Pub Date : 2024-10-10DOI: 10.1016/j.ssmqr.2024.100494
Emilia F. Vignola , Emily Q. Ahonen , Luis Saavedra , Emma K. Tsui
Research on the health and well-being impact of precarious employment (PE) commonly conceptualizes employment as a relation of power between workers and employers, a perspective informed by power relations and relational social class theories. Social reproduction theory is a less common but complementary conceptual lens that can be used to investigate PE and health, in which the nature of work has relevance for the quality of employment. Social reproduction theory points to relations between groups of workers who are valued differently based on the capacity of their work to generate profit. Attending to relations between workers based on value, in addition to the well-established power relation between workers and employers, may point to consequences for health and well-being that are worth exploring empirically, and could serve as another tool to spur collective action around PE and its health effects. We provide an illustration and discuss the potential implications of this theoretical approach using data from in-depth interviews conducted in 2022 among precariously employed food workers in New York City.
关于不稳定就业（PE）对健康和福祉影响的研究通常将就业概念化为工人与雇主之间的权力关系，这种观点参考了权力关系和社会阶层关系理论。社会再生产理论是一个不太常见但却可以用来研究不稳定就业与健康的补充概念视角，其中工作性质与就业质量息息相关。社会再生产理论指出了工人群体之间的关系，他们因其工作产生利润的能力而受到不同的重视。除了工人与雇主之间既定的权力关系外，关注工人之间基于价值的关系可能会对健康和福祉产生影响，值得进行实证探索，并可作为另一种工具，激励围绕 PE 及其对健康的影响采取集体行动。我们利用 2022 年对纽约市就业不稳定的食品工人进行的深入访谈数据，对这一理论方法的潜在影响进行了说明和讨论。
{"title":"Conceptualizing precarious employment through the lens of social reproduction: Potential implications for health research and action","authors":"Emilia F. Vignola , Emily Q. Ahonen , Luis Saavedra , Emma K. Tsui","doi":"10.1016/j.ssmqr.2024.100494","DOIUrl":"10.1016/j.ssmqr.2024.100494","url":null,"abstract":"<div><div>Research on the health and well-being impact of precarious employment (PE) commonly conceptualizes employment as a relation of power between workers and employers, a perspective informed by power relations and relational social class theories. Social reproduction theory is a less common but complementary conceptual lens that can be used to investigate PE and health, in which the <em>nature of work</em> has relevance for the <em>quality of employment</em>. Social reproduction theory points to relations between groups of workers who are valued differently based on the capacity of their work to generate profit. Attending to relations between workers based on value, in addition to the well-established power relation between workers and employers, may point to consequences for health and well-being that are worth exploring empirically, and could serve as another tool to spur collective action around PE and its health effects. We provide an illustration and discuss the potential implications of this theoretical approach using data from in-depth interviews conducted in 2022 among precariously employed food workers in New York City.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"6 ","pages":"Article 100494"},"PeriodicalIF":1.8,"publicationDate":"2024-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142533345","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 : 2024-10-05DOI: 10.1016/j.ssmqr.2024.100486
Emily E. Pearce , Alina Majid , Toniya Brown , Catherine Wilsnack , Camella Rising , Ashley S. Thompson , Rowan Forbes Shepherd , Arman Niknafs , Allison Werner-Lin , Melissa B. Gilkey , Kurt M. Ribisl , Sadie P. Hutson , Paul K.J. Han , Sharon A. Savage
Background
Medical uncertainty may cause distress and challenge medical decision-making for patients with rare diseases and their caregivers. Few studies have examined the experience and management of medical uncertainty in rare disease and the dynamics of multiple medical uncertainty sources, issues, and management strategies.
Objective
We explored the experience and management of uncertainty in individuals with telomere biology disorders (TBDs), a set of rare cancer-prone bone marrow failure syndromes, and their caregivers.
Design
Participants (N = 32) in this qualitative-descriptive study were individuals with a TBD (n = 17) and/or their caregivers (n = 15). We thematically analyzed transcripts to describe the presence and dynamics of medical uncertainty in TBDs using categories from a previously published taxonomy.
Results
Individuals with TBDs and caregivers described medical uncertainty as a chronic burden embodied amidst a range of interrelated sources and issues. Scientific uncertainty included diagnostic and prognostic ambiguity. Practical uncertainty focused on logistical challenges of building and maintaining medical care teams. Personal uncertainty included difficulty realigning self-identity, goals, and relationship expectations post-diagnosis. Scientific, practical, and personal uncertainty issues were entangled. The rarity of TBDs resulted in limited scientific knowledge, which gave rise to practical and personal uncertainties affecting medical decision-making and relationship formation (e.g., creating trusted care teams where patient knowledge of TBDs may exceed that of clinicians). Participants used multiple strategies for uncertainty management, particularly information-seeking and community-building. However, these management strategies could intensify, rather than resolve, participants’ medical uncertainty.
Conclusion
In TBDs, medical uncertainty manifests as a network of multiple, interrelated, sources and issues, which require evolving management strategies. Researchers must be mindful that complex, synergistic uncertainty networks contribute to psychosocial challenges in TBDs. Additional research is warranted to address scientific uncertainty in TBDs, including clinical manifestations and underlying biology, and to develop psychosocial interventions that recognize and anticipate evolving uncertainty.
{"title":"A “rotating menu” of medical uncertainty for families affected by telomere biology disorders: A qualitative interview study","authors":"Emily E. Pearce , Alina Majid , Toniya Brown , Catherine Wilsnack , Camella Rising , Ashley S. Thompson , Rowan Forbes Shepherd , Arman Niknafs , Allison Werner-Lin , Melissa B. Gilkey , Kurt M. Ribisl , Sadie P. Hutson , Paul K.J. Han , Sharon A. Savage","doi":"10.1016/j.ssmqr.2024.100486","DOIUrl":"10.1016/j.ssmqr.2024.100486","url":null,"abstract":"<div><h3>Background</h3><div>Medical uncertainty may cause distress and challenge medical decision-making for patients with rare diseases and their caregivers. Few studies have examined the experience and management of medical uncertainty in rare disease and the dynamics of multiple medical uncertainty sources, issues, and management strategies.</div></div><div><h3>Objective</h3><div>We explored the experience and management of uncertainty in individuals with telomere biology disorders (TBDs), a set of rare cancer-prone bone marrow failure syndromes, and their caregivers.</div></div><div><h3>Design</h3><div>Participants (N = 32) in this qualitative-descriptive study were individuals with a TBD (n = 17) and/or their caregivers (n = 15). We thematically analyzed transcripts to describe the presence and dynamics of medical uncertainty in TBDs using categories from a previously published taxonomy.</div></div><div><h3>Results</h3><div>Individuals with TBDs and caregivers described medical uncertainty as a chronic burden embodied amidst a range of interrelated sources and issues. <em>Scientific uncertainty</em> included diagnostic and prognostic ambiguity. <em>Practical uncertainty</em> focused on logistical challenges of building and maintaining medical care teams. <em>Personal uncertainty</em> included difficulty realigning self-identity, goals, and relationship expectations post-diagnosis. Scientific, practical, and personal uncertainty issues were entangled. The rarity of TBDs resulted in limited scientific knowledge, which gave rise to practical and personal uncertainties affecting medical decision-making and relationship formation (e.g., creating trusted care teams where patient knowledge of TBDs may exceed that of clinicians). Participants used multiple strategies for uncertainty management, particularly information-seeking and community-building. However, these management strategies could intensify, rather than resolve, participants’ medical uncertainty.</div></div><div><h3>Conclusion</h3><div>In TBDs, medical uncertainty manifests as a network of multiple, interrelated, sources and issues, which require evolving management strategies. Researchers must be mindful that complex, synergistic uncertainty networks contribute to psychosocial challenges in TBDs. Additional research is warranted to address scientific uncertainty in TBDs, including clinical manifestations and underlying biology, and to develop psychosocial interventions that recognize and anticipate evolving uncertainty.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"6 ","pages":"Article 100486"},"PeriodicalIF":1.8,"publicationDate":"2024-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142433518","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}
Reducing human-microbial encounters through improved infection prevention and control (IPC) is widely acknowledged to be critical for reducing the emergence, transmission and burden of antimicrobial resistance (AMR). However, despite its centrality in the Global Action Plan (GAP) on AMR and adoption as a goal in National Action Plans around the world, there has been limited progress on reducing the incidence of antimicrobial resistant infections globally. In this paper, we argue that closer attention to different faces of AMR could propel progress in this area, with a focus on bedridden people situated in liminal spaces in the Thai health system and suburban economy. Our ethnographic fieldwork followed the cases of 16 bedridden people through the eyes of their carers and medical staff. We 'descended into the ordinary' to encounter individuals living - and dying - in the shadows of the labour-intensive suburbs of Bangkok. Here, AMR and IPC protocols are operationalised in the context of competing priorities and pragmatic decision-making. Focussing on three ethnographic vignettes, we use the analytic frames of precarity and care to consider how particular (bedridden) bodies are differentially exposed to AMR infections in the context of economic, social, and political arrangements that structure embodied vulnerabilities and forms and foci of care. Whilst the political work of calculating the burden of AMR may be oriented around galvanising support through a sense of magnitude and generalised risk, this research serves as a reminder that the faces of AMR include those who disproportionately shoulder the global burden of AMR, making it at once exceptional and ordinary.
人们普遍认为，通过改善感染预防与控制（IPC）来减少人与微生物的接触，对于减少抗菌药耐药性（AMR）的出现、传播和负担至关重要。然而，尽管它在《全球抗菌药物耐药性行动计划》（GAP）中占据核心地位，并被世界各地的《国家行动计划》采纳为目标，但在降低全球抗菌药物耐药性感染发病率方面进展有限。在本文中，我们将重点关注泰国医疗系统和郊区经济中处于边缘空间的卧床不起者，认为密切关注 AMR 的不同表现形式可以推动该领域的进展。我们的人种学实地调查通过护理人员和医务人员的视角，对 16 名卧床不起者的病例进行了跟踪调查。我们 "深入寻常百姓家"，在劳动密集型的曼谷郊区阴暗处与生活和死亡中的人们相遇。在这里，AMR 和 IPC 协议在相互竞争的优先事项和务实决策的背景下得以实施。我们将重点放在三个人种学小故事上，利用不稳定性和护理的分析框架来考虑在经济、社会和政治安排的背景下，特定（卧床不起）的身体是如何不同程度地受到 AMR 感染的，这些安排构建了身体的脆弱性以及护理的形式和重点。虽然计算 AMR 负担的政治工作可能是以通过规模感和普遍风险来激发支持为导向，但这项研究提醒我们，AMR 的面孔包括那些不成比例地承担着全球 AMR 负担的人，使其既特殊又普通。
{"title":"Microbes and marginalisation: ‘Facing’ antimicrobial resistance in bedridden patients in a peri-urban area of Thailand","authors":"Phakha Whanpuch , Anna Perris , Panoopat Poompruek , Clare I.R. Chandler , Luechai Sri-ngernyuang","doi":"10.1016/j.ssmqr.2024.100489","DOIUrl":"10.1016/j.ssmqr.2024.100489","url":null,"abstract":"<div><div>Reducing human-microbial encounters through improved infection prevention and control (IPC) is widely acknowledged to be critical for reducing the emergence, transmission and burden of antimicrobial resistance (AMR). However, despite its centrality in the Global Action Plan (GAP) on AMR and adoption as a goal in National Action Plans around the world, there has been limited progress on reducing the incidence of antimicrobial resistant infections globally. In this paper, we argue that closer attention to different faces of AMR could propel progress in this area, with a focus on bedridden people situated in liminal spaces in the Thai health system and suburban economy. Our ethnographic fieldwork followed the cases of 16 bedridden people through the eyes of their carers and medical staff. We 'descended into the ordinary' to encounter individuals living - and dying - in the shadows of the labour-intensive suburbs of Bangkok. Here, AMR and IPC protocols are operationalised in the context of competing priorities and pragmatic decision-making. Focussing on three ethnographic vignettes, we use the analytic frames of precarity and care to consider how particular (bedridden) bodies are differentially exposed to AMR infections in the context of economic, social, and political arrangements that structure embodied vulnerabilities and forms and foci of care. Whilst the political work of calculating the burden of AMR may be oriented around galvanising support through a sense of magnitude and generalised risk, this research serves as a reminder that the faces of AMR include those who disproportionately shoulder the global burden of AMR, making it at once exceptional and ordinary.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"6 ","pages":"Article 100489"},"PeriodicalIF":1.8,"publicationDate":"2024-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142422340","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 : 2024-10-01DOI: 10.1016/j.ssmqr.2024.100488
Aman Ahluwalia-Cameron, Adrian Guta, Elizabeth Donnelly
Borderline personality disorder (BPD) is a mental health condition characterized by unstable relationships, self-image, and emotions, as well as impulsive behaviors and high rates of morbidity and mortality. Provider-based stigmatization of individuals with BPD is associated with poor health outcomes and increased mortality risk. However, little is known about social workers' experiences in providing care to people living with BPD (PLBPD). This study explored social workers' perspectives on the impact of stigma on care for PLBPD. Between April 2020 and January 2021, qualitative semi-structured interviews were conducted with 41 social workers practicing across the continuum of care (e.g., community services and hospitals) in Ontario, Canada. Data were analyzed using Critical Realist Analysis. Four primary themes emerged: (1) stigmatization of PLBPD due to the complexity of their needs (e.g., avoidance, blame, name-calling by providers); (2) lack of BPD-specific training and education in social work curricula; (3) observed stigmatization of PLBPD by social workers and other professionals (e.g., psychologists and physicians); and (4) suggestions for improving care experiences for PLBPD. Results suggest that provider-based stigma remains a significant quality of care issue affecting PLBPD. Further research is needed to understand the scope of these issues among diverse PLBPD populations, within social work practice, and across interprofessional care settings.
{"title":"“I get the referral because nobody else wants to work with this person”: A critical realist analysis of social workers providing care to people living with borderline personality disorder","authors":"Aman Ahluwalia-Cameron, Adrian Guta, Elizabeth Donnelly","doi":"10.1016/j.ssmqr.2024.100488","DOIUrl":"10.1016/j.ssmqr.2024.100488","url":null,"abstract":"<div><div>Borderline personality disorder (BPD) is a mental health condition characterized by unstable relationships, self-image, and emotions, as well as impulsive behaviors and high rates of morbidity and mortality. Provider-based stigmatization of individuals with BPD is associated with poor health outcomes and increased mortality risk. However, little is known about social workers' experiences in providing care to people living with BPD (PLBPD). This study explored social workers' perspectives on the impact of stigma on care for PLBPD. Between April 2020 and January 2021, qualitative semi-structured interviews were conducted with 41 social workers practicing across the continuum of care (e.g., community services and hospitals) in Ontario, Canada. Data were analyzed using Critical Realist Analysis. Four primary themes emerged: (1) stigmatization of PLBPD due to the complexity of their needs (e.g., avoidance, blame, name-calling by providers); (2) lack of BPD-specific training and education in social work curricula; (3) observed stigmatization of PLBPD by social workers and other professionals (e.g., psychologists and physicians); and (4) suggestions for improving care experiences for PLBPD. Results suggest that provider-based stigma remains a significant quality of care issue affecting PLBPD. Further research is needed to understand the scope of these issues among diverse PLBPD populations, within social work practice, and across interprofessional care settings.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"6 ","pages":"Article 100488"},"PeriodicalIF":1.8,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142422341","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 : 2024-10-01DOI: 10.1016/j.ssmqr.2024.100490
Monika Schamschula , Annette Bauer , Jean Lillian Paul
It is estimated that one out of three individuals will experience a mental illness at some point in their lives. Parenting with a mental illness can be particularly challenging and often requires additional support and resources to navigate through it. One of the challenges is accessing mental healthcare while also having parenting responsibilities. This study aims to explore how mothers with a mental illness in Tyrol, Austria, experience the impact of their parenting responsibilities in terms of accessing mental healthcare, and which processes contribute to such challenges. We draw from 20 semi-narrative interviews with mothers with a mental illness which were conducted in the context of a larger research project, focusing on developing and evaluating support for families with a parent with a mental illness. We identified three main findings affecting access to mental healthcare services: (1) organisational issues with mental healthcare services, (2) socio-cultural norms around family and care work, and (3) identity-related expectation of being a ‘good mother’ who is always there for her children. The concern for the children's wellbeing was also closely linked to these aspects. It is important, however, to consider the ways in which these findings are interwoven, and that social support could mitigate challenges. The findings of this study contribute to understanding childcare responsibility as a significant challenge to accessing mental healthcare for mothers with a mental illness and recognising it as a structural, socio-cultural, and identity-related phenomenon.
{"title":"Understanding parenting responsibilities as a challenge to mental healthcare access for mothers with a mental illness in Tyrol, Austria","authors":"Monika Schamschula , Annette Bauer , Jean Lillian Paul","doi":"10.1016/j.ssmqr.2024.100490","DOIUrl":"10.1016/j.ssmqr.2024.100490","url":null,"abstract":"<div><div>It is estimated that one out of three individuals will experience a mental illness at some point in their lives. Parenting with a mental illness can be particularly challenging and often requires additional support and resources to navigate through it. One of the challenges is accessing mental healthcare while also having parenting responsibilities. This study aims to explore how mothers with a mental illness in Tyrol, Austria, experience the impact of their parenting responsibilities in terms of accessing mental healthcare, and which processes contribute to such challenges. We draw from 20 semi-narrative interviews with mothers with a mental illness which were conducted in the context of a larger research project, focusing on developing and evaluating support for families with a parent with a mental illness. We identified three main findings affecting access to mental healthcare services: (1) organisational issues with mental healthcare services, (2) socio-cultural norms around family and care work, and (3) identity-related expectation of being a ‘good mother’ who is always there for her children. The concern for the children's wellbeing was also closely linked to these aspects. It is important, however, to consider the ways in which these findings are interwoven, and that social support could mitigate challenges. The findings of this study contribute to understanding childcare responsibility as a significant challenge to accessing mental healthcare for mothers with a mental illness and recognising it as a structural, socio-cultural, and identity-related phenomenon.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"6 ","pages":"Article 100490"},"PeriodicalIF":1.8,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142422339","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}
Parents often become involved in making treatment decisions for their child with cancer when there is no standard treatment protocol, typically seen in poor-prognosis cancers. Advances in scientific medicine has led to more treatment options being available for children resulting in parents making repeated treatment decisions depending on their child's response to treatment. The emotional turmoil of their child's cancer diagnosis can be exacerbated when combined with making decisions that have uncertain outcomes. This study aimed to identify, describe, explore, and explain how parents made repeated treatment decisions and the role of emotion in decision-making when their child had relapsed or refractory neuroblastoma, a poor-prognosis cancer.
Data were collected using qualitative interviews between 2020 and 2022 with parents of children with relapsed or refractory neuroblastoma in the United Kingdom. Data were analysed using Reflexive Thematic Analysis.
Eighteen parents who made between one to six treatment decisions participated. Decision-making incorporated four themes which enabled, influenced, and informed how parents made treatment decisions: 1) time as a structure within decision-making; 2) uncertainty and its relationships with treatment risk, side effects and outcomes; 3) parent oscillation of their cognitive and emotional adjustment; 4) parent responsibility and involvement in decision-making. Time was the central organising concept which structured and organised parent decision-making. We adopted Orlikowski and Yates’s (2002) temporal structures to characterise the experience of time and Stroebe and Schut’s (1999) dual-processing theory to explore the oscillation of parent adjustment of their situation cognitively and emotionally. A conceptual framework showed the interrelationships of these themes.
{"title":"Exploring parent treatment decision-making in relapsed and refractory neuroblastoma: A qualitative study","authors":"Helen Pearson , Faith Gibson , Michelle Myall , Anne-Sophie Darlington","doi":"10.1016/j.ssmqr.2024.100487","DOIUrl":"10.1016/j.ssmqr.2024.100487","url":null,"abstract":"<div><div>Parents often become involved in making treatment decisions for their child with cancer when there is no standard treatment protocol, typically seen in poor-prognosis cancers. Advances in scientific medicine has led to more treatment options being available for children resulting in parents making repeated treatment decisions depending on their child's response to treatment. The emotional turmoil of their child's cancer diagnosis can be exacerbated when combined with making decisions that have uncertain outcomes. This study aimed to identify, describe, explore, and explain how parents made repeated treatment decisions and the role of emotion in decision-making when their child had relapsed or refractory neuroblastoma, a poor-prognosis cancer.</div><div>Data were collected using qualitative interviews between 2020 and 2022 with parents of children with relapsed or refractory neuroblastoma in the United Kingdom. Data were analysed using Reflexive Thematic Analysis.</div><div>Eighteen parents who made between one to six treatment decisions participated. Decision-making incorporated four themes which enabled, influenced, and informed how parents made treatment decisions: 1) time as a structure within decision-making; 2) uncertainty and its relationships with treatment risk, side effects and outcomes; 3) parent oscillation of their cognitive and emotional adjustment; 4) parent responsibility and involvement in decision-making. Time was the central organising concept which structured and organised parent decision-making. We adopted Orlikowski and Yates’s (2002) temporal structures to characterise the experience of time and Stroebe and Schut’s (1999) dual-processing theory to explore the oscillation of parent adjustment of their situation cognitively and emotionally. A conceptual framework showed the interrelationships of these themes.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"6 ","pages":"Article 100487"},"PeriodicalIF":1.8,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142358090","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 : 2024-09-20DOI: 10.1016/j.ssmqr.2024.100485
Mary Olukotun , Adedoyin Olanlesi-Aliu , Yawa Idi , Tehseen Ladha , Paul Bailey , Regine King , Bukola Salami
Canada's Black population has experienced significant growth in recent years, with substantial increases noted in the prairie provinces. As Black people continue to make up a growing proportion of the population, it is important to understand their experiences in accessing healthcare services, especially for those who are multiply marginalized. We undertook a qualitative study to examine the healthcare access experiences of Black women in Canada. We completed semi-structured interviews with a sample of 30 Black women from Alberta. Our study was guided by intersectionality to examine how Black women's experience of healthcare access is shaped by social processes related to their socio-demographic characteristics such as being Black, a woman, an immigrant or non-immigrant, and having high or low income. From our thematic analysis we identified three key factors that hinders healthcare access for Black women: socioeconomic barriers, health systems issues, and racism. We identified two types of facilitators: community and institutional facilitators and structural facilitators. Our findings elucidate how Black women's experiences of accessing and utilizing health services in Alberta are influenced by overlapping institutional, structural, and systemic factors.
{"title":"Institutional and systemic barriers and facilitators affecting healthcare access for Black women in Alberta","authors":"Mary Olukotun , Adedoyin Olanlesi-Aliu , Yawa Idi , Tehseen Ladha , Paul Bailey , Regine King , Bukola Salami","doi":"10.1016/j.ssmqr.2024.100485","DOIUrl":"10.1016/j.ssmqr.2024.100485","url":null,"abstract":"<div><div>Canada's Black population has experienced significant growth in recent years, with substantial increases noted in the prairie provinces. As Black people continue to make up a growing proportion of the population, it is important to understand their experiences in accessing healthcare services, especially for those who are multiply marginalized. We undertook a qualitative study to examine the healthcare access experiences of Black women in Canada. We completed semi-structured interviews with a sample of 30 Black women from Alberta. Our study was guided by intersectionality to examine how Black women's experience of healthcare access is shaped by social processes related to their socio-demographic characteristics such as being Black, a woman, an immigrant or non-immigrant, and having high or low income. From our thematic analysis we identified three key factors that hinders healthcare access for Black women: socioeconomic barriers, health systems issues, and racism. We identified two types of facilitators: community and institutional facilitators and structural facilitators. Our findings elucidate how Black women's experiences of accessing and utilizing health services in Alberta are influenced by overlapping institutional, structural, and systemic factors.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"6 ","pages":"Article 100485"},"PeriodicalIF":1.8,"publicationDate":"2024-09-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142358089","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 : 2024-09-19DOI: 10.1016/j.ssmqr.2024.100484
Ingrid Handlovsky , Tessa Wonsiak , Bernadette Zakher , Olivier Ferlatte , Hannah Kia , John L. Oliffe
{"title":"Older, gay men's navigation of mental health and substance use challenges: A qualitative exploration","authors":"Ingrid Handlovsky , Tessa Wonsiak , Bernadette Zakher , Olivier Ferlatte , Hannah Kia , John L. Oliffe","doi":"10.1016/j.ssmqr.2024.100484","DOIUrl":"10.1016/j.ssmqr.2024.100484","url":null,"abstract":"","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"6 ","pages":"Article 100484"},"PeriodicalIF":1.8,"publicationDate":"2024-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2667321524000933/pdfft?md5=c2558e0fbfad17b2a71d2ee222e5a8dc&pid=1-s2.0-S2667321524000933-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142315893","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 : 2024-09-10DOI: 10.1016/j.ssmqr.2024.100479
Dorian S. Odems , Erica Czaja , Saraswathi Vedam , Na’Tasha Evans , Barbara Saltzman , Karen A. Scott
Introduction
Studies that examine obstetric violence and mistreatment during perinatal care demonstrate that Black women experience higher levels of harm and abuse than other racialized groups. Yet these gender-based concepts do not fully recognize the intersectional gender-and race-based harms that Black women experience within the context of quality, safety, and human rights violations in the U.S. healthcare system.
Methods
We performed qualitative secondary analysis from Black women participants in the Giving Voice to Mothers (GVtM) study (n = 304). Primary data collection for the GVtM survey spanned from 2016 to 2017, and our analysis occurred in 2023, focusing on the interpretation of open-ended responses to three categories of inquiry: worst experiences with perinatal care, experiences of being pressured to undergo medical interventions, and desired revisions to birthing experiences. We employed a deductive approach and applied two analytic frameworks – obstetric racism and the Black Birthing Bill of Rights (BBBR)– to categorize Black women's narratives of harm during perinatal care as quality, safety, and human rights violations.
Results
Black women described perinatal care experiences with considerable violations of the BBBR, including disrupted time with babies, racially discordant care, and unaffordable care. These experiences illustrated all six domains of obstetric racism.
Conclusion
This study contributes to an emerging body of Black feminist approaches to knowledge production in obstetric patient safety, emphasizing the critical intersection of gender and race. Furthermore, this study underscores the value of using Black-women-defined frameworks with typologies to interpret the distinct experiences of Black women instead of the more limited gender-based concepts of obstetric violence, mistreatment, and respectful maternity care that lack historical context and contemporary implications of anti-Black racism and misogynoir.
{"title":"“It seemed like she just wanted me to suffer”: Acts of obstetric racism and birthing rights violations against Black women","authors":"Dorian S. Odems , Erica Czaja , Saraswathi Vedam , Na’Tasha Evans , Barbara Saltzman , Karen A. Scott","doi":"10.1016/j.ssmqr.2024.100479","DOIUrl":"10.1016/j.ssmqr.2024.100479","url":null,"abstract":"<div><h3>Introduction</h3><p>Studies that examine obstetric violence and mistreatment during perinatal care demonstrate that Black women experience higher levels of harm and abuse than other racialized groups. Yet these gender-based concepts do not fully recognize the intersectional gender-and race-based harms that Black women experience within the context of quality, safety, and human rights violations in the U.S. healthcare system.</p></div><div><h3>Methods</h3><p>We performed qualitative secondary analysis from Black women participants in the Giving Voice to Mothers (GVtM) study (n = 304). Primary data collection for the GVtM survey spanned from 2016 to 2017, and our analysis occurred in 2023, focusing on the interpretation of open-ended responses to three categories of inquiry: worst experiences with perinatal care, experiences of being pressured to undergo medical interventions, and desired revisions to birthing experiences. We employed a deductive approach and applied two analytic frameworks – obstetric racism and the Black Birthing Bill of Rights (BBBR)– to categorize Black women's narratives of harm during perinatal care as quality, safety, and human rights violations.</p></div><div><h3>Results</h3><p>Black women described perinatal care experiences with considerable violations of the BBBR, including disrupted time with babies, racially discordant care, and unaffordable care. These experiences illustrated all six domains of obstetric racism.</p></div><div><h3>Conclusion</h3><p>This study contributes to an emerging body of Black feminist approaches to knowledge production in obstetric patient safety, emphasizing the critical intersection of gender and race. Furthermore, this study underscores the value of using Black-women-defined frameworks with typologies to interpret the distinct experiences of Black women instead of the more limited gender-based concepts of obstetric violence, mistreatment, and respectful maternity care that lack historical context and contemporary implications of anti-Black racism and misogynoir.</p></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"6 ","pages":"Article 100479"},"PeriodicalIF":1.8,"publicationDate":"2024-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S266732152400088X/pdfft?md5=8f8f28cf9adae780fdd94d1164ad705a&pid=1-s2.0-S266732152400088X-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142272660","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 : 2024-09-10DOI: 10.1016/j.ssmqr.2024.100476
Katherine Leggat-Barr, Galen Joseph, Leslie Riddle, Mikaella Caruncho, Barbara Koenig, Jennifer James
Population genetic testing and risk-based screening have the potential to shift how we determine risk and screen for breast cancer. While much attention has been paid to the experiences of individuals who may be at elevated risk for breast cancer, less is known about how those at average risk make decisions about their health. Through qualitative interviews with 30 participants, we explore how those enrolled in a risk-based screening trial who are determined to be at average risk for breast cancer make screening decisions. We consider how the social context of breast health, known as ‘pink ribbon culture,’ and the pervasiveness of annual mammography as the standard of care make risk-based screening less acceptable for many participants. Risk-based screening paradigms assume that individuals will assess their risk quantitatively based on the risk models that are used. Yet, our findings demonstrate that social and cultural factors influence decision-making surrounding breast cancer screening, an important consideration when implementing risk-based screening programs. We will begin to address a gap in knowledge about how women who are told they are average risk after risk-based screening (most of the population) and recommended to screen less than annually make screening decisions.
人群基因检测和基于风险的筛查有可能改变我们确定乳腺癌风险和筛查的方式。尽管人们对乳腺癌高危人群的经历给予了极大关注，但对于那些处于平均风险水平的人群是如何对自己的健康做出决定的却知之甚少。通过对 30 名参与者的定性访谈，我们探讨了那些被确定为乳腺癌平均风险的风险筛查试验参与者是如何做出筛查决定的。我们考虑了乳腺健康的社会背景（即 "粉红丝带文化"）以及作为医疗标准的每年一次的乳房 X 线照相术的普遍性是如何使许多参与者不太能接受基于风险的筛查的。基于风险的筛查模式假定个人会根据所使用的风险模型对其风险进行量化评估。然而，我们的研究结果表明，社会和文化因素会影响有关乳腺癌筛查的决策，这也是实施基于风险的筛查计划时需要考虑的重要因素。我们将着手解决一个知识空白，即在基于风险的筛查后被告知风险一般（大部分人群）并被建议少于每年筛查一次的女性是如何做出筛查决定的。
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