Preferences for Cancer Support Group Topics and Group Satisfaction Among Patients and Caregivers

This study investigated patients living with cancer and caregivers of patients living with cancer with regard to cancer support group content and satisfaction with this model of support (N = 3,723). Using a cross-sectional survey design participants were recruited through registered users of the NexCura Cancer Profiler website. Demographic and clinical variables, including perceived social support, were compared between patients and caregivers. Topic importance questions, and the proportion of patients and caregivers who selected those topics identified as very important and important, was calculated and compared. Group satisfaction was elicited and compared between patients and caregivers. This research can be used to inform, guide, and support group work helping address patient and caregiver need improving their quality of life.     

Spiritual Care Needs of Terminal Ill Cancer Patients

Objective: Terminal ill cancer patients experience spiritual distress and need spiritual care. They are in need of palliative care in the long term to alleviate suffering. The aim of the study was to investigate spiritual needs of terminal ill cancer patients. Methods: This study is a cross-sectional study. The participants were Thai terminal ill cancer patients from seven hospitals in northern, northeast, central, and southern regions of Thailand. Three-hundred-and-twenty-two participants were purposively selected. The instrument used in this study was a spiritual needs scale, consisting of 41 items with 4-point rating scale. Statistical analysis was F-test for one-way analysis of variance. Results: The majority of terminal ill cancer patients aged fifty-one years old. Most of them were females with end stage cancer status that did not respond to treatment. The overall spiritual needs of terminal ill cancer patients were at the moderate level (M = 18.21, SD = 2.56). The highest mean was found in the ‘prepare for death’ dimension, followed by the ‘have meaning, values, and life purposes’ and the ‘have opportunity to pursue most important things in life’ dimensions respectively and had different spiritual needs among status (F(3,318) = 3.66, p < 0.05), number of family members (F(8,313) = 5.07,  p < 0.05), living with family (F(2,319) = 3.91, p < 0.05), and spiritual anchor (F(2,319) = 4.13, p < 0.05). Conclusion: The study results provide insight into spiritual needs of terminal ill cancer patients which assists in improving the provision of holistic care to let the patients be happy at end-of-life phase.     

Coping Together and Apart: Exploring How Patients and Their Caregivers Manage Terminal Head and Neck Cancer

Head and neck cancer (HNC) challenges the physical, social, and psychological well-being of the individual, and their family and friends, with 50% of patients facing the prospect of dying within 5 years of diagnosis. To enhance care at the end of life, further understanding of how patients and their loved ones cope is needed. Findings from a qualitative study are presented which suggest that patients with terminal HNC and their caregivers cope individually, with support and as a dyad. Relationship qualities which might facilitate coping together as a dyad are described. These may aid distinction between coping together and acts of social support.     

Experiences of Family Caregivers of Cancer Patients Receiving Chemotherapy

Background: Cancer is a disease which affects not only patients but also their families physically and emotionally. The purpose of this study was to determine the needs, challenges and ways of coping of caregivers of cancer patients. Materials and Methods: In the study, a phenomenological approach was used. Data were collected through semi-structured individual interviews. The study sample comprised 16 family members providing care for a cancer patient. Results: The study findings are grouped under four main themes: the impact of caregiving, masking feelings, experienced challenges and expectations, and coping. During the caregiving process, patient relatives are affected physiologically, psychologically and socially. It was determined that patient relatives hid their feelings and avoided talking about the disease for fear that they might upset the patient, and that they had difficulty in coping with the patient’s reactions during the treatment process. Family members had difficulties arising from the health system, hospital conditions and treatment in addition to ransportation and financial problems. Support is very important in coping, but it was determined that some of the relatives of patients did not receive adequate support. Patient relatives expect that health care professionals should provide them with more information about their patient’s condition and the course of the disease that their patients should be dealt with by the physicians specialized in cancer, and that psychological support should be provided both for them and for their patient. Conclusions: During the caregiving process, family members are faced with many difficulties and they exhibit different coping behaviors which health care professionals should take into account.     

Quality of Life of Family Caregivers of Cancer Patients in a Developing Nation

Background: Quality of life (QOL) of family caregivers of cancer patients is usually affected due to increase in caregiver burden. Their QOL has not garnered much attention by many including the health professionals and community. This study aims to explore the QOL of family caregivers of cancer patients in a multi-ethnic country in Asia and to investigate its associate factors. Methods: This is a cross-sectional study where family caregivers and patients who were diagnosed of cancers within 12 months were recruited. QOL of caregivers were measured using The Caregiver Quality of Life Index-Cancer (CQOLC). Psychological distress was measured using Hospital anxiety and depressive scale. Logistic regression analysis was performed to determine the related factors of QOL of caregivers. Results: A total of 458 patients/caregiver pairs were included. Symptoms of anxiety and depression reported by caregivers were 24.9% and 24.2% respectively. Caregivers of patients with solid tumors have better CQOLC score compared to those who cared for patients with hematological cancers (91.25 vs 86.75). Caregivers of non-Malay ethnicity, those caring for patients with advanced stage cancer and with hematological cancers had significantly poorer QOL. QOL of caregivers are also significantly affected when patients demonstrated anxiety symptoms. Conclusion: This study provides detailed evaluation of the QOL of caregivers of cancer patients in Malaysia. The significant psychological distress and low caregiver QOL indicate the urgent need for comprehensive supports for caregivers with cancer patients, especially those caring for patients with haematological cancers.     

终末期肝癌患者的治疗分析

目的探讨终末期原发性肝癌（PLC,以下简称肝癌）患者的治疗方法。方法回顾性分析97例终末期肝癌患者的临床资料,对不合理治疗情况进行统计分析。结果 97例终末期肝癌患者中,死亡前1个月内的治疗中存在如下问题：16例发生消化道出血及肝癌破裂出血前后,应用有潜在致出血作用的头孢类抗菌素;25例死亡时给予胸外心脏按压,5例死亡前给予气管插管呼吸机维持呼吸,32例行腹腔穿刺抽腹腔积液,1例给予人工肝血浆置换,4例给予TACE治疗;66例（68.0%）患者给予1～3种中药或免疫制剂静脉点滴治疗,76例（78.4%）给予1～3种保肝药物治疗,31例（32.0%）患者临终前日输液量达到2000ml以上,其中21例（21.7%）给予静脉营养支持。结论终末期肝癌患者存在着治疗不规范情况,应尽快制定包括肝癌在内的各种器官癌症终末期的诊断标准和治疗指南,并以此作为规范终末期癌症的诊断和治疗,以减轻终末期癌症患者的痛苦和节约社会资源。     

终末期肺癌127例抗感染治疗分析

目的探讨终末期肺癌患者的抗感染治疗。方法对近3年来我院收治的127例终末期肺癌患者临床表现、合并肺部感染及抗菌药物应用和获益等情况进行回顾性分析。结果 127例终末期肺癌患者中合并肺部感染者112例(88.2%),其中103例(81.1%)患者给予抗感染治疗后症状均未改善,且均于1个月内死亡。结论终末期肺癌患者合并感染率高,抗菌药物应用品种广泛,但效果差。     

Perceptions and Experiences of Informal Caregivers of Breast Cancer Patients in South India: A Qualitative Study

Background: This study was conducted to explore the prevailing perceptions and experiences of caregiving burden among informal caregivers of women living with breast cancer in South India. Methods: In-depth interviews were conducted among breast cancer care-receivers (n=35) and their informal caregivers (n=39) and a thematic analysis was used to analyze the data. Informal caregiver in the context of this study was defined as one who takes up the responsibility of an informal caregiving role, and were either self-identified or acknowledged by the care-receivers. Results: Four main inductive themes in the domains of: emotional culpability, financial and workplace liability, psychosocial affliction, physical strain and health system demand were identified, that were associated with caregiver burden. Conclusion: Informal caregivers form an integral part of the cancer care continuum in India. It is recommended to factor in the identified themes while developing a caregiver needs assessment model in the context of caring for breast cancer patients in the Indian setting.     

Quality of Life of Male Spouse Caregivers for Breast Cancer Patients in China

Background: The aim of this study was to describe the characteristics of male spouse caregivers of breastcancer patients in China, assess their quality of life (QOL), and investigate the influencing factors. Materialsand Methods: A total of 243 breast cancer patient-spouse caregiver dyads were recruited from four hospitalsin Shanxi and Anhui province of China. A cross-sectional design was applied to collect data and the Chineseversion of the Medical Outcomes Study 36-item Short Form (SF-36) was used to measure caregivers’ QOL, andthe Chinese version of M.D. Anderson Symptom Inventory (MDASI-C) was applied to measure patient symptomseverity and interference. Pearson’s correlation was used to examine the correlations between caregiver burdenand QOL. The multiple regression analysis was used to determine the most predictive factors influencing QOL.Results: The scores of all SF-36 scales were above 50.0, which were much lower than that of general mainlandChinese males. Mental QOL was significantly worse than physical QOL. Spouses demographic characteristics,caregiving-related variables and patient symptoms were related to spouse QOL. Caregiver burden has a negativerelationship with QOL. Conclusions: A decrease in life events and patient symptoms, as well as increase in spousesleeping time and family income, ought to improve QOL.     

Caregiver Burden and Perceived Social Support among Caregivers of Patients with Cancer

The purpose of this study is to describe the relationship between caregiver burden and perceived social supportamong caregivers of patients with cancer. The research was conducted in a university hospital in İzmir, Turkey.Eighty patient relatives who provided care service to patients with cancer who were admitted at hematology andoncology clinics participated in the study. The findings indicated that the care burden score was mild level. Themean of the perceived social support score was 58.4±21.0 supporting the conclusion that there is a weak andnegative-direct relation between caregiver and perceived social support and that as the perceived social supportincreased, conversely, care burden decreased.     

Health-Related Quality of Life (HRQOL) of Gastrointestinal Cancer Caregivers: The Impact of Caregiving

Objective: This study examined the quality of life (QOL) of caregivers for gastrointestinal (GI) cancer patients, andassociated factors. Methods: A cross-sectional study was conducted at three referral hospitals in Klang Valley, Malaysia.A total of 323 pairs of patients and caregivers from the oncology units of these hospitals completed questionnairesin Malay. The QOL of caregivers was measured using The Malay Caregiver Quality of Life questionnaire. Theindependent variables were caregiver and patient factors, care-related factors, the Caregiver Strain Index-Malay, andthe Multidimensional Scale of Perceived Social Support-Malay. Simple and multiple linear regression analyses wereperformed to determine the factors associated with the QOL. Variables with p < 0.05 were considered significant in themultiple analyses. Results: Female caregivers were 68.1% of the total, and 46.4% caregivers were spouses to cancerpatients. Their mean age was 44.50 (13.29) years old. About 51.7% were of Malay ethnicity. The mean score for QOLwas 80.17 (21.58). Being a male caregiver (beta = 5.165, p = 0.011) and of Indian ethnicity (beta = -9.163, p = 0.001)were strongly associated with caregiver QOL. Male patients contributed higher QOL scores for the caregivers comparedto female patients. There was an inverse relationship among caregiving strain, duration of caregiving, and caregiverQOL. Conclusion: The identification of factors that affect QOL will allow healthcare providers to develop appropriateinterventions. It is important that caregivers be in good health so as not to compromise the care they provide to theirpatients.     

Oral Psychosomatic Disorders in Family Caregivers of Oral Squamous Cell Carcinoma Patients

Objective: To investigate the oral psychosomatic disorders (PSDs) in family caregivers (FCs) of oral cancer (OC) patients and to evaluate the correlation between these oral PSDs to severity of depression anxiety and stress. Methods: A total of 50 participants were included each in first degree relative (FDR), second degree relative (SDR) and control group. All the participants completed DASS-21 questionnaire and were subjected to thorough clinical history and oral examination. Results: All the FCs reported statistically significant higher mean levels of depression, anxiety and stress compared to controls (p˂0.001). A significantly greater number of FCs (40.00%) reported oral PSDs than control group (12.00%). Most prevalent oral PSD in FCs was aphthous stomatitis followed by oral lichen planus, bruxism, burning mouth syndrome and myofascial pain dysfunction syndrome. Moreover, there was a preponderance of these diseases in FDR (60.86%) compared to SDR (26.08%). FCs with moderate to very severe depression, anxiety and stress showed higher prevalence of these oral PSDs compared to the ones with mild depression, anxiety and stress. Conclusion: The observations of higher prevalence of oral PSDs in FCs with psychological alterations can enhance healthcare professionals’ awareness to better understand FCs’ oral healthcare needs.     

The Supportive Care Needs of Regional and Remote Cancer Caregivers

Objective: As cancer survival rates continue to increase, so will the demand for care from family and friends, particularly in more isolated settings. This study aims to examine the needs of cancer caregivers in regional and remote Australia. Methods: A total of 239 informal (i.e., non-professional) cancer caregivers (e.g., family/friends) from regional and remote Queensland, Australia, completed the Comprehensive Needs Assessment Tool for Cancer Caregivers (CNAT-C). The frequencies of individuals reporting specific needs were calculated. Logistic regression analyses assessed the association between unmet needs and demographic characteristics and cancer type. Results: The most frequently endorsed needs were lodging near hospital (77%), information about the disease (74%), and tests and treatment (74%). The most frequent unmet needs were treatment near home (37%), help with economic burden (32%), and concerns about the person being cared for (32%). Younger and female caregivers were significantly more likely to report unmet needs overall (OR = 2.12; OR = 0.58), and unmet healthcare staff needs (OR = 0.35; OR = 1.99, respectively). Unmet family and social support needs were also significantly more likely among younger caregivers (OR = 0.35). Caregivers of breast cancer patients (OR = 0.43) and older caregivers (OR = 0.53) were significantly less likely to report unmet health and psychology needs. Proportions of participants reporting needs were largely similar across demographic groups and cancer type with some exceptions. Conclusions: Caregiver health, practical issues associated with travel, and emotional strain are all areas where regional and remote caregivers require more support. Caregivers’ age and gender, time since diagnosis and patient cancer type should be considered when determining the most appropriate supportive care.     

Economic Burden for Informal Caregivers of Lung and Colorectal Cancer Patients

Background.

Informal care provides many benefits to cancer patients, but can be costly to caregivers. This study quantified the economic burden for informal caregivers of lung cancer (LC) and colorectal cancer (CRC) patients, examining differences by cancer type, phase of disease, stage at diagnosis, patient age, and relationship.

Methods.

A cross-sectional survey of caregivers of LC and CRC patients participating in the Share Thoughts on Care survey was conducted. Economic burden was calculated using the opportunity cost of caregiver time, the value of work hours lost, and out-of-pocket expenditures. Factors associated with economic burden to caregivers were modeled using fixed-effects generalized least squares estimation.

Results.

Informal caregivers (1,629) completed mailed surveys. Of these, 663, 822, and 144 were surveyed during the patient''s initial phase (first year after diagnosis, not within 6 months of death), continuing phase (after 1 year, not within 6 months of death), and terminal phase (within 6 months of death) of disease, respectively. The accumulated economic burdens for caregivers were $7,028, $19,701, and $14,234 for those evaluated during the patient''s initial phase, continuing phase, and terminal phase of disease, respectively. Economic burden was higher for caregivers of LC patients than CRC patients (p = .044) and for caregivers of patients diagnosed at stage 4 versus stage 1 (p = .001). Spouses faced higher economic burden than other relatives (p = .000) or friends (p = .000).

Conclusions.

Economic burden for informal caregivers of LC and CRC patients is substantial and should be included in estimates of the societal cost of cancer care.