The themes from the interactional data and interview data were brought together to form two core concepts that characterized participants' experiences and perceptions about parental involvement when diagnosing shunt malfunction. The first concept related to the challenges when establishing a diagnosis of shunt malfunction in children. The second concept related to parents' and professionals' perceptions of collaboration, and the practices of health professionals that enabled or hindered effective collaboration. The concepts and associated themes are presented in Table 6.
Establishing a diagnosis of shunt malfunction
For both parents and professionals, a significant feature of managing hydrocephalus in children was establishing whether or not illness symptoms were evidence of shunt malfunction. Professionals recognized the role of parents' knowledge of their child and the need to take account of their concerns in the assessment processes. However, there were variations in parents' experiences of having their views valued, illustrated in the following interview extracts:
One nurse said you know your daughter best and how she is in herself. So they do listen to you. Well they did to me and my concerns. I mentioned it (the shunt) and they said they'd get it checked straight away and they did.
Admission 10, mum
I am not sure if they (doctors and nurses) believed me at first, I kept saying this was not usual. Although they listened they didn't really seem to believe me.
Admission 1, mum
Conversation analysis of the interactions provided evidence of both a bilateral and unilateral style of communication between parents and professionals. ‘Bilateral’ collaboration occurs as a process of negotiation, whereas in a ‘unilateral’ approach, health professionals operate, in the main, independent of their interactions with the patient. First, the ‘bilateral’ example is presented where there is evidence of effective communication with the parent to elicit information about the child's symptoms and collaboration to diagnose the problem (Table 7).
Table 7. Eliciting and valuing parents' concerns – the ‘bilateral’ example
The sequence begins with the doctor inviting parents (‘you’ corrected to ‘your’) to offer a reason for their child's illness symptoms (lines 1–4, Table 7). Although the doctor's turn in line 5 is unclear, it is followed immediately by the mother taking a turn where she offers a possible reason for her concerns (line 6); ‘obviously concerned about the shunt’, with an emphasis on ‘obviously’. The sequence progresses in lines 6–18 as a dialogue between the parents which builds on and clarifies the information initially provided. During this exchange, there is no interruption from the doctor. His next turn (line 19) is essentially a clarification and acts as a continuation prompt, evident in lines 20–26 where parents continue the narrative relating to their concerns. The sequence concludes with a receipt of parents' accounts by the doctor (line 28).
The second example (Table 8) illustrates a more ‘unilateral’ style of communication. Although the purpose of the doctor's turns in the openings of the interactions presented in Tables 7 and 8 are aimed at soliciting the parents' perceptions about the likely cause of their child's presenting symptoms, the turn designs have contrasting sequential consequences. In the first sequence presented (Table 7), the second action in the opening turn (line 1, Table 7) is designed as an open invitation to parents to offer a reason for their child's illness symptoms. In contrast, the second action in the turn in line 1, Table 8, an assessment is made of the mother's likely concerns prior to seeking the mother's view (line 2). The turn design is shaped to produce a ‘preferred’ response'; the mother could have agreed with the doctor's assessment but she offers a related but alternative ‘dispreferred’ response (line 3).
Table 8. Eliciting and valuing parents' concerns- the ‘unilateral’ example
The doctor's offer in relation to the reason for the mother seeking medical advice and the mother's response appears problematic; he corrects his offer from ‘your concern’ to ‘you think’, there is a pause before completing his turn and falling intonation at the end of the turn (line 2) suggesting he does not necessarily concur. Following the mother's offer of an alternative explanation for her concerns (line 3), the sequences progresses (lines 4–25) with an expansion of the initial invitation (line 1); the mother offering reasons for the child's illness symptoms and the doctor responding. Explanation-response sequences in medical encounters have been described in depth.[28, 29] Typically, doctors may leave elements of patients' explanations unacknowledged as they focus on the tasks of the medical consultation. However, as in this extract in Table 8, doctors may also disregard patients' explanations and insert their own explanatory responses, which can lead to conflicts between the viewpoints of the doctor and patient.
Doctors' responses when soliciting patients' (or parents) presenting concerns are crucial in establishing or rejecting the legitimacy of the presented problem. The doctor ‘receipts’ the mother's concern with ‘ok’, this acknowledges, but does not address her prior turn (line 27), indicating a rejection, or at least a down-grading, of the legitimacy of problem she presents. The sequence concludes with a receipt of the mother's account by the doctor (indicated by ‘fine’ in line 29), and the turn continues without pause to a new sequence and topic proffer in the form of an invitation. During the follow-up interview, the doctor recognized the mother as having considerable experience in relation to identifying the signs of shunt malfunction in her child; the child had undergone a considerable number of shunt-related operations. However, the mother perceived that her views during the encounter were not valued.
Parents know the child far better than you and know when their children aren't well. Mum is probably as experienced as anyone in terms of shunt problems and the symptoms that (child's name) shows. Shunts are very difficult so we are obliged to treat everything seriously, especially if parents have concerns. His symptoms aren't always the text book symptoms.
Admission 2, junior doctor1
They don't seem to take on board what you're saying.
Admission 2, mum
Establishing a diagnosis of shunt malfunction based on clinical symptoms is difficult; uncertainties related to differentiating between symptoms that might be shunt related and those of common childhood illnesses, particularly viral infections. The relationship between participants' initial impressions and the admission outcome, in terms of the symptoms being shunt related, were variable. The examples below relate to the same admission (the child's shunt was revised):
This is not how he usually is and I just knew this wasn't him. He wasn't right he started holding and shaking his head. His behaviour is out of character that it had to be his shunt. I just though what else could it be.
Admission 1, mum
Children at that age pull their ears with an ear infection, so I didn't entirely dismiss the shunt but it did go down on my list of possibilities because clearly he has signs of an ear infection with frank pus, and it was a nasty ear infection. So I thought the ear infection was causing all the problems.
Admission 1, junior doctor1
These were new symptoms, shaking his head, and they were not like usual when (child's name) gets a cold or earache and could be due to the shunt.
Admission 1, senior nurse1
Collaboration: perceptions and practices
Parents' and professionals' struggled with the concept of shared decision making in relation to treatment decisions in this clinical context because following a diagnosis of shunt malfunction surgery to revise the shunt is the only realistic option. For some professionals, working with parents was primarily about ensuring they understood the child's care requirements to obtain consent for treatments. In contrast, professionals also described the value parents added to care decisions and the need to build effective and lasting relationships with the child and family.
I think the value a parent contributes is really quite high and not recognised as such. Where we fall down is actually not to do with lack of that belief but time constraint, when you're on call you're focusing on a set of specific questions of what to assess. I think parents sometimes want to talk about their concerns and anxieties, we don't address that a lot of the time and it can set off a chain reaction for the whole future because a shunt is for life. If set off to a bad start, it can run the whole experience bad over a long term.
Admission 5, senior doctor1
I think they should be involved to some degree and you need to listen to them and explain and usually they are on the same page as you anyway.
Admission 12, junior nurse1
They informed us of everything that had gone on, emm I don't know how to answer that (involvement in care decisions) because they do obviously go through everything with you on each procedure, so you are involved all the time. There's only one decision to be made really and obviously we just want him to be right and want his shunt working. I would not like to think we would have the final decision, but I would also like to think that everything has been discussed.
Admission 13, mum
Vitally important to involve parents. It's about working in partnership with parents' rather than their contribution to decisions. Clinicians obviously deal with children with different problems, so have a better understanding of the problem as a whole, although parents might know their child better. It's essential that clinicians do lead the management, involving parents it's more of a case of making parents understand the condition, or the cause of the symptoms. Working in paediatrics, one of the tenants must be including parents, but the emphasis is on good communication, decision making is more about listening and education.
Admission 1, junior doctor1
Professionals' perceptions of the factors that created barriers to communicating effectively with parents were more likely to relate to time constraints due to workload pressures and environment restrictions such as a lack of privacy when interacting with parents. In contrast, parents' perceived that effective communication with professionals was hindered by not being listened to, being excluded when professionals grouped together to discuss their child's care (for example, during ward rounds) were not kept informed of care plans and received conflicting information.
I needed to know what was happening so I could let family know back at home. I was just having to guess because nobody told me anything.
Admission 7, dad
There is so much conflicting information really. They don't seem to take on board what your saying, that's my feeling. No they really have their own agenda and that's what we are on now their agenda.
Admission 2, mum
Although parents were unlikely to reject care plans offered by professionals, the design and properties of the parent–professional interactions when accepting or rejecting care were different (Tables 9 and 10). In the sequence presented in Table 9, the senior doctor offers his views in lines 3–6 of the child's assessment. An initial plan of care is offered (line 15) which is immediately accepted by the child in line 18. Once accepted, the doctor moves on to providing more details in relation to establishing the cause of the child's illness symptoms (lines 24, 27, 30, 32). Although a diagnosis is not established, both the child and mother orient themselves to accepting the plan of care, evident by immediately responding to the doctor's turns, with ‘ok’, ‘yep’ and ‘that's fine’ (for example, lines 29, 31, 33). These features are typical in medical encounters when there is acceptance of treatment decisions.
Table 9. Agreeing a plan of care Table 10. Rejecting a plan of care
When rejecting care plans, interactions with parents become problematic, the sequence presented in Table 10 demonstrates active resistance to the care plan offered. The doctor's turns are punctuated with pauses, changes in pitch and hitches when delivering a possible diagnosis (lines 3–5) and when suggesting a plan of action (for example, lines 11–12). In contrast, the mother's turns are even in tone, measured and controlled (lines 18 and 23). The doctor's plan of investigations is not accepted by the mother, this ‘dispreferred’ response appears to result in the subsequent sequences being problematic (lines 3–6, and 14). The mother's responses are quiet and she emphasizes, evident by a fall in intonation, that she would resist ‘pressure monitoring’ (line 13). The mother builds a case for the investigations which she believes are appropriate in lines 18, 19 and 23. The doctor resists the mother's suggestions and moves to close the sequence, ‘well at this stage we'll need to get a CT’ in line 24. This turn is delivered at an even pace without the pauses and changes in intonation evident in his prior turns. The mother in her pre-closing turn ‘receipts’ that she understands this sequence is closing with a quiet ‘right’ in line 26. The quiet responses coupled with the no response (line 28) suggest the mother does not necessarily concur with the care plan. Doctors are orientated towards patients accepting treatment offers; resistance places the doctor in the position of having to encourage the patient to accept the treatment or offer an alternative. In contrast, patients, as in the example presented in Table 10, do not necessarily conform to the doctors' preference for agreement, challenge prepositions and maintain contrary preferences.
The descriptions of parent–professional interaction presented in Tables 9 and 10 differ in the way that care plans are presented and negotiated. In the first interaction, a definitive course of treatment is not offered, but alternatives are provided for further consideration in relation to establishing a cause of the illness symptoms. Deciding the cause of the child's illness symptoms is framed in a way that any decisions will be based on agreement between the child and the doctor evident by the use of ‘we’ and ‘our’ (‘we are going to have to scratch our heads together’, line 24, ‘think about what we need to do’, line 25, ‘let's have a think’, line 32). In contrast, decisions about the type of investigations that will be undertaken in the second interaction (Table 10) are presented as information giving and the discussion is centred on medically controlled options consistent with a unilateral approach to parent–professional collaboration.
A range of factors that facilitate or hinder effective parent–professional engagement were identified. Parents' and professionals' identified listening, information sharing, valuing parents' experiences, establishing rapport and continuity with the professionals providing care for the child as ways of effectively engaging with parents. Establishing rapport has been recognized as one way of engaging effectively with parents[33, 34] and was evident during the conversation analysis of the interactions. In the sequence presented in Table 11, rapport building is evident from the beginning of the senior nurse–parent interaction (lines 1–8) when the child's recent hospital admission is summarized. The nurse enabled the mother's ‘telling of her storey’ which is evident by her acknowledging the mother's talk with minimal utterances, such as the ‘yes’ in line 58. In her pre-closing sequence, the nurse offers support for the mother's decision to bring the child back to the ward ‘it's always best to come emm (.) and get it checked out’ (line 69), ‘for your piece of mind’ (line 70). The mother's narrative is primarily presented in her own terms, and the nurse's responses display understanding, empathy and agreement with the mother's account.[33, 34] Listening to patients' stories is one of the ways professionals can attend to patients' concerns and understand their illness.
Table 11. Effective parent-professional collaboration: rapport buildings