Community Rehabilitation: Working in Partnership with Families and Carers

1. Community Rehabilitation: Working in Partnership with Families and Carers Dr Khadija Chaudhry – Clinical Psychologist Frances Chalmers – Occupational Therapist Clinical Specialist

2. ICANHO Specialist Brain Injury Rehabilitation Centre

3. Session Outline • Background • Ways of working with families and carers at Icanho • Practical exercise • Feedback

4. Background: Research Evidence • Carers of people with stroke are vulnerable to difficulties in coping and to depression (Grant et al., 2004) • Caregiver burden following stroke has been identified as a significant health concern (Rigby et al., 2009) • Carers suffer a significant loss in their quality of life compared to the general population (Mar et al., 2011)

5. Background: Stroke Strategy 2007 • Strokes have a huge effect on people and upon their families (NSS, 2007) • Reportedly there is not enough information for carers • Carer involvement is vital in making decisions about treatment • Carers are vulnerable

6. National Strategy for Carers (2008) • When carers asked what mattered the most to them, they identified: • Freedom to have a life of their own • Maintaining their own health and well being • Confidence in the standard and reliability of services • Feeling that they share responsibility with service providers • A say in the way services are provided – carers expect that professionals should listen to and respect their views

7. Other important documents • “Recognised, valued and supported – Next steps for Carers Strategy (2010)” • “The New Deal for Carers (2007)”

8. Carers Journey with Icanho • Open referral, carers or families can refer • Screening • Carers Assessment • Carer involvement in feedback/planning meeting • Carer involvement in person centred rehab programme - Carers can be involved in clinical sessions, with clients permission • Carer support sessions • Carer Education Days • Kidz Groups • Secondary Stroke Prevention Groups • Signposting

9. Carers Assessment • To assess carers needs/expectations • Change/loss of role • Establish ways of coping - what is working/not working • Carer burden/stress • Relationship changes

10. Carer involvement in Feedback/planning meeting • Carer/family encouraged to attend • Therapy Outcome Measures (TOMs) • Feedback on the assessment process • Active participation encouraged in planning • Active involvement in the planning of review meetings

11. Carer Involvement in Person Centred Rehab Programme • Collaborative goal setting with client and the carers • Inclusion of family/carer in rehab sessions • Feedback to carer on session outcomes

12. Rehab Programme - Carer Support Sessions • Individual psychology therapy sessions for carers • Recognising and valuing carers input • Recognition of their own needs • Couples Therapy (including sexual issues) • Safeguarding issues • Psychoeducation

13. Carer Education Days • Quarterly • Introduction to the brain • Communication issues • Attention and memory • Changes in emotion and behaviour • Physical issues • Epilepsy • Opportunities for questions and discussion • Opportunity for carer networking • Free lunch and refreshments

14. Kidz Groups • Once or twice a year • In school holidays • Education about stroke in a child friendly way • Age appropriate • Opportunity to meet other children in similar circumstances

15. Secondary Stroke Prevention Groups • Baseline measures e.g., BMI • Promotion of healthy eating • Lifestyle • Exercise • Smoking cessation • Alcohol

16. Practical Exercise • How does your service involve carers and families?

17. Feedback

18. Any Questions