Issues with the measurement of informal care in social surveys: evidence from the English Longitudinal Study of Ageing

Abstract

Informal care plays a significant role in the care system for older people in the United Kingdom, and this is projected to increase considerably in the next three decades as the population ages. Understanding these trends requires a good quality measurement of informal care. In this study, we compare care-givers’ responses to different informal care questions from the English Longitudinal Study of Ageing (ELSA) to investigate the influence of question design on the self-reporting of informal care. We also analyse spousal care dyads in order to model discrepancies in the reporting of care provision between spouses to provide an insight into the reliability of informal care measurements. We find that the most common measures used are likely to be under-estimating both the scale and scope of informal care, and we recommend careful consideration of the content of informal care survey questions in order to operationalise the measures of informal care activities.

Positive and Negative Impacts of Caring among Adolescents Caring for Grandparents. Results from an Online Survey in Six European Countries and Implications for Future Research, Policy and Practice

“…In light of the paucity of literature focusing on this particular group of AYCs, we referred to research on YCs. Even in this case however, studies remain relatively scarce, especially in continental Europe, partly because of the low level of self-recognition of YCs [ 9 , 10 ]. Moreover, the lack of consistency, regarding the definitions of YCs across the different studies, makes it difficult to carry out research with, and formally identify, YCs [ 7 , 11 , 12 ].…”

The Challenges of Measuring Informal Care Time: A Review of the Literature

“…The most [43,[45][46][47]49], followed by the Netherlands (n = 4) [29,42,52,58], shown in Table 3. Included studies most often sampled care recipients with dementia (n = 11) [22, 44, 46, 48-51, 53, 54, 59, 60], recipients who had suffered a stroke (n = 5) [29,40,43,45,56] and recipients without a specified health condition (n = 5) [39,42,52,55,58]. The recall method to obtain caregiving information was used in all but two studies, which either used the time diary method [42] or did not specify the method [22].…”

“…Compare provider and recipient declarations of caregiving [55] Multiple caregivers Whether to collect information of further caregivers Underestimation of total care time to a recipient Obtain information from a non-primary caregiver [50,51] Whether to use the primary or non-primary caregiver to collect information on all caregivers Aggregation of informal care tasks Whether to collect a global or task-based measure of caregiving time Total time using one aggregated tasks question underestimated relative to separate tasks Compare aggregated and separated tasks questions [58] Non-response bias Whether certain groups of carers are less likely to take part in surveys…”

“…Two studies explored the degree to which this issue occurred, one that compared discrepancy between provider and recipient reports [55] and another that compared the identification of providers between a diary and recall questionnaire [39]. The former considered spouses over 50 years old from the English Longitudinal Study of Ageing and found that among 799 reports of care receipt, only 420 (52.6%) of these claims were confirmed by the nominated provider.…”

Italian Adolescent Young Caregivers of Grandparents: Difficulties Experienced and Support Needed in Intergenerational Caregiving—Qualitative Findings from a European Union Funded Project

“…Further, there is a lack of consistency regarding the definition of AYCs [ 8 , 9 , 10 ] across the available studies. Moreover, carrying out research on AYCs is challenging especially because of young people’s low level of self-recognition that makes it difficult for them to be identified and to be enrolled in projects and interventions [ 11 , 12 ].…”