creating capacity: evaluating macmillan carer support schemes
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Carers Research Partnership. Creating Capacity: Evaluating Macmillan Carer Support Schemes. Audrey Stephen and Rosemary Chesson Health Services Research Group Scottish Coalition of Carers Conference, Aberdeen, November 2004. Creating Capacity: Introduction. Background information - PowerPoint PPT PresentationTRANSCRIPT
Creating Capacity: Evaluating Macmillan Carer Support Schemes
Audrey Stephen and Rosemary ChessonHealth Services Research Group
Scottish Coalition of Carers Conference, Aberdeen, November 2004
Carers ResearchPartnership
Creating Capacity: Introduction
Background information
• Macmillan Cancer Relief
• Macmillan Carer Support Schemes
• Involvement of CRP with Macmillan
The research
• Aims, work so far
• Early findings, next steps
Carers Research
Partnership
Macmillan Cancer Relief
UK charity
• trained health professionals
• cancer care centres
• financial help
• information
• Social Care Programme
Carers Research
Partnership
Macmillan Carer Support Schemes
Family and friends can feel great strain
Help carers meet needs of person with cancer
• Practical tasks
• Respite support
• Emotional care
• Overnight support
Carers Research
Partnership
Creating Capacity: Its beginnings
• Macmillan developing social care
• Encourages support for carers
• Ongoing evaluation of services
• CRP asked to collaborate
• Developments to be informed by people affected by cancer
Carers Research
Partnership
Creating Capacity: Design
Action research
• data collection, analysis, interpretation
combined with
• results being fed back into service development
Carers Research
Partnership
Creating Capacity: Aims
Aims
• Identify appropriate means of evaluating Macmillan Carers Schemes
• Determine needs of staff in relation to monitoring and evaluating their services
Carers Research
Partnership
Creating Capacity: Setting
2 Macmillan Crossroads Carers Support Schemes in Scotland
• Fife Central
• Glasgow West
1 scheme in England yet to be recruited
(Edinburgh scheme closed, 1 English scheme withdrawn)
Carers Research
Partnership
Creating Capacity: Work so far
• Current practice in reporting
• Review of literature
• Focus groups with key people:
- staff, referrers, service users
• Staff resource pack
Carers Research
Partnership
Creating Capacity: Current data collection
• Activity levels, demographic details, referrer, cancer type
• Descriptive information
• Used internally or reported to Advisory Group
Carers Research
Partnership
Creating Capacity: Literature
Some themes:
• Carers neglect own needs• Wide range of tasks, develop expertise• Physical, emotional, intellectual
challenges • Need to make sense of cancer
experience• Professionals over-simplify carers’
experience
Carers Research
Partnership
Creating Capacity: Literature
• Cancer mainly represented as a medical/nursing concern
• Little literature on social care interventions
• Mirrors difficulty of service providers in finding a place for Carers Support Schemes
Carers Research
Partnership
Creating Capacity: Focus Groups
Focus groups held with:
• 11 scheme staff – co-ordinators, support workers
• 9 referrers (Fife) – DNs, HVs, Oncology Sister, GP, OT, SW
• 7 service users (Fife) – 2 people with cancer, 5 ex-carers
Carers Research
Partnership
Creating Capacity: Focus Groups
Themes discussed:
• Experience of evaluation
• Priorities for data collection
• Roles of key people in evaluation
• Pros and cons of evaluation
Carers Research
Partnership
Creating Capacity: Staff Resource Pack
• Need to embed evaluation in service
• Learning needs identified
• Pilot resource pack produced
- accessing information, critical appraisal, collecting data, data protection, carers research, glossary
Carers Research
Partnership
Creating Capacity: Next steps
• Glasgow focus groups
• Data collection at English scheme
• Collect more views at Macmillan Social Care Conference
• Create pilot data set
Carers Research
Partnership
Creating Capacity: Next steps
• Interview key people on suitability of data set
• Pilot data set in included schemes
• Monitor and evaluate
• Roll out across all UK schemes
Carers Research
Partnership
Creating Capacity: Conclusion
Highlights
• value of joint working (CRP/Macmillan)
• value of working with service providers and carers
• overlap between research and development
Carers Research
Partnership