4.2. Appropriate Use of Language
Prior to shadowing, one of the researcher’s greatest concerns in talking with patient families was in saying the ‘wrong thing’ or asking a question on a taboo topic. Through shadowing, they found that one should not assume what patients, or their families, will find distressing, and that children were often seemingly unfazed by answering questions on what the researcher considered a ‘sensitive’ topic. In a similar vein, Solberg (2014) found that children that had experienced or witnessed domestic violence were not necessarily upset discussing it, though they sensed “uneasiness
” when one participant suspected that they were about to be asked why their mother did not intervene [45
] (p. 239). Many parents also seemed to enjoy the experience of talking about this subject to an interested listener. Indeed, other researchers have noticed the ‘therapeutic’ or cathartic effect that those answering questions for interviews report [46
]. The researcher also experienced an interview for the study where the parent did not display any distress when recounting an occasion where they thought that their child would die, though they needed tissues when discussing their child being bullied.
Though interviews often draw more implicitly on the personal experience of the researcher in developing the interview questions and the research design, such as a mother interviewing women about their experiences of pregnancy [47
], it is not always the case that a researcher has that level of familiarity with the research setting. When preparing for ethnographic fieldwork (which draws on a range of research methods such as observation, documentary analysis and interviews), a key part of gaining trust and establishing relationships is to learn not only the words used by the group you are observing, but the context in which they are spoken [48
]. Understanding this can lead to a new perspective and new insights, though when undertaking a study using interviews alone, this part is omitted.
Though there are benefits of being a member or ‘insider’ of a group, from long-term or highly implicit understandings that an ‘outsider’ would most likely miss [38
]. A greater benefit is seen from being an outsider, or at least in some ways unfamiliar to the setting. This allows the researcher to ‘stand back’ and be able to see the interactions or events occurring in front of them as noteworthy, strange, or needing explanation to an outsider. However, in reality, most settings are a mixture of strange and familiar elements (such as a teacher researching in a school that they have never taught in), so it is more a matter of degree rather than a researcher being a complete ‘insider’ or ‘outsider’ [47
]. Shadowing could be conceived as a useful way to gain access to ’insider knowledge’ without having to gain the status of an ’insider’.
4.3. Talking with CYP with Serious Health Conditions
While many qualitative research methods textbooks, and journal articles focussing on methodological issues aver the importance of building rapport with young participants [19
] in order to get rich, detailed data,
“The rapport that develops between researcher and child is important for encouraging more forthcoming responses”
very few explain how to go about this beyond “The interviewer asked questions or made comments about the child’s personal life, such as family, school, and hobbies” [52
] (p. 158), or “small talk about the weather, work, participants’ children and how their days had been progressing” [19
] (p. 14). The researcher found literature on researching CYP with serious health conditions was quite lacking in specific detail on techniques for building rapport, beyond using their first name and clarifying that they were not a doctor or nurse [53
], or maintaining a “flexible and creative atmosphere” [24
] (p. 351).
Though in a recent methods book on research with CYP [23
], the researcher found reference to starting interviews with “an easy ice-breaker topic, game or creative method
” (p. 117) and that time invested making CYP “feel comfortable is time well spent
” (p. 112), as “the more relaxed the children or young people feel […] with the researchers and with the research, the more honest, open and interactive they will be
” (p. 110). This methods book also explicitly covers ‘sensitive topics’—anticipating these, using appropriate methods, and how to respond should CYP become distressed. Conversely, the researcher found that literature on researching sensitive issues tended not to consider CYP [54
], and if they did, not to the level of detail of building rapport with them, regardless of a serious health condition [55
However, there are a few exceptions. Bluebond-Langner’s (1978) seminal work ‘The Private Worlds of Dying Children’ does detail that they introduce themselves, explain their role, then ask children whether they can join them in colouring, drawing, or whatever the child was currently preoccupied with. (The researcher was even occasionally “tested
”’ to watch TV in silence until the child decides that they are “OK
” and will answer questions) [53
] (p. 247).) However, Bluebond-Langer’s (1978) research took place over months, with opportunities for daily contact to build and establish relationships with the CYP [53
], which is not available for studies where participants are interviewed once.
Although in the study that the shadowing reported in this paper was undertaken in preparation for, the researcher did arrange a session prior to the interviews where they coloured, drew, talked or played games with the CYP in order to make them more comfortable with the researcher and when speaking with them [14
]. The researcher found that engaging and talking with children with serious health conditions requires a more “practical mastery
”, an “implicit and pre-reflective feel…which guides action within social arenas
] (p. 359). ‘Practice’ of these skills from shadowing can help with their acquisition, increasing ease and comfort when talking to CYP and building rapport.
4.4. Desensitising the Researcher
Although the researcher had been a little ‘teary-eyed’ watching online videos of children [35
] with cancer talking about their experiences in preparation for the study, they had viewed themselves as not that likely to become distressed. They were subsequently surprised that after hearing a parent’s account of their child’s experiences, they were so much more affected than they expected. (Not unlike the title of an unrelated qualitative study, “I can’t say I wasn’t anticipating it, but I didn’t see it coming in this magnitude
Regular meetings with the research team for the researcher to debrief—express their emotions in a safe environment—are often recommended after shadowing in a clinical environment [58
] or interviewing on a sensitive topic [18
]. Given that the multidisciplinary team were disparately located, these debriefing sessions were more ad hoc, though after a few shadowing sessions, the researcher did not feel that they needed further debriefing.