This paper addresses the need for methodological expansions that enable critical examination of the situated nature of occupation and enact transformative research agendas. Participatory digital methodologies offer a potential way forward given their critical underpinnings and have been proposed as particularly appropriate to facilitate engagement of children and youth. This paper provides a critical methodological review of interdisciplinary research with children and youth that has utilized one of three participatory digital methodologies (i.e., digital storytelling, participatory videos and participatory geographic information systems) for transformative research addressing social and health inequities in ways that also attend to occupation. Working with a sample of 20 research articles, analysis focused on critically considering how the examples demonstrated participation of children and youth, enacted transformation, and addressed occupation. All three methodologies demonstrated strengths as participatory methodologies in involving children and youth within research and action processes, although with challenges and tensions related to power sharing. Transformation at the personal level was often claimed, with fewer examples addressing social transformation. Knowledge relevant to the situated nature of occupation, occupational spaces, and occupational injustice emerged. This review demonstrates that participatory digital methodologies offer a promising direction forward in enacting a transformative occupation-based research agenda that involves working with children, youth, and other community members.
3 July 2019 in Augmentative and Alternative Communication
High-tech communication aids are one form of augmentative and alternative communication (AAC) intervention offered to children following an assessment process to identify the most appropriate system based on their needs. Professional recommendations are likely to include consideration of child characteristics and communication aid attributes. Recommendations may be influenced by contextual factors related to the cultural work practices and service context of professionals involved, as well as by contextual factors from the child’s life including their family environment and wider settings. The aim of this study was to explore the influence of cultural and contextual factors on the real-time decision-making processes of specialized AAC professionals in the UK. A total of six teams were recruited to the study. Each team carried out an assessment appointment related to a communication aid recommendation for a child and family. Following the appointment, each team participated in a focus group examining their decision-making processes during the preceding assessment. Inductive coding was used to analyse the transcribed data, and three organizing themes emerged relating to the global theme of Cultural and Contextual Influencers on communication aid decision-making. An explanatory model was developed to illustrate the funnelling effect that contextual factors may have on decision-making, which can substantially alter the nature and timing of a communication aid recommendation. Implications for clinical practice and future research are discussed.
2 January 2018 in Augmentative and Alternative Communication
A fundamental requirement of a supportive language development for young children who need aided communication is that an aided communication system is made available and its use is supported. There is limited information about the age at which children are typically provided with a communication aid or about how aided communication is used in everyday situations. Using questionnaire-based interview data, this study investigated (a) the pattern of provision of communication aids to 84 children and adolescents, (b) parents’ and professionals’ evaluation of the quality of communication across contexts, and (c) availability and use of aided communication in these contexts. The age at which the participants received their first aided system varied considerably across the group; however, most were considerably older than the age at which children with typical development usually begin to speak. Parents and professionals rated most everyday situations as good communication situations but reported that the participants did not have their main form of expressive language available in many of these situations, or did not use it much. Parents rated their child’s education in relation to aided language positively, but many professionals indicated that they had limited knowledge about the participant’s use of aided communication outside of the school environment, or about the parents’ attitudes. The study gives insights into the language learning situation of children and adolescents who develop aided communication.
15 February 2014 in Developmental Medicine & Child Neurology
Aim: The aim of this study was to develop an observer‐rated measure of aesthetic, physical, social, and opportunity‐related qualities of leisure activity settings for young people (with or without disabilities).Method: Eighty questionnaires were completed by sets of raters who independently rated 22 community/home activity settings. The scales of the 32‐item Measure of Environmental Qualities of Activity Settings (MEQAS; Opportunities for Social Activities, Opportunities for Physical Activities, Pleasant Physical Environment, Opportunities for Choice, Opportunities for Personal Growth, and Opportunities to Interact with Adults) were determined using principal components analyses. Test–retest reliability was determined for eight activity settings, rated twice (4–6wk interval) by a trained rater.Results: The factor structure accounted for 80% of the variance. The Kaiser‐Meyer‐Olkin Measure of Sampling Adequacy was 0.73. Cronbach's alphas for the scales ranged from 0.76 to 0.96, and interrater reliabilities (ICCs) ranged from 0.60 to 0.93. Test–retest reliabilities ranged from 0.70 to 0.90.Interpretation: Results suggest that theMEQAShas a sound factor structure and preliminary evidence of internal consistency, interrater, and test–retest reliability. TheMEQASis the first observer‐completed measure of environmental qualities of activity settings. TheMEQASallows researchers to assess comprehensively qualities and affordances of activity settings, and can be used to design and assess environmental qualities of programs for young people.
There has been increasing attention to quality of life for families supporting children with disabilities internationally; however, there is minimal research on family quality of life (FQOL) in low-income countries, and specifically in African contexts. This study explored how Ethiopian families of children with disabilities conceptualised FQOL and what they perceived their support needs related to FQOL were. Using a qualitative exploratory descriptive design, we interviewed Ethiopian family members of children with various disabilities. Audio-recorded interviews were transcribed verbatim and translated into English with professional translation assistance. We analysed translated transcripts inductively based on Braun and Clarke’s approach to thematic analysis. We found that spirituality was core to families and that they described FQOL in terms of their relationships within the immediate family and with the community. Additionally, families wanted to be self-sufficient and provide for themselves, but with the additional challenges of raising a child with a disability and pervasive poverty, they recognised their need for more support. Therefore, providing holistic, family-centred services to Ethiopian families of children with disabilities can contribute to enhancing FQOL.