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Indigenous body image amid rapid social and economic change: A reflexive thematic analysis of Wayuu narratives.

The Wayuu, Colombia's largest Indigenous group, are experiencing rapid social, economic, and technological change, including expanding internet access, educational opportunities, and increasing exposure to globalised media. Though the harmful effects of appearance-idealised media imagery on body image are well documented, indigenous body image research remains unevenly distributed across global contexts, with Latin American Indigenous communities particularly underrepresented. This study explored how Wayuu people understand and experience appearance ideals and body image in the context of expanding digital media exposure and rapid sociocultural and economic change. Five focus groups of up to 9 participants were conducted with 29 Wayuu participants (18-68 years; 23 women, 6 men). Using reflexive thematic analysis, three overarching themes were identified: (1) Intersecting sources of appearance pressure: encompassing influences from social media, Wayuu family expectations, and discrimination from non-Indigenous peers; (2) Negotiating and resisting appearance ideals: from body dissatisfaction and restrictive eating to affirmation of cultural identity as protection; and (3) The changing role of appearance in today's Wayuu culture: participants linked globalised appearance ideals to expanding educational opportunities, migration, digital connectivity, and broader socioeconomic transformations occurring within Wayuu territories. While exposure to global ideals fostered comparison and dissatisfaction, cultural pride and collective belonging appeared to buffer against internalised colonial values. Culturally grounded media literacy and education initiatives co-developed with Wayuu communities could foster critical reflection while strengthening heritage. These results highlight the need for decolonial, community-based approaches to body image research and intervention in Indigenous contexts.

Adolescent↗

Perceptions of Pharmacogenomic Testing Among People With Treatment Resistant Depression: Legitimization as a Facilitator of Acceptance.

Pharmacogenomic testing for psychiatric medications has been proposed as both an early intervention to optimize treatment response, and for use among patients who have tried multiple medications without symptom remission. Therefore, this testing may be particularly salient to the subset of individuals with major depressive disorder for whom depression has been labeled as "treatment resistant". Understanding the impact of this diagnostic label on illness identity and attitudes towards new therapies is important as genomic technology expands and rates of depression increase. We sought to explore perceptions and attitudes towards pharmacogenomic testing among individuals who had received a diagnosis of treatment resistant depression. We conducted a qualitative study with a constructivist orientation. Participants were recruited from a larger genomic research study and interviewed by phone or video call. We took an inductive approach to coding guided by reflexive thematic analysis. Themes were then organized into a relational framework following principles of interpretive description. Twelve individuals were interviewed. Key themes included internalized acceptance/hopelessness, and external validation/frustration, which were cyclically interconnected. These themes were situated within a larger framework illustrating the ways that illness identity and modifying factors such as relief of guilt, social support, pharmacogenomic testing and depressive symptoms can either facilitate acceptance and validation or contribute to feelings of hopelessness and frustration. Though participants expressed some skepticism around its effectiveness, pharmacogenomic testing may contribute to the shift towards acceptance and validation by legitimizing individuals' experiences with lack of treatment response. Genetic counselors and other healthcare providers should be aware of the complex balance between hope and frustration underlying conversations around pharmacogenomic testing, and factors that are more likely to foster self-acceptance.

Humans↗

Unacknowledged Burdens and Clinical Assets of BIPOC Genetic Counseling Students: Qualitative Evidence to Inform Supervision.

As the genetic counseling profession works to diversify its predominantly white workforce, understanding the experiences of Black, Indigenous, and People of Color (BIPOC) students is central to equity efforts. While BIPOC students bring invaluable cultural and linguistic diversity that improves patient care, they often navigate clinical training environments that lack diversity and psychological safety. This article draws on data from a longitudinal constructivist qualitative study to examine how racial and ethnic concordance (or lack thereof) with patients and clinical supervisors influenced the clinical training, professional development, and well-being of BIPOC genetic counseling students. Semi-structured interviews were conducted with 25 BIPOC genetic counseling students in the United States and Canada. Interviews were recorded using Zoom.us, transcribed using Rev.com, and analyzed in NVivo using reflexive thematic analysis. The analysis led to the construction of three themes: (1)Shared identity with patients is a clinical advantage: Participants leveraged their cultural and linguistic intuition to establish trust and rapport with patients; (2) Identity navigation involves cognitive and emotional labor: Participants shouldered an unacknowledged burden in managing stereotype threat, overcoming feelings of exclusion, and educating supervisors; and (3) Racial/ethnic identity shapes supervisory dynamics: Participants described BIPOC supervisors as providing identity-affirming support, while some white supervisors avoided discussions about identity or committed microaggressions. These results suggest that BIPOC genetic counseling students have clinical assets rooted in biculturalism, yet carry a burden that often goes unacknowledged of managing power imbalances and pressure to assimilate in predominantly white clinical supervision spaces. To promote equitable training, programs should implement supervisor training on culturally responsive identity broaching, establish independent, transparent mechanisms for students to report biases they encounter in clinic, and expand mentorship networks to provide additional support.

Humans↗

Implementing a novel digital health platform for self-management of postmenopausal osteoporosis: A qualitative study of user experiences, perspectives and implementation outcomes.

BACKGROUND: Osteoporosis self-management requires scalable support, and digital health platforms may meet this need. This study aimed to characterise the experiences and perspectives of postmenopausal women who participated in a 12-month randomised controlled trial (RCT) of a digital voice assistant (DVA) delivered osteoporosis self-management intervention, and to assess key implementation outcomes. METHODS: This was a qualitative analysis of interviews with postmenopausal women from the intervention arm (DVA group) of the RCT. The DVA program broadcast education videos, medication reminders, home-based exercise, nutrition advice and monthly quizzes through a DVA device. Semi-structured interviews were recorded, transcribed and managed in NVivo through reflexive thematic analysis, guided by the Practical Planning for Implementation and Scale-Up and Proctor's implementation outcome taxonomy frameworks. Evidence weighting summarised participant coverage and code density. RESULTS: Twenty-two of 25 (88%) DVA group participants completed semi-structured interviews. Thematic analysis identified seven themes mapped to Proctor's implementation outcomes. Evidence weighting indicated strong support for the intervention's appropriateness and acceptability, moderate support for its adoption, fidelity, feasibility and sustainability, and limited support for costs. Participants valued clear audiovisual guidance, conversation-based interactions with natural language, and flexible home-based access to self-management. CONCLUSION: Digital health platforms for osteoporosis self-management appear feasible, acceptable and sustainable among postmenopausal women. Findings indicate that these platforms are approaching readiness for evaluation in implementation-focused settings, contingent on streamlined content, reliable delivery modalities, accessible user support, clear privacy regulations and pragmatic pricing models.

Humans↗

"Will it be enough to be respected?": understanding personal, institutional, and societal harms and benefits of genomics research.

BACKGROUND: Transgender Identity Genomics Research (TIGR)-research examining potential associations between genetic factors and transgender, nonbinary, and gender diverse (trans) identities-takes place in a complex landscape with significant potential to either benefit or harm trans communities. As public and political scrutiny of trans communities intensifies, the stakes and potential impacts of TIGR are heightened and ethical, legal and social implications must be considered. To better understand how those who would be most affected by TIGR view such research, we explored trans adults' perceptions of TIGR in the current environment and how they perceive TIGR may impact their futures. METHODS: Using a community-based participatory research approach, we partnered with a trans-led Executive Stakeholder Board to conduct in-depth interviews with 31 trans adults in the United States between June-December 2024 and conducted a Reflexive Thematic Analysis. RESULTS: Participants (mean age=34 years, range=19-73 years; 61% people of color; 39% nonbinary, 39% transgender women, 22% transgender men) identified possible benefits of TIGR such as personal affirmation, increased social acceptance, and improved access to gender-affirming healthcare. They also expressed concerns about potential harms, including further stigmatization, discrimination, and pathologization of trans identities. While most viewed research in trans communities (including TIGR) as a net positive, some participants felt it less useful compared to addressing more urgent, material challenges trans communities face. CONCLUSION: Our findings underscore that TIGR, like all scientific research, is shaped by the sociopolitical environment. It is imperative that TIGR researchers engage meaningfully and ethically with trans communities to minimize potential harms and center community needs.

Genetics↗

Making patient-oriented decisions with collegial support as an anchor: Oncologists' experiences of late-line treatment selection in metastatic breast cancer.

BACKGROUND: Treatment guidelines support oncologists in treatment decision-making for patients with metastatic breast cancer (MBC). However, treatment decision-making is complicated by the rapid pace of therapeutic advances, the complexity of incorporating patient preferences, and the underrepresentation of diverse populations in clinical trials. This study explored oncologists' experiences of treatment selection in late-line MBC when evidence and guidelines provide limited guidance. MATERIALS AND METHODS: This qualitative study was conducted using a constructivist approach and involved individual interviews with twelve oncologists in Sweden. Participants had between five and forty years of experience in breast cancer care and worked within publicly funded healthcare across academic and regional hospitals. An inductive reflexive thematic analysis was used to identify themes, with attention to both manifest and latent meanings in the data. RESULTS: The overarching theme interpreted was: Making patient-oriented treatment decisions with collegial support as an anchor, reflecting how oncologists adapt their treatment decision-making to patient needs while relying on colleagues for professional stability. Four themes were elucidated: Offering to use professional knowledge and experience to decide; Inviting the patient to a dialogue to decide; Supporting the patient in making the final decision; and Turning to colleagues for advice and support. CONCLUSION: This study challenges the positivist evidence-based assumption that oncologists act as neutral facilitators who simply present treatment options for patients to choose. Instead, it positions oncologists as active decision-makers who clearly state their professional stance, retain responsibility for treatment decisions, and respect patient autonomy, moving beyond the traditional, dichotomized shared decision-making model. IMPLICATIONS TO PRACTICE: We argue that oncologists are active stakeholders in a value-led decision-making process and encourage them to clearly articulate the values underlying their recommendations. This approach enables patients to be addressed with full autonomy, while the ultimate responsibility for treatment decisions remains with the oncologist.

Humans↗

Power as equal ability, knowledge and resistance: Systematic review of experiences of adults with noncommunicable diseases.

PURPOSE: To analyse subjective experiences of power of adults with noncommunicable diseases in relationships with healthcare practitioners as well as underlying facilitators and barriers of these experiences. METHODS: Systematic review (4 databases) of experiences using reflexive thematic analysis underpinned by critical realist approach. The analysis was conducted with an abductive reasoning using previous theories on social power as well as retroduction. RESULTS: Based on 24 studies, we formed three themes, which depict experiences of power as 1) the position, equal ability and freedom to make one's own choices and (re)negotiate within shared dialogue, 2) the ability to use knowledge to claim one's rights, 3) resistance. Facilitators were connected to acknowledgement as an equally valuable individual, positive healthcare practitioner attitudes and actions towards patient activity and views, safety in the relationship as well as to sufficient, clear and varied information. Main barriers were experiences of dehumanisation, negative healthcare practitioner attitudes and actions, perceived or assumed practitioner domination in interactions, lack of or incomprehensible knowledge and testimonial smothering. CONCLUSION: Results suggest that adults with noncommunicable diseases may experience power primarily as a positive power: being acknowledged as having legitimate position to make decisions and being in possession of varied knowledge through which they can gain agency to protect and claim their rights, by resisting, if necessary. Healthcare practitioners are in key position to support these experiences through positive transforming actions, while knowledge asymmetries, persistent inequality and paternalistic structures continue to hinder it.

Humans↗

"Orphaned bereavement": Toward a public health model for bereavement.

Bereavement is increasingly recognized as a public health concern, yet support systems in many welfare states continue to allocate support according to the circumstances of death rather than the functional needs of bereaved families. Existing bereavement frameworks have substantially advanced understanding of social recognition and public legitimacy but provide more limited guidance for understanding how institutional responsibility for bereaved families is organized. using Israel as a bereavement-saturated case, this study introduces the concept of orphaned bereavement to describe bereavement in which no institution holds clearly defined and continuing responsibility for identifying needs, coordinating support, and ensuring continuity of care. Drawing on 25 semi-structured interviews with five bereaved family members and 20 professionals, analyzed using reflexive thematic analysis, the analysis generated three interrelated themes: institutionalized invisibility and unequal recognition; reorganizing life in the absence of institutional support; and pathways toward a needs-based model of bereavement support. The findings extend existing theories of disenfranchized grief and grievability by introducing institutional responsibility as a complementary lens for understanding bereavement inequality and support a needs-based public health approach in which support is organized according to families' evolving functional needs rather than the circumstances of death.

Journal Article↗

Development and pilot testing of a prostate cancer polygenic risk report.

BACKGROUND: Polygenic risk scores (PRS) are increasingly being incorporated into clinical care, yet optimal strategies for communicating PRS results to patients and clinicians remain undefined. Effective report design is critical to ensure comprehension and appropriate use, particularly for complex conditions such as prostate cancer where screening decisions are nuanced. We developed and pilot tested patient-facing materials to communicate integrated polygenic and monogenic risk for prostate cancer in the context of a randomized clinical trial. METHODS: We designed a summary report and accompanying Frequently Asked Questions (FAQ) page to communicate prostate cancer genetic risk within the Prostate Cancer, Genetic Risk, and Equitable Screening Study (ProGRESS). Materials were developed through an iterative, multidisciplinary process informed by existing literature on genomic risk communication. We conducted semi-structured interviews with a national sample of eight men eligible for prostate cancer screening to evaluate comprehension, interpretation of visual elements, perceived usefulness, and preferences for improvement. Interviews were transcribed and analyzed using reflexive thematic analysis. RESULTS: Participants generally found the summary report and FAQ page understandable and visually engaging. Graphical displays of absolute risk, particularly pictograph arrays, facilitated comprehension and helped contextualize risk. Visual cues such as color and bold formatting effectively directed attention to key information, with red coloring perceived as particularly salient for high-risk results. In contrast, more complex visualizations, including bell curves and incidence curves, were frequently misunderstood or not interpreted as intended. Participants expressed a desire for clearer guidance regarding next steps and additional accessible information, suggesting supplementary resources such as hyperlinks or QR codes. Concerns about readability included small font size and high text density. CONCLUSIONS: In this qualitative pilot study, patient-facing materials for communicating prostate cancer PRS were generally well received, with specific design features such as simple visualizations and clear formatting enhancing understanding. Findings highlight the importance of intuitive risk displays and actionable guidance in PRS reporting. These results provide practical insights to inform the design of genomic risk reports as PRS-based prostate cancer screening approaches move toward clinical implementation. TRIAL REGISTRATION: ClinicalTrials.gov NCT05926102; date of registry: July 3, 2023.

Aged↗

A Preventive Social Media Intervention for Perinatal Depression and Anxiety in Regional, Rural, and Remote Communities: Participatory Co-Design Study.

BACKGROUND: Perinatal depression and anxiety are significant public health concerns, affecting up to 1 in 5 women globally, with disproportionate burden carried by women in regional, rural, and remote communities where structural and social inequities amplify vulnerability. Access to perinatal mental health support in these settings is severely constrained by geographical isolation, workforce shortages, financial barriers, and a lack of culturally safe services. Prevention is recognized as critical to reducing this burden, with evidence suggesting that effective preventive approaches can reduce population-level illness by up to 40% and alleviate downstream demand on overstretched services. Digital mental health interventions hold promise for improving access to support, yet few are co-designed with underserved perinatal populations. OBJECTIVE: This study aimed to identify the mental health needs of perinatal women in regional, rural, and remote communities and to co-design a framework for a preventive social media-based intervention informed by platform-specific affordances and constraints, using Northern Queensland, Australia, as an exemplar. METHODS: Using a participatory co-design approach, 26 perinatal women (21 postnatal and 5 antenatal) and 8 mental health care professionals from regional, rural, and remote Northern Queensland participated in focus groups or interviews, supplemented by ongoing consultation with a community advisory group comprising lived experience representatives, clinicians, and local community leaders. Qualitative data were analyzed using reflexive thematic analysis to identify core community mental health needs. Identified needs were then examined through a needs-affordances framework to determine how specific platform features could address, enable, or constrain those needs in the context of a preventive intervention. RESULTS: Five core mental health needs were identified: (1) social connection and support; (2) personalized and respectful health care; (3) information that empowers; (4) place-based and culturally safe support; and (5) accessible, low-burden digital formats. Participants viewed social media as a potentially useful platform for fostering peer connection, normalizing perinatal experiences, and providing timely psychoeducation. However, both mothers and professionals expressed concerns about misinformation, harmful social comparison, and privacy risks that must be proactively addressed in program design. These insights were synthesized into a set of prototype design guidelines specifying recommended content, features, tone, and delivery formats to inform subsequent intervention development. CONCLUSIONS: This study provides a place-based, co-designed needs-affordances framework to guide the development of a preventive social media-based intervention for perinatal mental health support in regional, rural, and remote communities. The findings demonstrate that social media is an acceptable and promising platform for preventive perinatal mental health support in these settings, provided that design is driven by community need, platform affordances are systematically analyzed, and known risks are explicitly mitigated. These findings address a significant gap in the literature and offer a replicable methodological approach for co-designing contextually relevant digital mental health interventions with underserved populations.

Humans↗

(Re)imagining the Future of Genetic Counseling: A Reflexive Qualitative Analysis of Sociopolitical Power, Cultural Safety, Systemic Racism, and Comparative Practice in the United Kingdom, Aotearoa New Zealand and, Australia.

Genetic counseling is undergoing a rapid transformation as genomic medicine becomes embedded within mainstream healthcare systems. At the same time, the profession is being challenged to respond to systemic racism, colonial legacies, technological change, and evolving expectations regarding equity and justice. Historically, genetic counseling emerged within twentieth-century medical genetics and was influenced by political, social, scientific, and medical forces that included eugenic ideology, values, and practices. The profession has since evolved substantially toward psychosocial, patient-centered, and non-directive models of care. Contemporary debates regarding "newgenics" or "neugenics" further demonstrate how concerns regarding equity, reproductive ethics, disability, and genomic stratification continue to shape genomic healthcare discourse. This qualitative reflexive practice paper explores how systemic racism, colonial legacy, cultural safety and structural power shape genetic counseling practice in the United Kingdom (UK), Aotearoa New Zealand and Australia, and how these forces continue to reshape the profession's future identity. A reflexive, narrative, and comparative qualitative approach was employed, grounded in the authors' lived professional experiences across UK and Australasian contexts and informed by purposively selected policy, professional and scholarly literature relating to cultural safety, dignity, anti-racism, and Human Rights-Based Decision-Making. Through iterative reflexive dialogue, comparative analysis, and thematic synthesis, four interrelated themes were developed examining sociopolitical context, systemic racism, cultural safety and technologization within contemporary genetic counseling practice. Comparative analysis identified substantial differences in how culturally responsive practice is conceptualized and operationalized across settings. In Aotearoa, cultural safety is strongly shaped by Te Tiriti o Waitangi, bicultural accountability, and Māori sovereignty frameworks. In Australia, culturally safer genomic care has increasingly developed through Indigenous-led initiatives and workforce reform, including the Australian Alliance for Indigenous Genomics (ALIGN). In contrast, UK practice remains largely situated within equality, diversity, and inclusion (EDI) frameworks that may insufficiently address systemic racism and structural power within increasingly diverse populations. Reflexive clinical examples demonstrated how inequities may emerge through undocumented patient values, standardized pathways, assumptions regarding autonomy, and misinterpretation of culturally specific communication styles. Re-imagining the future of genetic counseling requires more than just technological advancement. It requires reflexive engagement with dignity, inequity, and the sociopolitical realities of the populations served. These insights re-imagine a culturally grounded, socially responsive future for genetic counseling in an era shaped by genomic mainstreaming, digital transformation, artificial intelligence and workforce reform and one in which the profession remains ethically anchored, relationally attuned, and committed to justice-oriented practice.

Humans↗