Psychological concerns of Indian women with breast cancer in different national contexts: a systematic review and mixed-methods synthesis.

BACKGROUND: Breast cancer is becoming the most common cancer among women of Indian origin. However, little is known about the psychological impact of the disease and its treatment among this population. AIM: To improve understanding of psychological symptoms among Indian women with breast cancer. DESIGN: This is a systematic literature review and critical interpretive synthesis. Medical Subject Headings(MeSH) terms and keywords for breast cancer, psychological symptoms and treatment were used to search databases from inception to 7 May 2019. The reference lists of the included articles were examined. Search results were screened against the inclusion criteria, data were extracted, and quality was appraised by two independent researchers with recourse to a third. Narrative (quantitative) and thematic qualitative syntheses were applied, followed by critical interpretive synthesis. DATA SOURCES: ProQuest, MEDLINE, Ovid EMBASE, EBSCO, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO. RESULTS: 18 of 763 studies from India or Canada were included (13 quantitative, 5 qualitative). Critical interpretive synthesis found psychological concerns similar to 'Western' women, but were framed by the common culture of Indian women in either country. Family structure, religion and community appear to protect against and cause distress in relation to the expected core role of being a wife and a mother and the male dominance in decision making. Stigma was amplified by poor knowledge about the nature of cancer. Migrant Indian women had additional problems due to language barriers. CONCLUSIONS: Indian women with breast cancer living in India and Canada experience psychological morbidities which profoundly affect their role in their family and the wider community. Culturally congruent care, including accessible communication and information, may help prevent and alleviate distressing symptoms whether in India or in a migrant community.

"So, when a woman becomes ill, the total structure of the family is affected, they can't do anything " Voices from the community on women with breast cancer in India: a qualitative focus group study.

BACKGROUND: Psychological symptoms are common in women with breast cancer and profoundly affect their role in the family and wider community, varying across cultural backgrounds. Breast cancer is becoming the most common cancer among women in India. We aimed to understand the cultural context within which Indian women with breast cancer living in India, experience psychological concerns from the perspectives of healthcare professionals, volunteers and church members. METHODS: Five focus groups were conducted in South India (clinicians (2 groups)) lay public (3 groups). A topic guide was explored: understanding of breast cancer, experiences of patients with regard to diagnosis and treatment and psychological impact. Groups were audio-recorded and verbatim transcribed. Lay groups were conducted in Malayalam with translation and back-translation. Transcripts were subjected to thematic analysis using "cultural task analysis" as a lens for analysis. RESULTS: Forty-five (oncologists (5), nurses (10), church members (16) and community volunteers working in a palliative care unit (14) participated. Three major themes psychosocial issues related to diagnosis, psychosocial impact of cancer treatment and coping with diagnosis and treatment and nine subthemes emerged from the two groups. All described psychological impact on women with breast cancer including body image, change of family role and their need for support. Family and faith were recognised as the major framework providing key support but also significant stress. Clinicians were also concerned about financial implications and issues around early cancer detection. Laypeople and nurses also commented that poor communication and lack of empathy from doctors aggravated distress. CONCLUSION: Clinical and lay communities were aware of the widespread psychological impact affecting women with breast cancer which are amplified by the patriarchal context within which they live, which extends into clinical practice. Family and faith provide a strong support structure and are a cause of distress, as core roles and expectations are challenged by this disease of womanhood.

How Physicians in South India Recognize, Assess, and Manage People with Chronic Breathlessness Syndrome: A Thematic Analysis.

OBJECTIVES: Chronic breathlessness syndrome has been defined to help clinicians actively seek, and patients legitimately present with, persistent breathlessness, and to drive services and research. However, views from low- to middle-income countries were not included. We aimed to explore the views of hospital physicians regarding chronic breathlessness syndrome, its recognition and management. METHODS: This was a secondary analysis of qualitative data collected during a service development project. Three focus groups of physicians caring for patients with chronic breathlessness in a single tertiary hospital in South India were conducted in English, audio-recorded, transcribed, and subjected to thematic analysis. RESULTS: Fifteen physicians from oncology, palliative care, cardiology, and respiratory specialties participated. Three major themes (impact, invisibility, and purpose) were generated. Findings mirrored those in high-income countries. Chronic breathlessness, as defined, was seen as prevalent, with a major impact on patients, families, and physicians. Nonpalliative care physicians described therapeutic helplessness with poor awareness and/or ability to manage breathlessness accompanied by active avoidance. This helplessness, a perceived lack of assessment tools and lack of access to palliative care contributed to the "invisibility" of chronic breathlessness. Most participants agreed with the name of chronic breathlessness syndrome. All agreed that systematic identification would foster education regarding assessment and management and support service development and research. CONCLUSIONS: Chronic breathlessness syndrome is recognized in South India but, as in higher-income countries, risks being invisible due to the lack of awareness of therapeutic interventions. A named and defined syndrome was seen as a way to improve identification and management.

'I don't talk about my distress to others; I feel that I have to suffer my problems...' Voices of Indian women with breast cancer: a qualitative interview study.

BACKGROUND: Breast cancer is the commonest form of cancer among women globally, including in India. The rising incidence in the developing world is thought to be due to increased life expectancy, urbanisation, and adoption of western lifestyles. A recent systematic review found that Indian women living in India or as immigrants in Canada experienced a range of psychological distresses both ameliorated and exacerbated by cultural issues personally, within the family, within their community, and in the context of faith, and only two of the five qualitative studies explored the experience of women with breast cancer living in India. Distress may also affect treatment compliance. AIM: The aim of the study was to explore the psychological distresses experienced by Indian women with breast cancer living in Kerala, South India, during and after treatment and to understand better what helped to relieve or increase these distresses. METHODS: In-depth interviews were conducted with 20 consenting women undergoing treatment for breast cancer. Purposive sampling was used to obtain maximum variation in sociodemographic and clinical characteristics. Interviews were verbatim transcribed, translated into English, and back-translated to Malayalam to ensure that the meaning had not been lost. English data were analysed using thematic frame work analysis and synthesised to provide a deeper understanding of the individuals' experience. RESULTS: Three major themes emerged from the data. The first major theme was 'far-reaching psychological distress'. This included anxiety, guilt, anger, and depression in response to the disease and physical side effects of treatment and issues relating to body image, especially hair loss and sexuality. The second major theme was 'getting on with life'. Women tried to make sense of the disease, by actively seeking information, the role of medical professionals, and their practical adaptations. Many found a new future and a new way to live normal. The third major theme was the 'support system' strongly based on family, friends, faith, and the community which affect them positively as well as negatively. CONCLUSION: Psychological concerns related to disease and treatment are common in Indian women with particular emphasis on body image issues associated with hair loss. Family and faith were key support systems for almost all the women, although it could also be the causes of distress.

Redefining Palliative Care-A New Consensus-Based Definition.

CONTEXT: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. OBJECTIVE: The main objective of this article is to present the research behind the new definition. METHODS: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. RESULTS: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. CONCLUSION: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span.

Prevalence of Depression in Breast Cancer Patients and its Association with their Quality of Life: A Cross-sectional Observational Study.

BACKGROUND: Breast cancer is the leading cause of cancer death among women worldwide. In India, the incidence rate of breast cancer is found to be 25.8/10,000 females. The statistics for Kerala, India, is 30.5 in urban areas and 19.8 in rural areas. Cancer and treatment-related symptoms are major stressors in patients with breast cancer undergoing treatment for the disease. Depression is a prevalent psychological symptom perceived by breast cancer patients, and it also impacts the quality of life (QOL) in these patients. We aimed to assess the prevalence of depression and its association with QOL of patients with breast cancer undergoing treatment for breast cancer. MATERIALS AND METHODS: This cross-sectional study enrolled 270 patients diagnosed with breast cancer (>18 years) and undergoing active treatment in a tertiary care center in Kerala, India. Depression was assessed using the Patient Health Questionnaire 9 and International Classification of Diseases, Tenth Edition Research guidelines. We measured the QOL and its domains using the WHOQOL-BREF. RESULTS: The average age of women in research was 53.56 years. Of the 270 patients, 21.5% had depression. Among patients with depression, 22% had moderately severe to severe depression. Patients with depression experienced overall a poor QOL. Twenty-two patients reported their overall QOL was "poor" and 34 patients reported to be dissatisfied with their health. There was an association between depression and domains of QOL. Patients with depression had lower scores in all domains when compared to those without depression. CONCLUSION: Depression and poor QOL is common among breast cancer patients.

The Process of Translation and Linguistic Validation of the Functional Assessment of Cancer Therapy-Brain Quality of Life Instrument from English to Malayalam: The Challenges Faced.

AIM: Both brain tumors and their treatments have a major negative impact on the quality of life (QoL). EORTC BN20 and Functional Assessment of Cancer Therapy-Brain (FACT-BR) are the most commonly used tools to assess QoL. The FACT-BR is a 23-item questionnaire, especially about the psychosocial aspects of QoL. This paper describes the challenges we faced during the process of translation and validation of the FACT-BR into Malayalam. METHODS: We first screened the patients to ensure their mental status was satisfactory and that they could communicate well in both languages. According to the Functional Assessment of Chronic Illness Therapy methodology, there were two forward translations from English to Malayalam by two independent translators, a reconciliation of the two forward translations, a back-translation into English, a review/finalization by a fifth translator, proofreading, and then testing on a small cohort of patients. RESULTS: The whole process of translation was fraught with small and large hurdles - from small technical issues to the gaps in sociocultural norms. The sub item BR 7, due to the lack of an exact equivalent word, had issues that persisted up to the validation phase. The postquestionnaire debriefing interviews confirmed that the translations were well understood and conceptually equivalent to the original English one. CONCLUSIONS: Translation of the FACT-BR into Malayalam nearly completely reproduced the concepts of the original English questionnaire, as proved in the subsequent validation process.

International Association for Hospice and Palliative Care Position Statement: Euthanasia and Physician-Assisted Suicide.

BACKGROUND: Reports about regulations and laws on Euthanasia and Physician Assisted Suicide (PAS) are becoming increasingly common in the media. Many groups have expressed opposition to euthanasia and PAS while those in favor argue that severely chronically ill and debilitated patients have a right to control the timing and manner of their death. Others argue that both PAS and euthanasia are ethically legitimate in rare and exceptional cases. Given that these discussions as well as the new and proposed laws and regulations may have a powerful impact on patients, caregivers, and health care providers, the International Association for Hospice and Palliative Care (IAHPC) has prepared this statement. PURPOSE: To describe the position of the IAHPC regarding Euthanasia and PAS. METHOD: The IAHPC formed a working group (WG) of seven board members and two staff officers who volunteered to participate in this process. An online search was performed using the terms "position statement", "euthanasia" "assisted suicide" "PAS" to identify existing position statements from health professional organizations. Only statements from national or pan-national associations were included. Statements from seven general medical and nursing associations and statements from seven palliative care organizations were identified. A working document including a summary of the different position statements was prepared and based on these, an initial draft was prepared. Online discussions among the members of the WG took place for a period of three months. The differences were reconciled by email discussions. The resulting draft was shared with the full board. Additional comments and suggestions were incorporated. This document represents the final version approved by the IAHPC Board of Directors. RESULT: IAHPC believes that no country or state should consider the legalization of euthanasia or PAS until it ensures universal access to palliative care services and to appropriate medications, including opioids for pain and dyspnea. CONCLUSION: In countries and states where euthanasia and/or PAS are legal, IAHPC agrees that palliative care units should not be responsible for overseeing or administering these practices. The law or policies should include provisions so that any health professional who objects must be allowed to deny participating.

Screening for psychological distress in palliative care: performance of touch screen questionnaires compared with semistructured psychiatric interview.

This study examined the criterion validity of computer-based screening tools (Distress Thermometer [DT], Brief Symptom Inventory-18 [BSI-18], and General Health Questionnaire-12 [GHQ-12]) in detecting any form of psychological distress in palliative care patients, compared with a semistructured psychiatric interview, Schedules for Clinical Assessment in Neuropsychiatry (SCAN). Patients aged 18 years or older referred to specialist palliative care services in Leeds completed the computer-based screening tools before SCAN interview by psychiatrists who were blind to screening results. SCAN interviews generated International Classification of Diseases, Tenth Revision (ICD-10) psychiatric diagnoses. Receiver operating characteristic (ROC) analysis compared the performance of screening tools with SCAN interview in identifying cases of distress. Sensitivity, specificity, positive and negative predictive values, and area under the curve (AUC) were calculated. Of the 226 eligible patients during the study period, 174 consented and 150 completed the study. Fifty-one (34%) patients satisfied ICD-10 criteria for a psychiatric diagnosis, adjustment disorder being the most common one (22%). On ROC analysis, DT, BSI-18, and GHQ-12 showed an AUC of 0.729, 0.729, and 0.755, respectively. At optimum cutoff values, sensitivity and specificity were 0.77 and 0.59 for DT, 0.78 and 0.62 for BSI-18, and 0.77 and 0.61 for GHQ-12, respectively. These data indicate that more than one-third of palliative care patients experience psychological distress. The three touch screen-based screening tools performed equally well in identifying distress compared with a psychiatric interview. The single-item DT is as good as longer screening tools, with an optimum cutoff of 5 in this population. Depressive disorders may be rarer in this population than commonly thought, in comparison to adjustment disorders.

Screening for psychological distress in palliative care: a systematic review.

Psychological distress is common in the terminally ill. It is often underdetected and undertreated and has significant impact on the individual and family. There is a growing consensus on a broader concept of psychological suffering conceptualized as "distress" in the palliative care setting. Psychological screening programs play an important role in improving detection and management of distress. National and international guidelines recommend routine screening. This systematic review summarizes the evidence for screening for psychological distress in a palliative care setting. The review includes studies that compare screening questionnaires against a gold standard criterion of semistructured or structured psychiatric interview. Eight studies were identified which examined the performance of 10 screening questionnaires, ranging from single items to multidimensional questionnaires with up to 33 items. The performances of these questionnaires are described in terms of their sensitivity, specificity, and positive and negative predictive values. There are very few studies that examine the validity of questionnaires against credible criteria such as psychiatric interview and most studies have so far focused on depression. Unidimensional scales appear to perform equally well compared to the longer versions. This review summarizes the evidence, the quality of this evidence, and future challenges to improve identification and management of distress in palliative care.

New research in psychooncology.

PURPOSE OF REVIEW: The objectives of this review are to identify new studies in the area of psychooncology, and ascertain the directions current studies are taking. RECENT FINDINGS: New studies relate to the measurement of distress, which is being strongly proposed as the sixth vital sign in the assessment of patients with cancer. Attempts to use different scales and instruments to screen for depression and psychiatric morbidity in patients with cancer have also been made. Posttraumatic stress disorder, fatigue, somatization and cognitive dysfunctions have been studied. The field of psychoneuroimmunology has further strengthened our understanding of the impact of stress on immune function. Cancer survivors and their coping methods, sexual health, and suicidality have been the focus of research in the last year. Quality of life of caregivers has also been studied, as has spirituality. Cognitive behaviour group therapy in relatives of patients with cancer appears to be helpful. SUMMARY: New studies in psychooncology have focused on the relationship between psychosocial factors and cancer, such as detection of distress and psychiatric morbidity, intervention, coping methods used by survivors, and psychoneuroimmunology. Research in psychooncology is an exciting area despite numerous challenges.

Palliative care in India: successes and limitations.

Palliative care in India is in a relatively early stage of development and consequently faces numerous problems. The extent of problems relating to the lack of such care is not well described for cancer or nonmalignant diseases. Opioid availability is seriously limited. Many inexpensive drugs are not readily available and some very expensive drugs are often prescribed, adding to the patients' burden. Enormous psychosocial needs often are neglected in busy clinics. The government's palliative care policy has not been implemented. There are clear needs for improvement in multiple areas that must be addressed as new services develop. A system based on outpatient care has proven cost-effective, empowering families to care for patients at home. Whenever possible, inpatient facility and home visits should be available for those who need them. Some measures of quality assurance should develop concurrent with growth of the palliative care movement. Successes and problems in the development of palliative care in India are discussed.