Palliative care needs in children, adolescents and young adults, and caregiver burden and wellbeing among their family caregivers Other
Conditions
Interventions
The study consists of two arms: an intervention arm receiving the PALLIAKID Intervention in addition to standard paediatric palliative care, and a control arm receiving standard care only. Participant
randomisation is generated through the IDAS system and implemented in the electronic case report form (eCRF).
Participants in this arm receive usual paediatric palliative care plus a multicomponent i
Sponsors
Fundació Privada per a la Recerca i la Docència Sant Joan de Déu (FSJD-CERCA)
Eligibility
Sex/Gender
All
Age
6 Years to 19 Years
Inclusion criteria
Inclusion criteria: Inclusion criteria for family caregivers: 1. Family caregivers of a patient (aged =0 years and <20 years at study start, of any gender) affected by a non-oncologic life-limiting or life-threatening disease, and referred to a paediatric palliative care team of the site 2. Ability to speak, read and understand in either of the official languages of the country or English 3. With access to an internet connection and mobile device (e.g., smartphone or tablet) 4. Signed informed consent form. The consent from parent(s)/guardian(s) will be obtained following the rules of the specific countries Inclusion criteria for patients: 1. Patients aged =6 years and <20 years at study start, of any gender 2. Affected by a non-oncologic life limiting or life-threatening disease 3. Currently receiving care by/referred to a paediatric palliative care team at one of the participating clinical sites 4. Appropriate communication skills in either of the official languages of the country or English 5. With access to an internet connection and mobile device (e.g., smartphone or tablet) 6. Signed informed consent form for patients older than 18 years old and signed informed assent for patients, when required, according to the rules of the specific countries Inclusion criteria for siblings: 1. Children and Adolescents and Young Adults (AYAs) aged =6 years and <20 years at study start, of any gender 2. Appropriate communication skills in either of the official languages of the country or English 3. With access to an internet connection and mobile device (e.g., smartphone or tablet) 4 .Signed informed consent for participants older than 18 years old and signed informed assent for participants younger than 18 years old, when required, according to the rules of the specific countries Inclusion criteria for healthcare professionals: Any health professional being part of the paediatric palliative care team of the participant site working with patients (aged =0 years and <20 years at study start, of any gender) affected by a nononcologic life-limiting or life-threatening disease.
Exclusion criteria
Exclusion criteria: Exclusion criteria for patients, siblings, and family caregivers: Anyone who is not able to participate in the study according to the clinical judgement of the site chief investigator or any other authorised person of the research team if deemed that participation could be harmful. This judgement has to be documented in writing for each child/parent not being enrolled.
Countries
Denmark, Finland, Italy, Latvia, Spain
Contacts
Public ContactSergi Navarro Villarrubí
Outcome results
None listed