Caring for Carers: Positive and Normative Challenges for Future Research on Carer Spillover Effects in Economic Evaluation

Abstract

Background Many individuals rely on family and friends to provide care outside of the formal healthcare sector. The need for caring is driven by many factors, including government policies toward health and social care, and increased prevalence of chronic and comorbid conditions. Informal care may give rise to “spillover” effects from the health of a cared-for individual to the health of carers. Spillover effects are rarely reflected in economic evaluations, in spite of growing research interest in this area, and recommendations from bodies such as the National Institute for Health and Care Excellence (NICE) and the Second Panel on Cost-Effectiveness that effects of this type be included in cost-effectiveness analysis. Objective We explore the positive and normative issues to which the inclusion of carer spillover effects in economic evaluation may give rise and how future research might begin to address these challenges. Results Positive challenges include the identification of causal rather than coincidental impacts on carers, selection into caring, and the measurement and treatment of spillover effects. The normative issues are related to these challenges, and particularly include impacts on equity, and spillovers that improve rather than reduce the health of carers. Conclusions We argue that challenges including spillover effects in economic evaluation are considerable. Avenues for future research and possible solutions to these challenges include a re-orientation of analytic perspectives so that the impacts of caring on carers are accounted for where appropriate, and the design of studies to collect robust evidence to inform debate and guidance development in this area.

Head-to-Head Comparison of the Psychometric Properties of 3 Carer-Related Preference-Based Instruments

“…Although there is a modest body of evidence on the feasibility, validity, and reliability of the ASCOT-Carer, CarerQol, and CES carer-related preference-based instruments, more research is needed to evaluate the responsiveness of the measures to changes over time. Further, clearer guidance on how to incorporate "spillover" effects from providing informal carer in economic evaluations is needed, 77 particularly given the challenges of overlap between the health-related and carer-related instruments.…”

Measuring Carer Outcomes in an Economic Evaluation: A Content Comparison of the Adult Social Care Outcomes Toolkit for Carers, Carer Experience Scale, and Care-Related Quality of Life Using Exploratory Factor Analysis

“…This includes ethical concerns by prioritizing care for those who have informal carers and double-counting of benefits if impacts on carers' health and well-being are reflected by patients' utilities. 8,37,38 The identification of carer networks (e.g., only the primary carer or all carers involved with providing care) poses another challenge as well as general methodological challenges in incorporating spillover effects in conventional practices in economic evaluation. 39,40…”

Community nurse-paramedics’ sphere of practice in primary care; an ethnographic study

“…The CNPs were aware of some spouses’ fatigue or fear of being left at home with a frail spouse in our results. A recent study [ 37 ] discussed caring for carers and how informal care may result in a “spill over” effect when the pressure is excessively placed on the shoulders of the spouse. Our findings illuminate that the CNPs’ patient assessment is now more holistic because they have time to assess the patient and consider the strengths of the other family members or environmental risks (“...now we can check the fridge, kitchen tables, and toilet…”) before trying to find a solution.…”