Table 3.
The congruence on end of life needs for adolescents living with HIV/AIDS between adolescent and surrogate (n=48 dyads)
| Question | Important N (%) |
Not important/or don’t know N (%) |
PABAK |
|---|---|---|---|
| How important would each of the following be to you if you were dealing with your own dying? | |||
| Family/friends visiting me | 43 (89.6) | 0 (0) | 0.79 |
| Staying in my own home | 34 (70.8) | 0 (0) | 0.42 |
| Honest answers from my doctor | 46 (95.8) | 0 (0) | 0.92 |
| Comfort from church services or persons such as a minister, priest, imam or rabbi | 26 (54.2) | 6 (12.5) | 0.33 |
| Planning my own funeral | 19 (40.4) | 10 (21.3) | 0.23 |
| Being able to complete an advance directive that would let loved ones know my wishes | 37 (77.1) | 0 (0) | 0.54 |
| Fulfilling personal goals/pleasure | 40 (83.3) | 1 (2.1) | 0.71 |
| Reviewing my life history with my family | 29 (60.4) | 3 (6.3) | 0.33 |
| Having healthcare professionals visit you at your home | 28 (58.3) | 2 (4.2) | 0.25 |
| Understanding your treatment choices | 45 (93.8) | 1 (2.1) | 0.92 |
| How important are each of the following to you when you think about dying? | |||
| Being physically comfortable | 40 (83.3) | 1 (2.1) | 0.71 |
| Being free from pain | 44 (91.7) | 0 (0) | 0.83 |
| Saying everything I want to say to people in my family | 39 (83.0) | 1 (2.1) | 0.70 |
| Being at peace spiritually | 41 (85.4) | 1 (2.1) | 0.75 |
| Not being a burden to loved ones | 33 (68.8) | 1 (2.1) | 0.42 |
| Knowing how to say good bye | 34 (70.8) | 1 (2.1) | 0.46 |
| Having a sense of my own worth or value | 36 (75.0) | 0 (0) | 0.50 |
| Being off machines that extend life, such as life support | 23 (47.9) | 3 (6.3) | 0.08 |
| Dying a natural death | 29 (60.4) | 3 (6.3) | 0.33 |
| How comfortable are you talking about death? | Comfortable 10 (20.8) |
Not comfortable or don’t know 14 (29.2) |
0.00 |
| When you think about death and dying, | Concerned | Not concerned/don’t know | |
| how concerned are you that you will be a burden to, or overload, my family or friends? | 9 (18.8) | 14 (29.2) | −0.04 |
| I am afraid the doctor may not believe I am in pain and treat my pain | Agree 3 (6.3) |
Don’t agree/don’t know 22 (45.8) |
0.04 |
Responses on Likert scale ranged from 1=very important, 2=somewhat important, 3=neither important nor unimportant, 4=not very important, 5=not at all important, 8=don’t know. Then regrouping as dichotomous response in the table as important=1 and 2, not important or don’t know=3, 4 and 5.
PABAK, prevalence-adjusted bias-adjusted Kappa.