None listed
Conditions
Brief summary
The primary purpose of this study is to develop and evaluate a decision aid tool for parents/carers of children with cancer, and adolescents with cancer to assist in the decision making process of clinical trial enrolment. Who is it for? You may be eligible to participate in this study if you are either a parent/carer of a child with cancer who has been invited to participate in the Study 9 clinical trial; or if you are aged 12-18 years of age, having had a cancer diagnosis and been invited to participate in the Study 9 clinical trial. Study details Parents/carers and adolescents enrolled with either receive the decision aid as a hard copy or as an online tool. They will then be asked to complete two short questionnaires (one before looking at the decision aid, and one after), including several open ended items, asking for their feedback regarding the decision aid, either by hard copy or online as chosen by each participant. It is hoped that this study will result in an acceptable and feasible online decision aid tool, which will assist parents/carers of children with cancer, and young people with cancer with the decision of whether or not to participate in a clinical trial.
Interventions
A hard-copy and online decision aid about enrollment in paediatric oncology clinicial trials for parents and young patients. A decision aid is a patient information tool with an emphasis on guidance about making a decision, including value-clarification exercises.
The decision aid (DA) will be provided to parents and adolescents who have already made the decision to enrol in a clinical trial. Participants will have the option to evaluate either the hard-copy DA or the online website. The DA wi
A hard-copy and online decision aid about enrollment in paediatric oncology clinicial trials for parents and young patients. A decision aid is a patient information tool with an emphasis on guidance about making a decision, including value-clarification exercises. The decision aid (DA) will be provided to parents and adolescents who have already made the decision to enrol in a clinical trial. Participants will have the option to evaluate either the hard-copy DA or the online website. The DA will be assessed for acceptability and feasibility, with time spent reviewing the DA content up to individual participants. Questionnaires will be completed prior to reviewing the DA, and immediately after reviewing the DA. The questionnaires are estimated to take approximately 10 minutes each. There is no further follow-up once completing the second questionnaire
Sponsors
Behavioural Sciences Unit
Eligibility
Sex/Gender
All
Age
12 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
Parent/carers of children with cancer whose child: a) is under 18 years of age b) has been invited to participate in the Study 9 Phase III clinical trial. Adolescents and young adults who have been diagnosed with cancer a) is between 12 - 18 years of age b) has been invited to participate in the Study 9 Phase III clinical trial. All participants will be able to (i) give informed consent/assent; and (ii) read English.
Exclusion criteria
a) AYAs and parents/carers who were not offered participation in a clinical trial by their treating team b) Parents/carers with insufficient English to read the decision aid and complete questionnaires c) Parents/carers of children who are deemed inappropriate to participate in the study by their treating oncologist due to poor psychological well-being or other psychiatric condition d) Individuals not capable of providing fully informed consent due to any psychiatric or cognitive difficulties.
Outcome results
None listed