Family Caregiver Satisfaction Research Articles

A psychometric validation study of the Quality of Life and FAMCARE scales in Turkish cancer family caregivers

The aim of this study was to assess the psychometric validation of the Quality of Life and FAMCARE scales in Turkish family caregivers of cancer patients. This is a descriptive study involving 100 family caregivers of cancer patients. The validity and reliability study of the scales was performed in two phases. Phase I focused on the construction of the Turkish version of the instruments and pilot testing. Phase II was the psychometric assessment of the scales. The caregivers stated that the two questionnaires were easy to read and to understand. However, the psychometric validation performed afterwards revealed that both the ordering of the factor loadings and content of the scales were influenced by prevailing characteristics of Turkish society. Caregivers were satisfied with the care their patients received, and family concerns were the most negatively affected quality-of-life (QOL) dimensions. Factors affecting the QOL and satisfaction with care were age, co-residence, relationship to patient, gender of the patients and caregivers, stage of the disease of the patient and marital status of the caregivers. Psychometric validation of the Quality of Life and FAMCARE scales demonstrates that these culturally adapted scales are valid and reliable tools to assess the QOL and satisfaction of Turkish family caregivers of cancer patients.

Sudden Advanced Illness: An Emerging Concept Among Palliative Care and Surgical Critical Care Physicians (709)

1.Discuss the emerging concept of sudden advanced illness (SAI).2.Explore the understanding of, experience with, and comfort levels with SAI among palliative and surgical critical care physicians.3.Discuss the implications of SAI on bereavement, family and provider satisfaction, and communication in the surgical ICU. Background. Among hospitalized critically ill patients, those with SAI present with acute conditions, characterized, in general, by less predictable trajectories and uncertain prognoses. There is often an absence of preexisting or ongoing relationships between patients and physicians, and end-of-life discussions are often rushed and occur earlier on admission. Research objectives. This study explores the emerging concept of SAI and its relevance to a subset of patients requiring the services of both Palliative and Surgical Critical Care specialists. We sought input from physicians in both these specialties, exploring their understanding of, experience with, and comfort level in caring for patients with SAI. Methods. We conducted face-to-face interviews with 16 attending physicians at our institution, a Level-1 Trauma Center. Using a semi-structured, open-ended interview guide, each physician was queried about (1) the definitional components of SAI, (2) an illustrative case, and (3) comfort level with such cases. Interviews were analyzed through a qualitative line-by-line methodology. Results. Our results revealed that respondents characterize SAI as an unforeseen, event-related condition that emerges abruptly and produces devastating injury, often in previously healthy and relatively younger patients. The typical SAI case is characterized by (1) physician's uncertainty in prognostication, (2) patient's sudden loss of decision-making capacity, and (3) family members’ lack of preparation for surrogate decision making. Despite overall comfort with family meetings, our respondents describe SAI cases as emotionally charged and often intensely personal, reflecting the age and life-stage of many of the physicians themselves. Conclusion. The emerging concept of SAI is an important one for understanding how the palliative care consultation process can enhance the care plan for this subset of patients and families. Further study of the potential benefits of palliative care consultation in these patients as it relates to complicated bereavement, family and formal caregiver satisfaction, and communication between families and staff will be crucial. Implications for research, policy, or practice. See above conclusions.

Factors Related to Family Caregivers’ Satisfaction With Home Care for Mental Illness in Taiwan

In Taiwan, family caregivers play a significant role in the treatment of mentally ill patients at home because of cultural obligations. This descriptive, cross-sectional study explored factors affecting family caregivers’ satisfaction with home care services for the mentally ill and assessed the possibility of continuous use of home care and recommendation of home care to others based on the level of satisfaction of family caregivers. Data were collected using a questionnaire completed by a convenience sample of 75 primary family caregivers of mentally ill patients. Family caregiver satisfaction was significantly associated with caregiver age, marital status, support from family members to assist the caregiver during weekdays and weekends, the amount of time spent in caregiving per week, and feelings about having a mentally ill family member at home. Caregivers who had a higher level of satisfaction with home care were twice as likely as those with lower satisfaction to use the services again when needed. Home care nurses should pay close attention to the variables that support use of home care.

노인장기요양보험 시설서비스에 대한 가족수발자 만족도 영향 요인

This study examined the factors related to family caregiver satisfaction with institutional care services for beneficiaries under the Public Long-Term Care Insurance(PLTCI) system. Determining what contributes to family caregiver satisfaction is a critical step toward implementing effective quality improvement strategies. A national cross-sectional descriptive survey was conducted from November to December 2008, using proportionate quota sampling based on the location and level of Long-Term Care of the beneficiaries. Total 1,745 family caregivers wrote informed consents and 733 (response rate 42%) completed questionnaires, which included caregiver characteristics, organizational resources, primary objective and subjective stressors, perceived quality of services, and family caregiver satisfaction. Family caregivers were satisfied overall with institutional care. In multiple regression analysis, there was a statistically significant difference in degree of family caregiver satisfaction according to caregiver characteristics(relationship to beneficiary), primary objective stressors (insurance type of beneficiary), perceived quality of services(respect to family caregivers` idea, ADL support, expertness of staff, careful concern of staff, fulfillment of client`s requests, and safety of institution`s environment). In public long-term care, satisfaction efforts are in an early stage of development. This study is meaningful as the first attempt to measure family caregiver satisfaction with institutional care for beneficiaries under the PLTCI system, and to identify factors affecting the satisfaction. Among the identified factors, the policy makers, the insurer, and the providers need to pay attention to perceived quality of services, in particular, to improve customer satisfaction. Our findings can provide quality care improvement initiatives in the public long-term care setting.

Family caregiver satisfaction with early palliative care for advanced non-small cell lung cancer (NSCLC)

9027 Background: Historically, there has been no established role for palliative care in treating ambulatory oncology patients who are not at the end of life, but still struggling with the physical, psychosocial and spiritual aspects of cancer. Integrating palliative care services earlier in oncology care may help alleviate the suffering of patients with advanced cancer and family caregivers. This single-arm pilot study examines caregiver satisfaction with early palliative care services in patients with advanced NSCLC. Methods: Sample included patients within 8 weeks of diagnosis of stage IIIb with effusions or IV NSCLC and their family caregivers. Patients met with the palliative care team at least monthly until the time of hospice referral or death, completing assessments of quality of life (FACT-L) and mood (HADS) at baseline, 3, and 6 months. Caregivers rated their satisfaction with palliative care services using the FAMCARE. To identify predictors of caregiver satisfaction with care, patient scores from the FACT-L and HADS were entered into a linear regression model. Results: Fifty-one patients were enrolled (31 female, mean age=64.5 years), with 73% (n=37) identifying a caregiver who consented to participate. Of the 32 caregivers who completed a follow-up assessment, 84% (n=27) reported average FAMCARE scores in the “very satisfied” to “satisfied” range. Patients with worse physical (β=−.49, p=.003) but better social wellbeing (β=.55, p=.001) on the FACT-L at baseline had caregivers who were more satisfied with palliative care services at follow-up. Patient mood symptoms on the HADS were not related to caregiver satisfaction with care. Conclusions: The majority of family caregivers reported being satisfied with oncology care that included early palliative care. Patients with greater physical disability had caregivers who were more satisfied with care, which may be due to increased contact with the palliative care team. Also, patients who felt more supported by their families at baseline had caregivers who were more satisfied with care. While these data are encouraging, controlled longitudinal studies are needed to determine if these findings are actually the result of early palliative care services. [Table: see text]

Factors Affecting the Level of Depression and Life Satisfaction of Family Caregivers of Frail Older People in Korea

South Korea is rapidly becoming an aged society and with changing family structures there is increasing concern about the care of older people. This paper considers the well being of family carers of older people who suffer from dementia or a stroke. One hundred and sixty eight family caregivers, who were caring for elderly relatives, were selected and the major factors affecting their psychological well-being and proposals to improve their quality of life are identified and discussed.

Family Caregiver Involvement and Satisfaction With Institutional Care During the 1st Year After Admission

The purpose of this research is to examine the relationship between caregivers’ involvement and their satisfaction with institutional care during the 1st year. This panel study includes 145 care-givers. A summary indicator of satisfaction was analyzed (a) near admission and (b) for change 1 year after admission. Caregivers were least satisfied with physicians and the number of staff at both time points. Satisfaction at admission and change in satisfaction from admission to 1 year later were regressed on caregivers’ involvement after controlling for caregivers’ depression, family tension, and perceived behavioral problems of their relatives. Multivariate results indicated that more involved caregivers at admission were less satisfied with institutional care at admission and became less satisfied during the year after admission. More involved caregivers may be less satisfied because they see firsthand problems with nursing home care and because a meaningful caregiving role after institutionalization is not facilitated by nursing homes.

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.

Preventive home care of frail older people: a review of recent case management studies

Preventive actions targeting community-dwelling frail older people will be increasingly important with the growing number of very old and thereby also frail older people. This study aimed to explore and summarize the empirical literature on recent studies of case/care management interventions for community-dwelling frail older people and especially with regard to the content of the interventions and the nurse's role and outcome of it. Very few of the interventions took either a preventive or a rehabilitative approach using psycho-educative interventions focusing, for instance, on self-care activities, risk prevention, health complaints management or how to preserve or strengthen social activities, community involvement and functional ability. Moreover, it was striking that very few included a family-oriented approach also including support and education for informal caregivers. Thus it seems that the content of case/care management needs to be expanded and more influenced by a salutogenic health care perspective. Targeting frail older people seemed to benefit from a standardized two-stage strategy for inclusion and for planning the interventions. A comprehensive geriatric assessment seemed useful as a base. Nurses, preferably trained in gerontological practice, have a key role in case/care management for frail older people. This approach calls for developing the content of case/care management so that it involves a more salutogenic, rehabilitative and family-oriented approach. To this end it may be useful for nurses to strengthen their psychosocial skills or develop close collaboration with social workers. The outcome measures examined in this study represented one of three perspectives: the consumer's perspective, the perspective of health care consumption or the recipient's health and functional ability. Perhaps effects would be expected in all three areas and thus these should be included in evaluative studies in addition to measures for family and/or informal caregiver's strain and satisfaction.

Improving referral of patients to hospice through community physician outreach

Many patients are not referred to a hospice until the very end of the terminal phase of their disease process. Unfortunately, referrals that come late in the course of the illness may hinder optimal symptom management and also may preclude the hospice from meeting the psychosocial and spiritual needs of patients and their families. Indeed, late referrals have been associated with lower satisfaction with hospice care.1 Hospice of St. Mary’s County, a department of St. Mary’s Hospital in Leonardtown, Maryland is the sole provider of hospice care for a rural county with a population of approximately 93,000. In 2003 our agency implemented the National Hospice and Palliative Care Organization’s Family Evaluation of Hospice Care (FEHC) survey, an after-death survey designed for use in evaluation of quality of care. Families were mailed the survey 1 to 3 months following the death of their loved one. One question on the survey asked families whether they believed their loved one had been referred to hospice too early, at the right time, or too late. Sixteen families were surveyed at our facility. In

Family caregiver satisfaction with the nursing home after placement of a relative with dementia.

This article examines family caregiver satisfaction after nursing home placement of a relative with Alzheimer disease or a related dementia. Determining what contributes to family caregiver satisfaction is a critical step toward implementing effective quality improvement strategies. A stress process model is used to study caregiver satisfaction among 285 family caregivers in relation to primary objective stressors (stage of dementia, length of stay, length of time in caregiving role, visitation frequency, involvement in nursing home, and involvement in hands-on care), subjective stressors (expectations for care), caregiver characteristics (education, marital status, familial relationship, workforce participation, distance from nursing home, and age), and organizational resources (rural/urban location, profit/nonprofit ownership, special care unit [SCU] designation, and custodial unit designation). SAS PROC MIXED is used in a multilevel analysis. Higher satisfaction is associated with earlier stage of dementia, greater length of time involved in caregiving prior to institutionalization, higher visitation frequency, less involvement in hands-on care, greater expectations for care, and less workforce participation. Multilevel analysis showed that primary stressors are the strongest predictors of satisfaction. Only one caregiver characteristic (work participation) and one organizational resource (rural/urban location) predict satisfaction. SCU designation was unrelated to satisfaction, perhaps because SCUs have less to offer residents in more advanced as opposed to earlier stages of Alzheimer disease. If family satisfaction is to be achieved, family presence in a nursing home needs to give caregivers a sense of positive involvement and influence over the care of their relative.

Family Caregiver's Satisfaction with Home Care in the Taipei Metropolitan Area

This research was designed to evaluate the quality of home care by examining family caregiver's satisfaction with home care services received. The sample for this study were 110 families using home care from the Taipei Metropolitan Area. Data were collected from interviews of the family members. The degree of satisfaction with each attribute of services was measured using a Likert scale with 5 responses. The degree of general satisfaction with home care was averaged across 19 attributes. More than 91.0% of the family caregivers believed that the respect, consideration, concern for questions, and acceptance for suggestions from home care workers did not need any improvement. In contrast, at least two-thirds of the family caregivers felt the speedy provision of services in an emergency and the degree of ease of contacting home care workers by telephone needed improvement. The number of desired attributes that were received was a significant determinant of general satisfaction with home care services received. Family caregivers who received at least 14 attributes tended to be more satisfied with home care services than the respondents who received fewer than 14 attributes of home care services. Overall, subjects receiving home care services were satisfied. The more desired attributes of home care received, the higher the satisfaction with home care.

Family caregiver satisfaction with medical care of their demented relatives.

Eighty-eight family caregivers were interviewed concerning their experience with medical care of their demented relatives. Although the majority of caregivers expressed overall satisfaction, they showed higher levels of dissatisfaction than are commonly found in studies of satisfaction with medical care. Greatest dissatisfaction was expressed in regard to receiving insufficient information about dementia; fewest concerns were expressed about inappropriate physician control. Families reported frequently receiving vague diagnoses and insufficient referrals for supportive services.