Pub Date : 2025-01-22DOI: 10.1016/j.ssmqr.2025.100531
McGladrey Margaret L , Marisa Booty , Ramona Olvera , Peter Balvanz , Hilary L. Surratt , Shannon Matthews , Susannah Stitzer , Owusua Yamoah , Sylvia Ellison , Kevin Campbell , Amy Farmer , Bethany Gealy , Mike Greenwell , Felicia Harris , Amy Kuntz , Sara Szelagowski , Alexandrea Shouse , Carrie B. Oser
(197 words)The ideals of community-engaged health research are challenging to realize ethically and methodologically, particularly when focused on substance use disorder (SUD), in which the power differentials inherent to stigma marginalize people with lived experience (LE) as full community participants. This study provides a typology and exploratory data generated through Photovoice to understand relationships among community members with different roles related to LE of SUD (i.e., SUD service providers, service users, and the public) in the context of a large-scale community-engaged opioid overdose reduction intervention. A team of 14 participants and researchers used an adapted thematic analysis method to interpret Photovoice data from 65 total participants in Kentucky, Massachusetts, and Ohio. Photovoice data indicated the influence of stigmatization on perceptions of service users as problems to be solved by service providers without the significant investment of the rest of the community. Service provider burnout is exacerbated by competition for scarce public investments in addressing the dire need for SUD services amid the opioid epidemic. Community-engaged SUD research can be improved by defining the parameters of communities in explicit, participatory, and reflexive ways and recognizing how disinvestment and stigmatization influence relationships among community members occupying different roles in SUD services.
{"title":"Using photovoice to define “community” in substance use disorder research engaging service users, providers, and policymakers","authors":"McGladrey Margaret L , Marisa Booty , Ramona Olvera , Peter Balvanz , Hilary L. Surratt , Shannon Matthews , Susannah Stitzer , Owusua Yamoah , Sylvia Ellison , Kevin Campbell , Amy Farmer , Bethany Gealy , Mike Greenwell , Felicia Harris , Amy Kuntz , Sara Szelagowski , Alexandrea Shouse , Carrie B. Oser","doi":"10.1016/j.ssmqr.2025.100531","DOIUrl":"10.1016/j.ssmqr.2025.100531","url":null,"abstract":"<div><div>(197 words)The ideals of community-engaged health research are challenging to realize ethically and methodologically, particularly when focused on substance use disorder (SUD), in which the power differentials inherent to stigma marginalize people with lived experience (LE) as full community participants. This study provides a typology and exploratory data generated through Photovoice to understand relationships among community members with different roles related to LE of SUD (i.e., SUD service providers, service users, and the public) in the context of a large-scale community-engaged opioid overdose reduction intervention. A team of 14 participants and researchers used an adapted thematic analysis method to interpret Photovoice data from 65 total participants in Kentucky, Massachusetts, and Ohio. Photovoice data indicated the influence of stigmatization on perceptions of service users as problems to be solved by service providers without the significant investment of the rest of the community. Service provider burnout is exacerbated by competition for scarce public investments in addressing the dire need for SUD services amid the opioid epidemic. Community-engaged SUD research can be improved by defining the parameters of communities in explicit, participatory, and reflexive ways and recognizing how disinvestment and stigmatization influence relationships among community members occupying different roles in SUD services.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100531"},"PeriodicalIF":1.8,"publicationDate":"2025-01-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143174585","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}
Pub Date : 2025-01-21DOI: 10.1016/j.ssmqr.2025.100532
Alicia VandeVusse, Jennifer Mueller, Octavia Mulhern, Sidney Cech
Access to contraception is an essential component of reproductive autonomy. Abortion restrictions such as those introduced in some states following the Supreme Court's Dobbs decision have spillover effects on broader sexual and reproductive health service provision, such as contraceptive services. We conducted 36 in-depth interviews with key staff at publicly supported clinics providing contraceptive services in the United States, examining their experiences of changes in the delivery of family planning services in states where abortion policies are severely restrictive and states where they are less restrictive or protective. We found that publicly supported family planning clinics have experienced some limited impacts on contraceptive care and contraceptive demand due to the Dobbs decision and resultant abortion bans. Clinics in both restrictive and less restrictive/protective states report continuing to provide high-quality contraceptive care post-Dobbs, but they have also changed certain contraceptive counseling practices, grappled with changes in contraceptive demand, and taken steps to adjust their clinic workflows to mitigate the effects of Dobbs. Abortion restrictions impact the provision of contraceptive services. More research is needed to continue to document the spillover effects of abortion restrictions, along with the impact of restrictions on the quality of contraceptive care.
{"title":"Contraceptive care post-Dobbs: A qualitative study of clinic staff perspectives","authors":"Alicia VandeVusse, Jennifer Mueller, Octavia Mulhern, Sidney Cech","doi":"10.1016/j.ssmqr.2025.100532","DOIUrl":"10.1016/j.ssmqr.2025.100532","url":null,"abstract":"<div><div>Access to contraception is an essential component of reproductive autonomy. Abortion restrictions such as those introduced in some states following the Supreme Court's <em>Dobbs</em> decision have spillover effects on broader sexual and reproductive health service provision, such as contraceptive services. We conducted 36 in-depth interviews with key staff at publicly supported clinics providing contraceptive services in the United States, examining their experiences of changes in the delivery of family planning services in states where abortion policies are severely restrictive and states where they are less restrictive or protective. We found that publicly supported family planning clinics have experienced some limited impacts on contraceptive care and contraceptive demand due to the <em>Dobbs</em> decision and resultant abortion bans. Clinics in both restrictive and less restrictive/protective states report continuing to provide high-quality contraceptive care post-<em>Dobbs</em>, but they have also changed certain contraceptive counseling practices, grappled with changes in contraceptive demand, and taken steps to adjust their clinic workflows to mitigate the effects of <em>Dobbs</em>. Abortion restrictions impact the provision of contraceptive services. More research is needed to continue to document the spillover effects of abortion restrictions, along with the impact of restrictions on the quality of contraceptive care.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100532"},"PeriodicalIF":1.8,"publicationDate":"2025-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143174108","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}
To qualitatively assess the experiences that English and Spanish-speaking patients with Medicaid managed care encounter when scheduling a first-time primary care appointment, with a preference for telehealth, in the Los Angeles (LA), Houston and New York (NY) Metropolitan Statistical Areas (MSAs).
Methods
A list of primary care offices was created by scraping online directories from each managed care organization (MCOs) health plan operating in the three MSAs. Primary care offices were randomly selected to participate in this qualitative mystery shopper study. Two researchers listened and transcribed real-time calls between the mystery shopper patients and the receptionists at the primary care offices. Data collection occurred between April 8, 2024, and April 26, 2024, on different days and times of the week. Both researchers completed tests to calculate the Kappa statistic, which indicated substantial inter-rater agreement. The researchers then inductively coded the transcripts using thematic analysis on Dedoose version 9.2.012.
Results
Our study suggests that Spanish-speaking patients who call to schedule a first-time primary care appointment are more likely to experience call transfers, be told to call back later, and encounter more telephone hang-ups, compared to English-speaking patients. Telehealth for first-time appointments is uncommon and typically available only under special circumstances, including COVID-19, medication refills, test result reviews, and for chronically ill populations.
Conclusion
This study shows disparities in access to care between English and Spanish-speaking patients at the time of scheduling a first-time appointment, highlighting an important point for future intervention.
{"title":"A qualitative mystery shopper study that de(codes) the experiences of English and Spanish-speaking patients who call to schedule a first-time primary care appointment in the Los Angeles, Houston, and New York Metropolitan Statistical Areas","authors":"Esmeralda Melgoza , Ahmad Ismail , Lucía Félix-Beltrán , Rosario Majano , Arturo Vargas Bustamante","doi":"10.1016/j.ssmqr.2025.100525","DOIUrl":"10.1016/j.ssmqr.2025.100525","url":null,"abstract":"<div><h3>Objective</h3><div>To qualitatively assess the experiences that English and Spanish-speaking patients with Medicaid managed care encounter when scheduling a first-time primary care appointment, with a preference for telehealth, in the Los Angeles (LA), Houston and New York (NY) Metropolitan Statistical Areas (MSAs).</div></div><div><h3>Methods</h3><div>A list of primary care offices was created by scraping online directories from each managed care organization (MCOs) health plan operating in the three MSAs. Primary care offices were randomly selected to participate in this qualitative mystery shopper study. Two researchers listened and transcribed real-time calls between the mystery shopper patients and the receptionists at the primary care offices. Data collection occurred between April 8, 2024, and April 26, 2024, on different days and times of the week. Both researchers completed tests to calculate the Kappa statistic, which indicated substantial inter-rater agreement. The researchers then inductively coded the transcripts using thematic analysis on Dedoose version 9.2.012.</div></div><div><h3>Results</h3><div>Our study suggests that Spanish-speaking patients who call to schedule a first-time primary care appointment are more likely to experience call transfers, be told to call back later, and encounter more telephone hang-ups, compared to English-speaking patients. Telehealth for first-time appointments is uncommon and typically available only under special circumstances, including COVID-19, medication refills, test result reviews, and for chronically ill populations.</div></div><div><h3>Conclusion</h3><div>This study shows disparities in access to care between English and Spanish-speaking patients at the time of scheduling a first-time appointment, highlighting an important point for future intervention.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100525"},"PeriodicalIF":1.8,"publicationDate":"2025-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143174584","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}
Pub Date : 2025-01-13DOI: 10.1016/j.ssmqr.2025.100524
Karen A. Dominguez-Cancino , Rose Chabot , Yolaine Frossard de Saugy , Kristelle Alunni-Menichini , Lysiane Robidoux-Léonard , Genève Guilbert-Gauthier , Karine Bertrand , Christophe Huỳnh , Pablo Martínez , Helen-Maria Vasiliadis , Nadia L'Espérance , Victoria Massamba , Julie Loslier , José Ignacio Nazif-Munoz
Background
The rising prevalence of prenatal cannabis use in high-income countries presents a growing concern for the medical community. Despite guidelines outlining risks, healthcare and social service professionals often struggle to discuss cannabis use with pregnant women. This study examines how these interactions have evolved following the Cannabis Act in Québec, focusing on how professionals respond to and provide guidance for women who report cannabis use during pregnancy.
Methods
This is a qualitative study using semi-structured interviews. Purposeful sampling was employed to recruit 19 professionals, including physicians, nurses, psychologists, and social workers. Data was analyzed using King's (2012) Template analysis technique.
Results
We identified three themes: a) how professionals talk about cannabis, b) what they talk about, and c) what practices they follow. Two key processes—i) exploration and assessment, and ii) action—were identified. Professionals tailor interventions, including counseling, psycho-emotional management, harm reduction, and referrals, based on risk levels and willingness to change. We observed differences among professionals based on the programs in which they work.
Conclusions
This study highlights the complex interactions between health professionals and pregnant women who use cannabis. It discusses the importance of integrating harm reduction strategies with person-centered approaches to address cannabis use. While professionals balance the need for openness with concerns about fetal health, a knowledge gap persists. Strengthening educational initiatives and expanding addiction expertise could enhance support and intervention practices, bridging gaps left by current evidence and regulatory frameworks.
{"title":"Talking with pregnant women exposed to cannabis use after cannabis legalization: Experiences of professionals working in Québec's social and healthcare system","authors":"Karen A. Dominguez-Cancino , Rose Chabot , Yolaine Frossard de Saugy , Kristelle Alunni-Menichini , Lysiane Robidoux-Léonard , Genève Guilbert-Gauthier , Karine Bertrand , Christophe Huỳnh , Pablo Martínez , Helen-Maria Vasiliadis , Nadia L'Espérance , Victoria Massamba , Julie Loslier , José Ignacio Nazif-Munoz","doi":"10.1016/j.ssmqr.2025.100524","DOIUrl":"10.1016/j.ssmqr.2025.100524","url":null,"abstract":"<div><h3>Background</h3><div>The rising prevalence of prenatal cannabis use in high-income countries presents a growing concern for the medical community. Despite guidelines outlining risks, healthcare and social service professionals often struggle to discuss cannabis use with pregnant women. This study examines how these interactions have evolved following the Cannabis Act in Québec, focusing on how professionals respond to and provide guidance for women who report cannabis use during pregnancy.</div></div><div><h3>Methods</h3><div>This is a qualitative study using semi-structured interviews. Purposeful sampling was employed to recruit 19 professionals, including physicians, nurses, psychologists, and social workers. Data was analyzed using King's (2012) Template analysis technique.</div></div><div><h3>Results</h3><div>We identified three themes: a) how professionals talk about cannabis, b) what they talk about, and c) what practices they follow. Two key processes—i) exploration and assessment, and ii) action—were identified. Professionals tailor interventions, including counseling, psycho-emotional management, harm reduction, and referrals, based on risk levels and willingness to change. We observed differences among professionals based on the programs in which they work.</div></div><div><h3>Conclusions</h3><div>This study highlights the complex interactions between health professionals and pregnant women who use cannabis. It discusses the importance of integrating harm reduction strategies with person-centered approaches to address cannabis use. While professionals balance the need for openness with concerns about fetal health, a knowledge gap persists. Strengthening educational initiatives and expanding addiction expertise could enhance support and intervention practices, bridging gaps left by current evidence and regulatory frameworks.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100524"},"PeriodicalIF":1.8,"publicationDate":"2025-01-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143174583","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}
Pub Date : 2025-01-12DOI: 10.1016/j.ssmqr.2025.100529
Srishti Hukku , Lisa L. Wynn , Angel M. Foster
Recent advancements in artificial womb technology (AWT) – extrauterine gestation – have led to significant bioethical debates on the future of access to abortion. Anthropologists have leveraged concepts of stratified reproduction and reproductive governance to shed light on how different individuals are encouraged/discouraged to reproduce and how key actors such as the state mobilize the capacity for reproduction. As such, we aimed to explore the perspectives of Canadian citizens on the provision of abortion services if AWT were to become a reality. From September 2020 to February 2021, we conducted a qualitative bilingual community-based survey with 343 Canadian citizens and 41 semi-structured in-depth interviews with a subset of survey respondents in English and French. We analyzed the survey data using descriptive statistics and the interviews for content and themes using inductive and deductive techniques. Our study found that when assessing the potentiality of AWT, participants centered reproductive choice, bodily autonomy, and family planning in decision-making. Participants further expressed that any efforts at governance of AWT should ensure that the technology complements, rather than curtails, existing methods of reproduction and assisted reproduction, and enhances choice for those desiring parenthood. For our participants, AWT was seen as a medical device that had the potential to improve lives while ensuring that abortion-seekers’ rights to control their bodies and reproduction were not impeded. Our study demonstrates that the current ban against the development and use of AWT is a form of gestational stratification that privileges those with access to a uterus for gestation which limits reproductive choice. Policymakers and legislators should consider these perspectives when developing policies and regulations at the intersection of abortion and new assisted human reproduction technologies.
{"title":"“If somebody wants an abortion, nobody should override their decision”: Modern Canadian perspectives on abortion in relation to artificial womb technology","authors":"Srishti Hukku , Lisa L. Wynn , Angel M. Foster","doi":"10.1016/j.ssmqr.2025.100529","DOIUrl":"10.1016/j.ssmqr.2025.100529","url":null,"abstract":"<div><div>Recent advancements in artificial womb technology (AWT) – extrauterine gestation – have led to significant bioethical debates on the future of access to abortion. Anthropologists have leveraged concepts of stratified reproduction and reproductive governance to shed light on how different individuals are encouraged/discouraged to reproduce and how key actors such as the state mobilize the capacity for reproduction. As such, we aimed to explore the perspectives of Canadian citizens on the provision of abortion services if AWT were to become a reality. From September 2020 to February 2021, we conducted a qualitative bilingual community-based survey with 343 Canadian citizens and 41 semi-structured in-depth interviews with a subset of survey respondents in English and French. We analyzed the survey data using descriptive statistics and the interviews for content and themes using inductive and deductive techniques. Our study found that when assessing the potentiality of AWT, participants centered reproductive choice, bodily autonomy, and family planning in decision-making. Participants further expressed that any efforts at governance of AWT should ensure that the technology complements, rather than curtails, existing methods of reproduction and assisted reproduction, and enhances choice for those desiring parenthood. For our participants, AWT was seen as a medical device that had the potential to improve lives while ensuring that abortion-seekers’ rights to control their bodies and reproduction were not impeded. Our study demonstrates that the current ban against the development and use of AWT is a form of <em>gestational stratification</em> that privileges those with access to a uterus for gestation which limits reproductive choice. Policymakers and legislators should consider these perspectives when developing policies and regulations at the intersection of abortion and new assisted human reproduction technologies.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100529"},"PeriodicalIF":1.8,"publicationDate":"2025-01-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143174582","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}
Pub Date : 2025-01-09DOI: 10.1016/j.ssmqr.2025.100528
Esther Rodríguez Almaraz , Tarek Carlos Salman-Monte , Jaime Calvo-Alen , Ma Julia Barbado Ajo , José María Álvaro-Gracia Álvaro , Pilar Bernabeu , Joaquín Borrás Blasco , Silvia Pérez Ortega , Raül Rubio Renau , Carlota Solà Marsiñach , Marta Galvez-Fernandez , Noemí Bahamontes-Rosa , Joaquín Sánchez-Covisa Hernández , Maria Galindo Izquierdo
Good quality doctor-patient interactions foster patient involvement and increase trust, treatment satisfaction and adherence. However, what constitutes optimal doctor-patient communication in systemic lupus erythematosus (SLE) is unclear. This study aimed to identify gaps in the communication between clinicians and SLE patients. The LupusVoice Study was a qualitative, descriptive, observational, multicenter, and cross-sectional ethnographic study including the experiences of 40 patients with SLE, and the perceptions of 9 SLE specialized clinicians, from six different hospitals in Spain, collected through interviews and analyzed through thematic analysis. This study identified gaps in doctor-patient communication in four areas: diagnosis, pharmacological treatment, non-pharmacological strategies, and pregnancy. Patients were not satisfied with the communication of the diagnosis, aiming to receive more information about SLE and its impact on quality of life in a realistic and tactful manner. Suboptimal communication was mainly explained by clinicians’ lack of time. Regarding pharmacological treatment, patients wanted to have known more about the side-effects, not reported by clinicians due to time constraints and fear of non-adherence. Concerning non-pharmacological measures, doctors did not provide information about diet due to skepticism about its benefits and did not usually address psychological problems. Regarding pregnancy, while patients missed earlier and more detailed family planning counselling, clinicians only offered it when women manifested their desire to conceive. To improve SLE patients’ experiences, efforts should be made towards increasing awareness of communication gaps among HCPs while supporting them in communication delivery with the figure of a specialized nurse.
{"title":"Doctor-patient communication in Systemic Lupus Erythematosus: Insights from the LupusVoice study","authors":"Esther Rodríguez Almaraz , Tarek Carlos Salman-Monte , Jaime Calvo-Alen , Ma Julia Barbado Ajo , José María Álvaro-Gracia Álvaro , Pilar Bernabeu , Joaquín Borrás Blasco , Silvia Pérez Ortega , Raül Rubio Renau , Carlota Solà Marsiñach , Marta Galvez-Fernandez , Noemí Bahamontes-Rosa , Joaquín Sánchez-Covisa Hernández , Maria Galindo Izquierdo","doi":"10.1016/j.ssmqr.2025.100528","DOIUrl":"10.1016/j.ssmqr.2025.100528","url":null,"abstract":"<div><div>Good quality doctor-patient interactions foster patient involvement and increase trust, treatment satisfaction and adherence. However, what constitutes optimal doctor-patient communication in systemic lupus erythematosus (SLE) is unclear. This study aimed to identify gaps in the communication between clinicians and SLE patients. The LupusVoice Study was a qualitative, descriptive, observational, multicenter, and cross-sectional ethnographic study including the experiences of 40 patients with SLE, and the perceptions of 9 SLE specialized clinicians, from six different hospitals in Spain, collected through interviews and analyzed through thematic analysis. This study identified gaps in doctor-patient communication in four areas: diagnosis, pharmacological treatment, non-pharmacological strategies, and pregnancy. Patients were not satisfied with the communication of the diagnosis, aiming to receive more information about SLE and its impact on quality of life in a realistic and tactful manner. Suboptimal communication was mainly explained by clinicians’ lack of time. Regarding pharmacological treatment, patients wanted to have known more about the side-effects, not reported by clinicians due to time constraints and fear of non-adherence. Concerning non-pharmacological measures, doctors did not provide information about diet due to skepticism about its benefits and did not usually address psychological problems. Regarding pregnancy, while patients missed earlier and more detailed family planning counselling, clinicians only offered it when women manifested their desire to conceive. To improve SLE patients’ experiences, efforts should be made towards increasing awareness of communication gaps among HCPs while supporting them in communication delivery with the figure of a specialized nurse.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100528"},"PeriodicalIF":1.8,"publicationDate":"2025-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143174111","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}
Female genital mutilation or cutting (FGM/C) or circumcision can have lasting consequences on survivors' sexual health and is an important public health issue in Western countries due to migration. While some quantitative reviews have examined the psychosexual consequences of FGM/C, survivors’ perspectives remain understudied.
Objective
We aim to synthesize existing qualitative data on the experiences of women who have undergone FGM/C and who live in Western countries, focusing on their perspectives regarding sexual health.
Methods
A systematic search was performed in six databases to identify relevant qualitative or mixed-method empirical articles that pertain to sexual health-related matters and provide direct quotations from adult participants who have undergone FGM/C and who live in Western countries. Data was thematically synthesized using QSR's Nvivo14.
Results
We synthesized data from 27 articles and identified three overarching themes related to the control of women's bodies and sexuality: 1) Rigid sexual and gender norms as obstacles to sexual fulfillment, 2) FGM/C as both creator and annihilator of sexual identity and feeling, 3) The hegemony of the taboo related to FGM/C and sexuality leading to the sexual subjugation of women.
Conclusion
This study identified macro (e.g., sexual and gender norms, roles, diktats) and micro-level factors (e.g., FGM/C itself, sexual expectations) influencing the sexual health of women who have undergone FGM/C and who live in Western countries. Future research, health promotion initiatives, and psychosexual care should consider the various dimensions of sexuality when addressing FGM/C survivors’ sexual health.
{"title":"A qualitative metasynthesis on the sexual health of women who have undergone female genital mutilation or cutting (FGM/C) living in western countries","authors":"Emmanuelle Gareau , Andréanne Dufour , Christina Zarowsky , Olivier Ferlatte","doi":"10.1016/j.ssmqr.2025.100523","DOIUrl":"10.1016/j.ssmqr.2025.100523","url":null,"abstract":"<div><h3>Rationale</h3><div>Female genital mutilation or cutting (FGM/C) or circumcision can have lasting consequences on survivors' sexual health and is an important public health issue in Western countries due to migration. While some quantitative reviews have examined the psychosexual consequences of FGM/C, survivors’ perspectives remain understudied.</div></div><div><h3>Objective</h3><div>We aim to synthesize existing qualitative data on the experiences of women who have undergone FGM/C and who live in Western countries, focusing on their perspectives regarding sexual health.</div></div><div><h3>Methods</h3><div>A systematic search was performed in six databases to identify relevant qualitative or mixed-method empirical articles that pertain to sexual health-related matters and provide direct quotations from adult participants who have undergone FGM/C and who live in Western countries. Data was thematically synthesized using QSR's Nvivo14.</div></div><div><h3>Results</h3><div>We synthesized data from 27 articles and identified three overarching themes related to the control of women's bodies and sexuality: 1) Rigid sexual and gender norms as obstacles to sexual fulfillment, 2) FGM/C as both creator and annihilator of sexual identity and feeling, 3) The hegemony of the taboo related to FGM/C and sexuality leading to the sexual subjugation of women.</div></div><div><h3>Conclusion</h3><div>This study identified macro (e.g., sexual and gender norms, roles, diktats) and micro-level factors (e.g., FGM/C itself, sexual expectations) influencing the sexual health of women who have undergone FGM/C and who live in Western countries. Future research, health promotion initiatives, and psychosexual care should consider the various dimensions of sexuality when addressing FGM/C survivors’ sexual health.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100523"},"PeriodicalIF":1.8,"publicationDate":"2025-01-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143437079","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}
Pub Date : 2025-01-08DOI: 10.1016/j.ssmqr.2025.100526
Madeline Villalba , Gemmae M. Fix , Rachel Schenkel , Mary Ann Chiasson , Allen L. Gifford , Peter Gordon , Helen-Maria Lekas , Michael T. Yin , Abigail Baim-Lance
{"title":"Exploring HIV provider framings of living and aging with HIV","authors":"Madeline Villalba , Gemmae M. Fix , Rachel Schenkel , Mary Ann Chiasson , Allen L. Gifford , Peter Gordon , Helen-Maria Lekas , Michael T. Yin , Abigail Baim-Lance","doi":"10.1016/j.ssmqr.2025.100526","DOIUrl":"10.1016/j.ssmqr.2025.100526","url":null,"abstract":"","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100526"},"PeriodicalIF":1.8,"publicationDate":"2025-01-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143174157","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}
Pub Date : 2025-01-07DOI: 10.1016/j.ssmqr.2025.100527
Isabelle Pearson , Meghna Ranganathan , Elaine Chase , Cing Van Kim , Giulia Greco , Ei Ei Soe , Khin Lae , Nandar Oo , Zin Mar Hlaing , Brooke Zobrist , Cathy Zimmerman
Since the 2021 coup in Myanmar, the country has been driven into further social, political and economic turmoil. The United Nations estimates that 18.6 million people need humanitarian support. Among those most affected are adolescent girls aged 10–19 years who, as adolescents and young women, face unique risks to their health and wellbeing and require tailored interventions to promote their health and wellbeing both now and in the future. Supporting adolescent girls and young women during conflict means addressing their increased risk of gender-based violence, forced marriage, disrupted education, and access to health services. There is limited evidence on the effects of Myanmar's current political situation on adolescent girls and young women, and even less on what can be done to support their health and wellbeing during this period of protracted instability. In this qualitative study, we used the capabilities approach to conceptualise wellbeing from the perspectives of adolescent girls and young women in Myanmar. Collaborating with four young female peer-researchers, we conducted 12 participatory focus group discussions with 73 girls from Yangon, Sagaing and Mandalay. Our findings identified key themes of wellbeing that were prioritised by our study population: education, agency, hope and happiness, which were being undermined by gender inequality and the ongoing conflict. This study highlights the benefits of the capabilities approach in identifying the complex wellbeing needs of adolescent girls and young women in crisis settings as a basis for programme design and implementation.
{"title":"\"Butterflies in a jar\": How girls and young women conceptualise wellbeing in conflict-affected Myanmar","authors":"Isabelle Pearson , Meghna Ranganathan , Elaine Chase , Cing Van Kim , Giulia Greco , Ei Ei Soe , Khin Lae , Nandar Oo , Zin Mar Hlaing , Brooke Zobrist , Cathy Zimmerman","doi":"10.1016/j.ssmqr.2025.100527","DOIUrl":"10.1016/j.ssmqr.2025.100527","url":null,"abstract":"<div><div>Since the 2021 coup in Myanmar, the country has been driven into further social, political and economic turmoil. The United Nations estimates that 18.6 million people need humanitarian support. Among those most affected are adolescent girls aged 10–19 years who, as adolescents and young women, face unique risks to their health and wellbeing and require tailored interventions to promote their health and wellbeing both now and in the future. Supporting adolescent girls and young women during conflict means addressing their increased risk of gender-based violence, forced marriage, disrupted education, and access to health services. There is limited evidence on the effects of Myanmar's current political situation on adolescent girls and young women, and even less on what can be done to support their health and wellbeing during this period of protracted instability. In this qualitative study, we used the capabilities approach to conceptualise wellbeing from the perspectives of adolescent girls and young women in Myanmar. Collaborating with four young female peer-researchers, we conducted 12 participatory focus group discussions with 73 girls from Yangon, Sagaing and Mandalay. Our findings identified key themes of wellbeing that were prioritised by our study population: education, agency, hope and happiness, which were being undermined by gender inequality and the ongoing conflict. This study highlights the benefits of the capabilities approach in identifying the complex wellbeing needs of adolescent girls and young women in crisis settings as a basis for programme design and implementation.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100527"},"PeriodicalIF":1.8,"publicationDate":"2025-01-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143174159","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}
Pub Date : 2024-12-30DOI: 10.1016/j.ssmqr.2024.100522
Maria Caiata-Zufferey , Reka Schweighoffer , Monica Aceti , Carla Pedrazzani , Maria C. Katapodi
For unaffected women at high risk for developing breast cancer due to pathogenic variants in BRCA1 or BRCA2 (BRCA) genes, bilateral risk-reducing mastectomy (RRM) is an alternative to intensive surveillance. RRM reduces breast cancer risk but may generate additional health and psychosocial issues, making the choice between surveillance and RRM complex and personal. This grounded theory study explores how unaffected women carrying BRCA pathogenic variants engage in a decision-making process leading to the choice of undergoing RRM. Narrative data were collected in Switzerland through biographical interviews with 38 unaffected women carrying BRCA pathogenic variants. Participants had either undergone RRM or were planning the surgery in the future. Findings indicate that the decision to undergo RRM was influenced by femininity and body image, current life engagements, anticipation of surgery risks and outcomes, perception and acceptance of cancer risk, surveillance experiences, attitudes of healthcare providers and family, and financial considerations. These factors interacted, creating contradictions that made decision-making challenging. To navigate this uncertainty, women progressively built their decision through a triple process of making sense: framing RRM as an obligated, empowering and mundane choice. This sense-making process is described as a process of legitimation, through which women decide to undergo RRM and integrate it into their life trajectory, ensuring its acceptability for themselves and their social circles. The discussion provides insights into the legitimation process as a heuristic tool for exploring crucial choices in uncertainty and offers implications for healthcare providers assisting individuals in complex decision-making processes.
{"title":"Navigating complex choices through legitimation: Narrative strategies in risk-reduction mastectomy decision-making among unaffected women with genetic risk for breast cancer in Switzerland","authors":"Maria Caiata-Zufferey , Reka Schweighoffer , Monica Aceti , Carla Pedrazzani , Maria C. Katapodi","doi":"10.1016/j.ssmqr.2024.100522","DOIUrl":"10.1016/j.ssmqr.2024.100522","url":null,"abstract":"<div><div>For unaffected women at high risk for developing breast cancer due to pathogenic variants in BRCA1 or BRCA2 (BRCA) genes, bilateral risk-reducing mastectomy (RRM) is an alternative to intensive surveillance. RRM reduces breast cancer risk but may generate additional health and psychosocial issues, making the choice between surveillance and RRM complex and personal. This grounded theory study explores how unaffected women carrying BRCA pathogenic variants engage in a decision-making process leading to the choice of undergoing RRM. Narrative data were collected in Switzerland through biographical interviews with 38 unaffected women carrying BRCA pathogenic variants. Participants had either undergone RRM or were planning the surgery in the future. Findings indicate that the decision to undergo RRM was influenced by femininity and body image, current life engagements, anticipation of surgery risks and outcomes, perception and acceptance of cancer risk, surveillance experiences, attitudes of healthcare providers and family, and financial considerations. These factors interacted, creating contradictions that made decision-making challenging. To navigate this uncertainty, women progressively built their decision through a triple process of making sense: framing RRM as an obligated, empowering and mundane choice. This sense-making process is described as a process of legitimation, through which women decide to undergo RRM and integrate it into their life trajectory, ensuring its acceptability for themselves and their social circles. The discussion provides insights into the legitimation process as a heuristic tool for exploring crucial choices in uncertainty and offers implications for healthcare providers assisting individuals in complex decision-making processes.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"7 ","pages":"Article 100522"},"PeriodicalIF":1.8,"publicationDate":"2024-12-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143174109","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}
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