Table 2:
Thematic analysis covering the challenges, coping and needs or expectation.
| Theme | Subtheme | ||
|---|---|---|---|
| Domain | |||
| Challenges | Coping | Needs/Expectation | |
| Physical wellbeing | 1. Inadequate sleep 2. Night feeding/suction 3. Back pain 4. Infection transmission |
1. Work through with spouse 2. Take rest when child was sleeping 3. Help from other family members |
1. Help to carry patient 2. Respite when I take shower 3. Feeding machine as in hospital usage |
| Environmental/Equipment | 5. Admission and registration 6. Bed 7. Parking 8. Toilet 9. Temperature 10. Food/Entertainment 11. Disturbance 12. Phone line/Internet 13. Travelling |
4. Low expectation (Acceptance) 5. Priority (Care quality) 6. Get support from Disability Living Allowance |
4. Feeding pump at night 5. Equipment for mobility and transfer 6. Toilet bigger, clean, dry 7. Flexible registration 8. Option for room and bed 9. Parking lots 10. On time feeding/medication |
| Relationship/Social wellbeing | 14. Focus fully on patient 15. Relationship with spouse 16. Care for other children 17. Family members’ involvement 18. Family social activities 19. Communication with PICU staff |
7. Keep simple life 8. Exercise after settling the patient 9. Learn to keep silence when having different opinion with spouse 10. New friendship with other parents and volunteers in ward 11. Keep friends’ support 12. Not to involve neighbour (to avoid critic) 13. Talks to spouse and family first 14. Work through with staff 15. Being more understanding |
11. Supports from spouse and family members 12. Friendly and supportive relationship with staff 13. Need honest, up-to-date information 14. Want their concerns being heard 15. Explanation for other family members |
| Financial wellbeing | 20. Stress on financial issues 21. Need money for transport, formula milk, phone bills, diapers 22. No financial issue |
16. Cut down expenses, cook mainly at home 17. Need to work extra jobs 18. Work at home 19. Sell properties |
16. Money for milk, diapers, transport |
| Occupational wellbeing | 23. Frequent emergency leave 24. Frequent unpaid leave 25. Work accumulates |
20. Work out with spouse 21. Single parent care 22. Work at home/hospital |
17. Flexible working time |
| Rational/Intellectual wellbeing | 26. Learning for home feeding, suction, medication, physiotherapy 27. Time management 28. Medical information 29. Decision making (e.g. tracheostomy) |
23. Role setting with spouse 24. Only handle priority of care 25. Details planning before trip 26. Be more independent 27. Bring patient along to work 28. Learn from experience 29. Get information online 30. Compliance to all doctor’s advice |
18. Getting experience and training from medical team 19. Actively being a part of team 20. Improve parenting and time management skills |
| Mental/Emotional wellbeing | 30. Worry 31. Boring 32. Sad 33. Lonely 34. Suicidal thought 35. Stressful to leave patient 36. Fluctuation of conditions 37. Guilty |
31. Relax 32. Think positive 33. Cry 34. Stay strong 35. Acceptance, believe in God 36. Reduce expectation 37. Focus on work |
21. Medical information 22. Need reassurance about their care technique 23. Respite when I pray 24. Emergency care plan |
| Spiritual/Attitude well being | 38. Uncertainty 39. Uncontrollable 40. Self-Value (confidence) 41. Meaning in life 42. Forgiveness 43. Judgement |
38. Believe in God (things will be better) 39. Acceptance (less expectation) 40. Search for alternative treatment (hope) 41. New meaning (patient) 42. Live in presence, stop thinking 43. Relax and be thankful |
25. Information about the prognosis and how to maintain hope 26. Need more time for praying 27. Best interest discussion with staff |