"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.

Developing a Screening Tool for Serious Health-related Suffering for Low- and Middle-Income Countries - Phase-1: Domain Identification and Item Generation.

Objectives: The Lancet Commission on Global Access to Palliative Care and Pain Relief reported significant levels of health-related suffering globally, with the highest incidence in the low- and middle-income countries. The report describes suffering as health-related when it is associated with illness or injury of any kind and suffering as serious when it cannot be relieved without professional intervention and when it compromises physical, social, spiritual, and/or emotional functioning. This paper describes the preliminary development phase of a tool for screening Serious Health-related Suffering (SHS) at individual patient level, suitable to the healthcare settings in India. The study was conducted by the National Cancer Grid-India, with support from the Indian Association of Palliative Care. Materials and Methods: Domain identification and item generation were conducted according to the recommendations for tool development by the American Psychological Association and World Health Organisation quality of life instrument. The consensus for domain questions and associated items was achieved using Delphi, nominal group technique, expert review, and polling. Results: The Phase-1 study for developing the screening tool for SHS contextualised to resource-limited settings generated a bilevel questionnaire. The initial level assesses and scores the physical, emotional, social, spiritual, and financial domains of health-related suffering. The next level assesses seriousness, through functional limitation and patient's preference. Conclusion: The generation of domains, items, and screening questions for health-related suffering and its seriousness completes the preliminary phase of developing the SHS screening tool applicable to a resource-limited healthcare setting. Field testing of the tool is being conducted as Phase-2 of this study, to validate it in clinical settings.

'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.

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.

Responding to Palliative Care Training Needs in the Coronavirus Disease 2019 Era: The Context and Process of Developing and Disseminating Training Resources and Guidance for Low- and Middle-Income Countries from Kerala, South India.

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.

Psychosocial Aspects of COVID-19 in the Context of Palliative Care - A Quick Review.

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.

Systematic literature review: xerostomia in advanced cancer patients.

PURPOSE: Dry mouth (xerostomia) is one of the commonest symptoms in cancer patients and can adversely affect quality of life. The aim of this review was to determine the effectiveness of pharmacological and non-pharmacological interventions in treating xerostomia in adult advanced cancer patients. METHODS: The literature search was performed in February 2014 using databases including EMBASE, MEDLINE, CINAHL, BNI and Cochrane library. The search was carried out using standard MeSH terms and was limited to adult population and English language. Studies investigating xerostomia secondary to head and neck cancer treatment and autoimmune disease were excluded. Titles and abstracts were screened and reviewed for eligibility. Only studies involving primary research were included in the analysis. RESULTS: Six studies met the eligibility criteria for review: three randomized controlled trials and three prospective studies. The quality assessment and reporting was performed using PRISMA, Jadad and STROBE. These studies compared acupuncture, pilocarpine, Saliva Orthana and chewing gum with each other or with placebo. All interventions were considered effective in treating xerostomia. However, effectiveness versus placebo could not be demonstrated for Saliva Orthana. Meta-analysis could not be performed due to heterogeneity of the study type and intervention. CONCLUSION: Limited published data exists reporting the effectiveness of measures in the treatment of xerostomia in cancer patients. Based on primary research of low quality, firm conclusions cannot be drawn. However, pilocarpine, artificial saliva, chewing gum and acupuncture can be tried based on the available data. This highlights the explicit need to improve our evidence base. Properly constructed randomized controlled trials demonstrating effectiveness of pharmacological and non-pharmacological interventions for dry mouth are required.

Views and experiences of opioid access amongst palliative care providers and public representatives in a low-resource setting: A qualitative interview study.

Opioids (e.g. morphine) are affordable, effective interventions for cancer-related pain. However, equity of access to this key medication remains a global challenge, particularly in low- and middle-income countries. We aimed to explore views of palliative care providers and public-representatives about opioid analgesia access in two States in India. We conducted a qualitative study using semi-structured interviews. Transcribed audio-recordings were subjected to thematic analysis using a Framework Approach. Palliative care providers and public-representatives were purposively sampled from services reporting consistent opioid availability and prescribing (≥4kg per annum) from Karnataka and Kerala. Twenty participants (doctors (10), nurses (4), pharmacists (2), service managers (2) and public-representatives (2) were interviewed. Three themes were identified: 1) Attitudes and awareness: opioid treatments are perceived as end-of-life (last days/weeks) interventions; fears of addiction and misunderstanding of pain management goals limit access. 2) Expected and unexpected inequities: patients/carers from lower socioeconomic strata accept doctor recommendations if opioids are affordable, more educated patients/families have reservations about opioids, delay access and perceive expensive medicines as better. Non-palliative care specialist doctors have negative entrenched views and require specialist training. 3) Experiential learning-positive experiences can positively alter attitudes (e.g., participants in Kerala report improved attitudes, awareness and understanding influenced by exposure and community awareness, but experience can also reinforce perceptions as end-of-life care. Entrenched negative views are reinforced by poor experiences while positive experiences improve attitudes. To promote access, opioid prescribing must be needs-based rather than prognosis-based. Addressing the lack of training for non-palliative care workforce would help overcome a major barrier.

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.

Respiratory problems in low-resource settings.

PURPOSE OF REVIEW: Chronic breathlessness is common in patients with advanced illness who require palliative care. Achieving good symptom control can be challenging. More people with advanced illness live in low and middle income than in high-income countries, but they are much less likely to receive palliative care. Most of the emerging evidence for the palliative management of chronic breathlessness is from high-income countries. This review explores the context of chronic breathlessness in low-income settings, how evidence for control of chronic breathlessness might relate to these settings and where further work should be focused. RECENT FINDINGS: Systems for control of noncommunicable diseases (NCDs) in these low-income contexts are poorly developed and health services are often overwhelmed with high levels both of NCD and communicable disease. Multidisciplinary and holistic approaches to disease management are often lacking in these settings. Developing an integrated primary care approach to NCD management is increasingly recognized as a key strategy and this should include palliative care. Most evidence-based approaches to the control of chronic breathlessness could be adapted for use in these contexts SUMMARY: Hand held fans, breathing techniques, graded exercise and use of low-dose morphine can all be used in low-income settings particularly in the context of holistic care. Research is needed into the most effective ways of implementing such interventions and palliative care needs to be promoted as a fundamental aspect of NCD management.

What determines duration of palliative care before death for patients with advanced disease? A retrospective cohort study of community and hospital palliative care provision in a large UK city.

OBJECTIVE: For patients with advanced cancer, several randomised controlled trials have shown that access to palliative care at least 6 months before death can improve symptoms, reduce unplanned hospital admissions, minimise aggressive cancer treatments and enable patients to make choices about their end-of-life care, including exercising the choice to die at home. This study determines in a UK population the duration of palliative care before death and explores influencing factors. DESIGN: This retrospective cohort study analysed referrals to three specialist palliative care services; a hospital-based inpatient palliative care team, and two community-based services (hospices). For each patient referred to any of the above services we identified the date of first referral to that team and calculated the median interval between first referral and death. We also calculated how referral time varied by age, sex, diagnosis and type of palliative care service. PARTICIPANTS: 4650 patients referred to specialist palliative care services in Leeds UK between April 2012 and March 2014. RESULTS: Median age of the sample was 75 years. 3903 (84.0%) patients had a diagnosis of cancer. Age, diagnosis and place of referral were significant predictors of duration of palliative care before death. Age was independently associated (J=2 672 078, z=-392046.14, r=0.01) with duration of palliative care regardless of diagnosis. Patients over 75 years have 29 fewer days of palliative care than patients under 50. Patients with non-cancer diagnoses have 13 fewer days of palliative care than patients with cancer. Additionally, patients referred to hospital palliative care receive 24.5 fewer days palliative care than those referred to community palliative care services. CONCLUSIONS: The current timing of referral to palliative care may limit the benefits to patients in terms of improvements in end-of-life care, particularly for older patients and patients with conditions other than cancer.