Table 5.

Examples of narratives of patients with NDPH

Theme: Medical care
Subtheme: Referrals and lacking continuity of care
Groups of common meaning	Narratives
19 referral among medical specialists.	Referrals among doctors: ‘Now I am with the neurologist. But everything began with the orthopedic surgeon, because I had something in my back and I was thinking of having an operation. Beforehand, he sent me to the physiatrist to try and strengthen my back. But, then the physiatrist sent me to the neurosurgeon because she saw something strange in my x-ray. After the NMR, the neurosurgeon decided to send me to the neurologist.’(P16). No continuity of care: ‘I went to another center and a different doctor saw me. It’s like starting all over again, they ask you the same questions again because they don’t know you. They would give me a treatment and at the next appointment it was another person, and back to the beginning. Thus, until the next referral to another physician.’ (P17)
20 referral criteria	Need for referral: ‘After almost a year of treatments, and trying everything, the doctor told me that neurologically he wasn’t achieving anything and that he would have to continue by consulting other specialists, because he didn’t know what to do.’ (P3), ‘I am referred when they don’t know what else to do. That’s what they all do.’(P12) Referral to a neurologist?: ‘The doctor has tried a thousand things, to finally end up saying that he didn’t know what I had and sending me to the neurologist for a headache, shouldn’t that be the first option?’(P17)
21 referral to a psychiatrist	Mental cause: ‘He sent me to the psychiatrist, because he didn’t see anything in the tests… So it had to be mental. But the psychiatrist didn’t know what to do.’(P5), ‘I was derived because there wasn’t a doctor to certify that I had an illness with a proper name. So, because that didn’t exist because nothing was found in the tests, they assumed that it was something mental of my own, something I had to resolve myself.’(P1) The pain and the patient’s way of being: ‘Now it turns out that I am the problem, I am the cause of this… as if I like having a headache…’(P1) No reasons to go to the psychiatrist: ‘… I admit that I felt somewhat angry when they told me that it was something psychiatric. How can that be? If it feels very real and physical’(P1), ‘I went to the psychiatrist, we were 10 or 15 people, completely different. It had nothing to do with my problem.’(P17)
Subtheme: Building the doctor–patient relationship
22 The basis of the doctor–patient relationship	The reason for the relation with the doctor: ‘The first thing that I ask him is to take away the pain, for it to be effective, that’s why I come…’(P1), ‘They must listen, but above all, they must identify the problem and resolve it.’P16). Support from the doctor ‘What I sought was the kind of doctor that made things click for me, someone who was able to show me another way of seeing things and managing it.’ (P1)
23 Characteristics of the doctor–patient relationship	Characteristics of the doctor-patient relationship: ‘Sincerity is vital, although there are no solutions. For the doctor to be able to tell me that there are no alternatives, but to continue searching.’(P3), ‘It provides me with peace of mind, using all the time I need to understand it, not to be in a rush.’(P17),‘For them to call you by your name is a small detail which makes a difference.’(P17). Characteristics of an approachable and friendly doctor: ‘The doctor must be close, must be interested in your case. You can tell when you see that he or she is concerned, when no explanation is found and still they find it’(P2), ‘I only ask the doctors to not forget about me.’(P5), ‘It’s essential for the same doctor to do a follow-up, that makes you trust them more. When you have this kind of pain, this is very important.’(P12).
24 Things a doctor should avoid	Giving up too soon: ‘You realize that he has already given up. He doesn’t say not to come, but they tell you that they can’t guarantee that they can help. They don’t know what else to try and so they send you to another doctor. I feel like they have given up, I am disappointed.’(P18), ‘They are the ones who know and if they don’t know what to do, what am I supposed to do? It’s as if they abandon you, they leave you alone with your pain.’ (P19). Not believing the patient: ‘It feels like they don’t take you seriously with your pain, because it’s something that you can’t see. To say that you have pain is like saying that you don’t have anything.’(P12). ‘They don’t believe that such a strong pain exists for so long and that you don’t take anything. If you don’t take any medicine, they think that you don’t have such a strong pain.’ (P9).
25 Consequences of a poor doctor–patient relationship	Repeating ineffective medication: ‘They send you six treatments, half of which are repeated, medication that hasn’t been helpful for anything, and all because they don’t listen to you.’(P17). The patient is a number: ‘You realize that they aren’t taking any notice of you, because you stay quiet in the middle of the conversation and they don’t even realize. We are a number after all, and when you leave, another number comes in, and they don’t even recognize a person’s face or the name.’(P17). No way out: ‘If the doctor who you depend on isn’t interested, how am I going to control all of this, he doesn’t even realize that he is my only hope and my only way out of this. If he isn’t interested, where should I turn for help…? (P17)

Theme: medical care.

NDPH, new daily persistent headache.