What fffunction learned from sensitive research around life-limiting illness
By: People For Research
Tags: User Experience, User Experience Design, User Research, User Experience Research, UX

Dan Goodwin, UX Director at Bristol-based user-centred design agency fffunction, has offered to share his experience of recruiting users as part of a website redesign and rebuild for Dorothy House Hospice Care in 2014. Dorothy House provide care and support for people in Bath and parts of Wiltshire and Somerset with life-limiting illnesses, so approaching the user recruitment required a higher level of care and empathy.

As part of the process of the redesign of the Dorothy House website, fffunction wanted to learn about people who have been affected in some way by a life-limiting illness. In the discovery phase, we worked with members of the Dorothy House team to determine the various user groups and to work out a practical, yet sensitive approach to interviewing people who had been affected by a life-limiting illness.

Patients themselves are a key group of users, but we all agreed that attempting to recruit and interview a group of people in this position would be: potentially very difficult for researchers and participants; logistically challenging; and, above all, insensitive. Instead, we decided to focus our research on carers. These are people who care for a family member or friend who has a life-limiting illness. Dorothy House was confident that they could find a group of people in this role who would be willing to help the organisation by participating in the research, and who would be really useful in providing relevant insights.

To be explicitly clear about these research participants, they are people who have typically been thrust into the role of carer. They’re not experienced carers, they generally have jobs, busy lives, often a family to look after. They have been responsible for supporting a patient in a wide variety of ways. This might include practical and logistical support (e.g. getting patients to appointments) right through to aspects of personal care. Also, our participants had been through the experience of the patient dying.

We knew that interviewing these participants would require levels of sensitivity and thoughtfulness greater than those required in a typical research project.

Here are some of the key considerations and steps we took as we recruited and interviewed participants.

Using available expertise at every stage

Dorothy House had trained and experienced staff members who were used to dealing with individuals talking about the difficult subjects that we knew would come up during this sensitive research. We used this knowledge and expertise at every stage, from selecting suitable participants who they expected would be willing to help, through carefully checking the semi-structured interview themed guides that we used to steer our interviews, to providing post-interview support. You can read more about this below.

Tailoring the interview arrangements and circumstances to the participant

We always aim to offer a range of options for interviews in terms of both medium (e.g. face-to-face at home, face-to-face at a ‘neutral’ location, phone, Skype/online with or without video) and time of the day. In this case, we worked hard to be as flexible as possible in order to accommodate the needs of these participants and to help them be as comfortable as possible throughout their involvement.

Being even more conscious than usual about the quality of the interview conditions

For phone and online interviews, we were careful to make sure that we had good quality, reliable connections, and that we always had backup communication methods in case anything went wrong (imagine having to abandon a call which had reached a sensitive point because of technical trouble and not being able to pick it up with the participant). We made sure that the interview location was quiet and without interruption and we encouraged the participants to do the same.

Acknowledging and being open about the situation

We were careful not to skirt around the fact that participants have experienced the death of a family member or friend and that the sensitive research and the interviews would involve talking about it. We were ready to use the words ‘died’ or ‘passed away’ in interviews.

Giving participants full control over the interview process

We made sure that the participants knew that we understood how difficult and sensitive this kind of subject is. Participants could choose not to talk about anything they weren’t comfortable with (and interviewers would be careful to not steer the interview back to anything that they’d noted participants didn’t want to talk about). Participants could drop out of the process completely at any point, from recruitment through to us using insights from the research. Participants knew that, if they did, we’d remove all information relating to their involvement through the entire research and design process.

Using silence and giving participants time

We’re always careful to allow silence and time for thought during the interviews. For the interviews where we anticipated that participants may get upset and find it difficult to keep talking, we were even more careful. Participants did get upset, and some did cry. Typically they’d be apologetic and we’d be careful to say they had no reason to apologise and give them time and space to continue.

Having a professional counsellor on call

We were always upfront about the fact that we were researchers, not employees of Dorothy House and not trained counsellors, but we always had someone at Dorothy House available on call to provide support and counselling to participants should they need it. This required careful logistical planning, given that interviews were generally conducted remotely and at varying times throughout the day. We were careful to reiterate at the start and end of every interview that this type of support was available.

Consider the needs of researchers

We would only involve the most experienced researchers in these interviews since they called upon the highest level of supported active listening and interviewing skills. We also made sure that support was available to researchers who may find conducting interviews emotionally difficult and draining. We were careful to ensure that researchers had plenty of time to rest and recover from each interview.

Reading these considerations, you’d be forgiven for thinking that they should be applicable to every piece of research involving qualitative interviews, and you’d be right. We were just extra careful to apply them to this sensitive research subject. Our experience is that this kind of sensitive research is challenging for everyone. The pay-off is that, in addition to the valuable insights which it can bring to a project, it can be even more rewarding and satisfying for the researchers involved.

Originally published at peopleforresearch.co.uk

Click here to download our “Guide to recruiting users for sensitive research”

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