|
Mother | Child | Sources of pain (using participant descriptors) | Frequency and regularity of child’s pain | Intensity of worst pain (0–10 scale) & nature of worst pains (as scored by participant) | Pain plan | Medication given by participants to manage pain | Other (nonpharmacological) actions taken | Level of challenge, confidence, expectation in relation to managing pain |
|
M1 | Boy, 11 yrs, birth asphyxia, severe epilepsy, stomach ulcers | (i) Stomach migraine (ii) Headache (iii) Abdominal pain (iv) Hip pain (v) Pain of unknown origin | (i) 8 out of 8 weeks (ii) Daily | (i) Intensity: 8 (ii) Nature: pain causing drawing up of knees | No | Acetaminophen | (i) Rubbing back and legs (ii) Positioning (iii) New bed and wheelchair | (i) Challenge: struggling with ongoing pain (ii) Confidence:confidence is low with unknown cause of pain and uncertain if actions are working(iii) Expectation: not stated |
|
M2 | Girl, 11 yrs, severe neurological impairment, epilepsy, postscoliosis surgery | Nerve pain following scoliosis surgery | (i) 8 out of 8 weeks (ii) Daily | (i) Intensity: 9 (ii) Nature: nerve pain and spasms in back, left leg, and arm | No | (i) Acetaminophen (ii) Ibuprofen (iii) Baclofen (iv) Gabapentin (v) Midazolam (rescue medicine) | (i) Positioning (ii) Bath (iii) Massage | (i) Challenge: an ongoing struggle; pain is now a bigger issue than all other symptoms (ii) Confidence: informed and confident she will do her best but lacking confidence in professionals accepting responsibility for pain management (iii) Expectation: it is up to her to fight for better pain management; hope that current cycle of pain will be resolved |
|
M3 | Boy, 7 yrs severe neurological impairment, feeding difficulty, epilepsy, cardiac problems | (i) Stomach spasms (with night feeds) (ii) Hip pain (dislocated) (iii) Dystonia (iv) Muscle pain (from foot splints) | (i) 8 out of 8 weeks (ii) Every night | (i) Intensity: 10–12 (parent knowingly stated that pain could be 12 out of 10, as it “went off the scale”) (ii) Nature: “unrelenting” pain (tube feeding); acute pain on movement (hips) | No | (i) Chloral hydrate (ii) Fentanyl (patches) | (i) Settling him to bed (from chair) (ii) Winding [burping] him before bed and settling | (i) Challenge: struggling with ongoing pain and the impact this has on her and her family (ii) Confidence: confident in herself and her ability to assess her son and manage him to the best of her ability (iii) Expectation: he has always had pain and he will always be in pain |
|
M4 | Boy, 10 yrs, severe brain damage, quadriplegia, asthma, sleep apnoea, double hip reconstruction | (i) Stomach cramps/indigestion (ii) Gastritis (iii) Constipation (iv) Hip pain (v) Toothache (vi) Helicobacter (stomach pains) | (i) 8 out of 8 weeks (ii) Most days
| (i) Intensity: 6 (ii) Nature: spasm type pains associated with stomach and bowels, nagging pain from hips | No | (i) Acetaminophen (ii) Botulinum toxin Type A (iii) Gabapentin (iv) Enemas (v) Probiotics | (i) Diet (lactose-free) (ii) Positioning (iii) Startling him to “break cycle of pain” | (i) Challenge: managing reasonably well although pain is ongoing (ii) Confidence: confident, well organised, and supported by carers; able to stand ground with professionals and make things happen (iii) Expectation: he will always have some pain but that it will be able to be managed reasonably well |
|
M5 | Girl, 9 yrs, severe brain damage, epilepsy, cerebral palsy, scoliosis, sleep apnoea, tracheostomy | (i) Muscle spasms (ii) Stomach cramps (iii) Constipation (iv) Coughing | (i) Not available (ii) Regularity (not available)
| (i) Intensity: not available (ii) Nature: spasms (muscles) and gripe | No | (i) Acetaminophen (ii) Baclofen | (i) Positioning (ii) Distraction (talking, stories) (iii) Bath | (i) Challenge: managing medications to ensure child has “good nights” (ii) Confidence: confident that she can work out what is causing child’s pain (iii) Expectation: not specifically stated |
|
M6 | Girl, 9 yrs, cerebral palsy, scoliosis, dislocated hip | (i) Hip (ii) Spine (iii) Reflux (iv) Fractures | (i) 6 out of 8 weeks (ii) At least once a day; often continuous | (i) Intensity: 4–6 (ii) Nature: positional, broken leg, breathing, and chest | Yes | (i) Acetaminophen (ii) Morphine | Being in comfortable bed | (i) Challenge: child “keeps fracturing,” ongoing challenge (ii) Confidence: able to juggle medicine up and down as needed due to experience (iii) Expectation: need to be constantly alert to likelihood of child being in pain |
|
M7 | Boy, 7 yrs, meningitis, hydrocephalus, cerebral palsy, epilepsy, Crohn’s disease | Abdominal pain | (i) 7 out of 8 weeks (ii) Ongoing and episodic | (i) Intensity: 8–10 (ii) Nature: stomach spasms | No | (i) Acetaminophen (ii) Morphine (oral, about once a week) | (i) Hugs and cuddles (ii) Rocking | (i) Challenge: Crohn’s disease has “complicated the picture,” a lot of potential causes of pain (ii) Confidence: confident she can assess child’s pain (iii) Expectation: things are/will remain complicated |
|
M8 | Girl, 14 yrs, cerebral palsy, epilepsy, bilateral dislocated hips | (i) Dystonia (ii) Positional pain (sitting) (iii) Hip pain (iv) Moving and handling | (i) Frequency (not available) (ii) Regularity (not available)
| (i) Intensity: not available (ii) Nature: not available | No | (i) Acetaminophen (ii) Ibuprofen (iii) Baclofen (iv) Codeine (as backup) | (i) Repositioning 1-2-hourly (ii) Bean bag (alternative position) | (i) Challenge: protecting child against future fractures and pain associated with these (ii) Confidence: confident about knowing signs of child’s pain and what medication can be given (iii) Expectation: need to continue to be proactive about pain |
|