Creating Capacity: Evaluating Macmillan Carer Support Schemes

1. 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

2. 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

3. Macmillan Cancer Relief UK charity • trained health professionals • cancer care centres • financial help • information • Social Care Programme Carers Research Partnership

4. 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

5. 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

6. Creating Capacity: Design Action research • data collection, analysis, interpretation combined with • results being fed back into service development Carers Research Partnership

7. 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

8. 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• Fife Central • Glasgow West 1 scheme in England yet to be recruited (Edinburgh scheme closed, 1 English scheme withdrawn) Carers Research Partnership

9. 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

10. Creating Capacity: Current data collection • Activity levels, demographic details, referrer, cancer type • Descriptive information • Used internally or reported to Advisory Group Carers Research Partnership

11. 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

12. 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

13. 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

14. 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

15. 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

16. 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

17. 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

18. 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