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Revista de La Facultad de Ciencias... Jun 2024Los cuidadores principales de familiares que se encuentran bajo tratamiento paliativo brindan una atención significativa, y como resultado, su calidad de vida puede... (Review)
Review
Los cuidadores principales de familiares que se encuentran bajo tratamiento paliativo brindan una atención significativa, y como resultado, su calidad de vida puede verse negativamente afectada. Se llevó a cabo una revisión sistemática para sintetizar la evidencia sobre la calidad de vida de estos cuidadores. Se utilizaron la base de datos Pubmed y la biblioteca digital de la Universidad Católica Argentina. Se revisaron 13 artículos que plantearon las siguientes temáticas: calidad de vida general, impacto en las dimensiones física, emocional, social y espiritual, relación entre el género del cuidador y la calidad de vida. Se evidencia en la literatura revisada la importancia de una adecuada evaluación de los signos y síntomas en los cuidadores familiares con el fin de poder brindar asistencia integral para favorecer su calidad de vida.
Topics: Humans; Caregivers; Palliative Care; Quality of Life; Family; Female; Male
PubMed: 38941217
DOI: 10.31053/1853.0605.v81.n2.44824 -
BMC Psychiatry Jun 2024Compulsory admissions occur in psychiatric hospitals around the world. They result in coercive and sometimes traumatic experiences for service users and carers. Legal... (Meta-Analysis)
Meta-Analysis
A qualitative meta-synthesis of service users' and carers' experiences of assessment and involuntary hospital admissions under mental health legislations: a five-year update.
BACKGROUND
Compulsory admissions occur in psychiatric hospitals around the world. They result in coercive and sometimes traumatic experiences for service users and carers. Legal and service reforms in various countries are intended to reduce rates of detention and improve service user experience. We aimed to inform policy and service delivery by providing an up-to-date synthesis of qualitative evidence on service users' and carers' experiences of assessment and detention under mental health legislation, updating previous reviews in which we searched for literature published up to 2018.
METHODS
We searched five bibliographic databases for studies published between January 2018 and March 2023. We identified 24 additional studies reporting qualitative investigations of service users' or carers' experiences of assessment or detention under mental health legislation. A team including researchers with relevant personal experience analysed and synthesised data using a thematic synthesis approach.
RESULTS
Findings suggest that views on compulsory admissions and assessment varied: many reports highlighted its often negative, traumatic impacts on emotional well-being and self-worth, with fewer accounts of it as an opportunity to access help and support, accompanied by feelings of relief. Experiences of racial discrimination, inequality of access, and dissatisfaction with support before and after hospital stay were more prominent than in our previous reviews.
CONCLUSIONS
Increasing service user and carer involvement in treatment decisions, provision of timely information at key stages of the admission process, training of key personnel, addressing the issue of discrimination, and investing in community alternatives of inpatient care may contribute to and lead to better overall treatment experiences.
PROTOCOL REGISTRATION
The study protocol has been registered in the PROSPERO database on 30th May 2023 (CRD42023423439).
Topics: Humans; Caregivers; Commitment of Mentally Ill; Qualitative Research; Hospitals, Psychiatric; Mental Disorders; Mental Health Services
PubMed: 38937705
DOI: 10.1186/s12888-024-05914-w -
Frontiers in Medicine 2024Family-centered care (FCC) is a model of care provision that sees a patient's loved ones as essential partners to the health care team and positively influences the...
INTRODUCTION
Family-centered care (FCC) is a model of care provision that sees a patient's loved ones as essential partners to the health care team and positively influences the psychological safety of patients and loved ones.
OBJECTIVES
This review aims to present an overview of impactful publications, authors, institutions, journals, countries, fields of application and trends of FCC in the 21 century as well as suggestions on further research.
METHODS
The Web of Science Database was searched for publications on FCC between January 2000 and Dezember 2023. After screening for duplicates, VOS Viewer and CiteSpace were used to analyze and visualize the data.
RESULTS
Scientific interest in FCC has grown and resulted in the scientific output of 4,836 publications originating from 103 different countries. Based on the frequent author keywords, FCC was of greatest interest in neonatology and pediatrics, nursing, critical and intensive care, end-of-life and palliative care, and patient-related outcomes. The recent research hotspots are "patient engagement," "qualitative study," and "health literacy."
CONCLUSION
FCC has gained recognition and spread from the pediatric to the adult palliative, intensive, end-of-life and geriatric care settings. This is a very reassuring development since adults, especially when older, want and need the assistance of their social support systems. Recent research directions include the involvement of patients in the development of FCC strategies, health literacy interventions and the uptake of telemedicine solutions.
PubMed: 38933103
DOI: 10.3389/fmed.2024.1401577 -
Supportive Care in Cancer : Official... Jun 2024Peripherally inserted central catheters (PICCs) and midline catheters (MCs) may offer convenient intravenous access, but evidence to support their place in palliative... (Review)
Review
BACKGROUND
Peripherally inserted central catheters (PICCs) and midline catheters (MCs) may offer convenient intravenous access, but evidence to support their place in palliative care is limited. This review aimed to assess catheter indications, utilization, complications, dwell time, and patient experiences in cancer patients receiving palliative care.
METHODS
A systematic search for studies on catheter utilization for supportive or symptom treatment was conducted in Medline, Embase, CINAHL, Web of Science, Cochrane, and CENTRAL databases. Studies with a study population or a subgroup of palliative care cancer patients were included. Study quality was assessed using the Effective Public Health Practice Quality assessment tool.
RESULTS
Of 7631 unique titles, 17 articles were examined in detail, all published between 2002 and 2022. Median catheter dwell time varied from 15 to 194 days, the longest when utilized for home parenteral nutrition. For pain and symptom management, the typical duration was 2-4 weeks, often until the patient's death. Complication rates were minimal, with thrombosis, infections, and occlusion ranging from 0 to 2.46 incidents per 1000 catheter days. In studies from palliative care services, patients reported minimal distress during procedures and high user satisfaction. Quality of life assessments post-procedure improved, possibly influenced by concurrent specialist palliative care provision. All studies were assessed to be of moderate or weak quality.
CONCLUSION
PICC and MC are safe and valuable tools in palliative care cancer patients who would benefit from intravenous access for symptom management. Further studies are needed to clarify indications for PICC or MC in palliative care.
Topics: Humans; Palliative Care; Neoplasms; Central Venous Catheters; Catheterization, Peripheral; Catheterization, Central Venous
PubMed: 38926160
DOI: 10.1007/s00520-024-08664-3 -
BMJ Supportive & Palliative Care Jun 2024The Surprise Question, 'Would you be surprised if this person died within the next year?' is a simple tool that can be used by clinicians to identify people within the...
BACKGROUND
The Surprise Question, 'Would you be surprised if this person died within the next year?' is a simple tool that can be used by clinicians to identify people within the last year of life. This review aimed to determine the accuracy of this assessment, across different healthcare settings, specialties, follow-up periods and respondents.
METHODS
Searches were conducted of Medline, Embase, AMED, PubMed and the Cochrane Central Register of Controlled Trials, from inception until 01 January 2024. Studies were included if they reported original data on the ability of the Surprise Question to predict survival. For each study (including subgroups), sensitivity, specificity, positive and negative predictive values and accuracy were determined.
RESULTS
Our dataset comprised 56 distinct cohorts, including 68 829 patients. In a pooled analysis, the sensitivity of the Surprise Question was 0.69 ((0.64 to 0.74) I=97.2%), specificity 0.69 ((0.63 to 0.74) I=99.7%), positive predictive value 0.40 ((0.35 to 0.45) I=99.4%), negative predictive value 0.89 ((0.87 to 0.91) I=99.7%) and accuracy 0.71 ((0.68 to 0.75) I=99.3%). The prompt performed best in populations with high event rates, shorter timeframes and when posed to more experienced respondents.
CONCLUSIONS
The Surprise Question demonstrated modest accuracy with considerable heterogeneity across the population to which it was applied and to whom it was posed. Prospective studies should test whether the prompt can facilitate timely access to palliative care services, as originally envisioned.
PROSPERO REGISTRATION NUMBER
CRD32022298236.
PubMed: 38925876
DOI: 10.1136/spcare-2024-004879 -
Journal of Pain and Symptom Management Jun 2024Co-design is a methodology that includes active collaboration between stakeholders in designing solutions and has been used in the development and implementation of... (Review)
Review
CONTEXT
Co-design is a methodology that includes active collaboration between stakeholders in designing solutions and has been used in the development and implementation of palliative care (PC) interventions.
OBJECTIVES
To synthesize the state of evidence for co-design in the development of PC interventions.
METHODS
We searched PubMed, EMBASE, and CINAHL for peer-reviewed studies published after 1995 that reported evidence of co-designed interventions and outcomes in patients receiving palliative, hospice, or end-of-life care. We screened studies through independent and blinded dual review within Covidence and assessed study quality with the 2018 Mixed Methods Appraisal Tool. We narratively synthesized co-design duration, engagement approach, stakeholders involved, intervention designs, follow-ups, and outcomes, comparing among co-designs reporting meaningful improvement in outcomes. We created a best practice checklist which we used to evaluate co-design use in each study.
RESULTS
1,036 abstracts and 54 full text articles were screened. 28 studies met inclusion criteria and were abstracted. Feedback collection modalities ranged from iterative drafting, pilot testing, advisory panels, workshops, focus groups, and interviews. 13 studies applied pretesting/prototyping through pre-test post-test, focus groups, prototypes, alpha and beta testing, and mock-ups. 11 studies reported improved outcomes, 8 of which utilized iterative co-design. All the studies reporting improved outcomes mentioned meeting with stakeholders at least twice. 2 studies met all criteria in our co-design best practice checklist.
CONCLUSION
Co-designed PC interventions demonstrate high variance in the modality of acquiring feedback and application of co-design. Successful co-design leading to improvement in outcomes is achieved by involving patients, caregivers, and providers in iterating intervention design.
PubMed: 38909694
DOI: 10.1016/j.jpainsymman.2024.06.007 -
Pediatric Cardiology Jun 2024While many experts in pediatric cardiology have emphasized the importance of palliative care involvement, very few studies have assessed the influence of specialty... (Review)
Review
While many experts in pediatric cardiology have emphasized the importance of palliative care involvement, very few studies have assessed the influence of specialty pediatric palliative care (SPPC) involvement for children with heart disease. We conducted a systematic review using keywords related to palliative care, quality of life and care-satisfaction, and heart disease. We searched PubMed, EMBASE, CINAHL, CENTRAL and Web of Science in December 2023. Screening, data extraction and methodology followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) recommendations. Pairs of trained reviewers independently evaluated each article. All full texts excluded from the review were hand-screened for eligible references including systematic reviews in general pediatric populations. Two reviewers independently extracted: (1) study design; (2) methodology; (2) setting; (3) population; (4) intervention/exposure and control definition; (5) outcome measures; and (6) results. Of 4059 studies screened, 9 met inclusion criteria including two with overlapping patient data. Study designs were heterogenous, including only one randomized control and two historical control trials with SPPC as a prospective intervention. Overall, there was moderate to high risk of bias. Seven were single centers studies. In combined estimates, patients who received SPPC were more likely to have advance care planning documented (RR 2.7, [95%CI 1.6, 4.7], p < 0.001) and resuscitation limits (RR 4.0, [2.0, 8.1], p < 0.001), while half as likely to have active resuscitation at end-of-life ([0.3, 0.9], p = 0.032). For parental stress, receipt of SPPC improved scores by almost half a standard deviation (RR 0.48, 95%CI 0.10, 0.86) more than controls. Ultimately, we identified a paucity of high-quality data studying the influence of SPPC; however, findings correlate with literature in other pediatric populations. Findings suggest benefits of SPPC integration for patients with heart disease and their families.
PubMed: 38907871
DOI: 10.1007/s00246-024-03535-4 -
Current Pain and Headache Reports Jun 2024Chronic headaches are a significant source of disability worldwide. Despite the development of conventional strategies, a subset of patients remain refractory and/or... (Review)
Review
PURPOSE OF REVIEW
Chronic headaches are a significant source of disability worldwide. Despite the development of conventional strategies, a subset of patients remain refractory and/or experience side effects following these treatments. Hence, occipital nerve stimulation (ONS) should be considered as an alternative strategy for intractable chronic headaches. This review aims to provide a comprehensive overview of the effectiveness, safety, mechanisms and practical application of ONS for the treatment of headache disorders.
RECENT FINDINGS
Overall response rate of ONS is 35.7-100%, 17-100%, and 63-100% in patients with cluster headache, chronic migraine and occipital neuralgia respectively. Regarding the long-term effectivity in all groups, 41.6-88.0% of patients remain responders after ≥ 18.3 months. The most frequently reported adverse events include lead migration/fracture (13%) and local pain (7.3%). Based on our results, ONS can be considered a safe and effective treatment for chronic intractable headache disorders. To support more widespread application of ONS, additional research with larger sample sizes should be conducted.
PubMed: 38907793
DOI: 10.1007/s11916-024-01271-1 -
JNCI Cancer Spectrum Jun 2024Although the benefits of consumer involvement in research and healthcare initiatives are known, there is a need to optimise this for all people with cancer. This...
OBJECTIVE
Although the benefits of consumer involvement in research and healthcare initiatives are known, there is a need to optimise this for all people with cancer. This systematic review aimed to synthesise and evaluate the application of co-design in the oncology literature and develop recommendations to guide the application of optimal co-design processes and reporting in oncology research, practice, and policy.
METHODS
A systematic review of co-design studies in adults with cancer was conducted, searching MEDLINE, CINAHL, Embase and PsycINFO databases and included studies focused on two concepts, co-design and oncology.
RESULTS
A total of 5652 titles and abstracts were screened, resulting in 66 eligible publications reporting on 51 unique studies. Four frameworks were applied to describe the co-design initiatives. Most co-design initiatives were designed for use in an outpatient setting (n = 38; 74%) and were predominantly digital resources (n = 14; 27%) or apps (n = 12; 23%). Most studies (n = 25; 49%) used a co-production approach to consumer engagement. Although some studies presented strong co-design methodology, most (n = 36; 70%) did not report the co-design approach and 14% used no framework. Reporting was poor for participant level of involvement, the frequency and time commitment of co-design sessions. Consumer participation level was predominantly collaborate (n = 25; 49%).
CONCLUSIONS
There are opportunities to improve the application of co-design in oncology research. This review has generated recommendations to guide i) methodology and frameworks, ii) recruitment and engagement of co-design participants, and iii) evaluation of the co-design process. These recommendations can help drive appropriate, meaningful, and equitable co-design, leading to better cancer research and care.
PubMed: 38897655
DOI: 10.1093/jncics/pkae048 -
International Journal of Palliative... May 2024Paediatric palliative care (PPC) has evolved in response to the increased prevalence of children who have been diagnosed with life-limiting conditions. Nursing care is a... (Review)
Review
BACKGROUND
Paediatric palliative care (PPC) has evolved in response to the increased prevalence of children who have been diagnosed with life-limiting conditions. Nursing care is a fundamental aspect of PPC and understanding nurses' experiences is imperative to the provision and development of quality holistic child-centred services.
AIM
To review nurses' experiences of providing palliative care for children with life-limiting conditions.
METHOD
A systematic database search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL) Complete, Ovid Medline and Scopus was undertaken. Key words consisted of 'palliative care' or 'terminal care' or 'dying' or 'end-of-life care' and children* or paediatric* or pediatric* and 'nurs* experience*' or 'nurs* view*' or 'nurs* perspective*' or 'nurs* feeling*'. Inclusion criteria included peer-reviewed studies published between 2016-2023 in the English language.
FINDINGS
A thematic approach was adopted with the 11 papers selected for the review and each study critically analysed to identify three recurring themes. The themes included: 'a broken wreck', 'makes a life worth living' and 'challenges in doing 100%'. Findings point to mixed feelings among nurses in providing PPC and suggest that nurses experience emotional distress when caring for dying children. With appropriate supports and inspiration from their paediatric patients, nurses are determined to provide a 'good death' for the children in their care. Nevertheless, the perceived lack of knowledge and experience, communication struggles and personal dilemmas can be predisposing factors in triggering negative experiences among nurses when providing palliative care for children with life-limiting conditions.
RECOMMENDATIONS
Education and policy development is required to meet the practice needs and support the emotional needs of nurses engaged in PPC. Further research is required to generate PPC evidence-based nursing interventions. In doing so, high quality PPC practice will be promoted, thereby ensuring high quality PPC for the children and their families.
Topics: Humans; Child; Hospice and Palliative Care Nursing; Palliative Care; Attitude of Health Personnel
PubMed: 38885152
DOI: 10.12968/ijpn.2024.30.5.212