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

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.

Health literacy of caregivers of adult care recipients: A systematic scoping review

“…As caregivers are not the primary recipients of healthcare, they may already experience a number of challenges when seeking health information and engaging with health services (Yuen et al . ), including fewer opportunities to communicate with, and lack of recognition from, healthcare providers (Dolce , Williams & Bakitas ). It is unclear the extent to which low health literacy among caregivers contributes to their unmet information needs, and further, how and whether it relates to caregiver burden, stress and depression.…”

“…While unmet needs, including needs for information, in caregivers across various care recipient populations has been associated with increased burden (Stirling et al 2010), stress (Molassiotis et al 2011) and depression (Armoogum et al 2013), to date, few studies have examined the relationship between health literacy, unmet information needs and caregiver health outcomes. As caregivers are not the primary recipients of healthcare, they may already experience a number of challenges when seeking health information and engaging with health services (Yuen et al 2014), including fewer opportunities to communicate with, and lack of recognition from, healthcare providers (Dolce 2011, Williams & Bakitas 2012. It is unclear the extent to which low health literacy among caregivers contributes to their unmet information needs, and further, how and whether it relates to caregiver burden, stress and depression.…”

“…Health literacy is considered a multidimensional construct comprised of individual capacities, interpersonal elements as well as broader health system, and community factors (Yuen et al . ). Low health literacy among people with chronic health conditions has been associated with poorer disease self‐management (Zhang et al .…”

“…Health literacy is broadly defined, and operationalised in the current review, as the personal characteristics and social resources that enable an individual to access, understand, appraise, and use information and services to participate in decisions related to their health (WHO, 1998, Sorensen et al 2012. Health literacy is considered a multidimensional construct comprised of individual capacities, interpersonal elements as well as broader health system, and community factors (Yuen et al 2014). Low health literacy among people with chronic health conditions has been associated with poorer disease selfmanagement (Zhang et al 2014), poorer health outcomes (Berkman et al 2011b), reduced psychological well-being (Song et al 2012), increased health service use (Mitchell et al 2012) and among elderly people, increased mortality (Bostock & Steptoe 2012).…”

Measuring cancer caregiver health literacy: Validation of the Health Literacy of Caregivers Scale-Cancer (HLCS-C) in an Australian population

“…This approach has been used to guide the generation of the Health Literacy Questionnaire (Osborne, Batterham, Elsworth, Hawkins, & Buchbinder, 2013), a validated measure of health literacy that has shown utility in both determining an individual's health literacy skills and needs, and in the development of interventions to address these needs. Where proposed domains for the HLCS-C were similar to domains included in the HLQ (Osborne et al, 2013), the HLQ domain names and items were used as a basis, and revised for the cancer caregiver audience (Yuen et al, 2014).…”