Meet the Qualitative Researcher: Steve Marshall
Steve Marshall is a social worker by background, and has worked in palliative care for over 20 years. He led a Marie Curie funded study based on his clinical practice, interviewing 32 children and young people who have a parent who has a life limiting illness.
Sohail: Please tell me a bit about the research you've done and what led you to it.
Stephen: I've always been really interested not only in children who are the patients, but also in working with children who have a parent who died. It's a more common phenomenon then people would realise, about one in 20 children in the UK have had a parent who died. One of the issues from my practice is how difficult it is to include children, and how colleagues find this a really difficult issue when they've got a patient who's got young children and what advice to give them. I thought I want to know what is the best practice and what we can do to support these children better. I wanted to ask children and hear the voices of children themselves about what it's like to have a have a sick parent on what we as healthcare professionals can do better to support them.
Sohail: Did you speak to kids in your job about this beforehand?
Stephen: Yeah, absolutely. I went to various different young peoples advisory groups that support research. One at Great Ormond Street Hospital, one that's connected to the Maudsley, and there's also one connected to UCHI. I went to talk to young people about, and many of them had actually experienced a bereavement themselves and said yeah, absolutely talking to us would be really helpful. So I just kind of feel really passionately that we can't patronize children and we need to give them the opportunities to have their say, and I think we don't do that very often in research.
Sohail: What sort of things can be done better, do you think?
Stephen: I think we, as healthcare professionals, could actually just think about children in a different way, and think about them being a central part of the family. A lot of the children that we interviewed, you would be very surprised by, for example, the amount of care that they provide for their parents when they are sick. I remember 6 year old I interviewed she, you know she took on kind of the same responsibility. Wanted to be good at school. She told me about how when she feels sad she doesn't tell anybody because she doesn't want to be an additional burden to the family. Obviously she used that within the language of a 6 year old, but clearly that's what she was telling me. I think just on a very practical level, like as in the hospital, we don’t see that.
Sohail: How did you start working in that field?
Stephen: I used to volunteer for an HIV charity. And in those days, a diagnosis of HIV was was pretty much a terminal diagnosis. So I was volunteering there and then realised that actually I was comfortable with that area. Then I kind of slid into palliative care because I then got a job working with children with HIV.
I think a lot of people say ‘Oh my God, what do you do?’ And ‘oh, God, that must be awful’, ‘It must be so depressing’ and everything, but I think you'll be very, very surprised. My team is certainly not depressed, I work in a teams of about 20 doctors, nurses, social workers working with with patients in the hospital. We have about 1200 deaths a year in the hospital, so a lot of deaths. I got into it because I always wanted to be a social worker and I was originally working in children and families in child protection.
Sohail: I wondered, do you get approached for advice in your personal life?
Stephen: I'm pretty good at being quite boundaried and I don't really take my work home with me. I think, I chose to do this, they didn't, so they don't necessarily need to hear about it. But recently I've had friends who've had a parent who became known to the local pallative care team, and so yes, I've actually had to give advice to them there. And also then in their bereavement about what support there was available to them as well. I think that's more a sign of the fact that you know, I'm in my 50s and my friends are as well and their parents are dying. I suspect there’s more to come isn’t there?
Sohail: It sounds like a job like this and work in this area might help you grow and develop as a person.
Stephen: Yeah, this has definitely enriched my life. It's made me appreciate what I've got a lot more. I think it's made me realise that time is limited sometimes and actually to make the most of your life. And I think I see a lot of people who don't do that. That frustrates me. But I’m not a saint, you know. I think people think that MacMillan, the nurses and professionals, are somehow sort of saints, we’re not! I can be difficult when I want to be! But it is more than a job. I think it has to be more than a job or else you are going to struggle.
Sohail: Do you have any advice for clinicians wanting to do qualitative resaerch?
Stephen: My biggest fear doing this research was that I wouldn't be able to recruit any children to the research, and in fact the original sample was 20 and we worked really really hard and just had a real strategy and actually did far better than we imagined. It ended up going back to ethics and having it increased to 32 and I'm so proud of that. I think that's a real message that I would want other qualitative researchers. I think people shy away from doing research with children because they think it's just going to be too hard to get through ethics and it's going to be too hard to recruit. But actually, with the right approach children can actually be involved in research. There are barriers in the way, and often parents are barriers in the way, but actually a lot of the parents want their children to have an opportunity to have their say.