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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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| 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 |
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