RESUMO
People living with multimorbidity (PLWMM) have multiple needs and require long-term personalised care, which necessitates an integrated people-centred approach to healthcare. However, people-centred care may risk being a buzzword in global health and cannot be achieved unless we consider and prioritise the lived experience of the people themselves. This study captures the lived experiences of PLWMM in low- and middle-income countries (LMICs) by exploring their perspectives, experiences, and aspirations.We analysed 50 semi-structured interview responses from 10 LMICs across three regions-South Asia, Latin America, and Western Africa-using an interpretative phenomenological analysis approach.The bodily, social, and system experiences of illness by respondents were multidirectional and interactive, and largely captured the complexity of living with multimorbidity. Despite expensive treatments, many experienced little improvements in their conditions and felt that healthcare was not tailored to their needs. Disease management involved multiple and fragmented healthcare providers with lack of guidance, resulting in repetitive procedures, loss of time, confusion, and frustration. Financial burden was exacerbated by lost productivity and extreme finance coping strategies, creating a vicious cycle. Against the backdrop of uncertainty and disruption due to illness, many demonstrated an ability to cope with their conditions and navigate the healthcare system. Respondents' priorities were reflective of their desire to return to a pre-illness way of life-resuming work, caring for family, and maintaining a sense of independence and normalcy despite illness. Respondents had a wide range of needs that required financial, health education, integrated care, and mental health support.In discussion with respondents on outcomes, it appeared that many have complementary views about what is important and relevant, which may differ from the outcomes established by clinicians and researchers. This knowledge needs to complement and be incorporated into existing research and treatment models to ensure healthcare remains focused on the human and our evolving needs.
Assuntos
Países em Desenvolvimento , Multimorbidade , Humanos , África Ocidental , Capacidades de Enfrentamento , Estresse FinanceiroRESUMO
In a global context, the pernicious effects of colonialism and coloniality are increasingly being recognised in many sectors. As a result, calls to reverse colonial aphasia and amnesia, and decolonise, are getting stronger. This raises a number of questions, particularly for entities that acted as agents of (previous) colonising countries and worked to further the progress of the colonial project: What does decolonisation mean for such historically colonial entities? How can they confront their (forgotten) arsonist past while addressing their current role in maintaining coloniality, at home and abroad? Given the embeddedness of many such entities in current global (power) structures of coloniality, do these entities really want change, and if so, how can such entities redefine their future to ensure that they are and remain 'decolonised'? We attempt to answer these questions, by reflecting on our efforts to think through and start the process of decolonisation at the Institute of Tropical Medicine (ITM) in Antwerp, Belgium. The overarching aim is to contribute to closing the gap in the literature when it comes to documenting practical efforts at decolonisation, particularly in contexts similar to ITM and to share our experience and engage with others who are undertaking or planning to undertake similar initiatives.
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Medicina Tropical , Humanos , Bélgica , ColonialismoRESUMO
BACKGROUND: Pre-existing racial/ethnic disparities in health, sustained by intersecting socio-economic and structural inequities, have widened due to the COVID-19 pandemic. Yet, little attention has been paid to the lived experiences of people in ethnic/racialised minority communities, and to the causes and effects underlying the COVID-19-related burden. This hinders tailored responses. This study explores Sub-Saharan African (SSA) communities' needs, perceptions, and experiences of the COVID-19 pandemic and its control measures in Antwerp (Belgium) in 2020. METHODS: This qualitative study using an interpretative ethnographical approach adopted an iterative and participatory methodology: a community advisory board advised on all stages of the research process. Interviews and a group discussion were conducted online, through telephone, and face-to-face. We analysed the data inductively using a thematic analytical approach. RESULTS: Our respondents, who mostly used social media for information, struggled with misinformation about the new virus and prevention measures. They reported to be vulnerable to misinformation about the origin of the pandemic, risk of infection with SARS-CoV-2, and the prevention measures. Not only did the epidemic affect SSA communities, but to a larger extent, the control strategies did-especially the lockdown. Respondents perceived the interaction of social factors (i.e. being migrants, being undocumented, having experienced racism and discrimination) and economic factors (i.e. working in temporary and precarious jobs, not being able to apply for unemployment benefit, crowded housing conditions) as increasing the burden of COVID-19 control measures. In turn, these experiences influenced people's perceptions and attitudes, and may have partially impaired them to follow some public health COVID-19 prevention guidelines. Despite these challenges, communities developed bottom-up initiatives to react quickly to the epidemic, including translation of prevention messages, food distribution, and online spiritual support. CONCLUSION: Pre-existing disparities influenced the perceptions of and attitudes towards COVID-19 and its control strategies among SSA communities. To better design support and control strategies targeted to specific groups, we need to not only involve communities and address their specific needs and concerns, but also build on their strengths and resilience. This will remain important in the context of widening disparities and future epidemics.
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COVID-19 , Humanos , COVID-19/epidemiologia , COVID-19/prevenção & controle , SARS-CoV-2 , Pandemias , Bélgica/epidemiologia , Controle de Doenças Transmissíveis , África Subsaariana/epidemiologiaRESUMO
BACKGROUND: In high income countries, racialized/ethnic minorities are disproportionally affected by COVID-19. Despite the established importance of community involvement in epidemic preparedness, we lack in-depth understanding of these communities' experiences with and responses to COVID-19. We explored information and prevention needs, coping mechanisms with COVID-19 control measures and their impact on lived experiences among selected racialized/ethnic minority communities. METHODS: This qualitative rapid assessment conducted in Antwerp/Belgium used an interpretative and participatory approach. We included migrant communities with geographic origins ranging from Sub-Saharan Africa, North-Africa to the Middle East, Orthodox Jewish communities and professional community workers. Data were collected between May 2020-May 2021 through key informant-, in-depth interviews and group discussions (N = 71). Transcripts were analyzed inductively, adopting a reflexive thematic approach. A community advisory board provided feedback throughout the research process. RESULTS: Participants indicated the need for tailored information in terms of language and timing. At the start of the epidemic, they perceived official public health messages as insufficient to reach all community members. Information sources included non-mainstream (social) media and media from home countries, hampering a nuanced understanding of virus transmission mechanisms and local and national protection measures. Participants felt the measures' most negative impact on their livelihoods (e.g. loss of income, disruption of social and immigration support). Economic insecurity triggered chronic stress and fears at individual and family level. High degrees of distrust in authorities and anticipated stigma were grounded in previously experienced racial and ethnic discrimination. Community-based initiatives mitigated this impact, ranging from disseminating translated and tailored information, providing individual support, and successfully reaching community members with complex needs (e.g. the elderly, digitally illiterate people, those with small social networks or irregular legal status). CONCLUSION: Study participants' narratives showed how coping with and responding to COVID-19 was strongly intertwined with socio-economic and ethnic/racial characteristics. This justifies conceptualizing COVID-19 a social disease. At the same time, communities demonstrated resilience in responding to these structural vulnerabilities. From a health equity perspective, we provide concrete policy recommendations grounded in insights into communities' structural vulnerabilities and resilience.
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COVID-19 , Idoso , Bélgica , COVID-19/prevenção & controle , Minorias Étnicas e Raciais , Etnicidade , Humanos , Grupos MinoritáriosRESUMO
HIV-related stigma and discrimination are recognized barriers to HIV prevention, testing and treatment among people of Sub-Saharan African descent (SSA) origin living in Belgium, but insights into HIV related-stigma mechanisms and outcomes are lacking for this population with high HIV prevalence. Guided by Earnshaw and Chaudoir's stigma framework (2009), we conducted this qualitative study using 10 focus-groups with 76 SSA community members and 20 in-depth interviews with SSA descendants living with HIV to explore specific HIV-stigma mechanisms and outcomes and underlying drivers. Inductive and deductive thematic analysis showed high degrees of stigma among SSA communities driven by fear of HIV acquisition and misconceptions in a migration context, negatively affecting SSA descendants living with HIV. The results allowed for contextualization of the framework: At the community level, prejudices and stereotypes were major stigma mechanisms, while physical distancing, gossips, sexual rejection, violence and increased HIV prevalence emerged as stigma outcomes. Among SSA descendants living with HIV, enacted, anticipated and internalized stigmas were validated as stigma mechanisms, with witnessed stigma as an additional mechanism. Self-isolation, community avoidance and low utilization of non-HIV specialized healthcare were additional outcomes. These results are relevant for tailoring interventions to reduce HIV-related stigma.
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Síndrome da Imunodeficiência Adquirida , Infecções por HIV , África Subsaariana/epidemiologia , Bélgica/epidemiologia , Infecções por HIV/epidemiologia , Humanos , Estigma SocialRESUMO
This cross-sectional survey explored the quality of life in 505 people living with HIV in Belgium. Several domains of quality of life were impaired: 26% had been diagnosed with depression and 43% had weak social support. HIV-related stigma is still widespread, with 49% believing most people with HIV are rejected and 65% having experienced discrimination due to HIV. The impact of HIV was limited on professional life, but 40% experienced a negative impact on life satisfaction and 41% a negative impact on sexual life. For several domains, people with a recent diagnosis of HIV and long-term survivors had significantly worse scores. This survey also uncovered strengths of people living with HIV, such as positive coping and HIV self-image. Expanding the scope of quality of life in people living with HIV may provide a more complete picture of relevant life domains that may be impacted by living with HIV, but this needs further validation.
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Adaptação Psicológica , Terapia Antirretroviral de Alta Atividade , Infecções por HIV/psicologia , Qualidade de Vida/psicologia , Estigma Social , Adolescente , Adulto , Idoso , Bélgica/epidemiologia , Estudos Transversais , Discriminação Psicológica , Infecções por HIV/tratamento farmacológico , Humanos , Masculino , Saúde Mental , Pessoa de Meia-Idade , Autoimagem , Comportamento Sexual , Apoio Social , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: The importance of community involvement in the response against disease outbreaks has been well established. However, we lack insights into local communities' experiences in coping with the current COVID-19 pandemic. This study explored both the impact of, and response to, COVID-19 within the Orthodox Jewish communities of Antwerp (Belgium) during the first lockdown period (March 2020 - May 2020). METHODS: We conducted an explorative qualitative study using a participatory approach. First, we performed a community mapping to identify relevant stakeholders. Through the active involvement of a community advisory board and based on qualitative interviews with key-informants and community members, we elicited lived experiences, attitudes, and perceptions towards COVID-19. Interviews were conducted both face-to-face and using online web conferencing technology. Data were analyzed inductively according to the principles of thematic analysis. RESULTS: Government-issued outbreak control measures presented context-specific challenges to the Orthodox Jewish communities in Antwerp. They related mainly to the remote organization of religious life, and practicing physical distancing in socially and culturally strongly connected communities. Existing community resources were rapidly mobilized to adapt to the outbreak and to self-organize response initiatives within communities. The active involvement of community and religious leaders in risk communication proved to be of great importance to facilitate the coverage and uptake of pandemic control measures while protecting essential community values and traditions. Creating bottom-up and community-adapted communication strategies, including addressing language barriers and involving Rabbis in the dissemination of prevention messages, fostered a feeling of trust in government's response measures. However, unmet information and prevention needs were also identified, such as the need for inclusive communication by public authorities and the need to mitigate the negative effects of stigmatization. CONCLUSION: The experiences of Orthodox Jewish communities in Antwerp demonstrate a valuable example of a feasible community-centered approach to health emergencies. Increasing the engagement of communities in local decision-making and governance structures remains a key strategy to respond to unmet information and prevention needs.