“One reason for the poverty of ethnographic research in this area might simply be the difficulties of access”.
Ikhlaq Jacob
@ikhlaqjacob.bsky.social
All views are my own. Please reference my work if you use it.
All the visits I made to towns and cities over decades, people never asked whether I authored a paper or even a book (and rightly so). They were interested in me as a individual, this was the start of the trust and genuine rapport building.
I spoke to over 800 local people, groups and diverse communities: the ‘hard to reach’ for the INCLUDE Study in Bradford and Leeds during the summers of 2024/25. Thank you everyone. @auasresearch.bsky.social
Gatekeepers are an invaluable source of help I have engaged with them in Bradford, Birmingham, Keighley, Leeds, Leicester, London, Manchester, Sheffield, Slough and elsewhere for decades. And the very many diverse groups and communities. Engagement is longitudinal. Thank you.
From my decades (not just 3 years) of experience of health and social research with the British South Asian and Black/Caribbean communities. Shared decision making has always been an ethical dilemma in research yet overlooked. (Ikhlaq Jacob)
For many British South Asians health terms can be fluid where language and words are used interchangeably. There are many examples: ‘old’ age, weakness, obesity, frailty, fatigue or disability are context and culturally depended when used in health-related terminology.
My earlier work showed that many older South Asians were using shopping to get exercise or by walking to their place of worship. Most were living in multi-generational households and getting out of the house for fresh air was important for their mental well-being.
It’s not about joining in a game of football but it’s joining in with the local community.
Encouraging older South Asians in Bradford to ‘get up and move’ or to get in extra steps during the day, for example going out shopping. For those mobility issues suggesting chair exercises. Need to be culturally and community focussed.
Cultural Context: Words, meanings and understandings can be lost in translation. It’s the question we ask but also how the person on the other side understands it.
Are we talking about the same words? British Pakistanis who speak Potwari (dialect) the lack of standardised vocabulary complicates translation and meanings. For example, when ‘frailty’ or ‘obesity’ are used the researcher needs to be aware of the nuances of the local dialect.
Lost in translation: ‘Frailty’ means ‘kamazori’ in Potwari but it can mean different things. It’s contextual for British Pakistanis for example, a person can be kamazor due to hearing impairment, having pain or related to mobility (part 2/2).
Most British Pakistanis speak Potwari/Punjabi but the dialect has little consistency in the meaning of words, it’s an unwritten vocabulary. The words are lost in translation for example, ‘frailty’ is context dependent and has many different meanings (part 1/2).
Cross-cultural interviews are difficult to undertake the meaning of words can be lost in translation making thematic analysis more difficult. For example, ‘family’ in the Western sense often means ‘nuclear’ but among British Asians often means the ‘extended family’.
Informed Consent: It’s a Dynamic Process: In research communal decision making can override individual autonomy especially when participants are non-English speakers the family will check if the research is suitable. It’s often a collective shared decision.
The Missing Link? Diverse audiences can interpret research in different ways or they can ignore it if it does not take into account local needs, their cultural beliefs or their lived experiences. Research in the Community (Ikhlaq Jacob).
A BIG THANK YOU! Last year I spoke to more than 500 people in Bradford working on the Include Study. I visited diverse communities: Indian, Pakistani and the Bangladeshi, visiting Temples, Gurdwaras, Churches, mosques, community centres and many diverse groups. Thank you.
Research is about connections about creating dialogue in the community and that’s important because it’s in the community that you get an opportunity to hear the rich tapestry of narratives. “When I’m out there is no me and them it’s all of us”.
We rarely say …. Thank you to the hundreds of charities and centres around the UK for helping people in need: The list is not endless. @beatedsupport.bsky.social @charitycomms.bsky.social @samaritans.bsky.social @thebhf.bsky.social @familyfund.bsky.social
Health Misinformation can lead to British South Asian people turning to alternative or herbal medicine remedies. This poses a health risk.
Health misinformation was spreading amongst South Asian communities as fast as Covid-19. This had serious consequences for individuals, families and communities especially at a time when the Government was trying to protect the country.
Rapport with research participants? Why this is so important: It starts as a ‘simple’ dialogue between the researcher and the participant, then comes a connection leading to trust. It’s a process. And trust is crucial.
Researchers should never underestimate the power of listening to the participant in a non-judgmental way to what is being said. The interview should flow naturally rather than a question and answer session. The participant is looking for a connection to their story.
listening.to
Alternative or herbal medicine is commonly used among South Asian people in the UK for conditions such as diabetes and blood pressure. Anecdotal evidence can often override medical advice.
Let me introduce you to a Bradford icon Barry the ‘Birdman’ reaching out with a hand of friendship. Research is about making connections with individuals and communities.
As part of the Dying Matters Week I took the palliative nursing team from Bradford Royal Infirmary (Paul, Selma and our senior research fellow Zuneera) to a local community centre holding thought provoking discussions about dying. Thank you to Saqib.
Another day another visit. Thanks again Sharan from the wonderful Gurdwara in Barkerend, Bradford. BIG SHOUT OUT to @auasresearch.bsky.social for allowing me the time to engage with groups and communities. 👍
