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

Abstract

Caregivers have been largely neglected in health literacy measurement. We assess the construct validity, and internal consistency of the Health Literacy of Caregivers Scale-Cancer (HLCS-C), and present a revised, psychometrically robust scale. Using data from 297 cancer caregivers (12.4% response rate) recruited from Melbourne, Australia between January-July 2014, confirmatory factor analysis (CFA) was conducted to evaluate the HLCS-C's proposed factor structure. Items were evaluated for: item difficulty, unidimensionality and overall item fit within their domain. Item-threshold-ordering was examined though one-parameter Item Response Theory models. Internal consistency was assessed using Raykov's reliability coefficient. CFA results identified 42 poorly performing/redundant items which were subsequently removed. A 10-factor model was fitted to 46 acceptable items with no correlated residuals or factor cross-loadings accepted. Adequate fit was revealed (χ = 1463.807[df = 944], p < .001, RMSEA = 0.043, CFI = 0.980, TLI = 0.978, WRMR = 1.00). Ten domains were identified: Proactivity and determination to seek information; Adequate information about cancer and cancer management; Supported by healthcare providers (HCP) to understand information; Social support; Cancer-related communication with the care recipient (CR); Understanding CR needs and preferences; Self-care; Understanding the healthcare system; Capacity to process health information; and Active engagement with HCP. Internal consistency was adequate across domains (0.78-0.92). The revised HLCS-C demonstrated good structural, convergent, and discriminant validity, and high internal consistency. The scale may be useful for the development and evaluation of caregiver interventions.

Variation in health literacy among family caregiver communication types

“…Reflecting previous findings about social support, caregiver outcomes, and burden, self‐care was lowest for the carrier, lone, and manager caregivers, which corresponds to their lack of social support, stress relief, and open communication with family. Caregivers who report a low self‐care score do not prioritize their own well‐being and find ways to cope with their role as a caregiver . The carrier was lowest in getting rest, seeing a doctor, and exercise, suggesting that this caregiver type is at greatest risk for poor health outcomes.…”

“…Caregivers who report a low self-care score do not prioritize their own well-being and find ways to cope with their role as a caregiver. 26 The carrier was lowest in getting rest, seeing a doctor, and exercise, suggesting that this caregiver type is at greatest risk for poor health outcomes.…”

“…The HLCS‐C is a self‐reporting instrument measuring 10 cancer caregiver health literacy domains . For the current study, caregivers completed the subscales for six domains most relevant to information and support seeking: (a) proactivity and determination to seek information, (b) adequate information about cancer and cancer management, (c) social support, (d) cancer‐related communication with the care recipient, (e) self‐care, and (f) understanding the health care system.…”

“…For the current study, caregivers completed the subscales for six domains most relevant to information and support seeking: (a) proactivity and determination to seek information, (b) adequate information about cancer and cancer management, (c) social support, (d) cancer‐related communication with the care recipient, (e) self‐care, and (f) understanding the health care system. Yuen et al demonstrated adequate psychometric properties and internal consistency across domain subscales (0.78‐0.92) . On a 4‐point Likert scale, caregivers indicate the extent of agreement for caregiving‐specific health literacy needs (strongly agree to strongly disagree).…”

“…The HLCS-C is a self-reporting instrument measuring 10 cancer caregiver health literacy domains. 26 For the current study, caregivers completed the subscales for six domains most relevant to information and support seeking: (a) proactivity and determination to seek information, Items were coded such that higher mean scores reflect a higher health literacy level within a specific domain, indicating fewer health literacy needs within that domain. (Table 2).…”