Caregivers' satisfaction with cervical cancer care in Ethiopia.

BACKGROUND AND PURPOSE: Cervical cancer is the second most common cancer among African women, following breast cancer. Palliative care is among the standards of care in cancer management. While caregivers play key roles in palliative care, their satisfaction with the care influences treatment outcomes and patients' quality of life. This study evaluated caregivers' satisfaction with the care provided to patients with advanced cervical cancer. METHOD: A cross-sectional evaluation of caregivers' satisfaction with patient care was conducted at a tertiary hospital in Ethiopia. The study tool included the 20-item family satisfaction with advanced cancer care (FAMCARE) and caregiver stress index (CSI). Using binary logistic regression, we identified factors associated with caregivers' satisfaction. RESULT: A total of 360 caregivers were interviewed. Most of the caregivers were male (58.1%), below the age of 35 years (60.8%), and educated to the high school level or less (64.4%). The average FAMCARE score was 77.7 out of the maximum 100. High satisfaction was observed among subscales "availability of treatment and care" and "psychosocial care," while low satisfaction was observed with "physical patient care" and "provision of information." Caregivers' stress and time dedicated to the caregiving were associated with caregivers' satisfaction. CONCLUSION: Overall, high satisfaction with advanced care at the tertiary hospital was documented. However, the caregivers also bore high burden of strain. Management of caregivers' strain, prompt treatment of patients' symptoms, and provision of adequate information to the caregivers could further improve caregivers' satisfaction.

Measuring next of kin satisfaction with hospital cancer care: Using a mixed-method approach as basis for improving quality and safety.

AIM/S: To explore next of kin satisfaction with cancer care, map next of kin suggestions for involvement and combine this information to create a basis for improving quality and safety in hospitals. DESIGN: Convergent parallel mixed-methods design applying the 20-item FAMCARE Scale survey instrument for quantitative measurement of satisfaction with care and with an open-ended question used for qualitative analysis. DATA SOURCES: Responses from 238 next of kin (November 2016-November 2017). METHODS: Exploratory factor analysis, regression analysis and qualitative content analysis were combined. RESULTS: Both hospitals scored better in medical treatment (median, interquartile range: 1.5, 1.1-2.0), than in satisfaction with information and involvement of next of kin (1.9, 1.3-2.4), p < .001 (Wilcoxon signed ranks test). After adjusting for differences in demographical and clinical variables, the total FAMCARE scores were 13% higher (95% confidence interval: 1%-27%, Wald p = .029) at one of the hospitals. Qualitative findings support that the hospitals are not providing an equal offer to next of kin involvement in hospital cancer care that includes a proactive approach. CONCLUSION: As a basis for quality and safety improvement, next of kin satisfaction and involvement in cancer care should be addressed in a two-sided perspective, balancing the next of kin's need for involvement in cancer treatment with the patient's perspective. IMPACT: There is limited knowledge of next of kin satisfaction with hospital cancer care and how next of kin would like to be involved in this trajectory. Several aspects of satisfaction with cancer care can prompt change to improve service quality and safety (e.g. information, involvement, practical care), but this is an underused source of information. Next of kin are key in cancer care and our study demonstrates a potential large impact on future practical ways of improving cancer care service provision in an integrative perspective including next of kin.

Psychometric Properties of a Spanish-Language Version of a Short-Form FAMCARE: Applications to Caregivers of Patients With Alzheimer's Disease and Related Dementias.

Although family satisfaction is recognized as a critical indicator of quality care for persons with serious illness, Spanish-language measures are limited. The study aims were to develop a Spanish translation of the short-form Family Satisfaction With End-of-Life Care (FAMCARE), investigate its psychometric properties in Hispanic caregivers to patients with Alzheimer's disease and related dementias (ADRD; N = 317; 209 interviewed in Spanish), and add parameters to an existing item bank. Based on factor analyses, the measure was found to be essentially unidimensional. Reliabilities from a graded item response theory model were high; the average estimate was 0.93 for the total and Spanish-language subsample. Discrimination parameters were high, and the model fit adequate. This is the first study to examine the performance of the short-form FAMCARE measure among Hispanics and caregivers to patients with ADRD. The short-form measure can be recommended for Hispanics and caregivers to patients with ADRD.

Perceptions of the care received from Australian palliative care services: A caregiver perspective.

ABSTRACTBackground:Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families. OBJECTIVE: Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services. METHOD: Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE-2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire. RESULTS: Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81). SIGNIFICANCE OF RESULTS: While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the identification and evaluation of both patients' and caregivers' experiences, satisfaction, distress, and unmet needs.

[Development of a Japanese Version of the Short-Form FAMCARE Scale for family caregivers of terminal cancer patients at home in Japan].

AIM: To develop a Japanese version of the short-form FAMCARE Scale (Ornstein, 2015) for family caregivers of terminal cancer patients at home. METHODS: The survey was conducted with 316 family caregivers of terminal cancer patients at home selected as eligible participants in 11 major regions in Japan (the Tokyo metropolitan area, and the prefectures of Tochigi, Ibaraki, Saitama, Chiba, Kanagawa, Nara, Hyogo, Kagawa, Ehime, and Saga). Construct validity was confirmed using a confirmatory factor analysis, and the Caregiver Quality of Life Index-Cancer (CQOLC) scale was administered to assess criterion-related validity. RESULTS: A total of 120 family caregivers provided valid responses. The mean±standard deviation of the age of the family caregivers was 64.6±12.0 years, and 91 (75.8%) were female. A factor analysis of the results showed that the Japanese version of the 10-item and 5-item short-form FAMCARE Scale was a unidimensional construct, and a confirmatory factor analysis demonstrated a goodness of fit index of 0.910 and 0.972, an adjusted goodness of fit index of 0.835 and 0.916, a comparative fit index of 0.968 and 0.992, and a root mean square error of approximation of 0.095 and 0.081, respectively. The Cronbach's α coefficients of the 10- and 5-item scales were 0.95 and 0.93, respectively. The scale scores were significantly correlated with the family caregiver's quality of life (CQOLC) (10-item r=0.304, P<0.01; 5-item r=0.311, P<0.01). CONCLUSION: The Japanese version of the 10-item and 5-item short-form FAMCARE Scale was found to have sufficient reliability and validity for assessing family satisfaction with terminal cancer patient at home in Japan.

The Italian version of the FAMCARE scale: a validation study.

PURPOSE: Evaluation of the quality of care is a key element that healthcare providers now take into consideration to meet patients' needs, expectations, and values. The FAMCARE scale is one of the most important instruments available to assess the level of satisfaction about care received by patients and families. We describe the validation process used to develop an Italian version (IF) of the original FAMCARE scale for caregivers. METHODS: The IF was prepared according to standard guidelines for translation and transcultural adaptation of self-reported measures. The scale was self-administered to 132 informal caregivers of patients with cancer treated with curative and/or palliative care in a hospice, outpatient, or inpatient setting for at least 1 month. The participant group was composed of spouses (47.73 %), children (31.82 %), siblings (3.03 %), or other relatives (17.42 %). All participants simultaneously completed the EuroQol-5D (EQ-5D) questionnaire to test the construct validity. Twenty-two percent of randomly chosen participants re-completed the test after 1 month to evaluate IF test-retest stability. RESULTS: The IF showed a strong reliability with internal consistency [α = 0.93, confidence intervals (CI) = 0.91-0.95] and test-retest stability (Pearson r = 0.38; Kendall's tau-b = 0,25; Spearman's rho =0.34). Factor analysis identified four factors capable of explaining the 63 % total variance which did not change after the Varimax normalized rotation. Notwithstanding the lack of correlation with the VAS component of the EQ-5D questionnaire, our results highlighted robust psychometric properties of the IF. CONCLUSIONS: IF is a valid translation of the FAMCARE scale and can be used to assess caregiver satisfaction within the Italian context of cancer palliative care.

Reliability and Validity Testing of the FAMCARE-2 Scale: Thai Translation.

OBJECTIVE: Measuring the satisfaction of family caregivers regarding the palliative care provided to their family members is very important for quality improvement in the palliative care system. The aim of this study was to test the psychometric properties (i.e., reliability and validity) of the FAMCARE-2 Scale: Thai Translation for measuring family caregiver satisfaction. METHODS: A forward-backward translation process was utilized to produce the 17-item FAMCARE-2 Scale: Thai Translation. The questionnaire and the demographic data form were hand-delivered to the primary family caregivers of 66 palliative care patients of the inpatient wards at Maharaj Nakorn Chiang Mai Hospital, Faculty of Medicine, Chiang Mai University, on the patient discharge date. Internal consistency reliability testing of the FAMCARE-2 Scale: Thai Translation was assessed by calculating the Cronbach's alpha coefficient. Factor analysis was used to test construct validity. RESULTS: The FAMCARE-2 Scale: Thai Translation showed a high level of internal consistency (Cronbach's alpha coefficient of 0.94) and an item-to-total correlation coefficient of 0.13-0.77. Factor analysis of FAMCARE-2 revealed a four-factor structure: management of physical symptoms and comfort, patient care and sharing information, symptoms and side effects, and family and patient support. CONCLUSIONS: The FAMCARE-2 Scale: Thai Translation was found to be a valid psychometric tool for measuring family caregiver satisfaction within the Thai context of palliative care.

Translation and Validation of the 10-Item FAMCARE Scale to Assess Satisfaction of Family Caregivers With Care Given to Cancer Patients.

CONTEXT: Family satisfaction with care is an important quality indicator in palliative care. OBJECTIVES: This study aimed to translate and validate the 10-item Family Satisfaction with End-of-Life Care (FAMCARE) tool. METHODS: Family caregivers of patients with advanced cancer were recruited. FAMCARE was translated from English to Chinese using a forward and backward translation process. Chinese-speaking caregivers were interviewed with the preliminary Chinese FAMCARE, and phrasing was edited to ensure clarity of the items. Subsequently, a baseline and follow-up survey in English and the finalized Chinese version were performed to assess psychometric properties. Cronbach's alpha (α) and intraclass correlation coefficient were used for internal consistency and test-retest reliability, respectively. Validity was assessed with Spearman's correlation coefficient (r). The Comprehensive Needs Assessment Tool-Caregiver (CNAT-C) and a one-item assessment by caregivers regarding "good-care" acted as a validity criterion. Pooled analysis of both languages and language-specific analyses were performed. RESULTS: There were 259 participants; 134 and 125 participants filled in the English and Chinese versions, respectively. Pooled analysis showed that the intraclass correlation coefficient of FAMCARE was 0.95; α was 0.91. There was a moderate positive correlation between the total FAMCARE scores and "good-care" (r = 0.54) and a moderate negative correlation between the total FAMCARE score and the CNAT-C "Healthcare Staff" domain (r = 0.41). There was a weak negative correlation between the total FAMCARE score and the CNAT-C domain of "family and social support" (r = -0.13). Language-specific analyses revealed similar results regarding FAMCARE's psychometric properties. CONCLUSION: FAMCARE showed good reliability and validity.

Questionnaires measuring quality of life and satisfaction of patients and their relatives in a palliative care setting-German translation of FAMCARE-2 and the palliative care subscale of FACIT-Pal.

BACKGROUND: The evaluation of quality of life (QoL) and satisfaction with care in palliative care patients and their relatives is an important aspect of palliative care research, likewise important to get a direct feedback for the success of treatment. Here, questionnaires are important tools for measuring outcomes of care in medicine. Several validated, predominantly English, questionnaires already exist. These have been translated in different languages but German. The Functional Assessment of Chronic Illness Therapy (FACIT) is an established tool for the evaluation of QoL in cancer patients. The FACIT-Pal, a 46-itemquestionnaire of this group of questionnaires, measures the QoL in palliative care patients. It includes a new palliative care subscale which is not yet available in German. The FAMCARE-2, a 17-item-questionnaire, evaluates the relatives' satisfaction with the care and support they received from palliative care team. METHODS: The translation process followed a protocol including multiple independent translators as well as a forth and back translation. RESULTS: A German version of FAMCARE-2 and FACIT-Pal was translated based on the original questionnaire. Relevant differences between the English original versions and the back translations weren't revealed by the original scale developers. CONCLUSIONS: The final versions of the German translations have been authorized by the scale developers. The FAMCARE-2 and the FACIT-Pal are now available in German and can be used for research and quality control purposes.

Psychometric Properties of the Patients' Satisfaction Instrument FAMCARE-P13 in a Palliative Care Unit.

PURPOSE: To investigate the psychometric properties of the Greek 13-item measure of patients' satisfaction (FAMCARE-P13) in palliative care setting. METHODS: A hundred patients completed the FAMCARE-P13. Exploratory factor analysis and confirmatory factor analysis (CFA) have been conducted. Two factors' solution was revealed from CFA. The questionnaire was administered to an initial validation sample and then for test-retest in a sample of 40 patients 3 days later. The Rosenberg Self-Esteem Scale measuring global self-esteem has been also used as a gold standard for construct validity. Subscale and known groups validity have also been tested for FAMCARE-P13s' validity. RESULTS: A reduced 13-item version of our measure (FAMCARE-P13) possessed 2-factor structure with high reliability. Patient satisfaction was correlated with physical distress, communication and relationship with health-care providers, and caregiver satisfaction. CONCLUSIONS: We recommend the use of the Greek FAMCARE-P13 to assess care satisfaction of patients with advanced-stage cancer.

Use of an Item Bank to Develop Two Short-Form FAMCARE Scales to Measure Family Satisfaction With Care in the Setting of Serious Illness.

CONTEXT: Family satisfaction is an important and commonly used research measure. Yet current measures of family satisfaction are lengthy and may be unnecessarily burdensome--particularly in the setting of serious illness. OBJECTIVES: To use an item bank to develop short forms of the Family Satisfaction with End-of-Life Care (FAMCARE) scale, which measures family satisfaction with care. METHODS: To shorten the existing 20-item FAMCARE measure, item response theory parameters from an item bank were used to select the most informative items. The psychometric properties of the new short-form scales were examined. The item bank was based on data from family members from an ethnically diverse sample of 1983 patients with advanced cancer. RESULTS: Evidence for the new short-form scales supported essential unidimensionality. Reliability estimates from several methods were relatively high, ranging from 0.84 for the five-item scale to 0.94 for the 10-item scale across different age, gender, education, ethnic, and relationship groups. CONCLUSION: The FAMCARE-10 and FAMCARE-5 short-form scales evidenced high reliability across sociodemographic subgroups and are potentially less burdensome and time-consuming scales for monitoring family satisfaction among seriously ill patients.