Indian Journal of Palliative Care最新文献

{"title":"Artificial Intelligence: A Boon to Palliative Care Providers and Cancer Patients?","authors":"Nishkarsh Gupta, Anju Gupta","doi":"10.25259/IJPC_218_2024","DOIUrl":"10.25259/IJPC_218_2024","url":null,"abstract":"","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"30 3","pages":"187-188"},"PeriodicalIF":1.1,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11450769/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142380717","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Battling Alone on Multiple Fronts - How Gender Norms Affect the Soldiers' Wife as Caregiver in India.","authors":"Savita Butola, Damini Butola","doi":"10.25259/IJPC_79_2023","DOIUrl":"10.25259/IJPC_79_2023","url":null,"abstract":"<p><strong>Objectives: </strong>Women form the backbone of caregiving in palliative home care throughout the world. They put in more intense care for longer hours, perform more intimate tasks, and face more physical and mental strain, comorbidities, anxiety, and depression. However, gender norms that perceive caregiving as a natural part of femininity dismiss this as part of their duty toward their family, thus making their care work invisible, taken for granted, and devalued. This results in women bearing more burden with less support and no appreciation and suffering more negative mental and physical health outcomes than men. Globally, women perform 76.2% of unpaid care work. India ranks a dismal - 135 out of 146 countries in the 2022 Gender Gap report. Less than 10% of Indian men participate in household work. Women in rural India continue to be less educated; the majority are not allowed to travel alone and are culturally not involved in decision-making, which is done by the males. Wives of armed forces personnel are forced to live without their husbands for long periods. This leads to even more challenges when they also need to take care of patients with life-limiting illnesses. No study has been done on this population till now. This study aimed to explore the experiences of the women in armed forces families, caring at home for patients with palliative needs.</p><p><strong>Materials and methods: </strong>This was a qualitative study based on a thematic analysis of semi-structured interviews with adult caregivers - either serving personnel or their dependent family members.</p><p><strong>Results: </strong>Female relatives were the main caregivers in 13 cases; the majority belonged to rural areas, were between 22 and 47 years of age, most were married, had young children, and reported health issues of their own. Major themes that emerged include lack of information, the expectation of being a caregiver irrespective of ability/needs, physical and psychological burden, neglected emotional needs, difficulty in traveling alone, social isolation, loss of employment with the financial burden, stigmatisation and ill-treatment of widows by in-laws.</p><p><strong>Conclusion: </strong>'Soldier's wives, who must stay alone, face increased burdens as they face not only the physical and emotional burden of caregiving but also the additional challenges of living alone, mostly in rural Indian society, where gender norms are still deeply ingrained. Creating awareness about this vulnerable community among palliative care providers is required to improve services for them. There is also an urgent need for identifying, challenging, and addressing stereotyped roles and disparities in healthcare systems, practices, care goals, and policies by sensitising staff, educating families, developing gender-sensitive resources and support systems, initiating care discussions, and undertaking more gender-related research.</p>","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"30 3","pages":"222-231"},"PeriodicalIF":1.1,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11450896/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142380718","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"How Were Palliative Care Assessments Performed by Students During a Clinical Nursing Experience? A Study in Interpretive Phenomenology Analysis.","authors":"Titan Ligita, Nita Arisanti Yulanda, Balqis Balqis, Dinda Maharani","doi":"10.25259/IJPC_328_2023","DOIUrl":"10.25259/IJPC_328_2023","url":null,"abstract":"<p><strong>Objectives: </strong>There has been limited investigation into nursing students' experiences of carrying out comprehensive assessments. Consequently, there is a need to explore the most effective and efficient assessment approach for students conducting palliative assessments for patients. This study aimed to investigate nursing students' experiences of performing palliative assessments while on clinical placement in a hospital.</p><p><strong>Materials and methods: </strong>This research was conducted in West Kalimantan, Indonesia. Eight nursing students participated in semi-structured interviews utilising open-ended questions, generating 10 audio recordings. This qualitative study applied interpretative phenomenology analysis, with data analysed thematically.</p><p><strong>Results: </strong>The study identified eight substantial themes that illustrate the experiences of nursing students in palliative care assessment: <i>Upgrading assessment skills, Contributing influences in the assessment process, The way the patient responds to the assessment, Replenishment of data, The importance of family involvement, Emerging issues in the assessment process, Approaches to assessment</i> and <i>Refining the assessment process</i>. The study enhances comprehension of how students surmount assessment challenges.</p><p><strong>Conclusion: </strong>The findings present a potential guide for future research on assessing the effectiveness of palliative care instruments employed by nurses to enhance comprehensive holistic assessments for patients.</p>","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"30 3","pages":"200-206"},"PeriodicalIF":1.1,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11450844/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142380721","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Preferred and Actual Places of Death Among Patients with Advanced Cancer: A Single-centre Cohort Study in Japan.","authors":"Tomoo Ikari, Yusuke Hiratsuka, Takayuki Oishi, Mitsunori Miyashita, Tatsuya Morita, Jennifer W Mack, Yoshinari Okada, Natsuko Chiba, Chikashi Ishioka, Akira Inoue","doi":"10.25259/IJPC_133_2024","DOIUrl":"10.25259/IJPC_133_2024","url":null,"abstract":"<p><strong>Objectives: </strong>Achieving a 'good death' is one of the important goals of palliative care. Providing goal-concordant care and an environment tailored to the patient's preferences can contribute to a 'good death'. However, the concordance rate between the preferred and actual places of death among advanced cancer patients in Japan is less explored. This study aimed to identify the concordance between patients' preferred and actual places of death and the associated factors among patients with advanced cancer in Japan.</p><p><strong>Materials and methods: </strong>Patients with advanced cancer who underwent chemotherapy at Tohoku University Hospital between January 2015 and January 2016 were enrolled and followed up for 5 years. The enrolled patients were asked about their preference for their place of death. The response options were: \"Own home,\" \"General ward\" and \"Palliative care unit (PCU).\" We compared the actual place of death with the patient's preference through a follow-up review of the medical records.</p><p><strong>Results: </strong>A total of 157 patients with advanced cancer were enrolled between January 2015 and January 2016. Of these patients, 22.9% (11/48) died at home according to their preference, 64.0% (16/25) in the general ward and 37.9% (11/29) in the PCU. Only thirty-seven (37.3%) patients died where they wanted, based on the comparison between patients' preferences and actual places of death.</p><p><strong>Conclusion: </strong>The concordance rate between the preferred and actual places of death is not high in Japan. Improving concordance between patients' preferences and actual places of death has the potential to improve end-of-life care.</p>","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"30 3","pages":"268-274"},"PeriodicalIF":1.1,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11450858/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142380724","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Translation and Linguistic Validation of the Multidimensional Dyspnea Profile into Hindi in a Palliative Care Setting.","authors":"Maria Kökeritz, Lovisa Dufberg, Gayatri Palat, Magnus Ekström, Eva Brun, Mikael Segerlantz","doi":"10.25259/IJPC_46_2024","DOIUrl":"10.25259/IJPC_46_2024","url":null,"abstract":"<p><strong>Objectives: </strong>The Multidimensional Dyspnea Profile (MDP) comprehensively addresses dyspnea, incorporating both perceptual and affective components, and has proven effective in assessing breathlessness among patients with chronic lung conditions. Despite its validation in High-Income Countries, its applicability in Low/Middle-Income countries remains uncertain. Additionally, the MDP has not been translated into Hindi or validated in an Indian context. Our aim was to translate the MDP into Hindi and linguistically validate it for use in an Indian palliative care setting, with a high rate of illiteracy.</p><p><strong>Materials and methods: </strong>The comprehensibility and acceptability of the translated MDP in Hindi were assessed through in-depth interviews with seven Hindi-speaking patients with cancer. The study focused on tailoring the MDP in a socioeconomically disadvantaged population characterized by a high rate of illiteracy. The translation process involved forward and backward translations by independent certified translators, with input from in-country Indian palliative medicine physicians and healthcare personnel.</p><p><strong>Results: </strong>The Hindi version of the MDP was adapted for use in an Indian context and in a population with a high rate of illiteracy, aligning with international guidelines for Patient-Reported Outcomes demonstrating relevance in a specific cultural and healthcare context. The MDP increased healthcare staff 's understanding of underlying causes of dyspnea in a socioeconomically disadvantaged population enrolled into palliative care and with a high rate of illiteracy.</p><p><strong>Conclusion: </strong>The study underscores the importance of linguistic validation and cultural adaptation in ensuring the applicability of Patient-Reported Outcomes measures in diverse healthcare settings. Because the MDP can be perceived as time-consuming, selected parts of the instrument may be used as needed.</p>","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"30 3","pages":"252-259"},"PeriodicalIF":1.1,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11450885/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142380725","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development of a Simple Patient-reported Outcome Measurement for Terminally Ill Cancer Patients Receiving Home-based Palliative Care.","authors":"Porntip Preechachaiyawit, Jiruth Sriratanaban, Bhorn-Ake Manasvanich","doi":"10.25259/IJPC_100_2024","DOIUrl":"10.25259/IJPC_100_2024","url":null,"abstract":"<p><strong>Objective: </strong>To develop a patient-reported outcome measurement for terminally ill cancer patients (PROMs-TCP) receiving home-based palliative care, which is valid, reliable and easy to use by patients or caregivers to indicate urgent needs for assistance from the care team.</p><p><strong>Materials and methods: </strong>Three-step approach consisting of literature review, focus groups and questionnaire testing. 169 terminally ill cancer patients who received palliative care at Cancer hospital, tertiary-care hospital and university school of medicine in Thailand. The PROMs-TCP comprised five key questions with a total score of 10 and one supplemental question. PROMs-TCP was tested for content validity, internal consistency and inter-rater reliability, criterion validity, discriminant validity and sensitivity to change. The palliative care outcome scale (POS) was used as an indicator.</p><p><strong>Results: </strong>PROMs-TCP consists of five questions. The item-level content validity index (CVI) ranged from 0.8 to 1, and the scale-level CVI was 0.97. PROMs-TCP correlated well with POS scores, with correlations ranging from -0.7 to -0.8. Internal consistency was good (Cronbach's α = 0.85), while inter-rater agreements between patients and caregivers and between patients and nurses were moderate to good (Cohen's weighted k = 0.69-0.87). The tool could reasonably discriminate terrible days from good days for the patients. It was also responsive to change scores, with effect size scores of 0.36.</p><p><strong>Conclusion: </strong>PROMs-TCP could be used for daily health status assessment of home-based patients with terminally ill cancer, supporting the provision of palliative care in primary care settings.</p>","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"30 3","pages":"260-267"},"PeriodicalIF":1.1,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11450855/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142380720","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Salute to the Silent Warriors: Reflecting on the Role of Soldiers' Wives in Care Giving.","authors":"Lovely Antony","doi":"10.25259/IJPC_221_2024","DOIUrl":"https://doi.org/10.25259/IJPC_221_2024","url":null,"abstract":"","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"30 3","pages":"288"},"PeriodicalIF":1.1,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11450841/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142380716","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Management of Lymphoedema and Lymphorrhoea with Wrap around Compression in Breast Secondary to Carcinoma Breast: Case Report","authors":"Aradhana Shukla, Nitesh M. Gonnade, Manoj Kamal","doi":"10.25259/ijpc_165_2023","DOIUrl":"https://doi.org/10.25259/ijpc_165_2023","url":null,"abstract":"Lymphoedema secondary to breast cancer is one of the most unfortunate outcomes, and lymphoedema secondary to breast cancer in the ipsilateral upper extremity and its management, has been described in the literature. We are reporting a case of lymphoedema and lymphorrhoea in the breast itself, managed by compression bandaging with limited resources and the use of active pharmacological agents in the palliative care unit of a tertiary care hospital. Lymphoedema and lymphorrhoea in the breast are not very common to see in clinics, but management of this case even though no protocol available, was done by modification of bandaging techniques available for limb lymphoedema management.","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"1 6","pages":""},"PeriodicalIF":1.1,"publicationDate":"2024-01-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139439394","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Pain and Wound Management in Fungating Merkel Cell Carcinoma within a Palliative Setting: The First Case Report of this Predicament","authors":"Shaan Mohan, Ahmad Khan","doi":"10.25259/ijpc_259_2023","DOIUrl":"https://doi.org/10.25259/ijpc_259_2023","url":null,"abstract":"Merkel cell carcinoma (MCC) is a rare type of skin cancer of the neuroendocrine Merkel mechanoreceptors. These cells are closely associated with nerve terminals and, given their proximity to cutaneous tissue, have the propensity to develop into deeply ulcerated, fungating malignancies. These friable wounds are easily irritated, and can cause significant pain for patients. We report a palliative case of severe, fungating MCC of the left scalp where the main contributor to the patient’s illness burden is pain. Having been referred to palliative care by the Tissue Viability team, this 90-year-old gentleman was complaining of episodic burning pain during dressing changes, which was associated with radiation to the forehead, nausea, and significant trait anxiety. It was theorised that this pain could be in part due to tension headache, not just nociception, and anticipatory lorazepam was prescribed to relieve trait anxiety. All symptoms were majorly relieved following this administration. A specialist dressing was implemented to absorb exudate and balance moisture, which we believe may have stopped further deterioration of pain. Overall, this report emphasises the need to consider alternative pain aetiologies other than nociception in a presentation that is not found in the literature.","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"60 2","pages":""},"PeriodicalIF":1.1,"publicationDate":"2024-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139445219","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exploring the Effectiveness of Ajwain Cream in Treating Taxane-induced Peripheral Neuropathy in Cancer Patients: A Pilot, Randomised and Double-blind Clinical Trial","authors":"G. Heydarirad, Hamid Reza Mirzaei, Reyhaneh Gharehgozlou, J. Buentzel, M. R. Namazi, M. Pasalar","doi":"10.25259/ijpc_32_2023","DOIUrl":"https://doi.org/10.25259/ijpc_32_2023","url":null,"abstract":"\u0000\u0000Chemotherapy-induced peripheral neuropathy is a common disorder among cancer patients receiving various chemotherapeutic protocols. The present study aimed to explore the feasibility of ajwain (Trachyspermum ammi [L.] Sprague) cream in treating peripheral neuropathy symptoms triggered by taxane chemotherapeutic agents.\u0000\u0000\u0000\u0000This was a pilot, double-blind, and randomised clinical trial on patients with peripheral neuropathy attributable to chemotherapy with taxane drugs during 2021–2022 in Tehran. Patients received ajwain or placebo cream for four weeks and filled out the chemotherapy-induced peripheral neuropathy assessment tool (CIPNAT) at the start and end finale of the trial. Side effects were also noted.\u0000\u0000\u0000\u0000Thirty patients suffering from breast, lung, gastro-intestinal, or prostate cancer were allocated to each of the drug and placebo groups. The mean difference in CIPNAT score between the groups was 0.83, demonstrating the statistical ineffectiveness of the drug compared with the placebo (P = 0.372). The safety profile showed promising outcomes at the end of the trial.\u0000\u0000\u0000\u0000Although the effectiveness of ajwain cream was unacceptable in treating chemotherapy-induced peripheral neuropathy symptoms, multicentre controlled trials with ample sample size are mandatory for an all-inclusive inference.\u0000","PeriodicalId":13319,"journal":{"name":"Indian Journal of Palliative Care","volume":"13 2","pages":""},"PeriodicalIF":1.1,"publicationDate":"2024-01-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139380572","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}