Browsing by Author "Henry, Richard S."

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    2SLGBTQQIA+ Experiences of Intimate Partner Abuse and Help-Seeking: An Intersectional Scoping Review
    (2023-08-08) Kurbatfinski, Stefan; Whitehead, Jessica; Hodge, Lee; Ulicki, Noah; Madaan, Ridham; Henry, Richard S.; Parente, Isi; Kumbah, Ophilia; Pino, Fritz; Krentz, Hartmut B.; Morris, Martin; Santinele Martino, Alan; Maurer, Katherine; Marshall, Zack
    Background Intimate partner abuse (IPA) encompasses various forms of abuse between intimate partners, including physical, sexual, emotional, financial, legal, cultural, spiritual, religious, and other types of violence. Recent studies challenge cisgender heteronormative representations of IPA by revealing that the prevalence of IPA between Two-Spirit, lesbian, gay, bisexual, trans, queer, questioning, intersex, asexual, and other sexual or gender minority (2SLGBTQQIA+) partners is similar to heterosexual IPA. However, discriminatory beliefs enacted through homophobia, transphobia, racism, sexism, and colonialism uniquely influence 2SLGBTQQIA+ experiences of IPA. Moreover, the lack of service availability and diversity specifically tailored to 2SLGBTQQIA+ communities further complicate efforts to address IPA, exacerbating inequities and impacting well-being. Objectives This scoping review aimed to achieve three main objectives: 1. Identify knowledge strengths and gaps related to IPA among 2SLGBTQQIA+ people; 2. Describe the help-seeking efforts and experiences of 2SLGBTQQIA+ people who have encountered IPA, including interactions with informal supports (e.g., friends, family members) and formal services (e.g., police, counsellors); and 3. Provide evidence-based recommendations to enhance service responsiveness to 2SLGBTQQIA+ communities. Methodology The review protocol was registered on PROSPERO (#CRD42020139639) and followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews (PRISMA-ScR) guidelines. We included qualitative, quantitative, and mixed-method studies that examined help-seeking patterns and outcomes of 2SLGBTQQIA+ people who experience and/or use IPA against partners. A comprehensive search was conducted across multiple databases, including Medline, Embase, PsycInfo, Scopus, CINAHL, Genderwatch, and Social Science Abstracts. From the 5,827 initial results, 1,790 references were screened on full text. A total of 703 peer-reviewed studies focused on 2SLGBTQQIA+ IPA, and of those, 142 specifically examined help-seeking and 2SLGBTQQIA+ IPA. Each reference was screened by at least two members of the review team and data extraction was supported by four authors. Findings were categorized by sexual and gender identity group when possible, with further consideration of intersectionality. Results Most studies examined mixed sexual and gender minority (SGM) samples without providing stratified results. Community-specific studies on IPA were more likely to focus on lesbians, and trans people, followed by studies with bisexual participants, gay men, and Two-Spirit people. Notably, no studies included intersex participants, and there were no specific results available for individuals questioning their sexual and/or gender identity or those who identified as asexual. Emotional abuse or violence was commonly reported as the most prevalent form of IPA among LGBT individuals. Bisexual men and women seemed to experience a higher prevalence of IPA compared to lesbians or gay men. Many studies revealed that 2SLGBTQQIA+ individuals were often unaware that the control, violence, or manipulation they experienced in their intimate relationships could be classified as abuse, acting as a barrier to seeking support or leaving abusive relationships. This lack of recognition was often attributed to gendered discourses that centre cisheteronormative relationships and overlook 2SLGBTQQIA+ specific forms of abuse. Other significant barriers across all groups included a lack of knowledge about available services, the absence of 2SLGBTQQIA+-specific services (and services providers), and anticipated or enacted discrimination from service providers. Negative experiences with accessing police services were commonly reported by many identity groups, while LGBT individuals also expressed dissatisfaction with legal services, indicating limited opportunities for seeking justice. Counsellors and friends were often regarded as positive sources of support. Key Messages Based on this review, the following areas require attention: 1. Critical changes are needed to gender-based violence services, particularly violence shelters, to properly respond to 2SLGBTQQIA+ communities. Many services perpetuate gender norms and engage in discriminatory actions that impede adequate support, including a significant service gap for both cis and trans male-identified individuals. 2. Ensuring justice for 2SLGBTQQIA+ people who experience violence is essential, necessitating attention to formal legal systems, policing, and transformative justice. 3. Counselling services are a strength and a valuable resource for 2SLGBTQQIA+ people in relation to IPA. It is crucial to support this sector, including measures to reduce individual costs and increase accessibility. 4. Increased education and training are needed for service providers working in formal services to reduce stigma and misconceptions and improve service interactions. 5. Educational curricula in schools should be adapted to include 2SLGBTQQIA+ IPA, enabling individuals to recognize experiences of abuse and support one another. 6. Informal support from friends is a crucial resource, and its effectiveness could be enhanced by establishing stronger connections to collective care initiatives. 7. Research and service design need to meaningfully integrate intersectional frameworks that better respond to the full diversity of 2SLGBTQQIA+ communities. 8. There is an urgent need for a collective impact model that addresses abuse prevention, coordinated service navigation pathways, evaluation of informal and formal supports, shared values (intersectional and trauma-informed care), and increased funding. By implementing these recommendations, progress can be made in addressing the gaps and challenges identified in this review leading to improved IPA supports and services for 2SLGBTQQIA+ communities.
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    Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial
    (2022-10-28) Thombs, Brett D.; Levis, Brooke; Carrier, Marie-Eve; Dyas, Laura; Nordlund, Julia; Tao, Lydia; Aguila, Kylene; Bourgeault, Angelica; Konrad, Violet; Sauvé, Maureen; Connolly, Kerri; Henry, Richard S.; Østbø, Nora; Levis, Alexander W.; Kwakkenbos, Linda; Malcarne, Vanessa L.; El-Baalbaki, Ghassan; Hudson, Marie; Wurz, Amanda; Culos-Reed, S. N.; Platt, Robert W.; Benedetti, Andrea
    Abstract Background More people with rare diseases likely receive disease education and emotional and practical support from peer-led support groups than any other way. Most rare-disease support groups are delivered outside of the health care system by untrained leaders. Potential benefits may not be achieved and harms, such as dissemination of inaccurate information, may occur. Our primary objective was to evaluate the effects of a rare-disease support group leader education program, which was developed collaboratively by researchers, peer support group leaders, and patient organization leaders, compared to waitlist control, on peer leader self-efficacy among scleroderma support group leaders. Methods The trial was a pragmatic, two-arm partially nested randomised controlled trial with 1:1 allocation into intervention or waitlist control. Eligible participants were existing or candidate peer support group leaders affiliated with a scleroderma patient organization. Leader training was delivered in groups of 5–6 participants weekly for 13 weeks in 60–90 min sessions via the GoToMeeting® videoconferencing platform. The program included 12 general leader training modules and one module specific to scleroderma. Primary outcome was leader self-efficacy, measured by the Support Group Leader Self-efficacy Scale (SGLSS) immediately post-intervention. Secondary outcomes were leader self-efficacy 3 months post-intervention; emotional distress, leader burnout, and volunteer satisfaction post-intervention and 3 months post-intervention; and program satisfaction among intervention participants post-intervention. Results One hundred forty-eight participants were randomised to intervention (N = 74) or waitlist (N = 74). Primary outcome data were provided by 146 (99%) participants. Mean number of sessions attended was 11.4 (standard deviation = 2.6). Mean program satisfaction score (CSQ-8) was 30.3 (standard deviation = 3.0; possible range 8–32). Compared to waitlist control, leader self-efficacy was higher post-intervention [SGLSS; 16.7 points, 95% CI 11.0–22.3; standardized mean difference (SMD) 0.84] and 3 months later (15.6 points, 95% CI 10.2–21.0; SMD 0.73); leader volunteer satisfaction was significantly higher at both assessments, emotional distress was lower post-intervention but not 3 months later, and leader burnout was not significantly different at either assessment. Conclusions Peer support group leader education improved leader self-efficacy substantially. The program could be easily adapted for support group leaders in other rare diseases. Trial registration: NCT03965780 ; registered on May 29, 2019.
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    The Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program: protocol for a two-arm parallel partially nested randomized controlled feasibility trial with progression to full-scale trial
    (2021-11-27) Nordlund, Julia; Henry, Richard S.; Kwakkenbos, Linda; Carrier, Marie-Eve; Levis, Brooke; Nielson, Warren R.; Bartlett, Susan J.; Dyas, Laura; Tao, Lydia; Fedoruk, Claire; Nielsen, Karen; Hudson, Marie; Pope, Janet; Frech, Tracy; Gholizadeh, Shadi; Johnson, Sindhu R.; Piotrowski, Pamela; Jewett, Lisa R.; Gordon, Jessica; Chung, Lorinda; Bilsker, Dan; Levis, Alexander W.; Turner, Kimberly A.; Cumin, Julie; Welling, Joep; Fortuné, Catherine; Leite, Catarina; Gottesman, Karen; Sauve, Maureen; Rodríguez-Reyna, Tatiana S.; Larche, Maggie; van Breda, Ward; Suarez-Almazor, Maria E.; Wurz, Amanda; Culos-Reed, Nicole; Malcarne, Vanessa L.; Mayes, Maureen D.; Boutron, Isabelle; Mouthon, Luc; Benedetti, Andrea; Thombs, Brett D.
    Abstract Background Systemic sclerosis (scleroderma; SSc) is a rare autoimmune connective tissue disease. We completed an initial feasibility trial of an online self-administered version of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program using the cohort multiple randomized controlled trial (RCT) design. Due to low intervention offer uptake, we will conduct a new feasibility trial with progression to full-scale trial, using a two-arm parallel, partially nested RCT design. The SPIN-SELF Program has also been revised to include facilitator-led videoconference group sessions in addition to online material. We will test the group-based intervention delivery format, then evaluate the effect of the SPIN-SELF Program on disease management self-efficacy (primary) and patient activation, social appearance anxiety, and functional health outcomes (secondary). Methods This study is a feasibility trial with progression to full-scale RCT, pending meeting pre-defined criteria, of the SPIN-SELF Program. Participants will be recruited from the ongoing SPIN Cohort ( http://www.spinsclero.com/en/cohort ) and via social media and partner patient organizations. Eligible participants must have SSc and low to moderate disease management self-efficacy (Self-Efficacy for Managing Chronic Disease (SEMCD) Scale score ≤ 7.0). Participants will be randomized (1:1 allocation) to the group-based SPIN-SELF Program or usual care for 3 months. The primary outcome in the full-scale trial will be disease management self-efficacy based on SEMCD Scale scores at 3 months post-randomization. Secondary outcomes include SEMCD scores 6 months post-randomization plus patient activation, social appearance anxiety, and functional health outcomes at 3 and 6 months post-randomization. We will include 40 participants to assess feasibility. At the end of the feasibility portion, stoppage criteria will be used to determine if the trial procedures or SPIN-SELF Program need important modifications, thereby requiring a re-set for the full-scale trial. Otherwise, the full-scale RCT will proceed, and outcome data from the feasibility portion will be utilized in the full-scale trial. In the full-scale RCT, 524 participants will be recruited. Discussion The SPIN-SELF Program may improve disease management self-efficacy, patient activation, social appearance anxiety, and functional health outcomes in people with SSc. SPIN works with partner patient organizations around the world to disseminate its programs free-of-charge. Trial registration ClinicalTrials.gov NCT04246528 . Registered on 27 January 2020