Becoming “Me” in a Hostile World: Queer, Disability, and Self‐Identification in South Korea

Despite more autism research taking place than ever before, there is a disconnect between the current landscape of autism research and what autistic people and their allies want from research. While participatory research has been proposed as a potential solution, we know little about how researchers (particularly, early career researchers) employ this approach. We interviewed 25 researchers (14 early career and 11 established researchers) about their views and experiences of participatory autism research. Through reflexive thematic analysis of interview and focus group data, we identified three themes. First, our participants emphasised the flexible nature of participatory research, and the many forms it can take; yet noted that this flexibility could cause confusion. Second, our participants highlighted the importance of building relationships with research partners, while commenting on the challenges around effective communication and working with diverse groups of people who may have limited research experience. Finally, participants described the challenges of working within academic environments that are not conducive to participatory research (e.g. due to limited time, funding and support). We discuss these issues with regard to changes required at both an individual and systemic level, ensuring that efforts are made to meaningfully involve autistic people and their allies in all stages of the research process.Lay abstract‘Participatory autism research’ refers to ways of involving autistic people and their allies (e.g. family members) in making decisions about research. These decisions can include what research gets done, how it gets done and how research findings are used. While there is more and more interest in participatory autism research, we know little about how researchers at different stages of their careers use this approach. To find out more, we discussed these issues with 25 researchers. Fourteen of these were at an early stage of their careers, and 11 were more senior researchers. We spoke to people in individual interviews or in groups. We then used a technique called thematic analysis to analyse our data, which involved us looking for common topics or ‘themes’ discussed by our participants. What did we find? Our participants told us that participatory autism research was a flexible approach, meaning that autistic people can be involved in research in many different ways. While people viewed this flexibility in a positive way, it also caused some confusion about what does or does not ‘count’ as participatory research. Our participants also spoke about how important it was to build relationships with those involved in their research, but they also said it could be difficult to communicate well with diverse groups of people who may not have much experience of research. Finally, our participants said it was hard to do participatory research when there was not much time, funding or support available to researchers. In this article, we discuss these findings, focusing on what needs to change to ensure that autistic people and their allies are meaningfully involved in autism research.

All authors must have made a significant contribution to the study and must be so familiar with the original data that, e.g., every co-author is able to present a short presentation of the material. To take responsibility for the manuscript’s content, it is crucial that every author has read the paper and has checked it for its completeness. Should any part of the material be found to be duplication or faulty in any way, all authors share the responsibility. Should an author choose not to further co-author a manuscript, not only the author but all co-authors must agree to this in written form. To many authors, it is not clear that their material submitted to a journal is actually considered a duplicate publication. Already published material is given by the following examples: Any extensive abstracts that contain original data (e.g., published in proceedings) that are shared to the community beyond the meeting attendees are considered a publication. If material is published on the website such as a poster or a lecture this too is a publication. Also any reports that are widely circulated can be considered as a publication. Taken together not only publications in journals that are peer reviewed are considered as prior publications. Any manuscript that appears in a journal, be it non-peer reviewed or an online-only publication, is considered to be a previously published article. This also includes manuscripts that have appeared in book chapters. Exceptions are made. For instances, dissertations that appear on an institutional website need not be considered duplicate publications. Moreover, if fractions of the material have been published on a website, this may not be considered of previous publication, however, the editor must be informed that such material exists so that the editor can check for the extent and correctness of the material. At the end of the manuscript, all sources supporting the work should be cited. This is independent of the nature of the source, be it an institutional fund or if support stems from an organization supporting specific interests or cooperate affiliations. Disclosure of conflict of interests does not affect the acceptability of the manuscript. However, it can be important for the reader to know if the authors might be compromised, knowingly or unknowingly, in any manner. The readers should know if all authors had full control of the data in terms of not only assessing the data but also circulating the data. Moreover, it is important to identify if there are financial conflict of interest. Authors who own a significant amount of stocks in a firm or receives honoraria for consulting or lecturing in significant amounts (10,000€ or more) should disclose this information upon submission of the manuscript. All information will be held in confidence during the review process. Please note that also patent issues and equity interests may be considered as a potential conflict of interest. Editors and reviewers may also have conflict of interest. It is the responsibility of the editors and reviewers to immediately identify a potential conflict of interest be it in scientific nature or financially. A common conflict of interest is given when reviewers evaluate a manuscript from authors they have previously collaborated with. In this case, evaluation should be declined. Plagiarism is given when experiments of others are repeated without acknowledgement in the manuscript. Authors are often unaware of the fact that auto-plagiarism takes place when an author pastes and copies sections of their own previous manuscripts such as the methodology. To avoid auto-plagiarism, it is essential to identify that this content has been published previously or simply add a statement that the methodology can be obtained elsewhere followed by citation of this source. Not only will referencing previous work prevent auto-plagiarism, it will also help the journal remain within its page caps. Should a reviewer identify possible fraud or plagiarism, this must be communicated to the editor. The editor will then transfer the issue to the publications committee of the journal, which will then take contact to the authors to receive all relevant information before deciding upon further steps. Should a serious case of fraud or misconduct be identified, this may result in notifying local institutions and retraction of the article. Throughout the physiological societies, it is common understanding that animal experiments can only be justified when alternative methods cannot to same extent warrant insight into science or biomedical training. Nonetheless, it is important that the numbers of animals used as well as the species and the experimental protocol must be considered to minimize adverse effects on the animals such as pain. Attention is required to cohere with animal welfare regulations and best practice. All procedures must confirm with the institutional guidelines for animal care as well as with national and international laws, regulations and understanding. Any animals used in the protocol must have been obtained officially respecting local and national laws and regulations. All measures to minimize unfavourable effects to animals should be used as long as these measures (such as analgesics and anaesthesia) do not interfere with the goal of the study. Muscle relaxants do not eliminate pain nor do they provide anaesthesia. The use of muscle relaxants must therefore be accompanied by appropriate anaesthesia and analgesia. Should the animals be sacrificed after experimentation, the method used must be stated and be in line with respective laws, regulations and guidelines. In addition to adhering to local, national and international laws, it is important that all manuscripts involving human being have been made in accordance with the declaration of Helsinki.11 The Declaration of Helsinki is an official policy document of the World Medical Association (WMA), the global representative body for physicians. It was first adopted by the 18th WMA General Assembly, Helsinki, Finland, June 1964, and amended by the 29th WMA General Assembly, Tokyo, Japan, October 1975; 35th WMA General Assembly, Venice, Italy, October 1983; 41st WMA General Assembly, Hong Kong, September 1989; 48th WMA General Assembly, Somerset West, Republic of South Africa, October 1996; 52nd WMA General Assembly, Edinburgh, Scotland, October 2000; and 59th WMA General Assembly, Seoul, South Korea, October 2008. Note of Clarification on Paragraph 29 added by the WMA General Assembly, Washington 2002. Note of Clarification on Paragraph 30 added by the WMA General Assembly, Tokyo 2004. Here, the 35 paragraphs are given as follows. 1. The World Medical Association (WMA) has developed the Declaration of Helsinki as a statement of ethical principles for medical research involving human subjects, including research on identifiable human material and data. The Declaration is intended to be read as a whole and each of its constituent paragraphs should not be applied without consideration of all other relevant paragraphs. 2. Although the Declaration is addressed primarily to physicians, the WMA encourages other participants in medical research involving human subjects to adopt these principles. 3. It is the duty of the physician to promote and safeguard the health of patients, including those who are involved in medical research. The physician’s knowledge and conscience are dedicated to the fulfilment of this duty. 4. The Declaration of Geneva of the WMA binds the physician with the words, ‘The health of my patient will be my first consideration’, and the International Code of Medical Ethics declares that ‘A physician shall act in the patient’s best interest when providing medical care’. 5. Medical progress is based on research that ultimately must include studies involving human subjects. Populations that are underrepresented in medical research should be provided with appropriate access to the participation in research. 6. In medical research involving human subjects, the well-being of the individual research subject must take precedence over all other interests. 7. The primary purpose of medical research involving human subjects is to understand the causes, development and effects of diseases and improve preventive, diagnostic and therapeutic interventions (methods, procedures and treatments). Even the best current interventions must be evaluated continually through research for their safety, effectiveness, efficiency, accessibility and quality. 8. In medical practice and in medical research, most interventions involve risks and burdens. 9. Medical research is subject to ethical standards that promote respect for all human subjects and protect their health and rights. Some research populations are particularly vulnerable and need special protection. These include those who cannot give or refuse consent for themselves and those who may be vulnerable to coercion or undue influence. 10. Physicians should consider the ethical, legal and regulatory norms and standards for research involving human subjects in their own countries as well as applicable international norms and standards. No national or international ethical, legal or regulatory requirement should reduce or eliminate any of the protections for research subjects set forth in this Declaration. 11. It is the duty of physicians who participate in medical research to protect the life, health, dignity, integrity, right to self-determination, privacy and confidentiality of personal information of research subjects. 12. Medical research involving human subjects must conform to generally accepted scientific principles, be based on a thorough knowledge of the scientific literature, other relevant sources of information and adequate laboratory and, as appropriate, animal experimentation. The welfare of animals used for research must be respected. 13. Appropriate caution must be exercised in the conduct of medical research that may harm the environment. 14. The design and performance of each research study involving human subjects must be clearly described in a research protocol. The protocol should contain a statement of the ethical considerations involved and should indicate how the principles in this Declaration have been addressed. The protocol should include information regarding funding, sponsors, institutional affiliations, other potential conflicts of interest, incentives for subjects and provisions for treating and/or compensating subjects who are harmed as a consequence of participation in the research study. The protocol should describe arrangements for post-study access by study subjects to interventions identified as beneficial in the study or access to other appropriate care or benefits. 15. The research protocol must be submitted for consideration, comment, guidance and approval to a research ethics committee before the study begins. This committee must be independent of the researcher, the sponsor and any other undue influence. It must take into consideration the laws and regulations of the country or countries in which the research is to be performed as well as applicable international norms and standards but these must not be allowed to reduce or eliminate any of the protections for research subjects set forth in this Declaration. The committee must have the right to monitor ongoing studies. The researcher must provide monitoring information to the committee, especially information about any serious adverse events. No change to the protocol may be made without consideration and approval by the committee. 16. Medical research involving human subjects must be conducted only by individuals with the appropriate scientific training and qualifications. Research on patients or healthy volunteers requires the supervision of a competent and appropriately qualified physician or other health care professional. The responsibility for the protection of research subjects must always rest with the physician or other health care professional and never with the research subjects, even though they have given consent. 17. Medical research involving a disadvantaged or vulnerable population or community is only justified if the research is responsive to the health needs and priorities of this population or community and if there is a reasonable likelihood that this population or community stands to benefit from the results of the research. 18. Every medical research study involving human subjects must be preceded by careful assessment of predictable risks and burdens to the individuals and communities involved in the research in comparison with foreseeable benefits to them and to other individuals or communities affected by the condition under investigation. 19. Every clinical trial must be registered in a publicly accessible database before recruitment of the first subject. 20. Physicians may not participate in a research study involving human subjects unless they are confident that the risks involved have been adequately assessed and can be satisfactorily managed. Physicians must immediately stop a study when the risks are found to outweigh the potential benefits or when there is conclusive proof of positive and beneficial results. 21. Medical research involving human subjects may only be conducted if the importance of the objective outweighs the inherent risks and burdens to the research subjects. 22. Participation by competent individuals as subjects in medical research must be voluntary. Although it may be appropriate to consult family members or community leaders, no competent individual may be enrolled in a research study unless he or she freely agrees. 23. Every precaution must be taken to protect the privacy of research subjects and the confidentiality of their personal information and to minimize the impact of the study on their physical, mental and social integrity. 24. In medical research involving competent human subjects, each potential subject must be adequately informed of the aims, methods, sources of funding, any possible conflicts of interest, institutional affiliations of the researcher, the anticipated benefits and potential risks of the study and the discomfort it may entail, and any other relevant aspects of the study. The potential subject must be informed of the right to refuse to participate in the study or to withdraw consent to participate at any time without reprisal. Special attention should be given to the specific information needs of individual potential subjects as well as to the methods used to deliver the information. After ensuring that the potential subject has understood the information, the physician or another appropriately qualified individual must then seek the potential subject’s freely given informed consent, preferably in writing. If the consent cannot be expressed in writing, the non-written consent must be formally documented and witnessed. 25. For medical research using identifiable human material or data, physicians must normally seek consent for the collection, analysis, storage and/or reuse. There may be situations where consent would be impossible or impractical to obtain for such research or would pose a threat to the validity of the research. In such situations the research may be carried out only after consideration and approval of a research ethics committee. 26. When seeking informed consent for the participation in a research study, the physician should be particularly cautious if the potential subject is in a dependent relationship with the physician or may consent under duress. In such situations, the informed consent should be sought by an appropriately qualified individual who is completely independent of this relationship. 27. For a potential research subject who is incompetent, the physician must seek informed consent from the legally authorized representative. These individuals must not be included in a research study that has no likelihood of benefit for them unless it is intended to promote the health of the population represented by the potential subject, the research cannot instead be performed with competent persons and the research entails only minimal risk and minimal burden. 28. When a potential research subject who is deemed incompetent is able to give assent to decisions about participation in research, the physician must seek that assent in addition to the consent of the legally authorized representative. The potential subject’s dissent should be respected. 29. Research involving subjects who are physically or mentally incapable of giving consent, for example, unconscious patients, may be carried out only if the physical or mental condition that prevents giving informed consent is a necessary characteristic of the research population. In such circumstances, the physician should seek informed consent from the legally authorized representative. If no such representative is available and if the research cannot be delayed, the study may proceed without informed consent provided that the specific reasons for involving subjects with a condition that renders them unable to give informed consent have been stated in the research protocol and the study has been approved by a research ethics committee. Consent to remain in the research should be obtained as soon as possible from the subject or a legally authorized representative. 30. Authors, editors and publishers all have ethical obligations with regard to the publication of the results of research. Authors have a duty to make publicly available the results of their research on human subjects and are accountable for the completeness and accuracy of their reports. They should adhere to the accepted guidelines for ethical reporting. Negative and inconclusive as well as positive results should be published or otherwise made publicly available. Sources of funding, institutional affiliations and conflicts of interest should be declared in the publication. Reports of research not in accordance with the principles of this Declaration should not be accepted for publication. 31. The physician may combine medical research with medical care only to the extent that the research is justified by its potential preventive, diagnostic or therapeutic value and if the physician has good reason to believe that the participation in the research study will not adversely affect the health of the patients who serve as research subjects. 32. The benefits, risks, burdens and effectiveness of a new intervention must be tested against those of the best current proven intervention, except in the following circumstances: The use of placebo, or no treatment, is acceptable in studies where no current proven intervention exists; or Where for compelling and scientifically sound methodological reasons, the use of placebo is necessary to determine the efficacy or safety of an intervention and the patients who receive placebo or no treatment will not be subject to any risk of serious or irreversible harm. Extreme care must be taken to avoid abuse of this option 33. At the conclusion of the study, patients entered into the study are entitled to be informed about the outcome of the study and to share any benefits that result from it, for example, access to interventions identified as beneficial in the study or to other appropriate care or benefits. 34. The physician must fully inform the patient that the aspects of the care are related to the research. The refusal of a patient to participate in a study or the patient’s decision to withdraw from the study must never interfere with the patient–physician relationship. 35. In the treatment of a patient, where proven interventions do not exist or have been ineffective, the physician, after seeking expert advice, with informed consent from the patient or a legally authorized representative, may use an unproven intervention if in the physician’s judgement it offers hope of saving life, re-establishing health or alleviating suffering. Where possible, this intervention should be made the object of research, designed to evaluate its safety and efficacy. In all cases, new information should be recorded and, where appropriate, made publicly available.

Gender-related facilitators and barriers to participation in research on aging using fuzzy cognitive mapping.

Introduction There are challenges associated with selecting a qualitative research approach. In a field abundant with terminology and theories, it may be difficult for a pharmacist to know where and how to begin a qualitative research journey. The purpose of this paper is to provide insight into generic qualitative research and to describe the journey of data collection of a novice qualitative researcher in the quest to answer her research question: 'What are the barriers to accessing medicines and pharmacy services for resettled refugees in Queensland, Australia?' Methodology Generic qualitative research draws on the strengths of one or more qualitative approaches. The aim is to draw out participants' ideas about things that are 'outside themselves'; rather than focussing on their inner feelings the research seeks to understand a phenomenon, a process, or the perspectives of participants. Sampling is designed to obtain a broad range of opinions about events and experiences and data collection includes interviews, questionnaires or surveys; thematic analysis is often used to analyse data. When to use Generic qualitative research provides an opportunity to develop research designs that fit researchers' epistemological stance and discipline, with research choices, including methodology and methods, being informed by the research question. Limitations Generic qualitative research is one of many methodologies that may be used to answer a research question and there is a paucity of literature about how to do it well. There is also debate about its validity as a qualitative methodology.

Introduction There are challenges associated with selecting a qualitative research approach. In a field abundant with terminology and theories, it may be difficult for a pharmacist to know where and how to begin a qualitative research journey. The purpose of this paper is to provide insight into generic qualitative research and to describe the journey of data collection of a novice qualitative researcher in the quest to answer her research question: ‘What are the barriers to accessing medicines and pharmacy services for resettled refugees in Queensland, Australia?’ Methodology Generic qualitative research draws on the strengths of one or more qualitative approaches. The aim is to draw out participants’ ideas about things that are ‘outside themselves’; rather than focussing on their inner feelings the research seeks to understand a phenomenon, a process, or the perspectives of participants. Sampling is designed to obtain a broad range of opinions about events and experiences and data collection includes interviews, questionnaires or surveys; thematic analysis is often used to analyse data. When to use Generic qualitative research provides an opportunity to develop research designs that fit researchers’ epistemological stance and discipline, with research choices, including methodology and methods, being informed by the research question. Limitations Generic qualitative research is one of many methodologies that may be used to answer a research question and there is a paucity of literature about how to do it well. There is also debate about its validity as a qualitative methodology.

Until recently the sexuality of individuals with disabilities has largely been ignored or incorrectly assumed to be non-existent. Individuals with disabilities have a range of sexual orientations encompassing both heterosexual and queer identities. In what ways do individuals with disabilities construct their sexual orientation identity? How do women who identify as both disabled and queer develop their multiple identities? Do current models of lesbian identity development or models of disability identity development address the reality of queer women with disabilities identity? This project involved interviews with five queer women with disabilities in the Northwest to understand their subjective experiences of their identity and the process of its development. Interviews were audio-recorded, transcribed, and analyzed with Atlas.ti software. Both identity development models for disability and queer identity could be used to describe either women’s disability identity development or queer identity development. A combination of identity development models best fit these women’s life experiences.

P73 Dietetics Experiential Learning at Diabetes Camp: Findings through Photovoice & Qualitative Analysis

Review question/objective The objective of this review is to analyse and synthesise the best available evidence on the experiences of Indigenous people who engage in health care encounters in Western settings and contexts. The review question is: What are the experiences of Indigenous people engaged in health care encounters in Western settings and contexts? Inclusion Criteria Types of Participants Studies including two groups of participants, regardless of age or gender, will be considered for this systematic review. The first group is persons of Indigenous descent from the following countries and continents appearing most frequently in the literature: North America, South America, New Zealand, Australia, and Scandinavian countries. These countries include peoples such as First Nations, Native Americans, Metis, Inuit, North American Indians, South American Indians, Inca, Maori, Aboriginal and Torres Strait Islander peoples of Australia, and Sapmi. This list is not exhaustive, and any Indigenous population identified in a study will be included. Indigenous populations who immigrate to new countries will be excluded, given that immigrant status can confound Indigenous status. The second group of participants to be considered for inclusion is health care providers who work in Western settings and context, including, but not limited to, nurses, physicians, nutritionists, midwives, social workers, physiotherapists, occupational therapists, speech and language therapists, and respirologists. Phenomena of Interest The phenomenon of interest is the experience of Indigenous people in health care encounters in Western health care settings and context. Health care encounters refer to any interactions between an Indigenous person and a health care provider within the scope of Western health care services. All reasons for health encounters will be considered. Context The context will be Indigenous persons seeking health care services in Western settings and context. These services may be located within urban, rural, or remote health care settings where Western health care services are delivered.

BackgroundResearchers have a responsibility to protect all participants, especially vulnerable participants, from harm. Vulnerability is increasingly understood to be context specific, yet limited guidance is available regarding the vulnerability and agency of research participants in different cultural settings. This study aims to explore research participants’ daily vulnerability and agency, and how these interact with participants’ research experiences in their own words. Researchers’ views and responses were also explored.MethodsA qualitative study was conducted around two scrub typhus research studies in northern Thailand. A thematic analysis was carried out on 42 semi-structured interviews with research participants, their families, researchers and key informants.ResultsThe majority of the research participants belonged to a hill tribe ethnic minority group. Common challenges were related to Thai language barriers, travel difficulties, uncertain legal status, unstable employment, lack of education and healthcare. We did not identify new vulnerabilities but we found that the extent of these vulnerabilities might be underestimated or even hidden from researchers in some cases. Despite these challenges people demonstrated agency in their daily lives and were often motivated and supported in this by family members. The majority of perceived research benefits were related to healthcare and gaining knowledge, while attending follow-up visits could be a burden for some.ConclusionsOur approach to research in culturally and socioeconomically diverse settings should be more responsive to participants’ specific vulnerabilities and abilities evidenced in their daily life, rather than attributing vulnerability on the basis of membership of pre-defined ‘vulnerable groups’. Researchers need to be aware and responsive towards the challenges participants face locally in order to minimise the burdens of research participation whilst allowing participants to benefit from research.

The recent transition of scoring for the United States Medical Licensing Examination (USMLE) Step 1 exam from a numerical grading system to pass/fail system has significant implications for residency applicants. It is anticipated that research productivity will gain greater importance in the evaluation process. To understand how medical institutions can best support students, we seek to understand medical students' motivations and experience conducting research in medical school after the USMLE Step 1 scoring change. This is a mixed-methods, cross-sectional study that examines the motivations and barriers that medical students face in conducting academic or clinical research. A survey study based on a modified questionnaire for medical students was distributed to second-year medical students at a single institution. Mann-Whitney tests were used to analyze differences in attitudes across various subgroups and Pearson correlations quantified the strength of relationships. A thematic analysis was used to examine the qualitative data set. 68 students completed the survey, 35 male and 32 female, and one failed to select an option. 39 students (57.3%) indicated that the USMLE Step 1 transition to pass/fail has influenced their attitudes and beliefs about conducting research in medical school. The most frequently endorsed motivation for medical student research participation was to be more competitive for residency applications [(65/68), 95.6%]. The most frequently endorsed barrier was lack of time [(59/68), 86.8%]. Research participation is correlated with research output (r = 0.49, p < 0.001). Competitiveness of specialty of interest was correlated with research participation (r = 0.36, p < 0.01) but not research output (p > 0.05). There is no difference in research output, participation, or attitudes between genders (p > 0.05). Medical students perceive research participation and productivity as an increasingly important differentiating factor in competitive residency applications as USMLE Step 1 transitions to pass/fail. However, lack of time to engage in research poses a barrier for many students. Efforts that support student endeavors in academic or clinical research are a crucial aspect of the medical school curriculum and should focus on streamlining student research participation as the preclinical curriculum shortens across medical schools. The online version contains supplementary material available at 10.1007/s40670-025-02508-3.

BackgroundChildren are the focus of numerous health interventions throughout the world, yet the extent of children’s meaningful participation in research that informs the adaptation, implementation, and evaluation of health interventions is not known. We examine the type, extent, and meaningfulness of children’s participation in research in qualitative health intervention research.MethodA scoping study was conducted of qualitative published research with children (ages 6–11 years) carried out as part of health intervention research. Following Arksey and O’Malley’s scoping study methodology and aligned with the PRISMA-ScR guidelines on the reporting of scoping reviews, the authors searched, charted, collated, and summarized the data, and used descriptive and content analysis techniques. Ovid MEDLINE was searched from 1 January 2007 to 2 July 2018 using the keywords children, health intervention, participation, and qualitative research. Study selection and data extraction were carried out by two reviewers independently.ResultsOf 14,799 articles screened, 114 met inclusion criteria and were included. The study identified trends in when children were engaged in research (e.g., post-implementation rather than pre-implementation), in topical (e.g., focus on lifestyle interventions to prevent adult disease) and geographical (e.g., high-income countries) focuses, and in qualitative methods used (e.g., focus group). While 78 studies demonstrated meaningful engagement of children according to our criteria, there were substantial reporting gaps and there was an emphasis on older age (rather than experience) as a marker of capability and expertise.ConclusionsDespite evidence of children’s meaningful participation, topical, geographical, and methodological gaps were identified, as was the need to strengthen researchers’ skills in interpreting and representing children’s perspectives and experiences. Based on these findings, the authors present a summary reflective guide to support researchers toward more meaningful child participation in intervention research.

Participatory research involving community engagement is considered the gold standard in Indigenous health research. However, it is sometimes unclear whether and how Indigenous communities are engaged in research that impacts them, and whether and how engagement is reported. Indigenous health research varies in its degree of community engagement from minimal involvement to being community-directed and led. Research led and directed by Indigenous communities can support reconciliation and reclamation in Canada and globally, however clearer reporting and understandings of community-led research is needed. This scoping review assesses (a) how and to what extent researchers are reporting community engagement in Indigenous health research in Atlantic Canada, and (b) what recommendations exist in the literature regarding participatory and community-led research. Eleven databases were searched using keywords for Indigeneity, geographic regions, health, and Indigenous communities in Atlantic Canada between 2001-June 2020. Records were independently screened by two reviewers and were included if they were: peer-reviewed; written in English; health-related; and focused on Atlantic Canada. Data were extracted using a piloted data charting form, and a descriptive and thematic analysis was performed. 211 articles were retained for inclusion. Few empirical articles reported community engagement in all aspects of the research process. Most described incorporating community engagement at the project's onset and/or during data collection; only a few articles explicitly identified as entirely community-directed or led. Results revealed a gap in reported capacity-building for both Indigenous communities and researchers, necessary for holistic community engagement. Also revealed was the need for funding bodies, ethics boards, and peer review processes to better facilitate participatory and community-led Indigenous health research. As Indigenous communities continue reclaiming sovereignty over identities and territories, participatory research must involve substantive, agreed-upon involvement of Indigenous communities, with community-directed and led research as the ultimate goal.

Indigenous peoples were formerly treated more as passive study subjects than active participants in research, demonstrating that the purpose of the research was to marginalise rather than empower them. Therefore, Participatory Action Research (PAR) with indigenous people is a decolonial approach which aims to achieve a better balance between research participants' input, decision-making, and power with research teams. This study examined the role of Indigenous participants in PAR using a Qualitative Secondary Analysis method based on desktop research which was sourced from academic works with related studies. Using thematic analysis, various themes were developed from existing literature to complete the scope of this study. This study's discussion offers examples of useful implementation of PAR with indigenous participants in two case studies. It further makes a case that since it is founded on the ideas of participation and action, PAR is suitable to be applied in studies involving indigenous participants who have historically been colonised and had no voices in research about them.

In contrast to the dominant, post-positivist approaches to research in psychology, participatory action research (PAR) programs aim to democratize knowledge production and participate in social action through explicitly value-based and politicized agendas. Despite the inclusive nature of this work, college students are often left out of PAR collaborations and rarely even exposed to this frame of research. The handful of researcher-educators who have conducted participatory and action-oriented research with undergraduate students report a range of benefits for students, their universities, and the surrounding communities, confirming its importance. Left unaddressed are the key identity processes that unfold during knowledge production and changemaking with undergraduate students. Given that communities of practice and other sociocultural learning science literature robustly document the connection between learning and identity, it stands to reason that students engaging in action research could construct their own action researcher identities. Hence, the current study aimed to build on critical and participatory pedagogy by investigating undergraduate students' action researcher identity processes. This study was undergirded by a transformative ontology (Stetsenko, 2017), which assumes that identity construction is accompanied by and co-constitutes transformative social practices. Therefore, in addition to examining the construction of action researcher identities, this study also documented students' perceived transformations related to their contribution to participatory and action-oriented research. The present study took place within a 20-week undergraduate course that involved the design and execution of participatory and action-oriented research for antiracism led by undergraduate students. To answer the research questions, I drew upon four data sources from 21 student-participants, including: pre-course surveys, midway focus groups, culminating written reflections, and post-course one-on-one interviews. Through thematic analysis (Braun & Clarke, 2006), two identity dimensions emerged--namely, one's affinity for an action researcher identity and one's self-recognition as an action researcher. Participants' profiles of these identity dimensions produced four distinct identity trajectories related to action research: Definitive Action Researchers, En Route Action Researchers, Change Agents with Action Research Tools, and Non-Action Researchers. These differing identity trajectories were informed by several sociohistorical, personal, and emergent factors related to participants' contributions to the course. Additionally, participants reported various levels of transformations related to themselves, their social worlds, and the college classroom. Notably, some students reported ways these levels remained untransformed. Findings from this study have implications for researchers, educators, and activists. This conceptualization of action researcher identity responds to the calls for value-based and agentive scientific inquiry at the level of ontology. Further, findings

Over half of male childhood cancer survivors experience infertility after treatment, which is known to cause distress and impact future quality of life. Sperm banking rates remain low, and little is known about how adolescent and young adult (AYA) males and their families make fertility preservation (FP) decisions. This study examined AYA and parent perceptions of participating in a research study focused on testing a new FP decision tool at the time of cancer diagnosis. Forty-four participants (19 mothers, 11 fathers, 14 male AYAs 12-25 years old) from 20 families completed brief assessments at diagnosis and approximately one month later, including a qualitative interview exploring the impact of study participation. Verbatim transcripts were coded through thematic content analysis using the constant comparison method. Two major themes emerged: (1) a positive effect of participating in the study and (2) a neutral effect (no positive/negative effect of participation). Subthemes that emerged for participants who noted a positive effect included (a) participation prompted deeper thinking, (b) participation influenced family conversations, and (c) participation resulted in altruism/helping others. No participant reported a negative effect. This study demonstrates that participation in family-centered research focused on FP among AYA males, before treatment begins, is perceived as beneficial or neutral at the time of a new cancer diagnosis. These findings provide support for future family-centered FP interventions for this population.