My passion for research comes from always asking "why?"

Posted by Pascal Landindome Navelle, FRSPH, Public Health Research Operations Officer and Doctor of Public Health Student at Teesside University.

In today's Fuse blog, Pascal gives his top tips for anyone starting out in research, and shares his own experience which began working with Fuse and Teesside University.

His advice? A passion for the "why?" question and accessing the right mentorship.

As part of the NIHR ‘Your Path In Research’ campaign.

 

After working as a clinician for several years, I felt that my impact on service users was limited. So, upon a thorough reflection, I was inspired to progress into public health research, where I felt I would have a broader impact on society.

Research work is fascinating as it provides a clear pathway to contributing to advancing the knowledge of the disciplinary sector to which I am dedicated. The importance of research should go beyond conceiving theoretical works that would only find a physical location in a library. Research should be "living", circulating, interacting, multidisciplinary, and impacting the environment.

What I enjoy about research is that it allows me to pursue my interests, learn something new, hone my problem-solving skills and challenge myself in several unique ways. Working on a faculty-initiated research project enables me to work closely with a mentor–a faculty member, and other experienced researchers. With a self-initiated public health research project, I can leave the community with a service that represents the distillation of my interests and studies and, possibly, a real contribution to knowledge.

There are many training and support systems that I have found valuable during my career. Researchers usually embark on increasingly diverse careers, where collaboration, networking and interdisciplinarity have become more important. Critical reading, academic writing and critical analysis are valuable training and support required of a researcher. Transferable skills, such as effective communication and problem-solving abilities, have helped me operate more effectively in different work environments.

Starting a research career can be daunting but exciting! The challenge of getting the support needed to achieve my dream came true when I enrolled at Teesside University for a research degree. This began by getting involved with AskFuse (Fuse’s responsive research and evaluation service) and with Associate Professor Dr Peter van der Graaf, working on an enquiry to evaluate Northumbria NHS Foundation Trust’s staff health and wellbeing resources during the pandemic, as part of my PhD research. This then led to working on the South Tees Arts Project (STAR) with Peter, a pilot study to co-produce wellbeing measures with primary school children, their parents, teachers, and artists for a school-based dance intervention. I supported the data collection, analysis and report writing for the STAR project as a Research Assistant and even wrote a song for the engagement activities with children in the research!

I had the opportunity of getting mentorship and some academic resources to enhance my knowledge. I connected and contacted very experienced researchers in the field of public health who supported my interest in growing as a research professional. Through the people I’ve met, I have had the opportunity to work on exciting but substantial research projects that have had a massive impact on the public health community.

My top three tips for somebody starting out in research are:

1. First and foremost, you should be motivated, passionate, and curious about your research topic – do it for science, not tenure! No one ever became a successful scientist with the sole premise of being awarded the Nobel Prize. And remember that plans rarely work out the way you thought they would.
2. Be prepared for a challenging career. Research is ever-changing. Be prepared for the change that research comes with strengthening your problem-solving skills to enhance the fun aspect of research. Problem-solving skills refer to handling difficult situations and overcoming complex challenges. They involve breaking a problem down into its parts, thinking critically about each element, analysing the information you find and using that information to form an effective solution. Having strong problem-solving skills will help make you an asset in your research practice and help you advance your research career.
3. Finally, be proactive, network and connect more with like-minded professionals. Sometimes, the key to getting to places is not what you know but who you know. We can learn a lot from talking to peers and senior colleagues. Attending symposiums, seminars and conferences is a great way to meet people who share common interests with you but have different experiences.

The NIHR has supported my career development through the provision of training, access to leadership development opportunities, networking events, mentoring and guidance on research funding.

The NIHR launched the Your Path In Research campaign this week. Better research leads to better services for the public. That’s why the NIHR want to encourage organisations and social care and public health professionals to play an active role in research, as a way to deliver even better services.

The Your Path in Research campaign highlights how people can make research part of their careers. Some amazing researchers have shared their experiences, how they started in research and what advice they can give to researchers that are considering adding research to their careers.

Take your first step in research today.

Dementia: not drowning but waving

Posted by Mark Parkinson, Post Graduate Student at Northumbria University

It's Dementia Awareness Week in England as part of Alzheimer’s Society’s ongoing campaign to raise public awareness of this disease. It also affords us the opportunity to take stock of just how far we have progressed since the dark days of the 1980s. Back then a mood of extreme pessimism surrounded dementia amid stark warnings that this ‘rising tide’ represented an unstoppable tsunami-like force that would engulf the UK. Attempts to avert the coming disaster were seen as futile and hopeless, akin to King Canute holding back the sea. The prevailing mood of despondency was ‘justified’ by nine fallacies of dementia emanating from a general lack of knowledge and understanding about dementia.


The Great Wave off Kanagawa

• Fallacy No.1: Dementia was commonly perceived to be part of ‘normal ageing’. Dementia is now widely acknowledged as a clinical condition characterised by neurobiological abnormalities that distinguish it from so-called ‘normal’ ageing. The public perception of dementia as a disease that is separate from ‘normal’ ageing is increasing in the UK but campaigns such as Dementia Awareness Week are still necessary.
• Fallacy No.2: Dementia is unavoidable. Protective factors that help guard against vascular dementia in particular include our lifestyle choices, including smoking cessation, regular exercise, adherence to a healthy diet and avoiding becoming obese. The identification of potential triggers for dementia paves the way for future interventions that might mitigate the onset of dementia entirely, including monitoring for catalysts for dementia such as cardio-vascular disease, obesity, diabetes and depression. Intervention programs targeting at-risk groups have demonstrated success in preventing dementia, e.g. FINGER (a two-year programme that focuses on diet, exercise, cognitive retraining and monitoring and treating vascular risk). Latest research also highlights further candidate triggers for dementia such as interleukin 33 (IL-33) protein deficiency which may be remedied via injections to prevent dementia.
• Fallacy No.3: Dementia is irreversible. Although this remains the case for now, the development of treatments such as Galantamine have been shown to at least moderate the effects of dementia.
• Fallacy No.4: Dementia is untreatable. The search for a cure for dementia remains ongoing and we have moved into an era where the potential discovery of better treatments and an eventual cure has never been so high. For now though prevention via identification of key triggers remains the main option in the absence of a cure.
• Fallacy No.5: Dementia is a diagnosis to mortality within seven years. Dementia related diseases such as Alzheimer’s now have a typical duration of 10 or more years and evidence suggests that, in general, people with dementia are living longer. The challenge continues to be ensuring they live as well as possible.
• Fallacy No.6: Dementia is too varied and unpredictable to treat. Greater understanding of the different sub-types of dementia, their different causes and symptoms, combined with improved ability to detect them makes treatment for dementia a more viable possibility.
• Fallacy No.7: Dementia is only detected when it is already too late to act. This remains a key issue; however, improved diagnostic tests and screening have improved early detection of the disease.
• Fallacy No.8: Dementia is too expensive to treat. Recent interventions such as Cognitive Stimulation Therapy (CST) can be delivered to people living with dementia via just 14 hourly sessions. CST has demonstrated equivalent but more sustained effects compared to relatively expensive drug treatments.
• Fallacy No.9: The number of those with dementia will increase exponentially in the future. Recent comparisons between CFAS1 (Cognitive Function and Ageing Studies) (1991) and CFAS2 (2015) conducted by Cambridge University reveal that dementia prevalence in the UK has actually declined by 22 per cent over this 24 year period. Those born in the latter part of the 20th century exhibit a lower risk factor for dementia than those born earlier. The tsunami warnings of the 1980s have been proven wrong.

Importantly, all this does not signal a time to relax. The need to raise awareness of dementia and the challenges associated with it remains as urgent as ever. In the 1980s a sense of urgency towards tackling dementia provided a much needed catalyst for change. Today a key difference is that this urgency is no longer fuelled by impotent fear but by renewed hope and optimism that galvanises fresh impetus to all our endeavours to beat the disease.

With acknowledgement to the inspired presentation on 25 April, 2016 at the first Gateshead Dementia Conference by Dr.Daniel Collerton (Clinical Psychologist associated with dementia care at The Queen Elizabeth Hospital, Gateshead).

Too stressed for words? Involving those experiencing stress in research

Post by Fuse members Natalie Forster, Senior Research Assistant, Northumbria University and Sonia Dalkin, Lecturer in Public Health at Northumbria University

On this National stress awareness day, we wanted to take the opportunity to reflect on the ethics of involving those experiencing stress in research.

Fuse researchers are currently undertaking a realist evaluation to understand how, when and for whom, Citizens Advice Bureau (CAB) interventions improve people's health. CAB provide independent, impartial, confidential, and free advice to everyone on their rights and responsibilities. This includes advice on debt, benefits, employment, housing and discrimination.

Changes to physical health take a long time to show, and are therefore difficult to capture in the evaluation timescale. The impact of CAB on stress therefore forms a core focus of the study. As we know already that stress is linked to many mental and physical health outcomes, determining if and how CAB services reduce stress should enable us to project the potential health impact of CAB.

At the point when people approach CAB, they are often under considerable strain. Two in three people accessing CAB services report feeling stressed, depressed or anxious as a result of the problem or problems that they are experiencing, more than one in five people have had to move home or are worried about losing their home, and almost one in five are experiencing difficulties in relationships with other people.

We have had much discussion as a research team, together with CAB staff, around how to design the research in a way that generates sufficient data to assess the impact of the service, but which remains sensitive to what clients are experiencing. Imagine a scenario for example, whereby you approach a service for help already under significant stress, you are anxious to resolve a financial problem, yet before you can start to address the issue you're asked to fill in a lengthy questionnaire about your health. Furthermore, CAB have projects specifically designed to support those diagnosed with cancer. In the case of CAB clients who are currently undergoing treatment for, or supporting a family member with cancer, stress is likely to remain in spite of addressing financial concerns, and to ask if their health has improved would be inappropriate.

These are just some of the issues we've been grappling with and which have informed our decisions about which client groups we invite to participate, when we contact potential participants, and what they can reasonably be asked to take part in. A decision was made for instance, not to include a project for patients and families with cancer among those being evaluated. Baseline questionnaires will not be delivered before, but rather during or just after clients’ initial appointments. The number of questionnaires clients will be asked to complete has been carefully considered and where possible, shorter versions of questionnaires have been used in order to avoid over-burdening participants.

That said, we're also conscious of the risk of excluding people from taking part by making too many presumptions about participant preferences. We have often reflected during involvement with previous research on how generously people have shared their time and experiences even when undergoing difficult circumstances. We therefore continue to consider the balance between participant protection and autonomy when recruiting potentially stressed participants. In research with people experiencing difficult circumstances, involving potential participants and organisations working with them in designing data collection strategies is key to ensuring their appropriateness.

Photo attribution: Photograph ‘Anxious 1’ (File ID #1431663) by Joana Croft via freeimages.com, copyright © 2007: http://www.freeimages.com/photo/anxious-1-1431663

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End of life care: looking through a different lens

Guest post by Joanne Atkinson, Director of Programmes, Northumbria University to coincide with World Palliative Care Day 2015.

When reflecting on my professional journey I often ask myself how did I get where I am today? The thing is your personal story has great resonance for you as a professional; this is an insight into my doctoral journey.

I have worked in palliative care for many years, firstly as a Macmillan Nurse in the acute sector, and then at Northumbria University teaching palliative care. Commencing a professional doctorate I had a stuttering start, but eventually arrived at where I am now with my research which is a study using Foucauldian discourse analysis. My research explores the influence and impact of emerging, competing and overlapping discourses on practice in end of life care, and provides insight into the discursive tendencies impacting on end of life care practice in the hospital setting.

Recent years have seen unprecedented media interest in end of life care, and the emergence of powerful discourses that influence health care professionals delivering care. My research focusses on the tensions, challenges and possibilities that emerge from this intersection.

You may recall some time ago the tragedy that occurred in Greater Manchester when Harold Shipman, a GP, killed his patients. The media coverage that occurred as a result of this has had a significant impact on the way in which doctors and nurses caring for people at the end of life. The public and other professionals questioned the prescribing of opiates for pain and symptom relief. This cultured the germ of a research idea. So my research journey started.

As I commenced my professional doctorate the media frenzy related to end of life care and the Liverpool Care Pathway developed, and I found myself at the cutting edge of end of life care. It is fair to say that I was taken aback by some the media outputs. 

I undertook an analysis of artefacts from journalistic press not tabloids (although this did include the Daily Mail!) and terrestrial television (factual outputs). Initially this was to be over a period of six months, but this was extended due to the profile of end of life care at the time. In addition tape-recorded narratives were taken from four consultants and six clinical nurse specialists working in palliative care, and a cancer centre. Participants recorded the narratives over a two-week period.

The media artefacts and narratives have reaffirmed the metaphorical language utilised when discussing end of life care, and highlighted the impact that the sensationalisation of end of life care has on practice, instilling a moral panic that both disables and fuels the need for change. Prominent discursive formations have emerged related to the power of representation and the impact on practice when caring for people at the end of life.

Back to my personal story which is inextricably linked with the research journey, having life happen throughout this research has no doubt enriched my understanding, but holding a very old man’s hand when he thinks he is going to be killed because he is so ill makes the impact discussed above so real especially when that very old man is your father.

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Photograph (5138623107_b05613223b_o) by More Good Foundation via Flickr.com © 2009: https://www.flickr.com/photos/moregoodfoundation/5138623107

Shielding against the impact of the dementia time bomb

Guest post by Mark Parkinson, Postgraduate Researcher, Department of Public Health & Wellbeing, Northumbria University

Today (September 21) marks the anniversary of World Alzheimer’s Day which aims to raise public awareness about this most common form of dementia.

Dementia represents one of the main causes of disability in later life. Current estimates indicate that someone is diagnosed with the disease every 68 seconds. Alzheimer’s affects 44 million people globally with this figure predicted to triple over the next 35 years - a phenomenon aptly named 'The Dementia Time Bomb'. Advances in health mean many more people are surviving life-threatening diseases such as cancer, but susceptible to life limiting diseases such as dementia.

By 2030 more than 20 million people in the UK will be aged 60 or over. For people familiar with dementia it is one of the diseases most feared as they approach 60 years of age, a fear justified given the increased prevalence of the disease once we reach this milestone, a fear heightened by the fact that it is irreversible and terminal.

The impact of all this truly hit home during a recent conversation with my mother. Renowned for her ability to trounce all-comers at Scrabble, she struggled to recall the word ‘padlock’ prompting her to quip, with mock seriousness, that perhaps she was succumbing to the disease. My mother’s perception of Alzheimer’s still follows a traditional and mistaken one that Alzheimer’s disease is a typical and therefore ‘normal’ part of ageing. She is not alone: it is estimated that around 60% of people worldwide also incorrectly believe this, while 40% of people mistakenly think it is not fatal. I on the other hand stopped dead in my tracks. The sudden realisation that my mother’s uncharacteristic memory block might genuinely be a precursor to the more serious cerebral ‘padlocks’ associated with dementia. As a researcher involved in dementia I was only too well aware that Stage 2 of the disease is generally represented by very mild cognitive decline, including deficits to semantic memory that can include a sudden inability to recall everyday words. Much worse though was my knowledge that the later stage of Alzheimer’s can be marked by far more severe symptoms as part of a terminal degenerative process that can endure for 15 long years. A key question ran through my mind at this point: who would care for my mother if she did develop dementia?

In the vast majority of cases it is a family member who will elect to take on this role. One in eight of the UK adult population already provides such an unpaid but invaluable service. However, a central problem with our continued reliance on unpaid care is that, in general, family carers of people with dementia experience greater health inequalities due to the chronic stress commonly associated with long-term caregiving. This threatens carers' health whilst also undermining their ability to continue to provide care. A key question therefore is, ‘who will care for the carers?’ This question was the springboard for the research project I am presently engaged in which seeks to investigate, ‘What works to support family carers of people with dementia?’ While myriad resources exist that might potentially be made available, what is noticeably absent is any agreed ‘gold standard’ of support that might be put into place, tailored according to the different stages of Alzheimer’s. Unlocking this particular dementia challenge will not prevent the ‘time bomb,’ but it can offer families a much needed protective shield if and when that time does come. The need to raise awareness of dementia and the challenges associated with it has never been more urgent - the disease lies on all our doorsteps. 

Mark is currently engaged in a project concerned with several key questions related to Alzheimer’s disease: (i) which factors remain crucial to resilience-building for family carers of people with dementia (PWD) in order to maintain and sustain informal caregiving and which hinder it (ii) how can tailored support best be targeted to address the needs of specific carers? (iii) how can the inherent health inequalities faced by family carers of PWD be reduced? 

UK Dementia Awareness Week 2015 took place 17-23 May. If you wish to find out more about Alzheimer's please visit the Alzheimer's Society website.

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