The Relationship Between Symptom Severity and Caregiver Burden in Cancer Patients Under Palliative Care: A Cross-Sectional Study

2021 ◽  
pp. 082585972110457
Author(s):  
Emir Celik ◽  
Muhammed Samil Aslan ◽  
Nilay Sengul Samanci ◽  
Mehmet Karadag ◽  
Tarik Saglam ◽  
...  

Introduction Hospitalization is a stressful experience both for primary caregivers (PCs) and cancer patients alike. Although there is significant evidence that PCs of cancer patients can experience significant caregiver burden (CB), less is known about the relationships between PCs and patient symptom severity that influence CB. Methods: In this cross-sectional study, measures of the symptom severity were obtained from cancer patients. The PCs were assessed for CB. Associations between patients' symptoms and demographic characteristics and CB were investigated using multivariate analyses. Results: A total of 98 participants (patient-caregiver dyads) filled the questionnaires. According to the Zarit Burden Interview results, 65.3% of PCs had a high CB. Pain, tiredness, nausea, depression, drowsiness, well-being, and dyspnea had significantly higher mean values in those with high CB (p < .05). Financial difficulties, first-degree relationships with the patient, higher anxiety levels, and more pronounced tiredness appear to be the variables most predictive with high CB. Conclusion: In conclusion, the present study showed CB of PCs among a group of hospitalized incurable cancer patients. PCs of more symptomatic cancer patients had a higher CB, according to our findings. This emphasized the significance of palliative care. Appropriate guidance should be provided for the psychostress caused by the CB.

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Zati Sabrina Ahmad Zubaidi ◽  
Farnaza Ariffin ◽  
Cindy Teoh Cy Oun ◽  
Diana Katiman

Abstract Background Informal caregivers (IC) are often overshadowed by the attention required by the terminally ill. This study aims to reveal the estimated proportion of caregiver burden, psychological manifestations and factors associated with caregiver burden among IC in the largest specialized Palliative Care Unit (PCU) in Malaysia. Methods This was a cross-sectional study involving IC attending a PCU. Caregiver burden and psychological manifestations were measured using previously translated and validated Zarit Burden Interview and DASS-21 questionnaires respectively. Two hundred forty-nine samples were selected for analysis. Result The mean ZBI score was 23.33 ± 13.7. About half of the population 118(47.4%) was found to experienced caregiver burden whereby majority have mild to moderate burden 90(36.1%). The most common psychological manifestation among IC is anxiety 74(29.7%) followed by depression 51(20.4%) and stress 46(18.5%). Multiple logistic regression demonstrated that women who are IC to patients with non-malignancy were less likely to experience caregiver burden. IC who were highly educated and spent more than 14 h per day caregiving were at least twice likely to experience caregiver burden. Finally, those with symptoms of depression and anxiety were three times more likely to suffer from caregiver burden. Conclusion Caregiver burden among IC to palliative patients is prevalent in this population. IC who are men, educated, caregiving for patients with malignancy, long hours of caregiving and have symptoms of depression and anxiety are at risk of developing caregiver burden. Targeted screening should be implemented and IC well-being should be given more emphasis in local policies.


2020 ◽  
Vol 7 ◽  
pp. 205435811989801 ◽  
Author(s):  
Christopher I. Esezobor ◽  
Adaobi U. Solarin ◽  
Andrew T. Olagunju

Background: Childhood nephrotic syndrome (NS) follows a chronic course in most children. However, little is known about the psychosocial burden of NS on the caregivers despite evidence that caregiver burden or impairment in their well-being may alter the outcome of chronic childhood illnesses. Objectives: To determine the frequency and predictors of significant caregiver burden and psychological distress among caregivers of children with NS. Design: A cross-sectional study. Setting: Two pediatric nephrology clinics in Lagos, Nigeria. Patients: We included primary caregivers of children with idiopathic NS for at least 6 months. Measurements: The primary outcomes were psychological distress and significant caregiver burden among caregivers. Methods: We interviewed caregivers using the 12-item General Health Questionnaire (GHQ-12) and the 6-item Zarit Burden Interview (ZBI-6). The GHQ-12 scores ≥ 3 and ZBI-6 scores ≥ 6 indicated psychological distress and significant caregiver burden, respectively. Results: The caregivers were mostly mothers (77.9%) and married (92.4%), whereas the children (n = 172) were mainly male (65.1%). Most of the children (n = 152; 88.4%) had steroid-sensitive NS including 24 (14%) children with frequent relapses or steroid dependence and 20 (11.6%) with steroid-resistant NS. Of the 172 caregivers, 53 (30.8%) and 30 (17.4%) reported psychological distress and significant burden, respectively. Caregivers of children in relapse had adjusted an odds ratio (aOR) with 95% confidence interval (CI) of 2.45 (1.05-5.67) and 3.30 (1.22-8.92) of psychological distress and significant caregiver burden, respectively. Furthermore, caregivers of male children and those who needed help paying for health care had an aOR of 4.61 (1.34-15.68) and 3.06 (1.06-8.87) of significant caregiver burden, respectively. Limitations: The study was limited by its cross-sectional design and the use of generic rather than disease-specific instruments. Conclusion: One in every 6 caregivers of children with idiopathic NS reported significant caregiver burden, and it was associated with psychological distress. Our findings underscore the need for psychosocial support for caregivers of children with NS, especially those with identifiable vulnerability.


2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Nguyen Tuong Pham ◽  
Jia Jia Lee ◽  
Nhu Hiep Pham ◽  
Thi Do Quyen Phan ◽  
Khoa Tran ◽  
...  

Abstract Background There is very limited evidence on the existence of cancer-related perceived stigma and self-blame among patients with advanced cancer in Asia, and how they are associated with psychosocial outcomes. This study aimed to address the gap in the current literature by (1) assessing perceived stigma, behavioural self-blame and characterological self-blame among Vietnamese patients with advanced cancer, and (2) investigating the associations of perceived stigma and self-blame (behavioural and characterological) with depression, emotional well-being and social well-being. Methods This cross-sectional study involved 200 Vietnamese patients with stage IV solid cancer. Depression was measured using the Center for Epidemiologic Studies Depression (CES-D) Scale. Emotional well-being and social well-being were measured with the relevant domains of the Functional Assessment of Cancer Therapy-General (FACT-G) scale. Perceived stigma was assessed using the sense of stigma subscale of Kissane’s Shame and Stigma Scale. Behavioural self-blame and characterological self-blame were measured by the patients’ answers to the questions on whether their cancer was due to patient’s behaviour or character. Multivariable linear regressions were used to investigate the associations while controlling for patient characteristics. Results Approximately three-fourths (79.0%, n = 158) of the participants reported perceived stigma with an average score of 20.5 ± 18.0 (out of 100). More than half of the participants reported behavioural self-blame (56.3%, n = 112) or characterological self-blame (62.3%, n = 124). Higher perceived stigma was associated with lower emotional well-being (ß = -0.0; p = 0.024). Behavioural self-blame was not significantly associated with depressive symptoms, emotional well-being or social well-being. Patients who reported characterological self-blame reported greater depressive symptoms (ß = 3.0; p = 0.020) and lower emotional well-being (ß = -1.6; p = 0.038). Conclusion Perceived stigma and self-blame were common amongst Vietnamese advanced cancer patients. Perceived stigma was associated with lower emotional well-being while characterological self-blame were associated with greater depressive symptoms and lower emotional well-being. Interventions should address perceived stigma and self-blame among this population.


2019 ◽  
Vol 4 (4) ◽  
pp. 151-155
Author(s):  
NIKETA THAKUR ◽  
Sushmita Ghoshal

Background: While treating patients with the advanced disease it becomes very challenging for the clinicians to decide as to when the active treatment is justified and when should palliative care be introduced in patient's treatment. American Society of Clinical Oncology (ASCO) suggested that patients with advanced cancer, regardless of patient or outpatient, should receive dedicated palliative care services, early in the disease course, simultaneous with active treatment. Similar recommendations have been proposed by the European Society of Medical Oncology (ESMO). Keeping in view this background, we aimed to do this study. Aim: To study the impact of the introduction of early palliative care into routine oncological management on patient's survival.Methods: This retrospective cross-sectional study is based on hospital data for patients who died in the hospice between the year 2017 and 2018. The complete information including age, gender, date of death, diagnosis, procedures, and medical interventions, as well as the date of documentation, was obtained of each patient.Results: A total of 27 patients were enrolled in this study. The mean age at presentation was 50.3 years. 11 (40.7%) patients received oncological treatment integrated with palliative care in the last month of life. The median duration of survival from diagnosis till death was 7 months in the patients who received only palliative care and 10 months in patients who received integrated onco-palliative care in the last month of life (P=0.452). 14 (51.8%) patients received early palliative care. The median survival of the patients who received early palliative care and of those who were offered palliative care towards the end of life was 8.5 months and 7 months respectively (P=0.040).Conclusion: Based on our results, we strongly believe that early palliative care when integrated into standard oncological treatment in advance stage cancer patients can prolong patient's survival.


2018 ◽  
Vol 16 (6) ◽  
pp. 648-655 ◽  
Author(s):  
Andrea Bovero ◽  
Nader Alessandro Sedghi ◽  
Rossana Botto ◽  
Chiara Tosi ◽  
Valentina Ieraci ◽  
...  

AbstractObjectiveHospice is a favored setting for dignity care. Studies on dignity dimension in end-of-life patients are growing. The Patient Dignity Inventory (PDI) is a tool that can lead to interesting information on dignity-related aspects of suffering. The study aimed to investigate dignity among end-of-life cancer patients, by examining the Italian version of the PDI factor structure and assessing the relationship between dignity and other patients’ psychosocial and spiritual variables to improve a patient-centered clinical practice.MethodThis is a cross-sectional study. Data were collected using a battery of self-administered validated rating scales. The sample included 127 hospice patients with a life expectancy of a few weeks and a Karnofsky Performance Status ≤40. Factor structure and concurrent validity of PDI and correlations between dignity and anxious and depressive symptomatology, quality of life, demoralization, personal coping styles, spiritual well-being, and spiritual daily experience were analyzed.ResultFactor analysis highlighted a five-factor solution, accounting for 60% of the overall variance. The factors were labeled Psychological Distress, Social Support, Physical Symptoms and Dependency, Existential Distress, and Loss of Purpose/Meaning. Dignity assessment evidenced that self-blame coping style, emotional and physical well-being, and depression were the loss of dignity significant predictors (R2 = 0.605; p < 0.01).Significance of resultsThe results point out the intercultural validity of the PDI and empower an accurate detection of dignity-related distress sources in the daily clinical practice. Personality traits seem to have an active role in the loss of dignity, whereas spirituality is confirmed to be positively involved in dignity enhancement.


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