Enhancing community genetic literacy

Funded by Genetic Disorders UK and CLAHRC Yorkshire & Humber

 What are the aims of this project?

This project aims to develop materials and approaches for enhancing genetic literacy at community level with a focus on the genetic risk associated with customary consanguineous marriage.

 Why is this important?

Populations that practice customary consanguineous marriage have higher rates of infant mortality and lifelong disability due to a heightened risk of autosomal recessive genetic conditions. WHO recommends: training health professionals, raising genetic literacy at population level, and focused services for families at risk. However, UK service responses are in their infancy and most people at risk have little or no understanding on which to make informed decisions. The need to increase understanding and develop appropriate services has been identified in Sheffield at both community and professional levels.

This project links to our wider programme of work on developing an appropriate service response to genetic risk associated with customary consanguineous marriage.

 How will the research be carried out?

A participatory, action research project has been adopted with the goal of developing, delivering and evaluating a community-based genetic literacy and support model. Working closely with community researchers, we undertook an iterative process of generating insight, developing materials and testing our approach.  Follow on work is now underway to evaluate more rigorously an informational video that has been developed.

Timeframe:

March 2013 – March 2016

Who is undertaking the research?

Professor Sarah Salway, Dr Parveen Ali, Saima Ahmed (Pakistan Advice & Community Association), Dr Liz Such

 How are stakeholders being engaged?

The project involves close collaboration between university researchers, public health practitioners and community based organisations. The participatory approach involved community researchers who were trained and supported to gather and analyse data in their communities. An advisory group was convened to provide critical commentary on the initial research, involving lay and professional members. The project now reports regularly to the Sheffield Community Genetics Working Group. Findings and progress are shared regularly across the region with stakeholders.

What will be the outputs from the study?

A video has been developed and is available on request s.salway@sheffield.ac.uk

A presentation on the project was delivered by Sarah Salway at the Lancet/UCL Public Health Science conference in Glasgow in November, 2014.Towards enhanced community genetic literacy among a minority ethnic community: a participatory action research project


Young mothers’ negotiations of infant feeding. A qualitative study with ethnographic methods.

Funded by NIHR CLAHRC for South Yorkshire (Inequalities Theme)

What are the aims of this project?

This small study aims to enhance understanding of young mothers’ experiences of infant feeding. The objective is to examine why mothers under 20 have the lowest rate of breastfeeding in the UK. The study also aims to suggest changes to practice that may help support young mothers to breastfeed.

Why is this important?

Breastfeeding is known to have significant health benefits for mothers and babies and may help to ameliorate some health inequalities in deprived or marginalised groups such as young mothers.

How will the research be carried out?

Ten young mothers were followed on their journeys from pregnancy to weaning, by interviewing and observing them.

Timeframe:

The data collection took place from January 2013 to November 2013. Analysis and write up will be completed by January 2016.

Who is undertaking the research?

Phoebe Pallotti for her doctoral research. Supervisors: Sarah Salway, Liddy Goyder.

How are stakeholders being engaged?

Young mothers and Teen Link midwives were consulted at each stage of the research.

What will be the outputs from the study?

A PhD Thesis.

A presentation was given at the UCLAN Maternal and Infant Nutrition and Nurture Unit (MAINN) 2015 conference.


Welfare and wellbeing at older age

ageing well

Funded by the NIHR School for Public Health Research as part of the Ageing Well Programme of research.

What were the aims of this project?

This project aimed to:

  • Look at the ways in which welfare benefits shape wellbeing at older age.
  • Assess the health impact of any potential changes to benefits for this age group.

How was the research carried out?

Interviews were conducted with 30 older people from three different areas of the UK, including people from a range of ethnic, socio-economic and older age groups. We asked people about their work and social histories, their current day-to-day activities and financial and social priorities as well as their views and experiences of welfare provision for older people.

Why is this important?

The continuation of universal welfare benefits for older people has been challenged at a national policy level. Calls for introducing further conditionality to benefits for older adults are often based on claims that this will increase fairness and equality but our findings indicate that introducing conditionality has the potential to promote inequality and foster differentiation and division among older people. Our findings drew attention to the material and psychosocial impact of welfare benefits, showing that universal benefits fostered self-worth and were seen as a reward for a lifetime of hard work and financial responsibility.  When talking about needs-tested benefits older people questioned the moral deservingness of recipients. People assessed deservingness according to class, age, ethnicity and nationality. Applying for conditional benefits meant dealing with the stigma that older people felt were attached to these benefits; some people described feeling shame and a sense that they were applying for something that was not theirs. These feelings caused anxiety and deterred some people from applying.

Timeframe:

The fieldwork was carried out between December 2013 and July 2014. The findings were published at the start of 2015.

Who undertook the research?

This was carried out by the following researchers at the national School for Public Health Research:  Judith Green (Project Lead),  London School of Hygiene and Tropical Medicine; Stefanie Buckner,  Cambridge Institute of Public Health; Sarah Milton, London School of Hygiene and Tropical Medicine; Suzanne Moffatt,  Fuse The Centre for Translational Research in Public Health, Newcastle University; Sarah Salway, School of Health and Related Research (ScHARR), University of Sheffield; Katie Powell, School of Health and Related Research (ScHARR), University of Sheffield. Thanks are due to Roy Darlison, Sheffield 50+ and the Sheffield Palliative Care Studies Advisory Group for their advice and to Mubarak Ismail, Sadique Bhanbro, Lerleen Willis for their contribution to data generation.

How were stakeholders engaged?

  • We sought feedback on project aims and design through informal conversations with practitioners working to support older people in the field of welfare
  • We sought feedback on project aims, design and recruitment methods and emerging findings through more formal and structured face-to-face focus groups with older people: an engagement event was organised in Sheffield with lay people, commissioners, voluntary sector organisations and public health officers working with older people to discuss ways in which the findings might be used to inform practice.

What are the outputs from the study?

A lay summary was prepared and shared with stakeholders locally and nationally.

A paper has been published:

Milton A, Buckner S, Salway S, Powell K, Moffatt S, Green J. Understanding welfare conditionality in the context of a generational habitus: A qualitative study of older citizens in England. (2015) Journal of Ageing Studies, 34, 113-122

Presentations have been given at a number of regional and national conferences.


Inequitable access to services for older people

Funded by the NIHR School for Public Health Research as part of the Ageing Well Programme of research.

What are the aims of this project?

The project investigates the extent to which older people receive inequitable access to effective and cost-effective health interventions, both clinical and public health. A range of conditions and health interventions which are effective in both younger and older people will be examined.

We will focus on the potential impact of interventions in older populations on inequalities in health outcomes. We will explore how such inequalities arise and seek to identify ways to intervene to prevent them.

Social inequalities in health among older populations seem to be widening and this work package will explore one potentially important cause with a view to identifying ways to reduce such inequalities.

Why is this important?

It is important because the health of older people will be adversely affected if they fail to receive health interventions which improve the quality and quantity of life. Moreover, age-discrimination is something which has been found fairly extensively in the past, but should not be occurring now, not least because recent age-equality legislation has been introduced.

How will the research be carried out?

A number of sub-studies are being undertaken. Currently, the research carried out in ScHARR includes two sub-studies:

  • A literature review of existing published evidence about inequality in access to health interventions in older people:
  • A study using existing data on utilisation of smoking cessation services in older people.

Timeframe:

From November 2013 until March 2017

Who is undertaking the research?

In Sheffield

Sarah Salway, Nick Payne, Melanie Rimmer, Hannah Jordan

How are stakeholders being engaged?

  1. Stakeholder consultation events; and
  2. Engagement with PPI representatives on the ScHARR SPHR Advisory Group.

What will be the outputs from the study?

  • Presentations at scientific conferences:
    Early findings were presented at the British Society for Gerontology Annual Conference in Newcastle, UK in July 2015.
  • Publications in Journals

Reports and presentations to lay audiences including stakeholders


Cascading genetic information within families

Funded by Sheffield Children’s Hospital Charity 

 What are the aims of this project?

This research aims to understand in detail patients’ and providers’ perspectives on the issue of cascading genetic information and services within families.

 Why is this important?

The inherited nature of genetic health conditions makes them a family concern. When one person is diagnosed with a genetic condition, this raises questions about the risk of illness for related individuals, including children yet to be born. However, sharing information among family members may not be straightforward, raising a host of personal, ethical and practical issues. This is particularly so for conditions where individuals can be healthy carriers, living life unaware of the genetic risk that they carry. As genetic technologies develop and testing for even very rare conditions expands, there is a growing need to develop effective and appropriate approaches to offering genetic services to wider family members. Furthermore, increasing ethnic and religious diversity of the population makes it important that such approaches are adequately responsive to diverse patient needs. Indeed, advances in genetic services must be made as accessible to all groups of people as possible. Currently we know little about the factors that encourage or discourage genetics service users – particularly those from minority ethnic groups – from sharing information with other family members (we call this ‘cascading’). This gap in understanding makes it difficult for service providers to know how to approach this issue effectively.

This project links to our wider programme of work on developing an appropriate service response to genetic risk associated with customary consanguineous marriage.

 How will the research be carried out?

We will carry out detailed interviews with service users from a range of ethnic and religious backgrounds, and also with genetic counsellors working within the Regional Genetics Service at Sheffield Children’s Hospital. Initial findings will be shared in a participatory workshop with stakeholders to explore possible modifications to current practice.

Timeframe:

March 2014 – December 2016

Who is undertaking the research?

Professor Sarah Salway, Dr Oliver Quarrell (Sheffield Children’s Hospital), Dr Parveen Ali.

 How are stakeholders being engaged?

The project involves close collaboration between university researchers, clinicians and healthcare professionals and Sheffield Children’s Hospital. An advisory group has been convened to provide critical commentary on the research, involving lay and professional members.

What will be the outputs from the study?

Findings will be used to inform the development of improved approaches to cascading with the aim of testing in a follow on study.

Presentations and papers will be prepared for both professional and lay audiences.


WiLD: Weight Loss for people with Learning Disabilities

What are the aims of this project?

The aims were to identify where modifications can be made to Slimming World, a private, UK wide, weight management intervention, to make changes to the intervention and to evaluate and further refine the modified intervention in a small feasibility study in order to provide a more equitable service for overweight and obese people with learning disabilities.

 

Why is this important?

Adults with learning disabilities have a higher prevalence of overweight and obesity than people in the general population. Obesity is known to reduce life expectancy and increase morbidity. Commercial weight management organisations have been shown to be clinically and cost effective for weight management in the general population. However a small body of evidence suggests they are not accessible or acceptable to everyone and it is not known to what extent they are accessible and relevant to people with learning disabilities.

 

How will the research be carried out?

This qualitative study had two stages: An initial stage used interviews and focus groups to identify where potential modifications could improve acceptability and accessibility of the intervention. The second stage evaluated the modified intervention in a small feasibility study.

 

Timeframe:

March 2014 – February 2016

 

Who is undertaking the research?

Liz Croot, Melanie Rimmer, Alicia O’ Cathain, Sarah Salway, Janet Harris. Chris Hatton (University of Lancaster), Emma Dowse (Slimming World), Jacquie Lavin (Slimming World)

 

How are stakeholders being engaged?

A steering group of people with LD contributed to the design and conduct of the study. We worked with people with LD and Slimming World group leaders to identify where modifications were needed and to evaluate the modifications that we made.

 

What will be the outputs from the study?

We hope that Slimming world will be able to use our recommendations to develop their services for people with learning disabilities.


Criticality and the welfare commons for health equity

Change

 

 

 

 

 

 

 

 

 

 

 

By Liz Such, Katie Powell and Julie Balen

Those looking for new ways to address contemporary social injustices might be heartened to read Fiona Williams’ recent think-piece in the Social Policy Association’s Social Policy Review (27). Her brief history lesson, on the origins of critique in social policy, reminds us how research can form an act of resistance to social injustices, of which health inequity is a part. Using inspiration from the feminist, disability and gay rights movements among others, Williams proposes a framework for critical social policy that might underpin wider contemporary resistance to injustices. The piece wasn’t an easy-read and it felt sometimes that the ideas were bouncing around but it certainly inspired deeper thinking about how health inequity can be challenged through research that harnesses contemporary forms of resistance. The piece raises some important questions about the sort of claims that can be made to support action to reduce health inequity

At the core of Williams’s framework are two concepts: ‘criticality’ and the ‘welfare commons’. Criticality refers to a view to the future that goes beyond criticism and critique: “While criticism is a mere descriptive identification of what an author disagrees with, critique attempts to deconstruct the underlying beliefs, claims and unexamined partiality in any given phenomenon, to point out omissions and injustices. Criticality, however, goes beyond this; it is forward-looking, it looks to political spaces for intimations of transformations” (p106). As such, criticality involves the creation of an imaginative space that enables practices of resistance through the articulation (rather than prescription) of alternatives to current practices and power configurations. For researchers and practitioners working in the field of health equity, this approach has the potential to shift the focus of action beyond mere description of established patterns of inequity towards a reimagined future. As Burowoy warns, academics need to be wary of the ways in which such practices can perpetuate their own privileges (Buroway 2005).

Williams’ call for criticality echoes Graham Scambler’s (2015) rallying cry to sociologists urging a search for alternatives to the current pattern of relations underpinning financial capitalism and growing social inequality in the UK. Criticality in social policy, Williams argues, has already contributed to a better understanding of the “multivalent forms of resistance” – recognising for example that resistance might involve redistribution of resources and recognition of the experiences of particular groups (which might be conceived as finding a ‘voice’ for marginalised groups). It has also, she argues, identified the “multi-layered nature of welfare settlements” (the different modes, practices and discourses for example that might be associated with welfare). Finally Williams draws attention to the work of criticality in social policy in uncovering the “multi-level nature of welfare” – recognising the interdependency between micro, meso and macro processes shaping injustices.

Welfare Commons refers to the reclaiming of public resources that have been subject to commodification over the last century: “land, water, space, time, creativity, public services, care” (p.95). The concept refers to a renewed democratic purpose that promotes communal and shared ownership of these resources. Recent examples of this in relation to health equity can be seen in organised campaigns that seek to resist neo-liberal pressures to shrink the welfare state, such as the “Save Our NHS” and anti-austerity campaigns.

The mobilisation of resistance however according to Williams, “stands on a knife edge” (p.95). The global expansion of neo-liberalism, disaffection with mainstream politics and the commodification of core resources such as care, education and health are superpowers in the struggle to claim resources for the common good. Williams draws on examples from her research into the organisation and implementation of care work to show how criticality and the welfare commons might be used to identify common issue areas – and sites for resistance – within a range of social justice areas. Investigating the ecological, financial and social reproductive systems affected by the issue of care among ageing populations, Williams identified three common themes: recognition, rights and redistribution.  Recognition of care as work, supports for the rights of carers as workers and redistribution of the resources needed for caring provide a framework for action that cuts across movements mobilised around the needs of workers, disabled people and migrants.  These concepts, she argues, help to unify the resistance across a range of causes – finding common ground and connections in the fight against injustice.

Health equity work and research with health equity at its core can be seen as allied with both criticality and the welfare commons. Equity is a future imagining of health locally, regionally, nationally and globally and resistance to inequity is evident in research and practice. Equitable health is a question of recognition, rights and redistribution that is articulated as an aspiration in local, national, regional (e.g. EU) and global (e.g. WHO) strategies. Knowing how to do it – to operationalise resistance –  is a more pressing challenge. While ‘everyday inhabitants’ and national and global pressure groups are voicing a challenge to the commodification of resources, it is beyond their gift to mobilise their mass reclamation. Researchers working in the field of the social determinants of health frequently scratch their heads as to how to effect change in the context of existing structural constraints. Williams framework would suggest that what is needed is to create conceptual coalitions “across progressive groups” (p.103) active in civil society to identify interdependencies between areas of resistance. This could include organisations that contest welfare cutbacks, health privatisation, environmental degradation, and racism and discrimination for example. An idea also supported by Scambler (2015) who has called for “a coming together of activists for change.” Any developing collective spaces of resistance, however, must include and empower the people who bear the brunt of the pervasive processes of exclusion. Equity in academic practice, as advocated by the Politics of Health Group(2015), seems likely to support the search for conceptual alliances.  For Williams, it seems this dialogue presents the prospect of alliances that can offer effective resistance to social injustice and can help to create transformative alternatives of the future. It seems crucial that these coalitions can present their claims with one – louder and more coordinated – voice.

References

Burawoy, M., 2005. For Public Sociology. American Sociological Review 70(1) 4-28. doi: 10.1177/000312240507000102

Politics of Health Group (2015). Health Politics as if People Mattered 2. Good Practice in Academia. Retrieved December 2, 2015 from http://www.pohg.org.uk/support/downloads/goodpractice_ac.pdf

Scambler, G., 2015. Triggers for social change. Retrieved December 2, 2015 from http://www.grahamscambler.com/triggers-for-social-change/

Williams, F., 2015.Towards the Welfare Commons: contestation, critique and criticality in social policy, in Z. Irving, M. Fenger and J. Hudson (eds) Social Policy Review 27 93—111.

 

Image by Steve Rhodes under a Creative Commons License


Relationship between poverty and stress, low level anxiety and depression across the life course

Co-Investigators: Dr Sue Baxter, Professor Paul Bissell, Dr Hannah Fairbrother, Professor Liddy Goyder, Professor Sarah Salway, Professor Jeremy Wight, Helen Woods

Funder: Joseph Rowntree Foundation

This project explores  the relationship between poverty and stress, low level anxiety and depression across the life course. It aims to provide an evidence base that the Joseph Rowntree Foundation can use in developing its antipoverty strategies, and wider work on the role of individuals and their relationships in reducing poverty. The primary focus is on providing a clear picture of the current evidence and a greater understanding of how poverty and stress, low level anxiety and depression are connected. For the purposes of this study, poverty is defined as the situation where an individual’s resources, especially material ones, are substantially below their needs.

Aim:

  • to conduct a multidisciplinary systematic review of the relationship between poverty and stress, low level anxiety and depression across the life course.

Objectives:

  • Use innovative review techniques to manage diverse evidence sources.
  • Develop a logic model to provide a concise summary of the available evidence and explore the implications for effective policy and practice.
  • Consultation with community and professional stakeholders to ensure validity and relevance.

Image courtesy of Christian using a Creative Commons license


CATH-B Study

CATH-B Study (Chinese community Access to Treatment for Hepatitis-B). Identifying and addressing barriers to healthcare access for Hepatitis B in UK Chinese populations.

Funder

Policy Research Programme, Department of Health – (NIHR adopted)

What are the aims of this project?

This study aims to identify drivers for the gap in healthcare access and provision for Chinese residents living in the UK by discussions with both the community and health professionals serving them.

Why is this important?

Migrant Chinese communities’ prevalence of Hepatitis B infection approaches 10%. South Yorkshire Chinese residents constitute 0.2-1.3% of the population. UK and international studies demonstrate low access to local health systems and many cases of late diagnosis.

How will the research be carried out?

The project methodology combines inductive qualitative research methods with knowledge translation approaches to (i) generate new insight into the barriers and supports to appropriate healthcare access for Hepatitis B among high prevalence groups and (ii) apply this evidence to the development of potential interventional strategies at policy and practice level. Qualitative methods will comprise: Focus group discussions (FGDs) with members of the Chinese community; Key informant interviews with members of the Chinese community; Individual interviews with healthcare professionals involved in key areas of care and policy formulation.

Timeframe:

Due to be completed by the end of 2015

Who is undertaking the research?

Sheffield Teaching Hospitals NHS Foundation Trust

Lead Investigator: Alicia Vedio
Co-investigators: Ben Stone, Steve Green

School of Health and Related Research, University of Sheffield

Principal Investigator: Andrew Lee
Co-investigators: Eva Liu, Sarah Salway, Jason Horsley, Elizabeth Goyder

How are stakeholders being engaged?

Study design and recruitment advice via public consultation and appointment panel for Research Fellow – Sheffield Chinese Community Centre
Research Advisory Group – Two members belonging to UK Chinese Community Groups.
Design of Information Sheet and Consent Form via STH Research Patient and Public Involvement Group – Two members of such panel of Far East origin

What will be the outputs from the study?

Identifying common themes both in the community and professionals will inform efforts to design and evaluate support tools for the community and professionals involved, and help to formulate policy to address service gaps.

Find out more here:

http://hitsheffield.org/research

http://public.ukcrn.org.uk/Search/StudyDetail.aspx?StudyID=16562

http://www.invo.org.uk/resource-centre/research-project-database/research-project/?id=807

 

 

 


 


Tailoring physical activity interventions to meet the needs of minority ethnic groups in England

This project is supported by CLAHRC YH

Aims of this project

  1. To establish the characteristics of physical activity interventions/programmes that prioritise minority ethnic community participation in England
  2. To identify the characteristics of ‘tailoring’ of interventions that account for minority ethnic population needs

Why is this important?

Adapted public health interventions have widespread support as a means of challenging health inequity. Minority ethnic populations in the UK and across the Global North continue to display disadvantage in several health domains such as cardio-vascular disease and diabetes (Bhopal 2009). Physical activity interventions can play a positive role in reducing the risk of such conditions. Rates of participation in physical activity among minority ethnic populations are, however, low relative to the White British population in the UK. This research uses an existing national database to examine the characteristics of physical activity interventions intended for diverse populations. It is an opportunity to assess the current ‘state of the field’ and areas of emergent practice.

How will the research be carried out?

Analysis of an English database of physical activity interventions has been used to identify and analyse adaptations for minority ethnic participation. From this, case studies have been built to demonstrate good practice.

Timeframe: November 2014-December 2015

Who is undertaking the research?

Liz Such

How are stakeholders being engaged?

Stakeholders are being consulted in the identification and exploration of case studies and in ‘sense checking’ of the findings on adaptation.

What will be the outputs from the study?

A case study summary will be produced for consultation with community based organisations and other local partners. A peer reviewed journal paper.