Abstract

Background to study:
Family carers play a crucial role in end-of-life care (EOLC), enabling cancer patients to live and die in the place of their choice. NICE guidance on supportive and palliative care recognises the importance of carers and recommends that their needs are “assessed, acknowledged and addressed”. However, there is little evidence that carer needs are being addressed during EOLC or that there are suitable tools to identify what support is most important to carers. We are currently undertaking an exploratory, qualitative study (Phase 1) using focus groups (FGs) with family carers and H@H nurses to identify key components in end-of-life care and aspects of support perceived to impact on bereavement. This application is for a Phase 2 project to design and evaluate a carer assessment tool which builds on Phase 1. In last year’s funding round, the Committee recommended that we re-submit a revised application for this part of the research study

Study aims:
(1) to design a Carer Support Needs Assessment Tool (CSNAT) to assist nurses in assessing EOLC and support, based on the findings of an exploratory study
(2) to test the utility, feasibility and psychometric properties of this tool to ensure that it is scientifically sound for wider dissemination and use.

Study design, setting and methods:
The CSNAT was developed from a synthesis of findings from the Phase 1 exploratory study, a literature review conducted on carer EOLC concerns and further input from a carer advisory panel convened during Phase 1. We have established a research network of five Hospice at Home (H@H) services within the National Forum for H@H. This network was used as a research base for the project to ensure a broad, representative study sample from diverse geographical areas of the UK.
The initial tool was piloted with a sample of 10 carers to assess whether the tool and the study procedures are acceptable to carers and health professionals. Next, the revised tool wasl used in a carer postal survey (N=226).  H@H nursing teams within the five Hospice at Home services assisted with recruitment, identifying carers for the sampling frame and sending study research packs.
Postal survey research packs were sent to carers shortly after admission of the patient and carer to the H@H service and contained the Carer Support Needs Assessment Tool, a form for demographic information, criterion measures (including caregiver burden and Quality of Life) and consent forms for self completion and return to the research team. H@Hs also provided anonymous data on patient and carer age, gender and patient diagnosis for those invited to take part, in order to assess representativeness of participants relative to the sampling frame.
Descriptive statistics were used to summarise carer assessments of service input. To test the reliability and validity of the tool we standard tests of reliability, factor analysis and criterion oriented validation procedures were used, including Cronbach’s alpha co-efficient and validity testing techniques such as Pearson’s r or Spearman’s Rank test.

Conclusion:
The CSNAT proved to be easy to complete for carers and appears to measure three key underlying factors (dealing with uncertainty, everyday caring duties, time away from caring) which show significant correlations with carer strain, distress, preparedness and caregiving appraisals.