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

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Macmillan Cancer Relief

UK charity

• trained health professionals

• cancer care centres

• financial help

• information

• Social Care Programme

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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

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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

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Creating Capacity: Design

Action research

• data collection, analysis, interpretation

combined with

• results being fed back into service development

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Creating Capacity: Aims

Aims

• Identify appropriate means of evaluating Macmillan Carers Schemes

• Determine needs of staff in relation to monitoring and evaluating their services

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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(Edinburgh scheme closed, 1 English scheme withdrawn)

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Creating Capacity: Work so far

• Current practice in reporting

• Review of literature

• Focus groups with key people:

- staff, referrers, service users

• Staff resource pack

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Creating Capacity: Current data collection

• Activity levels, demographic details, referrer, cancer type

• Descriptive information

• Used internally or reported to Advisory Group

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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

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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

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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

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Creating Capacity: Focus Groups

Themes discussed:

• Experience of evaluation

• Priorities for data collection

• Roles of key people in evaluation

• Pros and cons of evaluation

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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

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Creating Capacity: Next steps

• Glasgow focus groups

• Data collection at English scheme

• Collect more views at Macmillan Social Care Conference

• Create pilot data set

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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

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Creating Capacity: Conclusion

Highlights

• value of joint working (CRP/Macmillan)

• value of working with service providers and carers

• overlap between research and development

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