Legacy perceptions and interventions for adults and children receiving palliative care: A systematic review

2021 ◽  
pp. 026921632198956
Author(s):  
Jessika C Boles ◽  
Maile T Jones
Keyword(s):  
Palliative Care ◽  
Mixed Methods ◽  
Pediatric Patients ◽  
Continuing Bonds ◽  
Future Research ◽  
Care Recipients ◽  
Mixed Studies Review ◽  
Adults And Children ◽  
Assess Quality ◽  
Operational Concept

Background: Legacy has been invoked as a means for strengthening human attachments, continuing bonds, and ensuring that individuals will be remembered; however, little is known about the spectrum of approaches to, outcomes associated with, and best practices for legacy interventions. Aim: To systematically review research on legacy perceptions and interventions in pediatric and adult palliative care recipients. Design: A systematic mixed studies review synthesizing quantitative, qualitative, and mixed-methods study findings using PRISMA guidelines. Data sources: PubMed, PsycINFO, and CINAHL databases were searched on October 1, 2020. GRADE criteria were used to assess quality of quantitative reports, and the Johns Hopkins Evidence Level and Quality Guide was used to rate qualitative, mixed methods, and review articles. Data were synthesized using integrative thematic analysis. Results: The 67 studies reviewed describe a variety of legacy perceptions and interventions with adult and pediatric patients receiving palliative care. Statistically significant improvements in various dimensions of wellbeing are documented, with significant reduction in incidence and symptoms of depression in adults. Studies highlight the utility, feasibility, and perceived benefits of legacy interventions according to adult patients and their caregivers, and parents/caregivers of pediatric patients. Conclusions: Though future research with high-quality, experimental designs is needed, the positive outcomes associated with legacy interventions are documented in adult patient populations; additionally, the application of legacy interventions for children with serious illnesses receiving palliative care is reasonable based on the existing body of evidence. A consistent and operational concept of legacy is still needed for future research and practice.

scholarly journals Perseverance with technology-facilitated home-based upper limb practice after stroke: a systematic mixed studies review

2021 ◽  
Vol 18 (1) ◽  
Author(s):  
Bridee A. Neibling ◽  
Sarah M. Jackson ◽  
Kathryn S. Hayward ◽  
Ruth N. Barker
Keyword(s):  
Mixed Methods ◽  
Upper Limb ◽  
Stroke Survivors ◽  
Full Potential ◽  
Design Strategies ◽  
Home Based ◽  
Mixed Studies Review ◽  
Assess Quality ◽  
Surrogate Measures ◽  
Systematic Mixed Studies Review

Abstract Background Technology is being increasingly investigated as an option to allow stroke survivors to exploit their full potential for recovery by facilitating home-based upper limb practice. This review seeks to explore the factors that influence perseverance with technology-facilitated home-based upper limb practice after stroke. Methods A systematic mixed studies review with sequential exploratory synthesis was undertaken. Studies investigating adult stroke survivors with upper limb disability undertaking technology-facilitated home-based upper limb practice administered ≥ 3 times/week over a period of ≥ 4 weeks were included. Qualitative outcomes were stroke survivors’ and family members’ perceptions of their experience utilising technology to facilitate home-based upper limb practice. Quantitative outcomes were adherence and dropouts, as surrogate measures of perseverance. The Mixed Methods Appraisal Tool was used to assess quality of included studies. Results Forty-two studies were included. Six studies were qualitative and of high quality; 28 studies were quantitative and eight were mixed methods studies, all moderate to low quality. A conceptual framework of perseverance with three stages was formed: (1) getting in the game; (2) sticking with it, and; (3) continuing or moving on. Conditions perceived to influence perseverance, and factors mediating these conditions were identified at each stage. Adherence with prescribed dose ranged from 13 to 140%. Participants were found to be less likely to adhere when prescribed sessions were more frequent (6–7 days/week) or of longer duration (≥ 12 weeks). Conclusion From the mixed methods findings, we propose a framework for perseverance with technology-facilitated home-based upper limb practice. The framework offers opportunities for clinicians and researchers to design strategies targeting factors that influence perseverance with practice, in both the clinical prescription of practice and technology design. To confirm the clinical utility of this framework, further research is required to explore perseverance and the factors influencing perseverance. Registration: PROSPERO CRD42017072799—https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=72799

scholarly journals Effectiveness of palliative care including physiotherapy in hiv patients a review of the literature

2007 ◽  
Vol 63 (2) ◽  
Author(s):  
J. Uwimana ◽  
Q Louw
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Behavioural Therapy ◽  
Sub Saharan Africa ◽  
Future Research ◽  
Aids Epidemic ◽  
Sub Saharan ◽  
Assess Quality ◽  
Hiv Aids

It is estimated that 41 million people throughout the world are living with HIV/AIDS and of these 39 million are in sub-Saharan Africa(UNAIDS 2004).  The HIV/AIDS epidemic is devastating the African continent.In Africa poorly resourced health care infrastructure further impairs the quality of life in HIV sufferers. Palliative care is an approach that aims to improve the quality of life of people living with threatening diseases such as cancer and HIV/AIDS. This review aimed to determine the efficacy of palliative care. Complementary therapies such as Cognitive Behavioural Therapy, peer/counselling group therapy, massage  therapy, and exercise therapy constitute palliative care. Seventeen articles published in peer reviewed journals during the period 1990-2005 were reviewed. The findings of our review demonstrate that there are indications that palliative care can be effective in improving the quality of life in patients with life threatening diseases such HIV/AIDS. Research in this field is complicated by the heterogeneity of study samples, difficulty in patient recruitment, and death before the end of the intervention period. Future research in this area should aim to include larger study samples, using valid tools to assess quality of life and to employ qualitative methods in studies to assess the effectiveness of palliative care.

scholarly journals Examining the course of transitions from hospital to home-based palliative care: A mixed methods study

2021 ◽  
pp. 026921632110236
Author(s):  
Stephanie Saunders ◽  
Marianne E Weiss ◽  
Chris Meaney ◽  
Tieghan Killackey ◽  
Jaymie Varenbut ◽  
...  
Keyword(s):  
Palliative Care ◽  
Mixed Methods ◽  
Mixed Methods Study ◽  
Future Research ◽  
Healthcare Needs ◽  
Palliative Care Consultation ◽  
Home Based ◽  
Patient Reported ◽  
Discharge Readiness ◽  
Hospital To Home

Background: Hospital-to-home transitions in palliative care are fraught with challenges. To assess transitions researchers have used patient reported outcome measures and qualitative data to give unique insights into a phenomenon. Few measures examine care setting transitions in palliative care, yet domains identified in other populations are likely relevant for patients receiving palliative care. Aim: Gain insight into how patients experience three domains, discharge readiness, transition quality, and discharge-coping, during hospital-to-home transitions. Design: Longitudinal, convergent parallel mixed methods study design with two data collection visits: in-hospital before and 3–4 weeks after discharge. Participants completed scales assessing discharge readiness, transition quality, and post discharge-coping. A qualitative interview was conducted at both visits. Data were analyzed separately and integrated using a merged transformative methodology, allowing us to compare and contrast the data. Setting and participants: Study was set in two tertiary hospitals in Toronto, Canada. Adult inpatients ( n = 25) and their caregivers ( n = 14) were eligible if they received a palliative care consultation and transitioned to home-based palliative care. Results: Results were organized aligning with the scales; finding low discharge readiness (5.8; IQR: 1.9), moderate transition quality (66.7; IQR: 33.33), and poor discharge-coping (5.0; IQR: 2.6), respectively. Positive transitions involved feeling well supported, managing medications, feeling well, and having healthcare needs met. Challenges in transitions were feeling unwell, confusion over medications, unclear healthcare responsibilities, and emotional distress. Conclusions: We identified aspects of these three domains that may be targeted to improve transitions through intervention development. Identified discrepancies between the data types should be considered for future research exploration.

scholarly journals Opioid-Induced Respiratory Depression in Pediatric Palliative Care Patients with Severe Neurological Impairment—A Scoping Literature Review and Case Reports

Children ◽  
2020 ◽  
Vol 7 (12) ◽  
pp. 312
Author(s):  
Maximilian David Mauritz ◽  
Carola Hasan ◽  
Larissa Alice Dreier ◽  
Pia Schmidt ◽  
Boris Zernikow
Keyword(s):  
Risk Factors ◽  
Palliative Care ◽  
Young Adults ◽  
Scoping Review ◽  
Pediatric Patients ◽  
Case Reports ◽  
Neurological Impairment ◽  
Opioid Therapy ◽  
Pediatric Palliative Care ◽  
Severe Neurological Impairment

Pediatric Palliative Care (PPC) addresses children, adolescents, and young adults with a broad spectrum of underlying diseases. A substantial proportion of these patients have irreversible conditions accompanied by Severe Neurological Impairment (SNI). For the treatment of pain and dyspnea, strong opioids are widely used in PPC. Nonetheless, there is considerable uncertainty regarding the opioid-related side effects in pediatric patients with SNI, particularly concerning Opioid-Induced Respiratory Depression (OIRD). Research on pain and OIRD in pediatric patients with SNI is limited. Using scoping review methodology, we performed a systematic literature search for OIRD in pediatric patients with SNI. Out of n = 521 identified articles, n = 6 studies were included in the review. Most studies examined the effects of short-term intravenous opioid therapy. The incidence of OIRD varied between 0.13% and 4.6%; besides SNI, comorbidities, and polypharmacy were the most relevant risk factors. Additionally, three clinical cases of OIRD in PPC patients receiving oral or transdermal opioids are presented and discussed. The case reports indicate that the risk factors identified in the scoping review also apply to adolescents and young adults with SNI receiving low-dose oral or transdermal opioid therapy. However, the risk of OIRD should never be a barrier to adequate symptom relief. We recommend careful consideration and systematic observation of opioid therapy in this population of patients.

scholarly journals Paediatric palliative screening scale as a useful tool for clinicians’ assessment of palliative care needs of pediatric patients: a retrospective cohort study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
In Gyu Song ◽  
Seung Yeon Kwon ◽  
Yoon Jung Chang ◽  
Min Sun Kim ◽  
Sung Hoon Jeong ◽  
...  
Keyword(s):  
Palliative Care ◽  
Retrospective Cohort ◽  
Pediatric Patients ◽  
Palliative Care Team ◽  
Pediatric Palliative Care ◽  
Care Needs ◽  
Palliative Care Teams ◽  
Primary Care Clinicians ◽  
Palliative Care Needs ◽  
Screening Scale

Abstract Background Although the importance of palliative care in pediatric patients has been emphasized, many health care providers have difficulty determining when patients should be referred to the palliative care team. The Paediatric Palliative Screening Scale (PaPaS) was developed as a tool for screening pediatric patients for palliative care needs. The study aimed to evaluate the PaPaS as a reliable tool for primary care clinicians unfamiliar with palliative care. Methods This was a retrospective cohort study of patients referred to the pediatric palliative care teams in two tertiary hospitals in the Republic of Korea between July 2018 and October 2019. Results The primary clinical and pediatric palliative care teams assessed the PaPaS scores of 109 patients, and both teams reported a good agreement for the sum of the PaPaS score. Furthermore, the PaPaS scores correlated with those obtained using the Lansky performance scale. Although the mean PaPaS score was higher in the pediatric palliative care team, the scores were higher than the cut-off score for referral in both groups. Conclusion The PaPaS can be a useful tool for primary care clinicians to assess the palliative care needs of patients and their families.

scholarly journals The association between varying levels of palliative care involvement on costs during terminal hospitalizations in Canada from 2012 to 2015

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Sarina R. Isenberg ◽  
Christopher Meaney ◽  
Peter May ◽  
Peter Tanuseputro ◽  
Kieran Quinn ◽  
...  
Keyword(s):  
Palliative Care ◽  
Metastatic Cancer ◽  
Estimating Equation ◽  
Population Based ◽  
Future Research ◽  
Chronic Obstructive ◽  
Discharge Abstract Database ◽  
High Involvement ◽  
Hospitalization Costs ◽  
The Cost

Abstract Background Inpatient palliative care is associated with lower inpatient costs; however, this has yet to be studied using a more nuanced, multi-tiered measure of inpatient palliative care and a national population-representative dataset. Using a population-based cohort of Canadians who died in hospital, our objectives were to: describe patients’ receipt of palliative care and active interventions in their terminal hospitalization; and examine the relationship between inpatient palliative care and hospitalization costs. Methods Retrospective cohort study using data from the Discharge Abstract Database in Canada between fiscal years 2012 and 2015. The cohort were Canadian adults (age ≥ 18 years) who died in hospital between April 1st, 2012 and March 31st, 2015 (N = 250,640). The exposure was level of palliative care involvement defined as: medium-high, low, or no palliative care. The main measure was acute care costs calculated using resource intensity weights multiplied by the cost of standard hospital stay, represented in 2014 Canadian dollars (CAD). Descriptive statistics were represented as median (IQR), and n(%). We modelled cost as a function of palliative care using a gamma generalized estimating equation (GEE) model, accounting for clustering by hospital. Results There were 250,640 adults who died in hospital. Mean age was 76 (SD 14), 47% were female. The most common comorbidities were: metastatic cancer (21%), heart failure (21%), and chronic obstructive pulmonary disease (16%). Of the decedents, 95,450 (38%) had no palliative care involvement, 98,849 (38%) received low involvement, and 60,341 (24%) received medium to high involvement. Controlling for age, sex, province and predicted hospital mortality risk at admission, the cost per day of a terminal hospitalization was: $1359 (95% CI 1323: 1397) (no involvement), $1175 (95% CI 1146: 1206) (low involvement), and $744 (95% CI 728: 760) (medium-high involvement). Conclusions Increased involvement of palliative care was associated with lower costs. Future research should explore whether this relationship holds for non-terminal hospitalizations, and whether palliative care in other settings impacts inpatient costs.

Self-Care for Nurse Leaders in Acute Care Environment Reduces Perceived Stress: A Mixed-Methods Pilot Study Merits Further Investigation

2017 ◽  
Vol 36 (1) ◽  
pp. 79-90 ◽  
Author(s):  
Susan Mac Leod Dyess ◽  
Angela S. Prestia ◽  
Doren-Elyse Marquit ◽  
David Newman
Keyword(s):  
Mixed Methods ◽  
Acute Care ◽  
Perceived Stress ◽  
Repeated Measures ◽  
Self Care ◽  
Nurse Leaders ◽  
Future Research ◽  
Care Practice ◽  
Meditation Practice ◽  
Significant Drop

Acute care practice settings are stressful. Nurse leaders face stressful demands of numerous competing priorities. Some nurse leaders experience unmanageable stress, but success requires self-care. This article presents a repeated measures intervention design study using mixed methods to investigate a self-care simple meditation practice for nurse leaders. Themes and subthemes emerged in association with the three data collection points: at baseline (pretest), after 6 weeks, and after 12 weeks (posttest) from introduction of the self-care simple meditation practice. An analysis of variance yielded a statistically significant drop in perceived stress at 6 weeks and again at 12 weeks. Conducting future research is merited.

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