Table 3. Congruence Between Adolescents’ and Families’ Perception of What They Thought Their Adolescents Preferred.
| Questiona | Dyads with congruent responses, No. (%) (N = 80) | PABAKb |
|---|---|---|
| How important would each of the following be to you if you were dealing with your own dying? | ||
| Family and friends visiting me | ||
| Important | 77 (96.3) | 0.93 |
| Otherwise | 0 | |
| Staying in my own home | ||
| Important | 53 (66.3) | 0.38 |
| Otherwise | 2 (2.5) | |
| Honest answers from my doctor | ||
| Important | 78 (97.5) | 0.95 |
| Otherwise | 0 | |
| Comfort from church services or persons such as a minister, priest, imam, or rabbi | ||
| Important | 47 (58.8) | 0.58 |
| Otherwise | 16 (20.0) | |
| Planning my own funeral | ||
| Important | 29 (36.3) | 0.23 |
| Otherwise | 20 (25.0) | |
| Being able to complete an advance directive that would let loved ones know my wishes | ||
| Important | 60 (75.0) | 0.58 |
| Otherwise | 3 (3.8) | |
| Fulfilling personal goals or pleasure | ||
| Important | 72 (90.0) | 0.83 |
| Otherwise | 1 (1.3) | |
| Reviewing my life history with my family | ||
| Important | 41 (51.3) | 0.25 |
| Otherwise | 9 (11.3) | |
| Having health care professionals visit me at my home | ||
| Important | 49 (61.3) | 0.45 |
| Otherwise | 9 (11.3) | |
| Understanding my treatment choices | ||
| Important | 78 (97.5) | 0.95 |
| Otherwise | 0 | |
| How important are each of the following to you when you think about dying? | ||
| Being physically comfortable | ||
| Important | 69 (86.3) | 0.73 |
| Otherwise | 0 | |
| Being free from pain | ||
| Important | 67 (83.8) | 0.68 |
| Otherwise | 0 | |
| Saying everything I want to say to people in my family (n = 79 dyads)c | ||
| Important | 75 (94.9) | 0.92 |
| Otherwise | 1 (1.3) | |
| Being at peace spiritually | ||
| Important | 65 (81.3) | 0.65 |
| Otherwise | 1 (1.3) | |
| Not being a burden to loved ones | ||
| Important | 56 (70.0) | 0.45 |
| Otherwise | 2 (2.5) | |
| Knowing how to say goodbye | ||
| Important | 60 (75.0) | 0.55 |
| Otherwise | 2 (2.5) | |
| Having a sense of my own worth or value | ||
| Important | 62 (77.5) | 0.58 |
| Otherwise | 1 (1.3) | |
| Being off machines that extend life, such as life support | ||
| Important | 24 (30.0) | 0 |
| Otherwise | 16 (20.0) | |
| Dying a natural death | ||
| Important | 34 (42.5) | 0.18 |
| Otherwise | 13 (16.3) |
Abbreviation: PABAK, prevalence-adjusted, bias-adjusted κ.
a
Important included very important and somewhat important. Otherwise included neither important nor unimportant, not very important, not at all important, and do not know.
b
Less than 0.40 denotes poor, 0.40 to 0.59 denotes fair, 0.60 to 0.74 denotes good, and 0.75 to 1.00 denotes excellent congruence.
c
One dyad was excluded because data were missing for the adolescent.