Aims   Caregivers provide extensive and multifaceted support for people with cancer. While it is important they have sufficient knowledge and skills to provide optimal care, few measures are currently available to assess a caregiver’s capacity to find, understand and use health information for optimal care provision. The aim of this study is to describe the development and pre-testing of an instrument designed to measure cancer caregiver health literacy.

Methods         Domains for the measure were identified using a conceptual framework of caregiver health literacy. Items for the measure were developed from statements provided by participants of concept mapping workshops (people with cancer [n = 13], caregivers [n = 13], healthcare providers or policymakers [n = 11]). Content validity of items was assessed through expert ratings (n = 8) cognitive interviews with caregivers recruited through Carers Victoria (n = 16).

Results            Eighty-two items were initially generated across 10 domains, each corresponding to one of two response options: ‘agree/disagree’; or ‘difficulty in undertaking tasks’. An item writing criterion was used to ensure items were comprehensible to caregivers with a range of literacy capacities and were relevant to them across the disease continuum. Expert review suggested that the majority of items were relevant and clear (Content Validity Index [CVI] > 0.75). Cognitive interviews with caregivers revealed that most items were well understood. Minor revisions were made to improve item clarity and ensure domains were adequately covered: three items were deleted, 19 items were modified, and 9 items were added.

Conclusions    The final measure of caregiver health literacy contains 88 items. The new measure could be used to identify the health literacy needs and strengths of caregivers, and support the evaluation of interventions, information resources and healthcare services.