scholarly journals BURDEN AMONG FAMILY CAREGIVERS OF ADVANCED-CANCER PATIENTS IN INDONESIA

2018 ◽  
Vol 4 (3) ◽  
pp. 295-303 ◽  
Author(s):  
Ike Wuri Winahyu Sari ◽  
Sri Warsini ◽  
Christantie Effendy

Background: There have been various studies into the family caregivers’ experiences in taking care of advanced-cancer patients. But, a study exploring the burden among family caregivers has not yet been conducted in Indonesia, a country which has strong family bonds among family members.Objective: This present study aimed to identify the burden among family caregivers of advanced cancer patients.Methods: This study was a cross-sectional study conducted from December 2016 to February 2017 on 178 consenting family caregivers and advanced cancer patients, selected using a purposive sampling technique. The Caregiver Reaction Assessment (CRA) was used to measure their burden. Data were analyzed using descriptive analyzes and bivariate analyzes.Results: The burden among family caregivers was 2.38 ± 0.38 (mean range 1-5). The highest burden was in the disrupted schedule domain.Conclusion: Our findings identified that the burden among family caregivers was at the medium level. The length of care per day and family support are potential targets for preventative intervention strategies to reduce the burden among the family caregivers.

2020 ◽  
pp. 003022282094508
Author(s):  
Eylem Pasli Gurdogan ◽  
Berna Aksoy ◽  
Ezgi Kinici

This study was conducted to examine the importance of the concept of a good death and the contributing factors from the perspectives of family caregivers of advanced cancer patients. This descriptive and cross-sectional study, conducted with 182 family caregivers, were collected using a questionnaire form and the “Good Death Scale”. The number and percentage distribution, multiple linear regression were used evaluation of data. The total score of the Good Death Scale was 62.65 ± 4.60. The factors contributing to the importance of the concept of a good death were determined as the presence of chronic disease; the type of treatment given to the patient; the presence of another family member who was previously diagnosed with cancer; the presence of a family member who has died of cancer and previously caregiving to a terminally ill family member. This study revealed that the concept of a good death is seen as very important.


2019 ◽  
Vol 10 (4) ◽  
pp. 435-442 ◽  
Author(s):  
Irene Teo ◽  
Drishti Baid ◽  
Semra Ozdemir ◽  
Chetna Malhotra ◽  
Ratna Singh ◽  
...  

BackgroundFamily caregivers of patients with advanced cancer have been reported to provide long hours of care and be at risk for poor psychological outcomes. Although research has focused on the nature of caregiving burden, little attention has been paid to identifying protective factors that improve caregiver psychological outcomes.AimWe examined the relationship between caregivers’ time spent caregiving and the following psychological outcomes: anxiety, depression and caregiving esteem. Subsequently, we explored the main and moderating effects of caregiver-perceived self-competency and sense of meaning on caregiver psychological outcomes.Design/participantsCross-sectional analysis was conducted using the baseline data from an ongoing cohort study. Family caregivers of advanced cancer patients (n=287) were recruited from two tertiary hospitals in Singapore.ResultsTime spent caregiving was not significantly associated with caregiver anxiety, depression or caregiving esteem. However, significant main effects of self-competency on anxiety and caregiving esteem; and sense of meaning on anxiety, depression and caregiving esteem were observed. Moderator analyses further indicated that self-competency attenuated the positive relationship between time spent caregiving and anxiety, while sense of meaning attenuated the negative relationship between time spent caregiving and caregiving esteem.ConclusionGreater perceived self-competency and sense of meaning are related to better caregiver psychological outcomes, and protect caregivers from worsening outcomes as caregiving hours increase. Our findings suggest that screening caregivers for distress is an important part of care, and that supportive interventions for caregivers should aim to enhance their perceived caregiving competencies and the ability to make meaning of their caregiving role.


2012 ◽  
Vol 2012 ◽  
pp. 1-7 ◽  
Author(s):  
Chung-Wah Cheng ◽  
Annie O. L. Kwok ◽  
Zhao-Xiang Bian ◽  
Doris M. W. Tse

Constipation is a common problem in advanced cancer patients; however, specific clinical guidelines on traditional Chinese medicine (TCM) syndrome (Zhang) are not yet available. In this cross-sectional study, the TCM syndromes distribution and their common symptoms and signs among 225 constipated advanced cancer patients were determined. Results showed that 127 patients (56.4%) and 7 patients (3.1%) were in deficient and excessive patterns, respectively, while 91 patients (40.4%) were in deficiency-excess complex. The distributions of the five syndromes were:Qideficiency (93.3%),Qistagnation (40.0%), blood (Yin) deficiency (28.9%), Yang deficiency (22.2%), and excess heat (5.8%). Furthermore, age, functional status, and level of blood haemoglobin were factors related to the type of TCM syndrome. A TCM prescription with the functions on replenishing the Deficiency, redirecting the flow ofQistagnation and moistening the dryness caused by the blood (Yin) deficiency can be made for the treatment of advance cancer patients with constipation. Robust trials are urgently needed for further justifying its efficacy and safety in evidence-based approaches.


2020 ◽  
Vol 10 (3) ◽  
pp. 339-349
Author(s):  
Ike Wuri Winahyu Sari ◽  
Novita Nirmalasari

Background: Family caregivers spend 24 hours a day looking after and assisting patients. However, they are not always adequately prepared for all the problems they face. There is a lack of evidence exploring caregivers’ preparedness among family caregivers of patients with non-communicable diseases in Indonesia.Purpose: This study aimed to identify caregivers’ preparedness among family caregivers of patients with non-communicable diseases.Methods: This was a cross-sectional study conducted on 120 Indonesian family caregivers for patients with non-communicable diseases, who were selected using a purposive sampling technique. Data were collected using the Indonesian version of the Preparedness for Caregiving Scale (PCS) which had been validated before its use. The possible scores of this tool ranged from 0.00 to 4.00. The higher the score, the more prepared the family caregivers were. Data were analyzed using one way ANOVA .Results: Family caregivers reported feeling of moderately prepared for caregiving. The score of family caregiver preparedness for patients with diabetes, cancer, and chronic kidney disease were 2.97±0.42; 2.83±0.40; 2.89±0.49, respectively with possible range from 0.00 to 4.00. There were no differences on the caregivers’ preparedness among family caregivers of patients with non-communicable diseases (p=0.387).Conclusion: Caregivers’ preparedness is an essential element of patient care. Nurses have to be proactive in assessing each family caregiver’s preparedness to enhance the quality of life of both the family caregivers and the patients themselves, so that they can be empowered as a source of nursing care.


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.


2012 ◽  
Vol 30 (15_suppl) ◽  
pp. 6106-6106
Author(s):  
Areej El-Jawahri ◽  
Lara Traeger ◽  
Elyse R. Park ◽  
Joseph A. Greer ◽  
William F. Pirl ◽  
...  

6106 Background: Patients with advanced cancer require accurate perception of their illness in order to make informed decisions regarding their care. However, little is known about the accuracy of these patients’ illness and prognostic understanding. The objectives of this study are to 1) examine prognostic understanding in patients with advanced gastrointestinal (GI) cancers, 2) assess patient preferences for prognostic information, and 3) explore associations of perceptions with quality of life (QOL) and mood. Methods: Cross-sectional study of 50 patients within 6-12 weeks post diagnosis of advanced GI cancers (gastric, esophageal, pancreatic, and hepatobiliary). We assessed patients’ perceptions of prognosis with a 15-item questionnaire, the Perception of Treatment and Prognosis Questionnaire. QOL and mood were assessed using the Functional Assessment of Cancer Therapy-General (FACT-G) and hospital anxiety and depression scales (HADS), respectively. Results: We enrolled 50/62 (80%) consecutive eligible patients within an 11-month period. 50% (25/50) of participants responded that the primary goal of their cancer treatment was to “cure their cancer.” Similarly, 54% (27/50) reported that they were “somewhat” to “extremely likely” to be cured from their cancer. Only 22% (10/49) reported having a discussion about their end-of-life care preferences with their oncologist. 76% (38/50) reported wanting to know as many details as possible about their cancer diagnosis and treatment and 64% (32/50) rated this information as “extremely important.” Patients who perceived knowing about their prognosis as “extremely helpful” reported a better QOL (p = 0.009), lower symptoms of anxiety (p = 0.02) and depression (p = 0.02). Conclusions: Although the majority of patients report that they desire detailed information about their prognosis, half incorrectly perceived their cancer as curable and the majority did not discuss their end-of-life care preferences with their oncologist. Patients who found learning about their prognosis to be extremely helpful reported better QOL and mood. Studies of interventions to increase advanced cancer patients’ knowledge of their prognosis and to encourage end-of-life discussions are warranted.


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