CHAPTER THREE: METHODOLOGICAL LESSONS LEARNED
Introduction
3.1 One of the aims of this study was to explore ways Better Together could do research with children and young people about health care. It was therefore important to provide some reflection on the methods used, how well they worked and what might help in future research in this area. This chapter outlines some of the methodological issues emerging from this exploratory research.
Size and Nature of the Focus Groups
3.2 Young people had a preference for being interviewed in groups rather than individually and said they would prefer face-to-face interviewing rather than taking part in this kind of research online.
3.3 For children and young people, groups of two to four participants worked best. In larger groups, particularly with younger children or children who took a longer time to express their views and opinions, at times they became restless while others took their turn. It also took a long time to get round all participants with each question. While we encouraged the discussion to flow naturally, we also made sure each child had an opportunity to answer a question or respond to a topic probe if they wanted to. With large groups, this took time.
3.4 Natural friendship groups were appreciated ("It's better in small groups and like this with friends"). For groups that usually met in another capacity, the chance to sit together to take part in the research was also appreciated ("we never usually get to sit together like this round a table"). One child initially objected to her siblings being invited to join a group that they weren't usually part of.
Research Activities
3.5 During the group discussions, we had to maintain a balance of encouraging all children to talk and participate and enabling individual points of view to be heard. The children in particular found it difficult to take turn; we facilitated this by encouraging turn taking to ensure all views were heard. Younger children were able to get on with activities such as drawing if they could not sustain their listening and speaking activities for the full length of the group discussion.
3.6 Children particularly enjoyed making their own name badges; the word showers (word association); drawing pictures; the doctor activity (drawing the doctor then dividing the doctor into two sides - 'good' and 'not so good'); the question lottery; and being able to record a message for the 'person in charge of the NHS'. These activities were enjoyable for the children but quite time consuming. It may have been appropriate in some circumstances to have met twice with each group, particularly those groups with younger children. We also found that young children were easily distracted in a group setting when others were talking, especially if things were in the middle of the table or if another child was taking a long time to express their views. In groups when one or more child needed assistance with communication, it proved even more challenging to keep the others occupied. To allow everyone the chance to share their views, a smaller group (a maximum of 4 participants) would have been better in some circumstances.
Involving Children and Young People with Considerable Experience of Health Care
3.7 Two of the groups had a majority of participants who were disabled. The participants who were disabled had a wealth of experience of accessing NHS services and were keen to feedback their views and experiences of health care settings and providers. Making sure all the children in these groups were able to participate as much as they wanted was a key aim. For one group, a British Sign Language Interpreter was employed to facilitate participation. Others in the groups needed help to participate in the research activities like making their name badges or the question lottery. For groups of children with additional support needs, it may have been useful to restrict participant numbers (to a maximum of 4) and to allow more time or to have met twice with each group. If the disabled child or young person was particularly keen to share their views and experiences of accessing health services, it may have been appropriate to offer an additional one-to-one interview with this participant.
3.8 Children and young people who had recently stayed in hospital or had recent or extensive experience of health care service were keen to share their views and experiences, often leading discussion and providing useful prompts for further discussion. In circumstances where the child or young person had recent and extensive experience of health care services in this way, it was felt that a one-to-one interview may have been useful. Often the child or young person had a lot to say. To allow others the chance to express their views too, it wasn't possible to probe as fully as we would have liked about the different issues raised by the child or young person. It was felt, therefore, that the group setting may not have been ideal for finding out about the experiences of participants with particularly extensive or recent experience of a hospital stay. This was the view of the researcher/s present. Although children were not asked whether they would like to be interviewed in a one-to-one setting, two groups with young people were consulted about this. They responded that they would prefer the small group setting to a one-to-one interview setting. However, for future research which wants to examine patient experience in depth, interviews containing child centre research activities could be used.
3.9 As those with recent experience of staying in hospital had particularly valuable feedback on their hospital stay, it may be more fruitful, in future work, to focus on those with recent in-patient experience. It is anticipated that recruiting participants who have in-patient experience within 6 months of taking part in a focus group or interview would yield valuable data although further piloting would be needed to verify this. With the relevant approvals, it may even be most beneficial to recruit participants for future research work at the point of discharge from hospital.
3.10 Young people were particularly keen to talk about their own experience of staying in hospital; they also talked about using mobile phones or the internet to access health information and make contact with health service providers. They were also keen to give their views on issues previously identified in health research literature as important to young people: acne, feeling overweight, alcohol or drugs, contraception advice, advice on STDs, smoking, bullying, and feeling depressed. They became more animated when talking about these issues. This would suggest incorporating research activities that including using such technologies might helpfully engage young people in research on health care issues.
Involving Children and Young People through the Better Together Website
3.11 Participants provided limited information about what they would like to see in their section of the programme's website. Some participants expressed concerns about accessing health information online. Children and young people identified difficulties with accessing health information in this way, although young people expressed an interest in gaining information online from peers. There was little time in the group discussions to explore in any detail what the children and young people wanted this website to look like, and they may have had difficulty conceiving of the website in the abstract. One young person suggested she would need to use a computer to share her ideas about what a website should look like. Another suggested a competition to design the website as a better way of consulting with young people about what form this should take. The researchers had difficulty eliciting detailed responses from the children and young people about what they would like to see in their section of the programme's website, due to lack of interest in responding to this probe as well as practical restrictions of the focus group format. It is suggested that group discussions are not the best way to consult children and young people about the programme's website.
Summary
3.12 This chapter has highlighted some of the methodological lessons learned from conducting this study. Many of the research activities that were employed were well received by the children and young people; they also seemed to enjoy participating and having their views heard. Smaller groups worked better and the participants themselves sometimes noted a preference for a small group of about four and for these to be friends. Children especially were easily distracted and the sessions were easier if there were two researchers present. Some of the participants had much to tell and it might be appropriate to combine focus groups with individual interviews and to speak to the children and young people more than once.
3.13 The following four chapters present the findings of the study for each of the six key domains of these young particpants' views and experiences.