Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood.

BACKGROUND: During the transition to adulthood, a common challenge that youth with a neurodisability may experience is learning how to navigate services in the adult care system. During this transition youth may rely on their families, including siblings, for support. However, delineation of sibling roles and responsibilities during this transition period are unclear. This study aims to identify the roles and responsibilities that siblings perceive to have with their sibling with a neurodisability during the transition to adulthood, and describe the decision-making process of how siblings chose these roles. METHODS: In this descriptive qualitative case study, siblings were eligible to participate if they were between 14 to 40 years old, had a sibling between 14 to 21 years with a childhood-onset neurodisability and spoke English. Semi-structured interviews augmented by techniques of photo elicitation and relational maps were conducted. Reflexive thematic analysis was applied to identify sibling roles, as well as the emotional and decision-making process associated with these roles. Our team partnered with siblings with lived experience in all study phases. RESULTS: Nineteen participants (median age = 19 years, range = 14 to 33 years) from 16 unique families were interviewed. Six unique roles were described: friend, role model/mentor, protector, advocate, supporter, or caregiver. The emotions that siblings experienced with each role, also known as emotional responsibility, were categorized into levels of low, medium or high. Siblings also described a four-phase decision-making process for their roles: (1) acquiring knowledge; (2) preparing plans; (3) making adjustments; and (4) seeking support. Intrapersonal characteristics, including personal identity, values and experiences, influenced roles assumed by siblings. CONCLUSIONS: Siblings identified needing support as they process their decisions and emotional responsibility in their roles when their sibling with a neurodisability is transitioning to adulthood. Resources should be developed or further enhanced to support siblings.

Canadian intensive care unit nurses' responses to moral distress during the COVID-19 pandemic, and their recommendations for mitigative interventions.

AIMS: To describe intensive care unit nurses' experiences of moral distress during the COVID-19 pandemic, and their recommendations for mitigative interventions. DESIGN: Interpretive description. METHODS: Data were collected with a purposeful sample of 40 Canadian intensive care unit nurses between May and September 2021. Nurses completed a demographic questionnaire, the Measure of Moral Distress-Healthcare Professionals survey and in-depth interviews. Quantitative data were analysed using descriptive statistics. Qualitative data were categorized and synthesized using reflexive thematic analysis and rapid qualitative analysis. RESULTS: Half of the nurses in this sample reported moderate levels of moral distress. In response to moral distress, nurses experienced immediate and long-term effects across multiple health domains. To cope, nurses discussed varied reactions, including action, avoidance and acquiescence. Nurses provided recommendations for interventions across multiple organizations to mitigate moral distress and negative health outcomes. CONCLUSION: Nurses reported that moral distress drove negative health outcomes and attrition in response to moral events in practice. To change these conditions of moral distress, nurses require organizational investments in interventions and cultures that prioritize the inclusion of nursing perspectives and voices. IMPLICATIONS FOR THE PROFESSION: Nurses engage in a variety of responses to cope with moral distress. They possess valuable insights into the practice issues central to moral distress that have significant implications for all members of the healthcare teams, patients and systems. It is essential that nurses' voices be included in the development of future interventions central to the responses to moral distress. REPORTING METHOD: This study adheres to COREQ guidelines. IMPACT: What Problem did the Study Address? Given the known structural, systemic and environmental factors that contribute to intensive care unit nurses' experiences of moral distress, and ultimately burnout and attrition, it was important to learn about their experiences of moral distress and their recommendations for organizational mitigative interventions. Documentation of these experiences and recommendations took on a greater urgency during the context of a global health emergency, the COVID-19 pandemic, where such contextual influences on moral distress were less understood. What Were the Main Findings? Over half of the nurses reported a moderate level of moral distress. Nurses who were considering leaving nursing practice reported higher moral distress scores than those who were not considering leaving. In response to moral distress, nurses experienced a variety of outcomes across several health domains. To cope with moral distress, nurses engaged in patterns of action, avoidance and acquiescence. To change the conditions of moral distress, nurses desire organizational interventions, practices and culture changes situated in the amplification of their voices. Where and on Whom Will the Research Have an Impact on? These findings will be of interest to: (1) researchers developing and evaluating interventions that address the complex phenomenon of moral distress, (2) leaders and administrators in hospitals, and relevant healthcare and nursing organizations, and (3) nurses interested in leveraging evidence-informed recommendations to advocate for interventions to address moral distress. What Does this Paper Contribute to the Wider Global Community? This paper advances the body of scientific work on nurses' experiences of moral distress, capturing this phenomenon within the unique context of a global health emergency. Nurses' levels of moral distress using Measure of Moral Distress-Healthcare Professional survey were reported, serving as a comparator for future studies seeking to measure and evaluate intensive care unit nurses' levels of moral distress. Nurses' recommendations for mitigative interventions for moral distress have been reported, which can help inform future interventional studies. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

CHAMPP4KIDS: Mixed methods study protocol to evaluate acceptability and feasibility of Parenting for Lifelong Health materials in a Canadian context.

BACKGROUND: Parents and caregivers play a key role in children's healthy development and well-being. Traditional parenting interventions promote positive parenting practices and are key to preventing child maltreatment. However, numerous barriers can limit access to programs, barriers which were further exacerbated by the COVID-19 pandemic. The Parenting for Lifelong Health group developed mass media and public health communication materials to promote positive caregiving behaviours on a population level. The Champions of Positive Parenting 4 Kids (CHAMPP4KIDS) study will examine the acceptability and feasibility of these materials for service providers and caregivers of children aged 2-6 years in Ontario, Canada. METHODS: This study will use a convergent mixed-methods design. Consenting service providers (n = 200) and caregivers (n = 100) will complete a quantitative survey to rate, rank and give feedback on Parenting for Lifelong Health tip sheets and social media ads. Caregivers will also complete self-report scales measuring depression and anxiety. We will hold focus group discussions with a sub-sample of surveyed providers (n = 40) and caregivers (n = 25). An adapted Trials of Improved Practices methodology will explore caregiver perspectives after implementing the tip sheets. Primary quantitative outcomes will be descriptive statistics of rankings, Likert Scale scores and descriptive analysis of caregiver depression and anxiety. Qualitative data will be analyzed using Rapid Qualitative Inquiry and triangulated through a convergent coding matrix. DISCUSSION: The Parenting for Lifelong Health COVID-19 parenting materials offer succinct, engaging parenting information in a mass media format that addresses some challenges associated with accessing in-person programming. The CHAMPP4KIDS study will provide mixed methods insights on the materials' acceptability and feasibility from different groups in a Canadian context, with a focus on marginalized families. The use of Trials of Improved Practices methodology could prove a useful tool for participant-led adaptation of existing parenting, early childhood development and other health intervention materials.

Longitudinal effectiveness of a woman-led, nurse delivered health promotion intervention for women who have experienced intimate partner violence: iHEAL randomized controlled trial.

BACKGROUND: Intimate partner violence (IPV) threatens the safety, health and quality of life of women worldwide. Comprehensive IPV interventions that are tailored, take a long-term view of women's needs, including health concerns, and maximize choice and control, have the potential to effectively address heath and safety concerns. Few such interventions have been tested, including in the Canadian context. METHODS: A parallel randomized controlled trial of adult (age 19 + years), English-speaking, Canadian women with histories of IPV randomized either to iHEAL, a tailored health promotion intervention delivered by Registered Nurses over 6-7 months, or to community service information (usual care control). Primary (Quality of Life, PTSD symptoms) and secondary outcomes (Depression, Confidence in Managing Daily Life, Chronic Pain, IPV Severity) were measured at baseline and 6, 12 and 18 months post-intervention via an online survey. Generalized estimating equations were used to test for differences by study arm in intention-to-treat (full sample) and per protocol (1 + iHEAL visit) analyses focussing on short-term (immediately post-intervention) and longer-term (1 year post-intervention) effects. Selected process evaluation data were summarized using descriptive statistics. RESULTS: Of 331 women enrolled, 175 were randomized to iHEAL (135 who engaged in 1 + visits) and 156 to control. Women who received iHEAL showed significantly greater short-term improvement in Quality of Life compared to the control group, with these effects maintained 1 year later. Changes in PTSD Symptoms also differed significantly by group, with weaker initial effects that were stronger 1 year post-intervention. Significant moderate, short- and longer-term group effects were also observed for Depression and Confidence in Managing Daily Life. IPV Severity decreased for both groups, with significant immediate effects in favour of the intervention group that grew stronger 1 year post-intervention. There were no changes in Chronic Pain. CONCLUSION: iHEAL is an effective, acceptable and safe intervention for diverse groups of women with histories of IPV. Trial results provide a foundation for implementation and ongoing evaluation in health care settings and systems. Delayed effects noted for PTSD Symptoms and IPV Severity suggest that longer-term assessment of these outcomes may be needed in trials of IPV interventions. TRIAL REGISTRATION: Clinicaltrials.gov ID NCT03573778 (Registered on June 29, 2018).

Parents' Experiences with Postpartum Support Groups using Videoconferencing: Perceptions of Safety in the Virtual Space.

PURPOSE: To explore new parents' experiences with web-based videoconferencing as a mechanism of offering postpartum virtual support groups. STUDY DESIGN AND METHODS: Virtual support sessions and individual interviews were conducted to explore participants' experiences with virtual postpartum groups. RESULTS: Thirty-seven parents participated in seven virtual support sessions and 19 participated in individual interviews. Participant narratives centered on perceptions of safety when engaging in virtual support groups. Tools within the virtual space (camera; mute) created a relational paradox which provided safeguards but also hindered the building of trust. Participants described negotiating the fear of harm and judgment within virtual spaces alongside feelings of security in connecting from the safety of their homes. CLINICAL IMPLICATIONS: The virtual environment provides a forum for new parents to access information and support and an avenue for engagement with maternal child nurses and care providers. Awareness of how parents perceive safety in the virtual environment is an important part of facilitating and structuring parent groups on videoconferencing platforms. Nurses should be familiar with videoconferencing technology and be able to guide parents. Experience facilitating virtual groups to ensure safety and security while providing needed support is a valuable nursing skill.

Examining How Postpartum Videoconferencing Support Sessions Can Facilitate Connections between Parents: A Poststructural and Sociomaterial Analysis.

Postpartum support for new parents can normalize experiences, increase confidence, and lead to positive health outcomes. While in-person gatherings may be the preferred choice, not all parents can or want to join parenting groups in person. Online asynchronous chat spaces for parents have increased over the past 10 years, especially during the COVID pandemic, when "online" became the norm. However, synchronous postpartum support groups have not been as accessible. The purpose of our study was to examine how parents experienced postpartum videoconferencing support sessions. Seven one-hour videoconferencing sessions were conducted with 4-8 parents in each group (n = 37). Nineteen parents from these groups then participated in semi-structured interviews. Feminist poststructuralism and sociomaterialism were used to guide the research process and analysis. Parents used their agency to actively think about and interact using visual (camera) and audio (microphone) technologies to navigate socially constructed online discourses. Although videoconferencing fostered supportive connections and parents felt less alone and more confident, the participants also expressed a lack of opportunities for individual conversations. Nurses should be aware of the emerging opportunities that connecting online may present. This study was not registered.

Critically appraising and utilising qualitative health research evidence in nutrition practice.

BACKGROUND: Evidence-based decision-making and practice recommendations are commonly based on findings from quantitative studies or reviews. In the present study, we provide an overview of how to incorporate findings from qualitative research into the evidence-based decision-making process. METHODS: To illustrate how qualitative evidence can be integrated into the decision-making process, we have outlined a clinical nutrition scenario and the process for sourcing credible evidence to inform decision-making. A qualitative health research study was selected and appraised using the Critical Appraisal Skill Programme (CASP) appraisal tool for qualitative research. Based on the results of the critical appraisal, the study quality is considered, and we discuss whether the qualitative evidence can be applied to practice. RESULTS: A detailed description of how the qualitative findings can be used conceptually and instrumentally in practice to address the clinical nutrition scenario is provided. CONCLUSIONS: Developing skills in critically appraising findings from qualitative studies will increase awareness and utilisation of this type of evidence in practice and policy, with a goal to ensure that patient/client perceptions are considered, leading to enhanced person-centred care or systems.

Effectiveness of nurse-home visiting in improving child and maternal outcomes prenatally to age two years: a randomised controlled trial (British Columbia Healthy Connections Project).

BACKGROUND: We investigated the effectiveness of Nurse-Family Partnership (NFP), a prenatal-to-age-two-years home-visiting programme, in British Columbia (BC), Canada. METHODS: For this randomised controlled trial, we recruited participants from 26 public health settings who were: <25 years, nulliparous, <28 weeks gestation and experiencing socioeconomic disadvantage. We randomly allocated participants (one-to-one; computer-generated) to intervention (NFP plus existing services) or comparison (existing services) groups. Prespecified outcomes were prenatal substance exposure (reported previously); child injuries (primary), language, cognition and mental health (problem behaviour) by age two years; and subsequent pregnancies by 24 months postpartum. Research interviewers were masked. We used intention-to-treat analyses. (ClinicalTrials.gov, NCT01672060.) RESULTS: From 2013 to 2016 we enrolled 739 participants (368 NFP, 371 comparison) who had 737 children. Counts for child injury healthcare encounters [rate per 1,000 person-years or RPY] were similar for NFP (223 [RPY 316.17]) and comparison (223 [RPY 305.43]; rate difference 10.74, 95% CI -46.96, 68.44; rate ratio 1.03, 95% CI 0.78, 1.38). Maternal-reported language scores (mean, M [SD]) were statistically significantly higher for NFP (313.46 [195.96]) than comparison (282.77 [188.15]; mean difference [MD] 31.33, 95% CI 0.96, 61.71). Maternal-reported problem-behaviour scores (M [SD]) were statistically significantly lower for NFP (52.18 [9.19]) than comparison (54.42 [9.02]; MD -2.19, 95% CI -3.62, -0.75). Subsequent pregnancy counts were similar (NFP 115 [RPY 230.69] and comparison 117 [RPY 227.29]; rate difference 3.40, 95% CI -55.54, 62.34; hazard ratio 1.01, 95% CI 0.79, 1.29). We observed no unanticipated adverse events. CONCLUSIONS: NFP did not reduce child injuries or subsequent maternal pregnancies but did improve maternal-reported child language and mental health (problem behaviour) at age two years. Follow-up of long-term outcomes is warranted given that further benefits may emerge across childhood and adolescence.

Advanced practice nursing in Europe-Results from a pan-European survey of 35 countries.

AIM: To report the results of a mapping exercise by the European Federation of Nurses on current advanced practice nursing frameworks and developments across Europe. DESIGN: Online, cross-sectional, questionnaire study. METHODS: An online questionnaire was distributed among 35 national nurses' associations across Europe in March 2021. The questionnaire solicited input on 60 items concerning key features of advanced practice nursing, intending to map existing developments and better understand the current state of advanced practice nursing in Europe. Data analysis used descriptive statistics, including counts and percentages, tabulation; open-text responses were handled with thematic synthesis techniques. RESULTS: The definition, sense-making and operationalization of advanced practice nursing vary across Europe. Important variations were noted in the definition and requirements of advanced practice nursing, resulting in different views on the competencies and scope of practice associated with this role. Importantly, the level of education and training required to qualify and practice as an advanced practice nurse varies across European countries. Furthermore, only 11 countries reported the existence of a national legislation establishing minimum educational requirements. CONCLUSION: Significant variation exists in how countries define advanced practice nursing and how it is regulated at academic and practice levels. More research is needed to clarify whether this variation results from designing models of advanced practice nursing that work in different contexts; and what impact a standardized regulatory framework could have to grow the volume of advanced practice nurses across Europe. IMPACT: The current paper exposes the lack of clarity on the development and implementation of advanced practice nursing across Europe. We found significant variation in the definition, recognition, regulation and education of advanced practice nurses. Our data are essential to policymakers, professional associations and employers to ensure a coordinated and systematic effort in the consistency and ongoing development of advanced practice nurses across Europe. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution applied; the participants were national nurses' associations.

Mothers' and birthing parents' experiences with 1-day cognitive behavioural therapy-based workshops for postpartum depression: A descriptive qualitative study.

WHAT IS KNOWN ABOUT THE SUBJECT?: One in five mothers and birthing parents are affected by postpartum depression (PPD), yet only a small proportion of those with PPD receive treatment. Given cost and accessibility barriers to treatment, brief therapies (e.g. 1 day) could help address PPD on a large scale, though understanding participants' unique experiences with this novel treatment will help guide its refinement and use. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This paper describes the experiences, perspectives and satisfaction of participants who attended a 1-day workshop for PPD. Participants appreciate being taught practical techniques and the receipt of social support from facilitators and other attendees in the group setting, while some recommended further 'booster sessions' to enhance effectiveness. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: One-day CBT-based workshops may be an effective, low-intensity treatment option that provides helpful skills and builds social networks for individuals with PPD. Additional post-workshop booster sessions may enhance participant satisfaction with this new treatment by providing a reinforcement of their learning and an opportunity to re-connect with other birthing parents. ABSTRACT: INTRODUCTION: Postpartum depression (PPD) affects up to one in five mothers and birthing parents. Understanding their perceptions of therapeutic interventions is key to their effectiveness and scalability. AIM: The aim of the study was to understand participants' experiences attending an in-person or online 1-day cognitive behavioural therapy (CBT)-based workshop for PPD and compare their experiences participating in either modality. METHOD: This descriptive qualitative study was embedded in two separate randomized controlled trials evaluating the effectiveness of 1-day CBT-based workshops for PPD delivered in-person or online. Responses were provided by 94 in-person and 95 online participants about their experiences. Content analysis was used to code and categorize the data. RESULTS: Participants appreciated learning skills to improve PPD symptoms and joining a community of individuals with shared experiences. Integrating practical coping techniques after the workshop was reported to be most useful, though some wanted additional post-workshop support. Online participants identified additional barriers to workshop engagement. DISCUSSION: Participants who attended either workshop found them to be valuable and effective. Participants valued psychoeducation, social connections and applying practical CBT techniques. IMPLICATIONS FOR PRACTICE: One-day CBT-based workshops may be an accessible treatment option for individuals with PPD, providing new skills and social support, though some prefer to receive additional post-workshop support.

Impact of health system governance on healthcare quality in low-income and middle-income countries: a scoping review.

INTRODUCTION: Improving healthcare quality in low-/middle-income countries (LMICs) is a critical step in the pathway to Universal Health Coverage and health-related sustainable development goals. This study aimed to map the available evidence on the impacts of health system governance interventions on the quality of healthcare services in LMICs. METHODS: We conducted a scoping review of the literature. The search strategy used a combination of keywords and phrases relevant to health system governance, quality of healthcare and LMICs. Studies published in English until August 2023, with no start date limitation, were searched on PubMed, Cochrane Library, CINAHL, Web of Science, Scopus, Google Scholar and ProQuest. Additional publications were identified by snowballing. The effects reported by the studies on processes of care and quality impacts were reviewed. RESULTS: The findings from 201 primary studies were grouped under (1) leadership, (2) system design, (3) accountability and transparency, (4) financing, (5) private sector partnerships, (6) information and monitoring; (7) participation and engagement and (8) regulation. CONCLUSIONS: We identified a stronger evidence base linking improved quality of care with health financing, private sector partnerships and community participation and engagement strategies. The evidence related to leadership, system design, information and monitoring, and accountability and transparency is limited.

Undergraduate Learners' Receptiveness to Feedback in Medical Schools: A Scoping Review.

Feedback from educators to learners is considered an important element of effective learning in medical school. While early studies were focused on the processes of providing feedback, recent work has showed that factors related to how learners receive feedback seems to be equally important. Considering that the literature on this topic is new in medical education, and studies are diverse and methodologically variable, we sought to conduct a scoping review to map the articles on receptiveness to feedback, to provide an overview of its related factors, to identify the types of research conducted in this area, and to document knowledge gaps in the existing literature. Using the Joanna Briggs Institute scoping review methodology, we searched four databases (CINAHL, Ovid, PubMed, and Web of Science) and screened 9120 abstracts, resulting in 98 articles for our final analysis. In this sample, 80% of studies on the feedback receiver were published in the last 10 years, and there is a vast variation in the studies' methodologies. The main factors that affect medical students' receptiveness to feedback are students' characteristics, feedback content, educators' credibility, and the learning environment. Feedback literacy is a very recent and rarely used term in medical education; therefore, an important area for further investigation. Lastly, we identified some gaps in the literature that might guide future research, such as studying receptiveness to feedback based on academic seniority and feedback literacy's long-term impacts on learning. Supplementary Information: The online version contains supplementary material available at 10.1007/s40670-023-01858-0.

Case study: breakthrough mpox infection in Aotearoa New Zealand and Australia after completed two-dose course of subcutaneous modified vaccinia Ankara (MVA-BN) vaccines.

BACKGROUND: In August 2022, in response to a global mpox outbreak, the World Health Organization recommended the Vaccinia vaccination for at-risk people. METHODS: Case study. RESULTS: We describe a case of a HIV-negative bisexual man who developed a symptomatic mpox infection 13weeks after completing a two-dose course of subcutaneous third-generation modified vaccinia Ankara vaccines. The case likely acquired his mpox infection in the USA; was diagnosed in Aotearoa, New Zealand; and was followed-up in Australia, as he was actively travelling during his infection. CONCLUSIONS: This case highlights the importance of maintaining clinical suspicion for mpox in people who present with consistent symptoms, even if they are fully vaccinated. Also, as he travelled around Aotearoa, New Zealand, and Australia during his infection, this case highlights how public health authorities and clinicians can cooperate across jurisdictional boundaries to support cases and minimise the risk of onward transmission.

"There's an Etiquette to Zoom That's Not Really Present In-Person": A Qualitative Study Showing How the Mute Button Shapes Virtual Postpartum Support for New Parents.

Virtual spaces that allow parents in the postpartum period to connect, support each other, and exchange information have been increasing in popularity. With the COVID-19 pandemic, many parents had to rely on virtual platforms as a primary means to connect with others and attend to their postpartum health. This study explored virtual postpartum support sessions through the web-based videoconferencing software, Zoom. Guided by feminist poststructuralism and sociomaterialism, we held seven virtual support sessions for parents caring for a baby 0-12 months in age, in Canada, and interviewed 19 participants about their experiences in the sessions. Our methodological approach allowed us to analyze discourses of (1) parenthood, (2) material realities of virtual environments, and (3) support and information on this virtual platform. The purpose of this research was to understand how technology influences postpartum support and learning through online videoconferencing for parents. Our findings document an overarching discourse of Zoom etiquette by which muting was a discursive practice that all participants used. The consistent use of the mute button while not talking structured conversation in virtual postpartum sessions and resulted in three themes: (1) minimizing disruptions; (2) taking turns; and (3) staying on task. The norm of using the mute button changed how parents received and gave support and information. Based on findings and broader literature, we discuss considerations for facilitation of virtual postpartum support sessions.

Protocol for the COVID-19 Wellbeing and Stress Study: a longitudinal study of parent distress, biological stress and child biopsychosocial development during the pandemic and beyond.

INTRODUCTION: The COVID-19 pandemic has had a unique impact on the mental health and well-being of pregnant individuals and parents of young children. However, the impact of COVID-19-related stress during pregnancy on early child biopsychosocial development, remains unclear. The COVID-19 Wellbeing and Stress Study will: (1) investigate the impact of different forms of prenatal stress experienced during the pandemic (including objective hardship, perceived psychological distress and biological stress) on child stress biology, (2) examine the association between child stress biology and child developmental outcomes, (3) determine whether child stress biology acts as a mechanism linking prenatal stress to adverse child developmental outcomes and (4) assess whether gestational age at the onset of the COVID-19 pandemic or child sex, moderate these associations. METHODS AND ANALYSES: The COVID-19 Wellbeing and Stress Study is a prospective longitudinal study, consisting of six time points, spanning from pregnancy to 3 years postpartum. The study began in June 2020, consisting of 304 pregnant people from Ontario, Canada. This multimethod study is composed of questionnaires, biological samples, behavioural observations and developmental assessments ETHICS AND DISSEMINATION: This study was approved by the Hamilton Integrated Research Ethics Board (#11034) and the Mount Saint Vincent University Research Ethics Board (#2020-187, #2021-075, #2022-008). Findings will be disseminated through peer-reviewed presentations and publications, community presentations, and electronic forums (social media, newsletters and website postings).

SUDEP: Living with the knowledge.

OBJECTIVE: To understand how knowledge of sudden unexpected death in epilepsy (SUDEP) impacted the lives of adult persons with epilepsy (PWE) and primary caregivers of both adults and children with epilepsy. METHODS: The principles of fundamental qualitative description guided this descriptive and exploratory qualitative study to document patients' and caregivers' perceptions and experiences. A purposeful sample of individuals (18 years or older) diagnosed with epilepsy or primary caregivers of PWE completed a single in-depth, semi-structured, one-to-one telephone interview. Categories of findings were developed using directed content analysis. RESULTS: A total of twenty-seven participants completed the study. This consisted of eight adult females and six adult males with epilepsy, ten female caregivers, and three male caregivers of PWE. All participants had become aware of SUDEP at least 12 months before their interview. Most were not informed about SUDEP by their treating neurologist and instead learned about SUDEP via alternative sources (e.g., the internet). All participants believed that knowledge of SUDEP outweighed the risks of being informed about it. Anxiety/fear related to SUDEP disclosure was generally not long-lasting. Caregivers of PWE were more directly impacted by SUDEP disclosure than adult PWE. Caregivers were more likely to make lifestyle/management changes due to learning about SUDEP (e.g., increased supervision and co-sleeping). Participants agreed that follow-up clinical support should be provided after SUDEP disclosure. CONCLUSIONS: Disclosure of SUDEP risk may have more significant impacts on caregivers of PWE than adult PWE in the form of lifestyle changes and epilepsy management. After SUDEP disclosure, follow-up support should be offered to PWE and their caregivers, which should be incorporated into future guidelines.

Providers' perspectives of the neonatal intensive care unit context and care provision for adolescent parents: an interpretive description.

BACKGROUND: The neonatal intensive care unit (NICU) is a complex care environment, with the NICU patient population among the most vulnerable in a hospital setting. Adolescent parents are a unique group within the broader NICU parent population and admission of their infant to the NICU contributes to an already complex situation as adolescent pregnancy and parenting is often associated with a range of psychosocial challenges. How the NICU care context influences care provision for adolescent parents is a significant gap in the NICU parenting and support discourse. Therefore, this study aimed to explore health and social care providers' perspectives of the NICU care context and how providers perceive the context as influencing the experiences of adolescent parents in the NICU. METHODS: This was a qualitative, interpretive description study design. In-depth interviews were conducted with providers, including nurses and social workers, caring for adolescent parents in the NICU. Data was collected between December 2019 and November 2020. Data were analyzed concurrently with data collection. Constant comparison, analytic memos, and iterative diagramming techniques were used to challenge developing analytic patterns. RESULTS: Providers (n = 23) described how the unit context influenced care provision as well as experiences for adolescent parents. We learned that having a baby in the NICU was perceived by providers as a traumatic experience for parents - impacting attachment, parenting confidence and competence, and mental health. Environmental factors - such as privacy and time - and perceptions that adolescent parents are treated differently in the NICU were also seen as influencing this overall experience. CONCLUSIONS: Providers involved in the care of adolescent parents in the neonatal intensive care unit described the distinctiveness of this group within the broader parent population and how quality of care may be impacted by contextual factors as well as experiences of age-related stigma. Further understanding of NICU experiences from the parents' perspectives are warranted. Findings highlight opportunities for strengthened interprofessional collaboration and trauma- and violence-informed care strategies within the neonatal intensive care environment to mitigate the potential negative influence of this experience and improve care for adolescent parents.

Decision Analysis in SHared decision making for Thromboprophylaxis during Pregnancy (DASH-TOP): a sequential explanatory mixed-methods pilot study.

OBJECTIVES: To gain insight into formal methods of integrating patient preferences and clinical evidence to inform treatment decisions, we explored patients' experience with a personalised decision analysis intervention, for prophylactic low-molecular-weight heparin (LMWH) in the antenatal period. DESIGN: Mixed-methods explanatory sequential pilot study. SETTING: Hospitals in Canada (n=1) and Spain (n=4 sites). Due to the COVID-19 pandemic, we conducted part of the study virtually. PARTICIPANTS: 15 individuals with a prior venous thromboembolism who were pregnant or planning pregnancy and had been referred for counselling regarding LMWH. INTERVENTION: A shared decision-making intervention that included three components: (1) direct choice exercise; (2) preference elicitation exercises and (3) personalised decision analysis. MAIN OUTCOME MEASURES: Participants completed a self-administered questionnaire to evaluate decision quality (decisional conflict, self-efficacy and satisfaction). Semistructured interviews were then conducted to explore their experience and perceptions of the decision-making process. RESULTS: Participants in the study appreciated the opportunity to use an evidence-based decision support tool that considered their personal values and preferences and reported feeling more prepared for their consultation. However, there were mixed reactions to the standard gamble and personalised treatment recommendation. Some participants could not understand how to complete the standard gamble exercises, and others highlighted the need for more informative ways of presenting results of the decision analysis. CONCLUSION: Our results highlight the challenges and opportunities for those who wish to incorporate decision analysis to support shared decision-making for clinical decisions.

Life after SUDEP: Experiences of traumatic loss and growth.

PURPOSE: To understand the experiences of bereaved relatives of individuals who passed due to sudden unexpected death in epilepsy (SUDEP) and to explore the impacts of death in their lives. METHODS: The principles of fundamental qualitative description informed all design decisions. Stratified purposeful sampling included 21 bereaved relatives (parent, sibling, or spouse/partner), aged at least 18 years, of persons who passed away because of SUDEP. In-depth one-to-one interviews were conducted. Directed content analysis was used to code, categorize, and synthesize the interview data. RESULTS: There was some criticism of emergency response and medical professionals involved in providing insensitive or poor care immediately after SUDEP occurred. Personal hardships described by participants following SUDEP included loss of personal identity, feeling depressed, experiencing guilt, having panic attacks, requiring therapy, as well as having difficulty with anniversaries, dates, and cleaning up a child's room. Bereaved spouses and parents in particular spoke of experiencing challenges in maintaining other relationships following the death. Some participants spoke of experiencing increased financial hardships. Ways of coping included keeping oneself busy, honoring the memory of the loved one, relying on friends and families, and engaging in advocacy/community work, including raising awareness on epilepsy and SUDEP. CONCLUSIONS: Sudden unexpected death in epilepsy affected several aspects of the day-to-day lives of bereaved relatives. Though methods of coping were similar to the usual strategies adopted by all bereaved relatives, advocacy work related to raising awareness about epilepsy and SUDEP was unique to this group. Guidelines on SUDEP should ideally include recommendations for trauma-informed support and assessment for depression and anxiety to the bereaved relatives as well.