Presentation (CTI)

OBJECTIVES: Understanding the impact of illness on caregivers and families is increasingly recognised as an important component of patient experience research. However, eligibility criteria for caregiver participants vary across studies and caregiver definitions are not always clearly reported. This targeted literature review aimed to understand how caregivers are defined in research studies and report the commonly used definition criteria.
METHODS: A targeted literature review was conducted in MEDLINE and PsycINFO to identify qualitative caregiver experience studies published between 2021 and 2026. Articles were eligible if they reported primary qualitative research (based in Canada, US, UK, Europe, Australia, and New Zealand), involving adult caregivers of adult patients with chronic conditions and excluded if they focused on paid caregivers or caregivers of older adults without a specified diagnosis. Where provided, definitions or eligibility criteria for caregiver study participants were extracted from publications.
RESULTS: Of the 600 eligible articles identified, n=278 (46%) provided a definition or listed eligibility criteria, across 27 therapeutic areas. 14 definition components were identified. Common components included the caregiver’s relationship to the patient, informal/unpaid status, and whether they were the primary caregiver. Other components related to the timing, frequency, duration and type of care provided; cohabitation status; closeness or relationship duration; legal/decision-making authority; and whether the caregiver, patient or healthcare professional identified the individual as a caregiver. Caregiver definitions included a mean of 2.3 (SD 1.2) components. The use of published standardised definitions of a caregiver were limited.
CONCLUSIONS: This study identified commonly used eligibility criteria that can be considered by researchers to inform the definition of caregiver populations in caregiver experience research. The findings also highlight the need for clear, consistent defining of caregiver eligibility criteria during study design. This allows readers to assess applicability of results to their own population of interest, as well as the comparability across studies and publications.