scholarly journals The palliative care needs of people severely affected by neurodegenerative disorders: A qualitative study

2015 ◽  
Vol 23 (6) ◽  
pp. 331-342 ◽  
Author(s):  
S. Veronese ◽  
G. Gallo ◽  
A. Valle ◽  
C. Cugno ◽  
A. Chiò ◽  
...  
2019 ◽  
Vol 57 (2) ◽  
pp. 510-511
Author(s):  
Sandhya Mudumbi ◽  
Macy Stockdill ◽  
Nicholas Hoppmann ◽  
James Dionne-Odom ◽  
Brendan McGuire ◽  
...  

2013 ◽  
Vol 27 (9) ◽  
pp. 869-876 ◽  
Author(s):  
Sabrina Bajwah ◽  
Irene J Higginson ◽  
Joy R Ross ◽  
Athol U Wells ◽  
Surinder S Birring ◽  
...  

2020 ◽  
Vol 34 (10) ◽  
pp. 1402-1415 ◽  
Author(s):  
Claudia Virdun ◽  
Tim Luckett ◽  
Karl Lorenz ◽  
Patricia M Davidson ◽  
Jane Phillips

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.


Heart & Lung ◽  
2017 ◽  
Vol 46 (1) ◽  
pp. 24-29 ◽  
Author(s):  
Kathleen Oare Lindell ◽  
Dio Kavalieratos ◽  
Kevin F. Gibson ◽  
Laura Tycon ◽  
Margaret Rosenzweig

Author(s):  
Maya J. Bates ◽  
Alex Chitani ◽  
Gavin Dreyer

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.


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