Objectives To test the impact on family carers of a Carer Support Needs Assessment Tool (CSNAT) intervention to facilitate carer-led assessment and support during end of life care.
Method Mixed method, part-randomised, stepped wedge cluster trial with 6 palliative home care services comparing carers receiving the intervention with those receiving standard care. Postal survey with carers 4–5 months postbereavement measured adequacy of end of life support, current mental and physical health (Short Form 12 Health Survey SF-12), level of grief (Texas Revised Inventory of Grief, TRIG) and distress (Distress Thermometer, DT), place of death and carer satisfaction with place of death.
Results Surveys were sent to 3260 (76%) carers of 4311 deceased patients; 681 (21%) were returned (N=333 control, N=348 intervention). Compared with controls, intervention carers had significantly lower levels of early grief, better psychological and physical health, were more likely to feel the place of death was right, and patients were more likely to die at home. However, differences were small and process measures showed low level of implementation, indicating differences may partially relate to increased awareness of carer issues rather than a direct impact of the intervention.
Conclusions Carers had better outcomes in the intervention condition, albeit modest. If this can be achieved through low level implementation and awareness raising of carers’ needs from implementation activities, substantial impact should be possible if the CSNAT intervention can be fully implemented with a majority of carers. The study illustrates challenges of implementing and testing a complex intervention in real-life practice and of achieving comprehensive carer assessment and support in line with government recommendations.
- Family carers
- Home care
- End of life
- Needs assessment
- Stepped wedge cluster trial
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