Development of the Health Literacy of Caregivers Scale - Cancer (HLCS-C): item generation and content validity testing.

Eva Yn Yuen,Lina Ricciardelli,Susan Burney,Patricia M Livingston,Sarity Dodson,Tess Knight

doi:10.1186/s12875-014-0202-9

Abstract

BackgroundHealth literacy refers to an individual’s ability to engage with health information and services. Cancer caregivers play a vital role in the care of people with cancer, and their capacity to find, understand, appraise and use health information and services influences how effectively they are able to undertake this role. The aim of this study was to develop an instrument to measure health literacy of cancer caregivers.MethodContent areas for the new instrument were identified from a conceptual model of cancer caregiver health literacy. Item content was guided by statements provided by key stakeholders during consultation activities and selected to be representative across the range of cancer caregiver experiences. Content validity of items was assessed through expert review (n = 7) and cognitive interviews with caregivers (n = 16).ResultsAn initial pool of 82 items was generated across 10 domains. Two categories of response options were developed for these items: agreement with statements, and difficulty undertaking presented tasks. Expert review revealed that the majority of items were relevant and clear (Content Validity Index > 0.78). Cognitive interviews with caregivers suggested that all except three items were well understood.ConclusionA resultant 88 item questionnaire was developed to assess cancer caregiver health literacy. Further work is required to assess the construct validity and reliability of the new measure, and to remove poorly performing and redundant items, which will result in a shorter, final measure. The new measure has the potential to inform the development and evaluation of interventions and the improvement of health service delivery to cancer caregivers.

Highlights

Health literacy refers to an individual’s ability to engage with health information and services
Expert review revealed that the majority of items were relevant and clear (Content Validity Index > 0.78)
Further work is required to assess the construct validity and reliability of the new measure, and to remove poorly performing and redundant items, which will result in a shorter, final measure

Summary

Introduction

Health literacy refers to an individual’s ability to engage with health information and services. Consistent with broad definitions of health literacy [11,12,13], caregiver health literacy is defined here as the personal characteristics and social resources needed for caregivers to access, understand, appraise and use information and services to participate in decisions relating to the health and care of the care recipient. This includes the capacity to communicate, assert and enact these decisions. Whilst evidence suggests an association between poor health literacy and poorer health outcomes [14], worse physical functioning and reduced quality of life [14,15,16,17,18], little is understood about the relationship between caregiver health literacy and the health outcomes of care recipients

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