Health literacy of caregivers of adult care recipients: A systematic scoping review

Caregivers play a vital role in providing support to adults with a chronic condition, or cognitive or physical impairment. Low health literacy in caregivers has the potential to impact adequate care provision, and consequently, care recipient health outcomes. The aim of the study was to systematically review literature related to health literacy of caregivers of adult care recipients, and examine its relationship with care recipient, and caregiver, health outcomes. Electronic databases were searched for relevant English‐language publications that assessed health literacy in caregivers. Included studies were abstracted into evidence tables and assessed using an eight‐item quality scale. The search identified 2717 new titles and abstracts, with 67 shortlisted for full review. Twelve papers from 2003 to 2015 met the inclusion criteria. The prevalence of limited health literacy in caregivers ranged from 0% to 52.5% depending on the measure and cut‐off criteria used. Associations were found between low caregiver health literacy and (i) poorer care recipient self‐management behaviours; (ii) increased care recipient use of health services; and (iii) increased caregiver burden. The quality of the studies ranged from fair to excellent. Low health literacy in caregivers differed depending on the measures and scoring criteria used. Evidence to support the relationship between caregiver health literacy and care recipient, and caregiver health outcomes was limited to single studies. Recommendations for further research include: the development of caregiver health literacy measures across different populations; examination of associations between caregiver health literacy and care recipient outcomes; and the development of interventions designed to improve caregiver health literacy.     

癌症晚期患者的主要照顾者需求的研究进展

目的 本文对癌症晚期患者的主要照顾者、主要照顾者的需求和主要照顾者需求的国内研究进行综述,期望为安宁疗护工作的开展提供指导。方法 通过“癌症晚期”、“主要照顾者”、“需求”、“家属” 等关键词或主题在中国知网、万方、PubMed、Web of Science、Science Direct 数据库检索2000年1月— 2021年12月国内外关于癌症晚期患者的主要照顾者需求的相关性研究。结果 共查阅到585篇文献（中文文献424篇,英文文献161篇）,将重复文献与非相关研究排除后,最终有130篇文献被纳入（中文文献79篇,英文文献51篇）。癌症晚期患者的主要照顾者的照护需求比较高,其需求的内容主要包括对患者疾病知识、患者症状管理、主要照顾者心理支持和主要照顾者信息的需求;国内还没有成熟癌症患者的照顾者需求评估工具;癌症晚期患者的主要照顾者需求受多个因素影响,包括主要照顾者自身因素、患者因素、经济因素。 结论 识别主要照顾者的需求被认为是更好地理解主要照顾者在癌症护理中的重要步骤,但目前的研究存在对其需求研究较少,未来应加强开展相关研究,如开发主要照顾者需求的评估工具,加强对主要照顾者的关注和教育,达到缓解其履行照顾职责时的压力,满足其照顾需求,促进其身心健康,同时对癌症患者的治疗和康复具有良好的促进作用。     

The Role of Health Literacy in Predicting Multiple Healthcare Outcomes Among Hispanics in a Nationally Representative Sample: A Comparative Analysis by English Proficiency Levels

Health literacy (HL) research among Hispanics currently focuses on individuals with limited English proficiency but impacts of HL on healthcare outcomes among other English language proficiency groups is relatively unknown. Regression models assessed associations between HL and healthcare outcomes for Hispanics overall (n = 4013) and for proficiency level sub-populations using the 2007 Pew Hispanic Health Survey. Overall, Hispanics with adequate HL percieved US medical care as “excellent,” were more satisfied with their doctor’s help, and reported “excellent” overall health. In the sub-population analysis, “excellent” perception of US healthcare was associated with HL among the Spanish and English dominant groups. Among bilinguals, adequate HL was associated with decreased use of traditional medicine. The effect of adequate HL varied within English proficiency groups. HL research that focuses only on Spanish dominant speakers can exclude a substantial percentage of English proficient or bilingual populations who have low HL.     

Ten Suggested Health Literacy Attributes of a Health Care Organization

The health care system in the United States is becoming increasingly complex, placing greater demands on consumers to be more proactive and informed about their care. However, 88% of the population is unable to successfully navigate the health care system due to low levels of health literacy. Health care organizations can play a role in improving health literacy. The “Ten Attributes of the Health Literate Health Care Organizations” produced by members of the Institute of Medicine’s Roundtable on Health Literacy provides guidance.     

Training Needs Among Family Caregivers Assisting During Home Health,as Identified by Home Health Clinicians

ObjectivesTo estimate the proportion of family caregivers assisting older adults during Medicare home health who have an identified need for activity-specific training and identify characteristics associated with caregiver training needs.DesignNationally representative retrospective cohort study.Setting and Participants1758 (weighted n = 8,477,990) Medicare beneficiaries who participated in the National Health and Aging Trends Study (NHATS) and received Medicare-funded home health care between 2011 and 2016.MeasuresOlder adult and caregiving network characteristics before home health (sociodemographic factors, caregiver assistance, older adult health and function) were drawn from NHATS; characteristics during home health (family caregiver training needs, older adult health and function) were drawn from home health patient assessments. Weighted proportions of family caregivers with an identified need for activity-specific training were estimated. Weighted, multivariable logistic regressions modeled associations between older adult/caregiving network characteristics and family caregivers’ identified activity-specific training needs during home health.ResultsMore than 1 in 3 (35.7%) family caregivers assisting older adults during Medicare home health had an identified training need with at least 1 caregiving activity. Rates of need for training varied widely, from 8.6% among caregivers helping with advocacy to 48.2% among caregivers helping with medical procedures. In weighted analyses that adjusted for older adults’ health and function, family caregivers were less likely to have identified training needs when assisting older adults with ongoing disability or who received caregiver assistance before home health admission.Conclusions and ImplicationsFindings highlight the pervasiveness of family caregivers' training needs, particularly with medically oriented activities, and indicate that escalations in older adults’ care needs are linked to caregiver training needs. Therefore, transitions of care may present critical opportunities to connect family caregivers with training resources.     

The effect of caregiving on preventive care for people with disabilities

BackgroundOverall, disparities exist in preventive health care services for people with disabilities compared with other Americans. Little is known about the effects of caregiving on preventive services use. This study examines caregiver characteristics and influence on the use of preventive services for people with disabilities.MethodsThe 2000-2001 Behavioral Risk Factor Surveillance System of 25 states included 5486 self-reported respondents with disabilities who were surveyed for preventive care use. Multivariate logistic regression adjusted for demographic and functional status of these respondents.ResultsAmong the subset of the respondents with caregivers, those with paid caregivers were significantly more likely to receive an influenza vaccination (adjusted odds ratio [OR], 1.49; 95% confidence interval [CI], 1.08-1.93). Among those with a caregiver, those with a spouse/partner caregiver were also significantly more likely to receive an influenza vaccination (adjusted OR, 1.33; 95% CI, 1.05-1.69) or PPV (adjusted OR, 1.59; 95% CI, 1.41-2.38) compared with those with “other” as their caregiver. Women with disabilities with a spouse/partner caregiver were significantly more likely to have ever had a Pap test (adjusted OR, 3.13; 95% CI, 1.41-6.67) or mammogram (adjusted OR, 1.85; 95% CI, 1.23-2.70) than those with “other” relative caregiver. Those respondents who reported “rarely adequate” caregiver satisfaction were significantly more likely to have self-reported ever having colon cancer screening compared with those with a usually adequate caregiver. The majority of results did not show consistent evidence of caregiver benefit, and a fair number of the associations were not statistically significant.ConclusionThe findings suggest that having a caregiver is not consistently associated with self-report of ever using preventive services. However, this study suggests that caregiver characteristics are associated with preventive care for people with disabilities. For influenza vaccination, our results showed that paid caregivers were more likely to provide preventive care to individuals with disability than a spouse or partner, which were more likely to provide more preventive care than those with “other” caregiver. Given the number of comparisons, we consider these results to be preliminary and require more confirmation in other population data.     

The Effect of Altruism on the Spending Behavior of Elderly Caregivers of Family Members With HIV/AIDS in South African Townships

HIV/AIDS has led to an enormous demand for health care in the developing world and many governments have opted to capitalize on altruistic home-based caregivers. These caregivers are mainly poor older women and their financial survival is critically important to themselves and their families. We found that as the patient's illness progressed: (a) the altruistic cultural norm “ubuntu” led the caregiver to increase spending and (b) the social pressure (sanction) of stigma led to a very dramatic drop in direct interpersonal assistance. The impact on their spending, health care, and the related public policies are discussed.     

Use of home telehealth in palliative cancer care: a case study

We conducted a mixed-methods case study to explore the perceptions of family caregivers and palliative cancer patients of home telehealth, and their experience with it. The intervention in the randomized controlled trial from which study participants were selected consisted of specialist nurses available 24 hours per day who communicated with patients and families using videophones, with optional remote monitoring. Qualitative data were collected from interviews with five patient/caregiver dyads and seven bereaved family caregivers, direct observation and nursing documentation. Quantitative data were collected from computerized nursing documentation and analyzed for patterns of use. During the study there were 255 contacts, including videophone, telephone or face-to-face visits, between tele-nurses and families. Overall the patients, family caregivers and tele-nurses felt that home telehealth enabled family caregiving, citing increased access to care, and patient and family caregiver reassurance. Pain management was the most common reason for initiating contact with the nurse, followed by emotional support. Concerns included lack of integration of services, inappropriate timing of the intervention and technical problems. The case study confirmed the importance of timely and accessible care for a group of clinically vulnerable, dying cancer patients and their family caregivers.     

REPORT FROM ITALY

Background: Increasing numbers of family caregivers are confronted with caring for a demented, community-dwelling relative. Living with, caring for, and supervising a demented older relative places a heavy burden on the involved family members. In particular, primary caregivers report increased strain, feelings of depression, and decreased general wellbeing as a direct consequence of care giving. Since the most common cause of failure of a home-care situation appears to be caregiver burnout, detecting critical, negative changes in the wellbeing of the caregiver is important. Methods: In a nationwide, cross-sectional study by the Belgium Social Security Board, a population of demented older patients and their care-giving relatives was investigated. The care situation and characteristics of demented, older patients and their caregivers were inventoried, and their effects on the wellbeing of caregivers were evaluated. Results: Approximately 30% (n = 28) of caregivers of demented, older relatives were depressed. Depression occurred independently of objective care characteristics and the mental and physical state of the demented patient. Rather, it was related to coping mechanisms and to the perceived burden reported by the caregiver.

Conclusion: Offering support and counsel to caregivers is an important issue in efficiently maintaining home-care situations.     

Family caregiver satisfaction with care at end of life: report from the cultural variations study (CVAS)

The objective of this study was to examine differences in family caregiver satisfaction with care at end of life based on site of death, in an observational study involving advanced cancer patients and their family caregivers. The study was based on follow-up interviews with 28 family caregivers of 28 patients who died during a two-year prospective study involving 68 patients and 68 family caregivers. Telephone interviews addressed the circumstances of the patients 'death, their satisfaction with the care provided to the patient, and their satisfaction with how well they were attended to by health providers. There were no associations between site of death (died at home vs. did not die at home) and family caregiver satisfaction with the overall care provided to the patient. However family caregivers of patients who died at home responded that they thought the patient was more at peace (with respect to spiritual and religious matters) than did family caregivers of patients who did not die at home (p = 0.003). Family caregivers of patients who died at home appeared to feel less satisfied with the attention paid to their own wishes regarding the patient's care (p = 0. 13), less satisfied with the emotional support provided to them by healthcare personnel taking care of the patient (p = 0. 08), and less satisfied with communication from health providers (p = 0. 11). Findings indicate that although dying at home appears to provide a more peaceful death for the patient, it may also distance family caregivers from health professionals and leave them feeling less supported during the patient's last days of life.     

Perceived benefits of geriatric specialty telemedicine among rural patients and caregivers

Objective

Explore the perceived benefits of a Veterans Health Administration (VHA) geriatric specialty telemedicine service (GRECC Connect) among rural, older patients and caregivers to contribute to an assessment of its quality and value.

Data Sources

In Spring 2021, we interviewed a geographically diverse sample of rural, older patients and their caregivers who participated in GRECC Connect telemedicine visits.

Study Design

A cross-sectional qualitative study focused on patient and caregiver experiences with telemedicine, including perceived benefits and challenges.

Data Collection

We conducted 30 semi-structured qualitative interviews with rural, older (≥65) patients enrolled in the VHA and their caregivers via videoconference or phone. Interviews were recorded, transcribed, and analyzed using a rapid qualitative analysis approach.

Principal Findings

Participants described geriatric specialty telemedicine visits focused on cognitive assessments, tailored physical therapy, medication management, education on disease progression, support for managing multiple comorbidities, and suggestions to improve physical functioning. Participants reported that, in addition to prescribing medications and ordering tests, clinicians expedited referrals, coordinated care, and listened to and validated both patient and caregiver concerns. Perceived benefits included improved patient health; increased patient and caregiver understanding and confidence around symptom management; and greater feelings of empowerment, hopefulness, and support. Challenges included difficulty accessing some recommended programs and services, uncertainty related to instructions or follow-up, and not receiving as much information or treatment as desired. The content of visits was well aligned with the domains of the Age-Friendly Health Systems and Geriatric 5Ms frameworks (Medication, Mentation, Mobility, what Matters most, and Multi-complexity).

Conclusions

Alignment of patient and caregiver experiences with widely-used models of comprehensive geriatric care indicates that high-quality geriatric care can be provided through virtual modalities. Additional work is needed to develop strategies to address challenges and optimize and expand access to geriatric specialty telemedicine.     

Is there agreement between Canadian older adults and their primary informal caregivers on behaviour towards institutionalisation?

We aimed to compare behaviour towards institutionalisation between frail older adults and their informal caregivers, and identify correlates of differential behaviour. In 2004, during the fourth wave of the longitudinal Program of Research to Integrate Services for the Maintenance of Autonomy (PRISMA) study (province of Québec, Canada), 86.7% of eligible dyads, that is 593 participants and their primary informal caregivers, were asked separately if they thought about placement, discussed it with someone or visited an institution during the previous year. An ordinal measure of behaviour towards institutional placement was derived and agreement between dyad members was assessed with the weighted kappa. Although identical behaviour was relatively high (65.4%), it represented almost exclusively no thoughts by either member and the weighted kappa was low (0.16). Differential behaviour was then analysed as a three‐level dependent variable (thoughts only by the care‐receiver, thoughts only by the caregiver, no thoughts by either dyad member) in a multiple multinomial logistic regression analysis. Compared with neither person thinking about it, the care‐receiver alone thinking about placement was associated with using voluntary services, receiving help for home maintenance and visits to the emergency room during the previous year, along with the caregiver being aged 70 years or over. Compared with neither person thinking about it, the caregiver alone thinking about placement was associated with being male, not residing with the care‐receiver, sensing a higher subjective burden, along with the care‐receiver being 85 years or older, not being able to feed him/herself independently and visits to the emergency room during the previous year. Identified correlates can be useful in targeting dyads likely to behave differently. Communication within these dyads needs to be enhanced, as it is crucial to ensure that both parties are comfortable with possible future institutionalisation. In this regard, health professionals could play a role in bringing the issue to discussion.     

An integrative review on family caregivers’ involvement in care of home‐dwelling elderly

Often family members provide care‐giving, which allows older adults to remain in their homes. With declining health and increasing frailty, care‐giving of elderly people becomes a task of family caregivers (FC) in conjunction with home care nurses. It has been shown in both acute care settings and long‐term care facilities that family members prefer to be involved in decision‐making and care planning for their next of kin. Therefore, an integrative review was conducted to explore the body of knowledge of FCs’ involvement in home‐care settings from the FCs’ perspective. CINAHL, PubMed, and Cochrane databases was searched with the terms family caregiver, involvement, home care, and community dwelling. Studies written in German or English between 1996 and 2017 focusing on FCs’ caring for home‐dwelling older adults together with home care nurses were included and critically appraised. The extracted findings were analysed with concept analysis method. Twenty‐six studies were included and five themes were identified. Four themes formed the basis of assistance towards family caregivers by nurses and included “relationship building with professionals,” “negotiating with professional care,” “being professionally supported,” and “managing role expectations and knowledge sharing”. The fifth theme, “working together” described the mutual care for the care recipient. Although the first four themes were consistent with a pre‐existing conceptual model by Sims‐Gould and Marin‐Matthews (2010), the fifth required an expansion of the model with an additional contribution “collaborative practice”. The findings illustrate that involvement in care is an interactional process, which provides the basis for collaborative practices with the home care nurses for family caregivers. Family members often want to be part of the healthcare team, and nurses need contextual factors that allow providing their full range of skills and knowledge to involve family caregivers accordingly.     

Health Literacy, Health Information Seeking Behaviors and Internet Use Among Patients Attending a Private and Public Clinic in the Same Geographic Area

Despite the growing body of health information available online, patients with limited health literacy may lack either internet access or skills necessary to utilize this information. Nonetheless, patients at all health literacy levels may prefer other primary sources to obtain health information. We conducted a cross-sectional study to measure health literacy of patients attending two clinics in Dallas, TX and determine associations between health literacy, health information access and internet usage before and after controlling for confounders. Patients from both clinics (county N = 265; private N = 233) completed a brief survey which included sociodemographics, internet patterns, confidence in filling out medical forms and a self-administered Newest Vital Sign to measure health literacy. In the county clinic, most patients (61.5 %) were Hispanic, had low income (<$19,000/year), limited education (<11th grade) and a high likelihood or possibility of limited health literacy (68.5 %). In the private clinic, participants were mostly black (40.4 %) or white (38.6 %), had higher incomes (≥$46,000), higher education (technical college or college) and adequate health literacy (75.1 %). The primary source of obtaining health information in both clinics was their health care professional (50.6 % county; 40.1 % private). In multivariate analyses to determine differences by health literacy level, there were no statistically significant differences between patients with limited and adequate health literacy and their primary information source. Regardless of health literacy, patients rely on their health care providers to obtain health information. These results showcase the importance of providers’ effective communication with patients to make shared decisions about their health regardless of other factors.     

Quality of life and coping strategies among lung transplant candidates and their family caregivers

Although numerous studies have examined coping strategies and quality of life (QOL) among patients with chronic diseases and their family caregivers, no studies have examined the reciprocal effects of patient and caregiver coping strategies on their dyad partner's QOL. Because most people who cope with stressful health experiences do so within the context of interpersonal relationships, it is important to understand the ways in which the two partners' coping strategies may reciprocally affect each other's QOL. Adult lung transplant candidates and their caregivers (N=114 pairs) participated in semi-structured interviews that included measures of QOL and coping with patients' health-related problems. Multivariate, canonical correlation analyses were performed to examine unique patterns of associations between coping and QOL in patient-caregiver dyads. Better patient QOL, across multiple domains, was associated with better caregiver QOL. Multiple elements of patients' coping, including greater use of active coping and emotionally oriented coping were related to generally poorer patient QOL in psychosocial and physical domains. Similarly, caregivers who used more emotionally oriented coping had poorer QOL. There was no statistically reliable relationship between either (a) patient and caregiver use of coping strategies, or (b) caregiver coping and patient QOL. However, patients' coping strategies were important correlates of caregivers' QOL. These findings belie common clinical beliefs that family members' coping responses to patients' health are likely to affect patient well-being. Instead, patients' coping and QOL may be critical for understanding caregiver well-being, especially in the current era in which caregivers are assuming increased responsibility for providing patient care.     

Patient and Family Caregivers’ Experiences of Living With a Jejunostomy Feeding Tube After Surgery for Esophagogastric Cancer

Background:Jejunostomy feeding tubes (JFTs) can be used to provide nutrition support to patients who have had surgery for esophagogastric cancer. Although previous research reports how patients cope with a gastrostomy tube, little is known about the impact of having a JFT. The aim of this qualitative study was to explore how patients and their informal caregivers experience living with a JFT in the first months following surgery. Methods: Participants were purposively sampled from a cohort of patients recruited to a trial investigating home enteral nutrition vs standard care after esophagogastric surgery for cancer. The sampling framework considered age, sex, and marital status. Informal caregivers were also invited to participate. Interviews were audio recorded, transcribed verbatim, and anonymized. Inductive thematic analysis was used to identify key themes related to living with a JFT. Results: Fifteen patient interviews were conducted; 8 also included a family caregiver. Analysis of the data resulted in 2 main themes: “challenges” and “facilitators” when living with a JFT. While “physical effects,” “worries” and “impact on routine” were the main challenges, “support,” “adaptation” and “perceived benefit” were what motivated continuation of the intervention. Conclusion: Findings suggest that participants coped well with a JFT, describing high levels of compliance with stoma care and the feeding regimen. Nonetheless, disturbed sleep patterns and stoma‐related problems proved troublesome. A better understanding of these practical challenges, from the patient and family caregiver perspective, should guide healthcare teams in providing proactive support to avoid preventable problems.     

Factors of Caregiver Isolation in a Rural Midwest Area

ABSTRACT

The authors, working with a Veterans Affairs Home Based Primary Care Team in rural areas of Illinois and Indiana, noted the relative social isolation of many family caregivers of patients. They explored several factors that could contribute to this isolation: values held by the caregiver, transportation restraints, limited caregiver resources and caregiver health. Caregiver values, such as obligation and responsibility, stood out, contributing to generally excellent care for the elderly veteran patients, but also to the observed isolation. A solution would be increased funding for in-home respite, to help the family caregivers get needed rest and outings, thus responding to an expressed need, and enhancing their ability to provide “low-tech” in-home care to their loved ones.