Dr Khadija Chaudhry – Clinical Psychologist Frances Chalmers – Occupational Therapist Clinical Specialist

ICANHO Specialist Brain Injury Rehabilitation Centre

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

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)

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

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

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

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

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

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

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

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

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

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

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

Practical Exercise How does your service involve carers and families?

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