Abstract

Objectives: The Finnish Government has launched ‘Key Projects’. One of those aims to enhance informal care so that it would better support the wellbeing of informal carers and persons being cared for. Good and effective practices will be disseminated. To be able to comment on effectiveness, there is a need for outcome information. Good outcome measures can help to assess the support needs of carers and families, as well. We tested the acceptability and feasibility of two outcome measures to measure the outcomes of support for informal cares. These are the Carer Experience Scale (CES; one of the ICECAP capability measures), and a tool for family/fried (unpaid) carers (Carer SCT4; belongs in the Adult Social Care Outcomes Toolkit). The CES measures the caring experience focused on care-related quality of life and the Carer SCT4 measures the social care-related quality of life.

Methods: We tested the acceptability and feasibility of the measures as a part of the process, where the care system assesses the support needs of a carer and the person being cared for, and the eligibility for support. We also tested if the follow-up survey with the measures can be used to indicate the outcomes of the support. The care coordinators asked 15 carers, who claimed support and compensation for care paid to the carer, to complete the CES and the Carer SCT4 questionnaires. A follow-up survey will be conducted about half a year later, during spring 2018. The acceptability and feasibility was studied by interviewing the carers and the care coordinators. The difference in the CES and the Carer SCT4 scores between the first and the second time point will be studied, and it will be evaluated if the tools can be used to measure the outcomes of the support routinely as a part of care practice.

Results: Both the CES and the Carer SCT4 were found to be acceptable and understandable for the carers and feasible for the care coordinators. Both measures were clear and easy to complete and helped to talk about important issues and tailor support for the carer and the family. The CES - a three-level instrument with six questions – is somewhat shorter and simpler to complete than the Carer SCT4 – a four-level instrument with seven questions. The latter can be more sensitive. The domains were also partly different the Carer SCT4 being more clearly related to the support the carer receives. The results of the applicability of the follow-up surveys to measure outcomes will be available in September.

Conclusions: The pilot indicates that both measures, the CES and the Carer SCT4, can be used to assess care and support needs of informal carers. Conclusions on the follow-up surveys will be available in September. Collecting outcome data routinely as a part of care practice enhances possibilities to use data in planning and decision making as well as in effectiveness studies with observational design. If also cost data were available, possibility to conduct cost-effectiveness studies (observational design) on supporting informal care would be enhanced.