The impact of COVID-19 on cancer patients,their carers and oncology health professionals: A qualitative study

ObjectiveCancer patients, carers and oncology health professionals have been impacted by the COVID-19 pandemic in many ways, but their experiences and psychosocial responses to the pandemic are still being explored. This study aimed to document the experience of Australians living with cancer, family carers, and Oncology health professionals (HPs) when COVID-19 first emerged.MethodsIn this qualitative study, participants (cancer patients currently receiving treatment, family carers and HPs) completed a semi-structured interview exploring their experiences of COVID-19 and the impact it had on cancer care. Participants also completed the Hospital Anxiety and Depression Scale (patients) and the Depression, Anxiety and Stress Scale (carers and HPs) to assess emotional morbidity. Thematic analysis was undertaken on qualitative data.Results32 patients, 16 carers and 29 HPs participated. Qualitative analysis yielded three shared themes: fear and death anxiety, isolation, and uncertainty. For HPs, uncertainty incorporated the potential for moral distress and work-stress. Patients and carers scoring high on anxiety/depression measures were more likely to have advanced disease, expressed greater death anxiety, talked about taking more extreme precautionary measures, and felt more impacted by isolation.ConclusionCancer and COVID-19 can have compounding psychological impacts on all those receiving or giving care.Practice ImplicationsScreening for distress in patients, and burnout in HPs, is recommended. Increased compassionate access and provision of creative alternatives to face-to-face support are warrented.     

Impact of language preference and health literacy on health information-seeking experiences among a low-income,multilingual cohort

ObjectiveWe examined the impact of language preference and health literacy on health information-seeking experiences in a multilingual, low-income cohort.MethodsWe administered a modified Health Information National Trends Survey in English, Spanish, and Chinese to a sample of San Francisco city/county residents. Using multivariable logistic regression analyses, we assessed how language and health literacy impact health information-seeking experiences (confidence, effort, frustration, quality concerns, and difficulty understanding information), adjusting for age, gender, race/ethnicity, education, usual place of care, health status, information-seeking behaviors, and smartphone ownership.ResultsOf 1000 participants (487 English-speaking, 256 Spanish-speaking, 257 Chinese-speaking), 820 (82%) reported at least one negative health information-seeking experience. Chinese-language was associated with frustration (aOR = 2.56; 1.12–5.86). Difficulty understanding information was more likely in Spanish-language respondents (aOR = 3.58; 1.25–10.24). Participants with limited health literacy reported more effort (aOR = 1.97; 1.22–3.17), frustration (aOR = 2.09; 1.28–3.43), concern about quality (aOR = 2.72; 1.60–4.61), and difficulty understanding information (aOR = 2.53; 1.58–4.05). Language and literacy impacted confidence only in the interaction term between Chinese-speakers and health literacy.ConclusionWe found that negative health information-seeking experiences were common in non-English speaking populations those with limited health literacy.Practice implicationsHealth communication efforts should consider both language preference and health literacy to ensure accessibility for all patients.     

Preferences for patient-centered care among cancer survivors 5 years post-diagnosis

ObjectiveOur primary objective was to identify predictors associated with preferences for patient-centered care among cancer survivors and the association between cancer health literacy and patient-centered care preferences.MethodsCross sectional analyses of N = 345 adult cancer survivors (5 years post cancer diagnosis) attending follow-ups at University Malaya Medical Centre, Malaysia. Face-to face-interviews were conducted using the 30-item Cancer Health Literacy Test and the Patient-Practitioner Orientation Scale to determine preference for patient-centered care.ResultsCancer survivors’ preference for patient-centered care was associated with a higher cancer health literacy score, higher educational level, being employed, breast cancer diagnosis, and not desiring psychological support [F (14, 327) = 11.25, p < 0.001, R² = 0.325].ConclusionFindings from this study provide insights into preferences for patient-centered care among cancer survivors during receipt of follow-up care, which remains an understudied phase of cancer care delivery.Practice implicationsEfforts are needed to ensure different preferences for care are taken into account particularly in the setting of variable cancer health literacy.     

Information seeking behavior and perceived health literacy of family caregivers of persons living with a chronic condition. The case of spinal cord injury in Switzerland

ObjectiveTo examine the information seeking behavior and health literacy of caregivers of individuals living with spinal cord injury in Switzerland and their impact on the caregiving experience.MethodsNationwide survey of family caregivers of people with spinal cord injury (N = 717). Caregivers aged 18+ who assisted with activities of daily living were included. Self-reported information seeking behavior, including topics, preferred sources, and health literacy were assessed and analyzed.ResultsHealth professionals were the most trusted source of information. Among information-seekers, higher health literacy levels were shown to be associated with lower subjective caregiver burden and, in turn, with higher caregivers’ satisfaction with own health.ConclusionCaregivers use information on different topics and coming from different sources. In order for information to improve the caregiving experience, however, caregivers need health literacy skills to make sense of it.Practice implicationsBuilding health literacy is a promising approach to support caregivers in their activities, reduce their subjective burden, and even to improve their health. Interventions should consider involving health professionals, as the most trusted source of information, and address both health-related and more practical issues.     

Supporting health literacy using an interactive app for symptom management during radiotherapy for prostate cancer

ObjectivePatients’ ability to self-monitor symptoms and engage in self-care activities is dependent upon their level of health literacy. Health literacy and self-care ability was compared in men with prostate cancer undergoing radiotherapy that used an app for symptom management with a control group.MethodsIncluded were an intervention group (n = 66), who used an app for symptom reporting and support for self-care, and a control group (n = 64). Outcomes were Functional Health Literacy, Communicative and Critical Health Literacy and Appraisal of Self-Care Agency (ASA-A).ResultsThe intervention group had improved regarding “ability to select information needed from a variety of information sources” (p = .020), “ability to determine the information credible” (p = .041), and “being able to plan and decide what to do to improve health” (p = .004). No inter-group difference was found for ASA-A.ConclusionsWith the support of an app for reporting and managing symptoms, important advanced health literacy skills of selecting, determining, and judging information credible may improve.Practice implicationsPatients undergoing treatment for prostate cancer may benefit from an individualized approach, such as an app, for communication with health care providers and as a source of health information to make decisions about their own health.     

Collective caregivers: A novel examination of health literacy management approaches

ObjectiveHealth literacy and communication skills are necessary for family caregivers who often work in pairs, known as collective caregiving. Health literacy management is a relational process where communication between caregivers can be a barrier or pathway to improving or co-creating health literacy. The purpose of this study was to examine how collective caregivers manage health literacy.MethodsSemi-structured interviews were conducted separately for 42 caregiving pairs (n = 84). The interview guide was developed using a cancer caregiver health literacy framework. Caregiving pairs were placed into one of three collective caregiving communication patterns (absolute concordant, semi-concordant, absolute discordant). Interviews were audio-recorded, transcribed, and a thematic analysis was performed by independent coders.ResultsThe analysis revealed three different health literacy management approaches: a defined approach where caregiver roles were clearly designated (absolute concordant pairs); a contrasting approach where one caregiver was the health literacy expert (semi-concordant pairs); an independent approach characterized by individual information seeking, processing, and patient/provider engagement (absolute discordant pairs).ConclusionsHealth literacy support should address aspects of the family system such as caregiver-caregiver communication which influence variance in health literacy management.Practice implicationsOur study can inform provider communication and healthcare interventions aimed at supporting health literacy for caregivers.     

Education level, not health literacy, associated with information needs for patients with cancer

Objective

Cancer patients receiving adjuvant therapy encounter increasingly complex situations and decisions with each new procedure and therapy. To make informed decisions about care, they need to be able to access, process, and understand information. Individuals with limited health literacy may not be able to obtain or understand important information about their cancer and treatment. The rate of low health literacy has been shown to be higher among African Americans than among non-Hispanic Whites. This study examined the associations between race, health literacy, and self-reported needs for information about disease, diagnostic tests, treatments, physical care, and psychosocial resources.

Methods

Measures assessing information needs were administered to 138 newly diagnosed cancer patients. Demographics were assessed by survey and health literacy was assessed with two commonly used measures: the Rapid Estimate Adult Literacy in Medicine (REALM) and the Short Test of Health Literacy in Adults (STOFHLA).

Results

Study findings indicate that educational attainment, rather than health literacy, is a significant predictor of information needs.

Conclusion

Overcoming barriers to information needs may be less dependent on literacy considerations and more dependent on issues that divide across levels of educational attainment.

Practice implications

Oncologists and hospital staff should be attentive to the fact that many patients require additional assistance to meet their information needs.     

A systematic review of the association between health literacy and pain self-management

ObjectiveTo synthesize the impact of health literacy on pain self-management contexts, processes, and outcomes.MethodsThis systematic review employed a narrative synthesis. We used databases, including PubMed and PsycINFO, and handsearching of the reference lists to identify articles published before December 2020. Pain self-management variables were chosen based on the Individual and Family Self-Management Theory. Quality was assessed using the National Institute of Health quality assessment tool for observational and cross-sectional studies.ResultsTwenty studies that included 6173 participants were used. Most studies measured functional domains of the health literacy concept. Twelve studies reported small to large associations between health literacy and pain knowledge, medication regimen adherence, or pain. Thirteen studies considered health literacy clinical risks in tailoring education, while seven viewed it as personal assets developed via education.ConclusionsLimited information on the contribution of health literacy to pain self-management context factors and processes exists. Current evidence was limited by a lack of temporality, theoretical basis, and a priori sample estimation.Practice ImplicationsUsing brief functional literacy scales in the clinical environment can be more practical. Identifying patients’ literacy levels helps clinicians personalize education, which then promotes patients’ knowledge of pain, medication regimen adherence, and pain control.     

Unmet needs for information and psychosocial support in relation to quality of life and emotional distress: A comparison between gynecological and breast cancer patients

ObjectiveWe compared gynecological and breast cancer patients regarding their needs for information and psychosocial support, quality of life (QoL), and emotional distress and the relationship among these constructs.MethodsIn a multicenter, cross-sectional study in Germany, we evaluated 1214 female cancer patients (317 with gynecological cancer, 897 with breast cancer). We obtained self-reports of unmet needs, using a self-developed measure. We measured QoL with the EORTC QLQ-C30, symptoms of depression with the Patient Health Questionnaire (PHQ-9), and symptoms of anxiety with the Generalized Anxiety Disorder Scale (GAD-7).ResultsCompared to breast cancer patients, gynecological cancer patients felt less informed about several aspects of their disease, particularly regarding psychological support (p < 0.001), tended to have more unmet information needs, and reported lower QoL levels. Lower emotional functioning, but higher physical functioning were independent correlates of the level of unmet information needs. Depressive symptoms and higher physical functioning (only in breast cancer) were independent correlates of higher needs for psychosocial support.ConclusionCompared to breast cancer, gynecological cancer patients were less satisfied with the information received and reported lower levels of QoL.Practice implicationsBoth clinicians and policy makers should take efforts to address the higher needs of gynecological cancer patients.     

Development and pilot-testing of a colorectal cancer screening decision aid for individuals with varying health literacy levels

ObjectiveMaking an informed decision about colorectal cancer screening requires health literacy. Our aim was to develop and pilot-test a computer-based decision aid to support informed decision making about whether or not to participate in colorectal cancer screening for individuals with varying health literacy levels in the Netherlands.MethodsFirst, we designed and adapted the decision aid prototype among 25 individuals with low (n = 15) and adequate (n = 10) health literacy. Second, we used a before/after study to assess changes in knowledge, attitude, intention, decisional conflict, deliberation, anxiety and risk perception in an online survey among 81 individuals eligible for colorectal cancer screening with low (n = 35) and adequate (n = 46) health literacy.ResultsThe decision aid was acceptable, comprehensible, reduced decisional conflict, increased deliberation and improved knowledge about colorectal cancer screening, but not about colorectal cancer, among individuals with adequate and low health literacy. Usability was slightly higher for participants with adequate health literacy compared to those with low health literacy.ConclusionThe decision aid is promising in supporting informed decision making about colorectal cancer screening, also among individuals with lower health literacy.Practice implicationsFurther refinement of interactive features, such as videos, animations and the values clarification exercise, is needed to increase the usability of the decision aid.     

Accessibility of standardized information of a national colorectal cancer screening program for low health literate screening invitees: A mixed method study

ObjectiveTo explore the accessibility of standardized printed information materials of the national Dutch colorectal cancer screening program among low health literate screening invitees and to assess the effect of the information on their knowledge about colorectal cancer and the screening program.MethodsLinguistic tools were used to analyze the text and design characteristics. The accessibility, comprehensibility and relevance of the information materials were explored in interviews and in observations (n = 25). The effect of the information on knowledge was assessed in an online survey (n = 127).ResultsThe materials employed a simple text and design. However, respondents expressed problems with the amount of information, and the difference between screening and diagnostic follow-up. Knowledge significantly increased in 10 out of 16 items after reading the information but remained low for colorectal cancer risk, sensitivity of testing, and the voluntariness of colorectal cancer screening.ConclusionDespite intelligible linguistic and design characteristics, screening invitees with low health literacy had problems in accessing, comprehending and applying standard information materials on colorectal cancer screening, and lacked essential knowledge for informed decision-making about participation.Practice implicationsTo enable equal access to informed decision-making, information strategies need to be adjusted to the skills of low health literate screening invitees.     

Analyzing paths from online health information seeking to colorectal cancer screening using health literacy skills frame and cognitive mediation model

Objective

To test the hypothesized paths for Online Health Information Seeking (OHIS) behaviors in developing health literacy, leading to colorectal cancer (CRC) screening among Korean Americans (KAs) using Health Literacy Skills Frameworks (HLSF) and Cognitive Mediation Model (CMM).

Using pictures to convey health information: A systematic review and meta-analysis of the effects on patient and consumer health behaviors and outcomes

ObjectiveAssess the effect of pictorial health information on patients’ and consumers’ health behaviors and outcomes, evaluate these effects in lower health literacy populations, and examine the attributes of the interventions.MethodsWe included randomized controlled trials (RCTs) that assessed the effect of pictorial health information on patient and consumer health behaviors and outcomes. We conducted a meta-analysis of RCTs that assessed knowledge/understanding, recall, or adherence, and a subgroup analysis of those outcomes on lower health literacy populations. We narratively reviewed characteristics of pictorial health interventions that significantly improved outcomes for lower health literacy populations.ResultsFrom 4160 records, we included 54 RCTs (42 in meta-analysis). Pictorial health information moderately improved knowledge/understanding and recall overall, but largely increased knowledge/understanding for lower health literacy populations (n = 13), all with substantial heterogeneity. Icons with few words may be most helpful in conveying health information.ConclusionOur results support including pictures in health communication to improve patient knowledge. Our results should be interpreted with caution considering the significant heterogeneity of the meta-analysis outcomes.Practice implicationsFuture research should assess which types and characteristics of pictures that best convey health information and are most useful and the implementation and sustainability in healthcare contexts.Systematic Review RegistrationPROSPERO CRD42018084743.     

Decision-making support among racial and ethnic minorities diagnosed with breast or prostate cancer: A systematic review of the literature

ObjectiveTo describe the types of decision-making support interventions offered to racial and ethnic minority adults diagnosed with breast or prostate cancer and to draw any associations between these interventions and patient-reported quality of life (QoL) outcomes.MethodsWe conducted literature searches in five bibliographic databases. Studies were screened through independent review and assessed for quality. Results were analyzed using inductive qualitative methods to determine thematic commonalities and synthesized in narrative form.ResultsSearches across five databases yielded 2496 records, which were screened by title/abstract and full-text to identify 10 studies meeting inclusion criteria. The use of decision aids (DAs), trained personnel, delivery models and frameworks, and educational materials were notable decision-making support interventions. Analysis revealed six thematic areas: 1) Personalized reports; 2) Effective communication; 3) Involvement in decision-making; 4) Health literacy; 5) Social support; and 6) Feasibility in clinical setting.ConclusionEvidence suggests decision-making support interventions are associated with positive outcomes of racial and ethnic minorities with patient-reported factors like improved patient engagement, less decisional regret, higher satisfaction, improved communication, awareness of health literacy and cultural competence.Practice implicationsFuture decision-making interventions for racial and ethnic minority cancer patients should focus on social determinants of health, social support systems, and clinical outcomes like QoL and survival.     

Quality of life,health status,and health service utilization related to a new measure of health literacy: FLIGHT/VIDAS

Objective

Researchers have identified significant limitations in some currently used measures of health literacy. The purpose of this paper is to present data on the relation of health-related quality of life, health status, and health service utilization to performance on a new measure of health literacy in a nonpatient population.

Methods

The new measure was administered to 475 English- and Spanish-speaking community-dwelling volunteers along with existing measures of health literacy and assessments of health-related quality of life, health status, and healthcare service utilization. Relations among measures were assessed via correlations and health status and utilization was tested across levels of health literacy using ANCOVA models.

Results

The new health literacy measure is significantly related to existing measures of health literacy as well as to participants’ health-related quality of life. Persons with lower levels of health literacy reported more health conditions, more frequent physical symptoms, and greater healthcare service utilization.

Conclusion

The new measure of health literacy is valid and shows relations to measures of conceptually related constructs such as quality of life and health behaviors.

Practice implications

FLIGHT/VIDAS may be useful to researchers and clinicians interested in a computer administered and scored measure of health literacy.     

Application of the Health Literacy INDEX on the development of a manual for prevention of falls for older adults

ObjectiveThe Health Literacy INDEX tool has been developed for creating accessible and readable health information materials for people of all literacy levels. To increase knowledge of falls risk factors and actively engage older adults, we developed an improved manual for prevention of falls for low-health literacy older people entitled “Preventing falls-I can do it”,with the aid of INDEX.MethodsFirst time application of the INDEX tool for assessing the health literacy demands of available manuals for prevention of falls for older adults and subsequent development of an improved manual using the INDEX tool as a checklist, supported by a pretest phase involving sixteen adults ≥65, living in the community, with literacy ≤4th grade and limited functional health literacy.ResultsThe engagement of older adults from the target audience and their feedback obtained during the validation process contributed to the development of an improved health literacy- and age-friendly manual for prevention of falls.ConclusionBy offering effective health information materials, older adults can play a more active role in their health care.Practice implicationsThe manual developed to be health literacy- and age-friendly is available to be included in any multifactorial program for the prevention of falls in older adults.     

Demographic and psychosocial factors associated with limited health literacy in a community-based sample of older Black Americans

ObjectivesIndividuals with limited health literacy often experience suboptimal health outcomes. This study examined the frequency of limited health literacy and demographic and psychosocial factors associated with limited health literacy in a sample of older Black Americans.MethodsParticipants (n = 330) enrolled in a community-based intervention to promote colorectal cancer (CRC) screening completed baseline surveys assessing health literacy with the Rapid Estimate of Adult Literacy in Medicine, Revised (REALM-R) test, CRC awareness, cancer fatalism, Preventive Health Model (PHM) constructs, and demographics.ResultsApproximately 52% of participants had limited health literacy, the REALM-R score was 5.4 (SD = 2.7). Univariable correlates of limited health literacy were gender, employment, income, prior screening, cancer fatalism, CRC awareness, and PHM constructs (religious beliefs, salience/coherence, perceived susceptibility). Multivariable correlates of limited health literacy were male gender (OR = 2.3, CI = 1.4–3.8), unable to work (OR = 2.8, CI = 1.3–6.1), lower household income (OR = 3.0, CI = 1.6, 5.5), and higher PHM religious beliefs (OR = 1.1, CI = 1.0–1.2).ConclusionLimited health literacy was associated with multiple complex factors. Interventions should incorporate patient health literacy and low-literacy materials that can be delivered through multiple channels.Practice implicationsFuture studies are needed to understand the role of health literacy in an individual’s health behavior and the provision of effective healthcare.     

Low health literacy and healthcare utilization among immigrants and non-immigrants in Switzerland

ObjectiveThis study aimed at investigating the association between functional health literacy and knowledge on when to seek medical help for potentially harmless (overutilization) or serious (underutilization) situations among immigrants and non-immigrants in Switzerland.MethodsData was collected among three immigrant groups and the native population (N = 1146) in the German- and Italian-speaking part of Switzerland. Health literacy was assessed with the Short Test of Functional Health Literacy (S-TOFHLA) and three Brief Health Literacy Screeners. Over- and underutilization of healthcare services was assessed with items asking participants about when to seek medical help for minor, respectively major, physical symptoms.ResultsImmigrants were more likely to seek medical help when unwarranted (overutilization). Health literacy, when assessed with the S-TOFHLA, was significantly associated with over- and underutilization. Yet, once controlled for covariates, the association between health literacy and overutilization was negative. Immigration background and micro-cultural differences emerged as important predictors of utilization.ConclusionsResults suggest that functional health literacy is directly related to healthcare utilization. The effects might be amplified by (micro-)cultural differences.Practice implicationsHealthcare providers should be aware of differences in health literacy and utilization patterns among different population groups. Communication between patients and providers should be literacy and culturally sensitive.     

Health literacy as a predictor of emergency department visits and self-rated health among Chinese immigrants: findings from an Australian survey

ObjectivesOur objectives were to examine health literacy among first-generation Chinese immigrants living in Australia, identifying health literacy domains associated with emergency department (ED) visits and self-rated health (SRH).MethodsChinese immigrants (n = 362, mean age = 59) were recruited from communities across New South Wales and surveyed for health literacy, ED visits in the past 12 months, and SRH using the Health Literacy Questionnaire (simplified Chinese version).ResultsMore than 70% of participants experienced health literacy difficulties. Health literacy was significantly lower among the following participants: older, migration at older age, recent immigrants, and those without university level education or proficient English.ED visits were independently associated with the health literacy domains lacking ‘social support for health’ (OR: 1.80; p = .031) and ‘ability to appraise health information’ (OR: 2.22; p = .005). Poor SRH was associated with the health literacy domains ‘insufficient health information’ (OR: 1.81; p = .025), ‘inactively managing health’ (OR: 1.72; p = .048), and ‘lacking ability to appraise health information’ (OR: 1.70; p = .048).ConclusionsInadequate health literacy was identified in the majority of first-generation Chinese immigrants and it had significantly association with higher prevalence of ED use and poorer SRH.Practice implicationsEarly screening and support for health literacy is critical in Chinese immigrants.