Caregiver care

In 2009, nearly 66 million Americans (three in 10 U.S. households) reported at least one person providing unpaid care as a family caregiver. More adults with chronic conditions and disabilities are living at home than ever before, and family caregivers have an even higher level of responsibility. Caring for loved ones is associated with several benefits, including personal fulfillment. However, caregiving is also associated with physical, psychological, and financial burdens. Primary care physicians can aid in the identification, support, and treatment of caregivers by offering caregiver assessments-interviews directed at identifying high levels of burden-as soon as caregivers are identified. Repeat assessments may be considered when there is a change in the status of caregiver or care recipient. Caregivers should be directed to appropriate resources for support, including national caregiving organizations, local area agencies on aging, Web sites, and respite care. Psychoeducational, skills-training, and therapeutic counseling interventions for caregivers of patients with chronic conditions such as dementia, cancer, stroke, and heart failure have shown small to moderate success in decreasing caregiver burden and increasing caregiver quality of life. Further research is needed to further identify strategies to offset caregiver stress, depression, and poor health outcomes. Additional support and anticipatory guidance for the care recipient and caregiver are particularly helpful during care transitions and at the care recipient's end of life.     

Improving well-being in caregivers of terminally ill patients. Making the case for patient suffering as a focus for intervention research

Family caregivers are integral to the care of patients with physical or mental impairments. Unfortunately, providing this care is often detrimental to the caregivers' health. As a result, in the last decade, there has been a proliferation of interventions designed to improve caregivers' well-being. Interventions for caregivers of persons at end of life, however, are relatively few in number and are often underdeveloped. They also are typically designed to help reduce the work of caregiving or to help caregivers cope with the physical and emotional demands of providing care. Although useful, these interventions generally ignore a primary stressor for family caregivers -- a loved one's suffering. Patient suffering, whether physical, psychosocial, or spiritual, has a major impact on family caregivers. However, interventions that focus on the relief of patient suffering as a way to improve caregiver well-being have rarely been tested. It is our view that more research in this area could lead to new and more effective interventions for family caregivers of seriously or terminally ill patients. In support of our view, we will define suffering and review the relationships between patient suffering and caregiver well-being. We will then discuss a conceptual framework for intervention design. Finally, we conclude with a discussion of implications and future directions for intervention research.     

Family caregivers of patients with frontotemporal dementia: An integrative review

ObjectivesThe purpose of this integrative review is to: (1) identify the characteristics of family caregivers of patients with frontotemporal dementia, (2) explore the impact of providing care on family caregivers’ health and well-being, and (3) identify coping strategies used by family caregivers.BackgroundFrontotemporal dementia is thought to be the second most common form of dementia after Alzheimer's disease. Family caregivers of patients with frontotemporal dementia face unique challenges due to its early onset, behavioral symptoms, and slow progression of decline. However, there is a dearth of research evaluating the health and wellbeing of family caregivers of patients with frontotemporal dementia.Design and data sourcesAn integrative review was conducted using the Whittemore and Knafl methodology. An electronic search of the literature was conducted using four electronic databases: PubMed, Embase, CINAHL, and Web of Science. The Crowe Critical Appraisal tool was used to evaluate the quality of the selected articles.ResultsFindings of 11 articles informed this integrative review. Family caregivers of patients with frontotemporal dementia identify behavioral disturbances as most troubling. Spouses and female caregivers experience greater caregiver burden, distress, increased rates of depression, as well as decreased sleep related to behavior disturbances. Though less explored, providing care to those with behavioral disturbances may also impact caregiver physical health. Additionally, female caregivers are most likely to employ coping strategies, most commonly, adaptation and reframing. Effective interventions to reduce family caregiver burden are poorly understood but family caregivers suggest education and internet-based support groups are most helpful.ConclusionsFamily caregivers of patients with frontotemporal dementia experience significant distress, which impacts their health and wellbeing. It is important for healthcare providers who care for patients with frontotemporal dementia to recognize the unique needs of family caregivers. Future research should focus on examining interventions and strategies to reduce caregiver burden.     

Family Caregiver Quality of Life: Differences Between Curative and Palliative Cancer Treatment Settings

To compare the impact of cancer caregiving in curative and palliative settings on family caregiver quality of life (QOL), 267 family caregivers of cancer patients receiving curative treatment were compared to 134 family caregivers of cancer patients receiving palliative treatment through hospice. Both groups completed a demographic profile in addition to two self-report QOL questionnaires. Patient performance status and disease site were also recorded. Family caregivers of patients receiving palliative care had significantly lower QOL scores and lower scores on physical health. Hierarchical multiple regressions showed that after accounting for patient performance status, treatment status accounted for no additional significant variability in QOL scores. After accounting for caregiver level of education, treatment status accounted for no additional significant variability in physical health. These results suggest that the lower QOL scores of caregivers in the palliative setting are a reflection of the patients’ poorer performance status. The lower physical health scores of caregivers in the palliative setting appear to be a reflection of their lower educational level. Additional research is needed to evaluate the influence of specific demands of caregiving and emotional distress of the caregiver on caregiver QOL. J Pain Symptom Manage 1999;17:418–428.     

Support interventions for caregivers of physically disabled adults: A systematic review

In developing countries family caregivers are an important community‐based resource who provide care for physically disabled adults. Substantial caregiving commitment is known to adversely affect caregiver health and thereby their capacity to provide ongoing care. This systematic review focused on support interventions for caregivers using Thailand as an example. From 1964 to 2011 international and Thai electronic databases and relevant grey literature were searched. Six English papers and 34 Thai papers published between 1990 and 2010 were found. The Critical Appraisal Skills Programme (CASP) tool was modified to appraise methodological quality. All nurse‐led interventions mainly focused on improving caregiving capacity; nearly half considered caregiver health. Only 15 interventions were community‐based. Despite variable research quality all studies showed benefits for caregivers, care recipients, and healthcare services. In developing countries without healthy caregivers physically disabled adults would not receive care. There is an urgent need for further investment in community‐based research to develop effective interventions designed to promote caregiver health and help them maintain their role.     

Dealing With the Unthinkable: Bladder and Colorectal Cancer Patients’ and Informal Caregivers’ Unmet Needs and Challenges in Life After Ostomies

ObjectivesWe examined patient and informal caregiver unmet needs to identify areas for targeted supportive care interventions and programs to enhance both patient and informal caregiver experience.Data SourcesA total of 30 patients who underwent ostomy surgeries for bladder or colorectal cancers and 13 informal caregivers participated in the study. Patients were enrolled at the Icahn School of Medicine at Mount Sinai between 2017 and 2018. Qualitative data were collected by individual interviews, audiotaped, and transcribed verbatim. Transcribed data were iteratively analyzed using Atlas.ti to explore patient and caregiver unmet needs.ResultsPatients and informal caregivers reported having insufficient psychological preparation for ostomy surgeries, and very limited hands-on training on stoma care and utility of stomal appliances. Unmet psychological needs related to depression, anxiety, and distress caused by changes in body image and sexual, urinary, and bowel function were reported. Patients and caregivers also reported significant patient medical needs in the acute postoperative period including pain, fatigue, sleep disturbance, inflammation, and complications resulting in hospital readmissions. Colorectal cancer patients specifically experienced significant challenges with changes in diet and nutrition that contributed to ostomy care burden. Both patients and caregivers recommended seeking psychological and social support to enhance both patient and caregiver emotional adjustment to life after ostomies.ConclusionMeeting patient and informal caregiver unmet informational and supportive care needs is imperative to improve their quality of life and adjustment.Implications for Nursing PracticeAn effective supportive care plan should be designed and utilized in clinical care to improve ostomy patients’ and caregivers’ outcomes.     

Rethinking Intervention Strategies in Stroke Family Caregiving

Stroke is a condition that affects both patients and family members who provide care and support. Because stroke is an unexpected traumatic event that suddenly forces family members into a caregiving role, caregivers often experience an overwhelming sense of burden, depression, and isolation; a decline in physical and mental health; and reduced quality of life. Caregiver health is inextricably linked to a stroke survivor's physical, cognitive, and psychological recovery. Evidence suggests that informational interventions alone are not as effective in meeting the complex needs of stroke caregivers as interventions that combine information with other support services. This article discusses issues related to stroke caregiving and proposes comprehensive strategies designed to meet the poststroke recovery needs of both patients and caregivers. Suggested strategies include a comprehensive assessment specific to caregiver needs, skills, and resources and case management services designed to provide continuity of care across the stroke‐recovery trajectory.     

Distress and quality of life concerns of family caregivers of patients undergoing palliative surgery

There has been limited research in the field of palliative care and even far less focus on the area of palliative surgery. Although patient needs are paramount, family caregivers require information and support at the time surrounding surgery for advanced disease. The aim of this prospective cohort study of family caregivers of patients with advanced malignancies was to measure the impact of palliative surgery on dimensions of quality of life (QOL) for these family members. Family caregivers completed assessment tools preoperatively and at approximately 3 weeks and 2 and 3 months postoperatively. Parameters of physical, psychological, social, and spiritual QOL were measured on a scale of 0 (poor) to 10 (good) using the City of Hope QOL-Family instrument. Caregivers recorded their general distress on the Distress Thermometer using a scale of 0 (none) to 10 (severe). Analysis of the data revealed that family caregivers had disruptions similar to patients in physical, psychological, social, and spiritual dimensions of QOL. Findings suggest that caregivers should be assessed for distress and QOL concerns both before and after surgery for patients with advanced malignancies. Although caregiver concerns cannot always be eradicated, resources and interventions to support family caregivers are vital to improving QOL.     

Preparing caregivers for the death of a loved one: a theoretical framework and suggestions for future research

Caring for a terminally ill loved one and the death of that person are two of the most stressful human experiences. Recent research suggests that a substantial number of caregivers are unprepared for the death and that these caregivers may be at greater risk of psychological distress. The literature on preparedness and mental health, however, is in its infancy. The purpose of this paper, therefore, is to summarize the literature in order to stimulate discussion and research on preparedness. It is our view that preparedness for the death of a loved one is an important contributor to caregiver well-being and bereavement outcomes and that more work in this area is needed in order to improve the care provided to caregivers of seriously or terminally ill patients. We briefly review the literature on preparedness, present a theoretical model delineating the relationships between preparedness, caregiver-health care provider communication, and caregiver well-being, and provide suggestions for future research.     

Caregiver Reactions to Dementia Symptoms: Effects on Coping Repertoire and Mental Health

ABSTRACT

Currently, 15 million informal caregivers, most of whom are women, provide care for older adults with dementia (Alzheimer's Disease Association, 2016). Caregiving for these individuals often creates distress and may adversely affect female caregivers' psychosocial and spiritual well-being. Approximately 35% of dementia caregivers complain of health deterioration after initiating caregiving responsibilities as compared to 19% of caregivers of older adults who do not have dementia (Alzheimer's Disease Association, 2016). Persons with dementia exhibit symptoms and behaviors that often are challenging for their caregivers. The way that caregivers react to these symptoms and behaviors may affect their coping repertoire and their mental health. Adequate evaluation of caregiver reactions to symptoms of dementia will provide information useful for developing targeted interventions to promote optimal health of female dementia caregivers and to potentially postpone the need for nursing home or long-term placement of the care recipient.     

Predictors of Quality of Life in Elderly Hospice Patients with Cancer

PURPOSE: While quality of life is the focus of care in hospices, limited research has been conducted on the quality of life of cancer patients in hospice home care. The purpose of this study was to explore the predictors of quality of life of older adults who are receiving hospice care in their homes. METHODS: A secondary analysis of data from a larger study was conducted using linear regression and including the following predictor variables: age, functional status, number of symptoms endorsed, overall symptom distress, pain intensity, and depressive symptoms. The outcome variable was quality of life. RESULTS: The sample consisted of 533 adults with an average age of 78.1 years (SD=7.4). A regression model that included symptom distress, number of symptoms, depression, and functional status accounted for 46% of the variance in quality of life. Pain, age, and caregiver depression did not contribute to predicting quality of life and therefore were not included in the final model. CONCLUSIONS AND IMPLICATIONS: Because both physical symptoms and depression are predictors of quality of life, a continued focus is needed on these factors by those providing care to older adults with cancer near the end of life.     

Management of Pediatric Febrile Seizures

Febrile seizures are the most common seizure disorder. Febrile seizures are frightening to witness, and therefore caregiver education is paramount to help relieve anxiety levels. Acknowledgment of this concern by pediatric health care providers is needed to understand the importance of education, reassurance, and anticipatory guidance for caregivers. This article aims to discuss the assessment, diagnosis, and management of febrile seizures for the nurse practitioner based on the most current literature. Through appropriate clinical interventions, anticipatory guidance, and caregiver education, the nurse practitioner can substantially increase the comfort of the patients and their caregivers.     

Patient-centered and efficacious advance care planning in cancer: Protocol and key design considerations for the PEACe-compare trial

BackgroundFailure to deliver care near the end of life that reflects the needs, values and preferences of patients with advanced cancer remains a major shortcoming of our cancer care delivery system.MethodsA mixed-methods comparative effectiveness trial of in-person advance care planning (ACP) discussions versus web-based ACP is currently underway at oncology practices in Western Pennsylvania.Patients with advanced cancer and their caregivers are invited to enroll. Participants are randomized to either (1) in-person ACP discussions via face-to-face visits with a nurse facilitator following the Respecting Choices® Conversation Guide or (2) web-based ACP using the PREPARE for your care™ web-based ACP tool. The trial compares the effect of these two interventions on patient and family caregiver outcomes (engagement in ACP, primary outcome; ACP discussions; advance directive (AD) completion; quality of end-of-life (EOL) care; EOL goal attainment; caregiver psychological symptoms; healthcare utilization at EOL) and assesses implementation costs. Factors influencing ACP effectiveness are assessed via in-depth interviews with patients, caregivers and clinicians.DiscussionThis trial will provide new and much-needed empirical evidence about two patient-facing ACP approaches that successfully overcome limitations of traditional written advance directives but entail very different investments of time and resources. It is innovative in using mixed methods to evaluate not only the comparative effectiveness of these approaches, but also the contexts and mechanisms influencing effectiveness. Data from this study will inform clinicians, payers and health systems seeking to adopt and scale the most effective and efficient ACP strategy in real-world oncology settings.     

Caregiver burden among dementia patient caregivers: a review of the literature

Purpose: To identify current evidence of factors influencing dementia-related caregiver burden (CB), describe patient and caregiver characteristics associated with CB, and describe evidence-based interventions designed to lessen the burden of caregiving.
Data sources: Comprehensive literature review of Cumulative Index of Nursing and Allied Health Literature, MEDLINE, and Psych Info was performed for the years 1996–2006 of peer-reviewed journals using keywords CB and dementia.
Conclusion: Dementia caregiving has been associated with negative effects on caregiver health and early nursing home placement for dementia patients. Many factors influence the impact of the caregiving experience such as gender, relationship to the patient, culture, and personal characteristics. Although various interventions have been developed with the goal of alleviating CB, evidence suggests that individually developed multicomponent interventions including a diversity of services will decrease burden, improve quality of life, and enable caregivers to provide at-home care for longer periods prior to institutionalization.
Implications for practice: The ability to properly assess the dementia patient–caregiver dyad related to CB is critical to decreasing its negative physical and psychological health outcomes. Appropriately tailored interventions can improve the health and well-being of both caregiver and patient.     

Family care for the older person with cancer

OBJECTIVES: To describe the needs of family members of older persons undergoing cancer treatment and to examine the interventions designed to alleviate caregiver distress. DATA SOURCES: Research studies and published articles. CONCLUSION: Interventions to reduce distress for caregivers of older persons with cancer have the potential to lower patients' hospital re-admissions and interruptions in cancer treatment and to improve patients' and caregivers emotional health. IMPLICATIONS FOR NURSING PRACTICE: Oncology practitioners must consider the needs of family caregivers when planning and implementing interventions to improve or maintain caregiver health.     

Efficacy of behavioral interventions for dementia caregivers

Behavioral symptoms of Alzheimer's disease, particularly agitation, appear to be a major contributing factor to the emotional distress exhibited by family caregivers. Psychosocial interventions have been shown to reduce caregiver emotional distress, but few studies have examined the efficacy of these interventions with caregivers exposed to high levels of dementia-related behavioral symptoms. The purpose of this study is to test the efficacy of a caregiver skill building intervention in reducing emotional distress to agitated behaviors of care recipients. This study analyzed data from a subgroup of caregivers who participated in a larger randomized clinical trial (N = 295). Data from 143 caregivers of family members with baseline agitated behaviors indicate that the skill building intervention was more effective than an information and support oriented comparison condition in reducing emotional distress over an 18-month period. These findings indicate that dementia caregivers exposed to agitated behaviors can benefit from psychosocial interventions, particularly those aimed at building behavioral management skills.     

Associations Between Hospice Care and Scary Family Caregiver Experiences

ContextHospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations.ObjectivesTo examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life.MethodsSecondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale.ResultsHospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers.ConclusionHospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.     

Chronic renal failure: assessing the Fatigue Severity Scale for use among caregivers

Background. Quality of life for caregivers of end‐stage renal disease patients has not been well addressed yet the physical and psychological status of this overlooked group can be important in the recovery or adaptation of patients with chronic renal failure, not to mention the caregivers themselves. One particular feature of the overall quality of life of such caregivers is that of fatigue. Aims and objectives. The purpose of the study was to test the Fatigue Severity Scale for potential usefulness in assessing fatigue among a non‐medical population, caregivers of end‐stage renal disease patients. Methods. Subjects completed a short battery of measures at either a dialysis centre or at home. Results. The Short Form‐12 of the Short Form‐36 and the Center for Epidemiologic Studies Depression Scale accounted for 56% of the variance on the Fatigue Severity Scale. The results suggest that physical fatigue may be more prominent than mental fatigue as a feature of caregiver quality of life. Conclusions. The Fatigue Severity Scale which has been used for multiple sclerosis patients may prove to be useful as a short assessment of fatigue among the non‐medical population of end‐stage renal disease caregivers. This may result in improved interventions for the population of caregivers. Relevance to clinical practice. Physicians, nurses and allied health professionals will be called on more frequently to assess and intervene with fatigued and overburdened caregivers in addition to patients themselves. A more thorough understanding of the nature of caregiver fatigue may drive changes or innovations with caregivers who are too often overlooked in the current era of scarce resources. Accordingly results of the study suggest that the direction in intervention may focus more on rest and respite as opposed to a need for psychosocial support or counselling. While there are various modes for assessing end‐stage renal disease caregivers’ fatigue, a simple measure like the Fatigue Severity Scale is brief enough to be administered without undue demand on practitioners or caregivers.     

Children's health promotion through caregiver preparation in pediatric brain injury settings: compensating for shortened hospital stays with a three-phase model of health education and annotated bibliography

Shorter hospital and rehabilitation stays in cases of pediatric brain injury necessitate greater preparation and training of family caregivers, who often will be responsible for complex and continued care at home. At the same time, a growing nursing shortage results in less available time for individualized, one-on-one caregiver education in medical settings prior to discharge. What is needed are innovative models of caregiver preparation and education that are comprehensive, systematic, and maximize the use of health professionals' limited time. The model presented here aims to provide a progressive three-phase model of caregiver education that makes efficient use of health professionals' time and delivers crucial information in a time-released manner throughout the entire continuum of care under the guidance of health professionals. An annotated bibliography of published caregiver education resources and the appropriate time for their delivery to family members is provided in the Appendix.