype, children coded the Sisom symptoms and provided sound rationales for their chosen codes. In rationalizing their codes, all children shared personal stories about themselves and their relationships, insights about their OI, and an understanding of the strengths and challenges they experience on a day-to-day basis. The child’s perspective on their health is a basic right, and allowing it to be heard is the next frontier in the care of children with genetic diseases. Sisom OI, a methodological breakthrough within OI research, will offer clinicians an innovative and child-centered approach to capture this neglected perspective. It will provide a tool for the delivery of health care in the center that established the worldwide standard of care for children with OI.

Keywords: child health, interactive computerized communication tool, participatory approach, symptom management

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