SSM. Qualitative research in health最新文献

{"title":"Racial and ethnic differences in patient psychological safety: A qualitative patient narrative study","authors":"Cheryl Rathert ,&nbsp;Derick R. Simmons ,&nbsp;Jessica N. Mittler ,&nbsp;Kimberly Enard ,&nbsp;Joanna Veazey Brooks","doi":"10.1016/j.ssmqr.2024.100491","DOIUrl":"10.1016/j.ssmqr.2024.100491","url":null,"abstract":"<div><div>The existence of racial and ethnic disparities in health outcomes is well-established. In addition to discrimination and social determinants, disparities can result from lower-quality relationships that historically marginalized groups may experience with health care providers and systems. The extent to which patients can connect with and be known by care providers is thought to play a key role in their subsequent diagnoses, treatments, care plans, and health behaviors. Recent research has found that many patients express the need for patient psychological safety (PPS) in order to feel connected. Thus, we were interested in exploring whether there exist racial/ethnic differences in experiences of PPS, as a lack of safety could reduce patients’ opportunities to connect with providers. This study used a patient narrative approach, in which patients respond to open-ended questions in their own words, to examine what patients say related to PPS and the extent to which their characterizations may vary by race and/or ethnicity. Patient responses (n = 1766) were coded to fit into one of three conceptual PPS dimensions: <em>belonging, learning, and participating.</em> Analysis found that nearly all patients described some level of PPS as indicating to them they had a good connection with providers, with greater proportions of Black and Hispanic/Latino patients expressing <em>belonging safety</em>, that is, the need to feel welcomed and respected as a human being. In contrast, White patients were more likely to express <em>participation safety</em>, or the need to have influence on their care. This study contributes a new, nuanced understanding of patient experiences of connecting with care providers.</div></div>","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"6 ","pages":"Article 100491"},"PeriodicalIF":1.8,"publicationDate":"2024-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142433516","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":"Intersectional stigma and resilience among female sex workers in Namibia: Drivers, manifestations, and implications for PrEP use","authors":"Kaitlyn Atkins ,&nbsp;Caitlin E. Kennedy ,&nbsp;Anne L. Stangl ,&nbsp;Stefan D. Baral ,&nbsp;Sarah M. Murray ,&nbsp;Denis Mali ,&nbsp;Leonard Bikinesi ,&nbsp;Laimi Ashipala ,&nbsp;Jason B. Reed ,&nbsp;Haneefa T. Saleem","doi":"10.1016/j.ssmqr.2024.100496","DOIUrl":"10.1016/j.ssmqr.2024.100496","url":null,"abstract":"","PeriodicalId":74862,"journal":{"name":"SSM. Qualitative research in health","volume":"6 ","pages":"Article 100496"},"PeriodicalIF":1.8,"publicationDate":"2024-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142572236","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":"Conceptualizing precarious employment through the lens of social reproduction: Potential implications for health research and action","authors":"Emilia F. Vignola ,&nbsp;Emily Q. Ahonen ,&nbsp;Luis Saavedra ,&nbsp;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}

{"title":"A “rotating menu” of medical uncertainty for families affected by telomere biology disorders: A qualitative interview study","authors":"Emily E. Pearce ,&nbsp;Alina Majid ,&nbsp;Toniya Brown ,&nbsp;Catherine Wilsnack ,&nbsp;Camella Rising ,&nbsp;Ashley S. Thompson ,&nbsp;Rowan Forbes Shepherd ,&nbsp;Arman Niknafs ,&nbsp;Allison Werner-Lin ,&nbsp;Melissa B. Gilkey ,&nbsp;Kurt M. Ribisl ,&nbsp;Sadie P. Hutson ,&nbsp;Paul K.J. Han ,&nbsp;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}

{"title":"Microbes and marginalisation: ‘Facing’ antimicrobial resistance in bedridden patients in a peri-urban area of Thailand","authors":"Phakha Whanpuch ,&nbsp;Anna Perris ,&nbsp;Panoopat Poompruek ,&nbsp;Clare I.R. Chandler ,&nbsp;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}

{"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,&nbsp;Adrian Guta,&nbsp;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}

{"title":"Understanding parenting responsibilities as a challenge to mental healthcare access for mothers with a mental illness in Tyrol, Austria","authors":"Monika Schamschula ,&nbsp;Annette Bauer ,&nbsp;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}

{"title":"Exploring parent treatment decision-making in relapsed and refractory neuroblastoma: A qualitative study","authors":"Helen Pearson ,&nbsp;Faith Gibson ,&nbsp;Michelle Myall ,&nbsp;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}

{"title":"Institutional and systemic barriers and facilitators affecting healthcare access for Black women in Alberta","authors":"Mary Olukotun ,&nbsp;Adedoyin Olanlesi-Aliu ,&nbsp;Yawa Idi ,&nbsp;Tehseen Ladha ,&nbsp;Paul Bailey ,&nbsp;Regine King ,&nbsp;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}

{"title":"Older, gay men's navigation of mental health and substance use challenges: A qualitative exploration","authors":"Ingrid Handlovsky ,&nbsp;Tessa Wonsiak ,&nbsp;Bernadette Zakher ,&nbsp;Olivier Ferlatte ,&nbsp;Hannah Kia ,&nbsp;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}