Improving communication on advance care planning (ACP) topics between adolescents with cancer and their parents Cancer
Conditions
Interventions
Current intervention as of 04/05/2021:
The intervention group will receive the BOOST pACP intervention (Benefits of Obtaining Ownership Systematically Together), in addition to standard care. The cont
Sponsors
Vrije Universiteit Brussel
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Adolescent (patient): 1. Aged between 10 and 18 years 2. Diagnosis of cancer = 3 months prior to inclusion 3. Aware of, or informed about, cancer diagnosis according to parent(s) 4. Receiving treatment in a pediatric oncology ward 5. Fluent Dutch language understanding Parent: 1. Aware of or informed about the diagnosis of their child according to the clinician 2. Fluent Dutch language understanding Pediatric oncologist: 1. Medically involved in the treatment of the adolescent 2. Indicated by the family to be the oncologist with whom the family has most contact about treatment 3. Fluent Dutch language understanding
Exclusion criteria
Exclusion criteria: Adolescent (patient): 1. Participated in the feasibility test 2. Intellectual disabilities to an extent that general communication is very difficult or heavy mental health problems to an extent that the extra effort of participating in the study is not justified (estimated by the pediatric oncologist and psychologist) 3. Life expectancy =3 months 4. Not receiving active treatment (in follow up or in remission) Parent: 1. Participated in the feasibility test 2. Intellectual disabilities to an extent that general communication is very difficult or heavy mental health problems to an extent that the extra effort of participating in the study is not justified (estimated by the pediatric oncologist and psychologist)
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1. Parent-adolescent communication from the perspective of the adolescent, measured by the Parent-Adolescent Communication Scale (PACS) (Dutch translation by translation agency for this study) at baseline, 3, and 7 months | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Adolescent attitude, self-efficacy, behavior, and intention to communicate about ACP topics with parent(s), measured using self-developed items constructed based on the Theory of Planned Behavior at baseline, 3, and 7 months 2. Adolescent behavior and intention to communicate about ACP topics with a pediatric oncologist, measured using self-developed items (constructed based on the Theory of Planned Behavior) at baseline, 3, and 7 months 3. Adolescent quality of life (for cost-effectiveness), measured using the EuroQol 5-dimension quality of life questionnaire (EQ-5D-Y) at baseline, 3, and 7 months 4. Adolescent satisfaction items and items on perceived effect only for the intervention group (on intervention components and the intervention as a whole) measured using self-developed items at 3 and 7 months 5. Parent(s) attitude, self-efficacy, behavior and intention to communicate about ACP topics with their child, measured using self-developed items (constructed based on the Theory of Planned Behavior) at baseline, 3, and 7 months 6. Parent(s) perspective of the level of shared decision making in the last clinical encounter with the pediatric oncologist, measured using the CollaboRATE for parents at baseline, 3, and 7 months 7. Parent(s) satisfaction items and items on perceived effect only for the intervention group (on intervention components and the intervention as a whole) measured using self-developed items at 3 and 7 months 8. Pediatric oncologists behavior and intention to communicate about ACP topics with the family, measured using self-developed items (constructed based on the Theory of Planned Behavior) at baseline, 3, and 7 months 9. Level of anxiety the past week measured using the Patient-Reported Outcomes Measurement Information System (PROMIS) in the questionnaires for adolescents and parents at baseline, 3, and 7 months 10. Perceived effects of the intervention measured using semi-structured face-to-face interviews with a selection of adolescents | — |
Countries
Belgium
Outcome results
None listed