Systematic Review of Health Literacy in Childhood Cancer Patients, Survivors, and Their Caregivers

Lynn, Courtney; Quast, Lauren F; Rogers, Hannah; Effinger, Karen E.; Marchak, Jordan Gilleland

doi:10.1093/jpepsy/jsaa009

Cited by 16 publications

(11 citation statements)

References 39 publications

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“…Several studies in Western countries have revealed that a younger age at diagnosis, a lower socioeconomic status (SES) and the specific cancer type are the major factors influencing health literacy among survivors and caregivers. 12 , 13 However, these risk factors may not be generalizable to the Asian population due to differences in cultural, lifestyle and health practices. 14 To date, no study has evaluated the cancer‐specific knowledge held by survivors of childhood cancer in Hong Kong.…”

Section: Introductionmentioning

confidence: 99%

Awareness of diagnosis, treatment and risk of late effects in Chinese survivors of childhood cancer in Hong Kong

Yang

Tin

Chan

et al. 2021

Health Expectations

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Background For survivors of childhood cancer, awareness of personal health risks is a critical component of long‐term health management. Objective To evaluate the awareness of the diagnosis, treatment and risk of late effects among survivors of childhood cancer in Hong Kong. Methods Between June 2019 and March 2020, this cross‐sectional study recruited 155 adult survivors (mean age = 26.9, standard deviation [SD] = 6.4 years) and 45 parents of paediatric survivors (mean age = 11.1, SD = 3.6 years) from a long‐term follow‐up clinic. At >10 years post‐treatment (mean = 13.4, SD = 7.6 years), they completed a structured questionnaire to report their cancer‐specific knowledge. Multiple linear regression analysis was conducted to identify clinical, socioeconomic and behavioural factors associated with poor awareness. Results The majority of participants accurately recalled their diagnoses (73.5%) and major treatment modalities (chemotherapy 92.4%, radiation 82.9% and surgery 88.2%). However, less than half (45%) of the participants recognized more than 25% of the total late effects for which they were at risk. The highest levels of awareness were reported for endocrine problems (49%), neurocognitive impairment (44%) and secondary cancers (43%), and the lowest for peripheral neuropathy (21%) and vision problems (23%). Compared with survivors of haematological malignancies, those of central nervous system (CNS) tumours (standardized estimate [B] = −9.33, 95% confidence interval [95% CI]: −13.41 to −5.26) and non‐CNS solid tumours (B = −8.47, 95% CI: −12.39 to −4.94) had less knowledge about their diagnosis. Retaining medical records (P < .0001) and better medical information‐seeking habits (P = .048) were associated with better awareness. Conclusions Survivors of childhood cancer in Hong Kong have deficient awareness of their personal health risks. They may benefit from the provision of a survivorship care plan and personalized education regarding treatment‐related late effects. Patient Contribution Patients contributed in designing the study tools. Results were presented at a non‐governmental organization.

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Section: Introductionmentioning

confidence: 99%

Awareness of diagnosis, treatment and risk of late effects in Chinese survivors of childhood cancer in Hong Kong

Yang

Tin

Chan

et al. 2021

Health Expectations

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“…Sleep deprivation and stress have also been shown to affect one's ability to comprehend health information, negatively impacting health literacy (Morrison et al, 2019). Therefore, recalling the components of their child's treatment plan on an open-ended questionnaire may have presented parents with a more challenging task than required by the other key concept questions, and may have been particularly difficult for parents with low literacy, given that the new diagnosis period is known to be a stressful and emotional time (Rabineau et al, 2008).…”

Section: Discussionmentioning

confidence: 99%

“…There is currently a paucity of literature regarding how low health literacy may affect the ability of parents to learn to care for their child with cancer. Very few studies have assessed health literacy in parents of children with cancer, and among these studies, there is no standardized way that health literacy has been assessed (Lynn et al, 2020).…”

Section: Introductionmentioning

confidence: 99%

Health Literacy in Parents of Children Newly Diagnosed With Cancer and Comprehension of Key Concepts Related to Their Child's Care

Keith

Wadhwa

York

et al. 2023

Journal of Pediatric Hematology/Oncology Nursing

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Background: There is a paucity of literature regarding health literacy in pediatric oncology. We sought to understand the relationship between health literacy and comprehension of key new diagnosis education concepts in parents of children newly diagnosed with cancer. Methods: Using data from a study evaluating a structured new diagnosis discharge teaching intervention, we performed a secondary analysis to understand the relationship between parental health literacy (Brief Health Literacy Screener: BHLS) and comprehension of six key concepts (child's diagnosis, primary oncologist, and treatment plan; seeking emergent care; fever definition; re-dosing medication). We also evaluated the association between parents self-reported sociodemographic characteristics, preferred learning style (one-item ordinal assessment) and health literacy. We tested relationships using Fisher's exact tests, independent samples t-tests, and Pearson correlations. Results: Fifty parents participated (age 35.4 ± 8.2 years [ M ± SD]; 86% female; 60% non-Hispanic white; 24% with ≤high school education); nine parents (18%) scored in the BHLS low literacy range; 80% correctly responded to all six items on the key concepts questionnaire (100% comprehension). Health literacy was not significantly related to 100% comprehension or to individual key concept responses, with the exception of “child's treatment plan” (correct responses: 55.6% in low vs. 100% in adequate literacy groups; p < .001). Parental sociodemographic characteristics and preferred learning styles were not significantly related to health literacy. Discussion:Despite variability in health literacy levels, 80% of the parents comprehended all key concepts, suggesting that the intervention was effective for most parents, regardless of health literacy level.

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“…Health literacy is especially important for patients with cancer because decisionmaking for prevention, screening, and treatment in the oncology environment is complex. Since parents can directly influence the health literacy needs of children (14,19,20) and clinical outcomes of children are affected by parental health literacy, therefore, promoting health literacy is essential for this group (13).…”

Section: Introductionmentioning

confidence: 99%

“…Results of a study by Yuen et al aimed at designing a conceptual model for health literacy promotion for caregivers of patients with cancer, showed that the health literacy of caregivers is a multi-dimensional concept and includes a wide range of personal and interpersonal elements and is affected by the healthcare system and social factors (24). Other studies revealed that this group still has many ignored needs in terms of health literacy (18,20,23,25).…”

Section: Introductionmentioning

confidence: 99%

Development of a Health Literacy Program for Parents of Children with Cancer: A Mixed-Methods Study Protocol

2021

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Objectives: Parents’ health literacy plays an important role in the proper management of symptoms and providing appropriate care for their children living with cancer. However, studies conducted on health literacy in Iranian culture is very limited. Therefore, this study will identify the health literacy needs of parents of children with cancer and will design a program for promoting their health literacy. Methods: This exploratory mixed-methods study, using qualitative-quantitative methods including 4 consecutive phases. In the first phase, the literature review will be carried out to conceptualize and determine the domains of health literacy. In the second phase, a qualitative study will be conducted to identify and determine the needs and strategies for promoting the health literacy of parents using deep semi-structured interviews. Participants will be selected by purposive and snowball sampling methods and data will be analyzed using the directed content analysis method. In the third phase, participants’ needs will be prioritized using a panel of experts and the initial draft of the program will be designed. In the fourth phase, the modified Delphi method will be used to prioritize program strategies and select the final program. Discussion: Developing a program using a qualitative method and literature review can provide some evidence for promoting health literacy in parents of children living with cancer. Moreover, it is expected that this program promotes knowledge and empowerment of health team members, especially nurses to provide family-centered care for children with cancer. This, in turn, will increase the quality of provided treatment and care and will decrease the costs.

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Systematic Review of Health Literacy in Childhood Cancer Patients, Survivors, and Their Caregivers

Cited by 16 publications

References 39 publications

Awareness of diagnosis, treatment and risk of late effects in Chinese survivors of childhood cancer in Hong Kong

Awareness of diagnosis, treatment and risk of late effects in Chinese survivors of childhood cancer in Hong Kong

Health Literacy in Parents of Children Newly Diagnosed With Cancer and Comprehension of Key Concepts Related to Their Child's Care

Development of a Health Literacy Program for Parents of Children with Cancer: A Mixed-Methods Study Protocol

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