Indian Journal of Palliative Care
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Background: Cancer-related fatigue (CRF) is one of the most frequent and prevalent symptoms expressed by cancer patients and cancer survivors. It is a multifactorial phenomenon that causes a direct detrimental impact on quality of life. Objectives: This systematic review aims to identify different clinical evaluation scales and interventions available for fatigue associated with cancer. Materials and Methods: A methodology of the systematic literature review was carried out. Two separate databases PubMed and Google Scholar searches were performed using different MeSH terms. Results: A total of 2611 research articles were screened and identified 10 unidimensional scales (four with one item scales and six with numerous item scales) and 13 multidimensional scales which are available for the screening and clinical evaluation of fatigue. Reviews have also revealed non-pharmacological interventions such as exercise, complementary therapies, nutritional and psychoeducational interventions, sleep therapy, energy therapy, bright white light, restorative therapies upcoming anthroposophical medicine, and various pharmacological agents effective in managing CRF. Conclusion: Clinical evaluation of fatigue and its management is crucial for improving the quality of life. Yet, more rigorous research studies with higher statistical power need to be conducted on these interventions to generate adequate evidences for managing the CRF.

Objectives: According to WHO, Palliative care is an essential component of a comprehensive package of care for people living with HIV/AIDS. Lack of palliative care results in untreated symptoms that hamper an individual’s ability to perform daily activities. The study aimed to explore the perceived Palliative care needs of People Living With HIV/AIDS and the association between socio- demographic profile with Palliative care needs. Materials and Methods: It was a mixed method study conducted over 2 months in November and December 2020 at Link ART OPD of Urban Health Training Centre in Mumbai. Out of 120 registered patients,15 patients were selected for in-depth interview by purposive sampling. The remaining 105 patients were selected for quantitative part of the study by complete enumeration method. For Qualitative part, Thematic analysis of the transcripts was done. Data were coded using Microsoft word comment feature. Themes and categories were drawn from it. For Quantitative part, Data analysis was done using SPSS version 22. Chi- square test was applied to find out the association between socio- demographic profile & palliative care needs. P value < 0.05 was considered statistically significant. Results: The major themes identified were poor attitude towards the disease, lack of support and role of counselling. The common palliative care needs identified were need for financial assistance, family support and psychological support. Conclusions: Palliative care should be introduced early in the care process by a team of providers who is aware of the patient’s history and requirements.

Objectives: The purpose of this study was to evaluate the feasibility of a home-based palliative care program delivered by community health workers (CHW) in rural areas outside of Kolkata, India. The specific aims were to assess CHWs’ ability to implement the intervention protocol and maintain records of care, to characterize patient problems and CHW activities to assist patients, and to assess change in patient pain scores over the course of the intervention. Materials and Methods: Four CHWs were hired to facilitate delivery of home-based palliative care services. CHWs were trained using the Worldwide Hospice and Palliative Care Alliance’s Palliative Care Toolkit. CHWs provided care for patients for 3-months, making regular home visits to monitor health, making and implementing care plans, and referring patients back to the cancer center team for serious problems. Results: Eleven patients enrolled in the intervention, with ten of these patients participating in the intervention and one patient passing away before starting the intervention. All ten participants reported physical pain, for which CHWs commonly recommended additional or higher dose medication and/or instructed patients how to take medication properly. For two patients, pain levels decreased between baseline and end of study, while pain scores did not decrease for the remaining patients. Other symptoms for which CHWs provided care included gastro-intestinal, bleeding, and respiratory problems. Conclusion: The study findings suggest that utilization of CHWs to provide palliative care in low-resource settings may be a feasible approach for expanding access to palliative care. CHWs were able to carry out the study visit protocol and assess and document patient problems and their activities to assist. They were also able to alleviate many common problems patients experienced with simple suggestions or referrals. However, most patients did not see a decrease in pain levels and more emphasis was needed on the emotional aspects of palliative care, and so CHWs may require additional training on provision of pain management and emotional support services.

Objectives: Palliative care units under Local Self-Government Institutions (LSGIs) are increasing in number in the state of Kerala, India, since the announcement of the Pain and Palliative Care Policy, 2008. Whether these units are functioning with a view to materialise the long-term objectives, following the guidelines stipulated by the Government of Kerala and serve the neediest patients with quality care are a matter of debate. Hence, a microlevel study of the palliative care unit is attempted. The aims of the study were to understand the extent to which the structure and nature of functioning of the Pain and Palliative Care Unit under LSGI comply with guidelines set by the Pain and Palliative Care Policy of the Government of Kerala and to check whether the palliative care services are reaching the needy and, if so, are they provided to patients in good quality. Materials and Methods: The award winning Pain and Palliative Care Unit attached to LSGI is selected for analysis and a hybrid research design is followed. Data are collected from 25 patients and their caregivers selected randomly. Mean score of satisfaction level on the basis of Quality care questionnaire -Palliative care is used. Results: Sample unit complies with the revised guidelines of 2015, Pain and Palliative Care Policy. It serves the neediest patients and the quality of care is satisfactory. Conclusion: The study reaffirms the strength of the public health model in palliative care which can provide quality care to the neediest patients.

Objectives: Nurses provide care to patients in all contexts and at all stages of their lives. Their contributions are crucial to meeting global goals like Universal Health Coverage (UHC) and the Sustainable Developmental Goals (SDG) which present challenges and opportunity to improve nursing services including rehabilitation and palliative care. This study identifies challenges for empowering nurses to lead palliative care and achieve triple billion targets’. Determine reasons for challenges to empower nurses. Recommends strategies to overcome challenges in order to empower nurses to lead palliative care and achieve triple billion targets’. Materials and methods: Multiple brainstorming sessions were conducted through the Zoom platform among the three authors to ‘identify challenges for empowering nurses to lead palliative care and achieve triple billion targets’ and recommend strategies to overcome those challenges. Narrative literature review was conducted and experts’ opinions were elicited. Identified aspects were discussed in further brainstorming sessions. Result: Challenges and reasons for empowering nurses to lead palliative care and achieve triple billion targets’ were identified and strategies to overcome those challenges were recommended. Conclusion: Equitable, competent and compassionate palliative care is a primary tool to relieve serious health-related suffering. There is a pressing necessity to provide available, accessible, acceptable, quality, and cost-effective palliative nursing care. WHO proposed the triple billion targets to improve the health of billions where palliative care is an essential element that can be achieved only with proper identification of challenges and meticulous planning and implementation of strategies to overcome those challenges.

Background: Pain is the one the most dreadful side effects of head and neck cancers and cancer related treatments affecting patients during and after the treatment adding to the problems affecting their ability to speak, swallow, breath and feeding. Manual therapy is standard set of physiotherapy treatments used for alleviating neck pain. It has found to be effective in small subset of cancer patients for relieving pain. Objectives: To highlight the use of various manual therapy techniques focusing in decreasing neck pain and improving quality of life in Head and Neck Cancer survivors that may suggest its safe utilisation in oncology rehabilitation. Materials and Methods: Electronic search was conducted in PubMed, Google Scholar, CINAHL, Pedro, and COCHRANE databases. Reference lists of the included studies and relevant reviews were manually searched. Studies that met the inclusion criteria were evaluated using McMaster critical review form for quantitative studies. A descriptive synthesis was undertaken due to the heterogeneity of the included studies. Results: Seven studies were assessed for risk of bias that comprised of three clinical trials, one case series and three case reports that applied Maitland’s mobilisation, Myofascial release, Muscle Energy Techniques to head and neck cancer survivors in various clinical settings. The outcomes highlighted decrease in pain, improvement in cervical range of motion and quality of life. Conclusion: This review recommends application of manual therapy to head and neck cancer survivors. However, authors caution application of manual therapy in terms of choosing a particular technique. Further, well designed larger sample size with randomisation and double blinding would help to generate better evidence for head and neck cancer survivors.

Objectives: Premature death of a child from a serious illness is probably one of the most painful experiences for a parent. This study examined the clinical experiences of bereaved parents of children with a life-limiting illness to provide recommendations for quality care. Materials and Methods: Data were collected using semi-structured in-depth interviews with bereaved parents whose children had died at least 3 months before the interview. Parents were purposively sampled from two institutions offering end-of-life care to children with life-limiting illnesses. Data were analysed using thematic analysis. Results: Data analysis revealed three main themes: (1) Clinical communication, (2) Healthcare infrastructure and (3) Non-physical aspects of healthcare. The seven subthemes uncovered were as follows: (1) Honesty and clarity, (2) empathy, (3) interdisciplinary communication, (4) inconveniences in hospital, (5) home palliative care, (6) financial burden of illness and (7) psychosocial and spiritual support. Conclusion: Strategies to improve healthcare for children and their families are multifold. Underlying the provision of quality care is compassion; a child and family-friendly healthcare system with compassionate providers and compassionate institutional policies are vital components to achieving quality healthcare. Culturally sensitive psychosocial, emotional and spiritual support will need to be integrated as standard care.

Objectives: The corona virus disease-19 (COVID-19) pandemic has affected every domain of human health be it physical or mental. The uncertainty of disease progression in patients with SARS-CoV-2 infection can lead to major psychological and psychiatric concerns that should not be overlooked. The interventions should be directed to the vulnerable population to help them mitigate the stress and anxiety caused by the infection and isolation. We evaluated the effect of meditation and breathing exercises on the well-being of patients with SARS-CoV-2 infection under institutional isolation. Materials and Methods: We conducted a randomized control trial on 84 subjects, 18 years and above, asymptomatic, or mildly symptomatic SARS-CoV-2 infected patients under institutional isolation. Subjects were randomly and equally divided into a control group and interventional group. We measured the depression, anxiety, and stress levels as well as quality of sleep in patients after 7 days of meditation and breathing exercises in the intervention group versus standard care in the control group. Results: Mediation and breathing exercises had a statistically significant effect on the depression level (P < 0.001), stress level (P = 0.004), and the quality of sleep [trouble falling asleep (P = 0.007), trouble staying asleep (P = 0.004), and feel tired after waking up in the morning (P = 0.003)]. Further, the positive effect of intervention on the level of anxiety in patients under isolation was also observed; however, the difference was not found to be statistically significant (P = 0.528). Conclusion: Meditation and breathing exercises have positive effects on depression, stress levels, and quality of sleep in COVID-19 positive patients under strict institutional isolation.

Objectives: This study aims to explore the psychosocial issues faced by the primary caregivers of advanced head and neck cancer patients with the primary objective to understand their experiences within social context. Materials and Methods: Burden and QOL of caregivers (n = 15) were quantified using Zarit Burden Interview schedule and caregiver quality of life index-cancer (CQOLC), respectively. Primary caregivers (n = 10) were interviewed using semi-structured interview schedule. Thematic analysis was employed to analyse the qualitative data. Descriptive statistics was used for quantitative data. Results: Four major themes emerged: (1) Impacts of caregiving, (2) coping with caregiving, (3) caregiver’s appraisal of caregiving and (4) caregiver’s perception of illness. Majority (73.3%) of the caregivers had QOL below 100. The mean CQOLC score was 73.07 (SD 24.17) and most (46.7%) of the caregivers reported mild-to-moderate burden, while 27% had little to no burden. The mean ZBI score was 32.4 (SD 18.20). Conclusion: Caregiving impacts the physical, emotional, financial and social aspects of caregiver’s life. Caregivers adopt active coping strategies to overcome the impacts of caregiving. Family acts as a major source of strength to manage the emotional constraints faced by Indian caregivers. Cultural beliefs and values of caregivers influence their appraisal of caregiving situation. Majority of the caregivers experienced mild-to-moderate burden while most of the caregivers scored low on QOL.

Objectives: Head and neck cancer (HNC) account for major cancer burden in the Indian population. Patients often present with a diversity of distressing physical and psychological symptoms, significantly affecting their quality of life. This study aims to determine the correlation between symptom cluster and perceived distress in such patients. Materials and Methods: This single center prospective observational study was done on 175 adults advanced HNC patients referred to palliative medicine outpatient clinic. Patients fulfilling eligibility criteria were regularly assessed for their symptoms and distress at baseline and followed up at days 7, 14, and 28. Results: Most patients belong to the age group of 40–50 years and having a diagnosis carcinoma of the tongue. The most common symptoms presented were pain, tiredness, loss of appetite, and feeling of well-being. We observed statistically significant correlation between total ESAS score and distress levels in patients at days 0, 7, and 14, respectively, (P = 0.003 vs. 0.0004 vs. 0.002). However, at day 28, no such statistically significant correlation was found (P = 0.085) suggesting attention to other factors during assessment. Conclusion: Outpatient palliative care consultations have shown significant improvement in symptom and distress score. Perceived distress in a person can not only be related to physical symptoms. Acute control of symptom may uncover underlying psychosocial and spiritual issues which need to be addressed promptly for better quality of life.