Table 5.
Worries: Codes, Definitions, Frequencies and Sample Content for the question/prompt-“What are you worried about?”
| Code | Definition | Family Overall (n=95) | Parent (n=95) | Patient (n=22) | Sample Content |
|---|---|---|---|---|---|
| No Worries | no concerns, fears, apprehensions regarding transplant process | 27 (28.4%) | 19 (20%) | 8 (36.4%) | No worries, no specific concerns, not worried, not nervous |
| Many Worries | having too many worries to name them all; being apprehensive about everything | 15 (15.8%) | 14 (14.7%) | 1 (4.5%) | Worried about everything, nervous enough for both of them, normal worries, worried about many things and don’t know where to start |
| Family Impact | how the disease has and will affect the both immediate and extended family members; negative effect on family; separation from family; disruption of family unit; financial impact on family | 25 (26.3%) | 24 (25.3%) | 1 (4.5%) | Not being together, struggling to give equal time to all children, not being able to stay with the patient, worried about mother who is sick, worried about sister’s feelings if transplant fails, concerned about money, not being able to work |
| Bad Outcome | cancer returning; transplant is not successful; rejection of donor cells; patient never going into remission; failure of engraftment; fear of death | 17 (17.9%) | 17 (17.9%) | 1 (4.5%) | Treatment not working, cancer coming back, not getting better, not wanting to die, worried patient would view dying as letting his parents down |
| Side Effects / Complications | specific complications associated with transplant including negative physical or emotional symptoms, pain, distress, or hardship; fear of invasive, painful procedures | 43 (45.3%) | 32 (33.7%) | 11 (50%) | Worried about symptoms, afraid of having an NG tube, risk of infection, worried about GVHD, not wanting to be intubated, worried about misery associated with transplant |
| Transplant Process / Uncertainty | stress about any aspect of the transplant process; concern regarding following the rules of transplant; not knowing what to expect; feeling isolated | 21 (22.1%) | 19 (20%) | 4 (18.2%) | Worried about entire treatment process, unknowns, difficulty being away from friends, forced to remain in hospital room for extended amount of time |
| Ability to Return to Normalcy | concerns about how transplant will affect getting back to their daily life; concerns about falling behind educationally | 7 (7.4%) | 4 (4.2%) | 3 (13.6%) | Not getting back to normalcy, having to make changes to accommodate the patient’s needs, concern regarding intellectual development, being away from school |