Gillian Parker Hilary Arksey Melissa Harden

 Background to the review  Methods  Findings  Raising questions about appropriate outcomes to use in evaluation research

 National Strategy 2008  DH and Standing Commission on Carers  Understanding of what we know about what are effective interventions to support carers  Commissioned to carry out a meta-review (review of reviews) to address this issue  NOT about ‘normal’ services

 Followed a defined search strategy  Screened over 11,000 references  Appraised nearly 300 articles and reports for relevance and quality  Scope of the field based on 34 reviews (20 higher quality; 14 lower quality)  Detailed analysis for meta-review based on 20 higher quality reviews

Types of interventions reviewed:  Psychosocial, psycho-educational psychological  Respite care  Information, education, knowledge, communication  Health service interventions  Diverse mix

Target carer groups:  Carers of people with dementia/older people  Carers of: stroke survivors; people with kidney disease; heart patients; palliative and cancer carers; bipolar patients; people with COPD  Carers in general

Types of outcomes measured:  Carer burden, strain or stress  Psychological or mental health  Subjective well-being or QoL  Knowledge or caring ‘competence’  Physical health  Satisfaction  Costs

Number of primary studies included in reviews  Ranged from 0 to over 150  Overlap of primary studies International coverage  Majority of primary studies in systematic reviews from USA, followed by UK

OutcomeEvidence Physical Health Carers of PwD – no evidence of benefit Carers of PwDC – weak evidence Mental or psychological healthNo consistent evidence Burden, stress or strainNo consistent evidence Well-being or QoLNo consistent evidence Coping and coping skills Some positive evidence from psychosocial interventions for carers of PwD; Weaker evidence for carers of PwDC Knowledge Some positive evidence from psychosocial interventions, carer support groups and carer training for carers of PwDC SatisfactionSome positive evidence from range of interventions for carers of PwDC

Outcome Evidence Physical Health Carers of PwD – no evidence of benefit of respite Mental or psychological health Carers of PwD – psychosocial may improve depression Carers of people who have had a stroke – education/training may improve psychological health Contradictory evidence about respite Burden, stress or strain No evidence of benefit Well-being or QoL Inconsistent evidence. Respite may have negative effect. Psycho-education remains to be properly reviewed Coping and coping skills Inconsistent or weak evidence Knowledge Education/training works if focused Satisfaction No evidence of benefit

 Quality of the primary studies – small, poorly conducted, inadequate ‘control’  Short-term follow-up  Difficulties of doing this sort of research  Gaps in groups covered: other than dementia, BME groups, rural carers, other relationships  Are we looking at the right outcomes?

 Lack of theory in designing interventions  Need ‘proof of principle’ work  Need efficacy trials before effectiveness trials  Need costs to be included  Finding better outcomes to include in studies  Is ‘carer intervention’ the right way forward, given what we know about the importance of ‘services’?

Gillian Parker: Social Policy Research Unit University of York York YO10 5DD SPRU website address