Designing an education intervention for understanding racism in healthcare in Sweden: development and implementation of anti-racist strategies through shared knowledge production and evaluation.

An educational intervention, based on qualitative evidence of racism in healthcare, is described. Using vignettes from a previous project, interviews were conducted to gather qualitative evidence of racism in healthcare settings from a wide range of healthcare staff in Sweden. From this interview material, case studies were devised that were subsequently presented to trainee healthcare professionals, in a seminar discussion. After the seminar, trainees responded to reflective questions. The order of work, as well as the materials used, are described. This intervention was successful in facilitating discussion about racism in an educational context, despite the difficult nature of these conversations for some participants.

Racism in healthcare: a scoping review.

BACKGROUND: Racism constitutes a barrier towards achieving equitable healthcare as documented in research showing unequal processes of delivering, accessing, and receiving healthcare across countries and healthcare indicators. This review summarizes studies examining how racism is discussed and produced in the process of delivering, accessing and receiving healthcare across various national contexts. METHOD: The PRISMA guidelines for scoping reviews were followed and databases were searched for peer reviewed empirical articles in English across national contexts. No starting date limitation was applied for this review. The end date was December 1, 2020. The review scoped 213 articles. The results were summarized, coded and thematically categorized in regards to the aim. RESULTS: The review yielded the following categories: healthcare users' experiences of racism in healthcare; healthcare staff's experiences of racism; healthcare staff's racial attitudes and beliefs; effects of racism in healthcare on various treatment choices; healthcare staff's reflections on racism in healthcare and; antiracist training in healthcare. Racialized minorities experience inadequate healthcare and being dismissed in healthcare interactions. Experiences of racism are associated with lack of trust and delay in seeking healthcare. Racialized minority healthcare staff experience racism in their workplace from healthcare users and colleagues and lack of organizational support in managing racism. Research on healthcare staff's racial attitudes and beliefs demonstrate a range of negative stereotypes regarding racialized minority healthcare users who are viewed as difficult. Research on implicit racial bias illustrates that healthcare staff exhibit racial bias in favor of majority group. Healthcare staff's racial bias may influence medical decisions negatively. Studies examining healthcare staff's reflections on racism and antiracist training show that healthcare staff tend to construct healthcare as impartial and that healthcare staff do not readily discuss racism in their workplace. CONCLUSIONS: The USA dominates the research. It is imperative that research covers other geo-political contexts. Research on racism in healthcare is mainly descriptive, atheoretical, uses racial categories uncritically and tends to ignore racialization processes making it difficult to conceptualize racism. Sociological research on racism could inform research on racism as it theoretically explains racism's structural embeddedness, which could aid in tackling racism to provide good quality care.

Navigating power dynamics in engaging communities in end-of-life issues - Lessons learned from developing community-based intergenerational arts initiatives about death and loss.

Lack of community engagement in end-of-life issues and age-segregation in Swedish society motivated us to develop Studio DöBra, a community-based intergenerational arts initiative to support community engagement in end-of-life issues and develop intergenerational meeting places. Representatives from several community organizations formed a project group with first author MK, to develop Studio DöBra. Based on analysis of exploratory interviews with professionals involved in other, similar initiatives and data from Studio DöBra development, we discuss challenges related to power dynamics in developing initiatives to engage communities in end-of-life issues, and how these can inform the development of similar initiatives.

Racism in European Health Care: Structural Violence and Beyond.

Research shows how racism can negatively affect access to health care and treatment. However, limited theoretical research exists on conceptualizing racism in health care. In this article, we use structural violence as a theoretical tool to understand how racism as an institutionalized social structure is enacted in subtle ways and how the "violence" built into forms of social organization is rendered invisible through repetition and routinization. We draw on interviews with health care users from three European countries, namely, Sweden, Germany, and Portugal to demonstrate how two interrelated processes of unequal access to resources and inequalities in power can lead to the silencing of suffering and erosion of dignity, respectively. The strength of this article lies in illuminating the mechanisms of subtle racism that damages individuals and leads to loss of trust in health care. It is imperative to address these issues to ensure a responsive and equal health care for all users.

Undoing the unspeakable: researching racism in Swedish healthcare using a participatory process to build dialogue.

BACKGROUND: Racism is difficult to discuss in the context of Swedish healthcare for various cultural and administrative reasons. Herein, we interpret the fragmentary nature of the evidence of racialising processes and the difficulty of reporting racist discrimination in terms of structural violence. METHODS: In response to the unspeakable nature of racism in Swedish healthcare, we propose a phased participatory process to build a common vocabulary and grammar through a consultative framework involving healthcare providers and service users as well as policy-makers. These stakeholders will be involved in an educational intervention to facilitate discussion around and avoidance of racism in service provision. DISCUSSION: Both the participatory process and outcomes of the process, e.g. educational interventions, will contribute to the social and political conversation about racism in healthcare settings. Creating new ways of discussing sensitive topics allows ameliorative actions to be taken, benefitting healthcare providers and users. The urgency of the project is underlined.

Powerlessness, Normalization, and Resistance: A Foucauldian Discourse Analysis of Women's Narratives On Obstetric Fistula in Eastern Sudan.

Eastern Sudan has high prevalence of female circumcision and child marriage constituting a risk for developing obstetric fistula. Few studies have examined gender roles' relation with obstetric fistula in Sudan. To explore the associated power-relations that may put women at increased risk for developing obstetric fistula, we conducted nine interviews with women living with obstetric fistula in Kassala in eastern Sudan. Using a Foucauldian discourse analysis, we identified three discourses: powerlessness, normalization, and covert resistance. Existing power-relations between the women and other societal members revealed their internalization of social norms as absolute truth, and influenced their status and decision-making power in regard to circumcision, early marriage, and other transformative decisions as well as women's general behaviors. The women showed subtle resistance to these norms and the harassment they encountered because of their fistula. These findings suggest that a more in-depth contextual assessment could benefit future maternal health interventions.

Perspectives and experiences of new migrants on health screening in Sweden.

BACKGROUND: In Sweden, migrants from countries considered to have a high burden of certain infectious diseases are offered health screening to prevent the spread of these diseases, but also identify their health needs. However, very little is known about their experiences and perceptions about the screening process. This study aimed at exploring these perceptions and experiences in order to inform policy and clinical practice. METHOD: Using an interpretive description framework, 26 new migrants were interviewed between April and June 2013 in four Swedish counties. Thematic analysis was used to analyze data. RESULTS: The three themes developed include: new country, new practices; new requirements in the new country; and unmet needs and expectations. Participants described what it meant for them to come to a new country with a foreign language, new ways of communicating with caregivers/authorities and being offered health screening without clarification. Participants perceived health screening as a requirement from the authorities to be fulfilled by all newcomers but conceded that it benefits equally the host society and themselves. However, they also expressed concern over the involvement of the Migration Board staff and feared possible collaboration with health service to their detriment. They further stated that the screening program fell short of their expectations as it mainly focused on identifying infectious diseases and overlooked their actual health needs. Finally, they expressed frustration over delay in screening, poor living conditions in reception centers and the restrictive entitlement to care. CONCLUSIONS: Migrants are aware of their vulnerability and the need to undergo health screening though they view it as an official requirement. Thus, those who underwent the screening were more concerned about residency rather than the actual benefits of screening. The issues highlighted in this study may limit access to and uptake of the screening service, and compromise its effectiveness. To maximize the uptake: (1) linguistically and culturally adapted information is needed, (2) other screening approaches should be tried, (3) trained medical interpreters should be used, (4) a holistic and human right approach should be applied, (5) the involvement of migration staff should be reconsidered to avoid confusion and worries. Finally, to improve the effectiveness, (6) all migrants from targeted countries should be offered screening and efforts should be taken to improve the health literacy of migrants and the living conditions in reception centers.

Healthcare staff's racialized talk: The perpetuation of racism in healthcare.

Research points to the existence of racial bias and beliefs among healthcare staff but does not explicate accounts of racialization in healthcare and the day-to-day utterances that have racializing effects excluding minoritized users' right to care. This study understands racism as structural and embedded in societies and institutions, including healthcare, as well as in interactions and talk. Through excavating accounts of healthcare staff's talk that devalues minoritized users, this study posits talk as reflective and constitutive of the dominant structure of racism within which it is situated. Drawing on qualitative interviews with 58 staff in Sweden, the study delineates three categories through which racialized talk differentiates between minoritized and majoritized users. These are: Characterizing minoritized users as 'bad' users, Characterizing minoritized users' health complaints as unworthy and finally, Devaluing minoritized users as justification for suboptimal and differential care. Healthcare staff accounts show that continuous racialization of minoritized users maintains existing power-relations representing Western users as civilized and non-Western users as uncivilized and problematic. Through reiteration, these practices of exclusion become invisible, normalized, and assume the status quo. It is imperative to address racialization as it has implications for the core ethics of healthcare.

Making and unmaking ethnicities in the Rwandan context: implication for gender-based violence, health, and wellbeing of women.

OBJECTIVES: To examine ethnicity and gender violence in Rwanda from cultural and historical perspectives and explore the encounters between cultural beliefs and practices and the new gender equality policy and programs and the implications of the particular encounters to the health of women. DESIGN: The study is a qualitative drawing from the growing range of interactive approaches and methods within an ethnographic framework of the research design. Twenty individual interviews, six focus group discussions and two 'community mobilization' dialogs were conducted. RESULTS: Violence has continued and there is a conflict between cultural tradition, the de-ethnicization, and gender equality policies. Some of the gender violence preventive programs are influenced by the ethos of the traditional norms, and therefore unwittingly perpetuate gender-based violence. CONCLUSIONS: In spite of the progress that Rwanda has made in political empowerment of women, it still seems a long way before real gender equality is achieved. It seems that women's empowerment is not only just an opportunity for political participation but also this is important. It is also about the capacity to make effective choices and to translate them into desired actions and outcomes, unfettered by cultural sanctions. Universalised, top-down gender policy programs have not furnished all women with the necessary capacity to make decisions that affect their traditionally all important reproductive functions; to challenge the embedded gender imbalance; and to strive for a holistic wellbeing of their families, where they play a central role. Indeed, some of the policies could have negative implications to the health of women, in particular, with sexually transmitted infections, including HIV and AIDS.

'Not men enough to rule!': politicization of ethnicities and forcible circumcision of Luo men during the postelection violence in Kenya.

BACKGROUND: As a contribution to ongoing research addressing sexual violence in war and conflict situations in the Democratic Republic of Congo, Kenya and Rwanda, this paper argues that the way sexual violence intersects with other markers of identity, including ethnicity and class, is not clearly articulated. Male circumcision has been popularized, as a public health strategy for prevention of HIV transmission, although evidence of its efficacy is disputable and insufficient attention has been given to the social and cultural implications of male circumcision. METHODS: This paper draws from media reporting and the material supporting the prosecutor at the International Criminal Court case against four Kenyans accused of crimes against humanity, to explore the postelection violence, especially forcible male circumcision. RESULTS: During the postelection violence in Kenya, women were, as in other conflict situations, raped. In addition, men largely from the Luo ethnic group were forcibly circumcised. Male circumcision among the Gikuyu people is a rite of passage, but when forced upon the Luo men, it was also associated with cases of castration and other forms of genital mutilation. The aim appears to have been to humiliate and terrorize not just the individual men, but their entire communities. The paper examines male circumcision and questions why a ritual that has marked a life-course transition for inculcating ethical analysis of the self and others, became a tool of violence against men from an ethnic group where male circumcision is not a cultural practice. CONCLUSION: The paper then reviews the persistence and change in the ritual and more specifically, how male circumcision has become, not just a sexual health risk, but, contrary to the emerging health discourse and more significantly, a politicized ethnic tool and a status symbol among the Gikuyu elite. In the view of the way male circumcision was perpetrated in Kenya, we argue it should be considered as sexual violence, with far-reaching consequences for men's physical and mental health.

Faith, premarital sex and relationships: are church messages in accordance with the perceived realities of the youth? A qualitative study in KwaZulu-Natal, South Africa.

Since religious messages on life style have a strong impact in South Africa, it is important to assess how they relate to the situation for young people at risk of HIV infection. Nine focus group discussions were conducted with youth (n = 62), aged 13-20 years, from the Roman Catholic Church, the Lutheran Church, and the Assemblies of God. Young people were ambivalent toward sexual contacts since these generally were expected to be part of a relationship even though the church condemns premarital sex. Girls perceived the moral norms to concern them more than the boys for whom sexual needs were more accepted. These moral barriers lead to lack of information about protection and may increase the risk of HIV. The realities young people facing should be a major concern for the faith communities.

Discussing racism in healthcare: A qualitative study of reflections by graduate nursing students.

AIM: The aim is to illustrate and analyse reflections from graduate nursing students over their experience of discussing racism in healthcare in an educational intervention. DESIGN: A qualitative, descriptive design was adopted. METHODS: Data were collected through written reflections and analysed through content analysis. In total, 81 students participated in the intervention; 39 paediatric and 42 public health care nursing students. Of those, 27 participants gave consent to have their written reflections included in the study. RESULTS: Three main categories were developed in the content analysis of student reflections: (a) the implicit embeddedness of racism in healthcare organization; (b) the effect of racism on interactions with patients; and (c) a growing awareness of one's own understanding of racism. This study indicates that student nurses discussed racism as relevant to understanding good clinical practice for the benefit of patients and work-based wellbeing of staff. This recognition of the organizational nature of racism warrants nursing leaders and managers to include racism as a social determinant of health in the undergraduate and graduate curricula to educate the next generation of nursing about racism.

"It is a challenge to do it the right way": an interpretive description of caregivers' experiences in caring for migrant patients in Northern Sweden.

BACKGROUND: Experiences from nations with population diversity show extensive evidence on the need for cultural and linguistic competence in health care. In Sweden, despite the increasing diversity, only few studies have focused on challenges in cross-cultural care. The aim of this study was to explore the perspectives and experiences of caregivers in caring for migrant patients in Northern Sweden in order to understand the challenges they face and generate knowledge that could inform clinical practice. METHODS: We used an interpretive description approach, combining semi-structured interviews with 10 caregivers purposively selected and participant observation of patient-provider interactions in caring encounters. The interviews were transcribed and analyzed using thematic analysis approach. Field notes were also used to orient data collection and confirm or challenge the analysis. RESULTS: We found complex and intertwined challenges as indicated in the three themes we present including: the sociocultural diversity, the language barrier and the challenges migrants face in navigating through the Swedish health care system. The caregivers described migrants as a heterogeneous group coming from different geographical areas with varied social, cultural and religious affiliations, migration histories and statuses, all of which influenced the health care encounter, whether providing or receiving. Participants also described language as a major barrier to effective provision and use of health services. Meanwhile, they expressed concern over the use of interpreters in the triad communication and over the difficulties encountered by migrants in navigating through the Swedish health care system. CONCLUSIONS: The study illuminates complex challenges facing health care providers caring for migrant populations and highlights the need for multifaceted approaches to improve the delivery and receipt of care. The policy implications of these challenges are discussed in relation to the need to (a) adapt care to the individual needs, (b) translate key documents and messages in formats and languages accessible and acceptable to migrants, (c) train interpreters and enhance caregivers' contextual understanding of migrant groups and their needs, (d) and improve migrants' health literacy through strategies such as community based educational outreach.

Mother's perceptions and experiences of infant feeding within a community-based peer counselling intervention in South Africa.

Exclusive breastfeeding (EBF) has the potential to significantly reduce infant mortality, but is frequently not practiced in low-income settings where infants are vulnerable to malnutrition and infections including human immunodeficiency virus (HIV). This study explores mothers' experiences of infant feeding after receiving peer counselling promoting exclusive breast or formula feeding. This qualitative study was embedded in a cluster randomized peer counselling intervention trial in South Africa that aimed to evaluate the effect of peer counselling on EBF. Participants were selected from the three districts that were part of the trial reflecting different socio-economic conditions, rural-urban locations and HIV prevalence rates. Seventeen HIV-positive and -negative mothers allocated to intervention clusters were recruited. Despite perceived health and economic benefits of breastfeeding, several barriers to EBF remained, which contributed to a preference for mixed feeding. The understanding of the promotional message of 'exclusive' feeding was limited to 'not mixing two milks': breast or formula and did not address early introduction of foods and other liquids. Further, a crying infant or an infant who did not sleep at night were given as strong reasons for introducing semi-solid foods as early as 1 month. In addition, the need to adhere to the cultural practice of 'cleansing' and the knowledge that this practice is not compatible with EBF appeared to promote the decision to formula feed in HIV-positive mothers. Efforts to reduce barriers to EBF need to be intensified and further take into account the strong cultural beliefs that promote mixed feeding.

Ethnic, racial and regional inequalities in access to COVID-19 vaccine, testing and hospitalization: Implications for eradication of the pandemic.

The COVID-19 pandemic has made visible inequalities as exemplified by unequal access to COVID-19 vaccine across and within countries; inequalities that are also apparent in rates of testing, disease, hospitalization and death from COVID-19 along class, ethnic and racial lines. For a global pandemic such as the COVID-19 to be effectively addressed, there is a need to reflect on the entrenched and structural inequalities within and between countries. While many countries in the global north have acquired more vaccines than they may need, in the global south many have very limited access. While countries in the global north had largely vaccinated their populations by 2022, those in the global south may not even complete vaccinating 70% of their population to enable them reach the so-called herd immunity by 2024. Even in the global north where vaccines are available, ethnic, racialized and poor working classes are disproportionately affected in terms of disproportionately low rates of infection and death. This paper explores the socio-economic and political structural factors that have created and maintain these disparities. In particular we sketch the role of neoliberal developments in deregulating and financializing the system, vaccine hoarding, patent protection and how this contributes to maintaining and widening disparities in access to COVID-19 vaccine and medication.

Conceptualizing impact in community-based participatory action research to engage communities in end-of-life issues.

Background: A health promotion approach to end-of-life (EoL) care is gaining traction internationally. However, there is a lack of evaluations of the impact of this approach, particularly regarding community-based initiatives. Conceptualizations of impact in participatory action research (PAR) may contribute to understanding ways in which impact can be investigated in community-based health promotion approaches to EoL issues. We aim to investigate impact and the process of impact development in our community-based PAR project, Studio DöBra, a Swedish health promotion initiative to engage communities in EoL issues. Methods: We do this through a qualitative framework analysis expanding on Banks et al.'s theory of co-impact in PAR, based on longitudinal empirical data of Studio DöBra. Studio DöBra was developed in partnership with a range of community organizations and engaged children (9 years old) and older adults (most 80+) with topics related to dying, death, and loss through arts activities. The analyzed empirical data reflect the perspectives of community-partners and academic partners from interviews and meetings spanning 4.5 years. Findings: We present a model of impact development consisting of impact on individual and group development, action-oriented impact, and strategy-oriented impact; ways they relate to and evolve from one another; and how they may be affected by contextual influences. Conclusion: Besides contributing to conceptualizations of impact in PAR, findings contribute a community perspective to the limited literature investigating the impact of health promotion initiatives related to EoL issues.

From fear to fight: Patients experiences of early mobilization in intensive care. A qualitative interview study.

Introduction: Early mobilization (EM) in intensive care is frequently used to prevent physical and psychological complications, with promising results. However, the patient´s perception of EM has been sparsely investigated. Pe: To investigate the experience of EM in patients treated in intensive care. Md: Nineteen former patients who had been treated in intensive care were interviewed. The interviews were analyzed using qualitative, inductive content analysis. Rs: The analysis resulted in three categories; 1) Facing the impossible - a too demanding situation; 2) Struggling successfully on the way back; and 3) Need of having dedicated supporters. Con: A considerable variety of experiences of EM were described in this study, both negative and positive. Prominent features were that pleasant emotions and great physical effort occurred simultaneously and that interaction and cooperation with the caregivers was paramount. To regain independence was another prominent feature, with EM considered to be of great importance in the recovery process. Moving to an upright position and ambulating appears to be beneficial to both body and mind. EM should therefore be among the first priorities in intensive care. EM should be practiced with respect and support, while encouraging and challenging the patient to strive for independence.

Play Elements as Mechanisms in Intergenerational Arts Activities to Support Community Engagement with End-of-Life Issues.

Talking about dying, death, and loss may be difficult. Arts offer alternative ways of engaging with end-of-life (EoL) issues, but little is known about the means through which this occurs. In this article, we aim to explore mechanisms in arts activities that support community engagement with EoL issues, based on the community-based participatory action research project Studio DöBra. Studio DöBra was developed to support community engagement with EoL issues through intergenerational arts workshops involving community partners, children, and older adults. Initial analysis with community partners indicated the importance of play elements in arts activities. Continued analysis was therefore abductive, using play theory and qualitative data from Studio DöBra arts activities. Through iterative examination of theory and data, we modified play theory as we identified mechanisms supporting community engagement with EoL issues in arts activities. Findings can contribute to theory-building that can inform arts activities supporting community engagement with EoL issues.

"Just Throw It Behind You and Just Keep Going": Emotional Labor when Ethnic Minority Healthcare Staff Encounter Racism in Healthcare.

Encountering racism is burdensome and meeting it in a healthcare setting is no exception. This paper is part of a larger study that focused on understanding and addressing racism in healthcare in Sweden. In the paper, we draw on interviews with 12 ethnic minority healthcare staff who described how they managed emotional labor in their encounters with racism at their workplace. Data were analyzed using thematic analysis. The analysis revealed that experienced emotional labor arises from two main reasons. The first is the concern and fear that ethnic minority healthcare staff have of adverse consequences for their employment should they be seen engaged in discussing racism. The second concerns the ethical dilemmas when taking care of racist patients since healthcare staff are bound by a duty of providing equal care for all patients as expressed in healthcare institutional regulations. Strategies to manage emotional labor described by the staff include working harder to prove their competence and faking, blocking or hiding their emotions when they encounter racism. The emotional labor implied by these strategies could be intense or traumatizing as indicated by some staff members, and can therefore have negative effects on health. Given that discussions around racism are silenced, it is paramount to create space where racism can be safely discussed and to develop a safe healthcare environment for the benefit of staff and patients.

Ambivalence, silence and gender differences in church leaders' HIV-prevention messages to young people in KwaZulu-Natal, South Africa.

A series of semi-structured interviews on HIV prevention were conducted with South African clergy with pastoral and liturgical responsibilities from the Roman Catholic Church, the Lutheran Church and the Assemblies of God. The interviews were tape-recorded, transcribed verbatim and analysed by interpretive descriptive analysis. Three themes indicative of church leaders' approach to HIV prevention among youth emerged: dilemmas in breaking the silence on HIV and AIDS; ambivalent HIV-prevention messages from church leaders to young people; and gender differences in HIV-prevention messages. While church leaders had taken steps to overcome the stigma, the dilemmas of balancing theological understanding with resistance from their congregations presented a complex scenario. Ambivalence to HIV prevention concerned whose responsibility it was to educate young people about HIV; talking about sexuality in public; pre-marital abstinence and condom use; and resistance from congregation members towards HIV prevention. Finally, findings indicated a discrepancy between church leaders' belief in gender equality and the HIV-prevention messages they verbalised, which appears to burden girls.