Creating Capacity: Evaluating Macmillan Carer Support Schemes Audrey Stephen and Rosemary Chesson Health Services Research Group Scottish Coalition of Carers Conference, Aberdeen, November 2004 Carers Research Partnership

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Scotland Fife Central Glasgow West 1 scheme in England yet to be recruited (Edinburgh scheme closed, 1 English scheme withdrawn) Carers Research Partnership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