Browsing by Author "Dimitropoulos, Gina"
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Item Open Access A Phenomenological Study on the Experience of Composing Rap Lyrics among ‘at-risk’ Youth(2017) Young, Amber; Nicholas, David; Benzies, Karen; Dimitropoulos, GinaExisting literature exploring the integration of Hip Hop in therapeutic contexts predominately focuses on utilizing the music in a receptive fashion, while a limited amount of literature has explored active techniques (i.e., lyric composition). Utilizing a qualitative phenomenological method, this study explored the experience of composing Hip Hop lyrics of young people who have been labelled ‘at risk’ (N=5). From the participant interviews emerged seven categories related to the experience of composing Hip Hop: (a) Hip Hop as a constant in one’s life, (b) Descriptions of the composing process, (c) Hip Hop song composition is therapeutic, (d) Hip Hop supports expression, (e) Remixing the story: Constructing and living the story we tell of ourselves, (f) Acts of resistance: ‘Each one, teach one’, and (g) Delivery of content: Messages within messages. The findings are discussed in relation to existing literature and implications are offered for the clinical social work context.Item Open Access A protocol for the formative evaluation of the implementation of patient-reported outcome measures in child and adolescent mental health services as part of a learning health system(2024-07-15) McCabe, Erin; Dyson, Michele; McNeil, Deborah; Hindmarch, Whitney; Ortega, Iliana; Arnold, Paul D.; Dimitropoulos, Gina; Clements, Ryan; Santana, Maria J.; Zwicker, Jennifer D.Abstract Background Mental health conditions affect one in seven young people and research suggests that current mental health services are not meeting the needs of most children and youth. Learning health systems are an approach to enhancing services through rapid, routinized cycles of continuous learning and improvement. Patient-reported outcome measures provide a key data source for learning health systems. They have also been shown to improve outcomes for patients when integrated into routine clinical care. However, implementing these measures into health systems is a challenging process. This paper describes a protocol for a formative evaluation of the implementation of patient-reported measures in a newly operational child and adolescent mental health centre in Calgary, Canada. The purpose is to optimize the collection and use of patient-reported outcome measures. Our specific objectives are to assess the implementation progress, identify barriers and facilitators to implementation, and explore patient, caregivers and clinician experiences of using these measures in routine clinical care. Methods This study is a mixed-methods, formative evaluation using the Consolidated Framework for Implementation Research. Participants include patients and caregivers who have used the centre’s services, as well as leadership, clinical and support staff at the centre. Focus groups and semi-structured interviews will be conducted to assess barriers and facilitators to the implementation and sustainability of the use of patient-reported outcome measures, as well as individuals’ experiences with using these measures within clinical care. The data generated by the patient-reported measures over the first five months of the centre’s operation will be analyzed to understand implementation progress, as well as validity of the chosen measures for the centres’ population. Discussion The findings of this evaluation will help to identify and address the factors that are affecting the successful implementation of patient-reported measures at the centre. They will inform the co-design of strategies to improve implementation with key stakeholders, which include patients, clinical staff, and leadership at the centre. To our knowledge, this is the first study of the implementation of patient-reported outcome measures in child and adolescent mental health services and our findings can be used to enhance future implementation efforts in similar settings.Item Open Access A study protocol for implementing Canadian Practice Guidelines for Treating Children and Adolescents with Eating Disorders(2024-01-05) Couturier, Jennifer L.; Kimber, Melissa; Ford, Catherine; Coelho, Jennifer S.; Dimitropoulos, Gina; Kurji, Ayisha; Boman, Jonathan; Isserlin, Leanna; Bond, Jason; Soroka, Chelsea; Dominic, Anna; Boachie, Ahmed; McVey, Gail; Norris, Mark; Obeid, Nicole; Pilon, David; Spettigue, Wendy; Findlay, Sheri; Geller, Josie; Grewal, Seena; Gusella, Joanne; Jericho, Monique; Johnson, Natasha; Katzman, Debra; Chan, Natalie; Grande, Chloe; Nicula, Maria; Clause-Walford, Drew; Leclerc, Anick; Loewen, Rachel; Loewen, Techiya; Steinegger, Cathleen; Waite, Elizabeth; Webb, Cheryl; Brouwers, MelissaAbstract Background Eating disorders have one of the highest mortality rates among psychiatric illnesses. Timely intervention is crucial for effective treatment, as eating disorders tend to be chronic and difficult to manage if left untreated. Clinical practice guidelines play a vital role in improving healthcare delivery, aiming to minimize variations in care and bridge the gap between research and practice. However, research indicates an active guideline implementation approach is crucial to effective uptake. Methods Mixed methods will be used to inform and evaluate our guideline implementation approach. Semi-structured focus groups will be conducted in each of the eight provinces in Canada. Each focus group will comprise 8–10 key stakeholders, including clinicians, program administrators, and individuals with lived experience or caregivers. Qualitative data will be analyzed using conventional content analysis and the constant comparison technique and the results will be used to inform our implementation strategy. The study will then evaluate the effectiveness of our implementation approach through pre- and post-surveys, comparing changes in awareness, use, and impact of the guidelines in various stakeholder groups. Discussion Through a multifaceted implementation strategy, involving the co-creation of educational materials, tailored training, and context-specific strategies, this study intends to enhance guideline uptake and promote adherence to evidence-based practices. Our study will also contribute valuable information on the impact of our implementation strategies.Item Open Access Adapting and adopting highly specialized pediatric eating disorder treatment to virtual care: a protocol for an implementation study in the COVID-19 context(2021-04-08) Couturier, Jennifer; Pellegrini, Danielle; Miller, Catherine; Agar, Paul; Webb, Cheryl; Anderson, Kristen; Barwick, Melanie; Dimitropoulos, Gina; Findlay, Sheri; Kimber, Melissa; McVey, Gail; Lock, JamesAbstract Background The COVID-19 pandemic has negatively impacted individuals with eating disorders; resulting in increased symptoms, as well as feelings of isolation and anxiety. To conform with social distancing requirements, outpatient eating disorder treatment in Canada is being delivered virtually, but a lack of direction surrounding this change creates challenges for practitioners, patients, and families. As a result, there is an urgent need to not only adapt evidence-based care, including family-based treatment (FBT), to virtual formats, but to study its implementation in eating disorder programs. We propose to study the initial adaptation and adoption of virtual family-based treatment (vFBT) with the ultimate goal of improving access to services for youth with eating disorders. Methods We will use a multi-site case study with a mixed method pre/post design to examine the impact of our implementation approach across four pediatric eating disorder programs. We will develop implementation teams at each site (consisting of therapists, medical practitioners, and program administrators), provide a remote training workshop on vFBT, and offer ongoing consultation during the initial implementation phase. Therapists will submit videorecordings of their first four vFBT sessions. We propose to study our implementation approach by examining (1) whether the key components of standard FBT are maintained in virtual delivery measured by therapist self-report, (2) fidelity to our vFBT model measured by expert fidelity rating of submitted videorecordings of the first four sessions of vFBT, (3) team and patient/family experiences with vFBT assessed with qualitative interviews, and (4) patient outcomes measured by weight and binge/purge frequency reported by therapists. Discussion To our knowledge, this is the first study to evaluate an implementation strategy for virtually delivered FBT for eating disorders. Challenges to date include confirming site participation and obtaining ethics approval at all locations. This research is imperative to inform the delivery of vFBT in the COVID-19 context. It also has implications for delivery in a post-pandemic era where virtual services may be preferable to patients and families living in remote locations, where access to specialized services is extremely limited. Trial registration ClinicalTrials.gov NCT04678843 , registered on December 21, 2020.Item Open Access Adapting Descriptive Psychological Phenomenology to Include Dyadic Interviews: Practical Considerations for Data Analysis(NSUWorks - The Qualitative Report, 2019-02-23) Tkachuk, Michelle; Russell-Mayhew, Shelly; Kassan, Anusha; Dimitropoulos, GinaDyadic interviews are an approach to qualitative data collection designed to understand the meaning pairs of individuals make from experiences. The greatest benefit of dyadic interviews, and perhaps a reason for their gaining momentum in the literature, is that they encourage participants to interact, resulting in detailed and complex descriptions of phenomena. However, dyadic interviews pose challenges to qualitative researchers. Researchers must figure out how to account for the presence of two interviewees, any differences in perspective, and interactions. Unfortunately, no known study demonstrates how the interactions of dyadic interviews can be analyzed in accordance with a methodological approach. Rather, researchers tend to observe pre-existing methods without direct mention of modification for conducting and analyzing dyadic interviews. Thus, the degree to which participant interactions are being analyzed in current studies remains unknown. In the following paper, we use Giorgi’s (2009) descriptive psychological phenomenology as an exemplar for how dyadic interviews may be applied to qualitative investigations. The theoretical fit of dyadic interviews with Giorgi’s approach, proposed modifications, and their limitations, are discussed.Item Embargo An Examination of Patients’ Experiences with Navigation Services in Alberta’s Healthcare System(2024-06-20) Rabi, Sarah; Tang, Karen; Santana, Maria; McBrien, Kerry; Dimitropoulos, GinaBackground: The concept of patient navigation (PN) was first envisioned to assist marginalized cancer patients access appropriate and timely healthcare resources. While this understanding of PN may still hold for a subgroup of programs today, the expansion of PN over the past 30 years has resulted in a diverse set of interventions with distinct care settings, patient eligibility criteria, navigator training, and program objectives. Noting this, our study sought to better understand how PN has evolved by gathering information on patients’ perspectives and interactions with PN programs across Alberta. Our objectives were to (i) explore patients’ current experiences with PN programs, and (ii) identify the features of PN felt to be of particular value to patients. Methods: To address these objectives, we conducted an interpretive descriptive study to collate the experiences of adult patients with longitudinal exposure to Albertan PN programs (involvement for greater than or equal to one month). Participant recruitment occurred via key informant sampling with navigators across Alberta. One-on-one semi-structured interviews were conducted to explore patient experiences with PN and their understanding of it as a broader concept. Inductive thematic analysis and interpretive exercises were subsequently performed to construct a coherent message from the data. Continued collaboration with two patient partners was maintained throughout the study to ensure responsiveness to patient priorities. Results: This study involved 23 participants with experience using nurse navigators, transition navigators, and lay community health navigators. Irrespective of navigation type, the participants’ stories were tethered by their navigators’ promotion of seamless and personalized care, as well as their ability to seemingly humanize the healthcare system. This was accomplished through a set of participant-identified navigator characteristics, including approachability, accessibility, and comprehensive systems knowledge. While the identified functions and characteristics of navigators were consistent across participants, how these components were operationalized varied based on the program’s setting and the particular needs of each patient. Conclusion: As a patient-centred intervention, understanding patients’ experiences and valuations of PN is critical to distilling the essence of the intervention. This research directly addresses ongoing knowledge gaps surrounding contemporary understandings of PN, particularly from patients’ perspectives.Item Open Access An exploratory study of challenges and successes in implementing adapted family-based treatment in a community setting(2018-12-03) Astrachan-Fletcher, Ellen; Accurso, Erin C; Rossman, Setareh; McClanahan, Susan F; Dimitropoulos, Gina; Le Grange, DanielAbstract Although family-based treatment (FBT) is accepted as the first-line treatment for adolescent anorexia nervosa, studies show that it is infrequently used by clinicians in community settings. To elucidate some of the barriers to implementing this evidence-based treatment, mixed (quantitative and qualitative) methods were used in this exploratory study to examine therapist experiences with FBT. Twelve clinicians (N = 12) at a community treatment center retrospectively reported on their experiences with FBT training and supervision in FBT. A subset of clinicians (n = 7) additionally completed a structured interview about their experiences in using FBT. Results demonstrate that therapists endorsed certain common misconceptions about FBT prior to training, but that negative beliefs about FBT decreased after its implementation in their setting. These findings suggest that increased education about evidence-based treatments may diminish negative stereotypes about such treatments, which may ultimately increase their uptake in community settings. Sustainability of FBT is discussed in the context of how this community setting incorporated FBT principles into their ongoing clinical practice.Item Open Access Association between childhood adversities and premature and potentially avoidable mortality in adulthood: a population-based study(2023-10-18) Bhattarai, Asmita; Dimitropoulos, Gina; Bulloch, Andrew G.; Tough, Suzanne C.; Patten, Scott B.Abstract Background The association of childhood adversities with mortality has rarely been explored, and even less studied is the question of whether any excess mortality may be potentially preventable. This study examined the association between specific childhood adversities and premature and potentially avoidable mortality (PPAM) in adulthood in a representative sample of the general population. Also, we examined whether the associations were potentially mediated by various adult socioeconomic, psychosocial, and behavioral factors. Methods The study used data from the National Population Health Survey (NPHS-1994) linked to the Canadian Vital Statistics Database (CVSD 1994–2014) available from Statistics Canada. The NPHS interview retrospectively assessed childhood exposure to prolonged hospitalization, parental divorce, prolonged parental unemployment, prolonged trauma, parental problematic substance use, physical abuse, and being sent away from home for doing something wrong. An existing definition of PPAM, consisting of causes of death considered preventable or treatable before age 75, was used. Competing cause survival models were used to examine the associations of specific childhood adversities with PPAM in adulthood among respondents aged 18 to 74 years (rounded n = 11,035). Results During the 20-year follow-up, 5.4% of the sample died prematurely of a cause that was considered potentially avoidable. Childhood adversities had a differential effect on mortality. Physical abuse (age-adjusted sub-hazard ratio; SHR 1.44; 95% CI 1.03, 2.00) and being sent away from home (age-adjusted SHR 2.26; 95% CI 1.43,3.57) were significantly associated with PPAM. The associations were attenuated when adjusted for adulthood factors, namely smoking, poor perceived health, depression, low perceived social support, and low income, consistent with possible mediating effects. Other adversities under study were not associated with PPAM. Conclusion The findings imply that the psychological sequelae of childhood physical abuse and being sent away from home and subsequent uptake of adverse health behavior may lead to increased risk of potentially avoidable mortality. The potential mediators identified offer directions for future research to perform causal mediation analyses with suitable data and identify interventions aimed at preventing premature mortality due to potentially avoidable causes. Other forms of adversities, mostly related to household dysfunction, may not be determinants of the distal health outcome of mortality.Item Open Access Can the adverse childhood experiences (ACEs) checklist be utilized to predict emergency department visits among children and adolescents?(2021-09-25) Bhattarai, Asmita; Dimitropoulos, Gina; Marriott, Brian; Paget, Jaime; Bulloch, Andrew G. M.; Tough, Suzanne C.; Patten, Scott B.Abstract Background Extensive literature has shown an association of Adverse Childhood Experiences (ACEs) with adverse health outcomes; however, its ability to predict events or stratify risks is less known. Individuals with mental illness and ACE exposure have been shown to visit emergency departments (ED) more often than those in the general population. This study thus examined the ability of the ACEs checklist to predict ED visits within the subsequent year among children and adolescents presenting to mental health clinics with pre-existing mental health issues. Methods The study analyzed linked data (n = 6100) from two databases provided by Alberta Health Services (AHS). The Regional Access and Intake System (RAIS 2016–2018) database provided data on the predictors (ACE items, age, sex, residence, mental health program type, and primary diagnosis) regarding children and adolescents (aged 0–17 years) accessing addiction and mental health services within Calgary Zone, and the National Ambulatory Care Reporting System (NACRS 2016–2019) database provided data on ED visits. A 25% random sample of the data was reserved for validation purposes. Two Least Absolute Shrinkage and Selection Operator (LASSO) logistic regression models, each employing a different method to tune the shrinkage parameter lambda (namely cross-validated and adaptive) and performing 10-fold cross-validation for a set of 100 lambdas in each model were examined. Results The adaptive LASSO model had a slightly better fit in the validation dataset than the cross-validated model; however, it still demonstrated poor discrimination (AUC 0.60, sensitivity 37.8%, PPV 49.6%) and poor calibration (over-triaged in low-risk and under-triaged in high-risk subgroups). The model’s poor performance was evident from an out-of-sample deviance ratio of − 0.044. Conclusion The ACEs checklist did not perform well in predicting ED visits among children and adolescents with existing mental health concerns. The diverse causes of ED visits may have hindered accurate predictions, requiring more advanced statistical procedures. Future studies exploring other machine learning approaches and including a more extensive set of childhood adversities and other important predictors may produce better predictions. Furthermore, despite highly significant associations being observed, ACEs may not be deterministic in predicting health-related events at the individual level, such as general ED use.Item Open Access Canadian practice guidelines for the treatment of children and adolescents with eating disorders(2020-02-01) Couturier, Jennifer; Isserlin, Leanna; Norris, Mark; Spettigue, Wendy; Brouwers, Melissa; Kimber, Melissa; McVey, Gail; Webb, Cheryl; Findlay, Sheri; Bhatnagar, Neera; Snelgrove, Natasha; Ritsma, Amanda; Preskow, Wendy; Miller, Catherine; Coelho, Jennifer; Boachie, Ahmed; Steinegger, Cathleen; Loewen, Rachel; Loewen, Techiya; Waite, Elizabeth; Ford, Catherine; Bourret, Kerry; Gusella, Joanne; Geller, Josie; LaFrance, Adele; LeClerc, Anick; Scarborough, Jennifer; Grewal, Seena; Jericho, Monique; Dimitropoulos, Gina; Pilon, DavidAbstract Objectives Eating disorders are common and serious conditions affecting up to 4% of the population. The mortality rate is high. Despite the seriousness and prevalence of eating disorders in children and adolescents, no Canadian practice guidelines exist to facilitate treatment decisions. This leaves clinicians without any guidance as to which treatment they should use. Our objective was to produce such a guideline. Methods Using systematic review, the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) system, and the assembly of a panel of diverse stakeholders from across the country, we developed high quality treatment guidelines that are focused on interventions for children and adolescents with eating disorders. Results Strong recommendations were supported specifically in favour of Family-Based Treatment, and more generally in terms of least intensive treatment environment. Weak recommendations in favour of Multi-Family Therapy, Cognitive Behavioural Therapy, Adolescent Focused Psychotherapy, adjunctive Yoga and atypical antipsychotics were confirmed. Conclusions Several gaps for future work were identified including enhanced research efforts on new primary and adjunctive treatments in order to address severe eating disorders and complex co-morbidities.Item Open Access Case study of informal online mental health communities on Reddit(2024-06-12) Boettcher, Nick; Lashewicz, Bonnie; Haines-Saah, Rebecca; Dimitropoulos, Gina; Lock, JenniferThe rise of massive informal, user-driven mental health communities on social media presents a novel context for mental health support and promotion offering both transformative opportunities and challenges. The opportunities are especially vital for some individuals given the gaps in mental health services due to provider shortages, system fragmentation, and persistent stigma surrounding serious mental illness. Informal communities endure despite varying expert opinions, even as expert evidence has gathered in support of digital mental health and peer support as viable options for promoting population mental health. The purpose of this study was to investigate the nature of informal online mental health communities through a case study of mental health communities on the discussion platform Reddit. A qualitative instrumental multicase study design was used to examine three Reddit communities organized around general mental health, depression, and anxiety. The case study methodology encompassed three methods: (1) a scoping review of 54 academic studies of depression and anxiety using data collected from Reddit, (2) a qualitative content analysis of 233 user posts containing the term “medical” posted in selected communities over a one-month period, and (3) a reflexive thematic analysis of 8 in-depth interviews with volunteer moderators of selected communities. Findings were synthesized across each analysis to examine the relationality between informal knowledge of informal online mental health communities, academic knowledge generated by researchers, and the expert knowledge associated with population health science and public health practice. Implications of the case study are discussed in terms of policy and research related to digital population and public health in Canada, as well as community-centered methodologies in mental health research that engages with perspectives of Reddit moderators and users.Item Open Access Coming into Focus: Parents’ Experiences of Discovering their Child has Anorexia Nervosa(2019-06-05) Williams, Emily Pauline; Russell-Mayhew, Shelly K.; Dimitropoulos, Gina; Moules, Nancy J.After witnessing from both up close and afar how different families can respond to learning that their child is sick, and most likely has an eating disorder, I became deeply curious about the nuances in these parents’ reactions. I wondered about why some parents take fast action in helping their children, while others seem complacent or hesitant to recognize or admit that anything troublesome is happening. These curiosities propelled me into this research, where I sought to better understand how parents discover that their child has anorexia nervosa. My aim for this philosophical hermeneutic inquiry was to speak to parents who had discovered that their child was or had been experiencing anorexia nervosa. I interviewed 12 parents, making up nine families with a child with anorexia nervosa and asked about their discovery experiences. Findings from interviews and analysis revealed that discovering one’s child has/had anorexia nervosa was incredibly complex. Parents’ experiences illustrated that they were fractured by the discovery and by the illness, questioning their competencies and actions as parents. It was evident that the discovery was a continuous, ambiguous process, and at times information was both revealed and concealed from parents. Finally, interviews exposed the unspeakable nature of anorexia nervosa, and ways parents coped with the devastating impacts that anorexia nervosa had on their child, their family, and themselves. I conclude with implications for both research and clinical practice, where I make a case for greater supports being made available for parents during these chaotic and ambiguous times. Every parent that I interviewed shared that they felt left in the dark, without basic information regarding their child’s current status and possible prognosis. Parents felt unsure of how their lives had and were about to change, understandably, feeling enormous pressures and confusion as to how to support and care for their child with anorexia nervosa. While the child with anorexia nervosa is the fundamental focus, parents are worthy and in fact desperate for special attention as well.Item Open Access Consequences of child emotional abuse, emotional neglect and exposure to intimate partner violence for eating disorders: a systematic critical review(2017-09-22) Kimber, Melissa; McTavish, Jill R; Couturier, Jennifer; Boven, Alison; Gill, Sana; Dimitropoulos, Gina; MacMillan, Harriet LAbstract Background Child maltreatment and eating disorders are significant public health problems. Yet, to date, research has focused on the role of child physical and sexual abuse in eating-related pathology. This is despite the fact that globally, exposure to emotional abuse, emotional neglect and intimate partner violence are the three of the most common forms of child maltreatment. The objective of the present study is to systematically identify and critically review the literature examining the association between child emotional abuse (EA), emotional neglect (EN), and exposure to intimate partner violence (IPV) and adult eating-disordered behavior and eating disorders. Methods A systematic search was conducted of five electronic databases: Medline, Embase, PsycINFO, CINAHL, and ERIC up to October 2015 to identify original research studies that investigated the association between EA, EN and children’s exposure to IPV, with adult eating disorders or eating-disordered behavior using a quantitative research design. Database searches were complemented with forward and backward citation chaining. Studies were critically appraised using the Quality in Prognosis Studies (QUIPS) tool. Results A total of 5556 publications were screened for this review resulting in twenty-three articles included in the present synthesis. These studies focused predominantly on EA and EN, with a minority examining the role of child exposure to IPV in adult eating-related pathology. Prevalence of EA and EN ranged from 21.0% to 66.0%, respectively. No prevalence information was provided in relation to child exposure to IPV. Samples included predominantly White women. The methodological quality of the available literature is generally low. Currently, the available literature precludes the possibility of determining the extent to which EA, EN or child exposure to IPV have independent explanatory influence in adult eating-related pathology above what has been identified for physical and sexual abuse. Conclusions While a large proportion of adults with eating disorders or eating-disordered behavior report EA, EN, or child exposure to IPV , there is a paucity of high-quality evidence about these relationships.Item Open Access Correction: A qualitative evaluation of team and family perceptions of family-based treatment delivered by videoconferencing (FBT-V) for adolescent Anorexia Nervosa during the COVID-19 pandemic(2022-12-08) Couturier, Jennifer; Pellegrini, Danielle; Grennan, Laura; Nicula, Maria; Miller, Catherine; Agar, Paul; Webb, Cheryl; Anderson, Kristen; Barwick, Melanie; Dimitropoulos, Gina; Findlay, Sheri; Kimber, Melissa; McVey, Gail; Paularinne, Rob; Nelson, Aylee; DeGagne, Karen; Bourret, Kerry; Restall, Shelley; Rosner, Jodi; Hewitt-McVicker, Kim; Pereira, Jessica; McLeod, Martha; Shipley, Caitlin; Miller, Sherri; Boachie, Ahmed; Engelberg, Marla; Martin, Samantha; Holmes-Haronitis, Jennifer; Lock, JamesItem Open Access Developing a provincial patient support network for children and families affected by Tourette syndrome and/or obsessive–compulsive disorder: results of a stakeholder consultation(2021-06-16) Fletcher, Julian; Dimitropoulos, Gina; Martino, Davide; Wilcox, Gabrielle; MacMaster, Frank; Arnold, Paul; Pringsheim, TamaraAbstract Background Tourette syndrome and OCD are disorders that frequently occur in children and cause a high level of disability. In Alberta there is a huge delivery gap in providing healthcare services for children with TS and OCD. A stakeholder consultation was performed to ascertain how service delivery could be improved across the province and to inform the development of a provincial information and support organization, the Tourette OCD Alberta Network. Methods A mixed-methods study was employed: 10 parents were recruited for interview and 140 parents responded to a survey. Results Qualitative data showed there was often an absence of a clear pathway to access healthcare for people with TS and OCD. The negative impact of not receiving treatment, information, and resources in a timely and prompt manner was also revealed. Good clinical practice existed across the province but too often it was hindered by a shortage of knowledge about TS and OCD. In schools, learning for students with TS and OCD was also impaired by educators’ lack of knowledge and preparedness in relation to the disorders. Conclusions This study identified ways that challenges with healthcare access, school learning, and seeking information can be overcome. Skills-based training webinars, educational outreach in schools, and peer support were recognized as actions for improving healthcare outcomes for people with TS and OCD. The aim of the Tourette OCD Alberta Network is to provide services and support that directly address the healthcare service delivery shortfalls shown in this study.Item Open Access Development of the Strengths, Skills, and Goals Matrix: a tool for facilitating strengths-based adolescent and young adult engagement in research(2023-10-04) Allemang, Brooke; Patton, Megan; Greer, Katelyn; Pintson, Karina; Farias, Marcela; Schofield, Keighley; Samuel, Susan; Patten, Scott B.; Sitter, Kathleen C.; Dimitropoulos, GinaAbstract Background The involvement of adolescents and young adults (AYAs) with lived experience of health and mental health conditions as partners in research is increasing given the prominence of participatory approaches to research, including patient-oriented research (POR). Much of the relevant research is conducted by graduate students. While guiding AYA engagement frameworks and models exist, the processes of partnering with AYAs in patient-oriented graduate-level research projects have not been well established. Co-developed tools and practices are required to support strengths-based, developmentally appropriate AYA-graduate student partnerships. Objectives The objectives of this commentary are: (1) to share the processes of partnership between a graduate student and five Young Adult Research Partners (YARP), (2) to describe the co-design and implementation of the Strengths, Skills, and Goals Matrix (SSGM), a tool for facilitating strengths-based AYA engagement in research, and (3) to outline considerations for applying this tool across a variety of research contexts with patient partners. Main body Within the YARP-graduate student partnership, the SSGM offered extensive benefits, including tangible skill development, peer mentorship, and rapport building among all members. This tool offers strategies for strengths-based engagement practices which emphasize AYAs’ preferences and goals throughout POR projects. Practical recommendations and considerations for applying the SSGM within graduate-level research and beyond are described, including the importance of connecting AYAs’ current (and desired) skills to specific tasks within the research project and resulting outputs. Conclusions The SSGM has possible relevance in a variety of settings given its broadly applicable structure. Future research could explore the adaptation, application, and evaluation of the SSGM across research contexts to determine its feasibility and ease of implementation. Patient or public contribution This article was conceived of and co-authored by five young adult research partners. The YARP co-designed the SSGM presented in this article, the figures, and substantially contributed to the preparation of the article.Item Open Access Estimating additional health and social costs in eating disorder care for young people during the COVID-19 pandemic: implications for surveillance and system transformation(2024-04-26) Obeid, Nicole; Coelho, Jennifer S.; Booij, Linda; Dimitropoulos, Gina; Silva-Roy, Patricia; Bartram, Mary; Clement, Fiona; de Oliveira, Claire; Katzman, Debra K.Abstract Background The impact of the COVID-19 pandemic on young people with eating disorders (EDs) and their families was profound, with surging rates of hospitalizations and referrals reported internationally. This paper provides an account of the additional health and social costs of ED care for young people living in Canada incurred during the COVID-19 pandemic, drawing attention to the available data to inform these estimates while noting gaps in data capacities to account for a full view of the ED system of care. Methods Three methodologies were used to capture costs: (1) provincial administrative data holdings available at the Canadian Institute of Health Information (CIHI) were used by Deloitte Access Economics to conduct analyses on costs related to hospitalizations, emergency room visits, outpatient visits with physicians and loss of well-being from being on a waitlist. These were examined across three fiscal years (April 1 to March 31, 2019–2022) to compare costs from one year before to two years after the onset of the pandemic, (2) data collected on support-based community ED organizations and, (3) costs identified by young people, caregivers and health care professionals. Results Estimates of additional health care costs and social costs arising from ED care waitlists were estimated to have increased by 21% across the two years after the onset of the pandemic and is likely to represent an underestimate of costs. Costs related to some standard ED care services (e.g. day treatment programs) and support-based community ED organizations that saw a 118% increase in services during this time, are some examples of costs not captured in the current cost estimate. Conclusions This paper provides a first account of the additional health and social ED care costs associated with the pandemic, which indicate at minimum, a 21% increase. The results invite discussion for more investments in ED services for young people in Canada, as it is unclear if needs are expected to remain elevated. We suggest a call for a national surveillance strategy to improve data holdings to aid in managing services and informing policy. A robust strategy could open the door for much-needed, data-informed, system transformation efforts that can improve ED care for youth, families and clinicians.Item Open Access Examining the experiences of pediatric mental health care providers during the early stage of the COVID-19 pandemic(2023-05-04) Bright, Katherine; Cullen, Emma; Conlon, Olivia; Zulla, Rosslynn T.; Nicholas, David B.; Dimitropoulos, GinaAbstract Background The COVID-19 pandemic fundamentally impacted the way that mental health services were provided. In order to prevent the spread of infection, many new public health precautions, including mandated use of masks, quarantine and isolation, and closures of many in-person activities, were implemented. Public health mandates made it necessary for mental health services to immediately shift their mode of delivery, creating increased confusion and stress for mental health providers. The objective of this study is to understand the impact of pandemics on the clinical and personal lives of mental health providers working with children during the early months of the COVID-19 pandemic, March -June 2020. Methods Mental health providers (n = 98) were recruited using purposive sampling from a public health service in Canada. Using qualitative methods, semi-structured focus groups were conducted to understand the experiences of mental health service providers during the beginning of the COVID-19 pandemic. Results Data from the focus groups were analysed and three main themes emerged: (1) shift to virtual delivery and working from home; (2) concerns about working in person; (3) exhaustion and stress from working through the pandemic. Discussion This study gave voice to mental health providers as they provided continuity of care throughout the uncertain early months of the pandemic. The results provide insight into the impact times of crisis have on mental health providers, as well as provide practical considerations for the future in terms of supervision and feedback mechanisms to validate experiences.Item Open Access Examining the impact of missing data in an undergraduate mental health survey(2023-08-04) Hews-Girard, Julia; Patten, Scott; Dimitropoulos, Gina; Szeto, Andrew; Thannhauser, Jennifer; Duffy, Anne; Rivera, Daniel; King, NathanItem Open Access Examining the Relationship Between Obsessive-Compulsive Symptoms, Genetic Risk and Cortical Thickness in Youth(2019-09-04) Corrigan, Kimberly; Arnold, Paul Daniel; MacMaster, Frank P.; Harris, Ashley D.; Dimitropoulos, GinaObsessive-compulsive disorder (OCD) is a disabling neuropsychiatric disorder that affects approximately 1-3% of the population worldwide. One-third to one-half of individuals with OCD have symptom onset before 15 years of age. The heterogeneous clinical expression of OCD has rendered inconsistent findings from structural imaging studies with small sample sizes. Large scale structural imaging studies are needed to better understand the complicated neurobiology of OCD in child and adolescent population. To assess brain structure, magnetic resonance imaging (MRI) was used. FreeSurfer (Version 6.0) recon-all pathway was used to determine cortical thickness. The cingulate cortex, orbitofrontal cortex and insular cortex were selected as regions of interest. A candidate gene analysis of PTPRD SNP rs7856850 was performed using Illumina Multi-Ethnic Global microarray. Obsessive-compulsive symptom severity was determined using the Child Behaviour Checklist Obsessive-Compulsive Scale (CBCL-OCS). A significant relationship was found between the current CBCL-OCS score and the right posterior cingulate. Increase in symptom severity on the current CBCL-OCS predicted an increase in cortical thickness of the right posterior cingulate. Rs7856850 genotype did not significantly modify the relationship between symptom severity and right posterior cingulate thickness. This a unique large scale pediatric imaging study investigating the association between obsessive-compulsive symptoms and cortical thickness with an additional exploration of a PTPRD SNP variant. The results support the concept that the posterior cingulate is involved in the pathophysiology of OCD. The candidate gene analysis was inconclusive but hopefully, this study will encourage more research in the neurobiology of youth OCD.
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