Carers of people with Parkinson’s and cognitive impairment Other
Conditions
Interventions
WS1: Adaption of iSupport
The adaptation of iSupport will follow the validated person-based approach (PBA) to intervention development. The adaptation process will be guided by a stakeholder panel con
Sponsors
Northumbria University
Eligibility
Sex/Gender
All
Age
18 Years to 100 Years
Inclusion criteria
Inclusion criteria: 1. Adults (aged 18+ years) who self-identify as an unpaid carer (partners, children, friends, etc) of a person with Parkinson’s and cognitive impairment, who is not living in a full-time care facility, caring at least weekly for at least 6 months 2. The care recipient must have symptoms of cognitive impairment (through self-report of the care partner, using the DIAMOND toolkit, to reflect the ‘real world’ application of iSupport-PD)
Exclusion criteria
Exclusion criteria: 1. Receiving psychological treatment from a mental health specialist at the time of recruitment 2. Unable to comprehend written English 3. No access to the internet 4. Unable to give informed consent to the trial 5. The care recipient has a diagnosis of an atypical Parkinsonian syndrome (i.e. progressive supranuclearpalsy, multiple system atrophy, corticobasal degeneration or Lewy body dementia)
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The feasibility of conducting a larger powered randomized controlled trial to evaluate the effectiveness and cost-effectiveness of iSupport-PD versus usual care. Feasibility will be determined through a composite of successful recruitment, data collection completeness, intervention engagement, study attrition rate, suitability and sensitivity of outcome measures, and feasibility of collecting data on costs and health and social care use. Participant engagement with iSupport-PD will be investigated using data collected from Matomo Analytics and will include data such as number of accesses and length of time spent on each page. Data will be collected at baseline, 3 months after baseline, 6 months after baseline, and 12 months after baseline. | — |
Secondary
| Measure | Time frame |
|---|---|
| Measured at baseline, 3 months after baseline, 6 months after baseline, and 12 months after baseline: 1. Caregiver burden measured using the short form 12-item Zarit Burden Interview (ZBI-12) 2. Depression measured using the Center for Epidemiologic Studies Short Depression Scale (CES-D-10) 3. Anxiety measured using the generalised anxiety disorder scale (GAD-7) 4. Resilience measured using the Resilience Scale (RS-14) 5. Quality of relationship measured using the Dyadic Relationship scale 6. Quality of life of carers measured using the Parkinson's Disease Questionnaire for Carers (PDQ-C) 7. Self-efficacy measured using the General Self-Efficacy scale 8. Positive aspects of caregiving measured using the Positive Aspects of Caregiving Scale (PACS) 9. Health-related quality of life measured using the EuroQol-5 Dimension (EQ-5D-5L) 10. Social care related quality of life measured using the ASCOT-Carer SCT4 11. Health and social care service use and associated costs: an economic evaluation will be conducted by costing of resources (capital equipment, staff time, length of stay in hospital and changes in social care) and carrying out a cost-utility analysis by exploring Quality-Adjusted Life Years (QALYS) derived from the EQ-5D-5L data collected at baseline, 3,6 and 12 months post-randomisation | — |
Countries
England, Northern Ireland, Scotland, United Kingdom, Wales
Outcome results
None listed