RESUMEN
PURPOSE: Minority World countries have often been involved in supporting services for people with communication disability (PWCD) in Majority World countries. In East Africa, this support has historically involved speech-language pathologists (SLPs) from Minority World countries providing therapy; later evolving to include partnerships between Majority and Minority World organisations providing education, training, and support-sometimes with the aim of increasing service sustainability. Our objective is to provide an overview of how partnerships for the goals (SDG 17) has been realised for speech-language pathology services in three East African countries (Uganda, Kenya, and Rwanda). For SLPs, we consider training and education, research opportunities, and the development of the profession. For PWCD, we consider the equity of services. RESULT: We identify key challenges and successes of UK/East African partnerships, identifying steps for improvement for robust speech-language pathology partnerships. CONCLUSION: We suggest three key approaches for better-designed partnerships: (1) Improve accessibility, by expanding services to rural areas and coordinating fee setting. (2) Ensure local stakeholders and professionals are included in meaningful and agreed ways. (3) Ensure partnerships complement existing services and are culturally appropriate. These approaches support related goals to achieve better services for PWCD. This commentary paper focuses on good health and well-being (SDG 3); quality education (SDG 4); decent work and economic growth (SDG 8); industry, innovation, and infrastructure (SDG 9); reduced inequalities (SDG 10); partnerships for the goals (SDG 17).
Asunto(s)
Trastornos de la Comunicación , Desarrollo Sostenible , Humanos , Kenia , Rwanda , Uganda , Salud Global , Trastornos de la Comunicación/terapiaRESUMEN
Providing equitable support for people experiencing communication disability (CD) globally is a historical and contemporary challenge for the speech-language therapy profession. A group of speech-language therapists (SLTs) with ongoing and sustained experiences in Majority and Minority World contexts participated in five virtual meetings in 2021. The aim of these meetings was to develop provocative statements that might spur a global discussion among individuals and organisations that support people experiencing CD. The following questions were discussed: What is our vision for the future of the profession globally? What are the global challenges around access to speech-language therapy services?Four main themes emerged: (1) the need to centre people experiencing CD as the focal point of services, (2) participation, (3) equity and (4) community. The themes relate to the need for a process of de-imperialism in the profession. Suggestions were made to develop more suitable terminology and to establish a global framework that promotes more equitable access to communication services. We seek the adoption of approaches that focus on reciprocal global engagement for capacity strengthening. Alternative models of culturally sustaining and equitable service delivery are needed to create impact for people experiencing CD, and their families worldwide.Contribution: Provocative statements were developed to prompt global conversations among speech-language therapy professionals and associations. We encourage readers to consider the questions posed, share their viewpoints and initiate positive change towards a global strategy.
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Terapia del Lenguaje , Habla , Humanos , Logopedia , Comunicación , VestuarioRESUMEN
BACKGROUND: News media create a sense-making narrative, shaping, reflecting and enforcing cultural ideas and experiences. Reportage of COVID-related death and bereavement illuminates public perceptions of, and responses to, the COVID-19 pandemic. AIM: We aimed to explore British newspaper representations of 'saying goodbye' before and after a COVID-related death and consider clinical implications. DESIGN: Document analysis of UK online newspaper articles published during 2 week-long periods in March-April 2020. DATA SOURCES: The seven most-read online newspapers were searched: The Guardian, The Daily Mail, The Telegraph, The Mirror, The Sun, The Times and The Metro. Fifty-five articles discussed bereavement after a human death from COVID-19, published during 18/03-24/03/2020 (the UK's transition into lockdown) or 08/04-14/04/2020 (the UK peak of the pandemic's first wave). RESULTS: The act of 'saying goodbye' (before, during and after death) was central to media representations of COVID bereavement, represented as inherently important and profoundly disrupted. Bedside access was portrayed as restricted, variable and uncertain, with families begging or bargaining for contact. Video-link goodbyes were described with ambivalence. Patients were portrayed as 'dying alone' regardless of clinician presence. Funerals were portrayed as travesties and grieving alone as unnatural. Articles focused on what was forbidden and offered little practical guidance. CONCLUSION: Newspapers portrayed COVID-19 as disruptive to rituals of 'saying goodbye' before, during and after death. Adaptations were presented as insufficient attempts to ameliorate tragic situations. More nuanced and supportive reporting is recommended. Clinicians and other professionals supporting the bereaved can play an important role in offering alternative narratives.
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COVID-19 , Cuidado Terminal , Control de Enfermedades Transmisibles , Humanos , Pandemias , SARS-CoV-2RESUMEN
BACKGROUND: To inform clinical practice and policy, it is essential to understand the lived experience of health and social care policies, including restricted visitation policies towards the end of life. AIM: To explore the views and experiences of Twitter social media users who reported that a relative, friend or acquaintance died of COVID-19 without a family member/friend present. DESIGN: Qualitative content analysis of English-language tweets. DATA SOURCES: Twitter data collected 7-20th April 2020. A bespoke software system harvested selected publicly-available tweets from the Twitter application programming interface. After filtering we hand-screened tweets to include only those referring to a relative, friend or acquaintance who died alone of COVID-19. Data were analysed using thematic content analysis. RESULTS: 9328 tweets were hand-screened; 196 were included. Twitter users expressed sadness, despair, hopelessness and anger about their experience and loss. Saying goodbye via video-conferencing technology was viewed ambivalently. Clinicians' presence during a death was little consolation. Anger, frustration and blame were directed at governments' inaction/policies or the public. The sadness of not being able to say goodbye as wished was compounded by lack of social support and disrupted after-death rituals. Users expressed a sense of political neglect/mistreatment alongside calls for action. They also used the platform to reinforce public health messages, express condolences and pay tribute. CONCLUSION: Twitter was used for collective mourning and support and to promote public health messaging. End-of-life care providers should facilitate and optimise contact with loved ones, even when strict visitation policies are necessary, and provide proactive bereavement support.
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COVID-19 , Medios de Comunicación Sociales , Ira , Familia , Humanos , SARS-CoV-2 , TristezaRESUMEN
The COVID-19 pandemic has been followed intensely by the global news media, with deaths and bereavement a major focus. The media reflect and reinforce cultural conventions and sense-making, offering a lens which shapes personal experiences and attitudes. How COVID-19 bereavement is reported therefore has important societal implications. We aimed to explore the reportage and portrayal of COVID-19 related bereavement in the top seven most-read British online newspapers during two week-long periods in March and April 2020. We conducted a qualitative document analysis of all articles that described grief or bereavement after a death from COVID-19. Analysis of 55 articles was informed by critical discourse analysis and Terror Management Theory, which describes a psychological conflict arising between the realisation that death is inevitable and largely unpredictable and the human need for self-preservation. We identified three main narratives: (1) fear of an uncontrollable, unknown new virus and its uncertain consequences-associated with sensationalist language and a sense of helplessness and confusion; (2) managing uncertainty and fear via prediction of the future and calls for behaviour change, associated with use of war metaphors; and (3) mourning and loss narratives that paid respect to the deceased and gave voice to grief, associated with euphemistic or glorifying language ('passed away', 'heroes'). Accounts of death and grief were largely homogenous, with bereavement due to COVID-19 presented as a series of tragedies, and there was limited practical advice about what to do if a loved one became seriously ill or died. Reporting reflected the tension between focusing on existential threat and the need to retreat from or attempt to control that threat. While the impact of this reporting on the public is unknown, a more nuanced approach is recommended to better support those bereaved by COVID-19.
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Aflicción , COVID-19 , COVID-19/epidemiología , Miedo , Humanos , Periódicos como Asunto , Pandemias , SARS-CoV-2/aislamiento & purificación , Reino Unido/epidemiologíaRESUMEN
Deaths due to COVID-19 are associated with risk factors which can lead to prolonged grief disorder, post-traumatic stress, and other poor bereavement outcomes among relatives, as well as moral injury and distress in frontline staff. Here we review relevant research evidence and provide evidence-based recommendations and resources for hospital clinicians to mitigate poor bereavement outcomes and support staff. For relatives, bereavement risk factors include dying in an intensive care unit, severe breathlessness, patient isolation or restricted access, significant patient and family emotional distress, and disruption to relatives' social support networks. Recommendations include advance care planning; proactive, sensitive, and regular communication with family members alongside accurate information provision; enabling family members to say goodbye in person where possible; supporting virtual communication; providing excellent symptom management and emotional and spiritual support; and providing and/or sign-posting to bereavement services. To mitigate effects of this emotionally challenging work on staff, we recommend an organizational and systemic approach which includes access to informal and professional support.