Little is known about the burden of caring for stroke patients cross-culturally. This article compares the perceived burden for caregivers of stroke survivors in Korea and the United States. A brief interview was conducted to determine specific problem areas for caregivers. Caregiver burden (The Sense of Competence Questionnaire) and social support (The ENRICHD Social Support Inventory) were also measured. Overall sense of burden from caregiving was higher in the Korean cohort than in the Seattle cohort. The primary predictors of overall burden were caregiver and patient depression, and insufficient social support. The lower perceived social support among the Korean caregivers may reflect changes in Korean culture with lack of social support outside the family. American caregivers were more often troubled by lack of time for themselves. These findings may inform rehabilitation nurses in planning supportive interventions for stroke survivors and their caregivers that attend to cultural values.
Care givers; Stroke; Cultural Issues; Depression; Social Support; fatigue
Care for stroke patients has improved steadily in southern Vietnam. Medical treatments such as thrombolytic therapy have been implemented at several hospitals, and stroke-care units composed of a team of various health professionals have been created. However, little attention has been focused on providing support to caregivers of stroke patients. This study aimed to characterize the caregivers of stroke patients who were treated in state-owned acute-care hospitals and to learn about their needs when patients are discharged. Such information can be used to enhance the caregiver’s support system.
We used questionnaires to conduct a descriptive study in 2011 at a state-owned acute-care hospital in southern Vietnam. We recruited study participants from among caregivers of stroke patients who had been informed of their hospital discharge date. We assessed 8 caregiver characteristics, and caregiver participants selected their needs from the survey’s list of 15 possible needs. We analyzed the data by using the independent sample t test and logistic regression.
Of the 93 caregivers who consented to participate, 86 (92.5%) completed the survey and indicated their concerns at discharge. The most frequently cited need was information on how to prevent stroke recurrence (72, 83.7%), followed by which drugs are most effective in preventing a relapse (62, 72.1%), how long recovery would take (61, 70.9%), and availability of hospitals in the patient’s hometown (60, 69.8%). A little over half of caregivers indicated financial concerns. A caregiver’s need for information on diet for a stroke survivor increased with the caregiver’s education level.
This study revealed several needs among caregivers of stroke survivors in southern Vietnam that are similar to those found by studies of caregivers of stroke survivors in high-income countries. Our findings suggest that comprehensive stroke care that includes caregiver education about healthful diets and prevention of stroke recurrence is needed at state-owned acute-care hospitals in southern Vietnam.
Multiple sclerosis (MS) has a major impact on the physical, psychological and social life of patients and their families. The aim of this study was to evaluate the different perceptions of patients and caregivers about management of MS, particularly about the same items, to gather information to ameliorate the care of patients.
We evaluated what MS patients and caregivers perceive as unmet needs and compared patients’ opinions with caregivers’ opinions using a multidimensional questionnaire. The questionnaire was specifically designed for the study, taking into account different aspects of the global care perceived by patients and care givers, such as information about MS, medical treatment and rehabilitation, patients’ relationships with medical staff and their psychological and social life.
We administered the questionnaire to 497 patients and 206 caregivers. Results showed that the majority of participants were satisfied with medical staff but expressed a desire that staff be more forthcoming with information about MS. As for medical treatment concerns, more patients found there to be useful a multidisciplinary approach than caregivers did. Both required psychological support for patients but patients felt a greater need for it at the time of diagnosis, whereas caregivers felt it was required post-diagnosis. Both reported significant strains on patient relationships at work but no effect on other social interactions.
A better understanding of MS patient needs, starting from the point of view of patients and caregivers, could have a great impact on quality of life and on management of the disease.
The objectives of this study were to examine the relationship between selected decedent and caregiver characteristics, facility-related perceptions, and emotional and physical health of 434 informal caregivers (94% family) of recently deceased residents of residential care/assisted living facilities and nursing homes. We also examined potential mediating effects of social support (informal, staff, and spiritual).
We analyzed data using linear mixed models.
Among caregivers, younger age, female gender, more education, financial burden, other dependents, poorer perceptions of care, and more care involvement were associated with more emotional strain. More staff support also was associated with more emotional strain and partially mediated the relationship between having a trusted staff member and emotional strain. Characteristics associated with poorer physical health included unemployment, financial burden, poorer physician communication, and trusted staff member. Informal social support was directly related to better physical health and mediated the relationships between physical health and both physician communication and financial burden.
Many characteristics related to end-of-life caregiving outcomes in long-term care are consistent with community-based studies, suggesting that end-of-life caregiving outcomes in long-term care are not markedly different than in other settings. However, the role of staff support may either facilitate or complicate emotional strain and merits additional study.
End of life; Long-term care facilities; Social support; Emotional and physical health
The trend of patients who are invasively ventilated to prefer home care is one that benefits both the patient and the health care system. However, this assumes a role for patients’ family members to become informal caregivers.
To explore the impact of caring for a ventilator-assisted individual on informal caregivers.
A descriptive design with semistructured caregiver interviews and the Caregiver Burden Inventory were used. Participants were informal caregivers of a family member with a progressive neuromuscular disease on invasive ventilation for at least six months. Transcript coding was performed and regularly reviewed, and recruitment continued until data saturation. Qualitative analysis was based on ‘thematic analysis’.
A total of 21 caregivers were interviewed. Five themes developed: a sense of duty; restriction of day-to-day life; physical and emotional burden; training and education; and the need for more paid support. Caregivers described a sense of duty to take care of loved ones, but suffered a significant restriction of their own time with a negative impact on their physical and mental health. The initial transfer home was highlighted as the most stressful part of the process. The Caregiver Burden Inventory scores supported a high level of burden: median 49 (interquartile range 39.5 to 53.0) of a maximum 96.
Homecare for ventilator-assisted individuals with progressive neuromuscular disease causes significant burden to informal care-givers. Approaches to lessen this burden, such as increased paid care, improved professional support and respite care, may enable home ventilation to be a more sustainable modality of care.
Burden of care; Family caregivers; Home ventilation; Mechanical ventilation; Neuromuscular disease
Multiple sclerosis (MS) burdens not only patients but also their informal or family caregivers. This study was conducted to identify characteristics of caregivers, caregiving, and MS patients receiving informal care that are associated with caregiving burden. Data were collected through a national survey of informal MS caregivers and analyzed using an ordered logistic regression model to identify factors associated with burden. Burden was found to be significantly greater among male caregivers than among female caregivers. Moreover, greater burden was associated with more frequent patient bladder dysfunction, more hours per week spent providing assistance, and greater restriction on the caregiver's ability to perform daily activities because of caregiving responsibilities. A strong association was found between the mental health status of the caregiver and burden. Health professionals should be sensitive to the impact of caregiving on the mental health of MS caregivers. The results of this study suggest that treating patient bladder dysfunction and facilitating respite care may reduce burden and improve the mental health of informal caregivers of people with MS. Future research should identify programs and services designed specifically to reduce burden experienced by male caregivers.
This paper describes both the use of and needs for informal caregivers of people with dementia, based on a questionnaire survey organized within the National Dementia Programme in the Netherlands. The National Dementia Programme is a quality collaborative of the Dutch Alzheimer's Association, the Institute of Quality of Healthcare (CBO) and the Knowledge Centre on Ageing (Vilans), instigated by the Ministry of Health, Welfare and Sport, to improve integrated care for people with dementia and their informal caregivers. The support needs of informal caregivers are important to improve caregiver well-being and delaying institutionalization of the person with dementia.
In the period April 2006 - January 2007, the National Dementia Programme questionnaire was completed by 984 informal caregivers. Descriptive statistics were used to analyze the use of and needs for additional professional support by informal caregivers. Chi-square tests were used to assess the relationships between characteristics of the caregivers (spouses, sons/daughters, sons/daughters in-law) and support needs on one hand and to assess the relationship between the living situation of the person with dementia (living at home or living in a nursing home or home for the elderly) and support needs on the other hand.
Almost all informal caregivers (92.6%) received some professional support. However, two thirds (67.4%) indicated they had one or more needs for additional professional support. Informal caregivers often need additional professional advice about what to do when their relative is frightened, angry of confused. Spouses reported different needs than sons or daughters (in-law): spouses relatively often need emotional support and sons or daughters (in-law) more often need information and coordination of dementia care.
Most of the informal caregivers report that they need additional information and advice, e.g. about how to cope with behavioral problems of their relative, about the progression of the illness trajectory, emotional support and coordination of dementia care. Future support programmes, e.g. in the field of case management, should address the specific needs of informal caregivers.
Objectives. Dental caries is the most common chronic childhood disease, with numerous identified risk factors. Risk factor differences could indicate the need to target caregiver/patient education/preventive care intervention strategies based on population and/or individual characteristics. The purpose of this study was to evaluate caries risk factors differences by race/ethnicity, income, and education. Methods. We enrolled 396 caregiver-toddler pairs and administered a 105-item questionnaire addressing demographics, access to care, oral bacteria transmission, caregiver's/toddler's dental and medical health practices, caregiver's dental beliefs, and caregiver's/toddler's snacking/drinking habits. Logistic regressions and ANOVAs were used to evaluate the associations of questionnaire responses with caregiver's race/ethnicity, income, and education. Results. Caregivers self-identified as Non-Hispanic African-American (44%), Non-Hispanic White (36%), Hispanic (19%), and “other” (1%). Differences related to race/ethnicity, income, and education were found in all risk factor categories. Conclusions. Planning of caregiver/patient education/preventive care intervention strategies should be undertaken with these caries risk factor differences kept in mind.
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.
We sought to understand caregivers’ use of, interest in, and perceived barriers to health information technology for out-of-home caregiving.
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.
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.
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.
caregivers; chronic disease; medical informatics
When managing chronic illnesses, caregivers repeatedly seek online information about providing complex, long-term care but often neglect to find information about how to care for themselves. Poor health among caregivers is not only detrimental to their own well-being but may also result in harm to those for whom they care. For this reason, caregivers need access to information and activities about caring for themselves in addition to the information about managing home care they were already likely to seek. The HPN Family Caregivers Website was developed to guide caregivers through the process of caring for themselves by establishing a caregiving routine, self-monitoring their mental and physical health, practicing good sleep hygiene, etc., while also managing the complexities of home care. While website information, activities and algorithms for managing chronic illnesses need to be specific to each population, the content guiding caregivers to care for their own health is universal.
Internet; Caregivers; Caregiving; Chronic illness
Untreated pain is common for patients at the end of life. Informal caregivers, often family or friends of patients, are responsible for working with hospice staff to provide pain management. Interdisciplinary team meetings conducted in hospices every two weeks provide an opportunity for hospice staff to communicate about pain management with informal caregivers of hospice patients.
We present challenges, solutions, and keys strategies for carrying out a randomized trial in the hospice setting.
We are conducting the ACTIVE study (Assessing Caregivers for Team Intervention through Video Encounters) to determine whether regular videoconferencing between hospice patients' informal caregivers and the hospice care team alters caregivers' perceptions of pain management and patients' pain. Participants must be primary caregivers for a hospice patient, at least 18 years of age, capable of providing informed consent, and have access to a computer with a high-speed Internet connection or a telephone. We randomized caregivers to participate in biweekly team meetings through video or phone conferencing (intervention) or to receive usual care from the hospice. All patients receive standard hospice care regardless of the group assignment of their informal caregiver.
As of July 1, 2012, there has been 1038 new admissions to the participating hospices. Of 391 cases in which no contact was made, 233 patients had died or had life expectancy less than 14 days. Home visits were made to 271 interested and eligible caregivers; 249 caregivers of 233 patients were randomly assigned to the usual care or intervention arm. Enrollment is on pace to meet recruitment goals.
Thorough pilot-testing of instruments and procedures helped us overcome barriers to conducting research in this vulnerable population. Keys to success included obtaining support from hospice medical directors, including hospice staff in study preparation, minimizing the burden on hospice staff, housing research staff in each participating hospice, using newsletters to enhance communication, developing and maintaining a detailed procedural manual, producing regular data quality reports, developing a secure site to facilitate coding videos for qualitative studies, and holding regular teleconferences with key staff.
Late enrollment of many patients in hospice left little to no time for their caregivers to take part in the intervention. Assisting caregivers of patients with very short life expectancy may require different methods.
The challenges of conducting randomized trials with hospice patients and caregivers can be addressed with appropriate study design, well-tested research methods, and proactive monitoring of any issues or problems.
hospice; randomized trial; pain management; videoconference; caregivers; interdisciplinary teams
Although a number of studies have shown good results in treating children with antiretroviral drugs (ARVs) in hospital settings, there is limited published information on results in pediatric programs that are nurse-centered and based in health centers, in particular on the psychosocial aspects of care.
Program treatment and outcome data were reported from two government-run health centers that were supported by Médecins Sans Frontières (MSF) in Kigali, Rwanda between October 2003 and June 2007. Interviews were held with health center staff and MSF program records were reviewed to describe the organization of the program. Important aspects included adequate training and supervision of nurses to manage ARV treatment. The program also emphasized family-centered care addressing the psychosocial needs of both caregivers and children to encourage early diagnosis, good adherence and follow-up.
A total of 315 children (< 15 years) were started on ARVs, at a median age of 7.2 years (range: 0.7–14.9). Sixty percent were in WHO clinical stage I/II, with a median CD4% of 14%. Eighty-nine percent (n = 281) started a stavudine-containing regimen, mainly using the adult fixed-dose combination. The median follow-up time after ARV initiation was 2 years (interquartile range 1.2–2.6). Eighty-four percent (n = 265) of children were still on treatment in the program. Thirty (9.5%) were transferred out, eight (2.6%) died and 12 (3.8%) were lost to follow-up. An important feature of the study was that viral loads were done at a median time period of 18 months after starting ARVs and were available for 87% of the children. Of the 174 samples, VL was < 400 copies/ml in 82.8% (n = 144). Two children were started on second-line ARVs. Treatment was changed due to toxicity for 26 children (8.3%), mainly related to nevirapine.
This report suggests that providing ARVs to children in a health center/nurse-based program is both feasible and very effective. Adequate numbers and training of nursing staff and an emphasis on the psychosocial needs of caregivers and children have been key elements for the successful scaling-up of ARVs at this level of the health system.
Describe burden, skills preparedness, and QOL for caregivers of patients with NSCLC, and describe how findings informed the development of a caregiver palliative care intervention that aims to reduce caregiver burden, improve caregiving skills, and promote self-care.
One NCI-designated comprehensive cancer center in Southern California.
A total of 163 family members or friends who were 18 years or older and identified by patients as being the caregiver were accrued.
All eligible caregivers were approached by advance practice nurses (APNs) during a regularly scheduled patient clinic visit. Informed consent was obtained prior to study participation. Outcome measures were completed at baseline and repeated at 7, 12, 18, and 24 weeks. Descriptive statistics were computed for all variables, and one-way repeated measures Analysis of Variance (ANOVA) was used to test for change over time for all predictor and outcome variables.
Main Research Variables
Caregiver burden, skills preparedness, psychological distress, and QOL.
Caregivers were highly functional. Caregiver burden related to subjective demands increased significantly over time. Perceived skills preparedness was high at baseline, but decreased over time. Psychological distress was moderate but increased over time. Overall QOL was moderate at baseline, and decreased significantly over time. Psychological well-being had the worst QOL score.
Caregivers experienced high levels of caregiver burden, and report deteriorations in psychological well-being and overall QOL over time.
Implications for Nursing
Oncology nurses need to ensure that caregivers receive information that supports the caregiving role throughout the cancer trajectory.
To assess the needs of informal caregivers of terminally ill cancer patients.
Materials and Methods:
Fifty four informal caregivers of patients registered in our palliative care service were interviewed 3–6 months after the death of the patient with the help of a semistructured questionnaire covering the physical, medical, psychological, social, and information domains.
Most of the caregivers were middle aged and had no prior experience of care giving. The caregivers were satisfied by the information and medical support provided to them by their treatment team. Most had an “emergency plan”. Caregivers had unmet needs including homecare, psychological support, and financial help.
informal caregivers provide most of the nursing and psychological support to the patient. However, palliative care services need to recognize that the caregiver too may need psychological and technical support.
Cancer; India; Informal caregiver; Needs; Terminally ill
La familia drives elder care in Mexican–American (MA) families, but nursing home placement can result from day-to-day caregiving demands that increase caregiver difficulty with activities of daily living (ADLs). Using life course perspective, this article describes the initial data wave of 31 MA caregivers from a descriptive, longitudinal, mixed-methods study of 110 MA caregivers and care recipients over 15 months in their caregiving trajectories. Fifteen of 31 caregivers consistently indicated “no help needed” on the Katz ADL, whereas all but one reported “help needed” during semistructured interviews with cultural brokers. In addition to the discrepancy between results on the Katz ADL and interviews, findings include consideration of nursing home placement by moderately acculturated caregivers and minimization of their illnesses by caregivers. Additional methods of MA caregiver assessment may be needed due to the questionable accuracy of the Katz ADL; additional research should explore minimization and acculturation in MA caregivers.
family caregivers; Mexican-American; activities of daily living; minimization
To assess the perceived needs of African-American caregivers and their expectations of the health care system, perceived level of success and satisfaction in meeting their needs, and their level of distress, we convened two focus groups at a local church in Oklahoma City, OK to discuss three questions. Responses were qualitatively analyzed for common themes. The groups comprised 13 African-American caregivers of demented elders. All participants completed a demographic form, the Zarit Burden Interview, and the Depression Scale. We found that African-American caregivers are frustrated with health care and service providers. The main differences of this group compared with other caregivers were their perceptions of racism and the absence of an available local support group. This information can serve to guide future studies in developing ways to increase caregiver satisfaction, decrease caregiver stress, and increase patient quality of life for this subgroup of caregivers.
The rate of use of nursing-care services has been increasing dramatically in recent years with the upgrading of the public long-term care insurance system in Japan. We addressed how the increased use of the nursing-care services might affect the information on the patients provided by their caregivers.
A questionnaire survey of 531 family caregivers caring for dementia patients at home was carried out to investigate how the use of these services might affect the information about the patients provided by the caregivers. The survey revealed that the use of the nursing-care services reduced the burden (quality, quantity, time of nursing care, and feeling) on the caregivers.
According to the observation provided by the caregivers, the patients’ behaviors and activities at home tended to decrease. These results indicated that the use of the nursing-care services resulted in a reduction in the opportunity for and the time spent on observation of the patients by the caregivers, making it more difficult for the caregiver to provide an appropriate assessment of the patient's condition.
We discussed the impact of the use of the nursing-care services on the Clinician's Interview-Based Impression of Change plus (CIBIC-plus) rating. Due to the reduction in the time spent on nursing care and in the opportunity for observation of the patient's activities of daily living by the caregiver resulting from the use of the nursing-care services, it is difficult to obtain an accurate picture of the patient's clinical condition using the CIBIC-plus, probably leading to an inappropriate CIBIC-plus rating.
Alzheimer's disease; Caregivers; CIBIC-plus; Dementia; Nursing-care burden; Nursing-care insurance program; Nursing-care service
The objective of this study was to identify characteristics of informal caregivers, caregiving, and people with multiple sclerosis (MS) receiving this assistance that are associated with the strength of the care-giver/care recipient relationship. Data were collected in a national survey of informal caregivers and analyzed using an ordered logistic regression model to identify factors associated with caregiver perceptions of the strength of the relationship with the person with MS. The overall health of the person with MS was significantly associated with caregiver perceptions that providing assistance strengthened the caregiver/care recipient relationship, with poor health having a negative impact on the relationship. A spousal relationship between the caregiver and the person with MS was associated with significantly lower perceptions of a strengthened relationship. Conversely, caregiver perceptions that MS symptoms interfered with the independence of the person with MS in daily life were associated with caregiver perceptions of a strengthened relationship. Longer duration of caregiving and more hours per week spent providing assistance also were associated with a stronger relationship. In contrast, we found a significant negative association between caregiver perceptions that assisting the person with MS was burdensome and the strength of the relationship. Similarly, higher levels of education among caregivers tended to have a significantly negative impact on the caregiver/care recipient relationship. Our findings highlight the importance of addressing the needs and concerns of spousal caregivers. Health professionals who treat informal caregivers, as well as those treating people with MS, should be sensitive to the impact caregiving has on caregivers, especially spouses providing assistance.
Family doctors have been ascribed a role in monitoring patients and their informal caregivers. Little is known about the factors that might alert physicians to changing circumstances or needs of the caregivers. The study objective was to examine changes in family caregivers' quality of life following an emergency department (ED) visit by an older community-dwelling relative that might cue doctors to subsequent caregiver distress.
A longitudinal study with follow-up at 1- and 4-months was conducted in the EDs of 4 hospitals in Montreal, Canada. Caregivers reported on demographics and quality of life (SF-36). Patients reported on demographics and functional disability. Multiple linear regression for repeated measures was used to evaluate changes in caregiver quality of life and factors related to these changes.
159 caregivers (60.5 yrs ± 15.8%; 73.0% female), including 68 (42.8%) spouses, 60 (37.7%) adult children, and 31 (19.5%) other relatives participated. Following an initial ED visit by older relatives, caregiver general health and physical functioning declined over time, while mental health status improved. Compared to the other relative caregiver group, spouses were at increased risk for decline in general health, mental health, and physical functioning at 1 month, while adult children were at increased risk for decline in physical health at 1 month.
Spouses were most at risk for decline in quality of life. Primary care physicians who become aware of an ED visit by an elderly person may be alerted to possible subsequent deterioration in family caregivers, especially spouses.
The objective of this study was to identify characteristics of informal caregivers and people with multiple sclerosis (MS) receiving assistance that are associated with the caregiver's perceived need for mental health care. Survey data were collected in interviews with 530 caregivers and analyzed using a logistic regression model. We found that older caregiver age significantly decreased the odds of caregivers' perceived need for mental health treatment. Better mental health domains of health-related quality of life among caregivers, as measured by the 8-item Short Form Health Status Survey (SF-8), also were associated with decreased odds of the need for mental health care. In contrast, the caregiver's feeling that providing assistance was emotionally draining or the belief that this assistance threatened the caregiver/care recipient relationship significantly increased the odds of caregivers' needing mental health treatment. Health professionals treating informal caregivers should be sensitive to the impact that providing assistance has on the emotions, relationships, and mental health needs of caregivers.
Stroke caregivers often express the need for information about stroke and assistance with stroke-related care in the early discharge period. The Telephone Assessment and Skill-Building Kit (TASK) is an 8-week program that addresses caregiver needs. This study explored the efficacy of the TASK program in improving stroke caregiver outcomes.
Guided by a conceptual model, 6 outcomes (optimism, task difficulty, threat appraisal, depressive symptoms, life changes, general health perceptions) were measured in 40 caregivers randomized to the TASK (n = 21) or an attention control group (n = 19). Data were analyzed using analysis of covariance (ANCOVA), controlling for baseline scores and minutes spent with the nurse.
Significant increases in optimism at 4 weeks, 8 weeks, and 12 weeks were found, with medium effect sizes for the TASK group relative to the control group (p < .05). Significant improvements in task difficulty at 4 weeks, and threat appraisal at both 8 weeks and 12 weeks were also found (p < .05).
Caregivers receiving the TASK intervention improved in optimism, task difficulty, and threat appraisal. Further testing of an enhanced version of the TASK program is warranted, with attention directed toward more distal stroke caregiver outcomes.
clinical trial; depression; family caregivers; health; intervention studies; outcomes; quality of life; stroke; stress
This study examines the influence of race on perceived similarity and conflict between nursing home staff and family members of residents. Despite evidence that the caregiving experience varies by race for both family and professional caregivers, little is known about how race plays a role in staff conflict with residents’ family members.
We used a representative sample of Certified Nursing Assistants (CNAs) to test relationships between race, treatment from family members, similarity to family members in expectations for care by CNAs, and conflicts with family members concerning aspects of resident care.
Results of structural equation modeling indicated that race was not a predictor of staff perception of conflict with family members or of poor treatment from residents’ families. However, Black nursing assistants were more likely to perceive that their own expectations of nursing care are dissimilar from those of residents’ family members. Dissimilarity predicted reports of poor treatment from family members, and poor treatment was a positive predictor of perception of conflict.
The personal long-term nature of nursing home care necessitates a high level of connectedness between family caregivers and nursing home staff. Results highlight the importance of establishing organizational pathways for communication of expectations between nursing staff and residents’ families.
conflict; long-term care; race
This study assessed the caregiving activities and training interests of family caregivers of medically ill older adults without dementia who receive home health care.
Participants were 101 family caregivers of patients from the Training in the Assessment of Depression (TRIAD) study. Caregivers were assessed using a sociodemographic questionnaire and measures of caregiver tasks and training interest.
Family caregivers provided a variety of caregiving tasks and their interest in training was independent of current provision of tasks. Black caregivers expressed greater overall interest in receiving training than did White caregivers, as did younger caregivers compared to same-generation caregivers.
Family caregivers in this study evidenced both a range of care provision and clear interest in improving caregiving skills through training. Research efforts should focus on meeting the specific training needs of family caregivers and determining the impact training can have on patient health outcomes.
family; caregivers; home health care; training interest; assessment
Unlike professional caregivers such as physicians and nurses, informal caregivers, typically family members or friends, provide care to individuals with a variety of conditions including advanced age, dementia, and cancer. This experience is commonly perceived as a chronic stressor, and caregivers often experience negative psychological, behavioral, and physiological effects on their daily lives and health. In this report, we describe the experience of a 53-yearold woman who is the sole caregiver for her husband, who has acute myelogenous leukemia and was undergoing allogeneic hematopoietic stem cell transplantation. During his intense and unpredictable course, the caregiver's burden is complex and complicated by multiple competing priorities. Because caregivers are often faced with multiple concurrent stressful events and extended, unrelenting stress, they may experience negative health effects, mediated in part by immune and autonomic dysregulation. Physicians and their interdisciplinary teams are presented daily with individuals providing such care and have opportunity to intervene. This report describes a case that exemplifies caregiving burden and discusses the importance of identifying caregivers at risk of negative health outcomes and intervening to attenuate the stress associated with the caregiving experience.
Oncology patients often experience breakdowns in care when transitioning between care settings.
Aims and objectives
To examine the experience of oncology patients at the transition between hospital and community care and identify factors which affect fragmentation.
We used a complementary mixed method approach. Qualitative phase: semi-structured interviews and focus groups were conducted with patients and their caregivers, nurses, social workers, physicians and medical administrators. Quantitative phase: a survey was administered to 400 oncology patients of a large tertiary medical center in Northern Israel. Patients who were discharged from the hospital completed a validated questionnaire on their transition from the hospital to the community and on their perceptions of the quality of their primary care. The surveys were administered in Hebrew, Arabic, and Russian.
From the preliminary analysis of the qualitative data four broad themes emerged: (1) responsibility for care, (2) administrative and bureaucratic burden, (3) informal routes of communication, and (4) cultural barriers. The regression analyses examined the effect of patient characteristics (gender, age, education, income, health status, and language group) and showed that patients' language accounted for most of the variance in quality scores. Russian speaking patients reported poorer quality of care and Arabic speaking patients reported better quality of care, than Hebrew speakers, in all primary care domains. Both Arabic and Russian speakers scored significantly higher on the Care Transition Measure than Hebrew speakers.
The differences between sub-groups found here suggest that avoidable variations in care exist. To enable a more streamlined process, cultural issues need to be addressed at the interface between care settings. Further research should examine the causes for such differences.
oncological care; quality of care; transition; hospital care; primary care; Israel