Minority ethnic groups’ perceptions of health BME Scoping & Feasibility Study in Glasgow’s South Side Funder: NHS Greater Glasgow & Clyde Marisa de Andrade UKNSCC, London 13 th June 2014

the theory

the reality complex realities extending beyond health where do we start?

structure Objectives Methodology Findings Moving forward

1.gather specific groups’ perceptions of pre-identified & emerging health related issues such as use of tobacco, alcohol, shisha, smoking cessation, acceptability of services, food, social media, trust…. –focus on Pakistani, Polish, Slovakian Roma and Romanian Roma communities. 2.use local contacts & ethnographic methods to acquire data and access local community champions to inform future health interventions and be collaborators in participatory research projects. 3.deliver findings/conclusions in a policy-oriented report specifically related to asset-based approaches. Objectives

structure Objectives Methodology Findings Moving forward

methods & means of data collection Ethnography – involves the researcher ‘participating, overtly or covertly, in people’s daily lives for an extended period of time, watching what happens, listening to what is said, asking questions – in fact collecting whatever data are available to throw light on the issues that are the focus of the research’ (Hammersley and Atkinson, 1995) allows for the ‘study of culture’ and an understanding of beliefs and behaviours of BME groups ‘from a native view’ (Mertens, 1998; Jones et al, 2005)

methods & means of data collection 2 focus groups (n=13; n=7) with Polish men/women (18- 45); 1 focus group (n=7) with Pakistani men (18-34) a ‘spontaneous focus group’ with a Slovakian Roma group of friends and family members (n=7) interviews with representatives from community organisations* (n=35) 78 community members in total over 6 months access to Slovakian Roma & Romanian Roma through community organisations & social workers

structure Objectives Methodology Findings Moving forward

general findings Settling and integrating at different rates difficult to manage emotions and politicisation of inequalities some community members feel provoked that certain services are not in their best interest some recognise the link between unemployment and health Barriers language, anger, poor housing lack of confidence, isolation depression, financial probs informed consent? recording? Stigma – who are you? treated and labelled the same despite being different sspecially Slovakian Roma and Romanian Roma move away from a siloed approach

Pakistani Smoking some confusion – is smoking forbidden or permissible in Islam? generational smoking, younger are health conscious, dirty habit females – ‘behind closed doors’ ‘… the way the girls are viewed in the Pakistani community… is like they are the honour of the house and so on…if the girl was to be seen smoking and stuff they would be, “Oh their daughter, look at her!”… I mean all this extra stuff gets added onto it, “Oh she will never get married and nobody will ask for her hand in marriage!” and all that stuff….’ –youth smoking in public brings shame on the family –general awareness of smoking cessation services, but strong belief in willpower to quit rather than medications or replacements –some reluctant to use NRTs for religious reasons increasing awareness of e-cigs and shisha pens

Pakistani Trust some said they trust their doctors, but a fear of spreading personal information causing shame to the family: ‘… he won’t go to the doctor because his doctor is also his family doctor so his mum and his dad [have the same doctor]... he’s another Asian as well Pakistani, so he is scared that if he goes and speaks to him about certain things he is going to go and tell somebody else even though doctors are not allowed to do that… because it has happened to him before…’ ‘… people talk… because they are not really your friends… too many snitches... they are more associates… they are people in our community, I don’t know why it is, they see, their main concern is meddling in other’s people’s business, trying to find out what other people are doing and making a big issue about that. That is a really big issue in Asian communities. Everybody likes a bit of gossip…’ –NHS has double standards – don’t tell me to stop smoking if you smoke and stop drinking if you drink

is it haram? ‘… smoking [shisha] has never been haram…over the years the scholars and stuff have been smokers and so on and over the time nobody has ever said it is haram. It’s only been an issue since the shisha thing has taken over in different parts of the world it is basically like down South… in Islam you need to have something called a fatwa… and there is not actually a fatwa against shisha smoking to say this is haram…’ ‘… haram is your pig, your pork… drugs, alcohol, all that sort of stuff… smoking [shisha] is not, for me, for what I’ve read up and stuff like that it’s not haram, it’s preferred if you don’t do it. But it’s not haram…’ All Pakistani community members in the study smoke shisha or have friends who do

“What would make people consider [stopping] shisha… is hard based evidence. And also perhaps if, heaven forbid, something happens to someone right, a death or something like that. I think then people might say, “God that might have happened because of that [smoking shisha]”. what would make you quit shisha? ‘… if it was haram, I probably wouldn’t smoke shisha then, I wouldn’t smoke shisha. See if it was haram I wouldn’t smoke shisha…’ ‘It if was harem I would stop… [others agree]… just because the NHS would say it to me I would never stop… if it was harem I would stop that is the only reason…’ don’t trust the facts

Polish Smoking perception was that the Polish are generally smokers, but most community members were ex-smokers ‘education’, background’ and age may have an influence on whether Polish people smoke many considered themselves to be ‘social smokers’ – only smoking with alcohol or when out with friends most ex-smokers had quit for health and financial reasons, but also family pressure smokefree legislation and marketing restrictions on tobacco products considered to have had an impact on cessation community members readily used NRTs, used smoking cessation services or approached their doctor to help quit but serious dislike of doctors and the NHS

Slovakian Roma Smoking high prevalence, start young, difficulty quitting as others are doing it many unaware of the availability of smoking cessation services and products and did not know that they could approach their doctors for help, others had heard of ‘chewing gum’ a core group of Slovakian Roma who had never smoked or were ex-smokers – religious ‘Slovakians will go to the GP, but go back home to for operations. Anecdotally, they [Slovakians] go back for a procedure. There’s semi- privatised healthcare there and many prescriptions are given. They prefer to be given a pill…’ ‘… there is a tradition of gathering on street corners for sharing information and just that’s what you do. You don’t go to the pub you gather in the street more than anything else. And I think that’s particularly true in Slovakian culture…’ ‘I go to a [community centre] to play billiard, singing, music, food… like a party… every week…’ ‘Boys like football, group football… it’s fun….’

Romanian Roma Smoking majority don’t smoke for financial reasons abject poverty smoking cessation services is not high on their list of their priorities as trying to meet basic needs like food and shelter –some mistrust of authority, but some community members are building relationships with community groups who are deemed to be helpful (politics) –fear of social services and children being taken away –some trusted doctors, for others it is only acceptable to confide in family members –language greatest barrier – use pictures –word of mouth therefore community champions needed

structure Objectives Methodology Findings Moving forward

tokenistic engagement vs true asset- based approaches -you can’t go in with your agenda – what you want to get out of a situation -you have to respond to what is there – assets and problems -you may learn from it – but it may not be what you think you will learn -the idea comes from communities – emerges with them -you can’t drip research findings into professional discourses – the process is not directly and linear -communities have to believe they’ve had the idea themselves to actually change – what are they interested in? what are their knowledge gaps in their knowledge? - then develop projects with them

but for this – you need those relationships there from the start to build on

This should cultivate a culture of trust and collaboration with community members, who may be consulted when challenging or conflicting issues arise. moving forward Working with communities and other local partners is an open-ended process. Focus should be on the process. Asset-based approaches require continuous engagement with communities – real, on-going engagement rather than parachuting in to a community to achieve a specific organisational output for a short period of time.

the process continues change in organisational & individual mind-sets, cultures, values tricky for orgs focused on traditional outputs recognise that progressive, upstream approaches may challenge ‘the system’ & way ‘things have always been done’ from needs and targets to assets staff will need to empowered & trained to empower others complex, creative & dynamic process enriched by intuitive responses evidence initially come from case studies & small pilot projects using exploratory research

thank you Marisa de Andrade