What is CPAR?
Community Participatory Action Research (CPAR) is an approach to research that gives people a voice in identifying and solving the health problems affecting their communities.
The aim of CPAR is to increase knowledge and understanding of a given phenomenon and to integrate the knowledge gained with interventions for policies or social change benefiting the community members.
In the CPAR research all stakeholders are equal partners, working together to make positive change within communities and address health inequalities.
How CPAR started
In February 2021, Health Education England Southeast (HEE SE), the Office for Health Improvement and Disparities (OHID) and NHS England set up the Southeast England Community Participatory Action Research Project to build research capacity and capability within certain previously excluded or not fully engaged communities.
The Public Health England’s report, Covid-19: understanding the impact on BAME communities, demonstrates the widening of existing health inequalities and as a result, Health Education England Southeast implemented a programme of work to support community participatory research, in which researchers and community stakeholders engage as equal partners.
The aims of the project were to:
- support skills development of individuals from organisations drawn from Black, Asian, and Minority Ethnic communities in CPAR to tackle health issues related to COVID-19.
- to investigate the impact of Covid-19 on Black, Asian and Minority Ethnic (BAME) communities and develop relevant and implementable services that will promote the health and wellbeing of all.
- equip community researchers with the skills to later deliver CPAR to help in addressing wider inequalities.
- share learning from CPAR across networks in the Southeast and beyond.
The project was also seen as an opportunity to develop research capacity and capability, and to fill gaps and strengthen knowledge for certain previously excluded or not fully engaged communities.
In Reading, Berkshire, CPAR was a partnership project focussing on health inequalities. The partners are Reading Borough Council (RBC), Reading voluntary action ( RVA), Reading Community Learning Centre (RCLC), University of Reading (UOR), and Alliance for Cohesion and Racial Equality (ACRE).
This team of community researchers carried out their research in 2021- 2022 In the picture seated from the left, Tariq, and Eva. Standing from the left are Hema, Donna, Krishna, and Esther who was the CPAR facilitator.
Key areas of research included:
- Women and health care services By Donna and Hema
- Maternal service and digital inclusion by Eva
- Men and mental health by Tariq
- Impact of covid on the Nepalese community by Krishna
The researchers took part in 3 different showcase events to present their research work, findings, and recommendations.
The first, Community Participatory Action Research (CPAR) showcase event was on Monday the 4th of April 2022 from 9:30 am to 1 pm at the Museum of English Rural life and was hosted by the University of Reading.
Maternal services and digital inclusion which were presented by Eva Karanja showed an overload of leaflets for mothers which means they get too much information and makes them panic. Mothers are not getting listened to which is very hard because a lot of them go through the same thing and staff at the NHS cannot offer support because of overcrowding and mounting pressure on them.
There is a lack of time for mothers, because they should have at least a day to themselves. Classes are not even offered as much to mothers so they cannot go to class and meet new mothers or mothers-to-be.
During covid-19 partners were not allowed in birth labour and the child group was closed leaving some mothers feeling lonely and isolated being away from partners during birth. C- section was for 24 hours only and there were 3 days when someone could not see her child for three days because of her C- section. It is remarked that more needs to be done in this regard.
Women and Health care services were presented by Hema Sundararajan and Donna Ma. This section revealed that there is the need for more health service awareness and more support for people who have language and service barriers.
There needs to be staff who can translate for other people such as Arabic, Punjabi, Hindi, and other languages. Booking appointments was hard for people because 61% of them suffer from anxiety and 21% of physical health while 53% had challenges reaching out to healthcare and 26% had been discouraged from seeking support.
In summary of the research reflections, it is realised through the experience respondents that there is a need for more medical care.
Men’s and Mental health, which was presented by Tariq Gomma revealed that during Covid, 19 people were so depressed that they had to stay home for a year. Some people did not even have access to the internet, mobile phones, and/or computer making it very hard to network or communicate. Men do not show their emotions and they find it hard to express out their feelings.
The study also discovered the most men hardly cry from their emotions and pretend to be happy about a lot of things or even discuss their situations. This discovery is found to be very important because men’s mental health can lead to suicide, smoking aggression, drugs, and alcohol as a result of keeping to themselves.
Some people have to wait up to 6 months for an appointment as a result of inadequate health services and the only hospital that mainly deals with mental health is the Prospect Hospital. The long wait compounded with mental ill health, sparks the risks to habitual abuse and suicide hence the need for more clinic.
All of the mental health services are online and it is hard for people to communicate and is unwanted as a community and men trying to hide it because in most cases, they do not trust anyone. People need help especially children because they are getting bullied at school.
More help needs to be done as a community and people need to communicate to each other even if it is with a friend because it can sometimes help especially when they are away from family members.
A case has risen in men’s mental health especially when it is due to suicide. We need to work together as a community and seek help for the people who need it the most. Even though is a negative role on media but celebrities and influencers help people to raise awareness for men and are encouraging people to talk and speak to someone or even to them. There needs to be more help for mental health because everyone deserves to be happy and to be supported by NHS, psychiatrist, and therapy.
Impact of covid-19 on the Nepalese community Krishna Neupane
On an online zoom interview, it was said that this community struggled due to language barrier since most of them are not fluent in the English language and as a result could not access services.
The interview also indicated that about eight thousand Nepalese living in the Reading area struggled to see each other during the pandemic thereby affecting their mental health because they could hardly communicate with others. This is a mixed group comprises couples, individuals, children, and grandparents were struggling to see each other.
Students and refugees were struggling to communicate with teachers and other people because of their language barrier, especially during the pandemic. The research reveals that they found it very hard to communicate with the teaching staff, other members of the community and NHS staff.
The Nepalese community indicated among other difficult living conditions included the lack of internet because were not able to communicate with loved ones within their diaspora community as well as with their families in Nepal. Some families were separated from each other because of the living conditions while others were getting moved by the government into houses or hotels.
Children had been struggling on the online schooling because of the language barrier. It made it very difficult for them to communicate with their classmates and teachers despite getting extra support from other teachers. The language barrier made it hard for them to connect with GP and other medical services because would always need someone to translate for them and/or provide extra support with forms and letters.
A guest speaker who is called Professor Adrian Bell, Research Dean for Prosperity and Resilience at the University of Reading who expressed his love for research said researching a particular phenomenon and finding relevant information is paramount.
Prof. Bell said his research is mainly on medieval history, economic history, and football. He said the reason why he loves football is because it engages people, and the University of Reading is very engaging as well.
Prof. Bell said he recently saw something to do with NHS staff and new-born mums. He gave an example saying his niece recently had a baby and she needed a pillow and asked one of the staff members for one.
But to his surprise, the NHS staff’s response to his niece was, “who do you think you are, this is NHS?” which was demeaning and disrespectful. This why as a community we need to do more and speak out by talking about people’s experiences. He said we all should be treated equally as a community.
Member of the public had asked question saying all of the questions is going to be put in a report what’s going to happen with this report?
After presenting all of the findings of the research, researchers said they are all committed to the findings of report and the researcher’s voices will be heard and it will have an influence. There are also a lot of volunteers from the community who worked with them and need their voices to be heard as well.
Reading borough council is interested in this report and wants to help people’s well-being and support the community. Reading University everything it can to get the research and other people from the Reading community are looking forward to seeing the report and that hopefully, it gets a nationally audience.
Researchers are willing to use their voices and raise awareness using their platforms to get those voices heard and there are many different sectors and volunteers that are willing to help in this initiative. In addition, a lot of the Reading community want to know what is happening and how powerful this showcase action research event needs to be heard by other people.
As a collective group in the Southeast, the researchers said their presentations need to be heard and get the empowerment to succeed and that the government needs to hear the community’s voices they investigated. This is important to the Reading community and to the researchers because they want to help and support people who need it the most.
One of them said they are going to show the report to the rest of the Reading community because, “we couldn’t have the many people in the event due to covid – 19 that is why more of our voices will be heard. This has to link to our community because we need the trust, empowerment, and success to move forwards.”
Another question is what happens within the service and how can more be done? The service needs more help and need more clinics within the area especially in the mental health sector and maternal services.
Raveena, Kesia and Annie were the youngest members in the project and have been working with Eva, Victor, and Tariq in ACRE and Mojatu. They were asked by Esther what their thoughts were regarding the CPAR research, and their response was that the research was very powerful, engaging and empowered them.
They find it thoughtful because they are transiting to be the next generation and that it will make their voices to be heard further than ever. They said that they will use their voices anytime they get the chance and encourage their generation to take the chances that come their way in the near future.