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Cynthia A Mannion, Shelley Raffin-Bouchal, Christena Jane HenshawFaculty of Nursing, University of Calgary, Calgary, Alberta, CanadaBackground: Refugees experience dietary changes as part of the daily challenges they face resettling in a new country. Sudanese women seek to care and feed their families, but face language barriers in the marketplace, limited access to familiar foods, and forced new food choices. This study aimed to understand the acceptability of a purse-sized nutrition resource, “The Market Guide”, which was developed to help recently immigrated Sudanese refugee women identify and purchase healthy foods and navigate grocery stores.Methods: Eight women participated in a focus group, four of whom were also observed during accompanied grocery store visits. Individual interviews were conducted with four health care workers at the resettlement center to gather perceptions about the suitability of The Market Guide. Focus groups and interviews were audiotaped and transcribed. Data from field notes and transcripts were analyzed using grounded theory for preliminary open codes, followed by selective and theoretical coding.Results: The Market Guide was of limited use to Sudanese women. Their response to this resource revealed the struggles of women acculturating during their first year in Calgary, Canada. We discovered the basic social process, “Navigating through a strange and complex environment: learning ways to feed your family.” Language, transportation, and an unfamiliar marketplace challenged women and prevented them from exercising their customary role of “knowing” which foods were “safe and good” for their families. The nutrition resource fell short of informing food choices and purchases, and we discovered that “learning to feed your family” is a relational process where trusted persons, family, and friends help navigate dietary acculturation.Conclusion: Emergent theory based on the basic social process may help health care professionals consider relational learning when planning health promotion and nutrition activities with Sudanese families.Keywords: nutrition resource, dietary acculturation, Sudanese refugees, grounded theory, health promotion

Theresa Green1, Shreyas Gandhi2, Tessa Kleissen1, Jessica Simon1,3, Shelley Raffin-Bouchal1, Karla Ryckborst41Faculty of Nursing, University of Calgary, Calgary, AB, Canada; 2Health Sciences, McMaster University, Hamilton, ON, Canada; 3Department of Medicine, University of Calgary, Calgary, AB, Canada; 4Calgary Stroke Program, Alberta Health Services, Calgary, AB, CanadaPurpose: Individuals who experience stroke have a higher likelihood of subsequent stroke events, making it imperative to plan for future medical care. In the event of a further serious health event, engaging in the process of advanced care planning (ACP) can help family members and health care professionals (HCPs) make medical decisions for individuals who have lost the capacity to do so. Few studies have explored the views and experiences of patients with stroke about discussing their wishes and preferences for future medical events, and the extent to which stroke HCPs engage in conversations around planning for such events. In this study, we sought to understand how the process of ACP unfolded between HCPs and patients post-stroke.Patients and methods: Using grounded theory (GT) methodology, we engaged in direct observation of HCP and patient interactions on an acute stroke unit and two stroke rehabilitation units. Using semi-structured interviews, 14 patients and four HCPs were interviewed directly about the ACP process.Results: We found that open and continual ACP conversations were not taking place, patients experienced an apparent lack of urgency to engage in ACP, and HCPs were uncomfortable initiating ACP conversations due to the sensitive nature of the topic.Conclusion: In this study, we identified lack of engagement in ACP post-stroke, attributable to patient and HCP factors. This encourages us to look further into the process of ACP in order to develop open communication between the patient with stroke, their families, and stroke HCPs.Keywords: qualitative, engagement, health care providers, palliative

This article is directed towards a deeper understanding of emotional issues that underpin hoarding behaviors by older people. A focused ethnographic research design was used as the method of exploration. The sample consisted of eight older adults who received home care and who were identified as exhibiting compulsive hoarding behaviors. The act of acquiring excess was found to be reassuring for older hoarders because stockpiled possessions relieved their anxieties and helped them to feel proud and productive, needed by others, connected, socially engaged, and in control. The hoarded possessions had value that was embedded but undeclared. Older hoarders were likely to have a positive view of themselves and their hoarding habits. For those who were not in imminent danger, hoarding constituted a certain quality of life. [ABSTRACT FROM AUTHOR]

Purpose: Multiple myeloma is an incurable hematologic cancer. A palliative approach to care can be used in conjunction with curative therapy to alleviate suffering, but is underutilized in the hemato- oncology population. The purpose of this study was to explore living with multiple myeloma and individuals' experiences with, and perceptions of a palliative approach in their care., Methods: Straussian grounded theory was employed. Ten individuals with multiple myeloma participated between October 2021 and May 2022., Results: A theoretical model depicting the process of living with multiple myeloma was developed. Seven categories emerged from the data, as well as a core category: 'existing in the liminal space between living with and dying from multiple myeloma'. Results demonstrate that a palliative approach to care was inconsistently utilized., Conclusions: The model designed from the participant data offers an explanation of the process of living with multiple myeloma and how a palliative approach to care can be utilized to help these individuals., (© 2024 Canadian Association of Nurses in Oncology (CANO).)

Objectif: Le myélome multiple est un cancer hématologique incurable. Pour alléger la souffrance, il est possible d'employer une approche palliative en conjonction avec un traitement curatif, mais cette approche est sous-utilisée chez les patients en hémato-oncologie. L'objectif de la présente étude est d'examiner l'expérience des personnes atteintes d'un myélome multiple qui reçoivent un traitement palliatif dans le cadre de leurs soins, et de comprendre comment ils perçoivent cette approche., Méthodologie: La présente étude suit le modèle de la théorie ancrée de Strauss. En tout, 10 personnes atteintes de myélome multiple y ont participé entre octobre 2021 et mai 2022., Résultats: Les chercheuses ont créé un modèle théorique illustrant le processus de l'expérience du myélome multiple. Les données ont permis d'extrapoler 7 catégories, ainsi qu'une catégorie centrale, c'est-à-dire « le fait d'exister dans l'espace liminal entre la vie avec le myélome multiple et la mort à cause de la maladie ». Selon les résultats, le recours à l'approche palliative manquait de constance., Conclusion: Le modèle conçu à partir des données recueillies auprès des participants rend compte de l'expérience du myélome multiple et de l'utilité de l'approche palliative., (© 2024 Canadian Association of Nurses in Oncology (CANO).)

Objective: To highlight the neurosurgical implications of the hypoxia-inducible factor-2α- targeting agent belzutifan in the management of both von-Hippel Lindau (VHL)-associated and sporadic hemangioblastomas (HBLs)., Methods: The literature was queried for VHL, HBLs, and belzutifan. A summary of recent uses of belzutifan and currently ongoing clinical trials that are investigating the use of belzutifan in the treatment of HBLs is presented., Results: VHL disease occurs as a result of germline mutations in the VHL tumor suppressor gene on chromosome 3p25-p26, leading to growth of benign and malignant tumors such as HBLs. The possibility of intermittent growth in HBLs indicates that it is important to avoid hasty surgical interventions. Belzutifan is the first nonsurgical food and drug administration-approved treatment for VHL disease-related tumors that may delay or circumvent the need for surgery or radiation therapy by inhibiting HIF-2α, an important component of cellular hypoxic response. There is limited real-world experience of belzutifan in patients with HBLs as a primary indication, though there are 2 phase II clinical trials investigating the use of belzutifan in the treatment of HBLs., Conclusions: There is limited experience regarding the use of belzutifan for CNS hemangioblastoma. While its application has been limited to a small group of clinical cases, it has exhibited significant efficacy in reducing the size and consequences of HBLs. Based on the promising outcomes observed in individual patient experiences and ongoing clinical trials, we infer that further exploration and integration of belzutifan into neurosurgical treatment plans for both sporadic and VHL-associated HBLs are warranted., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Objective: To describe the experiences of nurses as they learned to provide palliative care in the NICU., Design: Interpretive description., Setting: Four NICUs in three Canadian provinces, including one rural center and three tertiary centers., Participants: Nine NICU nurses with 3 to 21 years of experience who provided neonatal palliative care., Methods: We collected data using online interviews that we recorded and transcribed. We analyzed data using immersion, inductive coding, reflective memoing, and thematic analysis., Results: Participants received little or no formal education in neonatal palliative care and instead learned to provide this care through observation and experience. Participants said it was important to find meaning in their work, which contributed to their motivation to learn to provide high-quality neonatal palliative care. Participants described challenges, including unit cultures in which early palliative care was not embraced. We identified three overarching themes that represented the participants' experiences: Meaning-Making in Neonatal Palliative Care, Challenges in Providing Neonatal Palliative Care, and Ill-Prepared to Provide Neonatal Palliative Care., Conclusion: Standardized education may improve the quality of care and nurses' experiences with neonatal palliative care. We recommend designing and evaluating a standardized curriculum on neonatal palliative care., Competing Interests: Conflict of Interest The authors report no conflicts of interest or relevant financial relationships., (Copyright © 2023 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses. Published by Elsevier Inc. All rights reserved.)

Intravenous thrombolysis is the standard treatment for acute ischemic stroke. We here report the cases of thrombolysis alert in the private sector in Morocco We conducted a prospective study of all patients with neurological deficit of sudden onset occurred within the first 12 hours admitted to the Emergency Department of the Al Badie international private clinic from January 2022 to September 2023. Epidemiological, clinical and etiological characteristics as well as data on outpatient and inpatient delays were collected. Sixty patients were included in the study. The average admission delay was 198.36 ± 79.23 minutes. The mean NIHSS (National Institutes of Health Stroke Scale) score was 10.41 ± 4.97. The average time for imaging was 26.68 ± 9.63 minutes. Ischaemic stroke was the most common diagnosis (85%), followed by "stroke mimics" (11.6%). Thirteen patients underwent thrombolysis with tenecteplase. The mean time from admission to the initiation of thrombolysis was 107.15 ± 24.48 minutes. Follow-up imaging at 24 hours post thrombolysis revealed symptomatic haemorrhagic transformation in 3 patients. Six patients were transferred to the Hassan II University Hospital for thrombolysis and/or mechanical thrombectomy. After 3 months, 4 patients were autonomous (Rankin score changed between 0 and 2). Our experience shows that it is imperative to reduce outpatient and inpatient delays in treatment in order to increase the proportion of patients treated with thrombolysis., Competing Interests: Les auteurs ne déclarent aucun conflit d´intérêts., (Copyright: Imane Najmi et al.)

Introduction and Aim: The advances and the wide use of brain imaging have considerably increased the prevalence of silent brain infarctions (SBI). We aim in this study to determine the prevalence of SBI in patients presenting with acute cardioembolic stroke and the predictive cardiovascular risk factors., Methods: This retrospective study included 267 patients presenting with acute cardioembolic stroke in the emergency and/or neurology departments of the Hassan II University Hospital Center. Clinical, biological and echocardiographic characteristics were recorded. All patients were screened for SBI by brain imaging., Results: The prevalence of SBI in our series was 46%. A group of 203 non-valvular patients and a group of 64 valvular patients were distinguished. In non-valvular group, the average age was 72.97±10.53years. The prevalence of SBI was 45.3%. Forty-four percent of patients with SBI had atrial fibrillation (AF). In multivariate regression analysis, the history of previous stroke, CHA 2 DS 2 -VASc Score≥4, enlarged left atrium (LA), the association of AF with enlarged LA and the lability of International Normalized Ratio in patients initially treated with anticoagulants were significantly associated with the occurrence of SBI (P=0.013, P=0.032, P=0.0001, P=0.01, P=0.03, respectively). Territorial location was significantly the most frequent (P=0.007). In valvular group, the average age was 57.19±14.38years. The prevalence of SBI was 48.4%. In multivariate regression analysis, SBI were significantly associated with moderate or severe mitral stenosis (P=0.02) and with the enlarged LA (P=0.02). In all patients, Modified Rankin Scale at 3 months of discharge from the acute stroke was significantly higher (mRS≥3) in patients with SBI (P=0.04)., Conclusions: SBI requires good management of associated cardiovascular risk factors in a population presenting with initial cardioembolic stroke., (Copyright © 2024 Elsevier Masson SAS. All rights reserved.)

Nurses in NICUs report insufficient education as a persistent barrier to providing quality neonatal palliative care (NPC). Since existing literature on educational interventions in NPC is limited, this review aimed to identify and narratively synthesize literature both about nurses' attitudes toward NPC and the NPC education received by nurses. We conducted a nonsystematic narrative literature review. Four themes were identified from the 28 articles included in this review. These were as follows: (a) nursing work in NPC, (b) NICU nurses' experiences and perceptions of NPC, (c) facilitators and barriers to nursing work in NPC, and (d) educational interventions in NPC. This literature review identified studies about NICU nurses' experiences and education in providing NPC. NICU nurses both desired and lacked education in NPC. This literature review identifies the importance of developing and evaluating NPC education for nurses., (© Copyright 2024 Springer Publishing Company, LLC.)

Background: Health research partnership approaches have grown in popularity over the past decade, but the systematic evaluation of their outcomes and impacts has not kept equal pace. Identifying partnership assessment tools and key partnership characteristics is needed to advance partnerships, partnership measurement, and the assessment of their outcomes and impacts through systematic study., Objective: To locate and identify globally available tools for assessing the outcomes and impacts of health research partnerships., Methods: We searched four electronic databases (Ovid MEDLINE, Embase, CINAHL + , PsychINFO) with an a priori strategy from inception to June 2021, without limits. We screened studies independently and in duplicate, keeping only those involving a health research partnership and the development, use and/or assessment of tools to evaluate partnership outcomes and impacts. Reviewer disagreements were resolved by consensus. Study, tool and partnership characteristics, and emerging research questions, gaps and key recommendations were synthesized using descriptive statistics and thematic analysis., Results: We screened 36 027 de-duplicated citations, reviewed 2784 papers in full text, and kept 166 studies and three companion reports. Most studies originated in North America and were published in English after 2015. Most of the 205 tools we identified were questionnaires and surveys targeting researchers, patients and public/community members. While tools were comprehensive and usable, most were designed for single use and lacked validity or reliability evidence. Challenges associated with the interchange and definition of terms (i.e., outcomes, impacts, tool type) were common and may obscure partnership measurement and comparison. Very few of the tools identified in this study overlapped with tools identified by other, similar reviews. Partnership tool development, refinement and evaluation, including tool measurement and optimization, are key areas for future tools-related research., Conclusion: This large scoping review identified numerous, single-use tools that require further development and testing to improve their psychometric and scientific qualities. The review also confirmed that the health partnership research domain and its measurement tools are still nascent and actively evolving. Dedicated efforts and resources are required to better understand health research partnerships, partnership optimization and partnership measurement and evaluation using valid, reliable and practical tools that meet partners' needs., (© 2023. The Author(s).)

What Is Known on the Subject: Research has shown effectiveness of nonpharmacological interventions in improving or maintaining cognition, mood, functioning, self-efficacy and quality of life for persons with mild-to-moderate dementia (PWDs). These interventions are critical during the earlier stages of dementia. However, Canadian and international literature report underutilization of and difficulty accessing the interventions., What This Paper Adds to Existing Knowledge: To our knowledge, this is the first review that explored factors influencing seniors' utilization of nonpharmacological interventions in the earlier stages of dementia. This review contributed to the discovery of unique factors such as PWDs' beliefs, fears, perceptions, and acceptability of nonpharmacological interventions and environmental influences on intervention provision. PWDs' intervention uptake may appear as a matter of personal choices related to individuals' knowledge, beliefs and perceptions. However, the analysis of the research evidence suggests that PWDs' choices are shaped by environmental factors such as formal and informal caregiver support, acceptability and accessibility of nonpharmacological interventions, dementia care workforce, community's attitudes towards dementia and funding. The complex interplay among factors highlights the importance of targeting health promotion strategies at both individuals and their environments., What Are the Implications for Practice: The review findings feature opportunities for healthcare practitioners, including mental health nurses, in advocating for PWDs' evidence-informed decision-making and access to desired nonpharmacological treatments. Involvement of patients and families in care-planning through ongoing assessment of health and learning needs, as well as enablers and barriers to using interventions, continuing information provision, and personalized referrals to appropriate services can promote PWDs' rights to healthcare., Abstract: INTRODUCTION: Despite the significance of nonpharmacological interventions in optimal management of mild-to-moderate dementia, it remains unclear in the literature how persons with mild-to-moderate dementia (PWDs) view, understand and access nonpharmacological interventions., Aim: The purpose of this review was to explore the extent and nature of evidence concerning factors that influence the use of nonpharmacological interventions for community-dwelling seniors with mild-to-moderate dementia., Method: An integrative review was undertaken following Toronto and Remington (A step-by-step guide to conducting an integrative review, 2020)'s instruction which expanded Torraco (Human Resource Development Review, 2016, 15, 404)'s and Whittemore and Knafl (Journal of Advanced Nursing, 2005, 52, 546)'s guidance., Results: The review of 16 studies suggests that PWDs' use of nonpharmacological interventions is shaped by a complex interplay of various personal, interpersonal, organizational, community and political influences., Discussion: The findings highlight the complex, interrelated relationships among multiple factors and subsequent limitations of behaviour-oriented health promotion strategies. To assist PWDs in making healthier choices, health promotion strategies need to direct attention to both individuals' behaviours and environmental conditions impacting the behaviours., Implications for Practice: The findings of this review can inform multidisciplinary health practitioners' (including mental health nurses) practice with seniors living with mild-to-moderate dementia. We recommend actionable ways in which they can empower patients and their families in dementia management., (© 2023 The Authors. Journal of Psychiatric and Mental Health Nursing published by John Wiley & Sons Ltd.)

Background: The internet is an important source of information for many informal caregivers and patients living with cancer. A better understanding of how individuals use the internet to meet their informational needs is important for guiding intervention development., Objective: The objectives of this study were to develop a theory describing why individuals living with cancer use the internet to find information, characterize the challenges faced with existing web-based content, and provide recommendations for web-based content design., Methods: Adults (≥18 years) with a history of being patients with cancer or informal caregivers were recruited from Alberta, Canada. After providing informed consent, participants were engaged through digitally recorded one-on-one semistructured interviews, focus groups, a web-based discussion board, and emails. Classic grounded theory guided the study procedures., Results: A total of 21 participants took part in 23 one-on-one interviews and 5 focus groups. The mean age was 53 (SD 15.3) years. Breast, gynecological, and hematological cancers were the most common cancer types (4/21, 19% each). In total, 67% (14/21) of patients, 29% (6/21) of informal caregivers, and 5% (1/21) of individuals reporting both roles participated. Participants experienced many new challenges in their cancer journey and used the internet to become better oriented to them. For each challenge, internet searching attempted to address one or more of 3 key orientation questions: why the challenge was happening, what to expect, and options for managing it. Better orientation resulted in improved physical and psychosocial well-being. Content that was well laid out, concise, free of distractions, and that addressed the key orientation questions was identified as the most helpful in assisting with orientation. Creators of web-based content are encouraged to 1) clearly identify the cancer challenge and population the content is addressing, as well as the presence of any potentially distressing information; 2) provide versions of the content in different formats, including printer-friendly, audio, video, and alternative languages; 3) state who created the content, including the individuals, organizations, and processes involved; 4) place hyperlinks after the key orientation questions have been addressed; and 5) ensure that the content is optimized for discovery by search engines (ie, Google)., Conclusions: Web-based content plays an essential role for many living with cancer. Clinicians are encouraged to take active steps to help patients and informal caregivers find web-based content that meets their informational needs. Content creators also have a responsibility to ensure that the content they create assists and does not hinder those navigating the cancer journey. Research is needed to better understand the many challenges that individuals living with cancer face, including how they are temporally related. In addition, how to optimize web-based content for specific cancer challenges and populations should be considered an important area for future research., (©Maclean Thiessen, Shelly Raffin Bouchal, Patricia A Tang, Shane Sinclair. Originally published in JMIR Cancer (https://cancer.jmir.org), 17.05.2023.)

Inflammatory breast cancer (IBC), an understudied and lethal breast cancer, is often misdiagnosed due to its unique presentation of diffuse tumor cell clusters in the skin and dermal lymphatics. Here, we describe a window chamber technique in combination with a novel transgenic mouse model that has red fluorescent lymphatics (ProxTom RFP Nu/Nu) to simulate IBC clinicopathological hallmarks. Various breast cancer cells stably transfected to express green or red fluorescent reporters were transplanted into mice bearing dorsal skinfold window chambers. Intravital fluorescence microscopy and the in vivo imaging system (IVIS) were used to serially quantify local tumor growth, motility, length density of lymph and blood vessels, and degree of tumor cell lymphatic invasion over 0-140 h. This short-term, longitudinal imaging time frame in studying transient or dynamic events of diffuse and collectively migrating tumor cells in the local environment and quantitative analysis of the tumor area, motility, and vessel characteristics can be expanded to investigate other cancer cell types exhibiting lymphovascular invasion, a key step in metastatic dissemination. It was found that these models were able to effectively track tumor cluster migration and dissemination, which is a hallmark of IBC clinically, and was recapitulated in these mouse models.

Background: Heart failure (HF) is the fastest growing cardiovascular condition globally; associated management costs and hospitalizations place an immense burden on healthcare systems. Wearable electronic devices (WEDs) may be useful tools to enhance HF management and mitigate negative health outcomes., Objective: We aimed to perform a systematic review to examine the potential of WEDs to support HF self-care in ambulatory patients at home., Methods: Five databases were searched for studies published between 2007 and May 2022, including OVID MEDLINE, EMBASE (OVID), APA PsycINFO (OVID), Cochrane Central Register of Controlled Trials (OVID), and CINAHL Plus with Full Text (Ebsco). After 6210 duplicates were removed, 4045 records were screened and 6 were included for review (2 conference abstracts and 4 full-text citations). All studies used WEDs as 1 component of a larger intervention., Results: Outcome measures included quality of life, physical activity, self-efficacy, self-care, functional status, time to readmission, social isolation, and mood. Studies were of moderate to high quality and mixed findings were reported. Enhanced exercise habits and motivational behavior to exercise, as well as decreased adverse symptoms of fatigue and dyspnea, were identified in 2 studies. However, improvements in exercise capacity and increased motivational behavior did not lead to exercise adherence in another 2 studies., Conclusions: The findings from this review suggest that WEDs may be a viable health behavior improvement strategy for patients with HF. However, studies of higher quality, with the primary intervention being a WED, and consistent outcome measures are needed to replicate the positive findings of studies identified in this review., Competing Interests: The authors have no funding or conflicts of interest to disclose., (Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Accurate, consistent assessment of outcomes and impacts is challenging in the health research partnerships domain. Increased focus on tool quality, including conceptual, psychometric and pragmatic characteristics, could improve the quantification, measurement and reporting partnership outcomes and impacts. This cascading review was undertaken as part of a coordinated, multicentre effort to identify, synthesize and assess a vast body of health research partnership literature., Objective: To systematically assess the outcomes and impacts of health research partnerships, relevant terminology and the type/use of theories, models and frameworks (TMF) arising from studies using partnership assessment tools with known conceptual, psychometric and pragmatic characteristics., Methods: Four electronic databases were searched (MEDLINE, Embase, CINAHL Plus and PsycINFO) from inception to 2 June 2021. We retained studies containing partnership evaluation tools with (1) conceptual foundations (reference to TMF), (2) empirical, quantitative psychometric evidence (evidence of validity and reliability, at minimum) and (3) one or more pragmatic characteristics. Outcomes, impacts, terminology, definitions and TMF type/use were abstracted verbatim from eligible studies using a hybrid (independent abstraction-validation) approach and synthesized using summary statistics (quantitative), inductive thematic analysis and deductive categories (qualitative). Methodological quality was assessed using the Quality Assessment Tool for Studies with Diverse Designs (QATSDD)., Results: Application of inclusion criteria yielded 37 eligible studies. Study quality scores were high (mean 80%, standard deviation 0.11%) but revealed needed improvements (i.e. methodological, reporting, user involvement in research design). Only 14 (38%) studies reported 48 partnership outcomes and 55 impacts; most were positive effects (43, 90% and 47, 89%, respectively). Most outcomes were positive personal, functional, structural and contextual effects; most impacts were personal, functional and contextual in nature. Most terms described outcomes (39, 89%), and 30 of 44 outcomes/impacts terms were unique, but few were explicitly defined (9, 20%). Terms were complex and mixed on one or more dimensions (e.g. type, temporality, stage, perspective). Most studies made explicit use of study-related TMF (34, 92%). There were 138 unique TMF sources, and these informed tool construct type/choice and hypothesis testing in almost all cases (36, 97%)., Conclusion: This study synthesized partnership outcomes and impacts, deconstructed term complexities and evolved our understanding of TMF use in tool development, testing and refinement studies. Renewed attention to basic concepts is necessary to advance partnership measurement and research innovation in the field. Systematic review protocol registration: PROSPERO protocol registration: CRD42021137932 https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=137932 ., (© 2022. The Author(s).)

Background: Information needs are one of the most prevalent unmet supportive care needs of those living with cancer, including patients and their informal caregivers. Understanding how existing questionnaires for evaluating information needs have been developed is important for guiding appropriate use and informing future research. A literature review examining how information needs assessment questionnaires for use in the cancer context have been developed, with a specific focus on how questionnaire items have been identified, does not exist., Objective: This scoping review will examine how questionnaires for assessing the information needs of those living with cancer have been developed with special focus on how patients, informal caregivers, and health care professionals have been involved in the selection and identification of questionnaire items., Methods: This review will include published studies describing the development and validation of information needs assessment questionnaires for use in the oncology context. MEDLINE (Ovid), Embase (Ovid), CINAHL, Scopus, Web of Science, the Cochrane Database of Systematic Reviews, and PsycInfo will be searched. Articles published at any point up to the date of the search will be eligible for inclusion. One person will screen titles and abstracts, and 2 people will screen and extract data from full-text articles., Results: Results are expected to be available in early 2023. Summary tables and a narrative summary will be used to describe results., Conclusions: This scoping review will assist in identifying appropriate information needs assessment tools to incorporate into clinical and research contexts in oncology. It will also identify if additional information needs assessment tools are needed., International Registered Report Identifier (irrid): PRR1-10.2196/35639., (©Maclean Thiessen, Daranne Harris, Patricia Tang, Shelley Raffin Bouchal, Shane Sinclair. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 01.09.2022.)

Background: Paediatric palliative care provides supportive care to children with life-threatening or life-limiting illnesses throughout the disease trajectory. Up to 42% of children receiving palliative care in Canada will die within a freestanding paediatric hospice or designated end-of-life care bed. Few studies have assessed families' experiences of this care within freestanding paediatric hospices., Objectives: To find and describe literature relating to family experiences in paediatric hospice palliative care throughout the end-of-life care journey including grief and bereavement., Criteria: Inclusion criteria: Children antepartum to 18 years or older if on paediatric palliative care service. Research conducted in freestanding paediatric hospices that focused on families' experiences and perceptions of end-of-life and grief and bereavement care. Full-text articles available in English., Exclusion Criteria: Adult palliative and end-of-life care, respite care, palliative care provided in acute or community settings, professional perspectives, unexpected or sudden child death, pregnancy after loss., Sources of Evidence: Academic Search Complete, CINAHL, Cochrane Database of Systematic Reviews, Embase, PsycINFO, PubMed and Web of Science databases were searched from database inception until the present. Grey literature was also searched for relevant results., Charting Methods: The scoping review was guided by recommendations from Arksey and O'Malley and Levac et al ., Results: A total of 4250 papers were retrieved, of which 10 met the scoping review criteria. The majority of studies were conducted in the UK. Three major themes emerged: more supportive care for families including grief and bereavement support, the hospice experience itself and future research areas., Conclusions: There is little literature that focuses specifically on the needs of families within freestanding paediatric hospices. Further examination of the themes identified above provides an opportunity for future research., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Positive psychological well-being (PPWB) is generally associated with improved physical health, mental well-being, and healthy behaviors. However, it is not clear how PPWB differs in women with obesity or if improving PPWB will improve their health. The objective of this study was to summarize the evidence on PPWB in women with obesity., Method: A scoping review was conducted in APA PsycINFO, EMBASE, MEDLINE, Cochrane Central Register of Controlled Trials, CINAHL, SocINDEX, Family & Society Studies Worldwide, ProQuest Dissertations and Theses Global databases. Primary research studies, with an analysis of adult women with a BMI ≥30 kg/m 2 with measures of PPWB are included., Results: Thirty-two studies encompassing >57,000 women with obesity, measured constructs of PPWB included: self-esteem, life satisfaction, positive affect, social support, vitality, happiness, self-acceptance, and optimism. Most studies showed that PPWB was lower in women with obesity although this association dissipated in studies when health and negative social factors were considered. Improvements in PPWB were associated with weight loss and with successful lifestyle changes with and without weight loss. Positive psychological interventions (PPIs) were used to bolster psychological well-being. PPIs were associated with improved measures of self-esteem and well-being., Conclusions: Prospective longitudinal and intervention studies are required to understand how evaluating and fostering PPWB might support gender-informed obesity care., Competing Interests: The authors declare no conflict of interest., (© 2022 The Authors. Obesity Science & Practice published by World Obesity and The Obesity Society and John Wiley & Sons Ltd.)

Background: Advances in care have increased survival and improved outcomes of infants with complex and chronic diseases. These medically fragile infants require long-term hospitalization and depend on technology for survival. Parents of these infants experience stress and difficulties adapting to their parental role., Purpose: To present an account of parental experiences as they provided care for their hospitalized medically fragile infant., Methods: This study was part of a larger constructivist grounded theory study to provide a holistic understanding of the processes of care for medically fragile infants. For this sub-study, 21 parents of hospitalized medically fragile infants were recruited from a pediatric hospital in Western Canada. Parents participated in face-to-face, semi-structured interviews, which were transcribed and analyzed using initial and focused coding., Results: Parents of hospitalized medically fragile infants grieved the loss of parenting a healthy infant, and they experienced multiple stressors. Parents utilized various coping strategies to manage their grief and stressors. Some parents were unable to cope, which exacted a heavy toll on their physical and mental health. Parents recommended psychological support, access to physical activity, primary nursing, and health system navigators., Conclusions: Parental recommendations can inform the design of interventions for parents of hospitalized medically fragile infants.

Excessive activation of the thrombin receptor, protease activated receptor 1 (PAR1) is implicated in diverse neuropathologies from neurodegenerative conditions to neurotrauma. PAR1 knockout mice show improved outcomes after experimental spinal cord injury (SCI), however information regarding the underpinning cellular and molecular mechanisms is lacking. Here we demonstrate that genetic blockade of PAR1 in female mice results in improvements in sensorimotor co-ordination after thoracic spinal cord lateral compression injury. We document improved neuron preservation with increases in Synapsin-1 presynaptic proteins and GAP43, a growth cone marker, after a 30 days recovery period. These improvements were coupled to signs of enhanced myelin resiliency and repair, including increases in the number of mature oligodendrocytes, their progenitors and the abundance of myelin basic protein. These significant increases in substrates for neural recovery were accompanied by reduced astrocyte (Serp1) and microglial/monocyte (CD68 and iNOS) pro-inflammatory markers, with coordinate increases in astrocyte (S100A10 and Emp1) and microglial (Arg1) markers reflective of pro-repair activities. Complementary astrocyte-neuron co-culture bioassays suggest astrocytes with PAR1 loss-of-function promote both neuron survival and neurite outgrowth. Additionally, the pro-neurite outgrowth effects of switching off astrocyte PAR1 were blocked by inhibiting TrkB, the high affinity receptor for brain derived neurotrophic factor. Altogether, these studies demonstrate unique modulatory roles for PAR1 in regulating glial-neuron interactions, including the capacity for neurotrophic factor signaling, and underscore its position at neurobiological intersections critical for the response of the CNS to injury and the capacity for regenerative repair and restoration of function., (© 2021 Wiley Periodicals LLC.)

Background: Information has been identified as a commonly unmet supportive care need for those living with cancer (ie, patients and their friends and family). The information needed to help individuals plan their lives around the consequences of cancer, such as the receipt of health care, is an example of an important informational need. A suitable theory to guide the development of interventions designed to meet this informational need has not been identified by the authors., Objective: The aim of this study is to generate a grounded theory capable of guiding the development of interventions designed to assist those living with cancer in meeting their informational needs., Methods: Classic grounded theory was used to analyze data collected through digitally recorded one-on-one audio interviews with 31 patients with cancer and 29 friends and family members. These interviews focused on how the participants had accessed and used information to plan their lives and what barriers they faced in obtaining and using this information., Results: The theory that emerged consisted of 4 variables: personal projects, cancer as a source of disruption to personal projects, information as the process of accessing and interpreting cancer-related data (CRD) to inform action, and CRD quality as defined by accessibility, credibility, applicability, and framing. CRD quality as a moderator of personal project disruption by cancer is the core concept of this theory., Conclusions: Informational resources providing accessible, credible, applicable, and positively framed CRD are likely key to meeting the information needs of those affected by cancer. Web-based informational resources delivering high-quality CRD focused on assisting individuals living with cancer in maintaining and planning their personal projects are predicted to improve quality of life. Research is needed to develop and integrate resources informed by this theoretical framework into clinical practice., (©Maclean Thiessen, Shane Sinclair, Patricia A Tang, Shelley Raffin Bouchal. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 29.10.2020.)

Background: There is little concrete guidance on how to train current and future healthcare providers (HCPs) in the core competency of compassion. This study was undertaken using Straussian grounded theory to address the question: "What are healthcare providers' perspectives on training current and future HCPs in compassion?", Methods: Fifty-seven HCPs working in palliative care participated in this study, beginning with focus groups with frontline HCPs (n = 35), followed by one-on-one interviews with HCPs who were considered by their peers to be skilled in providing compassion (n = 15, three of whom also participated in the initial focus groups), and end of study focus groups with study participants (n = 5) and knowledge users (n = 10)., Results: Study participants largely agreed that compassionate behaviours can be taught, and these behaviours are distinct from the emotional response of compassion. They noted that while learners can develop greater compassion through training, their ability to do so varies depending on the innate qualities they possess prior to training. Participants identified three facets of an effective compassion training program: self-awareness, experiential learning and effective and affective communication skills. Participants also noted that healthcare faculties, facilities and organizations play an important role in creating compassionate practice settings and sustaining HCPs in their delivery of compassion., Conclusions: Providing compassion has become a core expectation of healthcare and a hallmark of quality palliative care. This study provides guidance on the importance, core components and teaching methods of compassion training from the perspectives of those who aim to provide it-Healthcare Providers-serving as a foundation for future evidence based educational interventions.

Motivational interviewing (MI) is an effective means of facilitating behavior change in a variety of health conditions. However, given its origins in western psychology, its utility in ethnic populations is unclear. Our objective was to examine the effectiveness of MI and its components in people of varying ethnicities and how they may experience MI. We undertook a narrative systematic review of the literature, searching only peer-reviewed research up until February, 2019 with participants who were: ≥ 18 years of age, belonging to an ethnic origin relevant to Canada's population, and had a health related concern (e.g. drug and alcohol addictions, chronic illness). Four thousand seven hundred and sixty-one citations were retrieved, and ultimately 61 met the inclusion criteria. Cultural acknowledgment and considerations with MI, when described, enhanced effectiveness of MI in most ethnic groups. The length and the number of sessions had no apparent influence on the success of MI. When examined, most study participants reported acceptance of the intervention; however, there were challenges, most notably for Chinese patients. MI can be effective in a variety of ethnic groups, particularly when cultural acknowledgement is included in the process.

Purpose: To understand contemporary experiences of pediatric health care professionals' (HCPs) caring for hospitalized Medically Fragile Infants (MFI) and their parents., Design and Methods: Convenience sampling was adopted to recruit 26 HCPs who provided care to MFI and their parents on inpatient units at a large tertiary pediatric hospital in Western Canada. Participants participated in either a focus group or individual face-to-face interview. Themes and concepts emerged during open and focused coding., Findings: HCPs encountered barriers to establishing relationships with parents, including: (a) intricate nature of MFI, (b) lack of social supports, (c) inconsistency, (d) moral distress, (e) burnout, and (f) struggle to gain control. HCPs utilized strategies to establish relationships with parents, including: (a) normalizing and building parental confidence, (b) tailoring care and being flexible, (c) providing parent care, and (d) optimizing communication., Conclusion: HCPs aimed to establish relationships built on trust with parents of MFI to empower and enable parents to care for their infants. The relationship was the vehicle to enhance the care provided and well-being of MFI. HCPs encountered barriers to establishing trusting relationships and utilized strategies to establish such relationships., Practice Implications: It is valuable to understand the importance that the parent-HCPs relationship plays in the care provided to hospitalized MFI and how lack thereof can lead to moral distress and burnout among HCPs. Increasing HCPs' awareness of barriers and strategies to the establishment of a trusting relationship with parents could help improve the collaborative relationship between parents and HCPs., (Copyright © 2020 Elsevier Inc. All rights reserved.)