Vlas Nikulkin, Catharina Margaretha van Leersum, Alexander Peine
{"title":"Key users and the creation of everyday relations with digital technologies in care","authors":"Vlas Nikulkin, Catharina Margaretha van Leersum, Alexander Peine","doi":"10.1016/j.ssmqr.2025.100547","DOIUrl":"10.1016/j.ssmqr.2025.100547","url":null,"abstract":"<div><div><em>The introduction of new technologies in care is not a smooth process, bringing new challenges, the need to adapt, and changes in work routines and carer–care receiver relationships. These changes, coming from an emerging new regime of digitalised care, are often met with reluctance and suspicion both by carers and care receivers. This results in slowing down the process, and, at times, the complete jeopardy of top-down organisational efforts to introduce new technologies. This study presents a case of Dutch carers providing care to older adults, who voluntarily</em> support <em>the introduction and use of digital technologies implemented by their organisations from above.</em> We applied qualitative research methods, and present findings based on 11 semi-structured interviews with professional care providers regarding<em>supportive work examples, such as external information absorption, sharing information and learning about the use of digital tools with colleagues, proactive engagement in resolving emerging frictions, and adjusting new technologies to specific care provision needs. Theoretically, our study builds on the relational approach to the care, which focuses on everyday practices and relations co-producing interdependence of carers, care receivers, and their socio-material worlds. We argue that the work by key user carers is a crucial driver for the successful adoption of new digital technologies in care practice.</em></div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100547"},"PeriodicalIF":1.8,"publicationDate":"2025-03-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143726202","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Arwen Bunce , Suzanne Morrissey , Rachel Gold , Jenna Donovan , Maura Pisciotta , India Gill , Shelby L. Watkins , Brenda McGrath , Laura M. Gottlieb
{"title":"“The start of something that I hope could be greater”: Health information technology tools for social care","authors":"Arwen Bunce , Suzanne Morrissey , Rachel Gold , Jenna Donovan , Maura Pisciotta , India Gill , Shelby L. Watkins , Brenda McGrath , Laura M. Gottlieb","doi":"10.1016/j.ssmqr.2025.100544","DOIUrl":"10.1016/j.ssmqr.2025.100544","url":null,"abstract":"<div><div>Federal policies and professional guidelines in the United States increasingly encourage and incentivize health systems to collect and meaningfully respond to patients’ social risks. In response, many health systems employ health information technology to implement, standardize, and scale these social care activities. We created and evaluated electronic health record tools to support the collection and documentation of social risk information, and the integration of this information into clinical decision-making; the <span>National Academies of Sciences, Engineering, and Medicine</span> labels these activities Awareness and Adjustment. Our realist-informed evaluation explored how, why, and for whom the tools did/did not support the use of social risk information in care planning in community health centers. The five-year study was completed in 2024. The dataset consisted of 41 meeting observations, 36 clinician and staff interviews, and regular team discussions regarding tool use at participating clinics. Analysis involved cyclical data querying to identify mechanisms underlying tool (non)acceptance and (non)use. Findings highlighted the importance of aligning technology to the values underlying professional identity – in this case, the value assigned to patient-centered care. Clinicians and staff perceived that Awareness tools enhanced their ability to provide patient-centered care, which led to increased uptake. In contrast, participants often felt that the Adjustment tools superseded clinician autonomy, failed to support direct patient care, and disrupted patient-clinician relationships contributing to low motivation for use. These results may be specific to the ways in which clinicians serving low-income communities conceptualize their role in social-medical integration; similar work should be undertaken in other healthcare settings.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100544"},"PeriodicalIF":1.8,"publicationDate":"2025-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143654505","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Noor Ahmed , Ahmed B. Hamed , Jessica G. Bruce , Megan Hamm , Alicia Dawdani , Vidya Kuniyil , Deborah Mattila , Eric P. Williams , Mary Amanda Dew , Larissa Myaskovsky , Dennis L. Confer , Galen E. Switzer
{"title":"Donation-related decision-making among young adult Black and Hispanic members of a hematopoietic stem cell donor registry: A qualitative study","authors":"Noor Ahmed , Ahmed B. Hamed , Jessica G. Bruce , Megan Hamm , Alicia Dawdani , Vidya Kuniyil , Deborah Mattila , Eric P. Williams , Mary Amanda Dew , Larissa Myaskovsky , Dennis L. Confer , Galen E. Switzer","doi":"10.1016/j.ssmqr.2025.100545","DOIUrl":"10.1016/j.ssmqr.2025.100545","url":null,"abstract":"","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100545"},"PeriodicalIF":1.8,"publicationDate":"2025-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143654504","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Intimate partners’ participation in risk-management decision making by women at elevated risk of breast cancer: An exploratory qualitative study","authors":"Anna Muraveva , Megan Hils , Tasleem J. Padamsee","doi":"10.1016/j.ssmqr.2025.100543","DOIUrl":"10.1016/j.ssmqr.2025.100543","url":null,"abstract":"<div><div>Women at high risk of breast cancer (BC) can face difficult decisions about their risk-management options. For partnered women, a significant other is often the closest emotional relationship and can thus be particularly influential in risk-management decision making. Using data from semi-structured interviews with 30 women in the United States who are at elevated BC risk and in long-term relationships with male partners, we aimed to understand the communication and support-related dynamics of women and their partners. Inductive analysis guided by a constructivist grounded theory approach yielded five main themes. Our results suggest that relationships may add considerable complexity to risk-related decision making. Open communication may be difficult and can be delayed for several reasons: lack of urgency on the part of the woman, reluctance on the part of the partner, or avoidance of uncomfortable topics. Intimate partners often did not fill women's need for emotional support, and some women received support only after difficult conversations or communication assistance from a healthcare provider. Supplemental analysis of women's stories after completion of this inductive work allowed us to posit four approximately sequential levels of partners' involvement in risk-management decision making and action. It was more common for male partners to have no, low, or moderate involvement in risk management, and rarer for men to have a high level of involvement.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100543"},"PeriodicalIF":1.8,"publicationDate":"2025-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143684032","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Nicolas Khatmi, Perrine Roux, Bruno Spire, Christel Protière
{"title":"The sociodynamics of chemsex: Stakeholders’ perspectives in France - Results from the ANRS-PaacX study","authors":"Nicolas Khatmi, Perrine Roux, Bruno Spire, Christel Protière","doi":"10.1016/j.ssmqr.2025.100542","DOIUrl":"10.1016/j.ssmqr.2025.100542","url":null,"abstract":"<div><div>This study examined the intricate phenomenon of chemsex among men who have sex with men (MSM) in France, by focusing on the perspectives of different stakeholders, namely people with chemsex experience, clinicians, and community health workers. Employing a sociodynamic approach, lexical analysis was used to identify and interpret key themes in participants’ discourses on chemsex, with a view to revealing its multifaceted nature.</div><div>Our findings highlight how the social representations of chemsex are profoundly influenced by the institutional separation of sexual healthcare services from services managing the consumption of psychoactive substances. This division not only shapes how individuals perceive and manage their behaviors and health needs but also introduces systemic challenges to adequately addressing the health issues of MSM engaged in chemsex. Moreover, this division leads to structural obstacles for clinicians and community health workers providing care.</div><div>This comprehensive analysis deepens our understanding of the complex mechanisms underlying chemsex and offers essential insights for crafting informed and effective public health interventions. Furthermore, our study results underscore the critical need for community involvement in strategies focused on addressing the unique health and social challenges posed by chemsex. Moreover, our findings advocate integrated approaches that align with the specific needs and experiences of concerned stakeholders.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100542"},"PeriodicalIF":1.8,"publicationDate":"2025-03-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143631795","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Matrones as accompagnateurs: A model for accompaniment","authors":"Meredith Casella Jean-Baptiste , Milenka Jean-Baptiste , Pierre Ricard Pognon , Alison Lutz , Joia Mukherjee , Christophe Millien","doi":"10.1016/j.ssmqr.2025.100541","DOIUrl":"10.1016/j.ssmqr.2025.100541","url":null,"abstract":"<div><div>Accompaniment is an approach for working with, supporting, and providing needed services to historically marginalized or vulnerable groups. It involves multiple stakeholders going through an experience together in solidarity to achieve a shared goal, ensuring that the vulnerable do not bear the load alone. Despite this, there has been limited research describing accompaniment. Per the existing literature, no study has explored the traditional birth attendant (known as a matrone in Haiti) as an accompagnateur. This paper explores accompaniment as an approach, harnessing the wisdom, connections, and love of matrones serving pregnant women as they labor and give birth. In doing so, this work further operationalizes accompaniment through a conceptual model that describes its various components. Matrones serving pregnant women in the Mirebalais commune of Haiti were purposively and conveniently sampled to participate in focus group discussions. Using thematic analysis, multiple themes emerged. Four themes represent the core components of the accompaniment model: physical support, economic support, emotional support, and advocacy. Four themes represent values that undergird accompaniment: spirituality, compassion, commitment, and conviction. The final theme is the applied, practical aspect of accompaniment: pragmatic solidarity. The layers of the accompaniment model, positions accompaniment as a rubric for programmatic design (core components), philosophical stance (undergirding values), and practice (pragmatic solidarity).</div><div>We believe these findings demonstrate an accompaniment model that is practical, moral, value-driven, and can be adapted for use in various programmatic settings. This model can be taught and would support better health outcomes for pregnant women from historically, socially or economically vulnerable groups.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100541"},"PeriodicalIF":1.8,"publicationDate":"2025-02-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143511730","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Anticipatory moral distress in machine learning-based clinical decision support tool development: A qualitative analysis","authors":"Clare Whitney , Heidi Preis , Alessa Ramos Vargas","doi":"10.1016/j.ssmqr.2025.100540","DOIUrl":"10.1016/j.ssmqr.2025.100540","url":null,"abstract":"<div><div>Ongoing interest in machine learning systems include the emerging capability to integrate electronic health records to develop clinical decision support (CDS) tools that improve medical care, diagnostics, and therapy. Such CDS tools, which can handle a large quantity of data sources, can advise clinicians and amplify insights on diverse patient risk factors, from physiological challenges to psychosocial vulnerabilities. Despite a growing interest, there are various challenges that hinder the successful use of CDS tools in clinical practice. Among these, a key challenge is hesitance or resistance among end-users to take up tools and integrate their use into practice. The current inquiry applied a framework of the symbolic interaction of participatory experience-based co-design and used an interpretive descriptive approach to analysis of qualitative data, investigating the ethical issues brought to light by clinicians participating in three participatory experience-based co-design focus groups, as a part of the initial development of a CDS tool for detecting risk factors for adverse health outcomes in outpatient obstetric care at a single academically affiliated medical institution. Findings revealed that participants describe their anticipated symbolic relationship with a ML-based CDS tool as either promising or morally distressing. Anticipatory moral distress includes three separate sub-categories: 1) <em>clinical conflict</em> with clinical assessment and judgment, 2) <em>partial conflict</em> with comprehensive clinical considerations, and 3) <em>resource conflict</em> with structural barriers related to care delivery. Future work should include utilizing participatory experience-based co-design with end users to identify relevant context and institution-specific priorities and concerns from the beginning of CDS tool development and to continue co-design throughout the development process.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100540"},"PeriodicalIF":1.8,"publicationDate":"2025-02-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143455016","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Noelene K. Jeffers , Lauren A. Arrington , Ebony Marcelle , Erin C. Snowden , Lauren M. Aslami , Caitlin N. Mensah , Christina X. Marea
{"title":"“This year is not about carrying the heaviest burden”- a qualitative study on Black women’s postpartum experiences","authors":"Noelene K. Jeffers , Lauren A. Arrington , Ebony Marcelle , Erin C. Snowden , Lauren M. Aslami , Caitlin N. Mensah , Christina X. Marea","doi":"10.1016/j.ssmqr.2025.100536","DOIUrl":"10.1016/j.ssmqr.2025.100536","url":null,"abstract":"<div><div>There is a growing literature that seeks to understand Black women/birthing people’s postpartum experiences, particularly in the context of structural, political and historical exclusion of Black people in the United States. The overarching goals of this manuscript were to explore Black women’s postpartum experiences, how racism impacts the postpartum year, and for those insights to reimagine a model of postpartum care that enables Black birthing people to achieve that vision of wellness. We conducted four focus groups with 23 self-identified Black women in the Washington DC metropolitan area who had given birth in the prior two years. Participants attributed the intense overwhelm that characterizes the postpartum period to the historical legacy of slavery, the Jim Crow era, and the enduring “strong Black woman” racial trope. Most participants reported receiving only one postpartum care visit amidst unmet care needs. Structural barriers like transportation, minimal paid leave, and crowded and racially segregated healthcare systems contributed to feelings that postpartum care and wellness were inaccessible. Racist encounters with healthcare providers and fears of family policing sometimes led to care avoidance as a means of mitigating harm while simultaneously motivating attempts to seek racially and culturally concordant care. Participants also shared the ways in which they resisted racism while also rejoicing in mothering and child(ren). Our findings demonstrate an urgent need to reimagine postpartum care to address the enduring impact of the historical context, the manifestations of racism, and the structural ways that postpartum is neglected, while also promoting wellness and joy.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100536"},"PeriodicalIF":1.8,"publicationDate":"2025-02-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143509192","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Isabella M. Radhuber , Katharina Kieslich , Katharina T. Paul , Gertrude Saxinger , Sebastian Ferstl , David Kraus , Stephen Roberts , Natália Varabyeu Kancelová , Barbara Prainsack
{"title":"Why ‘inclusive policymaking’ is needed during crises: COVID-19 and social divisions in Austria","authors":"Isabella M. Radhuber , Katharina Kieslich , Katharina T. Paul , Gertrude Saxinger , Sebastian Ferstl , David Kraus , Stephen Roberts , Natália Varabyeu Kancelová , Barbara Prainsack","doi":"10.1016/j.ssmqr.2025.100539","DOIUrl":"10.1016/j.ssmqr.2025.100539","url":null,"abstract":"<div><div>During the COVID-19 pandemic, calls for unity from politicians and public health experts contrasted sharply with the rising social divisions between vaccinated and unvaccinated people. Through 127 in-depth qualitative interviews conducted at two time points (October 2020 [n = 72], October 2021 [n = 55]) in Austria, a country with high vaccine hesitancy, this paper explores how and why deepening social divisions around vaccination occurred. Our findings emphasise the political determinants of health shaping these divisions at key moments of the pandemic. Respondents pointed to: 1) the divisive nature of public health policymaking during the vaccine rollout, and 2) how this created fertile ground for right-wing populist parties to exploit social divisions for their own gain. We argue that inclusive (i.e., non-divisive) policymaking is essential during crises to enhance public health interventions —and to address and prepare for ongoing and future global crises like disease outbreaks and the climate emergency.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100539"},"PeriodicalIF":1.8,"publicationDate":"2025-02-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143534516","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Anne Marit Mengshoel , Merja Sallinen , Julius Sim , Birgitte Ahlsen
{"title":"Exercising an individualized process of agency in restoring a self and repairing a daily life disrupted by fibromyalgia: A narrative analysis","authors":"Anne Marit Mengshoel , Merja Sallinen , Julius Sim , Birgitte Ahlsen","doi":"10.1016/j.ssmqr.2025.100538","DOIUrl":"10.1016/j.ssmqr.2025.100538","url":null,"abstract":"<div><h3>Objective</h3><div>Fibromyalgia is a chronic condition that has major impact on people's lives. This study examines individuals' illness trajectories, with a particular focus on daily life experiences and self-managing.</div></div><div><h3>Methods</h3><div>Narrative interviews were conducted, asking participants to story their daily life experiences from illness onset to the present, and to reflect on the future. Embedded in their storying were experiences of recently being diagnosed, navigating daily life in the face of illness, and participating in a self-management intervention. The data underwent a narrative analysis.</div></div><div><h3>Results</h3><div>In keeping with the idiographic focus of narrative research, two individuals' stories were chosen to portray an individualized process of self-managing illness in daily life. The storylines ‘Resuming prior self and life’ and ‘Taking life and self in new direction’ illuminate how individuals with differing illness trajectories and life situations autonomously apply resources available to them in their lives. They make sense of illness by bringing together their own lifeworld experiences of stress and factual knowledge and, through a process of individual agency, discover and try out what is right to do in their own life in the face of chronic illness.</div></div><div><h3>Conclusions</h3><div>These two storylines illustrate that a self-managing process is an individual process nested in the person's social context. Self-management encompasses an individualized process of agency in remaking daily life and reconstructing a sense of self.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100538"},"PeriodicalIF":1.8,"publicationDate":"2025-02-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143387450","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}