Initially, I pointed out a gap in existing literature concerning hospitalised CYPs’ narratives of their experiences of hospitalisation. Questions were also posed concerning the lack of literature about CYPs’ experiences of HS, from their perspective, which appears vital particularly as many CYPCCs go in and out of hospital frequently and thus receive a large proportion of their education from HSs. The current research builds on existing knowledge about CYPs’ experience of hospital, for example concerning health-related identity, key relationships in hospital with adults and other hospitalised peers, the importance of family, and the significance of medical intervention and physical pain in CYPCCs’ hospital
165 experiences. Furthermore, the current research contributes original findings regarding CYPCCs’ personal development during their time in hospital and CYPCCs’ coping strategies, for example learning about other medical conditions, which facilitates the acceptance of their own health status. Furthermore, findings also indicate that CYPCCs’ ambitions and goals for the future may contribute to their short-term coping.
The present study also spearheads knowledge in the field of HS in terms of practice and the experience of CYPCCs, which paves the way for further research in this area. Findings indicate that for some CYPCCs, HS (including HS teachers) is integral to their hospital experience, particularly in relation to the academic and emotional support they receive from staff, as well as opportunities to interact with other hospitalised CYPCCs. However, this was not the case for all participants and it was evident that for some CYPCCs, HS and HS teachers were not perceived as important to their hospitalisation experience.
6.2.2. Contributions to the field of narrative methodology
The present research contributes to theory in terms of developing understanding about narrative methodology. I conclude that narrative research with CYPs has been valuable in generating CYPs’ event and experience narratives, which provided important insights into their interpretations of key events during hospitalisation and HS. I conclude that the adaptations made to suit the CYPs were necessary and effective in facilitating their access to the narrative interview, as discussed in Table 27.
166
Table 27: Reflections on how the adaptations made to the narrative interviews effectively facilitated CYPs’ access to the narrative process
Adaptations and considerations made to suit the needs of CYPs
Reflections on how the adaptations facilitated CYPs’ access to the narrative interview
1. Storyboard used in interviews
The storyboard used in the interviews was a beneficial framework and useful for all the interviews. Not only was the storyboard familiar to the participants, as anticipated, but it also helped CYPs to conceptualise their life in terms of a ‘story’ with discrete ‘chapters’ and was a visual reminder of the story concept throughout the interview.
2. Additional
resources, including a variety of different coloured shapes
The additional resources, including a variety of different coloured shapes allowed for CYPs’ creativity of expression, which I argue is advantageous. Researchers should be open to this and embrace creativity, resisting the temptation to view it as ‘wasted time’, but instead affording the
opportunity for CYPs to become excited about and immersed in their narratives, which is likely to produce more detailed and fuller narratives. Sajid, for example had the idea of using a heart shape ripped into two to symbolise his worst moment which represented being ‘heartbroken’. This conveyed the significance of Sajid’s worst moment and gave me additional clues about the meaning the event had for him, which may not have been evident without the creative use of additional resources.
3. Conceptualising the narrative as a book with chapters
I conclude that conceptualising the narrative as a story, in terms of being a book with chapters was effective as it was understood by all participants and was familiar to them. However, I urge narrative researchers to be flexible in how the idea is conceptualised. In this study, not all CYPs liked books and so this could be off-putting for them, even before the interview had properly commenced. It is important for researchers to be flexible about conceptualising the ‘story’ idea, for example as a film or comic book, which was beneficial for some participants in this study.
4. Wording of narrative interview questions
I reflect that all interview questions appeared to be understood by CYPs, which was positive, except one referring to the idea of a ‘turning point’. Only two participants fully grasped this notion and I therefore recommend that researchers consider how this idea might be explained in a more child- friendly and/or visual way. Alternatively, this question may be eliminated from the interview guide altogether.
I conclude that CYPs appeared to enjoy the narrative interview evidenced by high levels of engagement. Rose’s mother attributed Rose’s commitment to her desire to be “constructive” in the sense of doing her utmost to help others or ‘give back’ resulting from
167 her illness. I considered this an interesting response from Rose, and wondered whether other CYPCCs may have similar responses to ill-health, and may therefore demonstrate similar levels of engagement in the narrative interview process. Furthermore, I considered whether high levels of engagement in the interview were associated with boredom in hospital.
In addition, most participants responded positively to the question of how they were feeling at the end of the interview. Farah was the only participant who was “a bit upset”, although this was not due to the interview process itself but from the fact that it was her last day at the children’s hospital and she had had several interactions with others during the interview saying goodbye, including a particularly emotional one with her friend’s mother. Nevertheless, Suzan noted that she felt “nice” after the interview as it allowed her to reflect on past experiences of hospital and HS, which also helped her to see her personal progression since her first arrival at hospital. Sumayah too found the narrative interview an enjoyable and beneficial experience, as it offered her the opportunity to talk to someone about her life experiences. Moreover, Sumayah noted that she felt “comfortable” in the interview because it was “more informal than formal”, which is a point of consideration for researchers wishing to engage CYPs in narrative research.
Finally, I conclude that the present research has highlighted the potential value of parental presence during narrative interviews with CYPs. Although Sajid’s mother at times detracted from Sajid’s narrative, expressing her own experience as a parent, she also contributed
168 positively to Sajid’s production of his narrative. Sajid’s mother for example may have remembered something which Sajid did not, which then prompted him to expand on his mother’s contribution. I urge fellow narrative researchers to consider this when interviewing CYPs. However, I also encourage researchers using narrative methodology with CYPs to exercise caution to ensure balance regarding parental contribution to safeguard CYPs’ own words. It is more beneficial if parents do not talk over CYPs during the interview and/or suppress their narrative, which could be facilitated by the researcher setting out expectations or ‘ground rules’ at the start of the interview, emphasising the supporting role of parents and/or giving parents the opportunity to have their stories ‘heard’ beforehand.