International journal of palliative nursing最新文献

Background: Neuromuscular diseases are inherited and the prevalance of neuromuscular disease is estimated to be around 1:2000.

Methods: This cross-sectional research was conducted with a qualitative research model. Data were collected from patients with an online survey using the snowball sampling method. The study was conducted in accordance with the STROBE checklist methodology. Frequencies and percentages were used to analyse demographic data, and content analysis was used for qualitative opinions.

Results: Most of the participants were men and their education levels were low. Participants reported experiencing physical and socio-economic barriers to accessing healthcare. Participants also stated that these barriers have worsened since COVID-19.

Conclusions: Patients with hereditary myopathy are stigmatised by society and face different problems depending on the type of disease and level of function. It is recommended that decision-makers enable patients with hereditary myopathy in exceptional situations to access healthcare services and take steps to resolve their problems.

Background: In 2017, a clinical nurse specialist (CNS) triaging role was created within a specialist palliative care community service (SPCCS) in Ireland to enhance the triage process. The aim of this study is to evaluate the effectiveness of the role regarding data collection and reporting. Structured feedback from healthcare professionals (HCPs) was obtained on the effects, challenges and sustainability of this role.

Methods: This study used a mixed-methods approach. A quantitative analysis of referrals triaged by the SPCCS CNS over 2 years (2018-2019) was performed. Two focus groups with HCP's within the same service were completed in January 2020 and one-to-one interviews were conducted. The quantitative and qualitative results were merged using a triangulation protocol.

Results: In 2017, new health service executive (HSE) standards to categorise the urgency of patient assessment were introduced. Quantitatively, an improvement within the triage process was seen, with an increase in compliance with national access standards. In 2018, compliance was 89.1%. In 2019, this was 96.8%, an improvement of 7.7%. A data discrepancy of 9.5% of referrals was noted over the first 9 months of 2018. After this, data documentation and congruency were seen to improve for the final 3 months of 2018 to 100% and remained at 100%. Qualitative data highlighted the benefits and challenges of the Triage CNS role. Mixed-methods correlation revealed corroboration between both using a triangulation protocol.

Conclusion: The triage CNS role was pivotal as an initial point of referral contact. Increased compliance with national access standards occurred resulting in improvements in case and case-load management, information gathering, documentation, data collection and analysis.

Background: No specific evaluation of palliative care (PC) has been carried out to date despite its effective integration into Moroccan healthcare strategy.

Aims: To analyse the evolution of PC-related research in Morocco over the last two decades.

Methods: In this study, articles indexed in Web Of Science and PubMED that include the words Morocco and palliative, in their content, in French and English, with at least one author affiliated to a Moroccan institution and published between 2000 and 2020, were evaluated with bibliometrics methods to determine a timeline, a mapping of publications and collaborations, and the main journals, types and topics of publications.

Findings: A total of 87.1% of articles have been published since 2011. Some 82.1% concern oncology. A total of 48.5% were produced within the same institution and international collaboration represents only 9.9% of the articles.

Conclusion: The number of PC related articles have increased since 2011, especially in regions with a greater supply of oncology care.

Background: The establishment of paediatric hospices improves the quality of care of paediatric nurses.

Aim: To examine the effect of establishing paediatric hospices on the quality of care of paediatric nurses.

Methods: Data was collected between 22 October 2022 and 25 February 2023. An online survey method was used to collect sociodemographic data and paediatric hospice data for paediatric nurses and a scale was used to determine the opinions of nurses working in the field of paediatrics. A total of 300 paediatric nurses who voluntarily participated in the collection of the research data were selected with the convenience sampling method, with written consent. SPSS 26.0 data analysis programme was used in the statistical analysis of the data obtained in the study, and Independent Sample t-test and ANOVA analysis were used in the analysis of the data.

Findings: Of the participating paediatric nurses, 60.9% were women, 39.1% were men, 41.1% were married, 65.9% were between the ages of 22-33, and 71.6% worked at a paediatric hospice. There was no significant difference in paediatric hospice scale scores according to sociodemographic variables such as gender, age, marital status, education level and the health institution worked by paediatric nurses (p>.05). There was a significant difference in paediatric hospice scale scores according to hospice information. It was determined that the establishment of paediatric hospices had an effect on the quality of care (p<.01).

Conclusion: Paediatric nurses felt that the establishment of paediatric hospices would improve the quality of care of children at the end of life. It is recommended that applications and studies on the establishment and structuring of paediatric hospices should be carried out by expanding the samples, not only in the field of paediatric nursing, but also in all nursing fields.

Background: Palliative care is defined as active and global care that provides holistic care integrating the body, mind and spirit of the dying person. A person's health deteriorates at the end of life and nurses facilitate patients to manage their personal body care. Knowing and considering the impact of disease on individuals' lives, how they adapt to cope with it, and the meaning they give to it, can help nurses. This is because of the embodiment concept of living in and through our bodies. The aim of the study is to explore palliative care patients' experiences with nurses during body care.

Methods: A descriptive phenomenological approach based on Husserl's philosophical perspective was used. A purposive sample of eight palliative care patients were enrolled in the study. Semi-structured interviews were conducted between November 2018 and January 2019, in an Italian hospice. The interviews were about patients' feelings during nursing body care. The transcripts were analysed using Giorgi's phenomenological method. Several strategies were used to ensure the study's reliability.

Results: The qualitative analysis revealed six categories that converged in three themes: 1) body care requires a specific competence; 2) patients experience difficulties during care by nurses; 3) compassionate care relationships help patients to find wellbeing and balance.

Conclusions: People at the end of life find the deterioration of their body distressing and a reminder that they are about to die. These considerations give us an understanding of patient embodiment and the significance of a patient's lived experiences at the end of their life. This phenomenon in nursing should be explored further in future research, to help inform more targeted care strategies.

Synopses of a selection of recently published research articles of relevance to palliative care.

Background: To describe the use of a telephone consultation (TC) hotline for palliative care (PC) patients and their families at home provided by a PC service, during the COVID-19 lockdown.

Methods: Observational and cross-sectional study of a TC hotline performed by a PC service from 1 January to 31 December 2020. Data was collected through a record sheet completed during the call. Descriptive analyses were performed using the SPSS software (V.21 for Windows).

Results: A total of 494 calls were retrieved (n=187 patients; 6500 minutes recorded). Compared to 2019, incoming calls increased 33.8%. Most callers were a family member (n=419) or a community health worker (n= 60). The peak of calls was registered in April (13.5%), May (13.2%) and October (15.0%). Main problems included uncontrolled symptoms (81.9%), need for medication (8.6%), information (4.8%) and consultation rescheduling (2.6%). In 81.9% of the cases, the call occurred during a crisis. The PC team solved 92.9% of the problems. Only 20 patients were admitted in the emergency department (this was 30.5% less compared to 2019).

Conclusions: The TC is a feasible alternative to traditional in-person follow-ups. Callers considered it very useful, especially during the COVID-19 lockdown. Communication was improved and admissions to emergency services were reduced.