Quality of life, perceived stress and caregiver burden in mothers of children with childhood psychiatric disorders in Kerala, India

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

‘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, urbanization 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, 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 socio-demographic 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 analyzed using thematic frame work analysis and synthesized 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 is 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 could also be causes of distress

“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

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 participatin

Challenges and opportunities in mixed method data collection on mental health issues of health care workers during COVID-19 pandemic in India

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

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

Factors associated with stigma and manifestations experienced by Indian health care workers involved in COVID-19 management in India: A qualitative study

Healthcare personnel who deal with COVID-19 experience stigma. There is a lack of national-level representative qualitative data to study COVID-19-related stigma among healthcare workers in India. The present study explores factors associated with stigma and manifestations experienced by Indian healthcare workers involved in COVID-19 management. We conducted in-depth interviews across 10 centres in India, which were analysed using NVivo software version 12. Thematic and sentiment analysis was performed to gain deep insights into the complex phenomenon by categorising the qualitative data into meaningful and related categories. Healthcare workers (HCW) usually addressed the stigma they encountered when doing their COVID duties under the superordinate theme of stigma. Among them, 77.42% said they had been stigmatised in some way. Analyses revealed seven interrelated themes surrounding stigma among healthcare workers. It can be seen that the majority of the stigma and coping sentiments fall into the mixed category, followed by the negative sentiment category. This study contributes to our understanding of stigma and discrimination in low- and middle-income settings. Our data show that the emergence of fear of the virus has quickly turned into a stigma against healthcare workers

Redefining Palliative CaredA 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