Table 3.
Top meaningful concepts reported by survivors and caregivers
| Survivors | Count (%) | Caregivers | Count (%) |
| Pain interference* | |||
| Hurt a lot | 12 (66) | Hurt a lot | 12 (92) |
| Hard to do sports/exercise | 9 (50) | Pain so bad had to take medicine | 7 (54) |
| Hard to pay attention | 9 (50) | So much pain had to stop what he/she was doing | 7 (54) |
| So much pain had to stop what he/she was doing | 8 (44) | Felt grumpy | 6 (46) |
| Trouble moving around | 8 (44) | Trouble moving around | 6 (46) |
| Fatigue* | |||
| Needed to sleep during the day | 12 (57) | Felt tired | 10 (77) |
| Trouble doing schoolwork | 12 (57) | Felt irritable† | 8 (62) |
| Felt tired | 11 (52) | Needed to sleep during the day | 8 (62) |
| Hard to pay attention | 10 (48) | Did not have much energy | 7 (54) |
| Did not have much energy | 9 (43) | Body moves slower† | 6 (46) |
| Felt irritable† | 9 (43) | ||
| Psychological stress* | |||
| Felt worried | 9 (47) | Felt distressed | 9 (64) |
| Felt distressed | 7 (37) | Felt stressed | 9 (64) |
| Felt stressed | 7 (37) | Felt worried | 8 (57) |
| Physical experience of stress† | 6 (32) | Felt under pressure | 7 (50) |
| Felt panicky | 5 (26) | Felt frustrated | 6 (43) |
| Stigma*‡ | |||
| Others my age made fun of me | 7 (50) | Others my age bullied me | 6 (75) |
| Felt different from others my age | 6 (43) | Others my age made fun of me | 3 (38) |
| Unhappy how condition affected appearance | 6 (43) | Others my age seemed uncomfortable | 3 (38) |
| Others treated me differently† | 5 (36) | Others treated me differently† | 3 (38) |
| Felt left out of things | 4 (29) | ||
| Others my age bullied me | 4 (29) | ||
| Meaning and purpose* | |||
| Purpose in life | 14 (70) | Purpose in life | 11 (69) |
| Meaning in life | 13 (65) | Things I want to do in life | 11 (69) |
| Have goals for myself | 12 (60) | Expect to have family in the future | 9 (56) |
| Expect to have job in the future | 9 (45) | Expect to have job in the future | 9 (56) |
| Want to help others† | 9 (45) | Meaning in life | 9 (56) |
*See online supplementary figures 1–5 for a full list of meaningful concepts for pain interference (33 concepts), fatigue (36 concepts), stress (37 concepts), stigma (17 concepts), and meaning and purpose (39 concepts).
†New concept generated from semistructured interviews.
‡Only top 4 concepts listed from caregivers because the fifth concept was a tie between three concepts.