Primary care support during transition from children’s hospice care Other
Conditions
Interventions
The HOPSCOTCH study comprises three workstreams (WS), using an adapted Experience-Based Co-Design (EBCD) approach to develop and assess a primary care intervention supporting transitions from children
Sponsors
University of Leeds
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Young people: 1. Young person with a life limiting condition 2. Minimum 14 years of age 3. Previous or current user of children’s hospice services 4. The young person must be approaching transition to adult services, in the process of transitioning to adult services or have transitioned to adult services within the last 5 years 5. Capacity (with support if required) to understand information and consent either in written or verbal form 6. Capacity and willingness to take part in a discussion about their experience Parent or carer: 1. Parent or carer from the same household of a young person with a life limiting condition who is approaching transition to adult services, in the process of transitioning to adult services or has transitioned to adult services within the previous 5 years 2. Minimum 18 years of age 3. Parent or carer of a young person who is a previous or current user of children’s hospice services 4. Family or carers may still participate in the study if their young person has died within the previous 5 years and experienced any of the above stages of transition prior to death 5. Capacity to understand information and consent either in written or verbal form 6. Capacity and willingness to take part in a discussion about their experience Healthcare professional: 1. Minimum 18 years of age 2. Work in primary care, adult hospice or children's hospice 3. Hospice staff has a role or responsibility in supporting transition 4. Capacity to understand information and consent either in written or verbal form 5. Capacity and willingness to take part in a discussion about their experience
Exclusion criteria
Exclusion criteria: Young people: 1. Transition to adult services occurred more than 5 years ago 2. Under 14 years of age 3. Young people who are too unwell (as judged by the healthcare professional making initial contact) will not be approached for interview, but their family members may still participate if they wish to 4. Young people who are unable to participate in a conversational interview for any reason related to their condition will not be approached for interview, but their family members may participate if they wish to Parent or carer: 1. Transition to adult services occurred more than 5 years ago 2. Unable to provide informed consent Healthcare professionals: 1. None
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1.Semi-structured interviews will be used to understand and explore the experience of transitioning from children’s hospice support, from the perspectives of young people with life limiting conditions and their families. 2.Semi-structured interviews will be used to understand and explore the experience of supporting transition of young people with life limiting conditions and their families, from the perspectives of healthcare professionals working in primary care and adult or children’s hospices. 3.Reflexive thematic analysis will be used to draw out key themes from the data and identify opportunities to enhance engagement of general practice in the coordination and delivery of care to young people as they transition from children’s hospices. 4.Experience-based co-design (EBCD) inspired methodology will be used to co-design a complex intervention (the HOPSCOTCH toolbox) to facilitate this enhanced engagement. | — |
Secondary
| Measure | Time frame |
|---|---|
| There are no secondary outcome measures | — |
Countries
England, United Kingdom
Contacts
Public ContactEmma Chapman
Outcome results
None listed