Children and young people with neurodisability Nervous System Diseases
Conditions
Interventions
This is a “mixed methods” study, as it uses a range of methods both numerical (“quantitative”) and non-numerical (“qualitative”). Our study will involve the use of questionnaires, but also observation
Sponsors
Newcastle upon Tyne Hospitals NHS Foundation Trust
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: 1. Children aged <16 years, and their families 2. Complex chronic needs related to neurodisability (e.g. cerebral palsy, epilepsy) 3. Hospital in-patients (admitted under any paediatric team) 4. Living within the North of Tyne/Gateshead ICP region 5. Parental consent to both the intervention and the evaluation
Exclusion criteria
Exclusion criteria: 1. Considered too medically unwell for SP intervention to be appropriate at this time; 2. Index case aged =16 years 3. Does not have a condition leading to neurodisability 4. Out of region 5. Unwilling to give consent to take part 6. If the potential participant is already involved in a research study, and taking part in our study would interfere with the findings of one or both studies, then we would not recruit them. If they are taking part in, or have taken part in, another research study that does not conflict with the current study, we would be happy for them to take part in this one, provided they would not be, or feel, overburdened by research commitments.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Qualitative measures: 1. Participant and link worker views on the social prescribing scheme including service provision and the link worker role measured using in-depth interviews at 6 months 2. Engagement with the scheme measured using in-depth interviews at 6 months and qualitative observations throughout the study All qualitative analyses will be conducted according to the standard procedures of rigorous qualitative analysis. We will use procedures from first-generation grounded theory (coding, constant comparison, memoing), analytic induction (deviant case analysis), and constructionist grounded theory (mapping). We will undertake independent coding and cross-checking and a proportion of data will be analysed collectively in data clinics (with the core research team) and workshops with stakeholders where people share and exchange interpretations of key issues emerging from the data. | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Non-medical needs assessment measured using the Support Star questionnaire at baseline, end of the intervention, and 6 months 2. Wellbeing measured using Outcomes Rating scales including age <5 years with proxy scoring (takes <1 min to complete) at baseline, end of the intervention, and 6 months 3. Quality of life measured using the EQ-5D for adults or CHU-9D for children including proxy version (takes<5 min) at baseline, end of the intervention, and 6 months 4. Mental wellbeing measured using the Warwick-Edinburgh Mental Wellbeing Scale for parents (takes <5 min) at baseline, end of the intervention, and 6 months 5. The financial strain on the family measured using three questions to participants (takes <1 min to complete) at baseline, end of the intervention, and 6 months 6. Process evaluation using numbers referred, throughput to other services, and retention throughout the study | — |
Countries
United Kingdom
Contacts
Public ContactSonia Townend
Outcome results
None listed