Indian Journal of Palliative Care最新文献

Objectives: End-stage kidney disease (ESKD) is a life-limiting illness that leads to significant health-related suffering for the patients and their caregivers. Moreover, disease-directed options such as dialysis and renal transplant might not be universally accessible. Inadequate assessment and management of symptoms often lead to diminished quality of life. For evaluating symptoms and their associated distress, various tools have been identified. However, these are not available for the native Kannada-speaking population for assessing ESKD symptom burden. In this study, we determined the reliability and validity of the Edmonton Symptom Assessment System Revised Renal (ESAS-r: Renal) in Kannada-speaking ESKD patients.

Materials and methods: ESAS-r: Renal English version was translated into Kannada using the forward and backward method. The translated version was endorsed by Nephrology, Palliative care, Dialysis technology and Nursing experts. As a pilot study, 12 ESKD patients evaluated the content of the questionnaires for appropriateness and relevance. The ESAS-r: Renal Kannada version was validated by administering this tool to 45 patients twice a fortnight.

Result: The translated ESAS-r: Renal Kannada version questionnaire had an acceptable face and content validity. Experts' opinion was assessed by content validity ratio (CVR), and the value of CVR of ESAS-r: Renal Kannada version was-'1'-. Internal consistency of the tool was assessed among Kannada-speaking ESKD patients; its Cronbach's α was 0.785, and test-retest validity was 0.896.

Conclusion: The validated Kannada version of ESAS-r: Renal was reliable and valid for assessing symptom burden in ESKD patients.

Objectives: Patients with advanced cancer with incurable diseases are generally cared for by their families in India. There is a lack of data on the perceived caregiver burden, quality of life (QOL) of patients and caregivers in India, especially among cancer patients not on any oncologic management.

Material and methods: We conducted a cross-sectional study among 220 patients of advanced cancer on best supportive care and their respective 220 family caregivers. Our primary objective was to identify a correlation between caregiver burden and QOL. After taking informed consent from both patients and caregivers, we assessed the QOL of the patient using the European Organization for the Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire Core 15 Palliative Care (QLQ C15PAL) questionnaire from the patient, assessing the Caregiver Burden using Zarit Burden Interview, assessing the QOL of the caregiver using the WHO QOL BREF Questionnaire, in a single session during their routine follow-up in the Palliative Care Clinic of our institution.

Results: We noticed a statistically significant negative (Spearman) correlation between the Caregiver Burden as assessed by Zarit Burden Interview (ZBI) and the psychological (r = -0.302, P < 0.01), social (r= -0.498, P < 0.01) and environmental (r = -0.396, P < 0.01) domains of the WHO QOL BREF Questionnaire. Caregiving Burden as assessed ZBI total score was noted to have a statistically significant negative correlation with physical functioning (r = -0.37, P < 0.01), emotional functioning (r = -0.435, P < 0.01) and global QOL scores (r = -0.499, P < 0.01) assessed from the patient using the EORTC QLQ C15 PAL questionnaire. It also had a statistically significant small positive correlation with EORTC QLQ C15 PAL symptom scores, such as dyspnoea, insomnia, constipation, nausea, fatigue and pain. The median caregiver burden score was 39, showing higher burden as compared to previous studies. Caregivers who were spouses of the patient, illiterate, homemakers, with low-income families reported higher burden.

Conclusion: A high perceived caregiving burden is associated with impaired QOL in family caregivers of advanced cancer patients on best supportive care. Multiple patient related factors and demographic factors tend to affect burden of the caregiver.

The demand for palliative care (PC) is ever-increasing globally. The emergence of COVID-19 pandemic has further accelerated the need for PC. In the lower-income countries (LICs), where PC need is highest, PC, the most humane, appropriate and realistic approach to care for patients and families affected by life-limiting illness, is minimal or non-existent. Recognising the disparity between high, middle and LICs, the World Health Organization (WHO) has recommended public health strategies for PC within the socioeconomic, cultural and spiritual contexts of individual countries. This review aimed to: (i) identify PC models in the LICs utilising public health strategies and (ii) characterise how social, cultural and spiritual components were integrated into these models. This is an integrative literature review. Thirty-seven articles were included from a search of four electronic databases - Medline, Embase, Global Health and CINAHL. Literature, both empirical and theoretical literature, published in English from January 2000 to May 2021 that mentioned PC models/services/programmes integrating public health strategies in the LICs were included in the study. A number of LICs utilised public health strategies to deliver PC. One-third of the selected articles highlighted the importance of integrating sociocultural and spiritual components into PC. Two main themes - WHO-recommended public health framework and sociocultural and spiritual support in PC and five subthemes - (i) suitable policies; (ii) availability and accessibility of essential drugs; (iii) PC education for health professionals, policymakers and the public; (iv) implementation of PC at all levels of healthcare and (v) sociocultural and spiritual components, were derived. Despite embracing the public health approach, many LICs encountered several challenges in integrating all four strategies successfully.

Objectives: Pressure ulcers are the most common condition among palliative care patients at home care facilities and impose a significant burden on patients, their relatives, and caregivers. Caregivers play a vital role in preventing pressure ulcers. When the caregivers are knowledgeable about preventing pressure ulcers, they will be able to avoid lots of discomfort for the patients. It will help the patient to achieve the best quality of life and spend the last days of life peacefully and comfortably with dignity. It is essential to develop evidence-based guidelines for caregivers of palliative care patients on pressure ulcer prevention, which may play a major role in preventing pressure ulcers. The primary objective is to implement evidence-based guidelines for caregivers of palliative care patients on pressure ulcer prevention.The secondary objective is to improve the knowledge and practice of caregivers and enable them to take measures to prevent pressure ulcer development among palliative care patients, thereby improving the quality of life of palliative care patients.

Materials and methods: Following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses), a systematic review was conducted. The search was conducted using electronic databases Pub Med, CINHAL, Cochrane and EMBASE database. The studies selected were in the English language and with free full text. The studies were selected and assessed for quality using the Cochrane risk assessment tool. Clinical practice guidelines, systematic reviews, and randomized controlled trials conducted on pressure ulcer prevention in palliative care patients were selected for the review. Twenty Eight studies were found to be potentially relevant after screening the search results. Twelve studies were not found suitable. 5 RCTs did not meet the inclusion criteria. Finally, four systematic reviews, five RCTs, and two clinical practice guidelines were included in the study, and guidelines were prepared.

Results: Based on the best available research evidence, clinical practice guidelines were developed on skin assessment, skin care, repositioning, mobilization, nutrition, and hydration to prevent pressure ulcers to guide caregivers of palliative care patients.

Conclusion: The evidence-based nursing practice integrates the best research evidence with clinical expertise and patient values. Evidence-based nursing practice leads to a problem-solving approach which is existing or anticipated. This will contribute to choosing appropriate preventive strategies for maintaining patients' comfort, thereby improving the quality of life of palliative care patients. The guidelines were prepared through an extensive systematic review, RCT, and other guidelines followed in different settings and modified to suit the current setting.

Objectives: Delirium increases distress in patients and caregivers and often leads to hospitalisation and increased health-care costs. It is early diagnosis and management improves the quality of life (QoL) of advanced cancer patients as well as their families. This quality improvement (QI) project aimed at increasing delirium assessment in poor performance advanced cancer patients receiving palliative homecare.

Material and methods: The A3 methodology for QI was used. Our SMART goal was to increase the assessment of delirium in poor performance advanced cancer patients from 25% to 50%. The Fishbone and Pareto analysis helped to determine the reasons for low assessment rates. A validated screening tool for delirium assessment was selected and the homecare team doctors and nurses were trained to use it. A flier was designed to help educate families about delirium.

Results: Regular use of the tool helped to increase delirium assessment from an initial 25-50% at the time of project completion. The homecare teams learnt the importance of early delirium diagnosis and the need for regular delirium screening. Family caregivers were empowered through education and use of fliers.

Conclusion: The QI project helped to improve delirium assessment and leading to improved QoL of patients and their caregivers. Regular training and awareness and continued use of a validated screening tool should help to sustain the results.

Objectives: Palliative heart surgery is a compelling option for some children with congenital heart disease for which corrective heart surgery is not yet possible due to its complexity. As primary caregivers, mothers have the challenge of providing optimal care to their children at home post-surgery. This study aims to explore the experiences of mothers who are caring for children recovering from palliative heart surgery at home. The research applied descriptive, qualitative and phenomenology design.

Material and methods: This study was conducted in Jakarta. The participants were 15 mothers of palliative heart surgery patients from seven provinces in Indonesia; Jakarta, Aceh, Bali, North Sumatra, West Java, Central Java and Banten. Data were collected using semi-structured interviews through the WhatsApp video call application and analysed using the Colaizzi method.

Results: Mothers often felt uncertain about how to provide the best care and felt that their needs for hospital services to assist them went unmet. Conclusions: This study has implications for the development of nursing services related to discharge planning for palliative heart surgery patients.

Objectives: While the principles for developing clinical practice guidelines (CPGs) are well established, the quality of published guidelines is very diverse. The present study was conducted to evaluate the quality of existing CPGs in palliative care for heart failure patients.

Material and methods: The study was conducted according to the Preferred Reporting Items for Systematic reviews and Meta-analyses. A systematic search was conducted in the Excerpta Medica Database, MEDLINE/PubMed, CINAHL databases and Guideline internet sites: National Institute for Clinical Excellence, National Guideline Clearinghouse, Scottish Intercollegiate Guidelines Network, Guidelines International Network and National Health and Medical Research Council for CPGs published through April 2021. Criteria for including CPGs were: Containing palliative measures for patients with heart failure over 18 years old and preferably interprofessional guidelines that focus on only one dimension of palliative care or focus on diagnosis, definition and treatment were excluded from the study. After initial screening, five appraisers rated the quality of the final selection of CPGs using the Appraisal of Guidelines for Research and Evaluation, 2^nd edition (AGREE II).

Results: From 1501 records, seven guidelines were selected for analysis. The 'scope and purpose' and 'clarity of presentation' domains obtained the highest mean and 'rigor of development' and 'applicability' domains obtained the lowest mean scores. Three categories of recommendations were: (1) Strongly recommended (guidelines 1, 3, 6 and 7); (2) recommended with modifications (guideline 2) and (3) not recommended (guidelines 4 and 5).

Conclusion: Clinical guidelines for palliative care in patients with heart failure were of moderate-to-high quality, with the main deficiencies occurring in the rigor of development and applicability domains. The results inform clinicians and guideline developers of the strengths and weaknesses of each CPG. To improve the quality of palliative care CPGs in the future, it is recommended that developers pay detailed attention to all domains of the AGREE II criteria. Funding agent: Isfahan University of Medical Sciences. (IR.MUI.NUREMA.REC.1400.123).

Introduction: In mid-March 2020, the Kerala government implemented additional preventive measures to the steps already taken to reduce the transmission of COVID-19. Strategies were taken by a non-governmental palliative care organisation (Pallium India) with Coastal Students Cultural Forum - a coastal area-based collective of young educated people in the coastal region to address the medical needs of people living in this community. The facilitated partnership lasted 6 months (July-December 2020) and addressed the palliative care needs of the community in the selected coastal regions during the first wave of the pandemic. Volunteers sensitised by the NGO identified more than 209 patients. The current article highlights the reflective narratives of key players in this facilitated community partnership.

Materials and method: The current article is dedicated to highlighting the reflective narratives of key players in this facilitate community partnership to the readers of this journal. The palliative care team's overall experience was collected from selected key participants to understand the program's impact, identify areas of improvement, and discuss possible solutions if there were any challenges. The contents below are their statements on the experience of the entire program.

Conclusion: Palliative care delivery programmes must be configured to respond to local needs and customs, be community-based and integrated with local health and social care and have accessible referral pathways between and across services. They must also be responsive to changing individual and population needs and shifts in local and national health structures.