“It’s not something that you just openly discuss” - Supporting British South Asian carers affected by drug and alcohol use

Posted by Jayne Black, Public Health Officer, Harm Reduction and Social Inclusion, Public Health Directorate, Newcastle City Council

Access to services, such as those related to drugs and alcohol and other health services, can be challenging. This challenge may be harder for some minority communities due to a variety of additional factors which impact people from accessing support when required. It is important that we identify these issues and barriers that prevent people in need from accessing help.

PROPS Community Connector, Fatema Rahman (C) with colleagues Annette
  Walby (L) and Helen Thompson (R), celebrating Eid at Fenham Library

In Newcastle, an ethnic minority needs assessment has been carried out and is available on our Joint Strategic Needs Assessment webpage.

We have also partnered with Northumbria University to explore barriers and perceptions to accessing drug and alcohol support.

An important area of focus is how family members are affected by a loved one’s substance use. In Newcastle, a recent research project backed by Fuse seedcorn funding investigated the perspective of British South Asian carers, who care for people who use drugs and/or alcohol, regarding their experiences and access to specialist drug and alcohol carer services in Newcastle.

The collaboration which included, co-production with people with lived experience, was between Newcastle City Council, PROPS (Specialist Family Drugs and Alcohol Service), Northumbria and Newcastle Universities.

What do we know are some of the barriers?

Attitudinal (personal)

The limited research suggests that attitudinal barriers within minority groups exist in relation to accessing care services. These are suggested to be in relation to not wanting to involve services. This is due to low awareness of services and availability, and concerns around cultural or religious appropriateness.

Stigma

Stigma is harmful and has been defined as the devaluing of an individual based on their characteristics or behaviour.

We know that stigma in general can have an impact on whether an individual seeks support for alcohol or drug issues, or other health issues.

Within the British South Asian and Muslim community, it has been identified that societal stigma, within the community, can impact upon people’s willingness to access help. This stigma may be centred around concerns of what other members of the community perceive about a particular individual or family and their use of alcohol or drugs.

Carers

The research evidence within this area rarely extends to those who are in a caring role for family or friends who are struggling with issues around alcohol or drugs. This could be an important area of focus, as support from a family member or friend is incredibly important. Whether day-to-day or during recovery, supporting carers is vital. However, it is worth noting that some people may not identify or recognise themselves as a carer and therefore, are unaware of support.

The Census of England and Wales in 2021 identified that North East England has the highest number of people providing unpaid care. It also suggests that unpaid carers in the North East provide the most hours of care.

Providing care may impact the health and wellbeing of a carer, this could include financial as well as if someone is a kinship carer. Therefore, it is important to identify if there are barriers to accessing carer support services for people who care for family members or friends using drugs and or alcohol.

What did we discover?

Our research results identified a variety of key areas. These areas related to the topic of drugs and alcohol in terms of it being ‘taboo’, with associated stigma, the barriers that are experienced for accessing family support, along with the general awareness of family support services.

Drug and alcohol use as a taboo topic

Carers highlighted the difficulty of discussing their loved one’s use of drugs and alcohol with other people who are close to them. The topic itself can be seen as something which creates unease. This creates a possible negative effect as talking with others may help create a supportive network and help carers feel supported and provided with guidance.

“the drug use; it’s not something that you just openly discuss. It’s like [frowned] upon. You know, people, I think, blame the parents, “well why aren’t you doing something?” […] Unless somebody can help you, you know, guide you, there’s no point having these discussions with people […] I mean, I’ve spoke to their grandma about it and stuff. Like, people who genuinely care.” 

                                                                             Participant

In contrast, others mentioned conversations about drugs and alcohol being more prevalent in the community, requiring more awareness for community members.

Barriers to accessing family support

The issue of stigma is evident from the discussion, with drug and or alcohol use being seen as an individual issue of choice, which not only impacts the individual, but affects the reputation of the family. It is seen as different to mental health issues, as something that people are unable to physically observe or have an understanding of.

“I don’t even talk about his mental health condition, ‘cos it’s a stigma. People like, laugh at it and things and say, ‘look, he’s barking; he’s crazy’. It’s this whole attitude that he’s crazy. You know, there’s no sympathy. […] it’s better and easier to get cancer than it is to [have anything] like that, because no one’s going to be understanding. […] People don’t understand, they think they’re putting it on half the time. They’re not understanding the side effects that it has.” 

                                                                            Participant 

There is recognition that seeing or being aware of someone in a community accessing help for drugs and alcohol, or in recovery, can help shift perceptions and show that support is accessible to other members of the community.

Misconceptions around confidentiality and issues of trust can be seen within those working with services or accessing a service. Carers need to be reassured that services are bound by confidentiality. In terms of confidentiality within the community, raising awareness about available support can play a major role in reducing stigma associated with engagement and seeking support.

There is hope in the organisations that provide family support services, and allowing a carer to progress on their support journey at their own pace is important.

“I got involved with them and *the family support service* were really good, because at that time, I didn’t want anyone to know, ‘cos I didn’t know what was happening and they offered me so many different solutions and like, I don’t have to see them straight away […] Cos some people don’t want to talk about… You know what I mean? So at that time, I didn’t want to see who I am in this. I just wanted to understand what’s happening.” 

                                                                             Participant

Awareness of family support services

It was identified that there is limited knowledge of services that provide support for drug and alcohol recovery. This may create difficulty, as the role of the carer can be a ‘navigator’. Therefore, limited knowledge may add an additional pressure to the carer, which was an issue raised during the interviews.

Services reaching into communities, rather than people who require support finding their own their way, is highlighted as being a positive - which can be used to make recommendations for a future response.

Using an approach which makes the most of existing support already within communities and working at a pace that suits the carer. Also, harnessing the power and visible importance of communities can create a support network, ensuring assistance is sustainable and effective.

“Over the phone, it was fine. Then eventually, they came to my house. Eventually met in cafes, then started a course with them.”

“[They] are very good with giving me a variety of choices that suited me when I needed, so whatever suits you, with patients and carers, however it suits them. However it suits every individual is different, so they met my needs.”     

                                                                             Participant

Recommendations

We must connect with those who have relationships with members of a community to enhance trust and help support people who need it. Recommendations from the research included outreach into the community for connections with leaders. This must include vital considerations around caring and family support.

Encouraging visibility of services and people in recovery or who have lived experience within the community is also important to help not only the carers, but those who are struggling with the use of alcohol and drugs.

Developing work in Newcastle

Work in Newcastle is being developed within this area. Public Health have been engaging with British South Asian community leaders to enhance treatment and recovery efforts including carers. Two key meetings were held with stakeholders such as the Bangladeshi Association, local Imams, and university researchers. These meetings facilitated open dialogue on barriers to treatment, cultural sensitivities, and support systems, building trust and shared goals.

Engagement with the Health and Race Equality Forum (HAREF) emphasised the initiative's importance, with leaders showing enthusiasm for ongoing collaboration. A rough plan is being developed from these discussions, with next steps involving continued dialogue and refining the action plan to meet community needs. This approach highlights the value of community-led, culturally informed initiatives in promoting health equity.

Newcastle is also working with PROPS to fund a part time South Asian Muslim worker who will serve as a community connector to bridge the gap between community and support services. This is building on their existing effective practice in this space. The community connector worker will provide tailored support to facilitate access to support, ensuring carers, and families get the help they need in a culturally sensitive manner.

Personal reflection

The research highlights the importance of the voice from carers and communities, and those with lived experience. The importance of understanding the issues from those with lived experience who are supporting someone and working through any daily challenges. We must ensure that valuable information that we discover from research, such as this, is used to act and ensure that everyone has an opportunity to be supported and live well.

From crisis to collaboration: Transforming support for people experiencing homelessness in North East England

Posted by Steven Thirkle, Research Associate, Newcastle University

People experiencing homelessness often have multiple and complex health and social care needs that require support from many services. However, accessing and coordinating this support can be difficult when services are disconnected geographically or relationally. Often the person who is experiencing these challenges is the one who has to reach out for help, and this can be extremely hard for someone also managing day-to-day homelessness.

During our workshop, More Than Minutes visually captured our discussions, providing a dynamic summary. These visuals encapsulate key insights and recommendations, offering an engaging snapshot of our collective journey towards transforming support for people experiencing homelessness.

Over the past two years, our team has been working with services that provide support to people experiencing homelessness in rural and coastal areas of North East England. Our goal has been to explore innovative ways to improve access to care and support for these vulnerable people. Here, we share our research findings, shed light on the challenges faced by people experiencing homelessness and present our co-produced recommendations for creating a more effective and holistic (whole person) support system.

What does hospital data tell us?

To understand why people experiencing homelessness in the North East often turn to emergency care services in rural and coastal areas rather than seeking alternative forms of support, we examined hospital data on people attending emergency care services who had no recorded address. We discovered that there are many contributing factors, including struggles with alcohol and drugs, mental health issues, and challenging social situations. These challenges often occur at the same time, exacerbating their complexity and approaches to treatment.

What is stopping homeless people accessing services?

While this numerical data provided valuable insights, it did not uncover the underlying reasons behind the lack of engagement with other support services. To gain deeper insights, we interviewed people experiencing homelessness as well as those providing support in rural and coastal areas. The interviews aimed to explore experiences with emergency care services, overall health, social lives, and past traumas. They revealed significant barriers to accessing services, such as limited resources, transportation challenges inherent to rural areas, and the isolation often felt in coastal communities. Additionally, rigid service criteria and thresholds prevented people from receiving the support they urgently needed, further compounded by the sparse availability of services in these regions.

What is the current picture?

A comprehensive and integrated approach tailored to the rural and coastal context was needed to provide effective support to people experiencing homelessness in these areas, so we mapped out existing services and their collaborative relationships in the areas. Our findings showed a fragmented system, with many services operating independently and lacking essential connections to the core network of services necessary for addressing the unique challenges faced by people in rural and coastal areas.

How do we address the gaps?

In response to these gaps, we organised a workshop at the Community Hub in Cramlington, Northumberland, bringing together over 70 people including professionals from health, housing, social services, local authorities, law enforcement, emergency response, and third-sector organisations, as well as people with lived experience of homelessness and mental health issues in these regions. Together we developed recommendations for a more effective and collaborative approach to supporting people experiencing homelessness in rural and coastal areas. Seven key areas for recommendations were identified:

1. Long-term funding and resources: Campaign for sustained funding and increased resources to support comprehensive and ongoing assistance for homeless people.
2. Coordination, connectivity, and communication: Establish robust ways to coordinate, foster better connectivity between services, and improve communication channels to ensure a seamless and integrated support system.
3. Accessible services - pathways to support: Develop clear and accessible pathways for homeless people to access a wide range of support services, including health, housing, social services, and mental health resources.
4. Building trust and co-developing services with lived experience: Foster trust and inclusivity by actively involving peoples with lived experience of homelessness in the design, development, and evaluation of support services.
5. Trauma-informed practice: Implement trauma-informed approaches across all support services, recognising and addressing the underlying trauma experienced by homeless people.
6. Improved data sharing: Establish efficient data-sharing agreements for support services to ensure comprehensive and up-to-date information, enabling better coordination and informed decision-making.
7. Staff retention and wellbeing: Prioritise the wellbeing of support staff by providing resources, training, and support to prevent burnout and turnover, fostering continuity of care.

We have developed a handy two-page Fuse research brief which pulls out the key findings and recommendations for practice and policy co-developed with people with lived experience. 

Follow this link to read the brief

Cookies, coffee and co-production during Covid

Posted by Emma Adams, Fuse/NIHR School for Public Health Research (SPHR) Pre-doctoral Fellow at Newcastle University, in collaboration with Experts by Experience from Fulfilling Lives Newcastle Gateshead and #HealthNow Newcastle

Photo taken by Jeff Parker (one of the individuals with lived experience involved in our
co-production) of the masks he made for each of us at our first face-to-face meeting. 

COVID-19, has forced all researchers to re-think engagement and how we work with people with lived experience. I like many, have been navigating how best to do this within my study that aims to explore and understand access to community-based mental health and substance use support in Newcastle and Gateshead for those experiencing homelessness during the pandemic.

Since March 2020 I have been collaborating with five people with personal experience of homelessness, mental health, and/or substance use to co-produce the analysis for this study. During that time we have discovered a very helpful approach (albeit with an imposing name) - Interpretative Phenomenological Analysis.

Here comes the science…

This approach was very reflective and recognised that we were trying to understand how our participants made sense of what had happened to them. We wrote exploratory comments to reflect on the word-for-word text from interviews and then used both to develop themes. This approach lent itself really well to our analysis, as we found it was less rigid than other coding-based approaches (such as thematic analysis) and had more opportunity for reflection. 

The saying ‘no two things are alike’ describes how we ran our co-production meetings given COVID-19 restrictions. We sent out printed packages with anonymised transcripts for comments, held Zoom meetings to discuss our comments and thoughts, hosted in-person meetings with sticky notes and marker pens to develop themes and unpick key ideas, and used physical and virtual highlighters to identify our top quotes. Accompanied with a healthy amount of coffee, baked treats, and fruit, we set our sights on trying to understand our data. We broke down each analysis into three sessions, with the first session focussed on reviewing the transcripts and writing comments, the second focussed on developing some initial themes, and the third focussed on identifying and refining all the themes and key quotes.

Friendship, findings and reflections

We are now starting to share initial findings and determine creative ways to present the information. Having built a strong friendship, we reflected on how much we enjoyed the collaborative co-production experience, despite the circumstances created by COVID. We also reflected that not all co-production is positive. Here we share a few thoughts from the experience.

Why did you become involved in the study?
Everyone in our group felt motivated by the opportunity to have their voices heard and make a difference.

"Because I am interested in how the pandemic has affected people and am a member of the Experts by Experience and would like to change things for the better" – Joanne

"I wanted to do a different sort of user health research having done some last year in Newcastle for Crisis and Groundswell. Getting involved in analysing the anonymised data was a fantastic opportunity for myself" – Tony

What did you enjoy and learn?
Everyone enjoyed being involved as the research continued to grow and their continuous involvement meant we could develop friendships.

"Actually being involved from start to finish, Emma baking" – Jeff

"Analysing some of the data and the group! I feel new friendships have been made" – Fiona

 Although different learnings were shared, it was clear that everyone enjoyed working in a team to try out new things and have a ‘behind the scenes’ peak into doing research.

"One day I would really like to do more of this work in a permanent position as part of my continuing personal development. So it was very nice to get the opportunity to find out what this sort of work entailed and whether or not I would enjoy doing it too" – Tony

"Co-production can really work if it's formulated with an organic and lived experience perspective at the heart of the study, the information gathered was not lost in translation and the language from participants' interview was not tampered with" – Des

What did you find challenging and wish researchers knew?
Forcing ourselves to think about some of the things we all found challenging, we realised it is important to touch base with people involved in co-production to understand what they are struggling with and how they can be better supported.

"Biggest problem I have is getting to a venue, I have anxiety issues travelling by bus" – Jeff

"Emma would send me a gentle reminder a few days before work was due and it would spur me to either start, or finish off and get the work sent in. This really helped me" – Fiona

What would you say to a friend about getting involved in research?
Across the board, everyone said they want to continue to be involved in research projects and would encourage friends to do so.

"At first it might fly over the top of your head, but give it time and you will learn things you never knew you were capable of" – Joanne

"Go for it, maybe you can help affect change that will help others who have been through what you have. Plus, you’ll make some new friends and may enjoy yourself too" – Jeff

What are you most excited about?
When asked about what they were most looking forward to and anything else they wanted to share, responses ranged from gaining specific experience, to celebrating successes.

"It made a nice change to be more involved and now I’m doing more research with Crisis its helped me to help them shape how it can be done and how sense making is carried out" – Jeff

"The biggest rush of the project was to receive an email from the Lancet after we submitted a piece on the work. If it gets published, I’m throwing a party" – Fiona

"Emma has kept us updated throughout and involvement moving forward looks bright … and on the back of this there is confidence to come back to the university and vice versa in other research projects" – Des

Lessons learned from a researcher perspective

The depth and richness gained through co-producing my analysis is something I could have never done on my own. I learned that it is okay to admit when you are feeling a bit lost about the best approach, as that allows for an open dialogue to determine what can be done to make things better. Through our co-production, I realised how to make findings more accessible and engaging for everyone. The pandemic has meant that we have all missed out on in-person contact. Listening to our group I was shocked and humbled by how much the little touches mattered; well-timed cookies or an invite for a coffee chat can make a big difference. These small touches allowed me to develop relationships with everyone and have frank and honest conversations. From this experience, I have learned that you do not need to wait until you have findings to make a difference, rather you have a chance through co-production to make lasting impacts across the span of your research project.

Emma's study 'Exploring and understanding access to community-based mental health and addiction services in Newcastle and Gateshead' is NIHR School for Public Health Research (SPHR) ResNet funded.

This project is funded by/ supported by the National Institute for Health Research (NIHR) School for Public Health Research (Grant Reference Number PD-SPH-2015-10025). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.