The development and testing of a multidimensional instrument to assess the reactions of family members caring for elderly persons with physical impairments, Alzheimer's disease, and cancer is reported. Forty items were administered to a sample of 377 caregivers of persons with physical impairments and Alzheimer's disease. Five dimensions of caregivers' reactions were identified through exploratory factor analysis. Using confirmatory factor analysis on an independent sample (N = 377), these dimensions were tested for factorial invariance across spouse and nonspouse caregivers and between caregivers of persons with cancer and those caring for persons with Alzheimer's disease. The subscales also had a high level of factorial invariance across a three-wave panel study (N = 185). The subscales appeared consistent with first order tests of construct validity.

Recommendations for practice include development of standardized guidelines that address caregiver assessment, education, and resources; identification of "caregiver champions" in practice settings; provision of referrals to established support organizations for caregivers (eg, Cancer Support Community, Cancer Care); and collaboration among caregiving, professional, and cancer-related organizations to advocate policy and practice changes for family caregivers.

Changes in the health care system have resulted in a shift of cancer care from the in-patient arena to ambulatory and home settings. This shift has likewise translated into increased family involvement in the day-to-day care of the person with cancer. Cancer patients have multifaceted needs, including disease and treatment monitoring, symptom management, medication administration, emotional support, assistance with personal care, and assistance with instrument care. Family caregivers may be ill prepared to assume these tasks, requiring information on the disease and treatment, as well as instruction in technical and care skills.Moreover, caregiving must be balanced against already established roles and role responsibilities. In addition, family caregivers have their own emotional responses to the patients' diagnosis and prognosis, and may require coaching and emotional support themselves.The health care system can facilitate positive outcomes by embracing the family caregiver as a partner in the health care team, providing instruction and guidance to the caregiver as he/she assumes this role, and evaluating the home care situation. Research to date has only scratched the surface of testing interventions that meet the needs of the cancer caregiver.A research agenda is proposed to more fully elucidate the cancer caregiver's experience throughout the illness and treatment trajectory, and identify the means to effecting positive outcomes for the person with cancer, their family caregiver, and the health care system. (CA Cancer J Clin 2001;51:213-231 Family members may need to devote more time to caring for their patient and often react to the strains that patient care introduces into their daily lives. Most pressing, however, will be concerns about the patient: How to maintain comfort, how to manage equipment, and when to report changes in their patient's status. Moreover, family members may be concerned about their abilities to balance the demands of care with other responsibilities and wonder what the immediate future will be like for them and their patient with advanced cancer.It is against this backdrop that the support needed by family caregivers for persons with advanced cancer should be viewed. The role of family caregivers has shifted from one of custodial care to a complex, multifaceted role that includes symptom management, monitoring for changes in hallmark symptoms, equipment care (e.g., infusion pumps or IVs), patient transport and advocacy, and management of activities/responsibilities the patient has foregone because of illness. Due to advances in treatment, the cancer care trajectory has increased from days and weeks to months and years. Few Strategies for Family CareTo date, the oncology care system has not fully incorporated "family care" for patients at home. There are few documented, effective strategies to guide family members caring for patients with advanced cancer. The absence of strategies persists despite the fact that burden and distress on family caregivers has been studied since...

Purpose/Objectives-The purpose of the study was to examine the patient and family caregiver variables that predicted caregiver burden and depression for family caregivers of patients with cancer at the end-of-life.Design-A prospective, longitudinal study was implemented with an inception cohort of patients and their family caregivers who were followed after the diagnosis and treatment of cancer. Data were analyzed using quantitative methods to determine the effect of caregiver age, sex, education, relationship to the patient, employment status, reports of patients' symptoms, patient cancer type, stage of cancer, and time from the patient's diagnosis to death on caregiver burden and depression at the patient's end-of-life. This report examines the experiences of family caregivers whose patients died during the study. Setting-Patients and caregivers were accrued from community oncology sites in the Midwestern United States.Sample-152 family caregivers of patients with cancer who died during the course of the study.Methods-Telephone interviews with patients were conducted at 6-8 weeks, 12-16 weeks, 24-30 weeks, and 52 weeks following patients' diagnoses. In addition, patient medical records and state death certificates were reviewed.Findings-Caregivers aged 45-54 reported the highest levels of depressive symptoms; caregivers aged 35-44 reported the strongest sense of abandonment. Caregivers who were the adult children of patients with cancer and who were employed reported high levels of depressive symptoms. Feeling abandoned (a portion of caregiver burden) was more prevalent in female, non-spouse, and adult

Objective The decade from 2000–2010 was an era of tremendous growth in family caregiving research specific to the cancer population. This research has implications for how cancer family caregiving is conceptualized, yet the most recent comprehensive model of cancer family caregiving was published ten years ago. Our objective was to develop an updated and expanded comprehensive model of the cancer family caregiving experience, derived from concepts and variables used in research during past ten years. Methods A conceptual model was developed based on cancer family caregiving research published from 2000–2010. Results Our updated and expanded model has three main elements: 1) the stress process, 2) contextual factors, and 3) the cancer trajectory. Emerging ways of conceptualizing the relationships between and within model elements are addressed, as well as an emerging focus on caregiver-patient dyads as the unit of analysis. Conclusions Cancer family caregiving research has grown dramatically since 2000 resulting in a greatly expanded conceptual landscape. This updated and expanded model of the cancer family caregiving experience synthesizes the conceptual implications of an international body of work and demonstrates tremendous progress in how cancer family caregiving research is conceptualized.

Purpose 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. Method 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. Results 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). Conclusion 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.

Using data obtained from an inception cohort of 841 patients aged 65 or older newly diagnosed with breast, colon, lung, or prostate cancer, and observed at 6-8, 12-16, 24-30, and 52 weeks, three questions related to patients' experiences with pain and fatigue were posed. First, how do numbers of patients reporting neither pain nor fatigue, either symptom, or both change during the observation year? Second, did number of comorbid conditions, site and stage of cancer, treatment modalities, symptom management medication, and time affect the presence of these two symptoms? Third, do pain and fatigue predict the numbers of co-occurring other symptoms? Findings indicate that during the year patients improved with respect to their reports of pain and/or fatigue. Stage, more comorbidity, and lung cancer were related to both pain and fatigue. Chemotherapy was related to reports of fatigue, but did not have an extended effect on fatigue.

Although investigators have identified rewards and difficulties from assuming the role of caregiver for persons with cancer and persons with Alzheimer's disease, few studies have examined factors that lead to role strain for caregivers of persons with both oncological and neurological symptoms. In this study qualitative methods were used to analyse data from self-report questionnaires from 43 caregivers of adults with a primary malignant brain tumour (PMBT) in the USA. Six themes emerged from the analysis: the work of caring, informal support, formal support, information, dealing with symptoms, and end of life. The data suggest that health-care providers (HCPs) may decrease role strain by helping to identify competing demands, clarifying expectations of the role, providing information to caregivers on how to use formal and informal support systems to delegate care tasks, and by teaching caregivers how and when to ask for help. HCPs may also assist caregivers by providing information on managing cognitive and neuropsychiatric problems at home, what to expect at the end of life, and by following up to determine the caregiver's ability to integrate information into providing care.