LIVING WITH SICKLE CELL OR BETA THALASSAEMIA TRAIT: IMPLICATIONS FOR IDENTITY AND SOCIAL LIFE
Lead Research Organisation:
University of York
Department Name: Health Science
Abstract
Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
Organisations
Publications
Chattoo S
(2022)
How can sociology help address a global health challenge?
in Futurum Careers
Chattoo S
(2018)
Inherited blood disorders, genetic risk and global public health: framing 'birth defects' as preventable in India.
in Anthropology & medicine
Dyson, SM
(2013)
Achieve equity in access to sickle cell services
Karl Atkin (Author)
(2013)
Screening for sickle cell and thalassaemia : what does the evidence tell us?
Simon Dyson (Speaker)
(2012)
Ethnicity and haemoglobinopathies
Unnithan M
(2023)
'Only parents can understand the problems and needs of children with thalassaemia': parental activism for thalassaemia care in Northern India.
in Anthropology & medicine
| Description | This study offers an in-depth understanding of how individuals make sense of carrying a trait for sickle cell and thalassaemia (potentially serious, inherited blood disorders), within the context of their broader family and social relationships. An important focus of our research is to link changes in health policy (such as, newborn and antenatal screening) to individual experience and shifting cultural values related to 'genetic risk' and the use of new reproductive technologies. We bridge these two worlds, using the concepts and methods from social sciences. The following issues are highlighted through our findings: ? A trait (for a recessive gene) can remain invisible in families for generations. Hence, despite the higher incidence in particular ethnic groups, individuals/families might have little or no experiential knowledge about sickle cell and thalassaemia disorders. ? In the language of healthcare professionals and educational materials, genetic risk appears as a fixed, visible attribute of being a carrier. The risk of passing on/inheriting the gene can be easily quantified and once communicated, will not change. In contrast, carriers understand risk as unfolding and changing in meaning over time, within the context of significant relationships, experiential knowledge, professional communication as well as historical and cultural factors. ? Provision of appropriate counselling for adult carriers remains largely confined to antenatal care for women/couples identified as being 'at risk' for having a baby with these blood disorders. This leaves many anxious carriers to fend for information on their own, with little or no professional support. ? Voluntary sector organisations provide excellent, easily accessible, personalised support to carriers who might have unaddressed questions triggered by personal circumstances. This support is being threatened by reductions in the NHS funds available to them. ? The idea of a 'healthy carrier', endorsed by the NHS in the policy and educational literature, is a caricature. It fails to acknowledge and address the potential emotional, physical and social impact of a carrier 'diagnosis'. Some carriers might experience symptoms; be anxious about their baby/child who has been identified as a carrier; or indeed the implications of being a carrier for the health of their children or grandchildren. This finding has particular importance for how policy and practice presents genetic testing. ? Professional perceptions of sickle cell and thalassaemia disorders being an attribute of minority ethnic groups/cultures/heritage (rather than a genetic condition per se) can reinforce stigma for carriers and undermine their confidence in biomedical explanations as well as the credibility of healthcare professionals. ? A policy focus on 'at risk communities' (rather than individuals) is similarly unhelpful in challenging stigma and promoting reproductive choice. It can inadvertently strengthen misperceptions and stereotypes, such as the association of 'full blown' sickle cell anaemia with AIDS in some people of African origin; or the attribution of thalassaemia to consanguinity in Muslims of South Asian origin. ? With around 1 in 10 couples in England living in mixed ethnic relationships- and likely to have children with multiple partners over their life-course -parents and (half) siblings within the same family can inherit different traits or complex haemoglobin variants. Identifying ethnicity/ family origin as a marker of 'at risk' individuals will increasingly become less reliable in clinical practice. |
| Exploitation Route | Our findings can potentially be used by academics, healthcare professionals, policy makers as well as carriers and others affected by these disorders within and outside the UK. Several Voluntary sector organisations, including SCS LONDON, UKTS have used our findings for capacity building and strengthening their recent funding applications to the NHS with our support. |
| Sectors | Communities and Social Services/Policy,Healthcare |
| Description | 1. INTRODUCTION The social and policy impact of our research has been maximised using our long standing partnerships with our national and local voluntary sector collaborators (Sickle Cell Society (SD is a scientific advisor), UK Thalassaemia Society, Oscar Sandwell, SSCAT Sheffield, Oscar Birmingham, Manchester) as well as links with the National Screening Programme (KA is an Advisory Board member; KA chaired Public Outreach and advises on national audit of new-born outcomes). We have used different pathways to engage with three main groups of stakeholders who have benefited from the research process as well as the findings: the NHS Screening Programme; health and social care professionals within the NHS and voluntary sector organisations; and carriers, patients, family and community members potentially affected by or caring for someone with sickle cell and thalassaemia disorders. The main focus of our impact plan has been to facilitate a dialogue across these three groups, without the naivety of assuming that power is shared equally among these three constituencies. 2. ENGAGING WITH STAKEHOLDERS I. We have engaged with the Outreach Office of the National (NHS) Screening Programme right from the inception of the project. We invited representatives to our Research Advisory Board meetings to ensure that they had a close engagement with the research process and the emerging findings. This link provided additional opportunities for: • Facilitating an input into the new suite of eight information leaflets for adult carriers published by the Screening Programme. (sct.screening.nhs.uk/publications). These leaflets were piloted (before publication) at the four regional professional workshops conducted by the research team. The research team also advised on the text to ensure it appropriately captured the experience of service users. • Providing advice to the Outreach Office on the format and social content of the proposed GCSE Science lessons, using sickle cell and thalassaemia as models to demonstrate inheritance. The lessons, developed in collaboration with the Sheffield Hallam University, used vignettes, aiming to widen the students' understanding of genetic disorders and carrier screening, highlighting probable ethical and cultural issues raised by screening. • Inviting the Director of the Programme, Dr Anne Mackie, to the London community dissemination event, at Friends House, in July 2014, to encourage wider public engagement with the salient issues related to information, screening and support raised by the research in addition to those highlighted by the participants on the day (including a thalassaemia patient, a sickle cell carrier and a mother who has cared for a son with thalassaemia who provided biographical accounts). • Following on from the London event and the written Summary of Findings (www.york.ac.uk/healthsciences/research/public-health/projects/beta-thalass/), the Outreach Office have confirmed that a review of the carrier leaflets will be a 2016-1017 objective; and that the NSC will also consider the value gained (or lost) from knowing carrier status of inherited autosomal recessive disorders (email communication: 08/06/15). II. Professionals within the NHS and voluntary sector organisations have used the findings from the research for educational/awareness purposes to: • gain a better understanding of the shared experiences of carriers in relation to genetic risk across ethnic groups; using this knowledge to challenge their own perceptions of ethnicity, minority ethnic groups and how individuals make reproductive choices; and • analyse why patients and carriers might behave in seemingly 'irrational' ways or engage in seemingly 'risky' behaviour; and think outside the box of the 'deficit model of science' focusing on the different meanings of and biographical contexts within which genetic risk is revealed as a process, rather than an one-off event. Our connections with professionals and voluntary sector organisations have been further facilitated by invited presentations at various events, organised by these key stakeholders. This was to ensure the widest possible dissemination of the study findings, facilitate community engagement and encourage informed discussion about the role of genetic screening and the use of reproductive technologies in our society. Audiences included carriers, patents, community members, local politicians, health and social care professionals, managers and policy makers. For example, we were invited to several educational/annual awareness meetings to discuss the findings: 9th Annual Health Conference, Sheffield Sickle Cell and Thalassaemia (SSCAT) (KA & SC): Research and Audit Seminar, Manchester NHS Trust (SC); UK Thalassemia Society, Bradford/Leeds area meeting (SC); North of England Bone Marrow and Thalassaemia Association (NEBATA) (SD); Annual Awareness Conference, Manchester (SC); Sickle Cell Society, AGM, London (SC and SD) who hosted a seminar 'on being a sickle cell carrier' for 75 participants (representing carriers, patients, family and community members as well as clinicians) in London (SC, SD). III. Connecting with carriers, patients with sickle cell and thalassaemia, family and community members by: • tapping into a shared pool of understanding and experience across ethnic groups and the two conditions and seeking appropriate information and support; • engaging with debates that address issues of disadvantage, disablism and discrimination within their own ethnic community as well as the wider society; and • challenging the wider racialised attitudes held by some professionals that treat sickle cell and thalassaemia as specific attributes of 'immigrant' ethnic groups and their 'cultures' In addition to research participants (professionals and carriers), patients, parents, carers and community members were also invited to both our community dissemination events, jointly hosted with our voluntary sector partners at the end of the project in July 2014 (London and West Bromwich, respectively). Both events were positively evaluated and by bringing voluntary, service and user stakeholders together, generated critical discussion on how best to develop service provision and community support in the current climate of austerity and severe reductions in funding, for voluntary sector organisations providing crucial support to the minority ethnic communities disproportionately affected by these disorders in the UK. Following on from our research aims and in response to the hostile environment in which our voluntary sector partners feel they have to operate, the team have supported the voluntary sector partners by sharing research expertise in building their research capacity. For example, KA and SD facilitated three national meetings involving eight NGOs (Sickle Cell Society, UK Thalassaemia Society, OSCAR Sandwell, OSCAR Birmingham, OSCAR Nottingham, OSCAR Leicester, Wolverhampton Sickle Cell and Thalassaemia Support Group, Sickle Cell Young Stroke Survivors) seeking: • to facilitate access to other larger/broader based NGOs (e.g. Age UK, MIND, Roald Dahl Charity) with whom they might collaborate and share research knowledge and resources; • to enable joint applications between the groups for funding, and • to enable collaborations around sharing research evidence in support of making the case for sickle cell/thalassaemia services to commissioners in a changing landscape for health, social and welfare services. As part of our wider commitment to supporting the voluntary sector organisations and the local communities they serve, KA and SC attended various meetings between SSCAT (Sheffield) and the NHS Local Commissioners to ensure proposed changes to the NHS funding do not have a detrimental impact on service users. Similar support has been provided to Leeds and Cardiff community organisations, along with concerned NHS providers, who feel their current provision is under threat. Finally, the team have looked to broaden the impact of the project by giving presentations in other community settings and supporting public engagement with genetics and ethical debates generated by the use of new reproductive technologies, such as, talks to North Yorkshire Humanists, participation in Pint of Science Event and a planned presentation to the University of the Third Age. 3. CHALLENGES One of the main challenges of achieving the impact plan has been to deal with certain politically and culturally sensitive issues emerging from and around our research. For example, the potentially conflicting response of local community members and healthcare professionals about the high incidence of consanguineous marriages amongst Muslims of South Asian origin was particularly salient at the Bradford UKTS regional awareness event. Following a standard presentation in English, SC was asked to discuss the findings in Urdu for a diverse multi-generational audience that was palpably uncomfortable at the mention of 'marrying within the biraderi' (endogamous kinship group/ consanguineous marriages). The other contentious issue was the potential policy response to the inadvertent diagnosis of sickle cell carriers through newborn screening and whether or not parents should be informed of such results (cf. the recent change in policy to non- disclosure of such results in Wales). As a research team, we had to respect the often conflicting perspectives of different stakeholders. We have, in fact, seen the negotiation of these as fundamental part of our community and policy engagement; and key to ensuring that informed debates about screening take place in an inclusive manner where the voices of people from minority ethnic and socio-economically marginalised backgrounds are heard as being equally valid. |
| First Year Of Impact | 2012 |
| Sector | Communities and Social Services/Policy,Education,Healthcare |
| Impact Types | Societal,Economic |
| Description | Advice on carrier leaflets for a range of haemoglobin disorders |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | Influence was brought about my National Screening Commmittee (NHS) for sickle cell and thalassaemia being aware of research. The broad area of influence was health. The initial literature review associated with the project helped inform the teams' response, when they were asked to comment on the leaflets. |
| Description | Advice on leaflets produced by NHS screening programme |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | Professor Atkin along with his colleague Dr Sangeeta Chattoo, was invited to comment on a leaflet, aimed at fathers, encouraging them to consider having a test for sickle cell or thalassaemia trait. They offered advice on the content and the presentation of the material. The leaflet, entitled 'Tests for Dads' is now widely used in policy and practice (see http://sct.screening.nhs.uk/leaflets#fileid11817). Initial insights from the project helped inform their response. |
| Description | Invitations/ suggestions from Public/on ways to improve health of Tribal populations in India |
| Geographic Reach | Asia |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Description | It takes two : genetics screening dilemmas to support GCSE science |
| Geographic Reach | Europe |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | Living with sickle cell or beta thalassaemia trait : preliminary findings and implications for policy and practice |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | We were invited to present the policy and practice implications of the preliminary findings from the project at the Steering Group Meeting of the NHS sickle cell and thalassaemia screening programme, held on 7th November, in London. We provided an overview of the preliminary findings from the project, focusing on issues of complexity and shifting nature of information sharing and communication over time (see power point presentation attached). Our presentation was followed by questions on the implications of the findings for the communications and outreach strategy within the programme. |
| Description | Review and redesign of 'Screening tests for you and your baby' booklet for the National Screening Committee |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| Description | Summary of research findings for health and social care professionals |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| URL | http://www.york.ac.uk/healthsciences/research/public-health/projects/beta-thalass/ |
| Description | Departmental workshop grant |
| Amount | £3,100 (GBP) |
| Organisation | University of York |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 11/2019 |
| End | 04/2020 |
| Title | This was mentioned as a possibility in the original grant application, but following discussion with the research funder, about the difficulties of anonymising the qualitative material, it was decided that it would be inappropriate. |
| Description | See above |
| Type Of Material | Database/Collection of data |
| Year Produced | 2012 |
| Provided To Others? | No |
| Impact | See above |
| Description | AGM 2012 Sickle Cell Society (Professor Simon Dyson) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Information and contacts were exchanged by Professor Dyson as well as presenting the project to Patrick Ojee the new CEO of Sickle Cell Society. Important for awareness amongst our stakeholders and for recruitment. |
| Year(s) Of Engagement Activity | 2012 |
| Description | AGM Sickle Cell Society 2013 and Patient Education Day 20th of July 2013 (Professor Simon Dyson) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | The event started off with the business of the Annual General Meeting, going through the accounts, work that has been carried out throughout the last financial year and looking ahead and after lunch went on to Patient Education section, where presentation were given by health professionals. Delegates came from all over the UK including London, Birmingham, Sandwell, Leicester and even as far as Ireland these were made up of people with sickle cell disorder, carers, family members, volunteers, workers and other professionals. Professor Simon Dyson represented our project. Information and contacts were exchanged by Professor Dyson as well as presenting the project to those interested such as the new CEO of Sickle Cell Society, John James. Awareness and outreach of the project. There were also patients and health care professionals that we recruited in this way. |
| Year(s) Of Engagement Activity | 2013 |
| Description | BSA Conference/ 2013/ YorkOn being a 'carrier' of a recessive gene disorder: the politics and power of the liminal |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Type Of Presentation | Paper Presentation |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | This paper looks at the social ramifications of the diagnostic category of a 'healthy carrier' through the theoretical lens of liminality, by analysing how men and women identified as carriers of sickle cell or thalassaemia (recessive gene disorders resulting in serious blood disorders) negotiate the notion of genetic risk within a particular biographical trajectory. In the UK, currently there are 240,000 sickle cell carriers (predominantly people of African and African-Caribbean origins origins) and 214,000 carriers of thalassaemia trait (largely people of Greek, Turkish, Cypriot, and South and Asian origins). Even though carriers do not develop the condition, we know little about how the diagnosis impacts on their ideas about health, illness and social identity on one hand and state governed technologies of 'reproductive choice' on the other. It will be argued that clinically a genetic trait exists 'betwixt and between' (Turner, 1967) the medical and the social; constituting a carrier of SCDs and thalassaemias as neither (not) healthy nor sick (Tapper, 1991, Fullwiley, 2010). Further, individual moral engagements with the notion of genetic risk reflect biographical locations and family history as well as wider political responses to these two conditions as minority health issues- both shaping and resisting state policies of governance aimed at prevention and control. This is the largest medical sociology conference that attracted over 500 delegates from different disciplines and provided a good opportunity to disseminate early findings from the research, network with international colleagues; and provide feedback to post graduate students involved in research. The conference was hosted by the university of York this year. This is the largest medical sociology conference that attracted over 500 delegates from different disciplines and provided a good opportunity to disseminate early findings from the research, network with international colleagues; and provide feedback to p |
| Year(s) Of Engagement Activity | 2013 |
| Description | Briefing for Journalist_Press Association_2015 |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | One of the project members Simon Dyson was asked to help the Sickle Cell Society with this social media campaign by writing the Briefing Note for this campaign. The campaign intended to draw attention to the inaccuracies in which sickle cell was portrayed by the TED2 film, produced by Universal Pictures. It is too early to say. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://sicklecellsociety.org/a-letter-to-universal-studios-regarding-ted-2/ |
| Description | Collaborating and engaging with research: what have we learnt from an ESRC project on the social implications of sickle cell and thalassaemia trait? |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | A conference presentation for the Dorothy Dixon-Barrow 9th Annual Health Conference, organised by one of our collaborating teams, Sheffield Sickle Cell and Thalassaemia (SSCAT) Foundation, at a local Community Centre. The delegates represented local haematology teams, voluntary sector organisations, the local blood donation and ambulance services, family members of children with sickle cell or thalassaemia, and the new Programme Manager for the NHS Sickle Cell and Thalassaemia Programme. The audience also included some of the families and professionals who had taken part in the research, allowing us to share some of the important emerging findings with them. Section not completed |
| Year(s) Of Engagement Activity | 2013 |
| Description | Commissioning third sector organisations to provide suport to those with sickle cell or thalassaemia |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Participants in your research and patient groups |
| Results and Impact | Karl Atkin facilitated a community workshop as part of the Dorothy Dixon-Barrow Annual Memorial Conference, organised by the Sheffield Sickle cell and Thalassaemia Foundation (SSSCAT Foundation). The workshop, made up of participants from the local multi-cultural communities, explored how voluntary sector provision currently helped people, by focusing on what people valued; what the relationship between statutory and third sector organisations should look like; and the potential impact of changes to commissioning arrangements on local communities. The outcome of the discussion informed SSCAT's response to local commissioners, as part of negotiations about the future shape of community services. We asked to provide further advice to third sector organisations. |
| Year(s) Of Engagement Activity | 2013 |
| Description | Community spirit in crisis |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | A fifteen minute radio inteview on Radio Cardiff to publicise conference and to talk more broadly about sickle cell and thalassaemia screening. The interview generated further requests for information form the local community. |
| Year(s) Of Engagement Activity | 2012 |
| Description | Diagnosing risk in pregnancy: to what extent do mothers exercise choice when making decisions about genetic screening for recessive disorders? |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | This is a workshop presentation given at the University of York, as part of the ESRC seminar series, 'The Role of Diagnosis in Health and Wellbeing' (http://www.esrc.ac.uk/news-and-events/events/28732/seminar-4-the-role-of-diagnosis-in-health-and-wellbeing.aspx) Establish national and international links as the basis for further collaboration. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.esrc.ac.uk/news-and-events/events/28732/seminar-4-the-role-of-diagnosis-in-health-and-wel... |
| Description | Do carriers have symptoms?: AGM, Sickle Cell Society, London |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Sc was part of the afternoon panel session dedicated to the experiences of sickle cell carriers and her presentation led to an animated discussion among the audience. T This event had an impact through a wider dissemination of the findings and the awareness that sickle cell is not a 'black disease' - a popular mis-perception shared by professionals and lay public alike. The questions (directed largely at a local clinician) reiterated the need for a wider recognition of the health implications of a carrier diagnosis and better information and support for carriers within policy and practice. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Ethnicity and haemoglobinopathies_Cyprus_2012 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Type Of Presentation | keynote/invited speaker |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | An invited talk by one of the team (Simon Dyson) on the limits of ethnicity as a conceptual framework for sickle cell and thalassaemia, given to the 3rd Pan-European Conference on Haemoglobinopathies & Rare Anaemias Limassol, Cyprus, 24 - 26 October 2012 Audience reported that they had not previously understood the depth of sociological work on conceptual links between ethnicity and sickle cell and thalassaemia |
| Year(s) Of Engagement Activity | 2012 |
| Description | Ethnicity and sickle cell_Cardiff_2013 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | An invited lecture by one of the team (Simon Dyson) to mark 25 years of haemoglobinopathy screening in Wales. Requests for further information |
| Year(s) Of Engagement Activity | 2013 |
| Description | Ethnicity and sickle cell_Rome_2013 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Undergraduate students |
| Results and Impact | An invited lecture by one of the team (Simon Dyson) to Mediterranean Haematology meeting in Rome, to a mixed audience of medical students and health professionals on the limits of the relationship between ethnicity and sickle cell Increase in requests for information |
| Year(s) Of Engagement Activity | 2013 |
| Description | Framing Sickle Cell Disease: genetics, contagion and global public health |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | The paper stimulated a heated discussion among the audience about the nature of sickle cell as a racialised disorder, and about the similarities of the politics of racialised care across Brazil, the USA and other healthcare settings. We are developing a programme of work related to SCD with colleagues in Brazil; and one of them has secured a Science Beyond Borders Fellowship to spend a year in our Department (Health Sciences) at York; another PhD candidate is expected to register with us |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.globalsicklecelldisease.org/ourResources/upcomingevents |
| Description | Genetic screening among ethnically diverse populations: to what extent can informed choice be realised? |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Presentation as part of the Social Policy Research Unit (University of York) semiar series on Equality and Diversity. Further collaborative links were made. |
| Year(s) Of Engagement Activity | 2013 |
| Description | Invited speaker at a national seminar organized by the UK Thalassaemia Society |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Smon Dyson (Unit for the Social Study of Thalassaemia and Sickle Cell, School of Allied Health Sciences) was the invited speaker at a national seminar organized by the UK Thalassaemia Society at the King Power Stadium, Leicester on Saturday 29th November 2014. The title of the presentation was "Making Sense of Thalassaemia Trait", and presented findings, which were discussed by the audience afterwards Audience reported been more aware of the complexities involved in identifying trait carriers. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Living with sickle cell or beta-thalassaemia trait : research workshop with healthcare professionals (session 1) - Sandwell |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Given our links with the National Screening Committee, the Outreach Office requested the team to seek feedback from health and social care professionals taking part in our research workshops on the content and layout of proposed (new) leaflets for adult carriers of sickle cell and thallasaemia. Sangeeta Chattoo introduced a copy of two leaflets (Hb AS and B thalassaemia) to a group of health professionals and voluntary sector workers (Group 1), during discussions about providing appropriate information and support to people identified as carriers from different ethnic backgrounds. 5 participants took part in this workshop, representing 2 specialist nurses and 3 volunteers working for relevant charities. Impact was created by feeding back the responses of the participants to the Outreach Office of the (NHS) National Screening Committee. This feedback (collated with responses from the other three workshop sessions) has informed the final publication of the suite of leaflets now available online at the NHS Screening Programme website. In addition, Sangeeta also provided advice to the Outreach Office on the appropriate South Asian languages in to which the leaflets might be translated for wider access. Impact was created by feeding back the responses of the participants to the Outreach Office of the (NHS) National Screening Committee. This feedback (collated with responses from the other three workshop sessions) has informed the final publication of the suite of leaflets now available online at the NHS Screening Programme website. In addition, Sangeeta also provided advice to the Outreach Office on the appropriate South Asian languages in to which the leaflets might be translated for wider access. |
| Year(s) Of Engagement Activity | 2012,2013 |
| Description | Living with sickle cell or beta-thalassaemia trait : research workshop with healthcare professionals (session 2)- Leeds |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | This was the 2nd in the series of 4 workshop sessions where, in response to the request of the Outreach Office of The National Screening Programme for Haemoglobinopathies, I sought feedback from health and social care professionals on the content and layout of proposed (new) leaflets for adult carriers of sickle cell and thallasaemia. I introduced a copy of two leaflets (Hb AS and B thalassaemia) to a group of health professionals and voluntary sector workers (Group 2), during discussions about providing appropriate information and support to people identified as carriers from different ethnic backgrounds. The session was attended by 9 professionals from different areas and services. The session was attended by 9 professionals representing haematology nurses, specialist haemoglobinopathy counsellors and voluntary sector workers from Midlands, Yorkshire and New Castle, and 2 voluntary sector workers. The participants brought their varied experiences of dealing with people from minority ethnic backgrounds to the discussion on the use and interpretation of the proposed new leaflets. The Wokshop had a significant Impact in allowing us to feed back the responses of the participants to the Outreach Office of the (NHS) National Screening Committee. This feedback (collated with responses from the other three workshop sessions) has informed the final publication of the suite of leaflets now available online at the NHS Screening Programme website. In addition, Sangeeta also provided advice to the Outreach Office on the appropriate South Asian languages in to which the leaflets might be translated for wider access. |
| Year(s) Of Engagement Activity | 2012 |
| Description | Living with sickle cell or beta-thalassaemia trait : research workshop with healthcare professionals (session 3) - Sandwell |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | In response to the request of the Outreach Office of the the National Screening Programme, this was the 3rd in a series of 4 workshops where I sought feedback from health and social care professionals on the content and layout of proposed (new) leaflets for adult carriers of sickle cell and thallasaemia. I introduced a copy of two leaflets (Hb AS and B thalassaemia) to a group of health professionals and voluntary sector workers (Group 1), during discussions about providing appropriate information and support to people identified as carriers from different ethnic backgrounds. Three participants took part in this workshop, organised to include those who were keen to take part but were not able to attend Session 1 (Sandwell) held at the same venue on 29/05/12. The group included a paediatrician and two voluntary sector workers. Holding an extra session allowed the team to add to the range of disciplines and local responses in our discussion on the use and content of the proposed new leaflets. The responses from this workshop were included in our feedback from the other three workshops to the Outreach Office of the (NHS) National Screening Committee. |
| Year(s) Of Engagement Activity | 2012,2013 |
| Description | Living with sickle cell or beta-thalassaemia trait : research workshop with healthcare professionals (session 4) - London |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Given our links with the National Screening Committee, the Outreach Office requested the team to seek feedback from health and social care professionals taking apart in our research workshops on the content and layout of proposed (new) leaflets for adult carriers of sickle cell and thallasaemia. Sangeeta Chattoo introduced a copy of two leaflets (Hb AS and B thalassaemia) to a group of health professionals and voluntary sector workers (Group 1), during discussions about providing appropriate information and support to people identified as carriers from different ethnic backgrounds. 9 participants took part in this workshop held over two hours in London, representing a range of services from antenatal care, haemoglobinopathy counselling and adult serivces as well as community workers (voluntary sector organisations). Impact was created by inviting a senior member of the Outreach Office of the National Screening Programme to the workshop, to facilitate communication and discussion of issues surrounding outreach and dissemination - of which the suite of Leaflets is a part. The responses of the participants were fed back to the Outreach Office of the (NHS) National Screening Committee. This feedback (collated with responses from the other three workshop sessions) has informed the final publication of the suite of leaflets now available online at the NHS Screening Programme website. In addition, Sangeeta also provided advice to the Outreach Office on the appropriate South Asian languages in to which the leaflets might be translated for wider access. Impact was created by inviting a senior member of the Outreach Office of the National Screening Programme to the workshop, to facilitate communication and discussion of issues surrounding outreach and dissemination - of which the suite of Leaflets published last year by the NHS is a part. The responses of the participants were fed back to the Outreach Office of the (NHS) National Screening Committee. This feedback (collated with responses from the other three workshop sessions) has informed the final publication of the suite of leaflets now available online at the NHS Screening Programme website. In addition, SC, KA and SD acted as External Advisors for reviewing a school lesson plan informing students about sickle cell and thalasaemia, providing feedback |
| Year(s) Of Engagement Activity | 2012 |
| Description | London Community Dissemination event:Living with sickle cell or thalassaemia trait |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Participants in your research and patient groups |
| Results and Impact | An invited audience of 30 research participants, community members, patient representatives, voluntary sector workers, clinicians, academics as well as two senior representatives of the National Screening Programme attended the meeting held in London. The first session included a detailed summary of the findings, followed by individual presentations by a thalassaemia patient, a sickle cell carrier and a mother of a young person with thalassaemia (covering a time span of policy initiatives). Participants had plenty of time for asking questions, sharing local experiences. Director of the Screening Programme, Anne Mackie, responded to questions. The second session included three workshops, each facilitated by a member of the research team, followed by a summary of the day's events. The major impact of the event was to facilitate a dialogue, with the help of the research findings and the three community speakers, between key policymakers and the community members. The Director of the Screening Programme was obviously committed and willing to engage with the debate on policy, practice and ethical issues. Some of the suggested recommendations, especially regarding the quality of information provided in the leaflet 'You and your baby', have been taken on board and likely to result in a revision. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Making Sense of Thalassaemia Trait_Manchester_2014 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | An invited talk by one of the team (Simon Dyson) on Making Sense of Thalassaemia Trait, given to the North of England Bone Marrow and Thalassaemia Association (NEBMTA) 16th Annual Conference Nawaab Restaurant, Stockport Road, Manchester, 21st June 2014. Head of NEBMTA requested further information |
| Year(s) Of Engagement Activity | 2014 |
| Description | Manchester NHS Research and Audit Seminar |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | Yes |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | 25 professionals, largely nurses and midwives, and a representative from the Screening Programme, participated in the research and audit seminar; SC's presentation focused on the experiences of carriers identified through the antenatal care pathway and the pragmatic and ethical issues raised by identifying babies as carriers through the newborn screening; and the implications for policy and practice. SC's presentation was followed by questions and a discussion. Given the direct relevance of the presentation to professional attitudes and practices related to carriers from minority ethnic groups, SC has been invited to speak at the UK Forum on haemoglobinopathies in November 2014. |
| Year(s) Of Engagement Activity | 2014 |
| Description | NHS Sickle Cell and Thalassaemia Annual Review Day (22 March 2013) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | With Dr. Chattoo, I participate in the NHS Sickle Cell and Thalassaemia Annual Review Day. This was a national meeting with health care professionals and academics from across the UK. The audience was in the hundreds. We thus met with many health care professionals, learned about history and future of the programme, the structure of Public Health England, the Clinical Commissioning Groups, and attended special seminars linked to our projects, for example, on improving engagement with men. Dr. Berghs introduced the project to health care professionals and did some outreach. This meant that an awareness was gained in terms of which health care professionals, such as specialist nurses, would be interesting to interview and where in England we should be focusing our recruitment. We learned about the NHS Sickle Cell and Thalassaemia programme, found out about how data is gathered about patients linked to screening services, issues linked to engagement with men and how the latest infor |
| Year(s) Of Engagement Activity | 2013 |
| Description | Radio Interview_RadioIIFunky_Leicester_2015 |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | A member of the team, Simon Dyson, gave a radio interview upon request as part of Leicester Black History Month activities. Requests for further information about community seminar on sickle cell |
| Year(s) Of Engagement Activity | 2015 |
| Description | Refining Health Curricula_Toronto_2013 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Undergraduate students |
| Results and Impact | A presentation by one of the team (Simon Dyson) given to the conference Sickle Cell: A Family Affair; organized jointly by the Sickle Cell Association of Ontario and Humber College, Toronto to mark June 19th (International Sickle Cell Day) Mixed audience of undergraduate health professionals, qualified health professionals, health lecturers and community acitvists reported a committment to address sickle cell in the curriculum |
| Year(s) Of Engagement Activity | 2013 |
| URL | http://healthsciences.humber.ca/assets/files/pdfs/SickleCell-AFamilyAffairBrochure20130517.pdf |
| Description | Roundtable discussion on how key players in the sickle cell community can work together |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Type Of Presentation | Workshop Facilitator |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | There are over 20 community organisations providing support for those affected by sickle cell and thalassaemia. Despite strong connections to local communities, these organisations' efforts can often appear fragmented. They also face an increasing hostile funding environment, while changes in the NHS often mean sickle cell and thalassemia face further neglect. Karl Atkin and Simon Dyson, using contacts emerging from their current research project, facilitated a day-long meeting in Leicester, to establish whether closer joint working would be welcome by community organisations. To help focus the discussion, three speakers were invited (representing Roald Dahl Marvellous Children's Charity. Age UK and MIND) to share their experience of working in the third sector. These presentations informed the basis of wider discussion among the participants. The day, although challenging, was a success and various action points were agreed, including a further meeting in March 2014, to discuss joint vision and strategy, along with identifying possible joint projects, on which the various organisations can work together. Various third sector organisations associated with sickle cell and thalassaemia agreed to closer join-working and collaboration |
| Year(s) Of Engagement Activity | 2013 |
| Description | Roundtable discussion on how key players in the sickle cell community can work together |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Type Of Presentation | Workshop Facilitator |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | There are over 20 community organisations providing support for those affected by sickle cell and thalassaemia. Despite strong connections to local communities, these organisations' efforts can often appear fragmented. They also face an increasing hostile funding environment, while changes in the NHS often mean sickle cell and thalassemia face further neglect. Karl Atkin and Simon Dyson, using contacts emerging from their current research project, facilitated a day-long meeting in Leicester, to establish whether closer joint working would be welcome by community organisations. To help focus the discussion, three speakers were invited (representing Roald Dahl Marvellous Children's Charity. Age UK and MIND) to share their experience of working in the third sector. These presentations informed the basis of wider discussion among the participants. The day, although challenging, was a success and various action points were agreed, including a further meeting in March 2014, to discuss joint vision and strategy, along with identifying possible joint projects, on which the various organisations can work together. The activity facilitated greater join working about sickle cell and thalassaemia third sector organisations. |
| Year(s) Of Engagement Activity | 2013 |
| Description | Sandwell Community dissemination event: Living with sickle cell or beta thalssaemia trait |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | An invited audience of 26 participants representing research participants, community members, patient representatives, voluntary sector workers, clinicians and academics attended the half day session where the team presented the research findings followed by questions and a discussion. Two workshops were facilitated providing the members an opportunity to discuss and debate some of the issues relevant to their own practice. The networking and sharing of information has been an important aspect of the team's commitment to help the voluntary sector organisations engage with and benefit from wider research. Equally, sharing the findings with our research participants has an impact of increasing the visibility and credibility of research among lay community members who, often, are left out of the loop once a piece of research has been completed. |
| Year(s) Of Engagement Activity | 2014 |
| Description | Screening for sickle cell and thalassaemia in multi-cultural societies |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | A member of the team was invited to give a talk at Radbound University, Nijmegen, Netherlands, exploring the value of using ethnic origin as a tool for identifying populations at risk of sickle cell or thalassaemia disorders. The Dutch Government is looking at ways of developing its genetic screening programme and the paper I presented reflected on some of the issues raised by offering screening in the UK. Further collaborative links with colleagues in the Netherlands were generated. |
| Year(s) Of Engagement Activity | 2011 |
| Description | Sickle Cell & Thalassaemia Screening Community Outreach Project Advisory Group_2016 |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Karl Atkin and Simon Dyson were invited advisors to NHS Sickle Cell & Thalassaemia Screening Community Outreach Advisory Group, aiming to increase access to informed decision-making during pregnancy for those living with sickle cell or thalassaemia trait |
| Year(s) Of Engagement Activity | 2016 |
| Description | Sickle Cell: Challenges for the Future_OSCAR Nottingham_2015 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Talk by one of the ESRC team members, Simon Dyson, led to discussions among the many stall holders at the community Health and Well-being Day Request for further information from local Nottingham MP Chris Leslie who attended the event, and who after discussions agreed to a further meeting with the self-help group Nottingham OSCAR to discuss funding and sickle cell. |
| Year(s) Of Engagement Activity | 2015 |
| Description | The illusion of choice: the ethics of genetic screening during pregnancy |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | The talk sparked a hour long discussion on the moral dilemmas of accepting antenatal genetic screening for both the individual and broader society. The audience were especially interested in talking about faith based responses. None |
| Year(s) Of Engagement Activity | 2015 |
| Description | The illusion of choice: the ethics of identifying genetic carriers |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | Provided a talk as part of the Pint of Science Festival York, which stimulated broader discussion about the ethics of genetic screening. Participants engaged in a lively debate about the future of genetic testing. A diverse range of views were expressed. |
| Year(s) Of Engagement Activity | 2015 |
| URL | https://pintofscience.co.uk/events/york/ |
| Description | The politics of choice: genetic screening in pregnancy |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | The talk generated a discussion about the role of genetic screening in modern society. Further invitations to talk at community events were received. |
| Year(s) Of Engagement Activity | 2015 |
| URL | http://www.york.ac.uk/news-and-events/events/public-lectures/spring-2015/york-talks-2015/ |
| Description | The politics of sickle cell and Thalassaemia |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | This was a two hour workshop presentation (with discussion) as part of a seminar series, organised by the Centre for Inclusion and Diversity, University of Bradford. Twenty-five people attended from a range of different backgrounds, including academic members of staff, post-graduate students, NHS practitioners, health care managers and service users. The presentation was broad in scope and using research evidence, identified some of the political, social and ethical tensions informing the historical and current provision of screening and care services for sickle cell and thalassaemia disorders. Part of the presentation reflected on some of the issues informing our current ESRC funded project, Living With Sickle Cell Or Beta Thalassaemia Trait: Implications For Identity And Social Life. These included how people make sense of being a carrier of sickle cell or thalassaemia trait and the specific implications of this for how they perceive its impact on their ideas of health. The workshop also presented an ideal opportunity to publicise the project; identify potential statutory and community partners; and generate our sample. Further requests for information and invited talks were generated from this activity. |
| Year(s) Of Engagement Activity | 2012 |
| Description | The politics of sickle cell and thalassaemia: the continuing importance of tackling inequalities in care |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | This is a key note address as part of an annual international conference held at the University of Bradford (Making Diversity Interventions Count). The key note was the third Barbara Burford Memorial Lecture (http://www.guardian.co.uk/society/2010/may/26/barbara-burford-obituary). The abstract of the paper is below: Long standing political struggles mean it is no longer possible to dismiss sickle cell and thalassemia as marginal health concerns that only affect ethnic minority populations. Nonetheless, inequalities remain. Coordinated ante-natal and neo-natal screening is raising important questions about what is meant by informed choice, while essenitalised ideas of ethnic and cultural differences continue to generate barriers to care. In addition, service provision for those with the condition, despite examples of excellent practice, remains under-resourced and poorly coordinated. This presentation will assess the current evidence, by outlining the potential for inequality in current policy and practice, before offering a foundation on which to base future strategies for facilitating equality. In doing so, the presentation will provide an overview of current screening policy for so called 'at-risk' communities and connect these to current assumptions informing health and social care for those with the condition. It will conclude by outlining an agenda for change. Collaborative links were made with colleagues working in ethnicity and inequalities |
| Year(s) Of Engagement Activity | 2013 |
| Description | Why sickle cell and thalassaemia are really health and not ethnic issues |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Participants in your research and patient groups |
| Results and Impact | The presentation was given as part of community led, conference - Community Spirit in Crisis? Creating the potential for positive change - held in Cardiff and organised by Friends of Cardiff Sickle Cell and Thalassaemia. The research team have been given advice to the local community for several years, as a consequence of the local Trust's decision to re-organise service delivery. The conference was part of a broader strategy to engage communities in the decision making process. About sixty people attended the day and the audience included members of the local community, including those directly affected by the two conditions; health care professionals and commissioners; and representatives from local voluntary and community organisations. The research team were asked by NHS colleagues to help advice on sickle cell and thalassaemia services in Cardiff. |
| Year(s) Of Engagement Activity | 2012 |