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What Is an Informal Carer: A Non-systematic Literature Review of Definitions and Characteristics

par Rakofsky, Carine ;Vanhoutte, Bram ;Mahieu, Céline
Organisme financeur Partenamut
Publication Non publié, 2026-09-30

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Résumé :

Informal carers play an increasingly important role in modern healthcare systems. However, the concept of an ‘informal carer’ is still defined in a variety of ways. This working paper examines how informal carers are defined in qualitative and quantitative studies, and compares these definitions with those found in Belgian legislation and within informal carer organisations. Based on a non-systematic review of the literature, the analysis is structured around two theoretical frameworks: the socialisation of care and the ethics of care.We first analyse seven definitions of informal caregivers used in the literature and highlights substantial variation across key criteria, including remuneration, professional status, relationship to the care recipient, duration and intensity of care, and types of support provided. Next, the study examines how informal carers are identified in seven surveys frequently used in quantitative research, highlighting differences in survey questions regarding the frequency, intensity and types of care provided. Finally, the analysis examines the definition of informal carers in Belgian legislation and those used by carer associations.The comparison shows that definitions of informal carers vary across the literature and reflect a range of perspectives that differ in their proximity to the socialisation of care and the ethics of care.