Media representations of disabled people

Posted by Laura Navin, Health and Social Care student, Northumbria University

Picture by Laura Navin

Negative media representations of disabled people still exist in society and this needs to be addressed. I have dyspraxia which is a learning difficulty, and I sometimes struggle with my co-ordination, communication, processing and speed but it has not stopped me from achieving my goals!

In the media, disability tends to be portrayed through a medical or deficit model, with disabled people often treated as pathetic.^1,2,3 TV charity shows such as Children in Need encourage pity for disabled people² and people with disabilities are still seen as “the heavy burden of care”; “the helpless victim”.³ Yet even when well-meaning, encouraging pity is discriminatory as it creates stereotypical and negative assumptions about disabled people². These negative representations can decrease a disabled person’s self-esteem and make them feel like they are not part of society.^1,4

The issue is heightened by the absence of disabled people and their voices within mainstream media which might help to reclaim the narrative and counter negative stereotypes. As Caroline Casey, founder of The Valuable 500, a global movement putting disability on the business leadership agenda, has suggested “from daytime TV to adverts on social media, to the articles which publications run, representation and visibility of persons with disabilities simply does not reflect our society”. This was brought to light recently for example, when Sia’s decision to cast a neurotypical actress in the role of an autistic female protagonist in her upcoming film was widely criticised.

There are more positive portrayals of disability in the media however. Harry Potter star, Daniel Radcliffe has dyspraxia and acted as an inspiration to many when saying, “do not let it stop you. It has never held me back.”. In 2018, Lee Ridley from the North East won Britain’s Got Talent and in 2021, EastEnders star Rose Ayling-Ellis became the first deaf contestant on Strictly Come Dancing. Even these more positive representations are emblematic of the failure to represent disabled people as everyday, ordinary citizens however. As Lee Ridley claims, “Our government has a very weird relationship with disabled people. We are either seen as superhuman or as some sort of burden”.

Portrayals of disabled people as a burden on society have been shown throughout both austerity and the Coronavirus pandemic. Disabled people have been mocked as ‘scroungers’ in television shows and newspapers, with arguments that incapacity benefit had become a ‘lifestyle choice’ for the lazy, and that a disability benefit crisis was responsible for the UK economic crash resulting in the disproportionate targeting of disabled people within austerity measures.^5,6 Covid has been argued to be one of the biggest media outbreaks medicalising disabled people.^1,7 During the pandemic, disabled people were seen as ‘vulnerable’ and had to isolate from society.^5,8 ‘Vulnerable’ is a label that is often rejected by people with disabilities and its adoption does not portray the importance of disabled people’s rights and viewpoints.⁹ Labels such as ‘vulnerable’ or ‘immunocompromised’ when used to explain differential susceptibility to illness have also been argued to result in an unreasonable, unpleasant message about the value of disabled people’s lives. The sunflower lanyard which could be worn by disabled people to show they were exempt from wearing face masks helped in some ways to increase disability awareness and create more understanding, support and respect towards disabled people. However, this is another form of labelling, and not all disabled people want to identify their disability to the world. Greater understanding and training on disability ethics is urgently needed to avoid this sort of discrimination and support disabled rights more systemically.^9,10

 

It is also important that disabled voices are heard in society and that the media represents disabled people in a more positive light. Sometimes when I tell people about my dyspraxia they feel pity for me, but this is not what I want. I am telling my story to inspire others, not create sympathy, so please do not feel sad for me, feel happy for me! I have succeeded in my academic studies and graduated from university with second-class honours as a student with dyspraxia. I have been involved in podcasts and dissertation writing to raise my voice as a disabled person and in doing so I hope to give others the confidence to do the same. I am now studying for a postgraduate certificate in education (PGCE) to teach health and social care. I hope to continue to raise my voice and to inspire others.

Part of our Fuse blog Student Series

The Fuse blog Student Series showcases posts by students who have been challenged to write a blog as part of their studies at one of the universities in the Fuse collaboration, the NIHR School for Public Health Research, or perhaps further afield. The authors may be new to blogging and we hope to provide a 'safe space' for the students to explore their subject and find their voice in the world of public health research.

The views and opinions expressed by the author are those of the author and do not necessarily reflect those of Northumbria University or Fuse, the Centre for Translational Research in Public Health.

References

1) Cameron, C. (2014) Disability Studies: A student’s guide. London: SAGE Publications Ltd.

2) Barnes, C. (1992) Disabling imagery and the media: an exploration of the principles for media representations of disabled people. Halifax, England: The British Council of Organisations and Disabled People and Ryburn Publishing Limited.

3) Goethals, T. et al. (2020) ‘I am not your metaphor: frames and counter-frames in the representation of disability’, Disability & Society, 12 (1), pp.1-19. DOI: https://doi.org/10.1080/09687599.2020.1836478.

4) Casey, C. (2020) ‘Where all the disabled people on screen? We must increase representation or risk reinforcing damaging stereotypes’, Independent, 1 December. Available at: Where are all the disabled people on screen? We must increase representation or risk reinforcing damaging stereotypes | The Independent (Accessed: 22 March 2022).

5) Ryan, F. (2019) Crippled: austerity and the demonization of disabled people. London: Verso.

6) Briant, E. et al. (2013) ‘Reporting disability in the age of austerity: the changing face of media representation of disability and disabled people in the United Kingdom and the creation of new ‘folk devils’, Disability & Society, 28 (6), pp.874-889. DOI: 10.1080/09687599.2013.813837.

7) Shakespeare, T. et al. (2021) ‘Triple jeopardy: disabled people and the COVID-19 pandemic’, The Lancet, 397(10282), pp.1331-1333. DOI: https://doi.org/10.1016/S0140-6736(21)00625-5.

8) Courtenay, K. and Perera, B. (2020) ‘COVID-19 and people with intellectual disability: impacts of a pandemic’, Irish Journal of Psychological Medicine, 37, pp.231-236. DOI: 10.1017/ipm.2020.45.

9) Singh, S. (2020) ‘Disability ethics in the coronavirus crisis’, Journal of Family Medicine and Primary Care, 9 (5), pp.2167-2171. DOI: 10.4103/jfmpc.jfmpc_588_20.

10) McLean, S. and Williamson, L. (2007) Impairment and disability: Law and ethics at the beginning and end of life. Oxon: Routledge-Cavendish.

(Re)taking liberties: Reclaiming positive freedom as a public health argument

Posted by Jack Nicholls, Lecturer in Social Work at Northumbria University

At the time of writing, the government intends to lift most remaining Covid restrictions still in place in England on July 19, widely touted as 'Freedom Day'. 

I recently passed my PhD viva defending a thesis that was concerned with the diverse ways a contested value concept is understood by human welfare professionals (in my case, 'social justice' and newly-qualified social workers). As a result of that undertaking, I am now habitually critical of the ways in which ethical and moral language is used and claimed for particular agendas. In the looming shadow of so-called 'Freedom Day', I have been thinking about how caring professions and health and wellbeing researchers might reclaim the word 'freedom' for ourselves.

Possibly in contrast to many of my wonderful colleagues in the caring professions and their associated research wings, I am in broad terms a libertarian rather than a collectivist*. Individual rights and freedoms - the ability to live as one chooses unfettered without just cause, to be different, to not fit or conform - are close to sacred to me. While I can be persuaded by arguments advanced by those of a more communitarian mindset, it is always despite, rather than because, they are communitarian. When, as I will here, express concern about the speed and totality of the easing of Covid restrictions, I do so from a liberty-minded philosophical position.

The 'Freedom Day' discourse draws almost entirely on the concept of negative liberty and is emblematic of a long-established idiolect that frames freedom (with personal responsibility) in a zero-sum game against statutory entitlement to and provision of help. Negative liberty refers to the absence of constraint and control. As an idea, it is of profound importance for those of us who believe rights and freedoms are inherent to personhood, and that it is for the state to uphold them, not hand them down as bounties and favours.

Sir Isaiah Berlin 

Alongside negative liberty however sits the concept of positive liberty (both liberty concepts were set out by Sir Isaiah Berlin (pictured right) in his 1958 lecture and subsequent written works). Positive liberty refers to the idea of freedom being enabled by active action and the provision of resources, facilities and support. The two work in tandem and, for the kind of libertarian I am, they are equally important and necessary for one another. Covid restrictions have impacted both our negative and positive liberties - the former by restricting our movement, travel and association, the latter, at least for many people, by restricting our incomes, our ability to access welfare, social security, safe transport, childcare and informal support networks.

The rationale for these actions, a rationale that was broadly accepted by the majority, can be understood as a trade-off with other positive freedoms, most notably seeking to keep as many people as possible, and particularly those at most risk of developing serious or fatal Covid symptoms, free from infection. It is a trade-off I would make again in a heartbeat under similar circumstances. That is part of why the present language about 'Freedom Day' is so galling, because for many, particularly those with high-risk health conditions, their families, and those who have not yet been able to be vaccinated, July 19 will not signal any kind of freedom. I can't tell you how much I'm looking forward to my first liberated Guinness, enjoyed in the hostelry and company I choose, with all the health risks confined to the pint glass. I can't do that on July 19, because the decision has been made to prioritise the negative liberty of those of us who can enjoy it over the positive liberty of those still at particularly serious risk. We aren’t choosing freedom; we are choosing some people’s freedom over that of others.

This situation behoves health and social service practitioners and researchers to consider whether we can reclaim the concept of freedom, particularly positive freedom, as a full and proper part of our value base and lexicon. I argue that we both can and should, for what are we if not participants in endeavours for more positive freedom through greater knowledge and better health and wellbeing. Freedom 'from' is fairly hollow and useless without meaningful freedom 'to', and though many who share my philosophical persuasion see an overbearing state as a legitimate risk to freedom of all kinds, no less important is freedom from preventable illness, pain, anxiety, suffering, burden, loss of control, and the wider contributors to health inequities, not least poverty and postcode.

Our professional fields, with the best of intentions, often couch our arguments in terms of the community or public good. Without besmirching the place and value of those arguments, it is my view that were we to speak also in terms of freedom, including individual freedom, we would do so with complete intellectual coherence and legitimacy. Rather than being unjustly tagged as over-cautious and dictatorial, we could put our criticism of the end of restrictions in pro-positive freedom language. Beyond that, we could reframe and bridge the unfounded but perceived gap between individual choice and public wellbeing, all while avoiding the former being reduced to callous responsibilisation, and the latter being unfairly painted as nannying control. We might even unlock a new set of tools for persuading individuals and institutions who are rarely engaged by welfarist, collectivist or even duty of care arguments about public health concerns. We've done it before; we rarely talk about the smoking ban nowadays, rather we refer to pubs and train stations being smoke-free. Likewise fat-free, alcohol-free - it's a nice word, and an effective one.

At this moment, whatever their diverse feelings about the end of restrictions (I should caveat, the end for some) freedom is high in the public consciousness. Let us who are concerned for public wellbeing liberate our arguments and reclaim the concept of freedom, particularly positive freedom, for ourselves.

*Collectivism: a social pattern in which individuals construe themselves as parts of collectives and are primarily motivated by duties to those collectives. More here: https://plato.stanford.edu/entries/culture-cogsci

Images:

1. Courtesy of Pixabay: https://pixabay.com/illustrations/bird-cage-aviary-freedom-flying-730478

2. Sir Isaiah Berlin by Rob C. Croes (ANEFO), CC0, via Wikimedia Commons

The views expressed in posts are those of the authors and do not necessarily reflect those of Fuse (the Centre for Translational Research in Public Health) or the author's employer or organisation.

When, what and how to engage and disseminate research evidence during a pandemic?

Posted by Peter van der Graaf, Teesside University, Jenni Lynch, University of Hertfordshire, and Liz Such, University of Sheffield, three NIHR Knowledge Mobilisation Research Fellows

In this blog, we share lessons from working with local authorities on the development of action learning sets (bringing people together to reflect on research evidence) when they are faced with the many challenges of COVID-19.

Why do we need action learning? 

(Best-laid plans)

We know that local authorities value research evidence to improve their decision-making about public services in times of austerity; however, making evidence fit for purpose and getting it actively used in local government remains challenging.

So, we decided to test a potential new approach to knowledge mobilisation by convening and supporting action learning sets (ALS) across three local authorities (Hertfordshire, Gateshead and Doncaster Councils). This was supported by the NIHR Centre for Engagement and Dissemination (NCED), which not only aims to share knowledge and outputs from NIHR-funded research, but to develop the evidence base about “what works” in knowledge mobilisation.

The ALS would bring together a group of approximately 15 stakeholders in each local authority, including public health and social care commissioners, front-line practitioners, third-sector representatives, service users and local academics to reflect on research related to a priority topic of their choice. Using deliberative dialogue, including structured questioning and reflection, participants explored different types of knowledge and relationships between knowledge producers, users and mobilisers. By applying this approach, the ALS aimed to help mobilise research and other forms of knowledge on wellbeing and equity in local government into collectively agreed action plans.

As we started discussions with our local authority partners in Spring 2020, the full implications of the COVID-19 pandemic hit. Despite various attempts to start the ALS we regrettably had to decide to abandon the project in its current form. In this blog, we share our lessons from working with the local authorities on the development of ALS during a pandemic and what this means for future knowledge mobilisation activities from NCED when engaging with public health and social care. Our reflections focus on the when, what and how of knowledge mobilisation with local authorities.

Research capacity during a pandemic: unethical conversations? (When)

What the pandemic taught us is that when public health and social care research is most needed (e.g. to inform the response to COVID-19), capacity for using this research is very limited. With local authority staff being spread thin and reassigned to other parts of their councils, it was not feasible and even borderline unethical to ask them to join and prepare for action learning set (ALS) meetings. In particular senior staff within local government, who are key participants for the ALS, were in some cases absent from our early conversations. A serious question was posed: 

"How could we mobilise research evidence to help local government in their response to COVID-19, when they hadn’t got the time or mind space to even look at a one-page summary brief?"

We tried to make the process more accessible by moving the ALS meetings online, involving smaller groups to optimise interaction (five instead of 15 participants) and shorter sessions, with individual activities and reflection time between sessions. This helped to some extent to engage with local authority partners, but the capacity problem remained and even short online meetings where often not feasible for senior staff. However, it illustrated the value of a blended approach to ALS with a potential combination of online and face-to-face sessions to allow stakeholders to engage differently at various times in the process. We also urged them to consider topics that were immediately relevant to their current situation, e.g. working virtually through the pandemic.

The need for relevant evidence (What)

The Hertfordshire County Council Social Work team chose to reflect on how to interpret the Mental Capacity Act and apply strengths-based approaches when discharging patients from hospitals into the care of local authorities (discharge to assess pathways). Strengths-based approaches are a collaborative process between service users and providers to determine an outcome that draws on the person’s strengths and assets. We found a small number of NIHR funded studies but also identified useful knowledge from other sources, such as a Health Services and Delivery Research (HS&DR) Evidence Synthesis Centre Topic Report, which provided a systematic review of evidence on different strengths-based approaches within adult social work, and guidance documents produced by a law firm.

Knowledge Mobilisers Assemble!

Similarly, Gateshead Council selected the topic of community-based approaches to public health, focusing on how to implement these approaches with staff within the Council across different departments by applying a whole system approach. We were able to identify relevant work through our network of NIHR-funded Knowledge Mobilisation Research Fellows. For example, researchers at the University of Hertfordshire had teamed up with Hertfordshire County Council to set up a whole systems programme team and developed a joint masterclass on the topic that summarised the latest evidence.

This illustrated a need to tap into a wide range of databases that included studies and evidence from sectors beyond health and links to a network of knowledge mobilisers to access ongoing work and publications that were not routinely published on scientific databases. We plan to support this in the development of our own website as Knowledge Mobilisation Research Fellows united in the Knowledge Mobilisation Alliance.

Localising and tailoring of evidence: the value of dialogue (How)

Thirdly, our conversations with partners about the planning of the action learning sets (ALS) demonstrated that local authority staff value conversations with academic researchers about the meaning of research and how-to tailor evidence to their local needs. Evidence is made fit for local commissioning and planning purposes by localising it (relating evidence to local context and needs) and tailoring it (presenting actionable messages). ALS provide a mechanism for this translational activity and a collaborative space for local authority staff to take time out from their busy jobs and reflect on research evidence (and other types of knowledge).

Constructive dialogue was seen as most useful in supporting decision
 making, instead of researchers parachuting in with findings   

Various staff members in local government who we talked to were already research active, engaging with research through conferences and some by undertaking PhD studies themselves. They were already mobilising local intelligence, national data and tacit knowledge in their decision making. Instead of academic researchers parachuting in with their research findings, constructive dialogue about the meaning of different types of knowledge - and where researchers and practitioners worked together as equal partners - was seen as most useful for supporting local government decision making. Facilitated conversations over a series of meetings would enable them to effectively blend different types of knowledge together to inform the commissioning of health and social care services.

Being humble and open to challenge and dialogue are key components of any knowledge mobilisation strategy for engaging with local authorities and dissemination of health research findings.


More commentary on action learning sets and engaging with local authorities in knowledge mobilisation below:

• Escobar O, Faulkner W, Rea HJ. Building capacity for dialogue facilitation in public engagement around research. Journal of Dialogue Studies. 2014;2(1):87-111. http://www.dialoguesociety.org/publications/Journal-of-Dialogue-Studies_Volume-2_Number-1.pdf#page=89

• Pounder T. Using action learning to drive organizational learning and performance. Strategic HR Review. 2009 Apr 17. https://www.emerald.com/insight/content/doi/10.1108/14754390910946530/full/html

• Van der Graaf P, Cheetham M, Redgate S, Clare H, Adamson A. Co-production in local government: process, codification and capacity building of new knowledge in collective reflection spaces. Workshops findings from a UK mixed methods study. Health Research Policy and Systems. 2021 Jan;19(12). https://rdcu.be/cesKm

• Van der Graaf P, Blank L, Holding E, Goyder E. What makes a ‘successful’ collaborative research project between public health practitioners and academics? A mixed-methods review of funding applications submitted to a local intervention evaluation scheme. Health Research Policy and Systems. 2021 Jan;19(1):1-3. https://rdcu.be/cdWGC

Images:

1. "… of Mice And Men …" by Kristian Bjornard via Flickr.com, copyright © 2010: https://www.flickr.com/photos/bjornmeansbear/4294131461 (CC BY-SA 2.0)
2. Pat Loika, CC BY 2.0, via Wikimedia Commons

Actions bring risks

Posted by Llinos Mary Jehu, Research Associate with AskFuse, and Pat Watson, Research Fellow, Teesside University

We all know that. At a time when many of us are returning from holiday (or conference), we can reflect on the risks we took, like driving to the airport or eating sea-food.

So it’s no surprise that participatory action research brings risks. Co-researchers may be exposed to the risks that academics frequently anticipate, such as risks arising from lone-working or the emotional impact of data collection and reflection. There are also risks associated with research being carried out by people who have not been trained to the level of an academic, such as confidentiality, informed consent or interviewing techniques.

I’ve been involved in participatory action research at two universities, as well as within the NHS and local government. I’ve been through university ethics and NHS ethics, jumping through hoops as we’ve recruited and trained co-researchers, often re-submitting so we can finally start collecting and analysing data. I’ve also spent a fair amount of time getting to grips with systems for paying co-researchers expenses and honoraria. It’s amazing how complicated getting agreement to give out some supermarket vouchers can be, as both the ethical risks and financial risks are apparently enormous.

For all these projects, risk was removed, reduced or managed through our training and support systems. The training sessions allowed potential co-researchers to build their understanding of what the research involved, giving them an opportunity to opt-out should they choose. The sessions also built open, trusting relationships which, very occasionally, allowed us to identify and counsel people away from the project and signpost them to other opportunities. These relationships were vital during data collection periods. We may have drunk gallons of coffee and eaten far too much cake, but frequent, informal meetings with co-researchers ensured we kept a handle on what was happening in terms of ethics, finance and lone-working.

Consequently, I was a bit thrown when AskFuse - the responsive research and evaluation service run by Fuse - received a query from Pat Watson at Teesside University. Pat’s been commissioned by Sunderland City Council to carry out a piece of participatory action research involving pregnant mums in the design, development and implementation of a project looking at how expectant mums make decisions on how to feed their babies. The university Ethics committee had asked about insurance for co-researchers, and we had to admit that no one in the AskFuse team had any examples of formal arrangements. I also had a slight concern that, given the risk-averse nature of many large organisations, such a requirement might pose an insurmountable barrier for the research proposal. Undeterred, Pat went on the hunt, with a meandering email trail that eventually reached the University’s Deputy Director of Finance and the Liability Underwriter for the University’s insurers, UMAL. To my absolute surprise and delight, they confirmed ‘that the Teesside University Employer Liability/Public Liability/Public Indemnity covers apply to all University authorised research activity’. If Ethics approve participatory action research, then the co-researchers are insured.

It’s a huge relief that we now have a tick to put in the required box, and we have an example to cite should another researcher be asked the same question. I am really impressed with the approach of the insurance company: as their website states, they ‘never shy away from difficult risks’. However, managing risk in participatory action research requires far more than ticking boxes, regardless of how important these boxes may be. An equally important tool for identifying and managing risk is the strong relationships that successful co-research depends on. These relationships require time and investment, going to where people are and being prepared to share their space. They require trust and respect; possibly not asking people to show you a receipt before you pay their bus fare and not assuming that they’ll use their supermarket voucher to buy cider.

Research tools, data collection and analysis will be different, and often better, when the research process involves or is led by people who share the same standpoint, or even are, the research subjects. Hopefully universities will continue to recognise the benefits of participatory action research, recognise that the relationships it generates are a valuable asset and tool for managing risk, and not shy away from any ‘difficult risks’ it may present.


Image: 'victorian risk assessment cartoon' by John C Bullas BSc MSc PhD MCIHT MIAT via Flickr.  Attribution-NonCommercial-NoDerivs 2.0 Generic (CC BY-NC-ND 2.0):
https://www.flickr.com/photos/johnbullas/7788230372

Sleepless in the slammer

Charlotte Randall, Higher Assistant Psychologist and MSc student, Northumbria University

The current prison population is 85,641 and around 50% of this population suffers from symptoms of insomnia. While this is similar to the general population there are a limited amount of resources to help treat this disorder in prisons.

Having worked in prisons for seven years, I am all too familiar with the problems that a lack of sleep can have on an offender's ability to engage with the prison regime, and the impact this has on their mental health. Due to the high prevalence of mental health problems, substance misuse and personality disorders in the prison population, the issue of sleep is often side-stepped and the importance of obtaining and having a healthy sleep practice can be forgotten about.

I am part of the Mental Health In-reach team in a prison in the North East, and have witnessed first-hand the effect poor sleep can have on an offender’s mental health. As this is an under-researched area, I decided it would be interesting and beneficial to conduct research on insomnia in the custodial setting. The aim of the study was to see whether a 60-70 minute session of Cognitive-Behavioural-Therapy for Insomnia (CBT-I) with an accompanying self-help pamphlet was an effective treatment in reducing the symptoms of insomnia in male prisoners.

As I work in the prison Mental Health Team full time, I thought this would be a simple project to undertake, however there were several hurdles along the way. Firstly I was required to gain ethical approval from several different organisations; NHS; National Offender Management (NOMS); and the University. Offenders are classed as a vulnerable population for research purposes, and therefore there is heightened scrutiny from ethic boards as a result of this. This process was lengthy; I had to complete three separate documents explaining the project’s benefits for each organisation. Once submitted, I was required to attend a full Research Ethics Committee (REC) where the research protocol and IRAS (Integrated Research Application System) form were discussed and additional questions were asked. It was then a waiting game to see whether the study had been granted ethical approval. As with any research project there was a deadline of September 2016, in which my dissertation needed to be submitted. Ethical approval was granted in June 2016, after recommendations had been made by the NHS and NOMS ethic boards and an amendment report was submitted.

On the other hand, recruitment for the study was relatively easy, which surprised me! Although it also identified the need for insomnia interventions in the custodial setting and confirmed that this research was important. The offenders were keen to engage, due to the lack of pharmacological (drug related) and psychological interventions for insomnia they were eager to find something that helped them sleep.

Results from this research were positive and highlighted that there was a significant reduction in insomnia related symptoms after completing the 60-70 minute session of CBT-I, with the accompanying self-help pamphlet with category C adult male prisoners. This research is the first of its kind to assess whether an adapted versions of CBT-I is effective in the prison population, where there are limited interventions and resources to help aid sleep disturbances. Although the results were positive, they have to be taken with caution as the prison where this research was undertaken has a unique regime and all prisoners are in single-cells which allowed them to complete certain aspects of CBT-I e.g. sleep restriction.

My experience of completing this research was positive; I enjoyed the prospect of analysing an undiscovered area and hopefully informing academia and practice within a public health setting. I did however find it hard in the early stages of this project, specifically going through the ethics process and length of time this took. A written report has been disseminated to NOMS highlighting the findings of this research. It also identifies how this research could be taken forward and inform future research opportunities. The single session of CBT-I is being delivered in the prison where the research was completed, more data is being gathered and will hopefully be published in 2017.


Photo attribution:

1. “sans horizon” by poirpom via Flickr.com, copyright © 2015: https://www.flickr.com/photos/poirpom/16479845789/
2. “prison” by erin via Flickr.com, copyright © 2007: https://www.flickr.com/photos/insunlight/1037277952
3. “Insomnia” by Ben Harrison via Flickr.com, copyright © 2011: https://www.flickr.com/photos/48755144@N02/5564362009

The challenges (and joys) of evaluating babyClear©: a package of support to help pregnant women to stop smoking

Guest post by Sue Jones, Research Associate, Teesside University

A team of Fuse researchers from Newcastle and Teesside Universities published findings from the babyClear© study a few weeks ago and I thought that I’d put finger to keyboard to share with you the challenges and joys of evaluating the roll out of this innovative intervention.

In 2012, I became involved with evaluating babyClear©, a package of support for maternity and stop smoking services, designed to help them to deliver the stop smoking message more effectively to pregnant women. BabyClear© was due to be rolled out regionally across North East England and evaluated throughout, which presented a number of challenges:

• Challenge 1: different research questions – we wanted to know if this new approach worked and would it help women quit but we knew that this would not be enough; we wanted to understand what influenced those figures, and what healthcare staff need to do to be most effective.
• Challenge 2: ethical dilemma – ethically we could not deny pregnant women a test like carbon monoxide monitoring that was known to improve outcomes to some degree, so the regional rollout of babyClear© offered a prime opportunity to evaluate the intervention using a natural experiment1.
• Challenge 3: wide variety of stop smoking delivery models – the extent of austerity measures experienced by the public sector has been far greater than anticipated when the research was envisaged in 2011. At the same time responsibility for delivery of stop smoking services has been moved to local authorities who themselves are under extreme pressure to reduce spending. This has created a wide variety of stop smoking delivery models, all trying to provide a low cost service but with implications for the implementation. For example: babyClear© was designed to be a package that could easily slot into existing services, however it assumed a number of systems were standard when they were not, such as a midwife available at dating scan appointments and a local stop smoking specialist in pregnancy. All those Heinz 57 varieties of stop smoking service delivery models and systems within maternity services, each one different from every other, made it logistically challenging to implement the new pathway, leading to delays of varying lengths in each Trust area.
• Challenge 4: researching within a changing system – due to ongoing changes largely in the delivery of stop smoking services, but also in maternity, and their impact on the implementation of babyClear©, data collection plans had to be re-thought again ... and again ... and again to reflect what was happening out in the real world! 

We were greatly helped in approaching some of these challenges by the publication in 2014 of the Medical Research Council (MRC) Guidance on process evaluation of complex interventions. Using this guidance, we were able to start re-shaping our thinking in terms of how the qualitative data could be used synergistically with the numerical data. We set about strengthening the methodology with a retrospective logic model, weaving contextual data into the mix and with an eye on the mechanisms of impact.

After overcoming these challenges, along came the joys: the findings of our study proved that babyClear© was not only effective but also cost-effective, which was a great achievement in such a short timescale. This new approach, which supported midwives to offer universal carbon monoxide screening and refer pregnant smokers quickly to expert help, nearly doubled quit rates.

The findings highlighted that we could systematically help women to stop smoking in pregnancy which will result in already well-evidenced outcomes such as:

• Help mothers have babies who are heavier and healthier than if they continued smoking
• Help more mothers lead healthier lives
• Help mothers live longer and see their children grow up
• Help the children to live and run and grow up surrounded by smoke free air; and 
• Enable them to not be held back by smoking-related poor health

So have a read of our paper, this has the nitty-gritty of the statistical outcomes.

Importantly, soon we hope to be publishing the details about the how, what, when, where, why questions that were the focus of the qualitative process evaluation. Without this it is difficult to know how to implement it elsewhere to best effect and why it works well in one place and not another.

Celebrate our findings with us; if the maternity and stop smoking services are able to use the babyClear© approach to implement best practice/national guidance it can offer the support that is needed so that more women stop smoking during their pregnancy than did before. So keep your eyes peeled for my next blog – which will focus on the findings from the process evaluation.


Reference:

1. “A natural experiment is an empirical study in which individuals (or clusters of individuals) exposed to the experimental and control conditions are determined by nature or by other factors outside the control of the investigators, yet the process governing the exposures arguably resembles random assignment”. (Reference: en.wikipedia.org/wiki/natural_experiment)     More info: Craig P, Cooper C, Gunnell D, Haw S, Lawson K, Macintyre S, Ogilvie D, Petticrew M, Reeves B, Sutton M, Thompson S. Using natural experiments to evaluate population health interventions: new Medical Research Council guidance. J epidemiol commun h. 2012 May 10:jech-2011.

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Research ethics. Why handbooks and guidelines don’t help.

Posted by Heather Yoeli

If you had asked me, before I began my PhD, to define research ethics, I’d have told you that ethics is about morals and values, about how and why we conceptualise, construct or differentiate right and wrong and about what we do with our judgments or perceptions of right and wrong – and that research ethics is thereby about how we promote the personhood and dignity and human rights of our subjects, and about how we know that what we’re doing isn’t going to harm them. I was idealistic, principled, and, fresh from a Religious Studies degree, prone to expressing my every academic thought in an 85-word sentence, and prone to using too many commas. These days, I’d define research ethics more succinctly, and less naively: it’s about placating the insurance companies by assuring your host institution that you won’t do anything that’d get them sued, and it’s about following the rules.

Within health academia, the contemporary drive towards research ethics developed primarily in response to the horrific atrocities committed during the clinical and epidemiological ‘research’ undertaken by Nazi doctors in the World War II concentration camps. In 1947, the Nuremberg Code was published, and in 1964, the Helsinki Declaration, most recently updated in 2008. Both of these documents provide clear standards and principles designed for researchers to interpret and apply with regard to their own contexts and situations, but never a how-to guide to manage every conceivable scenario. In conceptual terms, this is known as teleological ethics: advocating doing what is right, however this is to be achieved. But many people criticise teleological methods for their inherent lack of common-sense safeguards. For example, it’s great that the Helsinki Declaration tells us (Section A5) that we have a particular duty to those underrepresented in research, but how far can I go and what can I do to find the underrepresented of Cowgate?

Josef Mengele: one of the leading Nazi doctors in the medical research programme at Auschwitz

Within the UK academic community, research governance has appropriated responsibility for ethics, ensuring that every university, NHS Trust and Local Authority produces a detailed handbook of rules mandating what researchers should do in absolutely any situation they may encounter. In conceptual terms, they provide a deontological ethic: stipulating that the rules are followed, because rules are rules and the organisational insurance provider has set their premium on the understanding that the rules will be followed.

The problem, however, with such a deontological minutiae of rules is that it reduces research ethics to a vast set of forms to be completed and a prescribed sequence of actions to be completed. By depriving researchers of the capacity to think for themselves about what might be right or fair or appropriate in their own particular study, such handbooks prevent researchers from using their creativity to respond innovatively to the most vulnerable of participants.

Throughout the history of research, ethics has been an evolving, changing discipline, always discussing responding to the new challenges it is posed. A few years back we were considering whether it was ethical to accept typewritten student essays (in case somebody else had written it) and a few years before that we were considering whether it was ethical to accept women into medical schools (because the academic pressure might disrupt their menstrual cycles). Today we’re considering gene therapy and social networking, and the lesson from the history of ethics is that the generation below us will see no problem whatsoever with mitochondrial gene transplants or Facebooking study participants – assuming, of course, that mitochondrial disease and social media still exist. But when all of our ‘ethics’ comes distilled in a university or NHS-approved directive of ordinances simply to follow, and when we know that we’ll never get our proposal agreed without doing exactly what we’re told, it can be hard to innovate, or even to think. For example, I know that I should anonymise all data (Northumbria University Research Ethics and Governance Handbook, p.20), but am I not permitted to make an exception for the participant who says she will consent to participation only if I agree her real name when quoting from our conversations in my PhD thesis?

Or, to put it more succinctly, we’re all spending too little time thinking about how we can do the very best for our research participants because we’re all wasting too much energy poring through the rulebooks and filling in the forms.

Am I right? And if so, what does it mean that I’m right? And if I’m wrong, what do you mean? Discuss.