Process Utility in Care-Giving : Development of an Instrument to Measure the Caring Experience

RATIONALE: Many health and social care interventions impact on the lives of unpaid carers. If the impact is not health-related, then measures such as the QALY may not be sufficient to detect the impact. This can have implications for technology coverage decisions. An illustration is provided by the recent decision in the UK to limit the coverage of Alzheimer disease drugs. Concerns were raised that this decision was based on economic analysis that failed to take into account important benefits to carers. It is important therefore to determine what factors - besides health outcomes - influence carers' utility. OBJECTIVES: (i) Determine what people value when they provide unpaid care. (ii) Use this information to design an instrument to measure utility associated with providing unpaid care to an older person. METHODOLOGY: Items of the instrument were developed through a meta-ethnography of qualitative studies followed by semi-structured interviews with carers. 44 qualitative studies were reviewed for the meta-ethnography. These were reduced on the basis of maximum variation sampling to 6 for the final synthesis. The findings from the 6 studies were then analysed, contrasted and combined through 7 structured steps. The results of the meta-ethnography were expressed as 6 conceptual attributes (items) related to providing care. 16 semi-structured interviews were conducted with a heterogeneous group of carers. Interviews were conducted in three iterations to (i) refine the attributes (items), (ii) develop levels for the attributes (items) and (iii) check the feasibility of using a discrete choice experiment valuation exercise for the instrument. RESULTS: 6 items (each with 3 levels) were developed for use in an instrument to measure utility associated with providing care. The 6 items covered: (i) activities outside caring; (ii) support from family & friends; (iii) assistance from organisations and the government; (iv) getting-on with the recipient of care; (v) control of the caring and (vi) fulfilment from caring. CONCLUSIONS: This work qualitatively revealed a number of factors - traditionally neglected in economic evaluations - that are important to carers when they provide unpaid care. An instrument has been developed to measure the utility changes associated with providing unpaid care. Further work is needed to validate the instrument, value the 729 'caring situations' and consider how utility from providing unpaid care is most appropriately incorporated in economic evaluation