The findings of this study reflect parents’ self-reported experiences of the pathway leading from noticing changes in their child to diagnosis. The parents’ descriptions of their experiences prior to diagnosis provided insights that aided development of the diagnostic triage model, which was subsequently validated. The timespan from first bodily or behavioral changes to diagnosis varied remarkably and ranged from 1 week to 3 years, shortest time span for children with haematological cancer and longest timespan for children with brain tumours (Table 1).
The themes are presented in categories concerning parent’s experiences of everyday life, primary care (GP/Emergency Department) and secondary care (specialised health care in hospital setting). In five themes, we introduce multiple factors that influence appraisal, help-seeking, and obtaining a diagnosis as they are experienced by parents. Finally, we introduce the diagnostic triage model.
Factors related to everyday life
Theme 1: the nature of bodily or behavioural changes
Parents observed various bodily or behavioural changes in their children, mostly described as ‘changes’ and ‘symptoms’. Some changes were of a more general nature, and some more specific, depending on cancer type. Initially, changes were often appraised as non-severe and unspecific or were perceived as common illnesses such as the flu. At this point, parents did not worry particularly leading to a “wait and see” approach instead of seeking help from their GP. A mom explained:
“He was often extremely sick that winter. But I wasn’t really worried because I thought that kids just get sick all the time when they’re little.” (P12, haematological cancer, Mother).
For some parents it was difficult to pinpoint when the first change(s) started as they were not sure whether a specific change was related to the initiation of the cancer disease. They used their former experiences as a reference to find logical explanations for their children’s illnesses within the context of their everyday life. Therefore, bodily and behavioural changes were at times normalised and related to age and daily life events, for example growing pains, minor sports injuries or being a teenager:
“We joked about it [lethargy] as being pre-teen behaviour.” (P41, haematological cancer, Father).
In some cases, parents even stopped recognising the changes which could prolong the timespan before consulting their GP. Some changes were self-managed e.g. by giving massage or exemption of school sports as families made adjustments within their everyday routines and lives.
However, turns for the worse – persistence, worsening or accumulation of symptoms – affected their daily appraisals and were triggers for help-seeking. Changes presenting as acute-like bleedings often escalated the situation in the home, prompting parents to seek help immediately at an Emergency Department. When not acute, help-seeking was predominantly via the family GP.
In these ways, parents’ appraisal of bodily or behavioural changes in their children contributed to either an escalation of the situation prompting help-seeking or a de-escalation which could prolong the TTD. De-escalation could be due to either misinterpretations or normalization of changes.
Theme 2: parental knowledge and intuition
Appraisal was also affected by parents’ intuition and instinctive knowledge about their child. Some parents described how they could “sense” something was wrong. This sense could be indistinct:
“I can see that she doesn’t feel well, and I can’t say exactly why, but there’s something going on that isn’t the way it’s supposed to be …” (P6, solid tumour, Mother).
They characterised their children as “sad and moody”, “beside himself” and “… more vulnerable than usual”. In general, this parental intuition was a trigger for increased attention and played a significant role in the process of appraisal and in decisions about help-seeking.
In some cases, parents did not agree about their child’s wellbeing. Mothers described how they had repeated discussions with the fathers when they were certain something was wrong, while the father disagreed. Disagreements related to the severity of physical changes, a feeling or a sense. Differing parental appraisals then initiated a negotiation of urgency within the home and discussions about whether a GP should be consulted. In one case, a mother decided to take her daughter to the GP without telling the father. Nevertheless, differences in parents’ appraisal was not reported as a major barrier for help-seeking.
Theme 3: social relations
The social context played a significant role in terms of assigning levels of urgency, appraisal and escalation. Family and friends gave parents advice or shared their observations and/or experiences. This would often confirm parent’s concerns and encouraged them to take action e.g. by paying more attention to what had changed and/or by seeking help:
“Some girlfriends observed that he fell a lot. And I said that I also thought that was the case, but I wasn’t sure if it was just me …” (P45, brain tumour, Mother).
Knowing people with a medical background could be an advantage which families benefited from. They offered professional and tangible advices which empowered parents act e.g. by changing GPs, contacting a hospital directly or calling the same GP numerous times until the GP would become annoyed enough to make a referral. Parents also experienced how peripheral social relations gave advice when they heard about the child’s symptoms, some of whom possessed relevant experience or medical knowledge:
“I was talking to a neighbour … and mentioned that she had a slipped disc. She thought that sounded strange, but that her husband knew a lot about it because he was a neurosurgeon. He clearly recommended that she undergo an MR scan and get into the system to have someone look at her.” (P13, solid tumour, Father).
This neighbourly talk encouraged the family to seek help immediately. Likewise, adult acquaintances such as teachers would also share their observations. A mother described how a teacher had noticed their child was overcome by fatigue in school to an extent they had not recognized at home.
Also, interactions on social media influenced parents’ appraisals and decisions about next steps:
“I’m part of a Facebook group, where I upload videos and stuff and everyone in there was, like, you need to find someone who can help you because something’s wrong. That’s when I called the hospital …” (P43, brain tumour, Mother).
In this case, a mom used social media to join a community with parents of children with a severe chronic disease such as the one her son was diagnosed with. She was convinced it was a wrong diagnosis and the feedback from the parents confirmed her suspicions and triggered action.
Parental comments that fall under the theme of social relations clearly demonstrate that the advice of others could turn out to be very important in escalating a situation, prompting help-seeking. Advice was considered and influenced decisions no matter if it came from family members or peripheral acquaintances.
Factors related to primary care
Parents distinguished between their interactions with their GP and interactions with specialists. The former primarily concerned waiting time related to getting a diagnosis or a referral to specialists. The pathway to diagnosis often involved numerous consultations with GPs as their first point of contact but also opticians, chiropractors, physiotherapists, etc. were sometimes consulted before they obtained a diagnosis.
Theme 4: the general practitioner-child-parent interaction
GPs have the power to decide, based on his/her appraisals, whether a case should be escalated with a referral or a positive test moving a child closer to a possible diagnosis or de-escalated, if suspicions are not confirmed. In some cases, the changes and the child’s story were sufficient for a GP to refer or test after one or a few consultations. In other cases, families had multiple visits without any experience of progression. In a few cases frequent visits never triggered a test or referral.
Parents recounted how consultations generated many different experiences and feelings, and they recalled feeling relieved if their child was referred to specialists right away. Initially, parents often felt confident after consultations with their GP, having received plausible explanations of their child’s changes. They felt reassured that nothing serious was wrong and initially decided to “wait and see” if the symptoms would disappear. Diagnosing cancer was challenging for the GPs which initially was acknowledged by many parents. They described how they felt their GP applied a process of ‘elimination’ in the diagnostic process.
The advice of GPs was meaningful and played a significant role in parents’ appraisals in their everyday lives. When a GP confirmed or interpreted the changes as normal or non-severe, parents felt reassured and their worries decreased. They returned to a process of re-appraisal in their everyday life before consulting a GP again. This could continue in a loop moving forwards and backwards between home and GP. Some parents postponed consultations because they were afraid to “look like a fool” when returning multiple times to their GP.
But the persistence or worsening of symptoms increased their concern. As time went by with an increasing number of consultations without any experience of progress, parents felt disappointed, frustrated and rejected by their GP. One source of frustration was disagreements with their GP. But also, an experience of insufficient involvement, a feeling of not being listened to and having their knowledge and experiences set aside. Although convinced something was wrong, parents described how being rejected by their GP caused them to doubt their own observations and appraisals:
“They [the GPs] questioned the validity of my observations as a mother and that made me insanely frustrated and angry. I left my GP so many times doubting my own observations.” (P46, brain tumour, Mother).
Although disagreements occurred, which could prolong the TTD, decisions could be negotiated which some of the parents took advantage of. They used various strategies in their interactions with the HCS, with the aim of speeding up the process increasingly demanding tests, diagnosis and effective treatment:
“I had to tell my husband that it was his turn now; he can look quite scary. Now you have to be one of those parents who is supremely annoying, and we have to put our foot down to make them take that blood test.” (P1, haematological cancer, Mother).
A father used a similar strategy by refusing to leave the room before the GP had taken a blood sample. He escalated the situation and got the test.
Another strategy was used by parents who decided to go their own way in the HCS when the standard care pathways did not meet their needs. This could e.g. be by talking to different GPs or other types of HCPs to get second opinions or navigating around their GP by going directly to a hospital to find out how they could get an appointment as quickly as possible. They benefited from their ability to act strategically in their interactions with the HCS.
In some cases, a good relation to the GP also appeared to influence the pathway. Some parents felt their relation to the GP could speed up the process. A couple of parents described how they insisted to talk to one specific GP. However, in some cases it was consultations with different GPs which were believed to trigger a referral to specialists.
When parents and GPs interact, a negotiation about urgency and action takes places. It influences the triage that continuously takes place in GP consultations which can lead to either de-escalation (families return to re-appraisal in everyday life), which postpones the time to diagnosis, or to escalation, with further examinations and/or referral to specialists where the next level of specialist triage takes place.
Factors related to secondary care
Theme 5: the specialist-child-parent interaction
At the specialist level, waiting time was related to getting a final diagnosis and starting treatment. When children made it to the specialist level, the situation often escalated quickly with targeted tests to identify the precise cancer type and treatment often initiated within days or even hours. Finally, being in the hands of specialists made the families feel safe with an experience of momentary relief when they obtained the diagnosis although followed by feelings of shock. Relief was especially clear for those families who had lived in uncertainty for months. The clinical specialists who were familiar with most of the cancer types were described with a high degree of respect and revere. Still, some parents insisted on talking to a specific specialist.
Even specialists could be challenged, and two couples experienced their children receiving shifting diagnoses from benign to malign. This illustrates how appraisals of symptoms and the level of urgency and triage can also be difficult at the specialist level. At the time of the interview, some children still only had a temporary diagnosis, however, highlighting the complexities of obtaining a specific diagnosis for some in cancer care.
The pathway to diagnosis explained by diagnostic triage
In often-busy everyday lives filled with jobs, hobbies, family obligations etc. parents continuously appraise the well-being of their children. In cases of concern about their child, parents can choose to escalate the situation and act based on their appraisal. The escalations that ultimately prompt help-seeking were shown to be influenced by multiple factors related to themes of the nature of the bodily and behavioural changes, parental intuition and social relations. Likewise, situations were also de-escalated and help-seeking postponed possibly prolonging the TTD. We designate this dynamic continual process of appraisal/re-appraisal and escalation/de-escalation ‘everyday triage’.
Diagnostic triage is a sequential model (Fig. 1) covering three different forms of triage that take place from the moment a parent/child notices bodily or behavioural changes and continues until a diagnosis has been received, each step encompassing different levels of power and knowledge. Triage involves assigning levels of urgency, in our case, not so much in connection with treatment but rather in diagnostic pathways. Focusing on diagnostic triage sets the everyday life of families at the centre of the analysis. Parents make decisions daily on behalf of their child through a form of everyday triage. They are vigilant about the wellbeing of their child, making appraisals and judgements about any change(s) that might indicate their child should stay home from day care or school, or that an appointment with an GP or another HCP should be made. When appointments are made, the types of assessment that characterise diagnostic triage move into the HCS, where we distinguish between general triage (GP/Emergency Department) in primary care and specialist triage (Hospital) in secondary care.
Clearly, multiple factors affect the pathway to diagnosis and, consequently, what we term ‘diagnostic triage’. In the ways we have shown in our analysis, the processes of appraisal/re-appraisal, help-seeking, negotiation and escalation/de-escalation were iterated continuously until a diagnosis was obtained.