Hi SD peeps, another question for you. OK, so the majority of my users for a proposed Health Intervention are people who are HIV+. There are a lot of issues around people living with HIV talking about their relationships and lifestyles. There are a lot of sensitivities and the probability for someone to become upset or unhappy (even if they have volunteered to be interviewed) is pretty high.
It is extremely difficult to get any sort of access to users (EVERYTHING has to be approved by a university ethics committee).
Has anyone else been in a similar situation? Can you share what approach you took? I was going to ask if there are alternative tools to a Customer Journey Map, but I think it's not the tool that's the real issue, it's the territory, this is risky business. Even a simple question like 'are you in touch with your family?' can be a minefield. My interest is in behaviours around technology use and behaviours around accessing healthcare information, lifestyle as it relates to diet, exercise and wellbeing. Sexual behaviours can be an important component of these issues for some users, so again, more sensitivity....
Any thoughts or advice appreciated!
thanks
Irith
Tags: behaviour, change, confidentiality, customer, ehealth, journey, maps, mhealth, research, user
Let the potetnial interviewees know what the subjects for the discussion are prior to volunteering. Let them know if they are uncomfortable talking about particular subject to let you know. I usally find that even when they say "don't go there" once they get talking, they go there anyway. I think just knowing they have the power to dictate the terms of the converstation and some semblance of control is reassuring.
Thanks Dwayne, that's very helpful. I am in the middle of writing the ethics approval application and I thought of something similar, so I've put into my 'interview schedule' that while sketching the journey map we can use a 'no access' sign, so the participant will be aware before we start that they can control where the map 'goes'. Part of my challenge is reassuring the ethics committee, not sure if 'participant control' will be enough for them... will have to investigate that issue too.
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