Abstract

Background
There is increasing emphasis on enabling patients to be cared for and to die in the place of their choice. For most people this is their own home[ Fulfilment of this choice is heavily dependent on the efforts of family carers. However, caregiving towards the end-of-life entails considerable emotional, social, financial and physical cost for carers, even increased mortality. There is evidence that good support can improve carer psychological outcomes longer term and that specialist palliative care may reduce carer mortality[9]. Government policy and guidelines stress that carer needs should be assessed and addressed and this is becoming part of Strategic Health Authority remit.
However, many factors hinder adequate assessment of carer support needs. Service providers focus on the patient, often have little time to undertake comprehensive screening for carers' problems, and may be reluctant to openly do so in the patient's presence. Any carer assessment is often informal and undocumented, making carer support needs less "visible". Carers themselves are also often reluctant to express their own needs and unlikely to feel these are legitimate.
There is furthermore a lack of suitable measures for assessment of carer support needs in end-of-life home care. While there are research-based questionnaires for measuring carer needs, their content and length generally make them unsuitable for use in everyday palliative care provision. Conversely, work by a Help the Hospices Carer Assessment Working Group showed that carer assessment undertaken by palliative home care services relies on ad hoc, non-validated tools that show little communality in content or format. To address this gap, we have developed an evidence-based, comprehensive Carer Support Needs Assessment Tool (CSNAT) suitable for use in all domains of palliative home care.

Aim
To conduct a “proof of concept” Before-After trial within one large, well organised hospice at home (H@H) to test whether regular use of CSNAT under favourable conditions is associated with improved carer outcomes and quality of care.

Method
The study will incorporate both quantitative and qualitative approaches in accord with MRC recommendations for evaluating complex interventions:
(a) a quantitative trial to assess the impact of the intervention (CSNAT use)
(b) qualitative exploration of context, users’ experience of the intervention and its relevant components
(c) development of a training guide to incorporate the perceived “active components” of the intervention into any further implementation