Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents

Setting the tone: the form of disclosure

The period around diagnosis was important in influencing patterns of communication. Parents described assuming an executive-like role during this time, managing what, when, and how their children were told about their illness. This role was tacitly negotiated with them by doctors: the diagnosis was usually disclosed by doctors to parents first, without the patient present. Rarely (two families), the parents and patient were told together. In choosing to disclose to parents first, doctors were acknowledging the authority of the parental role. Subsequent discussions between parents and doctors about how communication with the patient should be managed served to recognise the value of parents' special knowledge of their child's character and to establish the primacy of the parental voice in managing communication with young people.

We were actually asked—um—whether, we should, you know, whether we wanted [son's name] to know what he's got, weren't we? I mean [to son] it's very difficult to hide it from you at your age, but [laughs] we were asked if—if um you know, knowing you whether you [wanted] to know. Parent 10 (son aged 15)

Children expressed a range of views about the form of the disclosure: a few thought it was better to hear the news at the same time as their parents, some thought it was more appropriate for their parents to be told first, and others reported no strong feelings either way:

I like the way they did it, that's good, yeah. Because that way mum knew first—I felt—I felt okay about the way that [the doctor] told me. Patient 10 (male aged 15)

Interviewer: If you chose between them telling you both at the same time, and them telling your mum first, would you prefer one over the other or don't you really mind?

Young person: Telling us both at the same time

Interviewer: Yeah. Why is that?

Young person: It's like my mum keeping a secret from me. Patient 5 (female aged 12)

In contrast, all but two parents who expressed a preference wanted to be given the diagnosis without their child being present, and before the patient was told. These accounts reflected parents' need to manage their identity as strong and optimistic, and their fear of upsetting their child. Parents expressed considerable apprehension about “breaking down” in their child's presence, and thought they would be better able to support their son or daughter if they could first “compose” themselves. The young person's presence when breaking the news could also prevent parents from asking key questions:

But the thing is you can't react because obviously you've got your child with you. So you think, “Oh I've got to be strong for my child,” who's trying to be strong for you so … Well there was certain things that we didn't want to discuss in front of her, you know, what is the prognosis type thing, in case it was really, really bad … As soon as she left that was the first thing we asked. Parent 13 (daughter aged 15)

Other parents conveyed their dread of the moment when their child would be told and the difficulties of dealing with their reactions. Although doctors usually urged otherwise, a few parents opted to dilute or delay what their child was told:

But we decided not to say anything to [her], she was only 10 years old and we thought oh no, we, we can't tell her. But we were advised by the doctors um you know Dr Z, that … she'll see a lot of children with cancer, and she will know about it, so it's best if she's told. And we said yes, we—we do understand but we didn't want to tell her immediately … we felt so bad at keeping it um from her but we just couldn't tell her … I really wanted to tell her and then at the same time I was trying to protect her. Parent 12 (daughter aged 14)

The role of parents: communication executives and information boundary setting

Over the course of the illness, some families described adjusting their management of communication away from the “executive” controlling and directive model towards a partnership based model, with the young person and parent roles becoming more equal and communication becoming more open. In other cases, parents described continuing to orchestrate when and what their child was told.

The young people talked in detail about the part that their parents played in communication, describing the overlapping roles that their parents performed within both the executive and partnership models (box). Parents' accounts of their roles were broadly similar to those described by the patients. Both parents and young people described how parents were often involved in setting information boundaries and in censoring or filtering what the young people were told.

Young person: I used to ask a lot of questions about the books mum used to write in …

Interviewer: What sort of books, were they to write down …?

Young person: Well, how much treatment I needed and how much, how well I am.

Interviewer: And did your mum explain those things to you? [Pause] You said you asked her, she told you what they were did she?

Young person: Not always … only once or twice. Patient 7 (male aged 8)

I don't think they [staff] spent an awful lot of time explaining to [him] … I was worried about what they were going to say anyway. So I was better—it felt better because he's been told when I told him, and I was all right with that. Parent 2 (son aged 10)

The young people differed in the extent to which they were satisfied with the executive style of communication. A few, particularly those whose priority was to ensure that their main source of information was someone with whom they had a close and longstanding relationship, seemed to welcome it:

Because the doctors talked to my mum and dad and then I—I really did like my mum and dad talking to me, because it was nice coming from—people I'd known and I can trust. Patient 12 (female aged 14)

However, the accounts of other patients suggested that they thought communication was constrained by their parents. Some referred to the inability or unwillingness of parents to answer their questions; others questioned how the information boundaries had been defined and expressed unease at the perceived disparity between how much information they had been given and what their parents had been told:

But I still didn't feel that they were telling me everything, but they probably did but … [my parents] were in there for like ages and ages and so they only told me like, not that much, so I don't know what they were being told for ages and ages. Patient 13 (female aged 15)

Young person: They didn't tell you much, they—just told you what—just the minor things, not much, they [health professionals] told mum and dad more, lot more than what they told the child …

Interviewer: Right and what did you think about that?

Young person: Mmmm—better if they could tell you most things because most people like to know what's wrong. I know I did. Patient 8 (male aged 10)

Clearly, parental involvement in communication, particularly in setting information boundaries, could at times be problematic for young people, particularly if there was discordance between a patient's need to know and a parent's efforts to limit their access to information. But this did not mean that the young people regarded their parents' involvement in communication as inappropriate in principle. Young people's accounts showed how their preferences were fluid and depended on context. Reflecting work with adult patients on awareness contexts, and differing levels of knowledge about life threatening illness, almost all the young people at times embraced, or even actively cultivated, their parents' role as “buffers” to limit their exposure to information17:

But I felt that what [the doctor] was going to speak to my mum and dad about, I didn't really need to know about it that much. Just something for mum and dad to be concerned about, I didn't really need to know about it so—I thought that was the best thing. Patient 10 (male aged 15)

But when they think it's something which is not really to do with the child, I think they shouldn't actually tell them … [things] which are just between the doctor and the parents and the nurse. I think they should keep it off the children until they're a little bit older. And they understand a bit more. Patient 7 (male aged 8)

Young people's social positioning, communication, and relationships with health professionals

Prominent in the young people's and parents' accounts were the issues of the young people's social positioning (relative to adults) and questions about their dependency, vulnerability, and competence. Young people were acutely aware of their own position and talked in detail about the importance of age and maturity in mediating what and how young people ought to be told. Importantly, however, their age was not particularly useful in explaining either their own or their parents' accounts of communication. For example, some of the youngest wanted detailed information whereas one of the oldest wanted only “the basics.” There was also variability in the young people's beliefs about the ages at which specific competencies could be expected and the appropriateness of health professionals' use of “child friendly” language and communication techniques. What united all of the accounts, however, was young people's use of their parents as a resource to manage communication. Their ability to use parents in precisely the way they preferred depended, however, on their parents' cooperation.

Young people's dependency on their parents as brokers in the communication process arose because they did not, for the most part, see themselves as having direct access to information through their own interactions with health professionals, particularly doctors. The young people saw themselves as occupying a marginal position in consultations, and some thought that their priorities were of little interest to medicine:

Young person: I probably wouldn't ask what something meant … just cos I might look stupid … [I] don't really mind that much about all the facts, I don't want to know that much about all that. I just want to know all the silly things, like …

Interviewer: Silly things?

Young person: Well, not like important things, like your hair and school and things like that.

Interviewer: And you don't think they're important or …?

Young person: Well I do but they probably don't because it's not like medical stuff. Patient 13 (female aged 15)

Consultations were largely carried out between parents and professionals, and seemed to leave the young people without a voice:

I think sometimes they talk to both of us, but sometimes they—I find they do just talk to mum and I'm just “hello? “I'm sitting here” … especially with the consultants, it's just talking to mum. You know, um “hello?” Patient 11 (male aged 15)

The young people therefore subjected their interactions with health professionals to considerable critical scrutiny, and they were highly conscious of the differences in the status and working practices of different categories of professionals, particularly doctors and nurses. Some did not see “emotional labour” as a duty of doctors, whereas they did see it as something that nurses undertook, and many felt more at ease talking to nurses18:

The doctors just tell you things but the nurses sit down and explain it and everything. Patient 3 (female, aged 10)

Well I kind of choose who I want to [ask], cause there's like some people who I wouldn't ask and some who I would, who I know will tell me exactly the truth. Cause I wouldn't like—I don't really—some of them I don't think will tell me the truth. I wouldn't ask a doctor, no offence. Patient 13 (female, aged 15)