Life Of Primary Caregivers Research Articles

Quality of life of primary caregivers of patients in a vegetative state receiving home enteral nutrition

Quality of life of primary caregivers of patients in a vegetative state receiving home enteral nutrition

Religiosity and its relation to quality of life in primary caregivers of patients with multiple sclerosis: a case study in Greece

The first objective of the current observational study was to assess the degree of religiosity in Greek Christian Orthodox primary caregivers of patients with multiple sclerosis (MS). The second objective was to evaluate the interrelations between religiosity and quality of life (QOL) and to identify the determinants of QOL, an endpoint of considerable importance in clinical research and practice. Twenty-two male and 13 female primary caregivers (mean age 47.3 ± 12.4 years) of an equal number of patients with MS, who consented to participate, completed the Systems of the Greek version of the Belief Inventory (SBI-15R) and the Greek validated version of EuroQOL (EQ-5D). The analysis revealed high scores on religiosity, especially among females. Caregivers scored in the religious beliefs and practices subscale of SBI-15R with a mean score of 22.8 ± 7.8 (range 0-30) and with 7.1 ± 4.8 (range 0-14) in the social support subscale. However, both of the SBI-15R domains were almost unrelated to the degree of overall QOL. There was only a reliable (but with little clinical value) association between the pain/discomfort domain of the EQ-5D with the SBI-15R beliefs and practices subscale (r = -0.38, p = 0.03). Although high levels of religiosity among Greek Christian Orthodox primary caregivers of MS patients were evident, this study did not demonstrate any beneficial effect of religious beliefs and practices on their QOL. Further prospective studies with a population with the same and/or diverse religious and cultural backgrounds are needed to better elucidate the complex association between religiosity and QOL in primary caregivers of MS patients.

Development and validation of a questionnaire measuring quality of life in primary caregivers of children with atopic dermatitis (QPCAD)

Disease-specific health-related quality of life (HRQoL) instruments for primary caregivers of children with atopic dermatitis are useful in evaluating the efficacy of treatment in clinical practice and study. However, no such scale has been available in Japan. To develop and validate a self-administered instrument specifically designed to measure quality of life in primary caregivers of children with atopic dermatitis (QPCAD). This study consisted of three successive phases: the item generation phase, pilot test phase and validation phase. In the item generation phase, questionnaire items were derived from 33 qualitative interviews with primary caregivers. In the pilot test phase, the face and content validity of the preliminary scale were assessed (n = 33). In the validation phase, the questionnaire was finalized and assessed in terms of statistical performance (n = 416). The QPCAD included 19 items in the following categories: 'exhaustion', 'worry about atopic dermatitis', 'family cooperation' and 'achievement'. The reliability of internal consistency was fair (Cronbach's alpha coefficients 0.66-0.87). The QPCAD subscales and total score were significantly correlated with psychological health, physical health, anxiety, depression and severity score, with mild to moderate correlation coefficients. Test-retest reliability and responsiveness to change in severity were also satisfactory. The QPCAD is an appropriate tool for assessing HRQoL of primary caregivers of children with atopic dermatitis in clinical practice and clinical trials.

A Comparison of Studies on the Quality of Life of Primary Caregivers of Stroke Survivors: A Systematic Review of the Literature

Background and Purpose: Few studies have been conducted on the quality of life (QOL) of primary caregivers of stroke survivors (with and without aphasia), with little consistency in the methods of evaluation. The purpose of this systematic review of the literature was to determine the appropriateness of study designs and instruments used to assess QOL in caregivers of stroke survivors. Method: A comprehensive literature review was conducted to identify peer-reviewed articles of caregiver’s QOL where CINAHL, MEDLINE, and PsycINFO databases were searched. Results: Nine studies that met the inclusion criteria used different QOL instruments and study designs. None of the instruments were specific to caregivers of stroke survivors. Conclusion: Future studies are warranted to assess the quality of life of caregivers of stroke survivors with and without aphasia.

Global quality of life in primary caregivers of patients with cancer in palliative phase staying at home

Research on global quality of life (GQOL) in primary caregivers (PCGs) of cancer patients is limited. This study measured significant domains of GQOL in PCGs and their association with the patients' disease trajectory and the PCGs' background and life situation. This study also explored differences in their GQOL compared to a normative sample from the general population (NORM). In a cross-sectional design, 71 PCGs (aged > or = 50 years) of cancer patients in palliative phase rated their GQOL by the Quality of Life Scale (QOLS) and provided information concerning demography, experienced social support, and caring situation. Associations between the QOLS scores and variables of the patients' medical history were assessed, and comparisons of QOLS scores were made between the PCGs and age- and gender-adjusted NORM. Long duration of the curative phase for patients and holding a job for PCGs were significantly associated with a favorable GQOL in PCGs. The mean total GQOL score did not differ significantly between the PCGs and NORM groups, though subanalyses revealed significantly more favorable mean score of the relational domain in PCGs compared to NORM. GQOL in PCGs of cancer patients in palliative phase staying at home was as good as that of the NORM. For PCGs not employed or caring for patients with a short curative phase, getting some recreation could be of importance for improvement of GQOL.

Psychological Distress, Fatigue, Burden of Care, and Quality of Life in Primary Caregivers of Patients With Breast Cancer Undergoing Autologous Bone Marrow Transplantation

To determine the effects of sociodemographic variables, psychological distress, fatigue, and quality of life (QOL) on burden of care in primary caregivers of patients with breast cancer undergoing autologous bone marrow transplantation (BMT). Descriptive, correlational, predictive. Urban National Cancer Institute-designated comprehensive cancer center in the eastern United States. Convenience sample of 102 primary caregivers. Participants completed the sociodemographic data form, Piper Fatigue Scale, Beck Depression Inventory, State-Trait Anxiety Inventory, QOL Index, and Measurement of Objective and Subjective Burden Scales prior to BMT during an oncology clinic visit. Depression, anxiety, fatigue, QOL, and burden of care. Mean fatigue scores were low. Primary caregivers experienced moderate state anxiety and low trait anxiety. Some experienced severe depression. The objective burden of care mean score was slightly higher than the subjective mean score. Mean QOL scores were low. All variables were significantly intercorrelated, except subjective burden and temporal and sensory fatigue. Significant correlations were found between age and subjective burden, and income with fatigue temporal subscale, and state and trait anxiety. Family subscale of QOL was a significant predictor of objective burden. Age and trait anxiety were significant predictors of subjective burden. Primary caregivers of patients with breast cancer scheduled for BMT experience fatigue, anxiety, burden of care, and low QOL. These caregivers may have tried to meet their needs and the patients' needs simultaneously. Healthcare providers need to proactively assess primary caregivers of patients for fatigue, psychological distress, burden of care, and decreased QOL and provide nursing interventions tailored to individual needs.

Caregiver quality of life after autologous bone marrow transplantation.

Bone marrow transplantation (BMT) is a unique cancer therapy characterized by its novelty, intensity, and toxicity. Although families have been identified as having a critical influence on patient adaptation during the acute phase of BMT, minimal attention has been paid to their experiences during extended survivorship. This article reviews findings from a descriptive study on quality of life in primary caregivers of adult autologous bone marrow transplantation (AuBMT) survivors after acute hospitalization. Caregiver perceptions of their survival are delineated in an effort to characterize the dynamics of family recovery after BMT. Specifically, caregivers of AuBMT survivors require ongoing assistance to maintain their primary support role after BMT.