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.     

Communication in the context of long-distance family caregiving: An integrated review and practical applications

Objective

Understanding how geographic distance impacts how individuals communicatively negotiate family caregiving is important for a number of reasons. Though long-distance caregiving (LDC) is a growing phenomenon with serious relational and health implications, this topic has yet to be approached from a communication perspective. In this review, LDC is thus considered as a communication context to offer caregiving scholars practical applications for contributing to this emerging research area.

Methods

Review of the literature from 1999 to 2009 that studied aspects of distance caregiving communication obtained through searching Academic Search Premier, EBSCO, Communication and Mass Media Complete, PsycArticles, PsycInfo, PubMed/Medline, and Health Source: Nursing/Academic Edition online databases.

Results

Eight published original research studies were included in the review.

Conclusion

The extent to which LDC communication is studied by caregiving researchers has the potential to provide helpful guidance for distant caregivers and care recipients to achieve successful health and relational outcomes.

Practice implications

Upon reviewing distance caregiving communication research findings, four applications are discussed: (1) defining distance as a subjective experience; (2) encouraging the use of mediated communication in LDC; and examining (3) interpersonal conflict and (4) topic avoidance processes in the LDC context.     

Understanding the impact of family caregiver cancer literacy on patient health outcomes

OBJECTIVE: Family caregivers play a significant role in the diagnosis, treatment, and recovery of individuals with cancer. This position paper reviews and links the research on family caregiving and health information with the importance of cancer literacy. METHOD: Review of literature obtained through searching in Academic Search Premier, EBSCO, Communication and Mass Media Complete, PsychArticles, PsycInfo, and Health Source: Nursing/Academic Edition library databases. RESULTS: Family members are important sources of health information, informal caregivers who learn and enact medical procedures, and influential aspects of patients' healthcare and treatment decision-making, but are not seriously considered by healthcare practitioners or researchers in terms of assessing and improving health literacy. Further, very few studies have directly examined or acknowledged the potential importance of family caregiver health literacy. CONCLUSION: The extent to which family caregivers can comprehend the health information they receive along with the patient is crucial for the patient to achieve the most successful health outcome. PRACTICE IMPLICATIONS: To acknowledge the impact that family caregiver health literacy could have on patient health outcomes, targeted practical recommendations for understanding family caregiver health literacy in the cancer context are proposed: (1) family member health literacy should be assessed; (2) close relational partners should be trained as peer health educators; (3) written cancer information should be provided directly to family caregivers; (4) health interactions between family caregivers and patients should be improved; (5) theoretical perspectives into the understanding of family caregiver health literacy should be integrated into practice; and (6) patient and family caregiver health literacy should be improved.     

Gender impact of caring on the health of caregivers of persons with dementia

BackgroundDementia is a brain syndrome that affects a growing number of persons worldwide and generates a strong and progressive demand for care from a family caregiver, usually females.ObjectiveWe aimed to describe the care provided by family caregivers of persons with dementia as well as the impact on their health and its interrelation with gender.Patient involvementThis study was carried out in collaboration with the 13 associations of family caregivers of persons with dementia that are part of a Regional Federation. This partnership worked towards bettering patient care and proposing improvements to the public health system.MethodsA multi-institutional cross-sectional study. A total of 462 primary family caregivers of persons with dementia from north-west Spain were included. Data were collected between January and April 2019 with an anonymous self-administered validated questionnaire (ICUB-97) based on Virginia Henderson’s nursing care model.ResultsThe most affected needs in family caregivers are those related to “recreational activities”, “communication” and “rest and sleep”. Statistically significant differences between male and female participants’ pattern of care and health-related impacts were found, especially in issues related to work and family reconciliation.DiscussionCare plans should be developed taking gender perspective into account. From a nurse model point of view, more research is necessary to reduce health disparities. This study provides an assessment of gender differences in care and the impact on caregivers’ health.Practical valueRegarding the specific health conditions of female caregivers and from a holistic point of view, these findings could provide novel and interesting data that might help to implement gender perspective in nursing care plans, generally invisible in routine clinical practice.     

Caregiver health literacy and adherence to a daily multi-vitamin with iron regimen in infants

Objective

To determine whether or not limited caregiver health literacy is associated with adherence to a daily multi-vitamin with iron regimen in infants.

Methods

110 caregiver/infant dyads were enrolled in a prospective study to assess the relationship between caregiver health literacy and adherence to a daily multi-vitamin with iron regimen for infants. Households were contacted biweekly over a 3-month period. Adherence was based upon caregiver report. High adherence, our primary outcome, was defined as the administration of the multi-vitamin with iron on 5–7 days over the past week.

Results

As measured by the Short Test of Functional Health Literacy in Adults (S-TOFHLA), 18% of caregivers had limited health literacy skills. Caregivers with limited health literacy skills were more likely to have higher adherence than caregivers with adequate health literacy, after adjusting for a number of possible confounding variables (AOR = 2.13; 95% 1.20–3.78).

Conclusion

Caregivers with limited health literacy were twice as likely to report high adherence to a daily multi-vitamin with iron regimen in infants as caregivers with adequate health literacy in adjusted analysis.

Practice implications

Health literacy may exert a differential influence on adherence depending upon the complexity of the desired health behavior.     

Caregiving burden and its determinants in Polish caregivers of stroke survivors

Introduction

Despite the growing body of literature on the consequences of providing non-professional care to stroke survivors, the determinants of caregiving burden are still not fully recognized. Identification of significant determinants can facilitate caregiver intervention programs. The aim of this study was to evaluate the level of burden borne by caregivers of stroke patients and to identify the most important determinants of burden at 6 months after hospitalization.

Material and methods

Data were collected from 150 pairs of stroke patients/caregivers. Caregiver burden was assessed on the Caregiver Burden scale (CB). Several characteristics were measured as potential predictors of the burden. Special attention was paid to the caregiver''s sense of coherence (SOC) and anxiety. Regression analysis was employed to test the hypothesized relationships between these variables and the burden.

Results

Forty-seven percentage of the caregivers reported a substantial burden (severe or moderate). Caregiver SOC (p < 0.001), anxiety (p < 0.001) and the patients’ functional status (p < 0.001) were the most important predictors of the overall burden and the most consistent predictors of the majority of aspects included in the CB scale. Caregiver health, patient''s gender, time spent caregiving and social support were also factors related to the burden. The identified predictors explained 67% of the variance in the overall burden.

Conclusions

Clinicians and other professionals should focus on the coping abilities of caregivers, their emotional state and the level of patients’ dependency, as these are the vital and modifiable factors affecting caregiver burden following stroke.     

Caregiver reports of physician risk counseling for adolescents with special health care needs

BackgroundResearch has indicated disagreement between physicians, caregivers, and adolescents with special health care needs regarding appropriate risk counseling.ObjectiveThe study examines caregivers’ perceptions of adolescent risk counseling. We hypothesize caregivers of adolescents with special healthcare needs will perceive a lower rate of risk counseling.MethodsData come from the 2016 National Survey of Children’s Health. The sample included 13,542 adolescents. Analysis completed using logistic regression with odds ratios.ResultsThe results indicate no difference in caregiver perceptions of risk counseling for adolescents with special healthcare needs. Gender, race/ethnicity, and relationship between caregiver and provider influenced perception of receipt of risk counseling, regardless of health status.ConclusionsAlthough adolescents with special healthcare needs perceive their risk behavior counseling to be lacking in quantity/quality, caregivers perceive such counseling does occur. These results highlight the need for comprehensive risk counseling for groups at risk of known health disparities.Practice implicationsPhysicians and providers should be provided with the training and resources needed to be comfortable to engage in risk counseling. Adolescents need the opportunity to see their provider privately, and education to advocate for information risky behaviors. Parents, providers, and adolescents should be included in future risk counseling intervention plans.     

Enhancing the design and utilization of asthma action plans through community-based participatory research in an urban African American community

BackgroundAcross the U.S., large inequities in asthma prevalence and outcomes persist, disproportionately affecting low-income, minoritized children. West Louisville is particularly impacted by these inequities due to a complex interplay of socioeconomic, historical, and industrial processes. Additionally, low health literacy and mistrust in healthcare exacerbate poor asthma self-management.ObjectiveTo engage community members and health professionals to address childhood asthma management in a marginalized community experiencing significant health inequities.Patient InvolvementAlthough prior asthma knowledge was not required, the majority of our community advisory council (CAC) members either had asthma or cared for children/grandchildren with asthma. Through facilitated decision-making using the Boot Camp Translation approach, the CAC chose to focus on improving asthma self-management in their community through enhancing the design and utilization of asthma action plans (AAPs).MethodsUpon adding inhaler images to a user-friendly AAP, the CAC developed and implemented a provider incentive program and a health communication campaign to promote the Tool’s utilization. Evaluation of the intervention consisted of a short questionnaire measuring relevant patient demographics and campaign knowledge, and phone interviews with providers to gather feedback on the incentive and Tool design.ResultsOver the short two-month intervention, a total of 8 practices with 28 providers used 153 Tools to provide asthma self-management counseling. The majority of providers preferred the enhanced Tool to other AAPs they had used. Inhaler images facilitating improved communication regarding asthma medications.DiscussionUsing a participatory approach, a community preferred intervention targeting barriers to effective asthma control increased provider utilization and community awareness of AAPs and bridged a communication gap between patients and providers.Practical ValueLeveraging community members’ (including patients/caregivers) and health professionals’ expertise led to the development of an enhanced patient-education tool and an effective provider incentive program with the potential to improve childhood asthma management in marginalized populations.     

Facilitating Out-of-Home Caregiving Through Health Information Technology: Survey of Informal Caregivers’ Current Practices,Interests, and Perceived Barriers

Background

Many patients with chronic conditions are supported by out-of-home informal caregivers—family members, friends, and other individuals who provide care and support without pay—who, if armed with effective consumer health information technology, could inexpensively facilitate their care.

Objective

We sought to understand caregivers’ use of, interest in, and perceived barriers to health information technology for out-of-home caregiving.

Methods

We conducted 2 sequential Web-based surveys with a national sample of individuals who provide out-of-home caregiving to an adult family member or friend with a chronic illness. We queried respondents about their use of health information technology for out-of-home caregiving and used multivariable regression to investigate caregiver and care-recipient characteristics associated with caregivers’ technology use for caregiving.

Results

Among 316 out-of-home caregiver respondents, 34.5% (109/316) reported using health information technology for caregiving activities. The likelihood of a caregiver using technology increased significantly with intensity of caregiving (as measured by number of out-of-home caregiving activities). Compared with very low intensity caregivers, the adjusted odds ratio (OR) of technology use was 1.88 (95% CI 1.01-3.50) for low intensity caregivers, 2.39 (95% CI 1.11-5.15) for moderate intensity caregivers, and 3.70 (95% CI 1.62-8.45) for high intensity caregivers. Over 70% (149/207) of technology nonusers reported interest in using technology in the future to support caregiving. The most commonly cited barriers to technology use for caregiving were health system privacy rules that restrict access to care-recipients’ health information and lack of familiarity with programs or websites that facilitate out-of-home caregiving.

Conclusions

Health information technology use for out-of-home caregiving is common, especially among individuals who provide more intense caregiving. Health care systems can address the mismatch between caregivers’ interest in and use of technology by modifying privacy policies that impede information exchange.     

Health literacy and cancer communication with older adults

OBJECTIVE: The physiological, cognitive, language and communicative changes that take place as we enter into old age have become quite well documented within the social scientific literature. Many of these changes lead in some way to a lessening of previous interactive abilities and competencies. The new mantra for gerontologists attempting to help older adults compensate for these potential losses is to develop strategies to maintain existing abilities as long as possible. METHODS: A literature review using online databases was performed. RESULTS: Older adults who are diagnosed with cancer or help care for an individual coping with cancer must confront a health care system that demands a high level of health literacy to successfully manage the disease. Older adults may be at a distinct disadvantage in their ability to successfully cope with cancer because of age-related physiological, cognitive, psychological and communicative factors. CONCLUSION: This paper highlights the relevant research findings and theoretical positioning that points not only to possible pragmatic dilemmas faced by those adapting to cancer but also highlights streams of research that scholars may wish to focus upon to better understand how older adults and their formal and informal caregivers can improve their cancer health literacy. PRACTICE IMPLICATIONS: Providers, patients, and caregivers must all participate in creating a health care environment of shared meaning and understanding of health messages tailored to the aging patient diagnosed with cancer. Health communication scholars have various theoretical, methodological, and pragmatic communication-based approaches that provide important contributions to the complexities of caring for the aging patient.     

Online resources for family caregivers of cognitively competent patients: A review of user-driven reputable health website content on caregiver communication with health professionals

ObjectiveMost patients want their family involved in consultations and decisions, however some family caregivers report feeling overwhelmed and unsure of their role. As caregivers are increasingly looking to medical websites for guidance, this study aimed to review reputable web-resources available to inform family caregivers on how to be involved in medical consultations and decisions.MethodsGoogle searches were performed using lay search strings, to imitate how a cancer caregiver may locate information. Relevant webpages were included if they were directed at caregivers and from a reputable health organisation. Qualitative content analyses were performed on the included webpages.Results22 webpages were included and 8 were directed at caregivers of cancer patients. Six key categories of information were identified: preparing for consultations, helping during consultations, advocating for the patient, decision-making, communicating in hospital settings, and communicating with family and friends.ConclusionA range of online resources were found to guide family caregivers, particularly cancer caregivers, on involvement in consultations. However, few provided information to caregivers on complex situations such as treatment decision-making, advocating for patient’s needs, and communicating in a hospital setting.Practice implicationsClinicians can actively refer family caregivers to online resources that support caregiver communication in medical settings.     

Self-reported physical and mental health of older adults: the roles of caregiving and resources

Objectives

This study examined factors associated with self-reported physical and mental health, focusing on caregiving status and the availability of social supports and financial resources.

Methods

Two bivariate analyses were performed to examine the sociodemographic characteristics as well as perceived health outcomes among caregiving and non-caregiving participants. Two-equation probit models were used to determine independent predictors of self-reported physical and mental health, using data from 1071 community-based adults (≥60 years). An additional bivariate analysis was conducted to investigate the characteristics of caregivers who reported better physical health.

Results

Approximately 17% (n = 183) of respondents reported being caregivers, and those in caregiving roles tended to be ethnic minorities, married, and have telephone communication with family or friends on a daily basis. Better physical and mental health outcomes were common for caregivers and non-caregivers who reported having more resources (e.g., higher income, better preparedness for future financial need, higher satisfaction with transportation and housing, and no limitation of usual daily activities). However, sociodemographic and social support factors were not significantly associated with physical and mental health among caregivers, unlike their non-caregiver counterparts. In the probit model, caregivers were more likely to be physically healthy compared to non-caregivers (Coefficient = 0.34; p-value = 0.031). Compared with healthy non-caregivers (n = 631), healthy caregivers (n = 141) tended to be ethnic minorities, married, and have telephone communication with family or friends on a daily basis.

Conclusions

Findings suggest that preparing resources and maintaining strong social support systems may foster health status among older family caregivers.     

Understanding cancer caregiver burden over time: Dyadic assessments of family cohesion,conflict and communication

ObjectivePreviously we identified three distinct cancer communication concordance groups among cancer patient-caregiver dyads. This secondary analysis examined patient and caregiver reports of family functioning (cohesion and conflict) as associated with cancer communication concordance and assessed each as independent predictors of perceived caregiver burden among hematological cancer caregivers.MethodsA case series of hematological cancer patient-caregiver dyads (n = 171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Using the previously identified communication groups this analysis prospectively examines patient and caregiver perceptions of family cohesion and conflict and the association with burden over time.ResultsCaregiver burden decreased over time. Caregiver, but not patient perceptions of family cohesion decreased over time; decreased cohesion and increased conflict was associated with greater cancer communication discordance.ConclusionsThis work lends further support to the use of cancer communication congruence typologies for identifying potentially vulnerable dyads. Discordant cancer communication and declining caregiver perceptions of family cohesion may represent opportunities to intervene using family focused supportive services.Practice implicationsOnly caregiver perceptions of family functioning were associated with burden therefore identifying and supporting those caregivers with worsening communication and family function is important.     

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.     

A systematic review of interventions for family caregivers who care for patients with advanced cancer at home

ObjectiveTo examine the characteristics of interventions to support family caregivers of patients with advanced cancer.MethodsFive databases (CINAHL, Medline, PsycINFO, Web of Science, and the Cochrane Library) were searched for English language articles of intervention studies utilizing randomized controlled trials or quasi-experimental designs, reporting caregiver-related outcomes of interventions for family caregivers caring for patients with advanced cancer at home.ResultsA total of 11 studies met the inclusion criteria. Based on these studies, the types of interventions were categorized into psychosocial, educational, or both. The characteristics of interventions varied. Most interventions demonstrated statistically significant results of reducing psychological distress and caregiving burden and improving quality of life, self-efficacy, and competence for caregiving. However, there was inconsistency in the use of measures.ConclusionsMost studies showed positive effects of the interventions on caregiver-specific outcomes, yet direct comparisons of the effectiveness were limited. There is a lack of research aimed to support family caregivers’ physical health.Practice implicationsGiven caregivers’ needs to maintain their wellbeing and the positive effects of support for them, research examining long-term efficacy of interventions and measuring objective health outcomes with rigorous quality of studies is still needed for better outcomes for family caregivers of patients with advanced cancer.     

Exploring caregiver understanding of medications immediately after a pediatric primary care visit

Objective

Assess accuracy of caregiver understanding of children's prescribed medications and examine factors associated with accurate recall.

Methods

Cross-sectional, observational study of English- or Spanish-speaking caregivers of primary care patients aged 0–7 years. Child and visit characteristics and caregiver health literacy (Short Test of Health Literacy in Adults) were assessed. Post-visit, caregivers completed questionnaires on medications prescribed. Caregiver and medical record agreement on medication name and administration (dose and frequency) were examined using chi square and logistic regression.

Results

Analyses included 68 caregivers (28% low health literacy); 96% of children had public insurance. Caregivers indicated that the doctor provided clear medication information (100%) and they could follow instructions (98%). 101 medicines were prescribed; 6 were recalled by caregiver only. 71% of medications were accurately named; 37% of administration instructions were accurately recalled. Accurate naming was more often found for patients 3–7 years, without conditions requiring repeat visits, and new medications. Accurate administration responses were associated with having only 1 child at the visit.

Conclusion

Unperceived medication instruction understanding gaps exist at physician visits for caregivers of all literacy levels. Communication and care delivery practices need further evaluation.

Practice implications

Clinicians should be aware of the frequency of caregiver medication misunderstanding.