The latest medical research on Hospice And Palliative Medicine
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Request AccessAdvancing Evidence-based Palliative Care Research: Navigating Challenges and Proposing Solutions.
Indian Journal of Palliative CareAmid the increasing demand for palliative care, driven by demographic shifts and medical progress, evidence-based practices face obstacles due to l...
Beneficiary's Satisfaction with Primary Palliative Care Services in Kerala - A Cross-Sectional Survey.
Indian Journal of Palliative CareKerala was the first state to implement a community-based, sustainable primary palliative care (PC) home care (HC) model. Beneficiary satisfaction, an important indicator to assess the quality of service provision with the HC program, has not been assessed since the programme was launched 14 years ago. This study tried to assess the satisfaction of beneficiaries receiving primary PC services through the Kerala State PC programme and the factors associated with the same.
The cross-sectional survey was conducted among 450 patients registered under the Kerala State Primary PC Programme. Data were collected using a semi-structured questionnaire from October 2022 to January 2023. We summarised the data as proportions and performed Chi-square tests to make comparisons wherever applicable.
Most of the beneficiaries (69.1%) were satisfied with HC services. The mean age of the beneficiaries was 65.51 ± 17 years. More than 80% of the participants (88.4%) were married, and the primary caregivers were wives (31.8%) and daughters/daughters-in-law (35.3%). The primary diagnosis of the beneficiaries was a cerebrovascular accident (27.4%), cancer (18.8%), and spinal cord injury (13.2%). The study examined the needs of beneficiaries and found that the top three requirements reported by the patients were the inclusion of doctor visits in HC (71.8%), medicine distribution at home (67.4%), and physical rehabilitation services at home with a minimum of three sessions per month (52.3%). The study found a statistically significant association (P < 0.05) between the Beneficiary's satisfaction and behaviour of PC nurses and certain services, including physiotherapy, procedural care specifically catheterisation and wound dressing, and health check-ups received through the HC program. Satisfaction was reported more in Thiruvananthapuram district, followed by Malappuram.
The overall satisfaction with the Kerala State Primary PC Programme was found to be high at about 69%. Despite the fact that the study identified significant relationships between nurses' behaviour, services provided (physical therapy, procedures, and health checks), and satisfaction, the findings suggested expanding the scope of the HC programme by including doctor visits and medicine delivery at patient's home.
Patient-Controlled Therapy with Intravenous Oxycodone in Breathlessness due to Advanced Cancer: A Case Report.
Indian Journal of Palliative CareDyspnoea is a debilitating symptom in medicine, especially in palliative care. Opioids are the pharmacological agents of choice in the treatment of...
Biographical Renewal and its Facilitators in Cancer Survivorship: A Conceptual Paper.
Indian Journal of Palliative CareExperiencing cancer impinges life in several ways. Research on the biographical implications of cancer has focused on its disruptive nature. Biogra...
Exploring the Effectiveness of Ajwain Cream in Treating Taxane-induced Peripheral Neuropathy in Cancer Patients: A Pilot, Randomised and Double-blind Clinical Trial.
Indian Journal of Palliative CareChemotherapy-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.
This 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.
Thirty 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.
Although 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.
Nurses' Knowledge, Perceived Barriers and Practices Regarding Cancer Pain Management: A Scoping Review.
Indian Journal of Palliative CareNursing care plays a crucial role in the management of cancer pain, but nurses often face challenges due to inadequate knowledge, negative attitude...
Management of Lymphoedema and Lymphorrhoea with Wrap around Compression in Breast Secondary to Carcinoma Breast: A Case Report.
Indian Journal of Palliative CareLymphoedema secondary to breast cancer is one of the most unfortunate outcomes, and lymphoedema secondary to breast cancer in the ipsilateral upper...
A Prospective Study to Compare Caregivers' Knowledge and Perception of Cancer Pain with Patients' Pain Assessment and to Evaluate their Quality of Life.
Indian Journal of Palliative CareFamily caregivers (FCGs) play a crucial role in the home care of terminally ill patients. Therefore, evaluating their comprehension of patients' symptoms and doctors' advice becomes crucial. Moreover, this might negatively impact their quality of life (QOL). Thus, the purpose of the study was to examine FCGs' perception and understanding of cancer pain in relation to patients' pain assessments, as well as the effect this has on their own QOL.
The family pain questionnaire (FPQ) and patient pain questionnaire (PPQ) were used for both patient as well as their FCGs. The scores for each subscale, knowledge, and experience were calculated. Furthermore, FCGs' own QOL was assessed using the caregiver quality of life index-cancer (CQOLC) questionnaire. Results were statistically analysed.
The FCGs of 93 individuals were examined. The Cronbach alphas for the current dataset showed that the FPQ (0.754) and PPQ (0.759) overall reliability scales were satisfactory. The knowledge, experience, and total average scores for the PPQ (FPQ) subscales were reported as 35.91 (35.31), 27.19 (26.86), and 63.10 (62.17), respectively. The knowledge, experience, and overall scales of the PPQ (FPQ) were evaluated to provide median scores of 37 (36), 28 (25), and 65 (62) correspondingly. A t-test was used to determine the significance of the observed average differences (d) for knowledge (0.602), experience (0.333), and overall (0.935). The results showed that there were no significant differences (P > 0.05). An inverse relationship was elicited between the total QOL and the pain assessment scores of FCGs, as well as the age of the patient. The difference was, however, majorly statistically non-significant (P > 0.5). Further, statistical significance was found only between the burden component of the CQOLC and the age of the patients (P = 0.034), as well as total pain knowledge (P = 0.007) and total pain scores (P = 0.001) of the FCGs'.
As per our analysis, FCGs had less knowledge and experience of patients' pain, though statistically , it was not significant. The age of the patient, as well as total pain knowledge and total pain scores of the FCGs' were found to affect the QOL of FCGs'. Studies with large sample sizes might help in strengthening the findings.
Concerns of Primary Caregivers of Children with Complex Chronic Conditions in Kerala: A Qualitative Analysis.
Indian Journal of Palliative CareExploring data on primary caregiver experiences of dealing with chronically ill children (CIC) strengthens the ability of paediatricians to improve the quality of care by detecting unmet needs in paediatric palliative care and understanding their original concerns instead of presumed needs. Hence, this study aims to identify and describe the primary concerns and challenges faced by caregivers of children with complex chronic conditions in a tertiary care hospital in Kerala.
Primary caregivers of 25 children aged <13 years with non-malignant life-limiting illnesses, admitted to the paediatric department of a government medical college in Kerala between 1 July 2021 and 28 February 2022, underwent in-depth interviews to analyse their most worrisome issues. Thematic analysis was the method chosen for qualitative data analysis.
The main themes identified were medical issues, unmet needs, caregiver health issues, and social and financial issues. Among the medical issues, poor seizure control and infected bedsores, sleep deprivation in both patient as well as caregivers, and difficulty in maintaining the personal hygiene of patients were the major issues. Parents of almost all the CICs reported that they required diapers more than any other material or device. Maternal depression was the major caregiver health issue. The unavailability of antiepileptic drugs in peripheral health centres resulted in missing doses and undue expenses for travel to tertiary centres to obtain the same. Caregivers reported their dismay when they finally realised that they were given false hopes of a cure by different systems of medicine.
The challenges faced by caregivers of children with complex chronic conditions are multifaceted. Their most problematic issues related to medical issues are the occurrence of breakthrough seizures and development of infected bedsores. The most important material hardship reported was diaper needs. Caregiver issues such as sleep deprivation and maternal depression must be identified and addressed while providing comprehensive palliative care.
Assessment of Knowledge on Palliative Care among the Community Health Officers in Rural Area of Purba Medinipur District, West Bengal, India.
Indian Journal of Palliative CarePalliative care deals with patients who are facing problems of life-threatening diseases. Under the Ayushman Bharat programme, a new cadre of Community Health Officers (CHOs) is provisioned at Health and Wellness Centres (HWCs) who are nursing graduates. Being the team leader at the HWC level, having a low level of knowledge of palliative care would compromise their service. The study assessed the knowledge of CHOs about palliative care services in a rural district of Purba Medinipur, West Bengal, India.
A descriptive study with a cross-sectional design was carried out among 314 CHOs posted in different HWCs of Purba Medinipur, West Bengal, during July-August' 2022. We used to collect data based on questionnaires of 'Palliative-Care-Knowledge Questionnaire-Basic' comprising items related to palliative care, the requirement of palliative care, pain management, communication, and dealing with psychosocial issues. A chi-square test was performed to check the association with educational- and experience-related variables and knowledge.
Overall, adequate knowledge was present in 216 (68.8%) and inadequate knowledge in 98 (31.2%) of CHOs. Improper knowledge was present regarding the role of oxygen supplementation in dying patients, the need for palliative care in human immunodeficiency virus/acquired immunodeficiency syndrome, chronic non-malignant diseases, pain management, and communication about the prognosis of disease. The proportion of CHOs who had adequate knowledge who were highly educated (70%) and those who had previous job as CHO (73.3%). Almost similar knowledge scores were found among those who ever cared for or never cared for either terminally ill patients (P = 0.89) or cancer patients (P = 0.853).
In-depth knowledge was lacking among the CHOs. Training and re-training of CHOs to develop technical and communication skills will help them deliver proper palliative care.
Incidence of Different Characters of Neuropathic Pain in Cancer Patients Coming to Tertiary Care Centre in North India Over A Period of 1 Year - An Observational Study.
Indian Journal of Palliative CarePain is classified as nociceptive, neuropathic, or nociplastic. Neuropathic pain presents as variable phenotypes (characters) based on specific aetiology and pathophysiology. This study aimed to find out among cancer patients the incidence of different phenotypes of neuropathic pain and form specific phenotypic clusters based on the underlying neurophysiology and association of sensory profile with various organ systems - A prospective observational study.
The Institutional Ethical Committee clearance (IEC code: 2020-49-MD-EXP-15) https://ctri.nic.in/Clinicaltrials/showallp.php?mid1=44886&EncHid=88651.15716&userName=CTRI/2020/09/027964 approval was obtained. After written and informed consent, patients of age group 18-80 years, registering in the pain and palliative outpatient department or radiotherapy department with complaints of pain and not taking any anti-neuropathic pain medications, were enrolled. They were assessed using Leeds assessment of neuropathic symptoms and signs (LANSS) pain score, and a score of >12 was eligible for assessment of neuropathic pain phenotypes.
Out of 210 cancer patients complaining of pain, a neuropathic component with LANSS >12 was found in 73 (34.76%). The most predominant phenotypes, allodynia> tingling> pricking = burning, were found in 72.60%, 56.16%, and 43.84% of patients, respectively. Phenotypes were clustered into Nodes 1 and 2 based on clinically significant separation of phenotypes. Node 1 had neuropathic pain of spontaneous origin found predominantly in gastrointestinal tract (GIT) and genitourinary tract (GUT) cancers. Node 2 had stimulus-evoked negative and positive characters which occurred in head and neck, thoracic, and spinal metastatic cancers.
Careful patient assessment reveals the incidence of neuropathic pain in 34.76%; allodynia and tingling astable the most prominent phenotypes. Broadly, sensory characters were clustered into spontaneous and stimulus-evoked sensations with GIT and GUT cancers presenting with Node 1 symptoms.
Barriers Faced by Healthcare Providers during Home Visits of Palliative Care Patients - A Qualitative Study.
Indian Journal of Palliative CareWe, the Department of Community Medicine, have been training healthcare providers for palliative care in the hospital and community setting. There were many difficulties in providing proper palliative care. The objective is to explore the various difficulties faced by Junior Residents, auxiliary nurse and midwife (ANM) and medical social workers (MSWs) during the home visits of palliative care patients and to address those difficulties in future visits.
The study was conducted in our peripheral institutions such as the Rural Health Training Centre and the Urban Health Training Centre among Junior Residents, ANMs and MSWs who had provided palliative care for the patients. Qualitative study design includes participatory research action techniques such as force field analysis, cobweb diagram, and pairwise ranking, and Systematic techniques include the Delphi technique.
Indicators for difficulties faced by Junior Residents were derived and plotted based on priorities and joined to form a cobweb diagram. Difficulties were time constraints, lack of resources such as medications and transport facilities, need for specialist care, and non-adherence to the advice. Driving force and restraining force for palliative care were derived and plotted on the force field analysis. The favourable factors in providing palliative care services of the healthcare providers are self-satisfaction with treating the patient, satisfaction due to treatment at the doorstep, understanding the patient's psychological or social factors affecting their health, skill development and counselling of the patient. The restraining factors in providing palliative care services of the healthcare providers are time constraints, lack of resources, patient not following the advice properly, improper care by caregivers and unable to fulfill certain needs of the patient. Pairwise scoring/ranking was done for MSWs by plotting the issues faced in palliative care visits in rows and columns. The difficulties were time constraints, lack of resources, lack of proper knowledge of staff and need for specialist care. The possible potential solutions derived from the Delphi technique were proper planning to reduce time constraints and intense counseling of patients on adherence to treatment.
It helped to identify the difficulties faced by healthcare providers and to plan for solutions in future palliative home care visits.
