Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 105
Filtrar
1.
BMC Palliat Care ; 23(1): 130, 2024 May 22.
Artigo em Inglês | MEDLINE | ID: mdl-38778373

RESUMO

BACKGROUND: Globally, children with cancer often experience delays in palliative care referral or are infrequently referred. Therefore, we conducted a qualitative study to gain insight from paediatric oncologists into what enables or deters palliative care referral. Strategic solutions to develop integrated palliative care was a critical study theme. In this paper, we have explained and interpreted these strategic solutions through the lens of feedback intervention theory. METHODOLOGY: The study findings were interpreted using Kumar's six-step approach that enabled systematic evaluation of a theory's appropriateness and alignment with the researcher's paradigm, methodology, and study findings. It also explained how theory informed analysis and elucidated challenges or the development of new models. The feedback intervention theory appraises the discrepancy between actual and desired goals and provides feedback to improve it. RESULTS: Strategic solutions generated from the study findings were coherent with the aspects elucidated in theory, like coping mechanisms, levels of feedback hierarchy, and factors determining the effect of the feedback intervention on performance. Paediatric oncologists suggested integrating palliative care providers in the team innocuously, improving communication between teams, relabelling palliative care as symptom control, and working with a skilled and accessible palliative care team. The paper proposes an infinite loop model developed from the study, which has the potential to foster integrated palliative care through excellent collaboration and continuous feedback. CONCLUSION: Applying feedback intervention theory can bridge the gap between actual and desired practice for integrated cancer palliative care in paediatric oncology.


Assuntos
Oncologistas , Cuidados Paliativos , Pesquisa Qualitativa , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Oncologistas/psicologia , Masculino , Feminino , Neoplasias/terapia , Neoplasias/psicologia , Pediatria/métodos , Retroalimentação , Atitude do Pessoal de Saúde , Encaminhamento e Consulta
2.
Palliat Support Care ; : 1-8, 2024 Feb 29.
Artigo em Inglês | MEDLINE | ID: mdl-38420705

RESUMO

OBJECTIVES: This umbrella review will summarize palliative and end-of-life care practices in peri-intensive care settings by reviewing systematic reviews in intensive care unit (ICU) settings. Evidence suggests that integrating palliative care into ICU management, initiating conversations about care goals, and providing psychological and emotional support can significantly enhance patient and family outcomes. METHODS: The Joanna Briggs Institute (JBI) methodology for umbrella reviews will be followed. The search will be carried out from inception until 30 September 2023 in the following databases: Cochrane Library, SCOPUS, Web of Science, CINAHL Complete, Medline, EMBASE, and PsycINFO. Two reviewers will independently conduct screening, data extraction, and quality assessment, and to resolve conflicts, adding a third reviewer will facilitate the consensus-building process. The quality assessment will be carried out using the JBI Critical Appraisal Checklist. The review findings will be reported per the guidelines outlined in the Preferred Reporting Items for Overviews of Reviews statement. RESULTS: This umbrella review seeks to inform future research and practice in critical care medicine, helping to ensure that end-of-life care interventions are optimized to meet the needs of critically ill patients and their families.

3.
Indian J Crit Care Med ; 28(5): 424-435, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38738199

RESUMO

Background and aim: While intensive care unit (ICU) mortality rates in India are higher when compared to countries with more resources, fewer patients with clinically futile conditions are subjected to limitation of life-sustaining treatments or given access to palliative care. Although a few surveys and audits have been conducted exploring this phenomenon, the qualitative perspectives of ICU physicians regarding end-of-life care (EOLC) and the quality of dying are yet to be explored. Methods: There are 22 eligible consultant-level ICU physicians working in multidisciplinary ICUs were purposively recruited and interviewed. The study data was analyzed using reflexive thematic analysis (RTA) with a critical realist perspective, and the study findings were interpreted using the lens of the semiotic theory that facilitated the development of themes. Results: About four themes were generated. Intensive care unit physicians perceived the quality of dying as respecting patients' and families' choices, fulfilling their needs, providing continued care beyond death, and ensuring family satisfaction. To achieve this, the EOLC process must encompass timely decision-making, communication, treatment guidelines, visitation rights, and trust-building. The contextual challenges were legal concerns, decision-making complexities, cost-related issues, and managing expectations. To improve care, ICU physicians suggested amplifying patient and family voices, building therapeutic relationships, mitigating conflicts, enhancing palliative care services, and training ICU providers in EOLC. Conclusion: Effective management of critically ill patients with life-limiting illnesses in ICUs requires a holistic approach that considers the complex interplay between the EOLC process, its desired outcome, the quality of dying, care context, and the process of meaning-making by ICU physicians. How to cite this article: Iyer S, Sonawane RN, Shah J, Salins N. Semiotics of ICU Physicians' Views on End-of-life Care and Quality of Dying in a Critical Care Setting: A Qualitative Study. Indian J Crit Care Med 2024;28(5):424-435.

4.
Indian J Crit Care Med ; 28(5): 453-460, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38738203

RESUMO

Background: Patients with paraquat poisoning (PP) have a mortality rate comparable to that of advanced malignancies, yet palliative care is seldom considered in these patients. This audit aimed to identify triggers for early palliative care referral in critically ill patients with PP. Methods: Medical records of patients with PP were audited. Predictors of mortality within 48 hours of hospitalization and 24 hours of intensive care unit (ICU) admission were considered as triggers for palliative care referral. Results: Among 108 patients, 84 complete records were analyzed, and 53 out of 84 (63.1%) expired. Within 48 hours after hospitalization, the lowest oxygen partial pressure in arterial blood to a fraction of inspired oxygen [the ratio of partial pressure of oxygen in arterial blood (PaO2) to the fraction of inspiratory oxygen concentration (FiO2) (PaO2/FiO2)] was the independent predictor of mortality, cut-off ≤ 197; the area under the curve (AUC), 0.924; sensitivity, 97%; specificity, 78%; p <0.001; and 95% confidence interval (CI): 0.878-0.978. Kaplan-Meier survival plot showed that the mean survival time of patients with the lowest PaO2/FiO2, ≤197, was 4.64 days vs 17.20 days with PaO2/FiO2 >197 (log-rank p < 0.001). Sequential organ failure assessment (SOFA) score within 24 hours of ICU admission had a cut-off ≥9; AUC, 0.980; p < 0.001; 95% CI: 0.955-1.000; 91% sensitivity; and 90% specificity for mortality prediction. Out of the total of 84 patients with PP analyzed, there were 11 patients admitted to the high dependency units (13.1%) and 73 patients admitted to the ICU (86.9%). Out of the total of 84 patients of PP in whom data was analyzed, 53 (63.1%) patients required ventilator support. All the 53 patients who required ventilator support due to worsening hypoxemia, eventually expired. Conclusion: The lowest PaO2/FiO2 ≤ 197 within 48 hours of hospitalization, SOFA score ≥9 within 24 hours of ICU admission or need for mechanical ventilation are predictors of mortality in PP patients, who might benefit from early palliative care. How to cite this article: Rao S, Maddani SS, Chaudhuri S, Bhatt MT, Karanth S, Damani A, et al. Utility of Clinical Variables for Deciding Palliative Care in Paraquat Poisoning: A Retrospective Study. Indian J Crit Care Med 2024;28(5):453-460.

5.
Indian J Crit Care Med ; 28(3): 200-250, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38477011

RESUMO

End-of-life care (EOLC) exemplifies the joint mission of intensive and palliative care (PC) in their human-centeredness. The explosion of technological advances in medicine must be balanced with the culture of holistic care. Inevitably, it brings together the science and the art of medicine in their full expression. High-quality EOLC in the ICU is grounded in evidence, ethical principles, and professionalism within the framework of the Law. Expert professional statements over the last two decades in India were developed while the law was evolving. Recent landmark Supreme Court judgments have necessitated a review of the clinical pathway for EOLC outlined in the previous statements. Much empirical and interventional evidence has accumulated since the position statement in 2014. This iteration of the joint Indian Society of Critical Care Medicine-Indian Association of Palliative Care (ISCCM-IAPC) Position Statement for EOLC combines contemporary evidence, ethics, and law for decision support by the bedside in Indian ICUs. How to cite this article: Mani RK, Bhatnagar S, Butola S, Gursahani R, Mehta D, Simha S, et al. Indian Society of Critical Care Medicine and Indian Association of Palliative Care Expert Consensus and Position Statements for End-of-life and Palliative Care in the Intensive Care Unit. Indian J Crit Care Med 2024;28(3):200-250.

6.
Support Care Cancer ; 32(1): 31, 2023 Dec 16.
Artigo em Inglês | MEDLINE | ID: mdl-38102525

RESUMO

BACKGROUND: Quality of life (QOL) is impaired in patients with head and neck cancers (HNC) due to illness and treatment-associated morbidity. Although there is evidence from the studies on interventions' role in improving QOL receiving radiation therapy, these are not systematically synthesised. In this scoping review, we searched and synthesised the evidence on interventions to improve the QOL and its impact among patients with HNCs. METHODS: This scoping review was conducted using the framework proposed by Arksey and O'Malley, and the extensions suggested by Levac et al. were incorporated. Two reviewers independently searched four electronic databases using key thesaurus and free-text terms, and the data was extracted, tabulated, synthesised and reported as categories. RESULTS: Seventy-nine papers reported various interventions of diverse nature such as pharmacological, physical, nutritional, complementary and alternative therapies, psychosocial, oral care related, laser and photobiomodulation therapies, rehabilitative, educational, technology-based, surgical, device-related and nurse lead interventions. Most studies reported clinically meaningful impact of interventions on QOL, although the outcome differences were often statistically insignificant. Few studies reported a combination of interventions to address the multidimensional concerns faced by patients with HNCs. None of the studies examined the impact of interventions on QOL among long-term survivors of HNCs. CONCLUSION: As QOL concerns in patients with HNCs are multifaceted, more extensive studies with complex multi-component interventions and robust research designs are warranted.


Assuntos
Terapias Complementares , Neoplasias de Cabeça e Pescoço , Humanos , Qualidade de Vida , Neoplasias de Cabeça e Pescoço/radioterapia , Sobreviventes
7.
J Cancer Educ ; 38(5): 1440-1458, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37648949

RESUMO

General practitioners (GPs) are critical in providing primary palliative care in the community. Apprehensions about managing a dying person at home, difficulties in goals of care discussion, limited resources and lack of palliative care education often hinder end-of-life care provision in the community. This review focused on the end-of-life care training programs accessed by GPs and sought to understand if the training programs' content and mode of delivery aligned with their preferred needs. MEDLINE, EMBASE, CINAHL, and PsycINFO were searched to identify articles published in English between 01 January 1990 and 30 September 2022. Additionally, searches were conducted using SCOPUS, the Web of Science, and the Cochrane database using free texts. The reviewers screened the titles, abstracts, and full text to identify eligible studies and extracted textual data to analyse and generate themes. Out of 5532 citations initially accessed, 17 studies were included in the review. Six themes were generated: knowledge translation, skill development, a change in attitude, self-efficacy, satisfaction, and patient outcomes. The GPs' end-of-life care knowledge, skills, attitude, self-efficacy, and patient outcomes were better when their training had a combination of small-group interactive workshops, trigger case-based reflective learning, mentor-facilitated experiential learning, web-based modules, and peer learning. The synthesis of review findings supports blended learning as a training approach for general the practitioners' end-of-life care education as it facilitates learning and patient outcomes.


Assuntos
Clínicos Gerais , Assistência Terminal , Humanos , Aprendizagem , Aprendizagem Baseada em Problemas , Conhecimento
8.
Palliat Support Care ; : 1-5, 2023 Dec 11.
Artigo em Inglês | MEDLINE | ID: mdl-38073474

RESUMO

OBJECTIVES: To develop and validate an English and Kannada version of the questionnaire to assess awareness and knowledge of advance care planning (ACP) among end-stage kidney disease (ESKD) patients, caregivers, and healthcare providers. METHODS: The questionnaire was developed from the published literature on ACP use in ESKD setting after a literature search. An expert panel consisting of nephrologists, palliative medicine physicians, ESKD patients, and their family caregivers participated in the content validity of the questionnaire using the Delphi process. The study was conducted between August 2021 and July 2022 at a tertiary care hospital in India. A validated questionnaire was administered to eligible 30 ESKD patients, 30 caregivers, and 10 health care professionals. A retest was carried out 1 week after the first administration. RESULTS: The content validity ratio of patient, caregiver, and health care professions questions ranged from 0.6 to 1 and Cronbach's α value was 0.737 to 0.925. The intraclass correlation coefficient values for the test-retest of all three sections of this questionnaire varied from 0.879 to 0.972. SIGNIFICANCE OF RESULTS: The developed questionnaire is a reliable and valid method for assessing the preference and knowledge of ACP in ESKD patients, family caregivers, and kidney care providers both in English and Kannada.

9.
Indian J Crit Care Med ; 27(5): 299-300, 2023 May.
Artigo em Inglês | MEDLINE | ID: mdl-37214113

RESUMO

How to cite this article: Myatra SN, Divatia JV, Salins N. Evaluating Determinants of End-of-life Care Provision in Indian Intensive Care Units. Indian J Crit Care Med 2023;27(5):299-300.

10.
Med J Armed Forces India ; 79(2): 213-219, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36969124

RESUMO

Background: The Worldwide Hospice Palliative Care Alliance has recommended integration of palliative care into primary health care. Diminished capacity to provide palliative care is a barrier for integration. The purpose of this study was to screen for palliative care needs in the community. Methods: A cross-sectional study was conducted in two rural communities of Udupi district. Supportive and Palliative Care Indicators Tool - 4ALL (SPICT-4ALL) was used to identify the palliative care needs. Purposive sampling was used to collect the individual information from the households for identifying the palliative care need. Conditions requiring palliative care and the sociodemographic factors associated with it were explored. Results: Out of 2041 participants, 51.49% were female, and 19.65% were elderly. Less than a quarter of them (23.08%) had at least one chronic illness. Hypertension, diabetes, and ischemic heart disease were commonly found. 4.31% had satisfied the requisite SPICT criteria, which indicated a need for palliative care. Diseases of cardiovascular system followed by dementia and frailty were the most common conditions requiring palliative care. Univariate analysis showed that age, marital status, years of education, occupation, and the presence of morbidities were significantly associated with the need for palliative care. Being unemployed and having one or more morbidities were factors independently associated with requirement of palliative care. Conclusions: The estimated palliative care need in the community survey exceeds the perceived need. Although palliative care is traditionally identified with cancer, the proportion of people with noncancer palliative care needs were significantly higher than cancer palliative care.

11.
Indian J Palliat Care ; 29(4): 368-374, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38058487

RESUMO

General practitioners play a vital role in providing community-based palliative care to patients reaching end of life. In order for GPs to upgrade their skills at end-of-life care delivery, it is imperative that training programs be aligned to their learning needs and preferences. A narrative review was conducted using the electronic databases PubMed, CINAHL, PsycINFO, EMBASE, Scopus, Web of Science, and Cochrane from 01/01/1990 to 31/05/2021. 23 articles (of 10037 searched) were included for the review. Following themes were generated: Value attributed to end-of-life care learning, experience and reflection as a departure point for learning, learning as embedded in the clinical context; autonomy to decide upon their learning needs and learning preferences, learning as a transformative process; and learning as embedded in social interaction and interpretation. Training programs that are aligned to the preferences of GPs will encourage a larger clientele of GPs to access them.

12.
Indian J Palliat Care ; 29(2): 195-199, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37325264

RESUMO

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.

13.
Psychooncology ; 31(3): 532-540, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-34687573

RESUMO

OBJECTIVE: Cancer patients in India prefer full information regarding diagnosis and prognosis, but evidence suggests poor insight. This study aimed to identify the role of health literacy among adult patients living with cancer, their families and health professionals in decision-making and treatment outcomes in India. METHODS: This cross-sectional in-depth study recruited patients, families and clinicians from three centers. Inductive thematic analysis informed a novel conceptual model. RESULTS: We recruited n = 34 cancer patients, n = 33 family members, n = 11 doctors and n = 14 nurses (N = 92). Principle emergent themes were the following: (1) Preferences and dynamics of diagnosis and prognosis disclosure, for example, the dominant preference was for families who held hope for cure to discourage disclosure; clinicians sometimes disclosed in line with perceived ability to pay for treatment. (2) Understanding of disease and its treatment options (etiology, potential trajectory, treatment options), for example, lay understandings of cancer etiology as contamination from outside the home, and reluctance of patients to ask questions of clinicians. (3) Priorities in decision-making, for example, not engaging patients due to fear of patient distress, patients initiated on anticancer treatments without knowledge or consent, pursuing futile treatments. (4) Anxieties over finances and outcomes (disclosure, decision-making, care pathways), for example, clinicians attempting to reduce families pursuing expensive and inappropriate treatment options with patients who have poor insight, catastrophic spending based on poor decisions. CONCLUSION: The novel evidence-based health literacy model offers potential for feasible and acceptable intervention to support families in communication, disclosure and decision-making. This may improve patients' access to informed, appropriate care pathways.


Assuntos
Letramento em Saúde , Neoplasias , Adulto , Comunicação , Estudos Transversais , Tomada de Decisões , Humanos , Índia , Neoplasias/terapia
14.
Curr Oncol Rep ; 24(2): 175-186, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-35061195

RESUMO

PURPOSE OF THIS REVIEW: The purpose of this review is to describe the evolution of palliative care in paediatric oncology, the needs of children and their families in a paediatric oncology setting, palliative care referral practices in paediatric oncology, outcomes of palliative care referral in paediatric oncology and models of palliative care in paediatric oncology. RECENT FINDINGS: Cancer constitutes 5.2% of the palliative care needs in children. Approximately, 90% of children with cancer lives in low and middle-income countries, constituting 84% of the global burden of childhood cancers. Children in low and middle-income countries have low cure rates and high death rates making palliative care relevant in a paediatric oncology setting. Children with cancer experience pain and physical symptoms, low mood, anxiety, and fear. They feel less resilient, experience low self-worth, and have challenges coping with the illness. The families lead very stressful lives, navigating the hospital environment, and dealing with uncertainties of the future. Palliative care referral in children with cancer improves physical symptoms, emotional support, and quality of life. It enables communication between families and health care providers. It improves end-of-life care support to children and their families and facilitates less invasive diagnostic and therapeutic interventions at the end of life. Worldwide children with cancer are infrequently referred to palliative care and referred late in the illness trajectory. Most of the children referred to palliative care receive some form of cancer-directed therapy in their last days. Children in low and low-middle income countries are less likely to access palliative care due to a lack of awareness amongst paediatric oncologists about palliative care and the reduced number of services providing palliative care. A three-tier model is proposed to provide palliative care in paediatric oncology, where most children with palliative care needs are managed by paediatric oncologists and a smaller number with complex physical and psychosocial needs are managed by paediatric palliative care specialists. There are several palliative care models in paediatric oncology practised globally. However, no one model was considered better or superior, and the choice of model depended on the need, preferences identified, and available resources. Children with cancer are sparingly referred to palliative care and referred late and oncologists and haematologists gatekeep the referral process. Knowledge on palliative care referral in paediatric oncology settings might enhance collaboration between paediatric oncology and paediatric palliative care.


Assuntos
Neoplasias , Assistência Terminal , Criança , Humanos , Oncologia , Neoplasias/terapia , Cuidados Paliativos , Qualidade de Vida
15.
BMC Palliat Care ; 21(1): 215, 2022 Dec 02.
Artigo em Inglês | MEDLINE | ID: mdl-36456939

RESUMO

BACKGROUND: Although a significant proportion of children with cancer need palliative care, few are referred or referred late, with oncologists and haematologists gatekeeping the referral process. We aimed to explore the facilitators and barriers to palliative care referral. METHODS: Twenty-two paediatric oncologists and haematologists were purposively recruited and interviewed. Data were analysed using reflexive thematic analysis. Findings were interpreted using the critical realist paradigm. RESULTS: Four themes were generated. 1) Oncologists expressed concern about the competency of palliative care teams. Palliative care often symbolised therapeutic failure and abandonment, which hindered referral. Trustworthy palliative care providers had clinical competence, benevolence, and knowledge of oncology and paediatrics. 2) Making a palliative care referral was associated with stigma, navigating illness-related factors, negative family attitudes and limited resources, impeding palliative care referral. 3) There were benefits to palliative care referral, including symptom management and psychosocial support for patients. However, some could see interactions with the palliative care team as interference hindering future referrals. 4) Suggested strategies for developing an integrated palliative care model include evident collaboration between oncology and palliative care, early referral, rebranding palliative care as symptom control and an accessible, knowledgeable, and proactive palliative care team. CONCLUSION: Presuppositions about palliative care, the task of making a referral, and its cost-benefits influenced referral behaviour. Early association with an efficient rebranded palliative care team might enhance integration.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Pediatria , Humanos , Criança , Cuidados Paliativos , Oncologia , Encaminhamento e Consulta
16.
BMC Palliat Care ; 21(1): 162, 2022 Sep 21.
Artigo em Inglês | MEDLINE | ID: mdl-36127706

RESUMO

BACKGROUND: General practitioners (GPs) play a pivotal role in providing end-of-life care in the community. Although they value end-of-life care, they have apprehensions about providing care in view of the limitations in knowledge and skills in end-of-life care. This review aimed to explore, synthesise, and analyse the views of general practitioners on end-of-life care learning preferences. METHODS: MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, Web of Science, and Cochrane were searched for literature on the views of general practitioners on end-of-life care learning preferences from 01/01/1990 to 31/05/2021. Methodological quality was reported. RESULTS: Of the 10,037 articles identified, 23 were included for the review. Five themes developed from the review. The desire to provide palliative care, as well as self-actualisation needs, relevance to practice, a sense of responsibility, and a therapeutic bond, motivates general practitioners to learn end-of-life care. Some of the learning needs expressed were pain and symptom management, communication skills, and addressing caregiver needs. Experiential learning and pragmatist learning styles were preferred learning styles. They perceived the need for an amicable learning environment in which they could freely express their deficiencies. The review also identified barriers to learning, challenges at personal and professional level, feelings of disempowerment, and conflicts in care. CONCLUSION: GPs' preference for learning about end-of-life care was influenced by the value attributed to learning, context and content, as well as preference for learning styles and the availability of resources. Thus, future trainings must be in alignment with the GPs' learning preferences.


Assuntos
Clínicos Gerais , Assistência Terminal , Educação Médica Continuada , Humanos , Aprendizagem , Cuidados Paliativos
17.
BMC Palliat Care ; 21(1): 101, 2022 Jun 04.
Artigo em Inglês | MEDLINE | ID: mdl-35659229

RESUMO

INTRODUCTION: There is a significant lack of palliative care access and service delivery in the Indian cancer institutes. In this paper, we describe the development, implementation, and evaluation of a palliative care capacity-building program in Indian cancer institutes. METHODS: Participatory action research method was used to develop, implement and evaluate the outcomes of the palliative care capacity-building program. Participants were healthcare practitioners from various cancer institutes in India. Training and education in palliative care, infrastructure for palliative care provision, and opioid availability were identified as key requisites for capacity-building. Researchers developed interventions towards capacity building, which were modified and further developed after each cycle of the capacity-building program. Qualitative content analysis was used to develop an action plan to build capacity. Descriptive statistics were used to measure the outcomes of the action plan. RESULTS: Seventy-three healthcare practitioners from 31 cancer treatment centres in India were purposively recruited between 2016 and 2020. The outcome indicators of the project were defined a priori, and were audited by an independent auditor. The three cycles of the program resulted in the development of palliative care services in 23 of the 31 institutes enrolled in the program. Stand-alone palliative care outpatient services were established in all the 23 centres, with the required infrastructure and manpower being provided by the organization. Morphine availability improved and use increased in these centres, which was an indication of improved pain management skills among the participants. The initiation and continuation of education, training, and advocacy activities in 20 centres suggested that healthcare providers continued to remain engaged with the program even after the cessation of their training cycle. CONCLUSION: This program illustrates how a transformational change at the organizational and individual level can lead to the development of sustained provision of palliative care services in cancer institutes.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Fortalecimento Institucional , Atenção à Saúde , Pesquisa sobre Serviços de Saúde , Humanos , Neoplasias/terapia , Cuidados Paliativos
18.
Indian J Palliat Care ; 28(3): 229-235, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36072244

RESUMO

The rising trend of chronic life-threatening illnesses is accompanied by an exponential increase in serious health-related suffering. Palliative care is known to ameliorate physical and psychosocial suffering and restore quality of life. However, the contemporary challenges of palliative care delivery, such as changing demographics, social isolation, inequity in service delivery, and professionalisation of dying, have prompted many to adopt a public health approach to palliative care delivery. A more decentralised approach in which palliative care is integrated into primary care will ensure that the care is available locally to those who need it and at a cost that they can afford. General practitioners (GPs) play a pivotal role in providing primary palliative care in the community. They ensure that care is provided in alignment with patients' and their families' wishes along the trajectory of the life-threatening illness and at the patient's preferred place. GPs use an interdisciplinary approach by collaborating with specialist palliative care teams and other healthcare professionals. However, they face challenges in providing end-of-life care in the community, which include identification of patients in need of palliative care, interpersonal communication, addressing patients' and caregivers' needs, clarity in roles and responsibilities between GPs and specialist palliative care teams, coordination of service with specialists and lack of confidence in providing palliative care in view of deficiencies in knowledge and skills in palliative care. Multiple training formats and learning styles for GPs in end-of-life care have been explored across studies. The research has yielded mixed results in terms of physician performance and patient outcomes. This calls for more research on GPs' views on end-of-life care learning preferences, as this might inform policy and practice and facilitate future training programs in end-of-life care.

19.
Indian J Palliat Care ; 28(4): 428-433, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36447507

RESUMO

Objectives: Adolescents with cancer experience several psychosocial concerns. Cancer among adolescents contributes to one-fifth of cancers in India. Most of the published empirical literature on adolescents' views about their cancer experience is from high-income countries.The objectives of the study were to explore the experiences of adolescents with cancer in India. Materials and Methods: Twenty-eight adolescents were purposively recruited and participated in prospectively conducted qualitative interviews conducted at the Tata Memorial Hospital, Mumbai, between 2013 and 2015. Interview data were transcribed and analysed using Braun and Clarke's reflexive thematic analysis. Results: Two themes and several subthemes were generated during the analysis. The transition to the new reality of illness was traumatic. It embodied fear about the unknown, disease and symptoms. The experience was isolating and disfigurement further led to peer separation. Inadequate information made the adolescents anxious and worried, and children and parents experienced moments of severe distress. The love and support received from parents, siblings and extended family facilitated positive coping. Peer support was reassuring and enabled them to have a normalising experience. Discovering their inner strength, acceptance of the situation and faith in God made them resilient and hopeful. Conclusion: Adolescents with cancer experience significant emotional concerns, which are often unexplored and unaddressed. An adolescent-specific communication framework and psychosocial programme contextual to the Indian setting may be developed based on the study findings.

20.
Indian J Palliat Care ; 28(1): 51-63, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35673368

RESUMO

Objectives: The Lancet Commission on Global Access to Palliative Care and Pain Relief reported significant levels of health-related suffering globally, with the highest incidence in the low- and middle-income countries. The report describes suffering as health-related when it is associated with illness or injury of any kind and suffering as serious when it cannot be relieved without professional intervention and when it compromises physical, social, spiritual, and/or emotional functioning. This paper describes the preliminary development phase of a tool for screening Serious Health-related Suffering (SHS) at individual patient level, suitable to the healthcare settings in India. The study was conducted by the National Cancer Grid-India, with support from the Indian Association of Palliative Care. Materials and Methods: Domain identification and item generation were conducted according to the recommendations for tool development by the American Psychological Association and World Health Organisation quality of life instrument. The consensus for domain questions and associated items was achieved using Delphi, nominal group technique, expert review, and polling. Results: The Phase-1 study for developing the screening tool for SHS contextualised to resource-limited settings generated a bilevel questionnaire. The initial level assesses and scores the physical, emotional, social, spiritual, and financial domains of health-related suffering. The next level assesses seriousness, through functional limitation and patient's preference. Conclusion: The generation of domains, items, and screening questions for health-related suffering and its seriousness completes the preliminary phase of developing the SHS screening tool applicable to a resource-limited healthcare setting. Field testing of the tool is being conducted as Phase-2 of this study, to validate it in clinical settings.

SELEÇÃO DE REFERÊNCIAS
Detalhe da pesquisa