“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.

"We need happy memories"

How people who have experienced homelessness are redesigning support

Professor Monique Lhussier & Dr Christina Cooper from Northumbria University, and an Experts by Experience panel

Fuse researchers at Northumbria University were recently awarded £1.4m for a project looking to understand connections between trauma, health and homelessness in the North East. Here the research leads share how they have previously worked to embed community voices to improve health and reduce disparities for people with experience of homelessness.

The link between trauma and homelessness has been well documented, with recent evidence showing that 94% of people experiencing homelessness have experienced trauma. In the majority of cases the trauma was complex and reoccurring, with 65% having experienced four or more traumatic experiences.



In 2023 we received funding from the Arts and Humanities Research Council to develop a network to better support people who had experienced homelessness. We were fortunate to work with eight Experts by Experience (EbEs), or Experts by ‘Disaster’ as Barnie (one of our EbEs) suggested; people who had experienced homelessness, and the complex multiple needs and exclusions that frequently co-occur. The nine months project aimed to develop integrated ways of working, embedding community voices into the system to improve health and reduce disparities for People with Experience of Homelessness (PEH).

Discussions, which were led by EbE throughout the project, reiterated that trauma was common and often started in childhood, and followed by further re-traumatising events. Karl commented that while he remembered in vivid detail what had happened to him as a child, he often could not recall what he had been doing last week, highlighting the lasting impacts of trauma. Further discussions highlighted negative impacts throughout life, from relationships, education, employment to mental illness, suicide and addiction.

We reflected as a group that PEH are often viewed through a lens that considers only their immediate needs; shelter, clothing, food, and healthcare. Drawing on Maslow’s hierarchy of needs we considered that only the bottom two tiers are the most consistently met, but belonging and esteem much less so. The Experts by Experience felt that people need to be given a chance to grow in more holistic ways across all tiers of the hierarchy in order to become healthier and happier.

Tonkin’s model of grief proposes a way to see a happy and meaningful future focusing on growth around the grief. From these discussions, we collaboratively designed the graph below, which superimposes Maslow’s hierarchy of needs with and adapted version of Tonkin’s, in a model to inform ongoing and future work.

We have begun to explore this model through three core project strands:

1. an innovation fund for which EbE were responsible;
2. participation in an accredited Northumbria University module, and
3. through understanding the impacts of involvement with the project.

The innovation fund pilot involved the development and implementation of five creative projects providing sustainable and varied opportunities for self-care, learning, and physical activity for People with Experience of Homelessness. One of those, the Hope Project, gave opportunities for 189 PEH to take part in new creative, social, or physical activities. Steven designed the Hope Project on the premise that ‘people need happy memories’, which those who have experienced trauma do not always have, to draw on when the going gets tough. Barnie explained that often people lose the motivation and ability to cook for themselves when they have lived on the streets. He designed cookery classes with a train the trainer model, meaning that many people have since benefitted from eating healthier food that they had cooked themselves. Lee set up a bike repair workshop so people can take part in physical activity and be more self-sufficient.

Being given the opportunity to manage a budget, help others and having the status of university student (“I have been called many things; it was nice being called a student!”), stood out as having had a positive impact for many of the Experts by Experience. Lee and Porl said that opportunities to shape the project and develop their skills as researchers led to them feeling trusted and valued as equal members of the project team. Further to this, involvement in the project gave a sense of purpose and belonging, and increased confidence for many EbE.

This supported the notion that it is possible to grow around trauma when we attend to people’s experiences, hopes, talents, potentials and ambitions, as well as their basic needs. It also challenged us, as researchers, to think of research not solely as a detached enterprise, but as an inherent part of a system that can support people to grow and have more positive and valuing experiences.

*This blog has been written in memory of Ben

References:

• Irving, A. & Harding, J. (2022) The prevalence of trauma in people who have experienced homelessness in England. Available at: https://www.oasiscommunityhousing.org/wp-content/uploads/2022/10/The-prevalence-of-trauma-among-people-who-have-experienced-homelessness.pdf
• Maslow, A. H. (1954). Motivation and Personality. New York, NY: Harper & Row Publishers.
• Tonkin, L. (1996). Growing around grief – another way of looking at grief and recovery. Bereavement Care, 15(1), 10-10.

Image:

1. Photo by Matt Collamer on Unsplash