Quality of Life

Students: Sofia Alfred and Lina Khoja
Supervisors: Melanie Anderson, Zahi Touma, and Lisa Engel
Background/Purpose: Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disease affecting multiple organ systems. Approximately 33 to 43% of individuals with SLE experience cognitive impairments (CI) such as declines in attention/concentration, verbal fluency, visuo-spatial constructions, memory, processing speed and/or executive functions. Patients report significant effects of CI on Health Related Quality of Life (HRQoL), health status, and social participation roles. However, the quantitative data regarding the relationship of CI on these outcomes has not been synthesized. The objective of this review is to critically appraise and synthesize literature on the relationship of CI on HRQoL, health status, and social participation roles in individuals with SLE. Methods: Six electronic databases were searched using a wide search strategy and the support of a librarian. Two reviewers (SA, LK) independently completed all phases of the review (title/abstract screening, full-article selection, quality rating, extraction), and a third reviewer resolved disagreement (LE). Forward and backward citation searches of included articles were completed to ensure relevant articles were identified. Fourteen articles were selected for this review. Results and conclusion: Five thousand six hundred fifty- two titles were identified and screened. Fourteen articles were included in the data extraction process. Twelve of the fourteen articles found the presence of CI negatively correlated with individuals’ HRQoL and social participation roles such as employment status, academic performance and valued life activities. The most common cognitive domains assessed in these studies were memory, attention, language and executive function. The two articles that did not find a relationship had a small sample size and unclear methodology. There was heterogeneity of measures used between studies: eight articles used different cognitive batteries, two articles used a self- report cognitive measure, and the remaining four articles used a brief cognitive screening measure to assess cognition. Three different HRQoL measures were used in the four articles examining HRQoL; all articles examining social role participation used different measures to assess social role participation. Studies were unable to be pooled for meta-analysis secondary to the heterogeneity across measures used. Occupational Therapists are rarely involved in SLE care, thus advocating for OT involvement with SLE due to the CI patients are experiencing will be monumental for future care.

QOL2 Belonging through sport participation for disabled youths: a scoping review
Students: Winnie Zhao and Kirtana Thirumal
Supervisors: Rebecca Renwick and Denise DuBois
Background: Belonging is central to how young adults with intellectual/developmental disabilities (IDD) experience community inclusion (Renwick et al., 2019). Although sport has been broadly understood to facilitate belonging in various populations, knowledge gaps exist for young adults (ages 18-35) with IDD. Purpose: This scoping review aimed to characterize how belonging is conceptualized in literature examining sport participation for young adults with IDD. Rigorous methodological standards guided this scoping review (Arksey & O’Malley, 2005; Colquhoun et al., 2017). Method: Data were extracted from 39 included articles using the Belonging Framework (Renwick et al., 2019). Findings: Eleven studies included the words “belonging”, and two studies had findings reflecting all four subcomponents of belonging. Common concepts related to belonging were socialization (n=33), self-statements (e.g. self-concept) (n=26), and engagement (n=23). Conclusions: These findings suggest that belonging is not well-conceptualized in the literature for young adults with IDD who participate in sport. Future research should examine belonging from the perspectives of young adults with IDD and establish a comprehensive belonging framework.

Students: Melissa McKinnon and Ellissa Land
Supervisors: Anne Hunt, Dayna Greenspoon, and Laura McAdam
Purpose: To examine the literature to determine what is known about interventions that support self-determination in children with neuromuscular conditions. The objectives of this study were to: (1) identify what is known about interventions that support self-determination in children with neuromuscular conditions; (2) summarize what is currently known about these interventions; (3) identify knowledge gaps and directions for future research. Methods: A scoping review was conducted of four electronic databases of peer-reviewed literature. Articles were included if they described an intervention for supporting self-determination in children aged 23 months-24 years with a neuromuscular condition. Two independent reviewers assessed articles for inclusion, extracted data, and identified themes. Results: The initial search identified 2578 records and seven articles were included in the final review. Four studies tested interventions including equine assisted therapy, solution focused coaching, a social engagement group, and a life skills program. Two articles described interventions including adapted play therapy and a care centre. One study examined perspectives on gaps in transitional care. Concepts related to self-determination commonly discussed across the studies included autonomy, independence, and choice. Conclusions: There are promising interventions for supporting self-determination in children with neuromuscular conditions. Future research should aim to address current gaps in the literature.

Students: Agata Zawisza and Martina Sykula
Supervisors: Rebecca Renwick and Denise DuBois
Introduction: A previous study entitled the Voices of Youth (VOY) project revealed that belonging matters for youth with intellectual and developmental disabilities (IDD), including Autism Spectrum Disorder (ASD). The VOY project identified the Belonging Framework, composed of four components (Renwick et al., 2019). Objective: This study aimed to explore similarities and/or differences in experiences and perspectives on belonging between youths with ASD and youths with other IDD labels. Exploration was guided by two components of the Belonging Framework: social relationships and engagement with similar people (Renwick et al., 2019). Methods: This secondary analysis utilized a basic qualitative design. Video-recorded interviews, transcripts, and coding from the VOY project was collected and screened for relevance to the two components. Data from 23 participants (aged 13-24) included in the VOY project was extracted and thematically analyzed to compare perspectives and experiences held within each group. Findings: Four themes depicting similarities and differences between the groups emerged: Social relationships: Important but challenging; Seeking understanding of disability in relationships; Motivations for relationships; and Relationship spaces. Conclusion: Youths with ASD experience belonging differently than youths with other IDDs. Recognizing these differences can allow occupational therapists working with these populations to become more client-centred and enable belonging.

Students: Janany Jeyasundaram and Luisa Cao
Supervisor: Barry Trentham
Background: Trauma experienced in one generation can affect the health and well-being of subsequent generations, such as impairing life skills, personal contentment, behaviour patterns, and sense of self. This phenomenon has predominantly been explored with descendants of European refugees, and is not fully understood from an occupational perspective. Purpose: This research explores how descendants of Tamil and Vietnamese refugees experience intergenerational trauma in their occupational lives. Methods: Using qualitative narrative inquiry, twelve adult children of Tamil and Vietnamese refugees residing in the Greater Toronto Area (GTA) participated in semi-structured interviews. Narratives were thematically analyzed. Findings: Factors within sociohistorical, cultural, and familial contexts can influence the occupational lives of second-generation refugees. In response, second-generation refugees may engage in individual and communal healing practices. Implications: Findings from this study provides insights into the occupational lives of second-generation Tamil and Vietnamese refugees in the GTA and their diverse struggles and needs.

Students: Manilyn Ong and Jocelyn Scannell
Supervisors: Jane Davis and Hanna Wolf
Background: Performing arts workers who are also caregivers must navigate competing roles to support their loved ones as well as pursue their passions in an unpredictable industry. Research has shown that maintaining role and work-life balance is important for health and well-being. However, there is currently limited research on competing roles and maintaining work-life balance for performing arts workers who are also caregivers. Objective: The primary aim of this study is to describe the characteristics and life situations of performing arts workers who are also caregivers, as well as the perceived barriers to and strategies for managing their competing roles and work-life balance. Methods: A survey design was used to gather information from performing arts workers who are also caregivers. Data from the survey were analyzed using descriptive statistics and content analysis. Results: A thematic analysis identified interacting themes that influence the management of the two roles and work-life balance: work, caregiving, self, and negotiate. Conclusions: The ability to engage in the two roles and manage work-life balance is determined by how the themes interact. The self identifies strategies to address barriers and also negotiates between the two roles which can either support engagement or derail performing arts work.

Students: Anastasia Podolak and Tiffany Chu
Supervisors: Rebecca Renwick and Denise DuBois
Background: For youths (ages 13-24) with intellectual and developmental disabilities (IDD), feeling a sense of belonging is a fundamental need and a key contributor to experiencing community life. The Voices of Youths project (VOYP) contributed to a broad understanding of belonging by illuminating the perspectives of youths with various IDD. Yet, questions remain as to whether youths with autism spectrum disorder (ASD), who typically encounter social challenges, experience belonging differently than youths with other IDD. This secondary analysis deepened understandings of belonging by exploring the perspectives of youths with ASD compared to youths with other IDD. Methods: Through employing thematic analysis, existing video-recorded interview data of 24 youths with IDD were examined and compared across the diagnostic labels. Results: Results indicated that not all youths with differing IDD labels experience belonging in the same way. Differences were noted between the ASD group and those with other IDD. Implications: These findings may inform those involved with youths with IDD on how to best support this population’s sense of belonging.

Students: Candice Tay and Susan Wang
Supervisor: Sander Hitzig
Background: Hand function plays a major role in the successful performance of activities of daily living, such as working, grooming, and eating independently. An important component of independent eating requires the individual to have sufficient hand strength, dexterity, and function to open food packaging. Impaired hand function can cause difficulty or inability to open food packaging, leading an individual to avoid certain food groups with hard-to-open packaging. Currently, the literature has taken a quantitative approach, and focusing on either hand function or food packaging, without the synthesis of both topic together. Methods: This study used a qualitative design to yield new findings and provide insight into specific challenges faced by individuals with hand impairments. Purposeful sampling was used to recruit six participants living with a functional hand impairment, receiving either inpatient or outpatient rehabilitation at St. John’s Rehab (SJR). Participants were asked questions about their experiences with food packaging, assistive tools they were using, and how they felt their hand impairment impacted their ability to eat independently. Participants were given several food packages that SJR clinicians identified as difficult-to-open for individuals with hand impairment, and were asked to open these packages while providing feedback on aspects of the packaging. Interviewees were then asked to open the packages again, with the open of using several tools. Results: Five major themes were identified through the analysis of interview transcripts and video-taped recordings: 1) Challenging factors, 2) Facilitating factors of packaging, 3) Ideal components of packaging, 4) Feelings and Emotions, and 5) Strategies and Support. Participants also identified a lack of education or functional therapy in regards to eating strategies, following their hand impairments. Conclusion: Occupational therapists are an ideal healthcare professional to take on this initiative as they have the expertise in promoting and retraining activities of daily living.