While this study is a secondary analysis using composite data from surveys on social problems of patients and their spouses, each survey was approved by the Ethics Committee of Tokyo Medical and Dental University Medical Hospital. Major depression is defined as at least five of the following symptoms for two weeks o… In the present study, to investigate difficulty perceived by spouses regarding the social problems of patients, we asked spouses to answer the question, “Have you ever experienced any difficulty concerning the following matters at home, at work, or in your community because of the disease (cancer) and treatment of the patient (your spouse)?” on the 60 items in the same manner. The checklist is a useful tool for highlighting problems. Recent studies have increasingly reported on physical problems associated with cancer and its treatment and psychological problems, such as anxiety and depression. Just under half (48.9%) of patients had adequate social support, 51.1% poor social support (Table 2). Google Scholar. Gendai no Esupuri. Consequently, patients often face problems in various aspects of social life, such as family … 2627 Doctors do not recognize about 35% of these cases and many patients remain untreated. One of the major issues facing cancer patients is access to funds. Cancer care today often provides state-of-the-science biomedical treatment, but fails to address the psychosocial (psychological and social)problems associated with the illness. Effects of socioeconomic factors and cancer survivors’ worries on their quality of life (QOL) in Japan. Takeuchi, T., Ichikura, K., Amano, K. et al. Second, differences in the degree of social difficulties experienced by the patient and spouse group were analyzed by independent two-sample t-tests. Br J Cancer. These effects are magnified in the presence of any psychological and social stressors that predate the onset of … Quinn GP, Goncalves V, Sehovic I, et al. In other words, it was considered important to change the approach method based on age and sex, and to intervene at the time of diagnosis rather than when the cancer was more advanced. Health care providers should show sufficient concern for both patients and their spouses, particularly young and female spouses. At least 50% of all cancer patients develop an ongoing psychiatric complication, and 1 in 3 is experiencing severe psychological distress at any one time. Learn about our remote access options, Imperial Cancer Research Fund, Cancer Medicine Research Unit, St James's University Hospital, Leeds, UK, Information and Statistics Division, NHS in Scotland, Edinburgh, UK, Imperial Cancer Research Fund, Medical Oncology Unit, Western General Hospital, Edinburgh, UK. Physical and psychosocial problems in cancer survivors beyond return to work: a systematic review. The consequences of this positioning are over-responsibility and self-sacrifice, physical costs and overwhelming emotions. ),” “complaint with health care providers,” “lack of information on treatment and disease state,” “lack of information on self-care (lack of knowledge on nutritional needs of patients or how to deal with anxiety),” “concerns for family members,” “lack of local support services,” “difficulty in making financial arrangements,” and “lack of information on welfare services available during treatment (lack of knowledge on the nursing-care insurance system or nursing-care facilities and equipment).” Generally, compared to men who take care of their wives with cancer, women who take care of their husbands with cancer have higher mental morbidity (high levels of distress, depression, and anxiety, and a low level of mental health), physical morbidity (low physical health score, decreased physical function, and loss of physical fitness), and social morbidity (low satisfaction in marriage and limited social support) [12, 23, 24]. The significance level was set at 5%. Missing data rates ranged from 4 to 18% over the 16 items. Teens are often establishing their own identities at this time and developing social, emotional, and financial independence. This may be due to lack of a suitable questionnaire. That is why we prepared the scale using the KJ method and confirmed the reliability with an α coefficient. Depression, cancer-related post-traumatic stress, or other emotional problems. volume 17, Article number: 83 (2018) Some of the greatest challenges faced by young adults with cancer come from the fact that this tends to be a time of great change in a person’s life, which comes with many of its own stresses. That’s where social workers step in. Men caregivers positioned caring as a competency task which they had mastered, and which provided them with satisfaction. Thus, in future studies, more accurate medical data need to be collected by conducting questionnaire or interview surveys at medical institutions in combination with review of medical records. “Our role is to help patients think through the impacts of their diagnosis, … Continued The authors received no financial support for the research, authorship, and/or publication of this article. 2015;6:19–51. Support Care Cancer. Patient-Reported Outcome Measures for the Identification of Supportive Care Needs in People With Lung Cancer. Factor analysis produced a four‐factor structure with components labelled daily living, relationships, economics and emotions. Stress can also result in relationship strain, financial difficulties, and the stress of the physical illness itself. Social support has been found to be empirically related to influencing health outcomes. Developing a model of decision-making about complementary therapy use for patients with cancer: A qualitative study. Current Problems in Cancer seeks to promote and disseminate innovative, transformative, and impactful data on patient-oriented cancer research and clinical care. A diagnosis of cancer can throw all of these things into disarray. Google Scholar. The development of “ultrabrief” screening … Psychol Bull. Distress in couples coping with cancer: a meta-analysis and critical review of role and gender effects. Reliability and validity tests endorsed the factor structure with the components on economics and emotions being particularly credible. Participation and Satisfaction with Surgical Treatment Decision-Making in Breast Cancer Among Chinese Women. It is estimated that 16-25% of cancer patients develop depression. This brings back … Siegel K, Raveis VH, Houts P, Mor V. Caregiver burden and unmet patient needs. ).” Patients and partners are interdependent in that cancer impacts on their shared life, both emotionally and practically. Because of current advances in medical technology and availability of outpatient care, the length of hospital stay has been reduced for cancer patients. A cancer diagnosis affects every area of a person’s life. Patients need support coping with a range of distressing emotions such as anxiety, depression, and confusion. 2002;87:1099–104. This was a cross-sectional internet-based study. Use the link below to share a full-text version of this article with your friends and colleagues. 2008;23:945–63. 2013;22:2693–701. Determinants of quality of life in patients with cancer. However, the reality of the social problems experienced by the families who support cancer patients has not yet been sufficiently understood. 1999;13:37–44. Article  In the young subgroup, the degree of difficulty perceived by the spouses was as high as that of difficulty perceived by the patients for all subcategories except “difficulty in adapting to changes in the social environment (I feel that my appearance has changed or that I am treated differently).” People aged 39 years or younger, who were classified as the younger generation in the present study, are called “adolescents and young adults (AYA).” Cancer patients in the AYA generation experience, after diagnosis and treatment, not only difficulties associated with social relationships, work, academic background, property, etc., but also many physical and psychosocial problems, such as interruptions to romantic and/or intimate relationships, reconsideration of family planning, infertility, and body image dissatisfaction [19, 20]. First, the results may have been affected by measurement bias because of the use of data from internet-based surveys. Because there have been few studies that directly examined these problems, we would like to discuss them in associations with their consequences, such as depression, distress, morbidity, burden, unmet need, and decreased quality of life. Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. It is … Smoking; Alcohol; Diet; Obesity; Sun and UV; Coping with cancer. Spouse caregivers provide the most extensive and comprehensive care, maintain the caregiver role longer, tolerate greater levels of disability than other caregivers, and experience more severe lifestyle adjustments [11]. The internet survey company we used is a Japanese company specializing in academic research. Wright P, Downing A, Morris EJ, et al. My husband and I rely on each other. Rhee YS, Yun YH, Park S, et al. 2010;19:1285–93. Cancer. First, sex, age group, and presence or absence of recurrence were selected as covariates that should be adjusted based on clinical judgment, and propensity scores for these covariates were estimated using logistic regression models. The study asked participants about their access to insurance, services, and providers, and direct and indirect costs of treatment. Number of times cited according to CrossRef: Validity and Reliability of the Turkish Version of Needs Based Biopsychosocial Distress Instrument for Cancer Patients (CANDI). While some reports indicate that distress severity is comparable between patients and their spouses or partners, other reports indicate that patients’ distress is more severe than that of their spouses or partners, and there are even reports indicating that distress of spouses or partners is more severe than that of patients [17]. PubMed  Li QP, Mak YW, Loke AY. For the spouse survey, in the same manner in November 2016, we selected spouses of patients who developed cancer within the previous 5 years. Springer Nature. Ussher JM, Sandoval M. Gender differences in the construction and experience of cancer care: the consequences of the gendered positioning of cares. Cull A, Stewart M, Altman DG. Working off-campus? Consequently, patients often face problems in various aspects of social life, such as family life, relationships with people around them, work, income, leisure activities, and relationships with health care providers [1,2,3,4,5]. Social problems are common and important to cancer patients. PubMed Central  This may be due to lack of a suitable questionnaire. This is a cross-sectional study using internet-based surveys. Psychooncology. However, in this study, comparison was made while the differences in background problems were minimized as much as possible by matching propensity scores for data on sex, age group, and presence or absence of recurrence. Diagnosis of and treatment for cancer may not only create physical and emotional difficulties for patients but may also have an impact on social aspects of patients' lives. Takashi Takeuchi. Palliat Med. This paper presents a psychometric analysis of the Problems Checklist with a view to assessing its usefulness as a screening tool for social problems in oncology. California Privacy Statement, Under these circumstances, cancer patients and their families are required to deal with various social problems arising as the disease and treatment progress. Recent studies have increasingly reported on physical problems associated with cancer and its treatment and psychological problems, such as anxiety and depression. Assessing the social impact of cancer: a review of available tools. Finally, scores on each subcategory were calculated by dividing the total score by the number of items in each subcategory. 2005;103:1072–81. Distress screening in the clinical environment can be used to detect persons who may benefit from additional emotional support. The diagnosis and treatment of cancer often not only impose physical and mental distress on patients, but also substantially change their daily lives. The content and amount of information given by medical oncologists when telling patients with advanced cancer what their treatment options are. Health care providers should show sufficient concern for both patients and their spouses, particularly young and female spouses. 2008;26:5890–5. Breast cancer is no longer a simple disease to explain, and patients already experiencing emotional turmoil enter a strange new world of esoteric language and concepts. This research was not a qualitative study. PubMed Google Scholar. OBJECTIVE: Little is known about the social problems experienced by cancer patients in non-Western countries. The … Some might also be starting families of their own. Mentioning: 6 - Diagnosis of and treatment for cancer may not only create physical and emotional difficulties for patients but may also have an impact on social aspects of patients' lives. The full text of this article hosted at iucr.org is unavailable due to technical difficulties. A diagnosis of cancer can throw all of these things into disarray. The t-test results showed that the degree of “difficulty in seeking expert advice on the disease state and treatment” was comparable between the patient and spouse groups (t = .75, p = .45), whereas the degree of difficulty for all the other subcategories was higher in the patient than the spouse group (Table 3). Quality of life in adolescent and young adult cancer patients: a systematic review of the literature. Sign in to set up alerts. 2012;20:2249–57. Some of the greatest challenges faced by teens with cancer come from the fact that this tends to be a time of great change in a person’s life, which comes with many of its own stresses. These effects contribute to emotional distress and mental health problems among cancer patients, and together can lead to substantial social problems, such as the inability to work and reduced income. Social and Emotional Side Effects of Cancer It's not uncommon for cancer patients to face a mix of emotions and adjustment issues. Evaluation was undertaken using data from an earlier study of 505 patients who completed the checklist. Patients who have a high level of distress when they are diagnosed with cancer are more likely to have continued high levels of distress after their diagnosis. RSS | open access RSS. I don't expect a whole lot from people; so, I don't get as disappointed. For this reason, young caregivers in this generation often seem to feel burdened [21, 22] and to perceive a high degree of difficulty. Epub ahead of print. Cite this article. Editor-in-Chief: Shivaani Kummar, MD, P. Lara Jr., MD . It's not that cancer is catching, it's that people get scared. Manage cookies/Do not sell my data we use in the preference centre. (in Japanese), Kawakita J. Hassoho [Aboduction]. Ussher et al. Social & Emotional Impacts of Cancer Almost all cancer survivors will face psychological and emotional issues that can show up many years after treatment. If you do not receive an email within 10 minutes, your email address may not be registered, Similarly, Dr. Naoto Ueno (@teamoncology), Executive Director of Morgan Welch Inflammatory Breast Cancer Research Program and Clinic at MDACC, did not feel that patients’ use of social media should have boundaries, as long as they are truthful about what they share online. Cookies policy. To adjust the scale of the social problems created by Hisamura et al., we used the KJ method which is a qualitative synthesis method. (in Japanese), Kawakita J. Zoku Hassoho [Aboduction: part two]. Little is known about the social problems experienced by cancer patients in non‐Western countries. Because terminal home care is expected to be further promoted in the future, it is assumed that the main site of cancer patient care will increasingly be shifted from hospitals to homes. Muzzatti B, Annunziata MA. Hodges LJ, Humphris GM, Macfarlane G. A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Article  For each subcategory, α coefficient was calculated to evaluate internal consistency. The cancerous cells can invade and destroy surrounding healthy tissue, including organs. PubMed Central  Cancer sometimes begins in one part of the body before spreading to other areas. The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request. The degree of social difficulties differed between the patients and spouses in the present study because both groups might have had different underlying problems. Br J Cancer. In the male patient/female spouse subgroups, the mean difficulty scores in the spouses increased for the following subcategories: “difficulty in seeking expert advice on the disease state and treatment,” “complaints with health care providers,” “lack of information on treatment and disease state,” “lack of information on self-care,” “concerns for family members,” “lack of local support services,” “difficulty in making financial arrangements,” and “lack of information on welfare services available during treatment.” The degree of difficulty for these subcategories was comparable between patients and spouses (Table 5). This list contains 60 items, on which patients are asked to answer the question, “Have you ever experienced any difficulty concerning the following matters at home, at work, or in your community because of your disease and treatment?” by choosing one of the following 6 options: It has been very difficult; it has been fairly difficult; it has not been very difficult; it has never been difficult; I do not know; and not applicable (Table 1). Screening for social problems has not become part of routine oncology practice. The Psychosocial Impact of Cancer on the Individual, Family, and Society If physicians do not tell patients the diagnosis, a risk always exists that someone will inadvertently share the information with the patient, causing the patient to greatly distrust the healthcare team and family. We chose this approach because we study social systems and social problems peculiar to Japan that cannot be measured by existing social problem scales. Catt S, Starkings R, Shilling V, Fallowfield L. Patient-reported outcome measures of the impact of cancer on patients’ everyday lives: a systematic review. Kobayashi K, Morita S, Shimonagayoshi M, et al. Higher emotional distress in female partners of cancer patients: prevalence and patient-partner interdependencies in a 3-year cohort. Table 2 shows the frequency distributions of the covariates and other background factors for each group. Psychooncology. In this previous study, the list of social difficulties of patients was developed through discussion between an oncology social worker and a psychiatrist who reviewed articles published in Japan and other countries on social problems, distress, stressors, and patients’ unmet needs. Patients with cancer and their families often experience an enhanced need for "social support." Data were collected by KA, WT, KH, analyzed by KI, and interpreted by TT and KI. The Cancer Support Community did a study in late 2016 to explore this question and found that people with cancer face challenges with costs and delays in health care. 1991;68:1131–40. Problems at home. By using this website, you agree to our Please check your email for instructions on resetting your password. View aims and scope Submit your article Guide for authors. For the patient survey, in January 2010, we screened all registered members of the panel of internet-survey company A and selected those who developed cancer within the previous 5 years and experienced social problems. Payne S, Smith P, Dean S. Identifying the concerns of informal carers in palliative care. Explore journal content Latest issue Articles in press Article collections All issues. Second, because of arrangements for this study and funding issues, several years passed between the patient and spouse surveys, and we were unable to collect data from patient-and-spouse pairs. Google Scholar. Causes of cancer. The diagnosis and treatment of cancer often not only impose physical and mental distress on patients, but also substantially change their daily lives. 2005;60:1–12. Enter your email address below and we will send you your username, If the address matches an existing account you will receive an email with instructions to retrieve your username, I have read and accept the Wiley Online Library Terms and Conditions of Use. PubMed  Spouses’ experience of caregiving for cancer patients: a literature review. Then, items with mismatched labels were labeled through discussion between the psychologists. Copyright © 2001 John Wiley & Sons, Ltd. Cancer is now the biggest cause of mortality worldwide. 29 There are several categories of depression with major depression being the most noticeable type. 21,25 These conditions are often not detected by health professionals. Hisamura K, Matsushima E, Tsukayama S, et al. Depression in family caregivers of cancer patients: the feeling of burden as a predictor of depression. This paper presents a psychometric analysis of the Problems Checklist with a view to assessing its … A common explanation is that socially isolated individuals fare worse due to reduced instrumental support (i.e., assistance meeting the demands of treatment). Psychosocial Issues for the Elderly With Cancer. This paper discusses the importance of identifying the psychological and social concerns of breast cancer patients in the medical setting, and assisting them in obtaining appropriate psychosocial services. The KJ method is a qualitative synthesis method developed to classify categorical data by Kawakita [15, 16]. Privacy Supports open access. 1 in 2 people will develop some form of cancer during their lifetime. Although patients had higher scores on most subcategories, young spouses aged 39 or younger and female spouses had difficulty scores as high as the corresponding patients on many subcategories. Cancer is a condition where cells in a specific part of the body grow and reproduce uncontrollably. The present study aimed to identify cancer-associated social problems from the perspectives of both patients and their spouses and to compare and analyze differences in their problems. © 2021 BioMed Central Ltd unless otherwise stated. Soc Sci Med. We investigated the social difficulties of cancer patients and patients’ spouses. Young adults are often establishing their own identities at this time and developing their own social, emotional, and financial independence. Patients’ needs assessment in cancer care: a review of assessment tools. Life situation and psychosocial care of adolescent and young adult (AYA) cancer patients – study protocol of a 12-month prospective longitudinal study. Current Problems in Cancer. Managing symptoms and side effects; Counselling and talking; Money and travel; Death and dying; Cancer Chat forum; Health Professionals. Article  Hisamura K. Problems in social lives cancer patients experience and the importance of social support. Eur J Oncol Nurs. Finding Social Support and Information Hearing the Oncologists' Perspective Trusted, compassionate information for people with cancer and their families and caregivers, from the American Society of Clinical Oncology (ASCO), the voice of the world’s cancer physicians and oncology professionals. Patient Relat Outcome Meas. 2013;60:178–87. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. The journey is both challenging and costly, and many experiencing it for the first time feel lost about how they should handle the changes cancer brings. 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