Engaging community members to ensure culturally specific language is used in research: should I use gay, queer, MSM, or this other new acronym?

Researchers often use terminology to define their participant groups that is rooted in a clinical understanding of the group's shared identity(ies). Such naming often ignores the ways that the individuals who comprise these populations identify themselves. One oft-cited benefit of patient-oriented or community-engaged research is that language is local and relevant to impacted communities. This paper aims to contribute to the literature on how this local and relevant language can best be established. We ask how researchers can identify and implement accurate terminology, even when divergent perspectives exist within the communities involved. We draw from our experience with the Expanding Plasma Donation in Canada study, a community-engaged research study, which explored the views of people impacted by the "men who have sex with men" (MSM) blood donation policies in Canada. We describe the collaborative process through which we came to a consensual naming of this population, the challenges we faced, and a set of guiding principles we used to address them. We did not find an all-encompassing term or acronym that worked for all stages of research. Instead, we offer a set of guiding principles that can aid researchers engaging in a similar process: harm reduction, consent and transparency, collaboration and community involvement, recognition of missing voices, and resisting and/or restructuring oppressive standards.

The words and labels that researchers use to describe the communities they study does not always resonate with the actual members of those communities. Doing research in partnership with members of socially disadvantaged groups can help to ensure that the language used in the research is relevant, accurate, and respectful. Researchers studying issues related to men who have sex with men often struggle with knowing what term to use to describe this group of people. While many people may identify as "gay", "queer", "bisexual", or any other term, there are many men who do not identify with these labels but also have sex with men. Previous research on this topic is usually focused on arguing that a specific term or acronym should be adopted. As part of a larger research program to support more inclusive plasma donation, the current paper describes the process our research team undertook to ethically describe this complex community of diverse men who have sex with men. Rather than choosing one specific label to describe the community members in all situations, we describe a set of guiding principles that can be used to help researchers flexibly navigate language depending on the situation and context.

Understanding In-Person and Online Exercise Oncology Programme Delivery: A Mixed-Methods Approach to Participant Perspectives.

Alberta Cancer Exercise (ACE) is an exercise oncology programme that transitioned from in-person to online delivery during COVID-19. The purpose of this work was to understand participants' experiences in both delivery modes. Specifically, survivors' exercise facilitators and barriers, delivery mode preference, and experience with programme elements targeting behaviour change were gathered. A retrospective cohort design using explanatory sequential mixed methods was used. Briefly, 57 participants completed a survey, and 19 subsequent, optional interviews were conducted. Most participants indicated preferring in-person programmes (58%), followed by online (32%), and no preference (10%). There were significantly fewer barriers to (i.e., commute time) (p < 0.01), but also fewer facilitators of (i.e., social support) (p < 0.01), exercising using the online programme. Four themes were generated from the qualitative data surrounding participant experiences in both delivery modes. Key differences in barriers and facilitators highlighted a more convenient experience online relative to a more socially supportive environment in-person. For future work that includes solely online delivery, focusing on building social support and a sense of community will be critical to optimising programme benefits. Beyond the COVID-19 pandemic, results of this research will remain relevant as we aim to increase the reach of online exercise oncology programming to more underserved populations of individuals living with cancer.

Exploring physical activity experiences, barriers, and facilitators among individuals of South Asian heritage living with and beyond cancer.

OBJECTIVES: The purpose of this study was to understand the physical activity (PA) experiences, as well as preferences, barriers, and facilitators to exercise, among individuals of South Asian heritage diagnosed with cancer. DESIGN: A qualitative descriptive design was used. Individuals of South Asian heritage were recruited via a mix of convenience sampling and purposive sampling, with outreach via radio, posters in community settings, and from outreach to participants in current exercise oncology studies. Inclusion criteria included being over the age of 18; diagnosed with any cancer type and stage; pre, during, or post-treatment; able to speak English, Hindi, or Punjabi; and self-identified as South Asian. Data for this study was collected via semi-structured interviews conducted in the participants language of choice. Interviews were transcribed verbatim in the original language and then analyzed using conventional content analysis. For non-English interviews, the codes created through analysis were subsequently translated into English, and back-translated into the original language, to ensure accuracy. These codes were then organized into themes and categories. RESULTS: Eight participants were recruited, with 5 interviews conducted in Punjabi and 3 interviews in English. The three themes that were created from the participant interviews include: (1) Culture, (2) Informational Needs, and (3) The Nature of Exercise Oncology Interventions. Within these themes, categories included barriers and facilitators to PA, as well as PA needs. CONCLUSION: Participants' perspectives provided insights into the PA experiences, barriers, facilitators, and needs of people of South Asian heritage living with and beyond cancer. These results can be used to inform the tailoring of exercise oncology resources to better support physical activity and exercise for this population.

Social Support Behaviours and Barriers in Group Online Exercise Classes for Adults Living with and beyond Cancer: A Qualitative Study.

Social support can be facilitated through exercise programs for people living with cancer, but there is limited research on how best to foster it in online exercise oncology classes. This study examined current training that fitness professionals receive on the provision and facilitation of social support, experiences people living with cancer have with social support, and supportive behaviours and barriers for providing and obtaining support in online group exercise oncology programs in Calgary, Alberta, Canada. Guided by interpretive description methodology, training materials were reviewed, observations of fitness professional training and online exercise classes (n = 10) were conducted, and adults living with and beyond cancer (n = 19) and fitness professionals (n = 15) were interviewed. These data were collected from January 2021 to June 2021. Analysis of the data collected resulted in the identification of three themes: Creating a welcoming environment, helping improve exercise ability and reach goals, and learning to provide and facilitate support online. A catalogue of supportive behaviours that can help to provide and facilitate and barriers that can hinder the provision and obtaining of social support in exercise oncology classes is presented. The findings provide guidance when structuring online classes and inform developing strategies for fitness professionals to use in online classes to foster social support by considering the wants and needs of participants, facilitating support between participants with similar experiences and interests, and integrating support into physical activity.

Improved access yet inequitable experience: gay, bisexual and other men who have sex with men's views of more inclusive criteria for source plasma donation.

BACKGROUND: Canada has incrementally reduced restrictions to blood and plasma donation that impact men who have sex with men, gay, bisexual, and queer men, and some Two Spirit, transgender and non-binary individuals (MSM/2SGBTQ+). Prior to the launch of a pilot program in 2021 enabling some MSM/2SGBTQ + to donate source plasma, we explored the acceptability of the program among individuals who could become eligible to donate in the program. METHODS: We invited men identifying as MSM/2SGBTQ + to participate in two consecutive semi-structured interviews to explore their views on blood and plasma donation policy, plasma donation, and the proposed Canadian plasma donation program. Interview transcripts were analyzed thematically and acceptability-related themes were mapped onto the Theoretical Framework of Acceptability. RESULTS: Twenty-seven men identifying as having sex with men participated in 53 interviews. Eighteen themes were mapped onto the seven construct domains of the Theoretical Framework of Acceptability. Underlying all aspects of acceptability was a tension between four primary values influencing participants' views: altruism, equity, supply sufficiency, and evidence-based policy. The program was viewed as welcome progress on a discriminatory policy, with many excited to participate, yet tension with inequitable aspects of the program undermined support for the program and interest to contribute to it. The high demands of the program are unique for MSM/2SGBTQ + and are only tolerable as part of a program that is an incremental and instrumental step to more equitable donation policies. CONCLUSION: Findings highlight past experiences of exclusion in Canada as a unique and critical part of the context of the donation experience among MSM/2SGBTQ+. Despite the program's goals of greater inclusivity of MSM/2SGBTQ + individuals, the anticipated experience of the program included continued stigmatization and inequities. Future research should seek to understand the experienced views of MSM/2SGBTQ + donors to ensure that as policies change, policies are implemented equitably.

Staff perspectives on barriers and enablers to implementing alternative source plasma eligibility criteria for gay, bisexual, and other men who have sex with men.

BACKGROUND: Canadian Blood Services introduced new eligibility criteria that allows some sexually active gay, bisexual, and other men who have sex with men (gbMSM) to donate source plasma, marking a significant change from time-based deferral criteria. We aimed to identify potential barriers and enablers to implementing the new criteria from the perspective of donor center staff. STUDY DESIGN AND METHODS: We conducted Theoretical Domains Framework-informed interviews with staff from two source plasma donation centers in Canada. RESULTS: We completed 28 interviews between June 2020 and April 2021. Three themes representing eight domains captured key tensions. Valuing inclusive eligibility criteria: staff support inclusive criteria; many were concerned the new criteria remained discriminatory. Investing in positive donor experiences: staff wished to foster positive donor experiences; however, they worried gbMSM donors would express anger and disappointment regarding the new criteria, staff would experience unease over using stigmatizing criteria and convey nonverbal cues of discomfort, and recurring plasma donors may behave inappropriately. Supporting education, training, and transparency of eligibility criteria: participants believed providing in-person training (i.e., to explain criteria rationale, address discomfort, practice responding to donor questions) and ensuring donors and the public were well-informed of the upcoming changes would improve implementation. DISCUSSION: Participant views emphasize the importance of supporting staff through training and transparent communication to optimize the delivery of world-class equitable care for a new cohort of donors who have previously been excluded from plasma donation. Findings inform which staff supports to consider to improve implementation as policies continue to shift internationally.

Coping strategies in active and inactive men with prostate cancer: a qualitative study.

PURPOSE: Prostate cancer can result in a shift in the way men perceive their masculinity. Despite the interest in exercise as a treatment strategy to address masculinity concerns, there is insufficient information about how perceptions may differ in active and inactive men. The aim of this study was to explore how exercise might influence self-perceptions of masculinity in men across the exercise continuum (from active to inactive) and in men receiving different forms of treatment for their prostate cancer, including androgen deprivation therapy. METHODS: Individual, semi-structured interviews were conducted with 15 men. Ten men met aerobic and/or resistance guidelines and were considered active, while five men, considered inactive, reached neither guideline. This study used a grounded theory approach to data analysis, examining masculinity issues in active men and compared them to inactive men. RESULTS: Redefining masculinity emerged as an overarching theme. Subthemes were the various coping strategies men used to redefining masculinity and directly related to their exercise habits. Coping subthemes included re-establishing control, tapping into competition, remaining socially connected, rationalization, and acceptance. CONCLUSIONS: In the active men, dominant coping strategies achieved from exercise included control through active participation, acceptance, competition, and leadership. In inactive men, control was observed with knowledge-seeking behaviors, rationalization, and acceptance. IMPLICATIONS FOR CANCER SURVIVORS: A tailored approach to exercise counseling based upon specific masculine traits and motivations could lead to improved exercise engagement.

Social support and physical activity for cancer survivors: a qualitative review and meta-study.

PURPOSE: Physical activity (PA) is important for well-being and coping among cancer survivors. Social support (SS) encourages adoption and maintenance of PA behavior, and PA contexts can provide opportunities for obtaining support for coping with cancer. The qualitative literature examining cancer survivors' experience with SS in and for PA could inform understanding of behaviors experienced as supportive. The purpose of this meta-study was to synthesize the research on adult cancer survivors' experiences with SS related to PA. METHODS: Following meta-study guidelines, we searched nine databases and retrieved 39 articles describing intervention and observation studies, and extracted, analyzed, and synthesized information addressing SS and PA in cancer survivors. RESULTS: Results emphasized ways that PA contexts facilitate relationships, which are a foundation for obtaining supportive behaviors that enable PA (e.g., providing encouragement and accountability) and assist with coping with cancer (e.g., understanding and talking about cancer). Some themes identified were unique to studies with female breast cancer, advanced cancer, interventions or programs, and that used interviews versus focus groups. CONCLUSIONS: Understanding supportive behaviors could improve PA and coping with cancer in interventions. Future research should focus on identifying supportive behaviors, incorporating theory and methods to address the development of supportive relationships, and recruiting more diverse samples of participants in terms of gender, race/ethnicity, and cancer type. IMPLICATIONS FOR CANCER SURVIVORS: PA can provide opportunities for positive social connections ranging from loose to close social ties, and this research identifies several behaviors in the PA context that may be supportive of PA behavior (e.g., providing actionable information), and coping with cancer (e.g., opportunities but low obligation to talk about cancer).

Facilitators and Barriers to the Implementation of iSPRINT: A Sport Injury Prevention Program in Junior High Schools.

OBJECTIVES: Sport injury is the leading cause of hospitalization in Canadian youth and represents a high burden to the health care system. This study aims to describe the facilitators and barriers to implementation of a sport injury prevention program in junior high school physical education (known as iSPRINT), previously shown to reduce the risk of sport-related injury in youth (age, 11-15 years). METHODS: Focus group data were mapped onto constructs from the Consolidated Framework for Implementation Research (CFIR). Four schools that implemented iSPRINT participated in this study. Forty-seven key stakeholders (teachers, students, principals) participated in 9 semistructured focus groups and 4 interviews. The CFIR was used to guide the focus group discussions, data coding, and analysis using a qualitative content analysis approach. RESULTS: Of the 22 applicable CFIR constructs, 16 were identified in the transcripts. The most significant facilitators to successful implementation efforts included evidence strength and quality, adaptability, implementation climate, culture, and having a high level of compatibility facilitated successful implementation efforts. Barriers to implementation included intervention complexity, planning, and readiness for implementation. Constructs that acted as both a facilitator and a barrier, depending on the context, were self-efficacy, execution, and individual identification with the organization. CONCLUSIONS: Participants in this study reported positive attitudes about implementing iSPRINT, citing evidence strength, adaptability, and constructs related to the organizational setting that contributed to successful implementation. Potential improvements include modifying certain program components, decreasing the number of components, and reducing the equipment required.

The role of social support in physical activity for cancer survivors: A systematic review.

OBJECTIVE: Social support is conceptualized and operationalized in many ways, making it challenging to understand what types of support best predict physical activity (PA) in cancer survivors. This review examined associations between social support and PA among cancer survivors. METHODS: Following PRISMA guidelines, we searched eight databases for studies that reported an association between social support and PA among adult cancer survivors. We conducted an appraisal and a narrative synthesis of the findings from quantitative studies. RESULTS: Fifty studies representing 28 366 participants were included. Studies collectively included concepts addressing the presence of relationships, others' PA behavior, perceptions of being supported, and function/quality. Findings were mixed in suggesting a positive or null association with PA. CONCLUSIONS: While results are not definitive, this review takes a step toward mapping the social support literature in PA for cancer survivors. Limitations include the homogeneity of the participants in extant studies, and the secondary focus on testing the effects of social support on outcomes. Future research systematically testing the effects of social support is important for facilitating PA in this population.

Exercise interventions and their effect on masculinity, body image, and personal identity in prostate cancer-A systematic qualitative review.

OBJECTIVE: Men with prostate cancer face various body composition and psychosocial challenges following diagnosis. Movement-based interventions such as exercise may represent novel strategies to improve these important biopsychosocial changes. This systematic qualitative review aimed to examine the various exercise interventions and their effect on male perception of masculinity, body image, and personal identity. METHODS: A systematic search across nine electronic databases was conducted in July 2017 and repeated in August 2018. Eligible studies included qualitative works examining masculinity, body image, or personal identity within an exercise intervention. Thematic content analysis allowed for qualitative synthesis across numerous studies. RESULTS: Six studies met eligibility criteria for inclusion. Four interventions used multimodal aerobic and resistance training, one incorporated aerobic exercise through football practice, and one utilized a home-based aerobic plus yoga program. Exercise was implicated to improve masculinity through creation of a safe community, allowed for refocusing on valued male traits, provided a source of distraction, and offered a means of establishing control over one's illness. Exercise also facilitated a process of self-reflection secondary to changes in physique and helped to re-establish male self-efficacy. CONCLUSIONS: Regardless of prostate cancer stage, treatment status, or prior androgen deprivation therapy exposure, both aerobic or aerobic and resistance training exerted positive effects on perceived feelings of masculinity, body image, and personal identity.

Perceptions of masculinity and body image in men with prostate cancer: the role of exercise.

PURPOSE: The goal of this study was to explore the association between levels of exercise and patterns of masculinity, body image, and quality of life in men undergoing diverse treatment protocols for prostate cancer. METHODS: Fifty men with prostate cancer (aged 42-86) completed self-report measures. Self-reported measures included the following: the Godin Leisure Time Exercise Questionnaire (GLTEQ), Masculine Self-esteem Scale (MSES), Personal Attributes Questionnaire (PAQ), Body Image Scale (BIS), and the Functional Assessment of Cancer Therapy-Prostate (FACT-P). Masculinity, body image, and quality of life scores were compared between men obtaining recommended levels of exercise (aerobic or resistance) and those not obtaining recommended level of exercise. Secondary outcomes included the association between masculinity, body image, and quality of life scores as they relate to exercise levels. RESULTS: There were significantly higher scores of masculinity (p < 0.01), physical well-being (p < 0.05), prostate cancer specific well-being (p < 0.05), and overall quality of life (p < 0.05) in those obtaining at least 150 min of moderate to vigorous aerobic exercise. In the 48% of men who had never received androgen deprivation therapy, significantly higher levels of masculinity, body image, and quality of life were observed in those meeting aerobic guidelines. CONCLUSIONS: Whether treatment includes androgen deprivation or not, men who participate in higher levels of aerobic exercises report higher levels of masculinity, improved body image, and quality of life than those who are inactive. Future longitudinal research is required evaluating exercise level and its effect on masculinity and body image.