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Majority of people in low- and middle-income countries with mental illness do not receive healthcare, leading to chronicity, suffering and increased costs of care. This study estimated the out-of-pocket expenditure (OOPE), catastrophic health expenditure (CHE), and poverty impact due to mental illness in India. Data was acquired from the 76th round data of the National Sample Survey (NSS) on the theme ‘Persons with Disabilities in India Survey’, July–December 2018. Data of 6,679 persons who reported mental illness during the survey was included for analysis. OOPE, CHE, poverty impact and state differentials of healthcare expenditure on mental illness were analysed using standard methods. In total, 18.1% of the household’s monthly consumption expenditure was spent on healthcare on mental illness. About 59.5% and 32.5% of the households were exposed to CHE based on 10% and 20% thresholds, respectively. About 20.7% of the households were forced to become poor from non-poor due to treatment care expenditure on mental illness. Our study suggests the critical need to accelerate on various measures for early diagnosis and management of mental health issues along with financial risk protection for reducing financial impact of healthcare expenditure on mental illness among households in India.

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.

Background: Heart failure (HF) is a multi-morbid chronic condition, which adversely affects the quality of life of the affected individual. Engaging the patient and their caregivers in self-care is known to reduce mortality, rehospitalisation and improve quality of life among HF patients. The PACT-HF trial will answer whether clinical benefits in terms of mortality and hospitalisation outcomes can be demonstrated by using a pragmatic design to explore the specific effects of physical activity, and cognitive behavioural therapy in HF patients in India. Methods: We will conduct a 2 × 2 factorial, randomized, open-label trial, which aims to see if rehabilitation strategies of structured physical activity training and cognitive behavioural therapy for depression and self-management reduce the risk of repeat hospitalisation and deaths in HF patients in India. Patients will be randomised to (1) physical activity + usual care (2) cognitive behaviour therapy + usual care, (3) physical activity + cognitive behaviour therapy + usual care, and (4) usual care at 1:1:1:1 ratio. Time to mortality will be the primary outcome. A composite of mortality and hospitalisation for HF will be the main secondary outcome. Additional secondary outcomes will include ‘days alive and out of hospital’, cumulative hospitalisation, quality of life, Minnesota Living with Heart Failure questionnaire score, depression score, six minutes walking distance, handgrip strength, and adherence to medicines and lifestyle. The effects of intervention on the primary outcome will be estimated from Cox proportional hazard models. For the continuous secondary outcome variables, differences between randomised groups will be estimated from linear mixed models or generalised estimating equations (GEE) as appropriate. Discussion: PACT-HF is designed to provide reliable evidence about the balance of benefits and risks conferred by physical activity and cognitive behavioural therapy-based cardiac rehabilitation for those with HF, irrespective of their initial disease severity.

The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link. The notion of ‘mental health literacy’ has been proposed as a way of improving mental health problem recognition, service utilisation and reducing stigma. Yet the idea embodies a number of medical-model assumptions which are often at odds with diverse communities’ spiritual traditions and local belief systems. Twenty participants were recruited to this study consisting of mental health service users (N = 7), family carers (N = 8) and community members (N = 5) in a temple town in Kerala, South India participated in semi structured interviews exploring the variety of beliefs and practices relating to mental health. Our findings indicate that the issue may be better understood in terms of multiple mental health literacies which people deploy in different circumstances. Even those sceptical of traditional and spiritual approaches are knowledgeable about them, and the traditional practices themselves often involve detailed regimes of activities aimed at effecting an improvement in the person’s mood or condition. Therefore, we argue it is appropriate to consider mental health literacy not as a unitary universal phenomenon but instead as a mosaic of different literacies which may be deployed in different settings and in line with different experiences and which may operate in synergy with each other to enable treatment but also facilitate a sense of meaning and purpose in life.

Background: For any research, it is important to ensure that an establish instrument conforms to the culture of the population in focus. The objectives of this study include translation of the Parental Stressor Scale: Pediatric Intensive Care Unit (PSS: PICU) questionnaire into Malayalam and the analysis of its psychometric properties. Subjects and Methods: This was a cross-sectional study of 201 parents of children admitted to the PICU. The PSS: PICU questionnaire was first translated into Malayalam language using the standard “Forward-Backward” procedure. Following consent, parents completed the demographic sheet and the Malayalam version of PSS: PICU scale within 30 min. Results: Analysis showed good psychometric properties for the Malayalam PSS: PICU questionnaire when compared to the original English version. The principal component factor analysis with Varimax rotation was used to assess the validity and was found to favor the conceptual dimensions of the original English questionnaire. The Cronbach's alpha coefficient used to assess reliability was 0.865 for the entire scale reflecting good internal consistency. Conclusion: The PSS: PICU questionnaire was translated to Malayalam and the psychometric properties of the Malayalam version were found to be adequate, albeit requires further exploration before extensive use.

BackgroundBreast 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.AimThe 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.MethodsIn-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.ResultsThree 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.ConclusionPsychological 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.

Introduction: The Coronavirus Disease 2019 (COVID-19) pandemic and its socio-economic consequences have had a significant impact on mental health. A quantifiable data regarding increase of mental health problems as a result of the pandemic is required to take necessary steps in tackling the issue. Aim: To estimate the prevalence of depression, perceived stress and its socio-demographic correlates among general population of South India during COVID-19. Materials and Methods: This cross-sectional survey conducted from 25th August 2021 to 25th October 2021 among the general population of South India during COVID-19. A total of 600 subjects were enrolled into the study. Study subjects included people of either sex between 20-50 years of age who were able to read and understand English and with access to internet. Subjects responded to a questionnaire packet of Patient Health Questionnaire-9 (PHQ-9), Perceived Stress Scale 10 (PSS-10) and a proforma for socio-demographic data. Data was analyzed using GNU PSPP version 1. One-way Analysis of Variance (ANOVA) and independent t test were used to assess associations. A value of p-value

Background & objectives: The healthcare system across the world has been overburdened due to the COVID-19 pandemic impacting healthcare workers (HCWs) in different ways. The present study provides an insight into the psychosocial challenges faced by the HCWs related to their work, family and personal well-being and the associated stigmas. Additionally, the coping mechanisms adopted by them and their perceptions on the interventions to address these challenges were also explored. Methods: A qualitative study was conducted between September and December 2020 through in-depth telephonic interviews using an interview guide among 111 HCWs who were involved in COVID-19 management across 10 States in India. Results: HCWs report major changes in work-life environment that included excessive workload with erratic timings accentuated with the extended duration of inconvenient personal protection equipment usage, periods of quarantine and long durations of separation from family. Family-related issues were manifold; the main challenge being separated from family, the challenge of caregiving, especially for females with infants and children, and fears around infecting family. Stigma from the community and peers fuelled by the fear of infection was manifested through avoidance and rejection. Coping strategies included peer, family support and the positive experiences manifested as appreciation and recognition for their contribution during the pandemic. Interpretation & conclusions: The study demonstrates the psychological burden of HCWs engaged with COVID-19 care services. The study findings point to need-based psychosocial interventions at the organizational, societal and individual levels. This includes a conducive working environment involving periodic evaluation of the HCW problems, rotation of workforce by engaging more staff, debunking of false information, community and HCW involvement in COVID sensitization to allay fears and prevent stigma associated with COVID-19 infection/transmission and finally need-based psychological support for them and their families.

Background COVID-19 has inundated the entire world disrupting the lives of millions of people. The pandemic has stressed the healthcare system of India impacting the psychological status and functioning of health care workers. The aim of this study is to determine the burnout levels and factors associated with the risk of psychological distress among healthcare workers (HCW) engaged in the management of COVID 19 in India. Methods A cross-sectional study was conducted from 1 September 2020 to 30 November 2020 by telephonic interviews using a web-based Google form. Health facilities and community centres from 12 cities located in 10 states were selected for data collection. Data on socio-demographic and occupation-related variables like age, sex, type of family, income, type of occupation, hours of work and income were obtained was obtained from 967 participants, including doctors, nurses, ambulance drivers, emergency response teams, lab personnel, and others directly involved in COVID 19 patient care. Levels of psychological distress was assessed by the General health Questionnaire -GHQ-5 and levels of burnout was assessed using the ICMR-NIOH Burnout questionnaire. Multivariable logistic regression analysis was performed to identify factors associated with the risk of psychological distress. The third quartile values of the three subscales of burnout viz EE, DP and PA were used to identify burnout profiles of the healthcare workers. Results Overall, 52.9% of the participants had the risk of psychological distress that needed further evaluation. Risk of psychological distress was significantly associated with longer hours of work (≥ 8 hours a day) (AOR = 2.38, 95% CI(1.66–3.41), income≥20000(AOR = 1.74, 95% CI, (1.16–2.6); screening of COVID-19 patients (AOR = 1.63 95% CI (1.09–2.46), contact tracing (AOR = 2.05, 95% CI (1.1–3.81), High Emotional exhaustion score (EE ≥16) (AOR = 4.41 95% CI (3.14–6.28) and High Depersonalisation score (DP≥7) (AOR = 1.79, 95% CI (1.28–2.51)). About 4.7% of the HCWs were overextended (EE>18); 6.5% were disengaged (DP>8) and 9.7% HCWs were showing signs of burnout (high on all three dimensions). Conclusion The study has identified key factors that could have been likely triggers for psychological distress among healthcare workers who were engaged in management of COVID cases in India. The study also demonstrates the use of GHQ-5 and ICMR-NIOH Burnout questionnaire as important tools to identify persons at risk of psychological distress and occurrence of burnout symptoms respectively. The findings provide useful guide to planning interventions to mitigate mental health problems among HCW in future epidemic/pandemic scenarios in the country.

Background: The concept of stigma has been widely used to understand patterns of discrimination and negative ideas surrounding people with mental health problems, yet we know little of the specific nuances of how this might operate beyond the ‘Global North’. Aim: This paper aims to explore the notion of stigma in an Indian context by considering the lived experience of patients, carers and community members. Methods: A sample of 204 participants, representing mental health patients, informal carers and community members was recruited from urban and rural areas in Kerala, India. Participants took part in interviews where they were encouraged to talk about their experiences of mental ill health, attitudes towards these problems, barriers encountered and sources of support. Results: Experiences akin to the experience of stigma in Europe and the United States were elicited but there were important local dimensions specific to the Indian context. The difficulties faced by people with diagnoses of mental disorders in finding marriage partners was seen as an important problem, leading to marriage proposals being refused in some cases, and secrecy on the part of those with mental health problems. Rather than the ‘self-stigma’ identified in the US, participants were more likely to see this as a collective problem in that it could reflect badly on the family group as a whole rather than just the sufferer. Conclusions: In the Indian context, the idioms of stigma emphasised impairments in marriage eligibility and the implications for the family group rather than just the self.

Background Integrated palliative care (PC) has an important role in supporting those affected by the global COVID 19 pandemic. Communication and goals of care, symptom control and holistic support is needed particularly for patients and families living with multi-morbidity and populations in isolation and lockdown. Equipping health care workers (HCW) with core PC competencies is essential and often lacking. Building on models of integrated PC and effective response to humanitarian emergencies in Kerala, we developed and disseminated a Palliative Care in COVID-19 Resource Toolkit for LMICs comprising an e-book, webinars and ECHO platform interactive sessions for HCW. Objective To evaluate the impact of the Resource Toolkit on the knowledge and confidence levels of HCWs. Methods Participants registered for training package completed a pre and post course questionnaire with eighty percent attendance along with giving narrative feedback. Data collected from June to September 2020. Results A total of 388 participants from 8 countries including 24 Indian states; 27% male; median age 33 (20–65); 46% nurses & 27% doctors. There is statistically significant improvement in all factors assessed from pretest to post test. (p=0.000) ) Mean difference in knowledge & confidence in communication, goal setting, physical symptoms management, distress management and EOLC are as follows: 2.57 CI 95% ; (2.21 to 2.93), 2.34 CI 95%; (1.99 to 2.68), 2.72 CI 95%; (2.36 to 3.07), 2.55 CI 95%; (2.20 to 2.90), 2.42 CI 95%; (2.05 to 2.79), 2.38 CI 95%; (2.01 to 2.75), 2.88 CI 95%; (2.51 to 3.24),2.63 CI 95%; (2.27 to 2.99), 3.01 CI 95%; (2.65 to 3.38),2.76 CI 95% (2.39 to 3.13). Conclusion The Toolkit when combined with online interaction can support the integration of PC competencies in health care workers many of whom have no previous exposure to PC. Narrative feedback also supported the place of a safe forum to share. Further study is planned to assess the educational impact on practice. Funding Self-funded.

Background: The present paper describes the key challenges and opportunities of mixed method telephonic data collection for mental health research using field notes and the experiences of the investigators in a multicenter study in ten sites of India. The study was conducted in public and private hospitals to understand the mental health status, social stigma and coping strategies of different healthcare personnel during the COVID-19 pandemic in India.Methods: Qualitative and quantitative interviews were conducted telephonically. The experiences of data collection were noted as a field notes/diary by the data collectors and principal investigators.Results: The interviewers reported challenges such as network issues, lack of transfer of visual cues and sensitive content of data. Although the telephonic interviews present various challenges in mixed method data collection, it can be used as an alternative to face-to-face data collection using available technology.Conclusions: It is important that the investigators are well trained keeping these challenges in mind so that their capacity is built to deal with these challenges and good quality data is obtained.

Background: The International Association for Hospice and Palliative Care (IAHPC) 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. Aim: The objective of this paper 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 one, 38 PC experts evaluated the components of the World Health Organization (WHO) definition and suggested new/revised ones. In phase two, 412 IAHPC members in 88 countries expressed their level of agreement with the suggested components. In phase three, using results from phase two, the expert panel developed the definition. Results: The consensus-based definition is “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 palliative care. Conclusions: 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.

Background: Palliative care has an important role to play in the global coronavirus disease 2019 (COVID-19) pandemic. It is integrated and is a key component in the governmental and community structures and services in Kerala, in India. Palliative care in the state has grown to be a viable model recognized in global palliative care and public health scene. The community network of palliative care, especially the volunteers linking with clinical teams, is a strong force for advocacy, relief support including provision of emergency medications, and clinical care. Objective: To develop a palliative care resource tool kit for holistic care of patients affected with COVID-19 and to support the health-care workers looking after them to enable palliative care integration with COVID-I9 management. Methods: The Kerala State government included senior palliative care advisors in the COVID-19 task force and 22 palliative care professionals formed a virtual task force named Palli COVID Kerala as an immediate response to develop recommendations. Results: Developed a palliative care in COVID-19 resource toolkit which includes an e-book with palliative care recommendations, online training opportunities, short webinars and voice over power point presentations. Conclusion: Integrated Palliative care should be an essential part of any response to a humanitarian crisis. The e resource tool kit can be adapted for use in other low- and middle-income countries.

Gender is related not only to biological differences but also to how we are perceived and expected to think and act as women and men because of the way society is organized. Gender is one of the most important biological and social determinant that influences mental health in all its domains, epidemiology, understanding the nature and course of illness, experiences of illness and suffering, access to care treatment resources and living with and after illness in the community. The implication of understanding the link between gender and mental health paves way for improving, improvising and bringing out innovative options in all aspects of mental health care. The provision of care in the community cannot be exclusive of such factors, limiting only to the medical and traditional care-cure model. Mehac Foundation not for profit organization working in and with the community in Kerala, India, outlines its experiences with mental health and illness, indicating some important developments and components of the model, with a special focus on gender.

BackgroundBreast 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.AimTo improve understanding of psychological symptoms among Indian women with breast cancer.DesignThis 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 sourcesProQuest, MEDLINE, Ovid EMBASE, EBSCO, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO.Results18 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.ConclusionsIndian 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.

Background Psychological symptoms are common in women diagnosed with breast cancer. The cancer care experiences of women varies across diverse cultural backgrounds. Given that breast cancer is becoming the most common cancer among women in India, recognition of psychological distress during treatment is important to enable the physician to offer support that is culturally sensitive. Aims To determine the psychological concerns of Indian women in relation to breast cancer treatment. Method Medline, Embase, CINAHL and PsychInfo were searched (to February 2017) using terms relating to Indian women with breast cancer and psychological concerns. The EBSCO host discovery science was searched for papers from Indian journals inaccessible from other databases. Two reviewers were involved in all stages of study selection against inclusion criteria. Any discrepancy was finalised after discussion with a third researcher. Included papers were appraised for their quality and data extracted using a standard proforma. Results Out of 550 titles, 17 studies met the inclusion criteria. 13 were observational and four were qualitative studies. The observational studies found five psychological outcomes related to breast cancer and its treatment; anxiety/depression, quality of life, concerns and coping, body image and stigma and information needs. Thematic synthesis of qualitative papers revealed four major themes; cultural context of disease experiences, information seeking, role of women and women’s individual response to disease. Overall, a major cultural impact of Indian family life and the role of women, the role of religion and a particular impact of hair loss for these women within these contexts was seen in women living in India and elsewhere in the world. Conclusion This literature review highlights the cultural impact on the experience of Indian women with breast cancer living in India and around the world; culture travels. This is important for clinicians looking after patients from diverse cultural backgrounds.

Background Care conferences are team meetings held for every patient receiving health care in hospital or other care facility. It involves the patient, carers and family and it facilitates sharing information and working together to meet the person’s needs. Successful communication is an important component of the process which results in appropriate decisions being made in relation to available care resources. Integrating early palliative care with cancer treatment improves quality of life and survival. Effective communication among physicians, patients and their loved ones is crucial to end-of-life, hospice and palliative care discussions. The palliative care team in our hospital has been actively involved in the care conferences organised by various specialities. The aim of this study was to evaluate the role of the specialist palliative care team in care conferences held in a tertiary referral hospital Method A retrospective case note analysis was completed on patients who had care conferences conducted while they were inpatients in the hospital over a period of 6 months. Results The team were involved in advanced care planning of fourteen patients during this period. The median age was 44; the youngest patient was of 6 months of age. Our team was involved in discussion around goals of care and discharge planning. The median duration from admission to care conference was 17 days while the duration to discharge was 3.5 days. The outcome of meeting varied from agreeing for best supportive care, decisions about not attempting resuscitation, early shift out from intensive care unit and facilitating discharge home with involvement of home care team. Conclusion Specialist Palliative care team has an important role in initiating and leading care conferences to enable better communication between specialities, provide quality care to patients and families and prevent futile medical treatment at end of life.

Background: Common childhood psychiatric problems like attention deficit hyperkinetic disorder (ADHD), Pervasive developmental disorder (PDD) and learning disability (LD) often co-exists with each other and form a constellation of behavioural manifestations that require extra attention from the caregivers. Having a differentially-abled child is challenging and most parents have to learn to restructure their lives around that of the child. There is a difference in the attitudes of both the parents as far as parenting a disabled child is concerned. Mothers often shoulder the primary caregiving role however the psychological costs borne by women go unrecognized. The study aims to assess the care giver burden (BOC) and perceived stress (PS) and quality of life (QOL) in mothers of children with ADHD, PDD and LD.Methods: It was a cross-sectional study with 336 child mother pairs. The mothers were asked to rate their burden and stress symptoms on the perceived stress scale and Burden of care scale. The mothers were also asked to rate their quality of life on the quality of life scale.Results: The mean PS score was highest in the PDD group. The mean BOC was lowest in the LD group. The QOL score was highest in the LD group. There is statistically significant difference in the PS, BOC and QOL scores among the three groups.Conclusions: There is a hidden lacuna of psychological stress in mothers of children with common psychiatric problems. The study also establishes that these mothers have poorer quality of life. It is necessary to address these psychological issues of the mother at every visit and equip them with coping strategies so that they can look after both themselves and their special needs child.

In a resource-poor country like India, where the health-care systems are difficult to access, overburdened, and unaffordable to many, the impact of the coronavirus disease 2019 (COVID-19) pandemic can be devastating. The increased burden of serious health-related suffering can impact the well-being of health-care workers, patients, and their families alike. The elderly, the frail, the vulnerable, and those with multiple comorbidities are disproportionately affected. Palliative care, with its comprehensive and inclusive approach, has much to offer in terms of alleviating the suffering, particularly those caused by the distressing physical and psycho-socio-spiritual symptoms, the complex medical decision-making, end-of-life care issues, and grief and bereavement, and needs to be integrated into the pathway of care provision in COVID-19. Psychosocial issues contribute to and amplify suffering and are often underestimated and undertreated and not accessible to many. Empowering frontline professionals in the core concepts of psychosocial support and palliative care thus becomes an absolute necessity. This quick review was done by a group of palliative care physicians and mental health experts from India to develop recommendations for physical and psychosocial care in the context of COVID-19. This review was done as part of that process and highlights the role and challenges of the psychosocial domain of palliative care in the context of COVID-19 situation in India.

India is experiencing an epidemiological transition with non-communicable and chronic diseases becoming the leading causes of death. There are at least 1.5–2 million cancer cases; two-thirds of them are in an incurable stage of disease. The adult HIV prevalence is approximately 2.5 million. The development of palliative care has been patchy. Vast majority of India does not have access to palliative care but in a state like Kerala, effective coverage and involvement led to designation of centers such as Institute of Palliative Medicine (IPM), Calicut and Trivandrum Institute of Palliative Sciences (TIPS), Pallium India as the Collaborating Centers of WHO for Community Participation in Palliative Care and for Training and Policy on Access to Pain Relief, respectively. A lack of health policy, lack of training and awareness, and opioid availability are barriers to palliative care. India does not have a national policy on palliative care. The National Cancer and AIDS Control Programme mentions palliat...

The objectives of this review are to identify new studies in the area of psychooncology, and ascertain the directions current studies are taking.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.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 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.

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.

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.

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.

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.

It is estimated that around 2.5 million people suffer from cancer at any given time in India. Almost 80% of patients reach hospitals in advanced stages of the disease. The majority needs palliative care, whereas only a minority of the needy receives this input. The challenge in the developing world is to evolve a culturally and socio-economically appropriate and acceptable system of care, while addressing psychosocial issues along with long-term care needs, that is accessible to the majority of those who need it. The evolution of a specific service for psychosocial care for persons and families started in the 1970s, initial work focusing mainly on research. Contributions from persons in varied topics have been outlined. Only a few organized clinical services function as part of large tertiary hospitals, oncology centers or palliative care units. The emerging trend in Northern Kerala is based on an integrated service linking training, clinical services and research activities which are linked at several levels, involving volunteers in the community. Future hopes lie in developing core groups; establishing specific clinical services liaising with cancer care teams, large scale research projects and discussion with policy makers to develop guidelines at national level.