INVALUABLE: assessment of the contribution made by unpaid carers within the context of cost-effectiveness analysis

Through focus groups (held in both San Sebastián and Wales), the aim is to answer the research question: What do unpaid carers of people with dementia think about the current options for valuing their time in economic assessments?

Objective: To raise initial questions regarding how to value carers’ unpaid time using indicators of well-being or quality of life, and with defined tasks, in order to guide the development of future research on the best methodology for including carers’ unpaid time in the economic evaluation of interventions for dementia.

Methodology:

Study design and setting. Several focus groups (3 in Wales, 2 in the Basque Country) were conducted with carers of people with dementia who had previously been sent the various assessment questionnaires most widely used to measure quality of life and people’s needs, to discuss whether these were appropriate from the carers’ perspective. The use of this qualitative research method will enable us to define the initial perspectives of unpaid carers on what key factors to consider when assessing the time spent on unpaid care in different care settings.

The groups comprised people from three different contexts:

1. people caring for someone living in a care home.
2. People caring for someone living in a care home
3. People living with the person they care for

The study has ethical approval in the United Kingdom and was submitted to the Matia-Hurkoa Ethics Committee, respecting all rights and obligations established in the various international agreements for social studies and in accordance with European and national data protection legislation, with participants remaining anonymous for the analysis.

Analysis.

A qualitative discourse analysis will be carried out based on the transcripts of the focus group recordings. Participants’ views will be categorised to conduct a comparative analysis of the advantages and disadvantages identified in their assessments of the different tools.

This study aims to identify key characteristics for the assessment of care from the participants’ perspective in the Welsh and Basque contexts, seeking to establish a common knowledge base to enable further studies in the future.