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Proxy responses to ICECAP-A: Exploring variation across multiple proxy assessments of capability well-being for the same individuals.

ABSTRACT: BACKGROUND:The ICECAP capability measures are increasingly being used to capture the impact of health and social care interventions on well-being. In cases where the recipient of an intervention is highly vulnerable, proxy completion may be necessary. This study adds to the limited existing evidence on proxy completion of ICECAP-A specifically and adopts the novel approach of investigating multiple proxy responses for the same four (hypothetical) individuals. METHODS:62 members of the public who were participating in a series of one day deliberative workshops on public health and social care completed ICECAP-A on behalf of four hypothetical individuals, described in vignettes. Quantitative analysis explored the range of proxy responses for each of the four hypothetical individuals, and any possible correlation between participants' own characteristics and their proxy responses. Participants discussed their proxy responses after completing the task; this discussion was audio recorded and analysed using Framework Analysis. RESULTS:Wide variation in ICECAP-A scores was observed across proxy respondents for each hypothetical individual. Participants' demographic characteristics and own well-being do not appear to have systematically influenced proxy responses. Qualitative analysis suggests two principal approaches (or perspectives) were adopted by participants: Empathetic (adopting the perspective of the 'subject') and factual (a factual assessment of the subject's well-being). Participants also drew on their own experiences to varying degrees. There were differing interpretations of the Independence attribute on ICECAP-A and some evidence that participants' ideas of what constituted achievement were context (including life-stage and condition/health) specific. CONCLUSIONS:The factual versus empathetic approaches identified from qualitative analysis in this study match to the concept of a proxy-proxy versus proxy-patient perspective, previously outlined in the literature. Researchers should consider specifying which perspective proxy raters should adopt. Findings also suggest proxy responses can be influenced by external points of reference and interpretation of measure attributes.

SUBMITTER: Kinghorn P

PROVIDER: S-EPMC7386591 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Proxy responses to ICECAP-A: Exploring variation across multiple proxy assessments of capability well-being for the same individuals.

Kinghorn Philip P Afentou Nafsika N

PloS one 20200728 7

<h4>Background</h4>The ICECAP capability measures are increasingly being used to capture the impact of health and social care interventions on well-being. In cases where the recipient of an intervention is highly vulnerable, proxy completion may be necessary. This study adds to the limited existing evidence on proxy completion of ICECAP-A specifically and adopts the novel approach of investigating multiple proxy responses for the same four (hypothetical) individuals.<h4>Methods</h4>62 members of ...[more]

PMID: 32722698

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Project description:BACKGROUND:Our aim was to explore the concepts of health and well-being from the point of view of the people experiencing them. Most of the efforts to understand these concepts have focused on disease prevention and treatment. Less is known about how individuals achieve health and well-being, and their roles in the pursuit of a good life. We hoped to identify important components of these concepts that may provide new targets and messages to strengthen existing public health programs. An improved understanding of health and well-being - or what it means to be well - can guide interventions that help people lead healthier, more fulfilling lives. METHODS:Using a grounded qualitative approach drawing from narrative inquiry, we interviewed 24 Taiwanese adults. Thematic inductive coding was employed to explore the nature of health and well-being. RESULTS:Eight constituent domains emerged regarding well-being and health. While the same domains were found for both constructs, important frequency differences were found when participants discussed health versus well-being. Physical health and lifestyle behaviors emerged as key domains for health. Disease-related comments were the most frequently mentioned sub-category within the physical health domain, along with health care use and aging-related changes. For well-being, family and finances emerged as key domains. Family appears to be a cornerstone element of well-being in this sample, with participants often describing their personal well-being as closely tied to - and often indistinguishable from - their family. Other domains included work-life, sense of self, resilience, and religion/spirituality. CONCLUSIONS:Health and well-being are complex and multifaceted constructs, with participants discussing their constituent domains in a very interconnected manner. Programs and policies intended to promote health and well-being may benefit from considering these domains as culturally-appropriate leverage points to bring about change. Additionally, while the domains identified in this study are person-centered (i.e., reflecting the personal experiences of participants), the stories that participants offered provided insights into how well-being and health are influenced by structural, societal and cultural factors. Our findings also offer an opportunity for future refinement and rethinking of existing measurement tools surrounding these constructs.

Dataset Information

Proxy responses to ICECAP-A: Exploring variation across multiple proxy assessments of capability well-being for the same individuals.

Publications

Proxy responses to ICECAP-A: Exploring variation across multiple proxy assessments of capability well-being for the same individuals.

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