Interdisciplinary research approach based on a mixed-methods design to explore patient altruism at the end of life: a study protocol.

INTRODUCTION: In the end of life context, patients are often seen as somewhat passive recipients of care provided by health professionals and relatives, with little opportunity to be perceived as autonomous and active agents. Since studies show a very high prevalence of altruistic dispositions in palliative care patients, we strive to investigate the concept of patient altruism in a set of six interdisciplinary studies by considering three settings: (1) in the general palliative context-by studying to what extent patient altruism is associated with essential psychological outcomes of palliative care (subproject 1a), how altruism is understood by patients (subproject 1b) and how altruism expressed by patients is experienced by palliative care nurses (subproject 1c); (2) in two concrete decision-making contexts-advance care planning (subproject 2a) and assisted suicide (subproject 2b); and (3) through verbal and non-verbal patient communication in palliative care settings (subproject 3). METHODS AND ANALYSIS: Subproject 1a: a cross-sectional study using validated and standardised questionnaires. Subprojects 1b and 1c: a constructivist grounded theory method aiming at developing a novel theory from semistructured interviews in both patients and nurses. Subproject 2a: a thematic analysis based on (1) audio-recordings of advance care planning encounters and (2) follow-up semidirective interviews with patients and their relatives. Subproject 2b: a qualitative study based on thematic analysis of interviews with patients actively pursuing assisted suicide and one of their relatives.Subproject 3: a conversation analysis based on audio and video-recorded interactions in two settings: (1) palliative inpatient unit and (2) advance care planning discussions. ETHICS AND DISSEMINATION: The study project was approved by the Ethics Committees of the Canton of Vaud, Bern and Ticino (no: 2023-00088). In addition to participation in national and international conferences, each project will be the subject of two scientific publications in peer-reviewed journals. Additional publications will be realised according to result triangulation between projects. A symposium opened to professionals, patients and the public will be organised in Switzerland at the end of the project.

Application and challenges of using a Constructivist Grounded Theory methodology to address an undertheorized clinical challenge: A discussion paper.

Background: The benefits of nurse-led therapeutic patient education regarding wound healing and the prevention of recurrences for individuals living with a venous leg ulcer remain unclear. Obtaining the individuals perspective could offer an in depth understanding of why and how they engage or not, in self-management strategies following nurse-led patient education. Despite strong evidence indicating the need for further investigation into the benefits of therapeutic patient education in this population there is a lack of research into how individuals cope with chronic venous insufficiency or resulting ulceration. With this discussion paper we therefore explore the challenges associated with employing a Constructivist Grounded Theory methodology to gain a deeper insight into the experiences of patients with venous leg ulcers receiving individualized nurse-led patient education programs focused on the self-management of their condition. Objective: To identify and analyse the specific methodological and practical challenges encountered when applying a Constructivist Grounded Theory methodology to gain a better understanding of how patients with venous leg ulcer experience an individualised nurse-led patient education programme concerning the self-management of their condition. Design: discussion paper. Results and Discussion: The constructivist approach to Grounded Theory methodology allows for the investigation of understudied phenomena such as nurse-led patient education for individuals living with venous leg ulcers. This methodology values the co-construction of a theory taking into consideration the inherent value of participants' and researchers' experiences. However, the specificities of constructivist epistemology challenge certain methodological aspects of Grounded Theory methods, such as how and when to use existing literature, conduct interviews to generate data and engage in the coding and theoretical sampling process for conceptualizing and proposing a theory. Conclusions: The constructivist paradigm of grounded theory methodolgy resonates with the art and science of nursing through its collaborative 'real-world' reflective approach, offering a unique way to explore understudied complex clinical nursing practice. Registration: This methodological paper is derived from a PhD study embedded in a clinical trial (NCT04019340) were the recruitment started on February 2020, approved by ethical committee of Geneva (CCER: 2019-01964). Tweetable abstract: Constructivist Grounded Theory Methodologies could support an in depth understanding of the impact of nursing interventions.

Patient altruism at the end of life: A scoping review.

OBJECTIVES: The concept of altruism is evidenced in various disciplines but remains understudied in end-of-life (EOL) contexts. Patients at the EOL are often seen as passive recipients of care, whereas the altruism of professionals and families receives more research and clinical attention. Our aim was to summarize the state of the scientific literature concerning the concept of patient altruism in EOL contexts. METHODS: In May 2023, we searched 11 databases for scientific literature on patient altruism in EOL contexts in consultation with a health information specialist. The scoping review is reported using the PRISMA checklist for scoping reviews. We used a data charting form to deductively extract data from the selected articles and then mapped data into 4 themes related to our research questions: how authors describe and employ the concept of patient altruism; expressions of patient altruism; consequences of patients' altruistic acts; and possible interventions fostering patient altruism. RESULTS: Excluding duplicates, 2893 articles were retrieved; 33 were included in the final review. Altruism was generally considered as an act or intention oriented toward the benefit of a specific (known) or non-specific (generic) recipient. Patients expressed altruism through care and support, decisions to withhold treatment or actively hasten death, and engagement in advance care planning. Consequences of altruism were categorized in patient-centered (contribution to meaning in life and quality of life), non-patient-centered (leaving a positive impact and saving money), and negative consequences (generating feelings of guilt, exposing individuals with low self-esteem). Interventions to encourage altruism comprised specific interventions, providing opportunities to plan for future care, and recognizing and respecting the patients' altruistic motivations. SIGNIFICANCE OF RESULTS: We identified heterogeneous and limited research conceptualization of patient altruism and its operationalization in palliative care settings. A deeper conceptual, empirical, and theoretical exploration of patient altruism in EOL is necessary.

Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care.

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.

The state of transience, and its influence on the wish to die of advanced disease patients: insights from a qualitative phenomenological study.

BACKGROUND: The experience of Wish to Die is common in patients living with Advanced Disease. It has been studied worldwide and qualitative studies have contributed to the understanding of the complexity of the phenomenon of the WTD but a deeper understanding on the individual's views is still needed. The objective of this study was to identify common characteristics of the experience of wish to die in advanced disease. METHODS: A phenomenological study was carried out with multicenter participation of patients with advanced disease who had expressed their wish to die to health professionals. Semi-structured interviews were employed to obtain an in-depth perspective of each patient's lived experience. A phenomenological analysis of the data collected was performed to describe and explore the characteristic aspects of the phenomenon under study. RESULTS: Fourteen patients with advanced disease were interviewed. Most of them had cancer. In the analysis of the patients' accounts of their experiences, three common characteristics were identified: a) experiencing a state of transience; b) the attempt to reconnect with oneself; and c) additional disease-related aspects that influence the wish to die. Patients expressed the need for a safe space to address the wish to die and the importance of receiving care that considers both 'being' and 'doing'. CONCLUSIONS: Patients with advanced disease and wish to die experience a state of transience where the patient lives and ephemeral state of existence. Interventions focused on reinforcing the intrinsic value of the individual emerge as essential components of a compassionate accompaniment of those facing the wish to die.

Consensus definition of advance care planning in dementia: A 33-country Delphi study.

INTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. HIGHLIGHTS: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.

Validation of the Spanish version of the five-item General Self-Efficacy (GSE) scale in a sample of nursing students: Evidence of validity, reliability, longitudinal invariance and changes in general self-efficacy and resilience in a two-wave cross-lagged panel model.

AIM: The aim of this study is to validate the Spanish version of the five-item General Self-Efficacy scale in a sample of nursing students, by: 1) offering evidence of validity and reliability; 2) studying the longitudinal measurement invariance of the scale; 3) providing evidence on the changes in the levels of self-efficacy that occur after one year of nursing education; and 4) offering longitudinal evidence on the relationship between nursing students' self-efficacy and resilience levels. BACKGROUND: Nurses' general self-efficacy has been related to both personal and organizational outcomes. In Spain, some competencies the students must acquire during the Degree in Nursing implicitly refer to self-efficacy. For the measurement of general self-efficacy, the General Self-Efficacy Scale is one of the most widely used in Europe. DESIGN: A longitudinal design was used. Research took place at the University of Valencia and the University of the Balearic Islands (Spain). Participants were 324 nursing students, in the first year of the Nursing Degree. METHODS: The five-item General Self-Efficacy scale and the Brief Resilience Coping Scale were used. Analyses included descriptive statistics, reliability estimates, confirmatory factor analysis, a longitudinal measurement invariance routine and several competing cross-lagged models. RESULTS: Evidence of reliability shown by the scale was adequate and a one-factor solution for the structure was found. Additionally, the five-item GSE showed evidence of invariance over time. A causal effect of self-efficacy on nursing students' levels of resilience was found. CONCLUSIONS: The Spanish version of the five-item General Self-Efficacy scale is a brief instrument that can contribute to the assessment of some of the basic competencies of the Degree in Nursing, which improve during their education and how these changes are related to other skills important for the nursing profession, such as resilience.

Inter-rating reliability of the Swiss easy-read integrated palliative care outcome scale for people with dementia.

BACKGROUND: The Integrated Palliative Care Outcome Scale for People with Dementia is a promising instrument for nursing home quality improvement and research in dementia care. It enables frontline staff in nursing homes to understand and rate the needs and concerns of people with dementia. We recently adapted the measure to include easy language for users from various educational backgrounds. OBJECTIVES: In this study, we examine the inter-rating reliability of the Integrated Palliative Care Outcome Scale for People with Dementia for frontline staff in nursing homes. METHODS: In this secondary analysis of an experimental study, 317 frontline staff members in 23 Swiss nursing homes assessed 240 people with dementia from a convenience sample. Reliability for individual items was computed using Fleiss Kappa. Because of the nested nature of the primary data, a generalisability and dependability study was performed for an experimental IPOS-Dem sum score. RESULTS: The individual Integrated Palliative Care Outcome Scale for People with Dementia items showed kappa values between .38 (95% CI .3-.48) and .15 (95% CI .08-.22). For the experimental IPOS-Dem sum score, a dependability index of .57 was found. The different ratings and time between ratings explain less than 2% of the variance in the sum score. The different nursing homes make up 12% and the people with dementia make up 43% of the sum score variance. The dependability study indicates that an experimental IPOS-Dem sum score could be acceptable for research by averaging two ratings. CONCLUSION: Limited research has been conducted on the measurement error and reliability of patient-centred outcome measures for people with dementia who are living in nursing homes. The Swiss Easy-Read IPOS-Dem is a promising instrument but requires further improvement to be reliable for research or decision making. Future studies may look at its measurement properties for different rater populations or at different stages of dementia. Furthermore, there is a need to establish the construct validity and internal consistency of the easy-read IPOS-Dem.

PANDORA dyadic project: hope, spiritual well-being and quality of life of dyads of patients with chronic obstructive pulmonary disease in Switzerland - a multicentre longitudinal mixed-methods protocol study.

INTRODUCTION: Chronic obstructive pulmonary disease (COPD) is responsible for 2.9 million deaths annually in Europe. Symptom burden and functional decline rise as patients reach advanced stages of the disease enhancing risk of vulnerability and dependency on informal caregivers (ICs).Evidence shows that hope is an important psycho-social-spiritual construct that humans use to cope with symptom burden and adversity. Hope is associated with increased quality of life (QoL) comfort and well-being for patients and ICs. A better understanding of the meaning and experience of hope over time as patients transition through chronic illness may help healthcare professionals to plan and deliver care more appropriately. METHODS AND ANALYSIS: This is a longitudinal multicentre mixed-methods study with a convergent design. Quantitative and qualitative data will be collected from dyads of advanced COPD patients and their ICs in two university hospitals at two points in time. The Herth Hope Index, WHO Quality of Life BREF, Functional Assessment of Chronic Illness Therapy-Spiritual Well-being and the French version of the Edmonton Symptom Assessment Scale will be used to collect data. Dyadic interviews will be conducted using a semi-structured interview guide with five questions about hope and their relationship with QoL.Statistical analysis of data will be carried out using R V.4.1.0. To test whether our theoretical model as a whole is supported by the data, structural equation modelling will be used. The comparison between T1 and T2 for level of hope, symptom burden, QoL and spiritual well-being, will be carried out using paired t-tests. The association between symptom burden, QoL, spiritual well-being and hope will be tested using Pearson correlation. ETHICS AND DISSEMINATION: This study protocol received ethical approval on 24 May 2022 from the Commission cantonale d'éthique de la recherche sur l'être humain-Canton of Vaud. The identification number is 2021-02477.

Children and young people's experiences of living with rare diseases: An integrative review.

PROBLEM: Rare diseases are any disease affecting fewer than five people in 10,000. More than 8000 rare diseases and 50-75% of all rare diseases affect children. The purpose of this review was to critically appraise and synthesize existing literature relating to the impact of rare diseases on children's day-to-day lives. ELIGIBILITY CRITERIA: An integrative literature review was conducted using the CINAHL Plus, PsycINFO, and PubMed databases. Studies were included if they were a primary source was published between the years 2005 and 2019 and written in the English language. SAMPLE: Eight primary sources met the inclusion criteria. RESULTS: Seven main themes emerged from the review as follows: (i) the experience of stigmatisations, (ii) self-consciousness, (iii) restrictions in independent living, (iv) developing resilience/coping strategies, (v) psychological and emotional impact, (vi) social impact vs social connectedness and (vii) transition challenges. CONCLUSIONS: The experience of having a rare illness differed across different age groups. Children (typically aged 3-10) with rare diseases generally view themselves and their lives the same way like their healthy peers. They were more likely to report being adaptive and resilient than those aged 12 or older. Young people reported being different compared to young children, and they faced numerous challenges related to their illness. IMPLICATIONS FOR PRACTICE: To provide the best possible level of care for children and families with rare disorders, health services must be informed and equipped to provide the necessary supports specific to the unique needs of children and young people living with rare diseases.

Behavioral pain indicators for adults with an intellectual disability: a scoping review protocol.

OBJECTIVE: This scoping review aims to identify and map the behavioral pain indicators observed when adults with an intellectual disability experience pain. INTRODUCTION: Adults with an intellectual disability have more health problems than the general population. The likelihood that this population will experience pain is high, but intellectual disability can obstruct the verbal expression of pain. Adults with an intellectual disability express pain via behavioral pain indicators; however, because no behavioral pain scale exists for this population, observers may misinterpret the pain experienced by adults with an intellectual disability. INCLUSION CRITERIA: The review will examine literature about behavioral pain indicators for adults with any type of intellectual disability who are suffering from any type of pain in any country or care setting. METHODS: The review will be conducted according to the JBI recommendations for scoping reviews. A preliminary search focusing on the concepts of intellectual disability and pain measurement was conducted for PubMed and CINAHL in March 2022. Once the protocol is validated, searches will also be carried out in Embase, JBI EBP Database, the Cochrane Database of Systematic Reviews, ProQuest Dissertations and Theses, PsycINFO, Web of Science Core Collection, ERIC, Google Scholar, MedNar, and the websites of relevant professional associations. Titles and abstracts, and then full-text studies, will be selected independently by 2 researchers and assessed against the inclusion criteria. Relevant information will be imported into a data chart. Any behavioral pain indicators identified will be classified into 14 behavioral categories. REVIEW REGISTRATION NUMBER: Open Science Framework osf.io/8xckf.

Pain Interventions for people with dementia: a quasi-experimental study.

BACKGROUND: Due to the complexity of the provision of care for people with dementia, pain assessment and management is still considered to be lacking. An optimal way to support frontline staff in providing pain assessment and management for people with dementia living in nursing homes has not yet been identified. The success of supporting interventions seems dependent on contextual factors in the nursing homes. This study, therefore, analyzes the feasibility of a nurse-led training intervention, using repeated on-site case studies, in modifying pain intensity and frequency in people with dementia. METHODS: Using a quasi-experimental design, we undertook a multi-center study of nurse-led training in pain management, with subsequent on-site case studies. Healthcare workers from 3 nursing homes assessed pain in 164 residents with dementia over 147 days. We used mixed-effect growth curve models with spline regression to analyze the data. RESULTS: We found that on-site case studies support frontline staff with pain management and assessment. Repeated reflection in case studies led to significantly longer pain free intervals (from 4.7 at baseline to 37.1 days at second follow-up) and decreased frequency of pain events (OR 0.54 at first follow-up and 0.43 at second follow-up). However no trends regarding pain intensity could be found. Therefore, on-site case studies may be valuable for improving pain frequency and pain-free intervals over time. CONCLUSION: This feasibility study shows the potential of on-site support for frontline nursing home staff. On-site case studies may also affect health outcomes in people with dementia. However, the complexity of dementia care necessitates the management of a broader range of needs. TRIAL REGISTRATION: The study was retrospectively registered on the tenth of January 2017 with the German registry of clinical trials (DRKS00009726).

A training programme for medical students in providing spiritual care to people with advanced diseases and their loved ones: A case study from the Collegium Medicum in Bydgoszcz, Nicolaus Copernicus University in Torun, Poland.

Purpose: This article presents the first programme on spiritual care particularly for people with advanced life-limiting illness including heart failure, lung disease or cancer for medical students in Poland implemented at the Collegium Medicum in Bydgoszcz of the Nicolaus Copernicus University in Torun. Methods and materials: Several steps were identified for the development of the first programme on spirituality for medical students at the Collegium Medicum in Bydgoszcz including preliminary work on the content of the programme, agreement on key concepts, terms, and definitions; consultations with teachers and review of the literature. Results: The first Polish spiritual curriculum for medical students was implemented. The spirituality curriculum will potentially contribute to better care for the people with advanced illnesses such as heart failure, chronic lung disease or cancer and improve the quality of relationships between professionals and patients. Conclusion: The article presents the content of the program, the expected learning objectives and ascribed teaching methods, along with the preliminary evaluation made by students.

Mu-opioid antagonists for opioid-induced bowel dysfunction in people with cancer and people receiving palliative care.

BACKGROUND: Opioid-induced bowel dysfunction (OIBD) is characterised by constipation, incomplete evacuation, bloating, and gastric reflux. It is one of the major adverse events (AEs) of treatment for pain in cancer and palliative care, resulting in increased morbidity and reduced quality of life. This review is a partial update of a 2008 review, and critiques as previous update (2018) trials only for people with cancer and people receiving palliative care. OBJECTIVES: To assess for OIBD in people with cancer and people receiving palliative care the effectiveness and safety of mu-opioid antagonists (MOAs) versus different doses of MOAs, alternative pharmacological/non-pharmacological interventions, placebo, or no treatment. SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, CINAHL, and Web of Science (December 2021), clinical trial registries and regulatory websites. We sought contact with MOA manufacturers for further data. SELECTION CRITERIA: Randomised controlled trials (RCTs) assessing the effectiveness and safety of MOAs for OIBD in people with cancer and people at a palliative stage irrespective of the type of terminal disease. DATA COLLECTION AND ANALYSIS: Two review authors assessed risk of bias and extracted data. The appropriateness of combining data from the trials depended upon sufficient homogeneity across trials. Our primary outcomes were laxation response, effect on analgesia, and AEs. We assessed the certainty of evidence using GRADE and created summary of findings tables. MAIN RESULTS: We included 10 studies (two new trials) randomising in-total 1343 adults with cancer irrespective of stage, or at palliative care stage of any disease. The MOAs were oral naldemedine and naloxone (alone or in combination with oxycodone), and subcutaneous methylnaltrexone. The trials compared MOAs with placebo, MOAs at different doses, or in combination with other drugs. Two trials of naldemedine and three of naloxone with oxycodone were in people with cancer irrespective of disease stage. The trial on naloxone alone was in people with advanced cancer. Four trials on methylnaltrexone were in palliative care where most participants had advanced cancer. All trials were vulnerable to biases; most commonly, blinding of the outcome assessor was not reported.  Oral naldemedine versus placebo Risk (i.e. chance) of spontaneous laxations in the medium term (over two weeks) for naldemedine was over threefold greater risk ratio (RR) 2.00, 95% confidence interval (CI) 1.59 to 2.52, 2 trials, 418 participants, I² = 0%. Number needed to treat for an additional beneficial outcome (NNTB) 3, 95% CI 3 to 4; moderate-certainty evidence). Earlier risk of spontaneous laxations and patient assessment of bowel change was not reported. Very low-certainty evidence showed naldemedine had little to no effect on opioid withdrawal symptoms. There was little to no difference in the risk of serious (non-fatal) AEs (RR 3.34, 95% CI 0.85 to 13.15: low-certainty evidence). Over double the risk of AEs (non-serious) reported with naldemedine (moderate-certainty evidence). Low-dose oral naldemedine versus higher dose Risk of spontaneous laxations was lower for the lower dose (medium term, 0.1 mg versus 0.4 mg: RR 0.69, 95% CI 0.53 to 0.89, 1 trial, 111 participants (low-certainty evidence)). Earlier risk of spontaneous laxations and patient assessment of bowel change not reported. Low-certainty evidence showed little to no difference on opioid withdrawal symptoms (0.1 mg versus 0.4 mg mean difference (MD) -0.30, 95% CI -0.85 to 0.25), and occurrences of serious AEs (0.1 mg versus 0.4 mg RR 0.25, 95% CI 0.03 to 2.17). Low-certainty evidence showed little to no difference on non-serious AEs. Oral naloxone versus placebo Risk of spontaneous laxations and AEs not reported. Little to no difference in pain intensity (very low-certainty evidence). Full data not given. The trial reported that no serious AEs occurred. Oral naloxone + oxycodone versus oxycodone Risk of spontaneous laxations within 24 hours and in the medium term not reported. Low-certainty evidence showed naloxone with oxycodone reduced the risk of opioid withdrawal symptoms. There was little to no difference in the risk of serious (non-fatal) AEs (RR 0.68, 95% CI 0.44 to 1.06), 3 trials, 362 participants, I² = 55%: very low-certainty evidence). There was little to no difference in risk of AEs (low-certainty evidence).  Subcutaneous methylnaltrexone versus placebo Risk of spontaneous laxations within 24 hours with methylnaltrexone was fourfold greater than placebo (RR 2.97, 95% CI 2.13 to 4.13. 2 trials, 287 participants, I² = 31%. NNTB 3, 95% CI 2 to 3; low-certainty evidence). Risk of spontaneous laxations in the medium term was over tenfold greater with methylnaltrexone (RR 8.15, 95% CI 4.76 to 13.95, 2 trials, 305 participants, I² = 47%. NNTB 2, 95% CI 2 to 2; moderate-certainty evidence). Low-certainty evidence showed methylnaltrexone reduced the risk of opioid withdrawal symptoms, and did not increase risk of a serious AE (RR 0.59, 95% CI 0.38 to 0.93. I² = 0%; 2 trials, 364 participants). The risk of AEs was higher for methylnaltrexone (low-certainty evidence). Lower-dose subcutaneous methylnaltrexone versus higher dose There was little to no difference in risk of spontaneous laxations in the medium-term (1 mg versus 5 mg or greater: RR 2.91, 95% CI 0.82 to 10.39; 1 trial, 26 participants very low-certainty evidence), or in patient assessment of improvement in bowel status (RR 0.98, 95% CI 0.71 to 1.35, 1 trial, 102 participants; low-certainty evidence). Medium-term assessment of spontaneous laxations and serious AEs not reported. There was little to no difference in symptoms of opioid withdrawal (MD -0.25, 95% CI -0.84 to 0.34, 1 trial, 102 participants) or occurrence of AEs (low-certainty evidence). AUTHORS' CONCLUSIONS: This update's findings for naldemedine and naloxone with oxycodone have been strengthened with two new trials, but conclusions have not changed. Moderate-certainty evidence for oral naldemedine on risk of spontaneous laxations and non-serious AEs suggests in people with cancer that naldemedine may improve bowel function over two weeks and increase the risk of AEs. There was low-certainty evidence on serious AEs. Moderate-certainty evidence for methylnaltrexone on spontaneous laxations over two weeks suggests subcutaneous methylnaltrexone may improve bowel function in people receiving palliative care, but certainty of evidence for AEs was low. More trials are needed, more evaluation of AEs, outcomes patients rate as important, and in children.

Experience of hope in adult patients with advanced chronic disease and their informal caregivers: a qualitative systematic review protocol.

OBJECTIVE: This systematic review will evaluate the experience of hope in adult patients with advanced chronic diseases other than cancer, transitioning toward end-of-life. The review will also evaluate the experience of hope in informal caregivers caring for adult patients with advanced chronic diseases other than cancer as they transition toward end-of-life. INTRODUCTION: Hope is an important resource that assists patients and informal caregivers to deal with difficult and complex situations, such as living with advanced chronic disease. INCLUSION CRITERIA: The review will include studies written in English, French, and Portuguese exploring hope. Qualitative studies focusing on adult patients with advanced chronic diseases other than cancer and/or informal caregivers will be considered. Studies with children as patients or parents as caregivers will be excluded. METHODS: The review will search Embase, MEDLINE, CINAHL, PsycINFO, Web of Science, ProQuest Dissertations and Theses, DART-Europe E-theses Portal, and Google Scholar. The search will be conducted without date restrictions. Articles will be assessed against the inclusion criteria by two independent reviewers. Data will be extracted using a standard tool. The extracted findings will be synthesized using the meta-aggregation approach through assembling and categorizing data. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO CRD42021266487.

MASCC multidisciplinary evidence-based recommendations for the management of malignant bowel obstruction in advanced cancer.

PURPOSE: To provide evidence-based recommendations on the management of malignant bowel obstruction (MBO) for patients with advanced cancer. METHODS: The Multinational Association for Supportive Care in Cancer (MASCC) MBO study group conducted a systematic review of databases (inception to March 2021) to identify studies about patients with advanced cancer and MBO that reported on the following outcomes: symptom management, bowel obstruction resolution, prognosis, overall survival, and quality of life. The review was restricted to studies published in English, but no restrictions were placed on publication year, country, and study type. As per the MASCC Guidelines Policy, the findings were synthesized to determine the levels of evidence to support each MBO intervention and, ultimately, the graded recommendations and suggestions. RESULTS: The systematic review identified 17,656 published studies and 397 selected for the guidelines. The MASCC study group developed a total of 25 evidence-based suggestions and recommendations about the management of MBO-related nausea and vomiting, bowel movements, pain, inflammation, bowel decompression, and nutrition. Expert consensus-based guidance about advanced care planning and psychosocial support is also provided. CONCLUSION: This MASCC Guideline provides comprehensive, evidence-based recommendations about MBO management for patients with advanced cancer.

Postgraduate nursing students' experiences in providing frontline and backstage care during the Covid-19 pandemic: A qualitative study.

BACKGROUND: Safety measures due to the Covid-19 pandemic necessitated universities to reorganise teaching to accommodate the students' needs, including nursing students who had been called back into clinical practice to support front-line nursing. PURPOSE: To describe the experiences of post-graduate students in nursing sciences (experienced in clinical nursing) during the Covid-19 pandemic. METHOD: This qualitative descriptive study took place at a Swiss University delivering masters and doctoral programmes in nursing sciences. Participants were post-graduate students enrolled in masters and doctoral programmes. All current students were invited by email to participate in three focus groups, which were recorded, and transcribed verbatim. Transcripts were analysed using thematic analysis. RESULTS: Thirteen students participated, with a majority who had been called back into clinical practice. Four themes were identified: Challenges of caring for patients during the coronavirus pandemic, Challenges of being a student during the pandemic, Resilience amid the difficulties, and Recognition of the Clinical Nurse Specialist competencies. CONCLUSIONS: Our results showed that amid the challenges, post-graduate nursing students demonstrated high leadership skills, resilience, and a tremendous sense of professional duty, where patients' and families' best interest remained their main concerns. Educators and nurse administrators need to acknowledge the impact of the COVID-19 pandemic on post-graduate nurses, caught in the tension between their academic career aspirations and duty of care to patients, families, and the healthcare system.