The burden on primary caregivers of patients with palliative needs: A multidimensional entity The burden on the primary caregivers (original) (raw)
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Palliative Medicine Reports
Background: The family caregiver (FCG) is with the patient from diagnosis till the end of life. The accumulated burden has a negative impact on the caregiver's quality of life and on his physical and emotional well-being. Objective: To quantify the burden of care for a patient with palliative needs, and to compare the burden experienced by caregivers for nononcological patients with those for cancer patients. Design: Prospective longitudinal study. Setting/Participants: One hundred forty patient-primary caregiver pairs participated in the study, which were separated into two groups: those who cared for patients with nononcological diseases (n = 63) and those who cared for patients with cancer (n = 77). Measurements: The burden measurement was assessed with Burden Scale for FCGs. Results: The average score of the FCG's burden was significantly higher in the nononcological group (45-14.45 vs. 36.52-15.05; p = 0.001). In the case of caregivers for cancer patients it is noticed that the caregivers' burden decreases after the intervention of the specialized team (45.58-14.11 at T1 vs. 36.65-16.10 at T2; p = 0.001). The burden values for caring for patients with nononcological diseases remained in the plateau, indicating incremental caregiver adaptation, although the rising trend is still present toward the end of the term (47.43-13.32 vs. 56.69-15.44; p < 0.001). Conclusions: The burden dynamics are different depending on the patient's disease, duration of care, degree of dependence, number of comorbidities, and on the intervention of the palliative care team that ensures the support of the caregiver for the palliative patient.
Caregiver overload and factors associated with care provided to patients under palliative care
Investigación y Educación en Enfermería, 2021
Objective. To identify overload and associated factors among caregivers of adult patients receiving palliative care. Methods. Descriptive, quantitative, and cross-sectional study addressing 40 adults under palliative care and their respective caregivers enrolled in the Home Care System in Ribeirão Preto, Brazil. Data concerning the patients included demographic profile and Mini-Mental State Examination. A form was used to collect the caregivers’ demographic data along with the Zarit Burden Interview Scale, Self-Reporting Questionnaire, Beck Depression Inventory, and Coping Strategies Inventory. Results. Regarding the patients, 84.2% were women, 52.6% were over 80, 65.8% had no partner, and 76.3% presented cognitive impairment. The caregivers were mostly women (84.5%), aged 56.67 years old on average, were the patients’ children (42.5%); had no partner (55%), and lived with the patient (77.5%). The mean score obtained in the burden scale was 28.78 points, 32.5% had stress, and 42.5% ...
Nuzhat Aamina, Chanda Zulfiqar, Tahira Shaheen
Background: Due to the recent advancements in diagnostic and molecular technology more and more patients are being screened and being managed for different types and stages of cancer. Although the life expectancy has been increased to some extent but the quality of life has further crippled. All these therapeutic approaches has mounted the burden on the family caregivers’ within the field of palliative medicine. In this study, we have aimed to evaluate the prevalence and types of care givers burden on palliative care of advance disease patients. Materials and Methods: A cross-sectional study was conducted from January 2019 to March 2019 at Lahore General Hospital Lahore. The study included all the caregivers involved in the palliative care of the advance diseased patients. A self-structured questionnaire was designed consisting of demographic details, the Urdu translated version of Zarit Burden Interview to quantify the caregivers’ burden, and the Caregiver Distress Scale to identify and evaluate the different types of burden among caregivers Results: The study included 200 caregivers of terminally ill cancer patients. Their ages ranged between 20 and 60 years, with an arithmetic mean of 35.5 years and a standard deviation of 4.5 years. The caregiver burden was reported among the majority of the participants (97.0%) and 21% were found to be severely burdened. Conclusion: Caregiving of a terminally sick patients is associated with a considerable psychological burden and warrants an empathetic and kind gesture from the health care professionals. Keywords: caregiver, palliative care, terminally ill, psychological stress
Psycho-Oncology, 2015
Objective: Recently, caregiver burden (CB) has emerged as an important issue in the area of palliative medicine. However, patients' feelings related to being a burden to their families (i.e., self-perceived burden [SPB]) is also a significant issue. We evaluated the relation of CB and SPB as preference for palliative care. Methods: A national, multicenter, cross-sectional survey of 326 patient-caregiver dyads was performed. A set of paired questionnaires evaluating CB and SPB (five domain items assessed on a four-point Likert scale) were independently administered to patients and their caregivers. Among the respondents, only the patients with distant stage cancer and their caregivers were included. Multivariate analyses were conducted to identify the associations between CB and SPB and preference for palliative care. Results: Caregivers and patients who preferred palliative care to life sustaining treatment reported higher CB and SPB scores, respectively. Caregivers who felt more of a burden were more likely to prefer palliative care over life sustaining treatment for their patients (adjusted odds ratio [aOR] = 1.67, 95% CI: 1.21-2.31). In addition, patients who perceived their caregivers' burden as large tended to prefer palliative care (aOR = 1.61, 95% CI: 1.16-2.22). Conclusions: Both CB and SPB increased preference for palliative care. This could be interpreted that high CB can lead to preference for palliative care in both patients and their caregivers, potentially threatening patient autonomy. Efforts to relieve CB and SPB are needed.
Integrative Cancer Science and Therapeutics
The study aims were to assess the level of burden among caregivers of patients diagnosed with cancer and to examine patient and caregiver variables associated with high levels of burden. A descriptive cross sectional study was performed at the Psychiatric Department in the University Hospital of Monastir, Tunisia. The study included a total of 138 dyads of patients and their corresponding family caregivers. The dyads were convoked then examined. The data were assembled using questionnaires elaborated by the research team and caregiver burden was measured with the Zarit Burden Interview. Patients completed the Hospital Anxiety and Depression Scale and the KATZ Index of Activities of Daily Living. About one third of the caregivers experienced high levels of burden. The scores at the Zarit Burden Interview ranged from 15 to 70 and mean score was 48.7 (SD =18.2). This negative outcome of caregiving was found to be related to both patients' and caregivers' variables. Statistically, the factors associated to high levels of burden among family caregivers that are linked to the patient's profile were: male gender, age between 61 and 70 years old, having other medical morbidities, necessitating pre and post-operative chemotherapy, having intermediate to high levels of anxious or depressive symptoms and a severe functional impairment. Caregivers who helped their patients to accomplish many daily activities were found to be high-burdened. The caregiver variables that were found to be related to high levels of burden among caregivers were: male gender, age between 40 and 59 years old, employed full-time status, being the child of the patient, having another member of the family needing daily care, caregiving period more than one year, and not resorting to a professional healthcare at home. The current study demonstrates the importance of a systematic assessment and early intervention procedures needed in order to detect vulnerable caregivers.
Palliative and Supportive Care, 2010
Objective:Caregivers of patients with advanced cancer experience physical and emotional strain that can raise their own risk for morbidity and mortality. This analysis was performed to determine whether ENABLE II, a patient-focused palliative care intervention that increased patients' quality of life, reduced symptom intensity, and lowered depressed mood compared to usual care, would affect caregiver burden.Method:Caregivers of patients with advanced cancer from the parent study completed a caregiver burden scale and patients completed quality of life, symptom intensity, and depressed mood measures. Data were collected at baseline, 1 month, and every 3 months thereafter until patient death or the study ended. Decedents' caregivers were asked to complete an after-death interview regarding the quality of care that the patient received.Results:There were no significant differences in caregiver burden between intervention and usual care conditions. Follow-up analyses showed that...
Journal of Evolution of Medical and Dental Sciences, 2021
BACKGROUND We wanted to evaluate the effect of caregiver burden on quality of life of the cancer patient caregivers. METHODS This research was conducted as an analytical cross-sectional study. The study population comprised of caregivers of patients, who were receiving treatment in the chemotherapy unit of a branch hospital. 466 caregivers who participated in the study comprised the sample of the research. The research data was collected using “Demographic Data Form”, “Zarit Burden Interview”, and “Caregiver Quality of Life Scale-Cancer”. RESULTS Among the participants, 71.2 % were females and average age was 44.80 ± 13.76. It was concluded that certain qualifications of the caregivers such as educational status, income levels, another family member with cancer diagnosis, and having support in caregiving process affected the quality of life of the caregivers. Burden scale score was 32.41, and quality of life scale score was 89.83. It was determined that there was a negative and stro...
Determining the Care Burden of Caregivers Taking Care of Patients with Cancer
2016
This descriptive study was conducted in an attempt to determine the caregiving burden of caregivers taking care of patients with cancer. The study was performed with 80 patient relatives taking care of patients with cancer at Ali Osman Sönmez Oncology Hospital. Regarding the study participants, 87.5% stated that they volunteered in caregiving, 73.75% had an interrupted sleep, 80% were affected in terms of family life, 56.25% business life and 80% emotional life. Comparing the care giving burden of women, as well as those who were older than 51 and were married according to their gender, age and marital status, we determined significant differences. There was a significant difference in caregiving burden in those living with their patients for 5 years and those taking care of their partners according to the variables of caregiving. The study results show that the caregiving burden is mainly put on partners. In order to decrease the personal burden, it is required to share the care in...
Factors Affecting the Family Burden of the Palliative Family
Indonesian Journal of Global Health Research, 2021
The process of palliative patient care indirectly causes a burden on the family. This study aims to determine the description of the family burden in caring for palliative patients. This study is a qualitative research with a phenomenological study design. Participant criteria are families who care for patients for at least 6 months. The number of respondents in this study were 4 respondents as care givers of palliative patients. The research method using the analysis method used includes categorizing themes, compiling sub-categorization of themes and the last is the coding process. The results of the study showed that there was a description of the family burden of palliative patients and a description of the factors that influenced palliative patients including economic status, patient complaints, family support, family perception, availability of treatment support tools, and the ability of families to manage family burdens. The burden on the family can be reduced by training the ...