scholarly journals Protocol for an exploratory, longitudinal single case study of a novel palliative care rehabilitative service

2021 ◽  
Vol 4 ◽  
pp. 131
Author(s):  
Fódhla Ní Chéileachair ◽  
Bridget M. Johnston ◽  
Cathy Payne ◽  
Fiona Cahill ◽  
Lisa Mannion ◽  
...  

Background: Early access to rehabilitation can improve quality of life for those with life-limiting illnesses and is highlighted as a core component of the Adult Palliative Care Services Model of Care for Ireland. Despite this, palliative rehabilitation remains under-utilised and under-developed. In 2020, the Sláintecare Integration Fund provided opportunity to pilot a novel rehabilitative palliative care service, “Palliat Rehab”. This protocol proposes a case study, which aims to advance understanding of the form, content, and delivery of the pilot service. Methods: A prospective, longitudinal, mixed-methods, case study design will be used to describe the service and to explore the experiences of patients, informal carers and clinicians. Additionally, data collection instruments will be tested and the utility of outcome measures will be examined. Data will be collected from documentary, survey, and interview sources. Quantitative data will be analysed using descriptive statistics, including chi-square tests for categorical variables, Mann-Whitney U tests for ordinal data, and t-tests/ ANOVA for continuous data. Qualitative data will be analysed using thematic analysis. Conclusions: New pathways are required to advance service provision to ensure that patients receive the ‘right care, in the right place, at the right time’. The development of ‘‘Palliat Rehab’’ offers opportunity to study an innovative service and consider its potential contribution to the achievement of Sláintecare goals. Investigating the service within its environmental context will lead to a better understanding of ‘how’ and ‘why’ things happen. Findings will be of value in assessing whether there is evidence that supports the service, and will be used to inform efforts to further develop and tailor the intervention.

2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i12-i42
Author(s):  
D Hibbert

Abstract   NACEL is a national comparative audit of the quality and outcomes of care experienced by the dying person and those important to them during the final admission in acute and community hospitals in England and Wales. Mental health inpatient providers participated in the first round but excluded from the second round. NACEL round two, undertaken during 2019/20, comprised: Data was collected between June and October 2019. 175 trusts in England and 8 Welsh organisations took part in at least one element of NACEL (97% of eligible organisations). Key findings include Recognising the possibility of imminent death: The possibility that the patient may die was documented in 88% of cases. The median time from recognition of dying to death was 41 hours (36 hours in the first round). Individual plan of care: 71% of patients, where it had been recognised that the patient was dying (Category 1 deaths), had an individualised end of life care plan. Of the patients who did not have an individualised plan of care, in 45% of these cases, the time from recognition of dying to death was more than 24 hours. Families’ and others’ experience of care: 80% of Quality Survey respondents rated the quality of care delivered to the patient as outstanding/excellent/good and 75% rated the care provided to families/others as outstanding/excellent/good. However, one-fifth of responses reported that the families’/others’ needs were not asked about. Individual plan of care: 80% of Quality Survey respondents believed that hospital was the “right” place to die; however, 20% reported there was a lack of peace and privacy. Workforce Most hospitals (99%) have access to a specialist palliative care service. 36% of hospitals have a face-to-face specialist palliative care service (doctor and/or nurse) available 8 hours a day, 7 days a week. NACEL round three will start in 2021.


2005 ◽  
Vol 11 (3) ◽  
pp. 19
Author(s):  
Kate Senior ◽  
David Perkins

This paper identifies the challenges in researching the impact of a rural palliative care service on its patients, carers and providers in the context of the National Palliative Care Strategy. It describes the use of an anthropological method to overcome problems of acceptability and respondent burden and to enable the elaboration of meaning and valuation by participants. It uses the Griffith Area Palliative Care Service as a case study to illustrate the problems of such research and the value of the anthropological method over more conventional research and evaluation approaches. It makes recommendations about how to assess the outcomes of services such as palliative care where the focus of care is complex, individual and family, and the outcomes go far beyond what can be measured with the medical model.


Children ◽  
2021 ◽  
Vol 8 (10) ◽  
pp. 905
Author(s):  
Sophie Pelke ◽  
Julia Wager ◽  
Benedikt B. Claus ◽  
Kathrin Stening ◽  
Boris Zernikow ◽  
...  

Outcome measurement in pediatric palliative care (PPC) is receiving increasing attention. The FACETS-OF-PPC, a multidimensional outcome measure for children with severe neurological impairment, has been developed and partly validated. This study aimed to conclude the validity of the German version of the FACETS-OF-PPC. A multicenter prospective study with two points of measurement has been conducted, employing confirmatory factor analyses, reliability analyses, and analyses to evaluate the tool’s sensitivity to change. Overall, 25 inpatient and outpatient teams throughout Germany recruited N = 227 parents of affected children and N = 238 professional caregivers. Participants filled out the FACETS-OF-PPC on the admission of a child to a palliative care service and at discharge from inpatient settings or two months after admission to outpatient services. The analyses revealed the questionnaire needing further adaption. Now, 17 of the original 34 items contribute to the construction of the questionnaire scales. The other items remain part of the questionnaire and may be evaluated descriptively. Furthermore, the FACETS-OF-PPC has moderate to appropriate internal consistency and is sensitive to change. Creating an outcome measure with good psychometric properties for the vulnerable population of children with severe neurological impairment appears extremely difficult. Considering these challenges, the FACETS-OF-PPC demonstrates adequate psychometric properties.


2021 ◽  
pp. 026921632110229
Author(s):  
Sabrina Bajwah ◽  
Polly Edmonds ◽  
Emel Yorganci ◽  
Rosemary Chester ◽  
Kirsty Russell ◽  
...  

Background: People from ethnic minority groups and deprived socioeconomic backgrounds have worse outcomes from COVID-19. Aim: To examine associations between ethnicity and deprivation with timing of palliative care referral for inpatients with COVID-19. Design: Service evaluation of consecutive patients with COVID-19 referred to palliative care. Sociodemographic (including age, sex, Index of Multiple Deprivation, ethnicity coded as White/non-White) and clinical variables were described. The primary outcome was timing of referral to palliative care. Associations between ethnicity and socioeconomic deprivation with the primary outcome were explored using multivariable regression. Setting/participants: Patients with COVID-19 referred to a hospital palliative care service across two London hospitals February–May 2020. Results: A total of 334 patients were included. 119 (36%) were from a non-White ethnic group; most commonly Black British (77, 23%) and Asian British (26, 8%). A longer time between admission and palliative care referral was associated with male gender (IRR 1.23, 95% CI 1.14–1.34) and lower levels of socioeconomic deprivation (IRR 1.61, 95% CI 1.36–1.90) but not ethnicity (IRR = 0.96, 95% CI 0.87–1.06). Conclusions: This large service evaluation showed no evidence that patients from ethnic minority or more deprived socioeconomic groups had longer time to palliative care referral. Ongoing data monitoring is essential for equitable service delivery.


Pharmacy ◽  
2020 ◽  
Vol 8 (4) ◽  
pp. 240
Author(s):  
José António Ferraz Gonçalves ◽  
Filipa Sousa ◽  
Lucy Alves ◽  
Patrícia Liu ◽  
Sara Coelho

Alfentanil is used for chronic pain relief in palliative care. However, there is a dearth of data on its use. For this reason, a decision was made to review the use of alfentanil in palliative care. Retrospective study was carried out in a palliative care service. The files of patients who received alfentanil as an intravenous or subcutaneous continuous infusion for pain relief, between January 2018 and April 2019. In total, 111 patients received alfentanil out of 113 admissions. Of them, 56 were male, and the median age was 70 years. The median number of days on alfentanil was 6 (range 1 to 129). The most frequent primary reasons for switching to alfentanil was uncontrolled pain in 52 (46%) patients and renal impairment in 24 (21%) patients. The median 24-h initial dose of alfentanil was 4 mg (1–20), and the median final 24-h dose of alfentanil was 5 mg (1–60), (p < 0.001). The initial 24-h median number of rescue doses was 2 (0–8), and the final median number of rescue doses was 1 (0 to 8), (p = 0.025). In 56 patients who were on alfentanil for at least 7 days, the dose decreased in 3 (5%), remained stable in 10 (18%) and increased in 43 (77%). The patient on alfentanil for 129 days maintained the same dose throughout that period. Alfentanil can be a useful second-line opioid. The induction of tolerance does not seem to be particularly rapid with alfentanil.


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