Palliative Care Needs of People Living in a Newly Established Informal Settlement

2018 ◽  
Vol 20 (2) ◽  
Author(s):  
Martjie De Villiers ◽  
Johanna Elizabeth Maree ◽  
Corrien Van Belkum
Keyword(s):  
Palliative Care ◽  
Informal Settlement ◽  
Palliative Care Service ◽  
Physical Symptoms ◽  
The Body ◽  
Care Needs ◽  
Care Clinic ◽  
Medical Diagnoses ◽  
Common Diagnosis ◽  
Palliative Care Needs

Evidence-based guidance for the delivery of palliative care in Africa is rare. Identifying the palliative care needs of this community could contribute evidence to guide the services provided, and could add to the body of knowledge of palliative care in Africa. Using a retrospective chart review research method, the researchers aimed to describe the palliative care needs of people using a nurse-led palliative care service situated in a newly established, underserved, informal settlement in Tshwane, Gauteng, South Africa. A quantitative inductive content analysis method was used to analyse the data. The sample realised at 48 (n = 48). The ages of patients ranged from 21 to 78 with the median age 47. Nearly half (45.9%) of the patients were functionally illiterate. The records reflected 85 different medical diagnoses and some patients suffered more than one illness. The most common diagnosis was HIV/AIDS (54.2%). Furthermore, records revealed 379 health problems, ranging from 1 to 17 per patient, with an average of 8.1. Most problems were physical symptoms (50.3%; n = 195), while 38.8 per cent (n = 147) were psychosocial problems and 9.8 per cent (n = 37) were spiritual problems. The need for pain relief (89.6%; n = 43) was the greatest, followed by the need for emotional support. Patients suffering from various medical diagnoses used the services of the palliative care clinic. Patients’ care needs revolved around relief from total pain. Therefore, nurses should become aware of the suffering of palliative patients living in resource-poor communities, and through meticulous assessment, identify their main care needs.

Screening for Palliative Care Needs: Pilot Data From German Comprehensive Cancer Centers

2021 ◽  
pp. OP.20.00698
Author(s):  
Carmen Roch ◽  
Maria Heckel ◽  
Birgitt van Oorschot ◽  
Bernd Alt-Epping ◽  
Mitra Tewes
Keyword(s):  
Palliative Care ◽  
Human Resources ◽  
Structural Characteristics ◽  
Physical Symptoms ◽  
Screening Tools ◽  
Current Status ◽  
Care Needs ◽  
Cancer Centers ◽  
Comprehensive Cancer Centers ◽  
Palliative Care Needs

PURPOSE: Guidelines recommend several screening tools to identify patients with complex palliative needs. This diversity and lack of structural recommendations offer a wide scope for implementing screening. Against this background, the current status of implementation at German Comprehensive Cancer Centers (CCCs) funded by the German Cancer Aid has not yet been investigated. METHODS: e-mail survey of the 17 hospital sites of the 13 CCCs. The questionnaire asked for structural characteristics of the centers as well as preconditions of the screening process. Structurally established screening procedures (one item) and standardized workflows, modes of performance, screening tools (four items), modes of training how to screen, and responsibilities (two items) were assessed. RESULTS: In a 2-month period, 15 hospital sites responded; seven hospital sites conducted a palliative care needs (PCN) screening. Only one hospital site carried out PCN screening in almost all oncology departments, but only with the distress thermometer. Other hospital sites determined palliative needs by assessing physical symptoms using the Integrated Palliative Care Outcome Scale or the Minimal Documentation System, and two hospital sites combined tools to determine both physical and psychological stress. The type of screening varied from paper-pencil–based to tablet computer–based documentation. The main barriers to implementation were identified as a lack of human resources and a lack of structural conditions. CONCLUSION: There is a lack of consensus among palliative care specialists and oncologists in the CCCs supported by the German Cancer Aid in PCN screening as well as of structured guidelines and the professional association. Structural requirements should be adapted to these needs, which include both technical and human resources. A combined psycho-oncologic and palliative care screening might help to formulate best practice recommendations.

scholarly journals Hospital patients’ perspectives on what is essential to enable optimal palliative care: A qualitative study

2020 ◽  
Vol 34 (10) ◽  
pp. 1402-1415 ◽  
Author(s):  
Claudia Virdun ◽  
Tim Luckett ◽  
Karl Lorenz ◽  
Patricia M Davidson ◽  
Jane Phillips
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Family Involvement ◽  
Inpatient Care ◽  
Sense Of Self ◽  
The Body ◽  
Structured Interviews ◽  
Care Needs ◽  
Number Of Patients ◽  
Palliative Care Needs

Background: The majority of expected deaths in high income countries occur in hospital where optimal palliative care cannot be assured. In addition, a large number of patients with palliative care needs receive inpatient care in their last year of life. International research has identified domains of inpatient care that patients and carers perceive to be important, but concrete examples of how these might be operationalised are scarce, and few studies conducted in the southern hemisphere. Aim: To seek the perspectives of Australian patients living with palliative care needs about their recent hospitalisation experiences to determine the relevance of domains noted internationally to be important for optimal inpatient palliative care and how these can be operationalised. Design: An exploratory qualitative study using semi-structured interviews. Setting/participants: Participants were recruited through five hospitals in New South Wales, Australia. Results: Twenty-one participants took part. Results confirmed and added depth of understanding to domains previously identified as important for optimal hospital palliative care, including: Effective communication and shared decision making; Expert care; Adequate environment for care; Family involvement in care provision; Financial affairs; Maintenance of sense of self/identity; Minimising burden; Respectful and compassionate care; Trust and confidence in clinicians and Maintenance of patient safety. Two additional domains were noted to be important: Nutritional needs; and Access to medical and nursing specialists. Conclusions: Taking a person-centred focus has provided a deeper understanding of how to strengthen inpatient palliative care practices. Future work is needed to translate the body of evidence on patient priorities into policy reforms and practice points.

scholarly journals Family Physicians’ Perspectives on Their Role in Palliative Care: A Double Focus Group in Portugal

2021 ◽  
Vol 18 (14) ◽  
pp. 7282
Author(s):  
Carlos Seiça Cardoso ◽  
Filipe Prazeres ◽  
Beatriz Xavier ◽  
Bárbara Gomes
Keyword(s):  
Palliative Care ◽  
Focus Group ◽  
Training Programs ◽  
Family Physicians ◽  
Holistic Approach ◽  
Physical Symptoms ◽  
Care Needs ◽  
Focus Group Study ◽  
Organizational Barriers ◽  
Palliative Care Needs

Background: Aggravated by the COVID-19 pandemic, the provision of palliative care for patients with palliative care needs emerges as a necessity more than ever. Most are managed in primary care by their family physicians (FP). This study aimed to understand the perspectives of specialist and trainee FPs about their role in palliative care. Methods: we conducted a double focus-group study consisting of two separate online focus-groups, one with FP specialists (n = 9) and one with FP trainees (n = 10). Results: FPs already gather two fundamental skills for the provision of palliative care: the capacity to identify patients’ needs beyond physical symptoms and the recognition that the patient belongs to a familiar, psychosocial, and even spiritual environment. They perceive their role in palliative care to be four-fold: early identification of patients with palliative care needs, initial treatment, symptom management, and patient advocacy. Participants recognized the need for palliative care training and provided suggestions for training programs. Conclusion: FPs share a holistic approach and identify multiple roles they can play in palliative care, from screening to care and advocacy. Organizational barriers must be addressed. Short training programs that combine theory, practice, and experiential learning may further the potential for FPs to contribute to palliative care.

scholarly journals Palliative care needs of patients living with end-stage kidney disease not treated with renal replacement therapy: An exploratory qualitative study from Blantyre, Malawi

2017 ◽  
Vol 9 (1) ◽  
Author(s):  
Maya J. Bates ◽  
Alex Chitani ◽  
Gavin Dreyer
Keyword(s):  
Palliative Care ◽  
Renal Replacement Therapy ◽  
Kidney Disease ◽  
Qualitative Study ◽  
Replacement Therapy ◽  
Physical Symptoms ◽  
End Stage Kidney Disease ◽  
Care Needs ◽  
End Stage ◽  
Palliative Care Needs

Background: The burden of end-stage kidney disease (ESKD) in sub-Saharan Africa is increasing rapidly but the palliative care needs of patients living with ESKD are not well described. Resource limitations at both health system and patient level act as major barriers to patients receiving renal replacement therapy (RRT) in the form of dialysis. We undertook an exploratory qualitative study to describe the palliative care needs of patients with ESKD who were not receiving RRT, at a government teaching hospital in Blantyre, Malawi.Methods: A qualitative, explorative and descriptive design was used. Study participants were adults aged > 18 years with an estimated glomerular filtration rate < 15 ml/min on two separate occasions, three months apart, who either chose not to have or were not deemed suitable for RRT. Data were collected by means of semi-structured interviews.Results: In October and November 2013, interviews were conducted with 10 adults (7 women with median age of 60.5 years). All were hypertensive and four were on treatment for HIV. Four themes emerged from the data: changes in functional status because of physical symptoms, financial challenges impacting hospital care, loss of role within the family and the importance of spiritual and cultural beliefs.Conclusion: This study reports on four thematic areas which warrant further quantitative and qualitative studies both in Malawi and other low-resource settings, where a growing number of patients with ESKD unable to access RRT will require palliative care in the coming years.

scholarly journals Co-Design of an Evidenced Informed Service Model of Integrated Palliative Care for Persons Living with Severe Mental Illness: A Qualitative Exploratory Study

Healthcare ◽  
2021 ◽  
Vol 9 (12) ◽  
pp. 1710
Author(s):  
Marianne Tinkler ◽  
Joanne Reid ◽  
Kevin Brazil
Keyword(s):  
Mental Health ◽  
Mental Illness ◽  
Palliative Care ◽  
Severe Mental Illness ◽  
Palliative Care Service ◽  
Current Evidence ◽  
Study Phase ◽  
Service Model ◽  
Care Needs ◽  
Palliative Care Needs

Background: Globally, close to one billion people are living with a mental health disorder, and it is one of the most neglected areas in Public Health. People with severe mental illness have greater mortality risk than the general population, experience health care inequalities throughout life and represent a vulnerable, under-served and under-treated population, who have been overlooked in health inequality research to date. There is currently a dearth of evidence in relation to understanding the palliative care needs of people with severe mental illness and how future care delivery can be designed to both recognise and respond to those needs. This study aims to co-design an evidenced informed service model of integrated palliative care for persons living with a severe mental illness. Methods: This qualitative sequential study underpinned by interpretivism will have six phases. An expert reference group will be established in Phase 1, to inform all stages of this study. Phase 2 will include a systematic literature review to synthesise current evidence in relation to palliative care service provision for people with severe mental illness. In Phase 3, qualitative interviews will be undertaken with both, patients who have a severe mental illness and in receipt of palliative care (n = 13), and bereaved caregivers of people who have died 6–18 months previously with a diagnosis of severe mental illness (n = 13), across two recruitment sties in the United Kingdom. Focus groups (n = 4) with both mental health and palliative care multidisciplinary staff will be undertaken across the two recruitment sites in Phase 4. Phase 5 will involve the co-design of a service model of integrated palliative care for persons living with severe mental illness. Phase 6 will develop practice recommendations for this client cohort. Discussion: Palliative care needs to be available at all levels of care systems; it is estimated that, globally, only 14% of patients who need palliative care receive it. Reducing inequalities experienced by people with severe mental illness is embedded in the National Health Service Long Term Plan. Internationally, the gap between those with a mental illness needing care and those with access to care remains considerable. Future policy and practice will benefit from a better understanding of the needs of this client cohort and the development of a co-designed integrated care pathway to facilitate timely access to palliative care for people with a severe mental illness.

Palliative care in the emergency department

2015 ◽  
Author(s):  
Paul L. DeSandre ◽  
Karen May
Keyword(s):  
Emergency Department ◽  
Palliative Care ◽  
Rapid Assessment ◽  
Physical Symptoms ◽  
Care Needs ◽  
Advanced Illness ◽  
Complex Needs ◽  
Life Threatening ◽  
Access To Medical Care ◽  
Palliative Care Needs

The emergency department provides immediate access to medical care for patients and families in crisis. As the proportion of elderly in our populations increases, complications related to advanced illness will likely drive increasing numbers of patients with palliative care needs into emergency departments. In addition to immediately life-threatening situations, severe physical symptoms, psychological distress, social upheaval, or even an unrecognized spiritual crisis near death can overwhelm patients or their caregivers, who come to the emergency department hoping for relief from their suffering. Emergency clinicians must rapidly assess these complex needs while negotiating interventions with effective and efficient communications. This chapter addresses several of these essential clinician skills for effective primary palliative care in the emergency department. These include rapid assessment of patients with palliative care needs, titration of opioids for pain emergencies, efficiently establishing goals of care, skilful and empathic death disclosure, and a structured approach to involving family presence during cardiopulmonary resuscitation.

scholarly journals The desire to hasten death in advanced cancer patients at a Mexican palliative care service

Salud Mental ◽  
2019 ◽  
Vol 42 (3) ◽  
pp. 103-109 ◽  
Author(s):  
Oscar Rodríguez-Mayoral ◽  
Leticia Ascencio-Huertas ◽  
Emma Verástegui ◽  
Marvin O. Delgado-Guay ◽  
Silvia Allende-Pérez
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Assisted Suicide ◽  
Palliative Care Service ◽  
Physical Symptoms ◽  
Advanced Cancer Patients ◽  
Care Clinic ◽  
Factors Associated ◽  
Cancer Multiple

Introduction. The desire to hasten death (DHD) might be present in patients with advanced cancer. Multiple distressing physical and psychosocial symptoms may be related to it. There is limited literature about the characteristics of these patients in México. Objective. To describe the prevalence and factors associated with DHD in advanced cancer patients evaluated by a palliative care psychiatrist. Method. We conducted a cross-sectional study, including all patients referred to psychiatric assessment at the Servicio de Cuidados Paliativos of the Instituto Nacional de Cancerología in Mexico City, from January to December 2016. DHD was defined as the presence of death ideas, suicidal ideation, and/or request for euthanasia or medically assisted suicide. Patients with delirium, dementia, psychosis, or uncontrolled physical symptoms were excluded. Results. Sixty-four patients were included in the study. Most of them were women (59%); the mean age was 49 years old (SD = 16). Of them, 64% met criteria for a major depressive disorder, 64% for generalized anxiety disorder and/or panic disorder, and 11% for substance use disorders. 44% expressed DHD. In a multivariate regression analysis predicting DHD, only one factor emerged: clinical depression (OR = 13.5, p = .002, 95% CI [02.562, 71.726]). Discussion and conclusion. The desire to hasten death is a frequent issue for the patients evaluated at the psychiatric palliative care clinic. Depression and other distressing psychiatric pathologies were associated with DHD. Interdisciplinary interventions are needed to treat DHD. More research is warranted in order to understand the factors associated with the expression of DHD.

Palliative care and haematology

2019 ◽  
pp. 209-236
Keyword(s):  
Palliative Care ◽  
The Body ◽  
Comprehensive Care ◽  
Systemic Diseases ◽  
Haematological Malignancies ◽  
Care Needs ◽  
The Core ◽  
Advanced Stages ◽  
The Common ◽  
Palliative Care Needs

In their advanced stages, progressive disease of any organ finds inroads into the core functions of the body, disrupting it in multifarious ways. Haematological function, the most fundamental of all, is one of the earliest to be affected, irrespective of the organ of origin of the disease. The impairment can reach proportions that endanger survival. This chapter depicts the common concerns affecting the haematological system of patients with advanced systemic diseases It provides an overview of various symptomatic presentations of haematological system dysfunctions and their management, in patients with palliative care needs. We include an overview of the palliative care needs, and opportunities and challenges in incorporating palliative care within the comprehensive care of patients with haematological malignancies

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