Phase 1: Initial interviews
We interviewed 15 participants (10 female) age range 29 to 69 years (median 47 years): two had chronic tension type headache, six chronic migraine, and seven probable chronic migraine. Additionally, six of the 15 had medication overuse headache. Participants lived across a range of localities in the English Midlands: three rural, eight in towns and four in a city (Table 1).
Medication used by participants was, on the whole trial and error from over the counter (OTC) medicines at the outset. If these didn’t work then they would seek help from their GP for suggestions of other medications to try. The OTC medications used at the time of interview ranged from paracetamol preparations/ ibuprofen/, and opioid analgesics most of which helped but didn’t abolish the headaches. A few were on preventatives such as pizotifen, beta blockers or amitriptyline prescribed by the GP or a neurologist. Triptans were also prescribed which were useful for some. Others used medication prescribed for other conditions for their headaches such a naproxen, propranolol, or codeine. Around half described having tried preventatives in the past which were mostly unsuccessful.
Our participants recounted often long complicated medical/ personal/ headache histories. Most talked about experiencing different headaches, dichotomising them as ‘normal’/ ‘not severe’ or ‘migraine’/ ‘severe’ headaches. At onset, sometimes they were aware immediately which headache type it was but sometimes they had to wait to see how it progressed before identifying the headache type, gauging its intensity or its nature. The presentation and the context of the headache were important considerations as to what they would then do in terms of taking medication, altering plans, considering how it would impact others. Sometimes they had to leave their current environment because of the headache. Decisions would depend on whether they were at work, home or out somewhere and whether they felt they could manage the headache where they were. Participants described an often-continual search for triggers or an acceptance that there were no identifiable triggers. They described how the experience of headaches impacts on their lives including the frustration at people not understanding how it affects them and how fed up they were with having headaches. Table 2, provides illustrative quotes of their experiences of chronic headache.
Phase 2: Main Study interviews
Comparison across all time timepoints (developing and testing the categorisations from the pen portraits)
A total of 26 participants were interviewed, from a variety of locations in the Midlands or London. (Table 3) These 26 participants make up the two groups below.
Fourteen (median age group 50s, range 20s – 70s; 9 females) were interviewed three times (baseline, 4 and 12-months; total 42 interviews). Participants were randomly assigned to control (n = 7) and group intervention (n = 7) arms of the trial. However, one participant did not engage with the intervention (did not attend DNA) and was classified as ‘control group’. These interviews informed the development of pen portraits and proposed impact categories.
Twelve participants were interviewed twice (total 24 interviews; median age group 40s-50s 11 females). Four were interviewed at baseline and four months, three of these were in the control arm, with one in the intervention arm (but they too did not attend any intervention elements DNA). Eight were interviewed at 4 and 12-months (age etc.; 7 female); all were in the intervention arm. These interviews were used to test the impact categorisations.
The developed categorisations from the pen portraits (From the dataset of the 14 triple interviews).
Figure 1 above shows the four categories developed from the longitudinal interview data. It was very clear that as time goes by people often change their categories and sometimes exhibit characteristics of some of the other categories at the same time hence the diagrammatic overlap and close relationship between all of the categories.
Concept model of the relationship between categories of headache experience
To present our findings we have written short summaries of the pen portraits for each participant and presented these as a table of how they were categorised at each time point.
Tables 4 and 5 below show summary pen portraits from each of the interviewees who gave interviews over the three timepoints (Baseline, four and twelve months). Each participant at each timepoint is coded with one of the four categories. Examples of actual pen portraits, illustrating each of the four categories, are provided in supplementary materials. (see supplementary material, pages 5–21).
Table 4 shows interviewees who were not exposed to the CHESS intervention. At baseline four interviewees were categorised as their headaches ruled their lives, two whose headaches controlled – not ruling their lives, two were not letting headaches rule their lives and none were categorised as Headaches out of control. Six of the eight interviewees changed category at least once over the twelve-month period.
Table 5 shows the interviewees who were in the CHESS intervention arm. At baseline three interviewees were categorised as not letting headaches rule their lives, two where their headaches ruled their lives, one where they were catergorised as headache out of contol and none were categorised as headaches controlled – not ruling their lives. Four of the six interviewees changed category at least once over the twelve-month period.
Relationship between categories
Whilst a predominate category is defined for each interviewee at each timepoint it was very clear that many exhibited elements from others demonstrating the complex nature of living with chronic headache. For example, interviewee #08 (Table 5) who is not letting headache rule their life but also notes that at times they put things off because of it. Whichever the predominant category we decide on there are elements of another category. Some people are at the boundary of a category, so #09 at Timepoint 2 is categorised as not letting headaches rule their life but bordering on their headaches being controlled which by Timepoint 3 they are.
Those sitting in the upper left quadrant of the conceptual model are more likely to be managing with the strategies they have, with headaches impacting little on their day-to-day functioning. Those sitting in the lower right quadrant are experiencing headache effects which either limit or dominate what they can and can’t do.
Validating the categories (interviews at two points in time)
Table 6 Provides summaries of the pen portraits from the twelve pairs of interviews. We were able to categorise participants at each time point using the proposed categories, and as before, some participants expressed elements of another but less dominant category. Of the four who gave interviews at baseline and four months two, at baseline, were categorised as their headaches were ruling their lives and two as their headaches were out of control and something needed to change. At four months all were no better and indeed all were categorised as their headaches were out of control and something needed to change. Of the eight who gave interviews at four and twelve months: three, at four months, were categorised as not letting their headache rule their lives, three were categorised as their headaches were ruling their lives and two were categorised as having headaches that were controlled. At twelve months all but two of the eight participants changed categories, with two re-categorised as ‘headaches out of control’ and four as their ‘headaches are now controlled’. The final two are categorised as, not letting headache rule their life and headaches not ruling life.
All four categories could be influenced by many external contextual factors e.g. if they were retired, if they were able to work around their headaches, where they were when a headache started. Where one person had to battle through another had the flexibility to take time out for it to ‘work through’ with or without medication. Others kept going even with severe headaches that others wouldn’t have been willing or able to do.
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