Table 6.
Qualitative Codes for Reasons Participants Considered Specific Amounts of Change Meaningful
| Parent | Child | Grandchild |
|---|---|---|
| Amount | Some change (292); “Any reduction would be positive” Large amount (191); “A change of 2 could be within normal ups and downs. A change of 3 would make me worry” No distress or pain (221); “If the treatment is successful, I should be experiencing minimal to no pain” Set level including some is normal or to be expected (310); “I wouldn’t expect it to be 0 because we all get distressed but as long as it’s manageable” |
|
| Context, outside pain or distress | Activities, outside events (86); “I'm quite anxious about my job and family life at the minute” Medical diagnosis (70); “I have MS [multiple sclerosis] so my pain threshold varies” |
|
| Medical treatment | Specific treatment (74); “At this level I would require Advil or possibly something stronger depending on how long the pain lasted” Want treatment, nonspecific (150); “I need treatment at this level” Already taking treatment (36); “Tablets are working so it’s great” |
|
| Don't want treatment | Manage on own (120); “I can manage the pain on my own” Treatment drawbacks (30); “Medications make me sick, so it needs to be a lot of distress before I will resort to it” Treatments don't work (38); “I take ibuprofen and paracetamol at this level, but they don’t really help as I can’t sleep” Treatments don't address root cause (13); “Generally my distress is sourced in something reasonable so cannot be completely removed, but a 4 would mean it can be managed without wasteful amounts of distress” |
|
| Context, pain- or distress-specific | History of pain or distress (previous experience) (111); “I have a chronic low-level pain at around a 3 level, so back to this base level [for me]” Type or location of pain (81); “I suffer with back pain” Pain or distress is variable (82); “My distress is up and down” Pain or distress is stable (54); “Pain is fairly consistent on a daily basis” Frequency of pain or distress (81); “Lower score represents less frequent pain” Disposition/tolerance (63); “Have a low pain tolerance” At 0 or 10 (106); “I'm not experiencing pain right now” Noticeable (93); “Noticeable enough to be problematic” Interference/function (235); “That’s the level at which the pain becomes easily manageable” |
|
| Confusion | Don't understand (115); “I was unsure what qualifies as ‘high,’ so 4 is a good safe number to pick because it's definitely on the lesser side” Didn't understand the reasons question (29); “Climate change” Contradictory reasons (7); “I feel the pain I experience is not bad enough to be treated, but is also something that should be treated” Contradicts numerical rating scale (47); “I am currently not experiencing pain” [marked 3 for numerical rating scale] Didn't understand hypothetical (142); “My pain is getting better” [in response to the question about worsening pain] Interpreted higher as better (instead of worse) (73); “It would improve” [in response to distress treatment working question, participant marked 8 but marked 4 for wanting treatment for distress] Interpreted as change not level (3); “That's the same rate of the previous question. [Because] it's a balance... 5 for getting worse, 5 for getting better” Didn't connect to correct numerical rating scale (146); “4 is considerably greater than 8” [in response to the question about distress treatment success, but participant marked 10 for wanting treatment and 8 for current distress] |
Parentheses indicate number of participants reporting that code. Italicized phrases are example quotes with explanations in square brackets.