Caregiver Knowledge and Skills

Sherwood, Paula R.; Given, Barbara; Given, Charles W.

doi:10.1002/9781118312513.ch28

Cited by 3 publications

(1 citation statement)

References 55 publications

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“…A cancer diagnosis has a significant, and often long‐lasting impact on an individual, as well as on their family and friends. Depending on the diagnosis and illness severity, family members or friends may be involved in the provision of direct care, management of medications, monitoring of symptoms, and the provision of emotional and social support (Sherwood & Given, ; Wolff & Roter, ). Often referred to as caregivers, support persons also often provide informational support by sourcing health information, participating in health decision‐making, assisting care recipients to navigate the healthcare system, and facilitating information exchange between care recipients and healthcare providers (HCP) (Eggly, Penner, Greene, & Harper, ; Laidsaar‐Powell, Butow, Bu, & Charles, ).…”

Section: Introductionmentioning

confidence: 99%

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

Yuen

Knight

Dodson

et al. 2017

Health Soc Care Community

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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.

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Section: Introductionmentioning

confidence: 99%

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

Yuen

Knight

Dodson

et al. 2017

Health Soc Care Community

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Development of Web-Based Education Modules to Improve Carer Engagement in Cancer Care: Design and User Experience Evaluation of the e-Triadic Oncology (eTRIO) Modules for Clinicians, Patients, and Carers

Laidsaar-Powell,

Giunta,

Butow

et al. 2024

JMIR Med Educ

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Background Carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill‐equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers. Objective To facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadic Oncology [eTRIO]), patients with cancer, and carers (eTRIO for Patients and Carers [eTRIO‐pc]). These were designed to improve carer involvement, communication, and shared decision-making in the cancer management setting. Methods The eTRIO education modules were based on extensive research, including systematic reviews, qualitative interviews, and consultation analyses. Guided by the person-based approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n=13) and consumers (n=5); content and design were continuously and iteratively refined. User experience testing (including “think-aloud” interviews and administration of the System Usability Scale [SUS]) of the modules was completed by additional clinicians (n=5), patients (n=3), and carers (n=3). Results The final clinician module comprises 14 sections, requires approximately 1.5 to 2 hours to complete, and covers topics such as carer-inclusive communication and practices; supporting carer needs; and managing carer dominance, anger, and conflicting patient-carer wishes. The usability of the module was rated by 5 clinicians, with a mean SUS score of 75 (SD 5.3), which is interpreted as good. Clinicians often desired information in a concise format, divided into small “snackable” sections that could be easily recommenced if they were interrupted. The carer module features 11 sections; requires approximately 1.5 hours to complete; and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections and requiring 1 hour to complete. The average SUS score as rated by 6 patients and carers was 78 (SD 16.2), which is interpreted as good. Interactive activities, clinical vignette videos, and reflective learning exercises are incorporated into all modules. Patient and carer consumer advisers advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface. Conclusions The eTRIO suite of modules were rigorously developed using a person-based design methodology to meet the unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care.

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Development of Web-Based Education Modules to Improve Carer Engagement in Cancer Care: Design and User Experience Evaluation of the e-Triadic Oncology (eTRIO) Modules for Clinicians, Patients, and Carers (Preprint)

Laidsaar-Powell,

Giunta,

Butow

et al. 2023

Preprint

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BACKGROUND Informal carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill‐equipped to support patients. Our group published evidence‐based guidelines (the TRIO Guidelines) to improve i) oncology clinician engagement with carers and ii) management of challenging situations involving carers. OBJECTIVE To facilitate implementation of the TRIO Guidelines into clinical practice, we aimed to develop a suite of online education modules, for i) oncology clinicians (eTRIO), ii) cancer patients and iii) carers (eTRIO‐pc). These were designed to improve carer involvement, communication, and shared decision-making in the setting of cancer management. METHODS eTRIO education modules were based on extensive prior research including systematic reviews, qualitative interviews, and consultation analyses. Guided by the Person-Based Approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n = 9) and consumers (n = 5); content and design were continuously iteratively refined. User experience testing of the modules was completed by additional clinicians (n = 5), patients (n = 3) and carers (n = 3). RESULTS The final clinician module comprises 14 sections, takes approximately 1.5-2 hours to complete, and covers topics such as carer-inclusive communication and practices, supporting carer needs, and managing carer dominance, anger and conflicting patient-carer wishes. The carer module features 11 sections, taking approximately 1.5 hours to complete, and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections, taking 1 hour to complete. Interactive activities and clinical vignette videos, as well as reflective learning exercises are incorporated into all modules. During the design process we learned valuable lessons about user preferences. Clinicians often desired information in a concise format divided into small “snackable” sections that could be easily recommenced if they were interrupted. Patient and carer consumer advisors advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface. CONCLUSIONS The eTRIO suite of modules have been rigorously developed using a person-based design methodology to meet unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care. Pre-post evaluation of the effectiveness of the eTRIO modules in improving carer communication and engagement in medical consultations is currently being conducted.

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Caregiver Knowledge and Skills

Cited by 3 publications

References 55 publications

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

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

Development of Web-Based Education Modules to Improve Carer Engagement in Cancer Care: Design and User Experience Evaluation of the e-Triadic Oncology (eTRIO) Modules for Clinicians, Patients, and Carers

Development of Web-Based Education Modules to Improve Carer Engagement in Cancer Care: Design and User Experience Evaluation of the e-Triadic Oncology (eTRIO) Modules for Clinicians, Patients, and Carers (Preprint)

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