Appraisal Interval
1. Self-Appraisal
The first theme identified was self-appraisal. All symptomatic participants engaged in a period of symptom self-appraisal, which determined whether or not they consulted a GP. Self-appraisal typically began upon first symptom recognition, whereby the severity of that symptom was appraised and perceived either as ‘normal’ (i.e., similar to a previously experienced symptom) or abnormal (i.e., not previously experienced). If symptoms were normalised, participants typically felt unalarmed, and a GP was less likely to be consulted. One participant normalised their tiredness due to a vegetarian diet, and decided that a GP was not warranted:
But I’ve been vegetarian for about 15 years, and I’ve always had a naturally low blood iron level. (Male, 65, stage 3)
Others attributed COBH to previous experiences of stomach ulcers or psychological conditions:
I have always had a funny guts for, you know years, and years and years…before that I’d actually had a stomach ulcer. So I thought, oh probably something like that. (Male, 43, stage 2).
I brushed my diarrhoea off to a large extent, because I knew how my stomach reacts to, tension and stress. (Female, 69, stage 4)
A GP was also not consulted if a symptom was perceived as an isolated case (e.g., just one bout of bleeding) or if participants attributed symptoms to a benign health issue. For example, if symptoms could be explained by factors such as recent dietary change, changes in exercise routine, stress, lack of fitness, diverticulitis, haemorrhoids, stomach ulcers or emotional tension, a GP was often not consulted immediately. One participant attributed food intake as being responsible for the blood in her stool:
Often, I used to, when I wipe my behind, I often used to look at it and think, mmm- is there a sign of red in that? But then it was persimmons season, and it was summer we‘d been eating a lot of salads. Is it the beetroot, is it the tomatoes, is it the persimmons? I always found another excuse. (Female, 69, stage 4)
In contrast, when participants perceived their symptoms as abnormal (e.g., excessive bleeding from the bowel), a GP was more likely to be consulted. One participant assessed bleeding as a stark contrast to their usual bowel habits, which facilitated immediate help-seeking:
It was just blood, everywhere, and the water just turned bright red … So I went up to the hospital. The emergency department. (Male, 67, stage 4)
Many of the Māori participants included the impact of their symptoms on their sociocultural environment in their self-appraisal. In particular, symptoms were perceived as less concerning if they could stay private, but once the symptoms became obvious to others around them, they decided to seek advice.
I kind of put my head down on my desk and my work colleague he walked past and he says, hey you! You better get to the doctors. You look terrible he says. You look like crap! I said thanks for that! (Female, 69, stage 3)
Sometimes when I was at work, I couldn’t make it [to the toilet] and um, you sort of um, dirty underwear sort of thing. So changed my underwear every, twice a day, as it got really embarrassing you know? You are too frightened to sit down and have a smoko with the rest of the mates. And you know, they whether they could smell you, I don’t know, but- (Male, 60, stage 3)
For all the participants, symptoms such as abdominal pain, unexplained weight loss and nausea were perceived as abnormal, and so facilitated a faster GP consultation than other symptoms.
2. Self-Management
Self-management was a second theme identified in the appraisal interval. Once symptoms had been appraised, participants employed various self-management techniques. Self-management was usually informed by the type of symptom experienced, the participant’s perception of their own level of health literacy and their previous experience of self-managing symptoms. Self-management ranged from over the counter medication (e.g., for symptoms such as diarrhoea, constipation, and nausea), to dietary or exercise routine changes, to simply waiting for psychological stress to abate:
I have some diarrhoea tablets to stop the diarrhoea. (Male, 60, stage 2)
It was bad diarrhoea. But, um, with the excitement of booking all our holiday and everything I just thought ‘oh its excitement, it will disappear once all that’s done’. (Female, 69, stage 4).
Self-management and self-appraisal were closely related behaviours. While self-managing, self-appraisal was commonly revisited as participants monitored the progress of the self-management strategies they were employing. Self-management, if successful, resulted in delayed help-seeking if participants felt symptoms had subsided to a more manageable level and therefore did not require professional medical help.
Help- Seeking Interval
3. Symptoms Worsen
During the help-seeking interval, the worsening of symptoms was an example of how severe symptoms had to get before a GP was consulted, so was an important facilitator to help-seeking. Self-management was often a temporary strategy, as participants not only reported the return of symptoms, but also usually experienced a pronounced increase in severity whereby symptoms became hard to manage (e.g., if medications were no longer being effective, or dietary changes no longer relieved bowel habits or pain):
My symptoms weren’t improving in fact I think…just made it worse, you know, so I noticed a lot more. (Male, 65, stage 3)
For some participants, it was an increase in the number of additional symptoms that warranted cause for concern and facilitated a GP consultation. One participant reported beginning with manageable symptoms that did not cause alarm, such as loss of appetite, however, as time progressed, additional symptoms presented and became unmanageable, prompting a GP consultation:
In November, a year previously, I, um started having, weight loss and loss of appetite. [Then a while later] either constipation or diarrhoea [so I] went to my local doctor. (Female, 51, stage 4)
For another participant, the smell associated with bloody stools prompted him to see his GP:
The smell is the one that probably sticks out the most because it, it just, just lingers aye. It just sits on your tongue like ‘ugggh’. (Male, 49, stage 4)
Some participants also recognised that symptoms had become unmanageable in their daily routine, as indicated by a change in their physical ability to perform usual household tasks, jobs or manage holidays. One participant reported a lack of energy for any non-work areas of life and another participant outlined the disruption a lack of control over bowel movements caused to a working holiday:
My life consisted of going to work and coming home and getting my nightie on and going straight to bed. Every night. (Female, 51, stage 4)
While I was over there, the pressures like going to the toilet, um was, chronic, and sometimes I’d go, and, and I’d go back to class and then, you know, 15 minutes later I think ‘Oh god I gotta go again!’ (Male, 63, stage 3)
One participant reported that he was managing his symptoms initially, however once symptoms worsened, he was unable to complete his work efficiently and had to be close to a toilet throughout the day:
I was going to the toilet around about 10 times a day then, and then um, it got worse. I was going 30 / 40 times a day … It was a nuisance. Like, I’d be up on the bloody roof [working, and think] Oh sh**! Down the ladder, into the portaloo – you know? (Male, 60, stage 2)
In this interval the Māori participants were more likely to consider the impact of their symptoms in relation to their families. This included overcoming their concerns about needing to accept help:
You know in the mirror and you’re like that’s me, because I want to feel positive aye and I want to have pride aye. You know. I have a two year old daughter that um, man I want her to look up to me like, yeah ‘churr my dad’ she would like that. (Male, 50, stage 3)
I don’t want to wait until later and write down, and go through all those emotions. Um, when I am meant to be strong for my children … I want to be there for that. (Male, 49, stage 4)
Disruption to work and inability to manage a daily routine were important facilitators to seeking help for both Māori and non-Māori participants, and was an indicator that self-management options were exhausted/no longer effective and that their health was in a more serious state than initially thought.
Diagnostic Interval
4. Other diagnoses
A prominent theme identified in the diagnostic interval was the participants’ perception that their symptoms had been misdiagnosed, either once or multiple times. Common misdiagnoses included haemorrhoids, menopause, diverticulitis, vitamin B12 deficiency, low iron, diabetes, stress, anxiety, irritable bowel syndrome, kidney stones and food poisoning, with GPs typically prescribing medication for these.
Symptoms probably were, around about 10 months prior, um, to finally being diagnosed, and I’d been to my GP quite a few times of that 10 months period with my concerns, and his first comment was, you know ‘it’s probably just piles, you’ve probably just got piles.’ And I said ‘look, I’ve had them before, I know what pile bleeding is’ … I said, ‘This is quite a lot of blood’. (Female, 42, stage 3)
I went back to the doctor and I said I’m a little bit concerned you know I’ve got this weight loss and I can’t understand it. I’m still eating. Although I don’t have a great appetite. But um, I’m noticing there’s blood in my stools. And he said to me ‘oh, do you think you might have piles?’ (Female, 51, stage 4)
He [doctor] just thought I had irritable bowel syndrome and gave me medication for that which actually made me sick. (Female, 74, stage 3)
Other diagnoses were reported more often by participants who experienced linger diagnostic intervals (excluding those who were diagnosed incidentally) and therefore was an important barrier to prompt diagnosis.
5. Patient appraisal of GP
Participants typically appraised their GPs performance throughout the diagnostic interval. If they perceived a high level of technical competence (i.e., medical knowledge, performing a physical examination, being proactive, following up on referrals) a positive diagnostic experience was reported, but if participants perceived a poor level of technical competence, then they were more likely to report a negative diagnostic experience.
Participants universally reported a positive experience if their GP investigated symptoms proactively, leading to a prompt diagnosis. For example, some participants praised GPs for having a high level of CRC knowledge (recognising symptoms) and taking the initiative in providing healthcare (referring for colonoscopies / blood tests and calling participants for routine check-ups). One person perceived a high level of technical competence from their GP:
I did go to my GP. And um, she did some blood tests and I was extra low in iron. So she gave me some iron. Um which made me feel a whole lot better. But in, in between times, she had already written to have a colonoscopy for me to have at [hospital]. Yeah so it’s, she obviously suspected something wasn’t quite right, you know, for losing all that iron out of my body so, yeah. So she then, got things cracking and she really did. (Female, 75, stage 3)
While the perception of a technically competent GP was associated with prompt diagnosis, a perceived lack of technical competence was an important barrier to diagnosis. For example, a lack of technical competence was perceived if GPs failed to perform appropriate medical examinations before offering a diagnosis. Several participants reported a lack of scans or rectal examinations:
And I was sent home because she said I had constipation…no scan, no nothing. (Female, 86, stage 3)
He seemed to think I had piles, although he didn’t check. He never once, he never once examined me at all. Which I thought was really odd. (Female, 51, stage 4)
But, I- in some ways, I think my doctor did fail, yeah, by lack of checking...he could have checked for haemorrhoids. (Female, 86, stage 4)
In addition to the perception of technical competence, participants also assessed their GPs level of interpersonal competence based on their experiences of feeling respected, informed and cared about. Participants who reported having an overall positive diagnostic experience also perceived their GP to have a high level of interpersonal competence. Interestingly, interpersonal competence could often override perceptions about technical competence and a longer interval to diagnosis, and could still lead to a positive diagnostic experience:
And in the interim again [waiting for non-urgent colonoscopy] we tried to- still tried to identify triggers and we tried to get another anti-nausea thing, that type of thing. Yeah so the on-going care, was, was happening, but not effective…So then, J*** who’s my GP, said okay well let’s try some, we will do some more blood tests etc and this time they did, an iron test…I’ve got the same GP I’ve been seeing for years, yeah, very, very good. (Male, 69, stage unknown)
He [doctor] said ‘you are under my care’. And that made a big difference, because it showed that somebody actually did care. I wasn’t just a number. (Female, 69, stage 4)
In contrast, a failure to demonstrate interpersonal competence generated a negative diagnostic experience:
He just didn’t really care, wasn’t interested and just, look-looked me up and down and just kept typing on his, on the computer. (Female, 42, stage 3)
For one person, despite having received five earlier non-cancer diagnoses, experiencing a longer interval to diagnosis and cancer progression, it was the perceived lack of interpersonal competence that had the most negative impact:
I stood at the reception and I, was actually treated quite disrespectfully, through this whole journey. Even by the receptionist because I think, I think they thought I was a hypochondriac … [So I said tell the doctor] I won’t be in for my B12 shot next week because I, I’m, I don’t have B12 deficiency. I have cancer. And I’ve never heard from them. Not an apology. Not a letter. Nope, nothing … and I just feel sorry for anybody else that’s been treated by him because we were just. We were just, I, you know I, I really feel that. Um, that particular company, just, get you in and out. Here’s some drugs, bugger off. We really don’t care. You know? And so all through this, I actually started seeing, I went and got counselling. (Female, 51, stage 4)
While many of the participants described GP delays as frustrating or worrying, their more emotional descriptions of poor care tended to include incidences where they felt dismissed, ignored or disrespected.