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.     

Older adults with chronic illness – Caregiver burden in the Asian context: A systematic review

IntroductionUpsurge in life expectancy, filial responsibility of caring, and healthcare advances have increased the older adult population in Asia. The last decade has witnessed nuclear families' proliferation in Asia, leaving family caregivers with more accountability and responsibility. This review explores the pattern of caregiver burden among caregivers of older adults with chronic illness in Asia.MethodsPRISMA guidelines serves as the framework for this systematic review. Studies from selected databases assessed caregivers' physical state, psychological dysfunction, and or burden as an outcome measure. The Newcastle - Ottawa Quality Assessment Scale appraised the quality of the selected studies.ResultsThe review included 12 research articles. Caregivers consistently report mild to a moderate burden. Care recipient with functional dependency, comorbidities, memory, and sleep impairments, escalate caregiver burden. Caregiver variables intensifying burden were advancing age, male gender, spouse as a care recipient, longer care provision duration, and no assistance.ConclusionOptimal levels of emotional well-being, significant family/social support, and self-preparedness among caregivers are grounds for their empowerment.Practical ImplicationsA paradigm shift from 'caregiver burden' to 'caregiver resilience' is advocated. Routine screening, preventive measures (skill-building and psychosocial empowerment), and restorative services (respite care and problem-based home visiting) for caregivers are forecasted.     

A scoping review of consumer needs for cancer information

ObjectiveThis study was a scoping review of research on cancer-related health information seeking and needs of patients, survivor, non-patients, and caregivers.MethodsThis study used the COSI model to search for articles published from 2007 to 2017.ResultsIn total, 117 articles with titles and abstracts including the following terms were selected: cancer, health, information, seeking. Non-patients obtained information from the Internet, doctors, and media, whereas patients obtained information from doctors, the Internet, and media. Information needs were the highest for treatment, prognosis, and psychosocial support. Patients had the highest need for information on prognosis and treatment, whereas non-patients had the highest need for general cancer information, prevention, and cancer examination. Caregivers sought information about treatment, psychosocial support, and prevention.ConclusionThis study revealed an increase in the number of research articles identifying cancer patients’ information needs. Cancer patients rely on health professionals for information; thus, relevant materials are needed. Furthermore, not only medical but also psychosocial support information is needed.Practice implicationsThere is a need for cancer information from health professionals, and thus for patient-centered training materials. Furthermore, a survey system to evaluate consumers’ cancer information needs should be developed.     

Health literacy,multimorbidity, and patient-perceived treatment burden in individuals with cardiovascular disease. A Danish population-based study

ObjectiveThe aim was to investigate the association between: 1) multimorbidity and high treatment burden 2) health literacy and high treatment burden, and 3) the interaction between multimorbidity and health literacy in relation to high treatment burden.MethodsWe included respondents with cardiovascular disease who participated in a Danish population-based survey from 2017 (N = 2,111). Logistic regression analyses were used to study associations.ResultsThe study showed that multimorbid individuals with cardiovascular disease were more likely to experience a high treatment burden than individuals with cardiovascular disease only (2+ additional conditions OR 4.16 [2.80–6.18]). Also, individuals with difficulties in understanding health information were more likely to report a high treatment burden than individuals who found it easy to understand information about health (OR 9.97 [6.23–15.95]). Finally, individuals with multimorbidity and difficulties in understanding health information had markedly higher odds of experiencing a high treatment burden.ConclusionIf individuals find it difficult to understand health information, there is a risk they might feel overwhelmed by the treatment.Practice implicationsHealthcare professionals should be aware of health literacy challenges in planning medical treatment particularly for patients with both low health literacy levels and multimorbidity.     

Multivariate models of subjective caregiver burden in dementia: A systematic review

BackgroundBurden in dementia caregivers is a complex and multidimensional construct. Several models of burden and other representations of burden like depression or mental health are described in literature. To clarify the state of science, we systematically reviewed complex models that include both patient and caregiver determinants of caregiver burden.ObjectiveA review of determinant models of caregiver burden.DesignSystematic review.Data sourcesElectronic databases PubMed, PsycInfo and EMbase were searched in December 2013.Study selection and analysisResearch studies with quantitative outcome measures of caregiver burden or burden-related concepts, including both patient and caregiver functional characteristics as determinants. We categorized the determinant variables in the models and calculated the percentages of proven determinants within each category.ResultsWe found 32 studies with burden models and 24 depression and mental health models. Patient behavioral problems, caregiver coping and personality traits and competence are most consistent determinants of caregiver burden, depression and mental health. Behavioral problems are more significant than cognitive disorders or lack of self-care. Of all measured caregiver personality traits, neuroticism has the strongest impact on caregiver burden. Regarding caregiver competences, feeling competent or enjoying higher self-efficacy in general diminish caregiver burden and promote caregiver mental health.     

What really matters to bipolar patients' caregivers: sources of family burden

BACKGROUND: Identifying and modifying burdensome aspects might reduce the level of burden and their negative effects both on caregivers and patients' outcome. Most studies evaluate acutely ill patients, whereas the most relevant problems may be related to subthreshold symptoms and long-term outcome. The aims of the present study were to assess caregiver's subjective burden, to analyse which were the most burdensome aspects for caregivers and to study which variables could explain the caregiver's subjective burden. METHODS: Caregivers of 86 euthymic bipolar patients completed the subjective burden subscale from an adapted version of the Social Behaviour Assessment Schedule. RESULTS: Caregivers showed a moderate level of subjective burden. The highest levels of distress were reported regarding the patient's behaviour; the most distressing behaviours were hyperactivity, irritability, sadness and withdrawal. Regarding the patient's role performance, the most worrying aspects were those associated with the patient's work or study and social relationships. Regarding adverse effects on others, caregivers were especially distressed by the way the illness had affected their emotional health and their life in general. Poorer social and occupational functioning, an episode in the last 2 years, history of rapid cycling and the caregiver being responsible for medication intake explained a quarter of the variance of the caregiver's subjective burden. LIMITATIONS: This was a cross-sectional study focused only on primary caregivers, there was no control group of non-bipolar patients. CONCLUSIONS: This study provides relevant data concerning the burden of caregivers of stable bipolar patients, pointing at potential targets for psychosocial interventions.     

Diabetes mellitus patients' family caregivers' subjective quality of life

OBJECTIVES: To assess the subjective quality of life (QOL) of family caregivers of Sudanese type-1 and type-2 diabetic outpatients, using the WHO 26-item QOL instrument, compared with a general population sample; and to examine the factors associated with caregiver QOL. METHOD: Responses of caregivers of 105 outpatients with type-1 diabetes and 135 with type-2 diabetes were compared with 139 general population subjects. RESULTS: Caregivers were satisfied with the content of items related to general social supports. Type-1 caregivers had significantly lower QOL scores than type-2 caregivers and the general population. Parents and siblings had lowest scores compared with other family groups. Caregivers scored higher than patients. Patients' age and duration of illness, and caregivers' education, marital status and state of health were positively associated with caregiver QOL. Caregivers' QOL was predicted by their appraisal of patients' QOL. CONCLUSIONS: Caregivers who were sick, younger, single, less educated and caring for patients with more recent illness appeared relatively vulnerable. Clinicians should be interested in the dynamics of the family caregiving situation--as it impacts QOL--and in promoting caregiver awareness of diabetes in order to enhance the caregiving role, quality of care and QOL.     

Network social capital and health information acquisition

ObjectiveThis study examines the associations of network social capital with obtaining health information from health care professionals, the media, and laypeople. We also investigate whether and how the relationship between social capital and health information acquisition differs by personal health literacy. We used a position generator to measure network social capital.MethodsWe conducted a survey with a nationally representative sample (N = 626) in the United States in April 2014.ResultsNetwork social capital was positively associated with obtaining health information from health professionals, the media, and laypeople. Also, the associations of social capital with health information acquisition from health professionals were enhanced among those with adequate personal health literacy. However, health literacy did not moderate the relationship between social capital and health information acquisition from the media and laypeople.ConclusionSocial capital may encourage individuals to utilize health information sources. Also, health literacy might reinforce the linkage between social capital and acquiring health information from health professionals.Practice implicationsSocial capital interventions may promote health information acquisition. Also, health professionals should communicate with patients in a patient-centered way so that low-literate individuals easily understand health information. Moreover, a universal precaution approach should be employed.     

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.     

Literacy skills,language use,and online health information seeking among Hispanic adults in the United States

ObjectiveOnline health information is underutilized among Hispanics with low English proficiency in the U.S. This study examines the association between a unique measure of general English literacy, language use, and online health information seeking among Hispanic adults.MethodsData for Hispanics ages 25–65 (N = 700) come from the 2012/2014 Program for International Assessment of Adult Competencies (PIAAC). Binary logistic regression models were used to predict online health information seeking as a function of literacy skill scores (0–500 points) and primary language use (Spanish vs. other).ResultsLiteracy (Odds-Ratio = 1.012, p < 0.001) was a positive predictor, while speaking Spanish at home (Odds-Ratio = 0.352, p < 0.01) was a negative predictor of online health information seeking.ConclusionLiteracy skills and language use appear to be separate contributors of online health information seeking among Hispanic adults.Practice implicationsOnline health information providers should be aware of literacy skills and Spanish language use as barriers to online health information seeking among Hispanics, particularly those who have both limited literacy skills and predominantly Spanish language use.     

Access to health information,health literacy and health-related quality of life among women living with breast cancer: Depression and anxiety as mediators

ObjectiveThis study examined the direct and indirect influences of health literacy and access to health information on the quality of life among 205 women living with breast cancer in Ghana.MethodsA cross-sectional survey design was employed. The interviewer-administered instrument included the health literacy scale, questions on access and satisfaction with healthcare information, depression and anxiety scale, and the Functional Assessment of Cancer Therapy-Breast Cancer.ResultsAccess to health information and health literacy had significant indirect effects on quality of life through depression and anxiety. Whereas health literacy had direct influence on quality of life after controlling for other factors, access to information had no direct influence on quality of life.ConclusionHealth literacy and access to health information improve quality of life in women living with breast cancer by reducing the levels of depression and anxiety. Depression and anxiety serve as possible mechanisms for the positive impacts of access to health information and health literacy on improved quality of life among breast cancer patients.Practice implicationsHealth care providers need to ensure that the information needs of patients are met in oncology practice to reduce their negative emotional states which would lead to improved health and wellbeing.     

Anticipatory grief of spousal and adult children caregivers of people with dementia

Background

Anticipatory grief (AG) among caregivers of people with dementia is common and has been found to be related to negative health outcomes. Previous studies showed different patterns of AG between spousal and adult children caregivers of people with dementia (PWD) at different stages; however, the levels of such grief are not yet compared. The findings in Western studies are very limited, and inconsistencies have also been found in Asian studies.

Methods

One hundred and eight primary caregivers (54 spousal and 54 adult children) of community-dwelling PWD were recruited from elderly community services sectors in Hong Kong, China through quota sampling. The demographics, AG (measured by the Marwit-Meuser Caregiver Grief Inventory-short form), subjective caregiver burden, and well-being of the participants were assessed. A Functional Assessment Staging Test was used to grade the stages of dementia of the PWD. In this study, those in stages 4 and 5 were regarded as being at an earlier stage, and those in stages 6 and 7 at a later stage of dementia.The Mann-Whitney U-test and the Chi-square test were used to compare the variables between spousal and adult children caregivers, and the Kruskal–Wallis test was used to compare the outcomes among the sub-groups (spousal caregivers caring for relatives with earlier/later stage dementia; and adult children caregivers caring for relatives with earlier/later stage dementia). A post-hoc analysis was also conducted to identify differences between the sub-groups. Pearson’s correlation was performed to investigate the bivariate relationships among AG, subjective caregiver burden, and well-being.

Results

The results showed that spousal caregivers caring for relatives in a later stage of dementia experienced the highest level of AG and subjective caregiving burden, as compared with spousal caregivers caring for relatives in an earlier stage of dementia and adult children caregivers. Well-being was significantly negatively correlated with AG and subjective caregiver burden, while AG was also significantly correlated with subjective caregiver burden.

Conclusion

This study found that spousal caregivers of relatives in a later stage of dementia have significantly higher levels of AG, warranting special attention and extra support from palliative professionals.

     

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.     

What are we doing to support informal caregivers? A scoping review of caregiver education programs in cancer care

ObjectivesThe cancer system is experiencing a rise in cancer prevalence, a workforce shortage, and is resource-stretched. In this environment, informal caregivers (unpaid family caregivers of cancer patients) are required to take on expanded care roles and experience the debilitating effects of caregiver burden. Education programs are increasingly being developed to support caregivers. The aim of this review is to summarize what is known about these programs.MethodsA scoping review was conducted from May 2019 to January 2020. The literature search yielded 34,906 articles.Results119 articles were included, and ninety-two (77%) were focused on in-person psychoeducational programs.ConclusionMost caregiver programs have a unidimensional focus on psychoeducational training, demonstrating a need for more comprehensive programming to address the full spectrum of caregiver needs.Practice implicationsClinicians and educators must collaborate to create accessible, equitable education programs that comprehensibly address the needs of unpaid family caregivers beyond addressing psychological aspects of cancer care. This will ensure that a broader range of patients and caregivers are equipped with the knowledge and skills needed to cope with a cancer diagnosis, navigate the health system and to maintain their quality of life.     

Professional Use of Social Media by Pharmacists: A Qualitative Study

BackgroundSocial media is frequently used by consumers and health care professionals; however, our knowledge about its use in a professional capacity by pharmacists is limited.ObjectiveOur aim was to investigate the professional use of social media by pharmacists.MethodsIn-depth semistructured interviews were conducted with practicing pharmacists (N=31) from nine countries. Interviews were recorded, transcribed verbatim, and thematically analyzed.ResultsWikipedia, YouTube, and Facebook were the main social media platforms used. Professional use of social media included networking with peers, discussion of health and professional topics, accessing and sharing health and professional information, job searching, and professional promotion. Wikipedia was the participants’ first choice when seeking information about unfamiliar topics, or topics that were difficult to search for. Very few pharmacy-related contributions to Wikipedia were reported. YouTube, a video-sharing platform, was used for self-education. University lectures, “how-to” footage, and professionally made videos were commonly watched. No professional contribution was made to YouTube. Facebook, a general social networking site, was used for professional networking, promotion of achievements, and job advertisements. It also afforded engagement in professional discussions and information sharing among peers.ConclusionsParticipants used social media in a professional capacity, specifically for accessing and sharing health and professional information among peers. Pharmacists, as medicines experts, should take a leading role in contributing to health information dissemination in these user-friendly virtual environments, to reach not only other health care professionals but also health consumers.     

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.