Population Health Sciences Institute, Newcastle University
“Wherever men and women are condemned to live in extreme poverty, human rights are violated. To come together to ensure that these rights be respected is our solemn duty”
All Together in Dignity (ATD) Fourth World initiated the UN International day for Overcoming Poverty on the 17th October 1987 and five years later the UN officially designated this day as the International Day for the Eradication of Poverty (IDEP). For over three decades people living in poverty across the globe have used this day as a platform to speak out about their lives and come together in solidarity. This year marks the 30th anniversary of the IDEP and provides an opportunity for everyone to recognise our shared responsibility to eradicate poverty and combat all forms of discrimination.
Poverty is not inevitable, it is a result of deliberate decisions or inaction that disempower the poorest and most marginalised people in our societies. Poverty is not hidden, we can see the effects of it in the variations in health outcomes and life expectancy between the most deprived and affluent communities within towns, cities, and across the globe. In England, for example, healthy life expectancy varies by up to 21.5 years for women and 15.8 years for men between the most and least deprived local authority areas. England is not alone. These health inequalities between the rich and the poor exist globally. Wherever there are inequalities in opportunities and income there are people living in poverty who will not live as long as their affluent neighbours.
The COVID-19 pandemic has laid bare these inequalities and highlighted how we are not in this together. Our recent review found extensive evidence of inequalities in COVID-19 mortality rates. At every level of geography – neighbourhood, town, city, region – people living in poverty had higher rates of COVID-19 deaths than their more affluent neighbours across the globe. The pandemic has been an unequal experience with higher mortality rates in the most deprived places and communities (McGowan & Bambra, The Lancet Public Health in press).
My research focuses on examining regional inequalities in health, highlighting the root causes of poverty, and advocating for those with lived experiences of marginalisation to ensure they are included in decision-making processes and developing solutions to eradicating the structural drivers of inequality and poverty. I developed the Equal England Public Network to create a space for members of the public to share lived experiences of poverty and influence research/practice to reduce health and social inequalities. Our public partners co-develop research to tackle the root causes of poverty and have influenced national decision-making on actions to improve health post-pandemic.
Thrive Teesside Event: International Day to End Poverty
To commemorate the International Day to End Poverty I attended an event hosted by Thrive Teesside, an award-winning organisation that aims to implement a legal duty to put the voice and experience of socio-economic disadvantage at the heart of policy making and local decision making. The event showcased good practice in participatory approaches to local decision making and highlight how the value of lived experiences can develop local responses to mitigate the impact of poverty.
The event highlighted how tackling poverty requires collaborative action. It was encouraging to see members of the local council, grass roots community organisations, the local mayor, academics, and members of the public coming together to hear about the lived experience of poverty and engage in discussions about developing solutions to poverty as well as immediate actions people are taking at the local level to ameliorate the effects of the current cost of living crisis.
Thrive Teesside work on a local level providing one-to-one support to those with immediate needs but they also work on a national level to raise voices of those often unheard with APLE (Addressing Poverty with Lived Experience). They work collaboratively as Poverty 2 Solutions with ATD Fourth World and Dole Animators to use their expertise to propose solutions to some of the biggest issues that lock people in poverty across the UK and recently produced a short film to advocate for the need to implement a legal duty to put the voice and experience of socio-economic disadvantage at the heart of policy making. Their Listen Up to Level Up film makes visible the real issues surrounding poverty which aims to create discussions, mobilise and motivate people, it highlights how the insight of lived experiences of poverty is essential to creating fairer policies.
To mark the 30th anniversary of IDEP we should reflect on how we can make our research more participatory, develop connections with our local communities and harness the skills, expertise and insight within them to develop research agendas that focus on the root causes of poverty and co-develop more effective solutions for change.
I worked with PHSI colleagues Dawn Craig, Fiona Beyer and Louise Tanner on EMPoWER funded by NIHR HTA to investigate whether providing powered mobility for very young children provides more benefits than the current practice of waiting until children are 5 years or older. The project was a broad collaboration of academics from Newcastle and Bangor, young people using powered mobility, and an international advisor board. We reviewed a wider range of published evidence from case studies to randomised controlled trials and to qualitative studies, and found that providing powered mobility for young children is likely to have many benefits, to be safe, and to be acceptable to families. The young people co-leading the project with us developed short videos of the findings – we’d love you to view them!
During the Covid-19 pandemic, the NHS faced an unprecedented crisis. In response, vital services for disabled children and young people were delayed, deprioritised, or closed. A national campaign by the Disabled Children’s Partnership has highlighted the challenges families of disabled children have faced because of this. In their most recent report, Then There was Silence, it was highlighted how families felt isolated, abandoned and not listened to.
A new PHSI project, Recovery, Renewal and Reset of Services to Disabled Children, led by Dr Lindsay Pennington, started in September 2021. The project aims to learn from the experiences of children and young people (CYP) and their families during the pandemic, using their voices to inform practical policy solutions for the recovery of services and to plan for future emergencies. A key aspect of this project is the Patient and Public Involvement (PPI) work, to ensure the final recommendations reflect the needs and priorities of CYP and parent-carers.
Involving parent carers and young people has been part of the process from the outset. During the development of the project, the management team had consulted with chairs of local Parent Carer Networks in the National Network of Parent Carer Forums and engaged with an active network of practitioners that spans education, health, and social care through The Council for Disabled Children. The parent carers and support organisations have strongly supported the need for the research and have been involved in the design of the study.
Embedding disabled young people and their families into the research team and work
Hannah Merrick is a PHSI Research Associate who has worked on a range of research projects on experiences of healthcare and informal support for young people with complex health needs and their families.
As one of the research associates on the project, one of the first priorities for me was setting up the parent-carer advisory group and the young people’s advisory group. Lucky for me, the project management group includes experts in carrying out PPI work, who can advise us, offer training, and help recruit parent-carers and young people to the groups. We were able to set up and run our first parent-carer advisory group quickly. The group was run online, meaning we were able to include parent carers from different areas across England. We ran the session in the evening at the convenience of the parent carers. We received some helpful feedback about the interview topics and as a result of the session an interview distress protocol was put in place to allow the researchers to respond appropriately to the emotions and distress that may be expressed by parent carers.
Setting up the young people’s advisory group has been more challenging. Recruiting from schools when they have been busy settling children back into school has been difficult. While working online was successful for the parent carer group and has been helpful for young people’s participation in other areas, working online still comes with access challenges for some disabled children and young people. We have been able to organise one group and had a great first meeting with four young people, visiting them at their school. Preparation was key! Lots of planning was done to make sure the young people could participate in the group. We met with the school staff who were helping to facilitate the group and they ran a preparation session with the young people prior to the meeting. This all led to an informative, engaging, and fun meeting. The young people really helped us in making our information sheets clear and accessible and had some great practical and innovative suggestions on how we can make online interviewing easier for young people and different ways young people could participate in the research if an interview is not possible.
Throughout the project we plan to keep building up membership to the parent-carer and young people advisory groups and regularly meet with them at key stages. The advisory groups have decided how they will communicate across the project (e.g., through a Facebook group, by email). We are also using the guidelines by NIHR INVOLVE, ensuring all members are appropriately compensated for their involvement.
Lessons learntso far from this experience of including disabled children and young people in research
Plan, plan, plan: seek advice and help from others with experience and allow young people to prepare for the session.
Be open to being challenged about what will and won’t work: be open to hearing new ideas and being questioned about your chosen approach. And open to making the necessary changes!
Seek feedback from participants: did the group work well for the young people? What would help next time?
What next?
Interviews with parent carers and children and young people will be beginning in the new year. We will be meeting with our advisory groups again to discuss the findings and our interpretations of the results. Our advisory groups will also be an integral part of helping design our national Delphi survey, which will go out to parent carers, young people and professionals to find out their views on draft recommendations and agree key-guidance for policy makers.
More details about the research team and the stages of the research project can be found here.
Mental Health: a Hidden Disability
One of the themes for Disability History Month 2021 is ‘hidden disabilities’. Under the Equality Act 2020, a disability is defined as when a person has a physical or mental impairment that has a substantial, adverse, and long-term effect on their ability to carry out normal day-to-day activities. A mental health condition is considered a disability if it has a long-term effect on a person’s normal day-to-day activities. There are many different types of mental health condition which can lead to a disability, including dementia, depression, bipolar disorder, obsessive compulsive disorder, and schizophrenia.
Liam Spencer, Research Assistant and Dr Ruth McGovern, Lecturer in Public Health share some highlights of their research relating to mental health
Much of our joint work focuses upon mental health, substance use, and early and preventative interventions, particularly in relation to children and families. So, for Disability History Month, we wanted to share with you some of our current and relevant research projects.
Our National Institute for Health Research (NIHR) Public Health Practice Evaluation Scheme (PHPES) funded project, is an evaluation of the Best Start in Life Alliance in South Tyneside. Children and families in South Tyneside have high levels of need, with some children and families being particularly disadvantaged. The practice members of our team worked with local people to develop a new ‘Alliancing’ approach to helping children and families. This approach: brings together the different professionals that support children and families into one team; identifies key people in schools and other settings to help children who may have mental health difficulties; and includes trained young people who want to volunteer to help their peers to live healthier lives. We want to know if this new approach makes a difference for children and families. To find this out, we are working closely with children and families who live in South Tyneside and the people who provide services, undertaking qualitative and quantitative data collection.
Substance abuse may sharply increase symptoms of mental illness or even trigger new symptoms. The mixed-methods European ‘ATTUNE’ study aimed to address a gap in knowledge on what shapes ATS use across the life-course; how to prevent and treat harmful ATS use and what influences different trajectories of consumption through individuals’ lives. A recent publication from this study, reports on a sub-sample of ATTUNE qualitative data collected from participants in the North East of England, and aimed to specifically explore individual experiences of, and perspectives on the relationship between mental health and ATS consumption. The findings help to develop understanding around the complex and bi-directional relationship between ATS use and mental health. Many ATS users lead chaotic lives and engage in multiple risk behaviours, however there is a need to better understand and conceptualise the dynamic interaction between different individual, social, environment and cultural factors that determine individuals’ mental health and substance use. There is no ‘one size fits all’ approach to prevention and treatment, and the findings from this paper highlight the need for more joined-up, tailored and holistic approaches to intervention development.
A project led by SPHR colleagues at LiLac (Liverpool and Lancaster Universities) is aiming to understand the impact of anti-homophobic, bi-phobic and trans-phobic (HBT) bullying programmes on LGBTQ+ young people’s mental health in England. In 2020, the Government Equalities Office withdrew funding of £4million for school programmes aimed at tackling HBT-bullying. This decision is likely to lead to negative consequences for LGBTQ+ young people. Young people who identify as LGBTQ+ are more likely to face bullying and social rejection in education settings such as schools. As a result, they are likely to develop poor mental health compared to heterosexual peers. COVID-19 may cause additional concerns for LGBTQ+ young people as they may not be ‘out’ to their families or live with individuals who are unsupportive of LGBTQ+ identities. A small body of international research has shown a direct link between LGBTQ+ anti-bullying projects and improvements in the mental health of young people who identify as LGBTQ+, however, this has not been explored in the UK. The Creating LGBT+ Affirming School Environments (CLASS) research project is working closely with schools, young people, and third sector organisations to identify programmes with the potential to improve LGBTQ+ young people’s mental health.
What is paternal perinatal mental health? Is it common for fathers to experience psychological distress in the perinatal period? Do fathers have access to support for perinatal mental health?
Many reading this blog will be aware that pregnancy and birth can lead to mental health conditions for mums but are you aware that dads can also be affected? Paternal perinatal mental health refers to the occurrence of mental health conditions, such as depression and anxiety, as a consequence of experiences during pregnancy and birth. Lack of information and support, stigma, exclusion, difficulties in diagnosis, and a lack of focus on relational and emotional change, can all lead to less awareness of the mental health struggles that men can face during this time. On International Men’s Day, we wanted to draw attention to men’s mental health within the perinatal period and how the transition to fatherhood can impact on mental health and wellbeing for some.
The arrival of a new baby brings excitement and joy, but also apprehension, fear, and high expectations of oneself. Existing research suggests that there is a gap between fathers’ expectations of how they believe they should be responding in fatherhood and the reality of how they do respond. When these role expectations have not been met, fathers can be very critical of themselves. This can lead to frustration, anxiety and psychological distress at a time which should be enjoyable and exciting.
Existing studies involving talking to fathers about their experiences within the perinatal period have helped to understand the emotions and distress fathers can encounter. Fathers can feel underprepared, sad or depressed, and isolated from maternity services and decision making. They may experience sleep disturbances and increased alcohol intake, and some experience thoughts of self-harm. Some fathers also find it culturally and socially unacceptable to speak about their difficulties due to not wanting to be seen as weak or vulnerable. Masculine ideals, stigma and inequality within the first stages of parenthood have prevented fathers from reaching out for support. The needs of men are often overlooked as most support for new parents, such as childrens centres and baby groups, focusses on women.
Fathers have reported negative experiences when it comes to accessing current support, if indeed there is any support to access. Their overall wellbeing is not taken into account during this time and they are often directed to seek support from organisations outside of healthcare. This highlights the urgent requirement for paternal perinatal mental health support tailored to father’s needs
It is vitally important that we increase awareness from friends, family and health professionals of father’s mental health in the perinatal period. We need to understand what the barriers and facilitators are to seeking support, and what that support should look like. Research that will be undertaken as part of a PhD, funded by the National Institute for Health Research (NIHR)Applied Research Collaboration (ARC) North East and North Cumbria (NENC), will work with dads of different ages, backgrounds, cultures and family arrangements to reflect the diversity in parenting experience, to gain their insights. It will also work with professionals.
By undertaking this research, we hope to empower fathers to seek support and to co-design support that is tailored to their needs. We are just starting this journey but do get in contact if you would like to know about our plans or to participate in the research.
It is important that we shine a light on this every day but especially on International Men’s Day. We want to make a positive difference to the wellbeing and lives of fathers. By raising awareness of paternal perinatal mental health, we can promote a positive conversation about men and mental health. We want to drive action so that pregnancy and birth is a positive experience for all.
Meet Patience Kunonga – Research Assistant and PhD Student (Evidence Synthesis)
After completing a Master’s program in Public Health at Newcastle University in 2016, I was inspired to join the Evidence Synthesis Group (ESG) in the Population Health Sciences Institute in March 2017. I have gained significant knowledge, experience and skills in evidence synthesis methodologies, and have become one of the core team delivering outputs for the National Institute for Health Research (NIHR) Older People and Frailty Policy Research Unit (PRU).
Prior to my PRU role, I also supported the delivery of the NIHR Innovation Observatory. My research interests include social care, public health and evidence synthesis and I am currently working towards a PhD to develop a bespoke framework for the incorporation of assessments of health inequalities and/or inequities within evidence synthesis. Since joining ESG, I have co-authored peer-reviewed articles in top medical journals such as the British Medical Journal, Journal of the American Medical Directors Association, Journal of Medical Internet Research and Cochrane Database of Systematic Reviews.
Patience Kunonga, Population Health Sciences Institute Research Assistant and PhD Student
COVID-19 – Palliative and End of life care experiences of people of African and Caribbean dEscent (PEACE) Project
As you may gather, previously, my skills mainly involved gathering empirical evidence from a range of sources to inform decision makers or policy changes to promote healthy ageing. However, I am currently working on a project that has taken me out of my comfort zone in terms of research methodology, but I am very excited to be part of it. The project is a qualitative piece of work, seeking to explore the end-of-life-care experiences of people of African and Caribbean descent during the COVID-19 pandemic. It is a collaboration between Newcastle University and University of Manchester, is funded by the NIHR Policy Research Programme led by Dr Felicity Dewhurst, an NIHR Academic Clinical Lecturer in the Population Health Sciences Institute and an Honorary Consultant at St Oswald’s Hospice in Newcastle. For the project, I am the Patient and Public Involvement (PPI) lead, which means I have to engage with the public to ensure their experiences and views are heard. As we celebrate Black History Month, an annual event to honour the history and celebrate the achievements of Black people in the UK, it is fitting that I reflect on how research plays an important role in trying to understand and tackle existing health inequalities, with a focus on how this affects people of African and Caribbean descent.
What is end-of-life care?
End-of-Life-Care (EOLC) refers to the treatment, care and support for people who are nearing the end of their life. It helps people live as comfortably as possible, thereby improving their health-related quality of life in the time they have left. Despite these benefits, it is surprising that one in four UK families miss out on such crucial support, particularly those from African or Caribbean descent. Research into EOLC for this particular group is scarce, probably because they represent only 3.3% of the UK population. However a recent article on the disparities of access to EOLC services among Black, Asian and Minority Ethnic (BAME) groups, suggest that ethnic minorities, as a whole, are less likely to engage in end-of-life care planning activities. I find this quite disheartening as this means that we do not know why engagement is low, despite national research calls for such information. A recent study shows that Black people are 4 times more likely to die of COVID-19 than white people, making it imperative that we understand and redress these disparities. As a Zimbabwean based in the UK, my roots play an important role in some of the decisions I make and I am interested to know whether some of the reasons why Black people do not engage with EOLC services are comparable across cultures.
So, what are we doing?
We have been actively recruiting participants through emails, posters, flyers, social media and a radio appearance. However, the uptake of recruitments is low, and I am going to take this opportunity to make an appeal for your help with recruitment. We are in desperate need and would really appreciate your help to share this opportunity with your wider network.
We are seeking bereaved relatives, health and social care professionals and community workers to take part in the study. We feel that professional carers, regardless of their ethnicity, could offer a different perspective on the subject since they offer a broad range of services and can be diverse in their provision, e.g. who they support and how.
If you are over 18 and you cared or provided support for someone of African and Caribbean descent who died (of any cause) during the pandemic, we want to hear from you. We want to know your views on how EOLC can be improved, particularly how barriers to good care and the inequity of care provision can be reduced.
How to get involved
If you are interested in taking part and would like more information, please email PEACE@newcastle.ac.uk, call 07708 649459 or follow the link below: https://www.opfpru.nihr.ac.uk/get-involved/#PEACE
In summary, my experience with the PEACE project so far has made me realise that Black people are less willing or reluctant to take part in health research. So, as we celebrate Black History Month and honour the historical contributions made by people of African and Caribbean descent, as academic researchers, we need to reflect on effective ways we can engage and attract people of African and Caribbean descent to take part in health research.
