The paper is based on mixed-methods analysis, including qualitative (thematic analysis) and quantitative (word frequency and trends analysis), to thoroughly investigate the existing body of literature pertaining to the influence of social media (SM) on palliative care (PC). The time frame of the analysis is for a 5-year (2018-2023). The paper attempts to explore dominating themes and explore how SM has impacted the arena of palliative, how these platforms affect patient and community involvement and how successful digital communication tactics are when used to advocate for PC.
Objectives: Neurodegenerative disorders necessitate comprehensive palliative care due to their progressive and irreversible nature. Limited studies have explored the comprehensive assessment needs of this population. This present study is designed to develop a checklist for evaluating the palliative care needs of individuals with motor neuron disease (MND) and Parkinson's disease (PD).
Materials and methods: The checklist was created through an extensive literature review and discussions with stakeholders in neuropalliative. Feedback from six field experts led to the finalisation of the checklist, which comprised 53 items addressing the unique biopsychosocial needs of MND and PD. Sixty patient-caregiver dyads receiving treatment in a tertiary referral care centre for neurology in south India completed the checklist.
Results: People with MND had more identified needs with speech, swallowing, and communication, while people with PD reported needs in managing tremors, reduced movements, and subjective feelings of stiffness. People denying the severity of the illness was found to be a major psychosocial issue. The checklist addresses the dearth of specific tools for assessing palliative care needs in neurodegenerative disorders, particularly MND and PD. By incorporating disease-specific and generic items, the checklist offers a broad assessment of patients' multidimensional needs.
Conclusion: This study contributes to the area of neuropalliative care by developing the neuropalliative care needs checklist (NPCNC) as a valuable tool for assessing the needs of individuals with neurodegenerative diseases. Future research should focus on refining and validating the NPCNC with larger and more diverse groups, applicability in different contexts, and investigating its sensitivity to changes over time.
Acute intermitttent porphyria belongs to a rare group of diseases hallmarked by deficient biosynthesis of heme. It carries a significant symptom burden, both physical and emotional,and therefore palliative care has emerged as an essential tool in the armamentarium of porphyria management . It takes care of the patient as a whole and caters to all aspects that the disease process demands. There are many lacunae in the literature regarding the palliative management of porphyria. We are reporting a case of a 16-year-old female who presented with severe abdominal pain, lower backache and symmetrical bilateral lower limb pain to the palliative ward referred by the neurology department for supportive care. This case describes the palliative care aspects of porphyria management which was successfully provided in the palliative care unit right from referral till the last. A multidisciplinary palliative care team managed the patient, and the necessary interventions were provided to the patient and family. Palliative acre in AIP needs to be emphasized, and palliative care services need to be utilized in these cases. The unavailability of specific treatment measure, heme, in countries like India further emphasizes the need for long-term supportive care for the patient and family. The case shows the importance of palliative care throughout the disease course as it is a chronic disease with significant morbidity and carries a heavy symptom burden. This case provides the insight that rather than conventional management alone for such chronic diseases, palliative care should be incorportated. Early integration with palliative care helps in exploring all the domains of disease. This is one of the first cases reported highlighting palliative care in porphyria , bridging the gap in the literature.
Objectives: 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.
Materials and methods: 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.
Results: 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.
Conclusion: '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.
Objectives: 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.
Materials and methods: 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.
Results: The study identified eight substantial themes that illustrate the experiences of nursing students in palliative care assessment: 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 and Refining the assessment process. The study enhances comprehension of how students surmount assessment challenges.
Conclusion: 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.
Objectives: 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.
Materials and methods: 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.
Results: 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.
Conclusion: 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.
Objectives: 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.
Materials and methods: 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.
Results: 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.
Conclusion: 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.
Objective: 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.
Materials and methods: 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.
Results: 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.
Conclusion: 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.
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