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“It’s not a simple answer.” A qualitative studyto explore how healthcare providers can bestsupport families with a child with autism spectrumdisorder and overweight or obesity

MCPHERSON, Amy C
PEREZ, Arnaldo
BUCHHOLZ, Annick
FORHAN, Mary
BALL, Geoff D C
January 2021

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Purpose: This qualitative study aimed to explore the experiences of parents supporting their child with Autism Spectrum Disorder (ASD) and overweight or obesity (OW/OB), including their weight management support needs.

 

Methods: Interview transcripts were analysed using inductive thematic analysis. Nine parents (n = 9 mothers) of ten children with ASD (7 males, 3 females) participated in individual semi-structured interviews.

 

Results: The three themes developed were: (1) Our journey to obtain weight management support; (2) I need real-world solutions; and (3) The what, who and how of our weight management needs. Parents reported being proactive in seeking weight management support for their child but were disappointed with the services offered. Resources were not tailored to the child’s complex nutrition and behavioural issues or their abilities and functioning. A multidisciplinary approach that integrated both disability and weight management expertise was desired, but not experienced. A range of formal and informal programs were recommended.

 

Conclusion: This study provides a call to action for supports that ensure children with ASD and OW/OB receive integrated, individualised support to maximise their health and wellness.

Coordination of return-to-work for employees on sick leave due to common mental disorders: facilitators and barriers

HOLMLUND, Lisa
HELLMAN, Therese
ENGBLOM, Monika
KWAK, Lydia
SANDMAN, Lars
TöRMKVIST, Lena
BRäMBERG, Elizabeth Björk
December 2020

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Purpose: To identify facilitators of and barriers to the coordination of return-to-work between the primary care services, the employee, and the employers from the perspective of coordinators and employees on sick leave due to common mental disorders (CMDs).Material and methods:

 

Descriptive qualitative study. Semi-structured interviews were conducted with eighteen coordinators and nine employees on sick leave due to CMDs. The Consolidated Framework for implementation Research (CFIR) was used as a starting point for the interview guides and in the thematic analysis of data.

 

Results: The results show facilitators and barriers related to the CFIR domains“intervention characteristics,” outer setting,” inner setting,” and“characteristics of individuals.”Positive attitudes, an open dialogue in a three-party meeting, and a common ground for the sick leave process at the primary care centre facilitated coordination, while an unclear packaging, conflicts at the employee’s workplace, and a lack of team-based work were examples of barriers.

 

Conclusion: The results indicate a need for the detailed packaging of coordination; formalization of coordinators’ qualifications and levels of training; and acknowledgment of the role of organizational factors in the implementation of coordination. This is important to further develop and evaluate the efficacy of coordination.

"Autism is me": an investigation of how autistic individuals make sense of autism and stigma

BOTHA, Monique
DIBB, Bridget
FROST, David M
2020

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There are many different perspectives for understanding autism. These perspectives may each convey different levels of stigma for autistic individuals. This qualitative study aimed to understand how autistic individuals make sense of their own autism and experience the stigma attached to autism. The study used critical grounded theory tools. Participants (N1⁄420) discussed autism as central to their identity, and integral to who they are. While participants thought of autism as value neutral, they expressed how society confers negative meanings onto autism, and thus, them. The findings also indicate that different understand- ings of autism confer different levels of stigma. Participants expressed constant exposure to stigma and managed this stigma in different ways. Such methods included reframing to more positive understandings of autism, the reclamation of language, and using concealment and disclosure stra- tegically. The implications of these findings are discussed further in the article.

Environmental pre-requisites and social interchange: the participation experience of adolescents with autism spectrum disorder in Zurich

KRIEGER, Beate
PISKUR, Barbara
SCHULZE, Christina
BEURKENS, Anna
MOSER, Albine
May 2020

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Aim: Participation of adolescents with autism spectrum disorder hardly occurs in settings outside of home and school. Little is known about how their participation is influenced by environmental factors. This study explored how and why adolescents with autism spectrum disorder perceive aspects of their environment as facilitators or barriers to their participation outside of home and school.

 

Method: This explanatory case study explored the participation experiences of adolescents with autism spectrum disorder (15–21 years) from Zurich and surroundings with in-depth interviews and photo-elicitation, using photos made by the participants during activities outside of home and school. Data was analysed with a 7-step procedure.

 

Result: The presence of two main themes seemed necessary to facilitate participation outside of home and school: “environmental prerequisites to attend activities”, which consists of five subthemes, such as “the company of trusted persons” and “the provision of knowledge and information”, and “social interchange and engagement”, which consists of three subthemes and describes how actual involvement can be supported.

 

Conclusion: Our findings highlight the influence of trusted persons on adolescents with autism spectrum disorder, and the need to extend the support network for these adolescents to other individuals, services and society so that their participation in activities can be encouraged.

Politically disabled: barriers and facilitating factors affecting people with disabilities in political life within the European Union

WALTZ, Mitzi
SCHIPPERS, Alice
2020

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Diversity is a current buzzword in politics, but in the EU, people with disabilities are not achieving the gains made by women and ethnic minorities. This research examined barriers and facilitating factors through a literature review and interviews with politicians and political activists in five European countries. Six categories of barriers and facilitating factors were found: networks, recruitment and mentoring, resources (money, time and energy), the “hierarchy of impairments,” accessibility of political spaces and activities, and laws and policies. Key recommendations include removing access barriers to political participation, from voting to holding office, including physical and procedural barriers in political spaces; ensuring that equalities legislation covers politicians; eliminating barriers imposed by benefits systems; promoting direct support for political activists, candidates and office-holders with disabilities, including access to necessary services and supports; encouraging parties to recruit and mentor disabled people with leadership potential; and considering quotas and job-sharing.

  • Not many disabled people are active in politics. In the EU, about 15% of people have an impairment, but only around 1% of politicians do.
  • Inclusion at school and in social groups makes it easier to get into political jobs or to try to get elected.
  • Some disabled political activists, volunteers, candidates and office-holders don’t get the support they need.
  • Political parties can help by finding disabled people, supporting them, and helping them get involved in politics.
  • Our article provides several ideas about how to make it easier for disabled people to run for office and work in politics.

Arranging play activities with missing items to increase object-substitution symbolic play in children with autism spectrum disorder

LEE, Gabrielle T
QU, Kezheng
HU, Xiaoyi
JIN, Ning
HUANG, Jingiing
March 2020

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Purpose: Many children with autism spectrum disorder do not have symbolic play skills. The purpose of this study was to evaluate the effects of a training procedure on the acquisition, maintenance, and generalization of object-substitution symbolic play in children with autism spectrum disorder.

 

Methods: A single-case experimental design (multiple-probe across four behaviors) was used. One girl (5 years) and two boys (4–5 years) participated in this study. The training procedure involved withdrawing necessary items in play activities, supplying multiple substitutes, and providing hierarchical assistive prompts. Each child’s symbolic play responses across baseline, intervention, and follow-up conditions were recorded and graphed. Data analysis involved visual inspection of graphs.

 

Results: The results indicated that the procedure effectively increased and maintained object-substitution symbolic play. Generalization to untaught play activities occurred in all children, and symbolic play increased in the free play setting for one child.

 

Conclusions: Arranging play activities with missing items increased opportunities for children to engage in symbolic play. The training procedure can be used in clinical and educational settings as an initial step to establish and improve complex play behavior in children with autism spectrum disorder who lack such skills.

Inclusion through folk high school in Sweden – the experience of young adult students with high-functioning autism

HUGO, Martin
HEDEGAARD, Joel
January 2020

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Purpose: The purpose of this study is to provide a description of the learning environment at Folk High School for participants with high-functioning autism and to examine their learning experience at Folk High School.

 

Methods: A qualitative interview study was conducted with 21 participants who were enrolled at Folk High School which had been adapted to suit young adults with high-functioning autism. The interviews were analysed by means of a thematic content analysis which resulted in the identification of 6 themes related to learning experiences at Folk High School.

 

Results: The participants enjoyed themselves and felt secure at Folk High School. They felt that they and their academic endeavours were suitably recognised, acknowledged, and understood. They reported that the teaching was suitably adapted for them and they felt that they could succeed in their studies. A frequent report that they made concerned their experience of clear structures in the teaching process and its predictability. The participants stated that Folk High School has the ability to satisfy each participant’s needs, which entailed lower levels of perceived stress than what they had experienced in their previous schooling. The participants experienced personal development during their time at Folk High School.

 

Conclusions: Folk High School, and its special character, is able to successfully satisfy the needs of participants with high-functioning autism. Many of the participants, for the first time in their lives, experienced a sense of inclusion in an educational system and felt that they could succeed in their studies. However, there exists a risk that they become institutionalised, which entails that the participants function well primarily in Folk High School’s safe and caring environment.

‘Whose agenda? Who knows best? Whose voice?’ Co-creating a technology research roadmap with autism stakeholders

PARSONS, Sarah
YUILL, Nicola
GOOD, Judith
BROSNAN, Mark
2019

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Technologies play vital roles in the learning and participation of autistic people and yet have mostly been conceptualised according to a medical model of disability. In this stakeholder review, the comments of 240 participants from a two-year seminar series focusing on autism and technology were analysed to co-construct an understanding of how research could develop more inclusively. Our socio-cultural analysis shows that stakeholders were very positive about the roles that technologies can play in many areas of life, but that these technologies need to be developed and evaluated according to the needs and preferences of autistic people and their families. We propose an inclusive common social framework for research based on the core themes of social inclusion, perspectives, and participation and agency. Such a framework requires the field to recognise that some current practices are exclusionary and that a commitment to action is needed in order to make positive changes.

Expectations management; employer perspectives on opportunities for improved employment of persons with mental disabilities in Kenya

EBUENYI, Ikenna D
VAN DER HAM, Aida J
BUNDERS-AELEN, Joske F G
REGEER, Barbara J
January 2019

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Purpose: In Kenya, the employment rate for persons with disabilities is about 1% compared to 73.8% for the general population, and the situation is even worse for persons with mental disabilities. Persons with mental disabilities are often regarded as “mad”, and stand little or no chance of employment. We undertook an exploratory study with employers and potential employers to understand factors that hinder or facilitate their employment and to gain insight into employers’ perceptions of mental disability.

 

Materials and methods: We adopted a mixed method study design, including in-depth interviews (n = 10) and questionnaires (n = 158) with (potential) employers in Kenya to explore the barriers and facilitators of employment for persons with mental disabilities.

 

Results: Out of the 158 employers who completed the questionnaire, only 15.4% had ever employed persons with mental disabilities. The perceptions that these persons are not productive and may be violent was associated with an unwillingness to employ them (OR: 10.11, 95%CI: 2.87–35.59 and OR: 3.6, 95%CI: 1.34–9.64, respectively). The possession of skills was the highest reported facilitator of employing persons with mental disabilities. Employers suggested that information about mental illness and the disclosure by prospective employees with mental disabilities are relevant for the provision of reasonable accommodation in the workplace.

 

Conclusion: Possession of skills and disclosure by persons with mental disabilities could improve their employability. Information targeted at all actors including employers, employees, government, and policymakers is necessary for balancing employers and employees expectations.

Nationwide implementation of a national policy for evidence-based rehabilitation with focus on facilitating return to work: a survey of perceived use, facilitators, and barriers

BJORK BRAMBERG, Elisabeth
JENSEN, Irene
KWAK, Lydia
October 2018

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Aim: The aim is to assess whether the national policy for evidence-based rehabilitation with a focus on facilitating return-to-work is being implemented in health-care units in Sweden and which factors influence its implementation.

 

Methods: A survey design was used to investigate the implementation. Data were collected at county council management level (process leaders) and clinical level (clinicians in primary and secondary care) using web surveys. Data were analyzed using SPSS, presented as descriptive statistics.

 

Results: The response rate among the process leaders was 88% (n = 30). Twenty-eight percent reported that they had already introduced workplace interventions. A majority of the county councils’ process leaders responded that the national policy was not clearly defined. The response rate among clinicians was 72% (n = 580). Few clinicians working with patients with common mental disorders or musculoskeletal disorders responded that they were in contact with a patient’s employer, the occupational health services or the employment office (9–18%). Nearly, all clinicians responded that they often/always discuss work-related problems with their patients.

 

Conclusions: The policy had been implemented or was to be implemented before the end of 2015. Lack of clearly stated goals, training, and guidelines were, however, barriers to implementation.

What do Dutch general education teachers do to facilitate the social participation of students with SEBD?

DE LEEUW, Renske Ria
DE BOER, Anke
MINNAERT, Alexander
2018

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Few studies have addressed the daily practice of applied teacher strategies aimed at facilitating the social participation of students with social-emotional problems or behavioural difficulties (SEBD). In this paper, we present two interlinked studies that address this topic. The main study reports on the development of the Teacher Strategy Questionnaire on Social Participation in the Classroom (TSQ-SPC). We tested the questionnaire’s construct validity by performing a second-order confirmatory factor analysis. The follow-up study presents the results of a survey of 163 Dutch general primary education teachers of inclusive classes using a modified version of the TSQ-SPC. It provides insights on the strategies that teachers apply in their daily practice to facilitate positive social participation of students with SEBD. The findings of both studies suggest that general primary education teachers apply a limited repertoire of strategies. Accordingly, there is an urgent need for further research focusing on the development of interventions and revisions of the pre- and in-service teacher development curricula aimed at adequately supporting and preparing general education teachers.

Gender and diagnostic impact on everyday technology use: a differential item functioning (DIF) analysis of the Everyday Technology Use Questionnaire (ETUQ)

KOTTORP, Anders
MALINOWSKY, Camilla
LARSSON-LUND, Maria
NYGARD, Louise
May 2018

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Background: As the use of everyday technology is increasingly important for participation in daily activities, more in-depth knowledge of everyday technology use in relation to diagnosis and gender is needed. The purpose of this study was to investigate the stability of the perceived challenge of a variety of everyday technologies across different samples of varying diagnoses including both males and females.

 

Methods: This cross-sectional study used 643 data records from clinical and research samples, including persons with dementia or related disorders, acquired brain injury, intellectual disability, various mental or medical disorders, and adults without known diagnoses. The Everyday Technology Use Questionnaire, comprising 93 everyday technology artifacts and services (items) measuring the level of everyday technology challenge and relevance of and perceived ability to use these was used for data gathering. A two-faceted Rasch model in combination with differential item functioning (DIF) analyses were used for comparing item hierarchies across samples.

 

Results: Only three items (3.2%) demonstrated a clinically relevant DIF by gender, and nine items (9.7%) by diagnosis.

 

Discussion: The findings support a stable hierarchy of everyday technology challenge in home and community that can facilitate planning of an accessible and inclusive society from a technological departure point

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