Tackling TB together : a community participatory study of the socio-cultural factors influencing an understanding of TB within the Somali community in Sheffield

This report presents the main findings from a study which sought to gain insight into the sociocultural influences on how TB is perceived within the Somali community and how these perspectives affect the prevention, diagnosis and treatment of the disease. The study also gained an understanding of healthcare practitioners’ perceptions of TB among the Somali community and their experiences of providing TB services to Somalis. A community participatory research approach was used which involved Somali community researchers and healthcare practitioners working in partnership with university researchers to design and conduct the research with the support of a community-based project advisory group. Data were collected by means of interviews and focus groups with Somali community leaders, patients suffering from TB, members of the wider Somali community, healthcare practitioners providing TB services and primary care practitioners. The findings identified a general awareness of TB among the Somali community in terms of the signs and symptoms of pulmonary TB, its treatment and prognosis. There was less understanding of nonpulmonary TB among Somali participants and some healthcare practitioners. Many Somalis lacked detailed understanding of how the disease was spread. Established community beliefs, for example that TB was a hereditary disease, or that it could be acquired by sharing eating utensils proved difficult for healthcare practitioners to challenge. Somali people spoke of how TB was perceived to be stigmatised within the Somali community. Whereas a person suffering from TB would generally share the diagnosis with their immediate family, concerns remained about the possibility of being ostracised by members of the wider community if knowledge of the disease became more widespread. This carried implications for contact tracing. However, attitudes towards TB were changing. Community leaders emphasised that as people became more knowledgeable about TB then the stigma would diminish but it was acknowledged that deeply held beliefs about the causes and consequences of TB would take some time to change. A number of barriers that hinder Somali people accessing TB services were identified. Some, like stigma, are embedded in cultural beliefs or are linked to socio-cultural activities such as chewing khat. A lack of trust and confidence in healthcare providers, especially some GPs arose from the protracted time it often took to diagnose TB. Healthcare practitioners lack of understanding of the Somali community and language barriers also hindered the uptake of primary care services. Several avenues through which culturally appropriate strategies targeted at minimising the spread of the disease, ensuring timely diagnosis and effective management of TB were identified. These are captured in the recommendations arising from the study which identify the need for a more proactive approach to raising awareness of TB within the Somali community and among primary care practitioners. Interpretations of TB are culturally bound and in order for TB services the better to meet the needs of the Somali community there is a need to develop greater awareness among healthcare practitioners of the needs of Somali patients and overcome linguistic barriers through improved access to interpreting services, especially in primary care

The meaning and consequences of tuberculosis among Somali people in the United Kingdom

Aim. To ascertain the socio-cultural meaning and consequences of tuberculosis among people of Somali origin living in the UK. Background. In countries where treatment has not been readily available, tuberculosis has become highly stigmatized. Research in Somalia has documented the stigma and social isolation associated with tuberculosis which acts as a powerful deterrent to sufferers acknowledging their illness. The Somali community in the UK is diverse and dynamic: little is known about how tuberculosis is understood, or how stigma is articulated and experienced post-migration. Design. A focused ethnography was undertaken. Method. A total of 48 individual interviews were undertaken in 2008–2009 with community leaders, Somali community members and tuberculosis patients to explore the social meaning of tuberculosis and perceived consequences of the disease. Eight focus groups were undertaken involving 56 participants. Vignettes concerning tuberculosis were used to prompt discussion of community norms and socio-cultural constructions of tuberculosis. Data were analysed using the ‘Framework’ approach. Findings. Most participants were familiar with tuberculosis, its characteristics and treatment. However, many participants held misconceptions about how the disease spread and its prognosis. Tuberculosis was perceived as a stigmatizing disease. Somalis with tuberculosis were considered likely to experience felt and enacted stigma with fear of discrimination in the form of social isolation influencing the extent to which people with tuberculosis disclosed their condition. Conclusion. Nurses should understand the socio-cultural meaning and consequences of tuberculosis for Somalis to educate the community through public health initiatives and support patients and their families

Experiences of the diagnosis and management of tuberculosis: a focused ethnography of Somali patients and healthcare professionals in the UK

Aim. To explore experiences of the diagnosis and management of tuberculosis from the perspective of Somali patients and healthcare professionals involved in their care. Background. The Somali population has the third highest incidence of tuberculosis occurring in persons born outside the UK. Tuberculosis is a disease with sociocultural as well as physical consequences. Nurses should understand how the disease is experienced by people from different ethnic backgrounds to implement strategies for prevention and management of tuberculosis. Design. A focused ethnography. Method. Individual interviews with 14 Somali patients and 18 healthcare professionals with experience of providing care to Somalis were undertaken in 2008–2009. Interviews explored the patient experience from onset of symptoms to completion of treatment. Data were analysed using Framework approach. Findings. Despite presenting in primary care early,patients experienced diagnostic delays due to low clinical suspicion of tuberculosis among general practitioners. Although patients reported felt and enacted stigma,it did not adversely affect concordance with treatment. Patients were reticent about sharing their diagnosis among wider networks due to perceived stigma. Psychological support from families and specialist nurses was valued highly. Healthcare professionals perceived that stigmatization of tuberculosis was diminishing among Somalis leading to improved management of tuberculosis. Patients and healthcare professionals raised concerns about the longer term physical and psychosocial implications of tuberculosis once treatment was completed. Conclusion. Nurses have a role in promoting early presentation,timely diagnosis, and treatment adherence through supporting Somali patients and raising awareness of the disease among primary care practitioners

Enhancing the quality of published research on ethnicity and health: is journal guidance feasible and useful?

Researching ethnicity and health presents significant ethical, conceptual and methodological challenges. While the potential contribution of research evidence to tackling ethnic inequalities in health is recognised, there are widespread concerns regarding the ethical and scientific rigour of much of this research and its potential to do more harm than good. The introduction of guidance documents at critical points in the research cycle - including within the peer-review publication process - might be one way to enhance the quality of such research. This article reports the findings from the piloting of a guidance checklist within an international journal. The checklist was positively received by authors and reviewers, the majority of whom reported it to be comprehensible, relevant and potentially useful in improving the quality of published research. However, participation in the pilot was poor, suggesting that the impact of such a checklist would be very limited unless it was perceived to be an aid to authors and reviewers, rather than an additional burden, and was strongly promoted by journal editors

Capacity development for knowledge translation : evaluation of an experiential approach through secondment opportunities

Background - Experiential approaches to skills development using secondment models are shown to benefit healthcare organisations more generally, but little is known about the potential of this approach to develop capacity for knowledge translation (KT). Aim - To evaluate the success of KT capacity development secondments from the perspective of multiple stakeholders. Methods - A pluralistic evaluation design was used. Data were collected during 2011-12 using focus group and individual interviews with 14 clinical and academic secondees, and five managers from host and seconding organisations to gain insight into participants’ perceptions of the success of secondments and the criteria by which they judged success. Six After Action Reviews were undertaken with KT project teams to explore participants’ perceptions of the contribution secondees made to KT projects. Semi-structured interviews were undertaken with three healthcare managers on completion of projects to explore the impact of secondments on the organisation, staff and patients. Qualitative content analysis was used to identify criteria for success. The criteria provided a framework through which the overall success of secondments could be judged. Results - Six criteria for judging the success of the secondments at individual, team and organisation level were identified: KT skills development, effective workload management, team working, achieving KT objectives, enhanced care delivery, enhanced education delivery. Benefits to the individual, KT team, seconding and host organisations were identified. Implications for practice - Hosting teams should provide mentorship support to secondees, and be flexible to accommodate secondees’ needs as team members. On-going support of managers from seconding organisations is needed to maximise the benefits to individual secondees and the organisation. Conclusions - Experiential approaches to KT capacity development using secondments can benefit individual secondees, project teams, seconding and host organisations.</p

Can the quality of social research on ethnicity be improved through the introduction of guidance? Findings from a research commissioning pilot exercise

As the volume of UK social research addressing ethnicity grows, so too do concerns regarding the ethical and scientific rigour of this research domain and its potential to do more harm than good. The establishment of standards and principles and the introduction of guidance documents at critical points within the research cycle might be one way to enhance the quality of such research. This article reports the findings from the piloting of a guidance document within the research commissioning process of a major funder of UK social research. The guidance document was positively received by researchers, the majority of whom reported it to be comprehensible, relevant and potentially useful in improving the quality of research proposals. However, a review of the submitted proposals suggested the guidance had had little impact on practice. While guidance may have a role to play, it will need to be strongly promoted by commissioners and other gatekeepers. Findings also suggest the possibility that guidance may discourage some researchers from engaging with ethnicity if it raises problems without solutions; highlighting the need for complementary investments in research capacity development in this area

Exploring factors that influence the spread and sustainability of a dysphagia innovation: an instrumental case study

Background: Swallowing difficulties challenge patient safety due to the increased risk of malnutrition, dehydration and aspiration pneumonia. A theoretically driven study was undertaken to examine the spread and sustainability of a locally developed innovation that involved using the Inter-Professional Dysphagia Framework to structure education for the workforce. A conceptual framework with 3 spread strategies (hierarchical control, participatory adaptation and facilitated evolution) was blended with a processual approach to sustaining organisational change. The aim was to understand the processes, mechanism and outcomes associated with the spread and sustainability of this safety initiative. Methods: An instrumental case study, prospectively tracked a dysphagia innovation for 34 months (April 2011 to January 2014) in a large health care organisation in England. A train-the-trainer intervention (as participatory adaptation) was deployed on care pathways for stroke and fractured neck of femur. Data were collected at the organisational and clinical level through interviews (n = 30) and document review. The coding frame combined the processual approach with the spread mechanisms. Pre-determined outcomes included the number of staff trained about dysphagia and impact related to changes in practice. Results: The features and processes associated with hierarchical control and participatory adaptation were identified. Leadership, critical junctures, temporality and making the innovation routine were aspects of hierarchical control. Participatory adaptation was evident on the care pathways through stakeholder responses, workload and resource pressures. Six of the 25 ward based trainers cascaded the dysphagia training. The expected outcomes were achieved when the top-down mandate (hierarchical control) was supplemented by local engagement and support (participatory adaptation). Conclusions: Frameworks for spread and sustainability were combined to create a ‘small theory’ that described the interventions, the processes and desired outcomes a priori. This novel methodological approach confirmed what is known about spread and sustainability, highlighted the particularity of change and offered new insights into the factors associated with hierarchical control and participatory adaptation. The findings illustrate the dualities of organisational change as universal and context specific; as particular and amendable to theoretical generalisation. Appreciating these dualities may contribute to understanding why many innovations fail to become routine

Exploring scale-up, spread, and sustainability: an instrumental case study tracing an innovation to enhance dysphagia care

Background Adoption, adaptation, scale-up, spread, and sustainability are ill-defined, undertheorised, and little-researched implementation science concepts. An instrumental case study will track the adoption and adaptation, or not, of a locally developed innovation about dysphagia as a patient safety issue. The case study will examine a conceptual framework with a continuum of spread comprising hierarchical control or ‘making it happen’, participatory adaptation or ‘help it happen’, and facilitated evolution or ‘let it happen’. Methods This case study is a prospective, longitudinal design using mixed methods. The fifteen-month (October 2012 to December 2013) instrumental case study is set in large, healthcare organisation in England. The innovation refers to introducing a nationally recognised, inter-disciplinary dysphagia competency framework to guide workforce development about fundamental aspects of care. Adoption and adaptation will be examined at an organisational level and along two, contrasting care pathways: stroke and fractured neck of femur. A number of educational interventions will be deployed, including training a cadre of trainers to cascade the essentials of dysphagia management and developing a Dysphagia Toolkit as a learning resource. Mixed methods will be used to investigate scale-up, spread, and sustainability in acute and community settings. A purposive sample of senior managers and clinical leaders will be interviewed to identify path dependency or the context specific particularities of implementation. A pre- and post-evaluation, using mealtime observations and a survey, will investigate the learning effect on staff adherence to patient specific dysphagia recommendations and attitudes towards dysphagia, respectively. Official documents and an ethnographic field journal allow critical junctures, temporal aspects and confounding factors to be explored. Discussion Researching spread and sustainability presents methodological and practical challenges. These include fidelity, adaptation latitude, time, and organisational changes. An instrumental case study will allow these confounding factors to be tracked over time and in place. The case study is underpinned by, and will test a conceptual framework about spread, to explore theoretical generalizability

Loss of research and operational equipment in Antarctica: Balancing scientific advances with environmental impact

Antarctica has been subject to widespread, long-term and on-going human activity since the establishment of permanent research stations became common in the 1950s. Equipment may become intentionally or inadvertently lost in Antarctic marine and terrestrial environments as a result of scientific research and associated support activities, but this has been poorly quantified to date. Here we report the quantity and nature of equipment lost by the UK's national operator in Antarctica, the British Antarctic Survey (BAS). Over the 15-year study period (2005–2019), 125 incidents of loss were reported, with c. 23 tonnes of equipment lost of which 18% by mass was considered hazardous. The geographical distribution of lost equipment was widespread across the BAS operational footprint. However, impacts are considered low compared to those associated with research station infrastructure establishment and operation. To reduce environmental impact overall, we recommend that, where possible, better use is made of existing research station capacity to facilitate field research, thereby reducing the need for construction of new infrastructure and the generation of associated impacts. Furthermore, to facilitate reporting on the state of the Antarctic environment, we recommend that national Antarctic programmes reinvigorate efforts to comply with Antarctic Treaty System requirements to actively record the locations of past activities and make available details of lost equipment. In a wider context, analogous reporting is also encouraged in other pristine areas subject to new research activities, including in other remote Earth environments and on extra-terrestrial bodies