The web-based BeUpstanding Champion Toolkit was developed to support work teams in addressing the emergent work health and safety issue of excessive sitting. It provides a step-by-step guide and associated resources that equip a workplace representative—the champion—to adopt and deliver the 8-week intervention program (BeUpstanding) to their work team. The evidence-informed program is designed to raise awareness of the benefits of sitting less and moving more, build a supportive culture for change, and encourage staff to take action to achieve this change. Work teams collectively choose the strategies they want to implement and promote to stand up, sit less, and move more, with this bespoke and participative approach ensuring the strategies are aligned with the team’s needs and existing culture. BeUpstanding has been iteratively developed and optimized through a multiphase process to ensure that it is fit for purpose for wide-scale implementation.The study aimed to describe the current version of BeUpstanding, and the methods and protocol for a national implementation trial.The trial will be conducted in collaboration with five Australian workplace health and safety policy and practice partners. Desk-based work teams from a variety of industries will be recruited from across Australia via partner-led referral pathways. Recruitment will target sectors  that are of priority to the policy and practice partners. A minimum of 50 work teams will be recruited per priority sector with a minimum of 10,000 employees exposed to the program. A single-arm, repeated-measures design will assess the short-term (end of program) and long-term (9 months postprogram) impacts. Data will be collected on the web via surveys and toolkit analytics and by the research team via telephone calls with champions. The Reach, Effectiveness, Adoption, Implementation, and Maintenance Framework will guide the evaluation, with assessment of the adoption/reach of the program (the number and characteristics of work teams and participating staff), program implementation (completion by the champion of core program components), effectiveness , and maintenance (sustainability of changes). There will be an economic evaluation of the costs and outcomes of scaling up to national implementation, including intervention affordability and sustainability.The study received funding in June 2018 and the original protocol was approved by institutional review board on January 9, 2017, with national implementation trial consent and protocol amendment approved March 12, 2019. The trial started on June 12, 2019, with 48 teams recruited as of December 2019.The implementation and multimethod evaluation of BeUpstanding will provide the practice-based evidence needed for informing the potential broader dissemination of the program.Australian New Zealand Clinical Trials Registry ACTRN12617000682347; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372843&isReview=true.DERR1-10.2196/15756 Only vesit less .Sitting time can be strongly contextually driven, dictated by the environmental and social settings in which it occurs . For manWithin this context, the Stand Up Australia collaborative research program was developed . Its aimtrain-the-champion approach was used as workplace champions have been shown to be critical to the success of workplace interventions, acting as role models and drivers for staff participation and work team change [The no-cost, web-based BeUpstanding Champion Toolkit  providesm change -32. ThisThe translation of what has been learned from the Stand Up Australia intervention trials to the BeUpstanding program has involved multiple, iterative phases . These pPlan, Do, and Review). The low cost/no cost requirement also meant that sit-stand workstations, which have been shown to effectively reduce workplace sitting (particularly when part of a multicomponent approach) [Phase 1, described in detail elsewhere , involvepproach) , are notPhase 2 involved a quantitative and qualitative evaluation of a small-scale pilot of the beta (test) version of the toolkit . Seven tThe learnings from phase 2 then informed the optimization of the toolkit (phase 3) to ensure it was fit for purpose for an implementation trial. Phase 3 included the development of a web-based, user-friendly onboarding system (to both promote the toolkit and enable champions to sign up for the toolkit) using human-centered design principles , enhancesoft launch of the program, with over 100 champions enrolling in the program during this period (September 2017 to May 2019). Several key learnings were gained from these early adopters. Firstly, despite the minimal promotion during the soft launch, there was strong uptake of the program, with champions enrolled from throughout Australia and across multiple sectors. This provides strong indication that there is an industry need for a program such as BeUpstanding. Secondly, workplaces were at different stages of readiness, with some champions wanting only to use select program materials  to help raise awareness of the importance of sitting less and moving more, whereas others were ready to run the full program. Thirdly, there was wide variation in how champions engaged with the toolkit, measured by the number of log-ons, with some champions repeatedly logging on throughout the program and others logging on rarely and/or infrequently. Finally, we found that although the toolkit was designed well for delivery by a single champion to their team of workers, it was not sufficiently flexible for larger organizations with large workplaces. It was identified that in a number of instances, there was a combined team formed of several teams led by champions who each adopted more nuanced roles (such as oversight without necessarily directly intervening on staff). Adaptations to the toolkit were made accordingly to suit a range of toolkit user roles.This updated version was tested via a These key learnings, which were complemented by discovery interviews and in-depth case studies with select participants , were used to inform further optimization of the program and toolkit and the protocol development for the national implementation trial of the BeUpstanding program (phase 4). Adaptions were done taking into account considerations from multiple perspectives, including the end users, the partners, the researchers, and the financial constraints ,40. The team. There are three phases to the program  and five steps as part of the BeUpstanding program (training) on the purpose of each step and task and resources to support the implementation of each task. As part of the implementation trial, champions will receive further training via coaching calls. The most critical step of the program is the staff workshop (Step 3.3). This step is designed to get everyone in the work team on board in terms of why and how the team can BeUpstanding together. In line with participatory design principles [The BeUpstanding program is designed to be implemented within a workplace  by a champion to their work team (colocated members of the workplace) of which the champion is also a member. Larger workplaces may run BeUpstanding by having several champions deliver the intervention to their teams concurrently. For the purposes of accrual targets and statistical analyses, these multiple teams are counted as one combined  program . Each stinciples , work teinciples , are proStand Up, Sit Less, Move More. Stand Up is a prompt to break up long periods of sitting, Sit Less is a prompt to reduce overall sitting time throughout the day by swapping some sitting with either standing or moving, and Move More is a prompt to increase physical activity  throughout the day. Increased activity and decreased sitting are primarily targeted through organizational, environmental, and social approaches. Messaging throughout the resources encourages regular postural shifts and reminders to listen to your body in recognition that there are also adverse outcomes associated with prolonged unbroken standing [The program’s behavioral targets are to achieve an even 50:50 split between sitting and nonsitting  activities at work and to alternate posture at least every 30 min between sitting and upright (or vice versa)—consistent with public, occupational, and clinical guidelines -45. To sstanding -48. No sThe BeUpstanding program is delivered via the BeUpstanding Champion Toolkit hosted on the BeUpstanding website . The webadoption/reach of the program (the number and characteristics of work teams and participating staff), program implementation (completion by the champion of core program components), effectiveness , and maintenance (sustainability of changes). The implementation trial is funded by a National Health and Medical Research Council (NHMRC) of Australia Partnership Project Grant (number 1149936), which includes cash and/or in kind support from the five partners (see below). Ethical approval was gained by The University of Queensland Human Research Ethics Committee . The trial was prospectively registered on May 12, 2017 (ACTRN12617000682347), before the soft launch of the program and last updated on the June 11, 2019. All participants will provide informed consent to participate.The aim of this study is to evaluate the BeUpstanding program in the context of a national implementation trial. The research questions to be answered are those important to informing the dissemination (phase 5) : in partA single-arm design will be used to evaluate the BeUpstanding program, with repeated cross-sectional evaluations at preprogram (0 weeks), end of program , and at 9 months postprogram (approximately 12 months post sign up). Repeated cross-sectional evaluations provide a flexible evaluation protocol  that canteam when the intervention is concurrent and within a workplace as per the criteria; otherwise, separate teams will be permitted to participate. Each champion will invite all employees within their work team to participate in the program and its evaluation. All workers invited will be considered eligible unless they indicate within the staff survey that they are unable to currently walk or stand for at least 10 min without an assistive device or requiring assistance from another person. Accrual targets have been set at 50 or more work teams per priority sector and 10,000 or more staff exposed to the program in total (see sample size). Performance against these accrual targets will be reviewed at the quarterly steering committee meetings, with the promotion and marketing plan adapted as required to ensure targets are met.On the basis of data reported by the champion as part of the web-based registration process, eligible Australian-based work teams will be those who had not run the BeUpstanding program previously with a minimum of five staff members, job roles or tasks that predominantly involve desk-based work, and a staff member willing to perform the duties of a workplace champion. Champions must also be planning to run the program within the recruitment window. For large organizations, including those located across numerous sites, multiple work teams from the one organization will be eligible to participate. These will be treated as a single combined push via an awareness raising event, will build on and coordinate with existing communication channels and resources from the partners and participating institutes, including social media, web links, email listservers, newsletters, workplace health promotion and occupational health networks, conferences, and workshops.The implementation trial will be conducted in partnership with five Australian workplace health and safety policy and practice organizations: Safe Work Australia, Comcare, Queensland Office of Industrial Relations, The Victorian Health Promotion Foundation , and Healthier Workplace Western Australia. These organizations are responsible for developing, implementing, and/or promoting Australian workplace health and safety policy. Each partner has committed to endorse and promote the toolkit across their relative jurisdictions. Desk-based employees from a wide cross-section of industries will be targeted, inclusive of sectors collectively identified as priorities by the partners . To ensure efforts are coordinated, a detailed action-mobilization plan will be developed with the partners. The plan, which will include an annual promotional The BeUpstanding website  is desigOutcome and process data and the characteristics of the workplaces, champions, and staff taking part in the implementation trial will be collected via the dedicated, stand-alone BeUpstanding website  and by the project manager , as outlined in The promotional activities undertaken by partners will be recorded at the 6-weekly partner meetings, with their impact on registrations tracked through the analytics in the toolkit website. The promotional pathways will be tracked through URL identifiers, through Google Analytics, and via champion self-reporting through the champion profile survey. Factors potentially influencing uptake and engagement with the program  will also be tracked via the registration survey and implementation checks. To ensure minimum data accrual targets are met, the project manager will follow up with champions (via email/phone) where necessary to encourage and support data collection.The project manager will have a minimum of five telephone contacts with the champion across the implementation trial evaluation: (1) recruitment, (2) confirmation of consent and explanation of next steps, (3) as soon as possible following the staff workshop, (4) at the end of the program, and (5) 9 months after the end of the program. Focus groups will be undertaken with a subsample of consenting staff from participating teams (n was approximately 15) at the end of the program to assess their perspectives on the processes and outcomes of the program. A mix of teams who made small/no, midrange, and large improvements and from different sectors will be purposively sampled, with focus groups conducted either in person or on the web via a virtual meeting room.Outcomes and measures are shown in Work team characteristics to be measured include organizational size, workplace location (postcode), industry, and team size. Team size is asked initially on the registration survey and confirmed by the project management team. Team size is visibly displayed on the feedback reports  for champions, and champions have the opportunity to modify their team size within their individual profile page. To assess eligibility and inform accrual targets, information on sector, job roles, and proportion of the team undertaking desk-based work will also be assessed. To understand the health and well-being culture of the work team, champions will be asked if their team is currently participating in any other workplace wellness/health promotion programs, the everyday interest of the team in health and well-being , the team’s motivation to sit less and move more at work , and their team’s level of stress . Workplace readiness for change will be assessed via the context, change efficacy, and change-related effort subscales of the Workplace Readiness Questionnaire [ionnaire . The worionnaire , will beChampion characteristics to be measured include sex; age (years), job classification , and job title (open ended). Champions will also be asked if they have a Health and Safety role in their workplace, whether they have done any training in workplace health programs before, and whether they have delivered and/or evaluated a workplace health program before, with responses of yes, no, and unsure for each item. Champions will be asked what they hope to achieve with the program, an also to describe their current workplace culture in terms of sitting, standing, and moving .The extent of participation of staff in the various BeUpstanding activities will be determined from the champion-reported team size, and champion-reported numbers or percentages participating in BeUpstanding events . Staff characteristics to be collected via the staff survey include age, sex, education, job classification, work hours, and the number of days in the last week where they had done a total of 30 min or more of physical activity, which was enough to raise their breathing rate . Staff wThe primary implementation outcome is program completion. At a minimum, successful completion is considered as completing all the core elements of the program . Secondar=0.74, 95% CI 0.51 to 0.87) and criterion validity  against workplace sitting in bouts of 30 min or more as recorded by the activPAL3 [The primary effectiveness outcome is self-reported workplace sitting time. This will be measured by the Occupational Sitting and Physical Activity Questionnaire (OSPAQ) , which activPAL3 .Participants will be asked “if you were given a choice at work, what percentage of the time would you want to spend: sitting, standing, moving.” Activity preference alignment at work will be calculated as the absolute value of the difference between their preferred behavior and their self-reported behavior. The alignment scores for sitting, standing, and moving each theoretically range from 0 (desired and performed are exactly the same) to 100 (desiring 100% and doing 0% or vice versa) .walks the talk when it comes to modeling standing and moving more at work; and whether their work team has a culture that supports standing and moving. These five items will be used to create an organizational social norms score.In line with the measure used in the pilot study , staff wenablers score.Staff will be asked (yes/no) whether they believe that too much sitting is detrimental to their health and well-being, whether a dynamic work environment is beneficial to their productivity, whether they want to sit less at work, and whether they have access to a height-adjustable desk. These four items will be used to create an weird if I sat less at work, my health prevents me from standing and moving more at work, and I need prompting to remember to sit less at work. Scores from these items will be used to create a barriers score. Participants will also be asked an open-ended question on any other factors that are preventing them from being able to sit, stand, or move at their desired levels at work.Participants will be asked on a 5-point Likert scale (1=strongly disagree to 5=strongly agree) the extent to which they agree or disagree with seven statements regarding perceived barriers to sitting less and moving more at work: I am too busy to sit less at work, I worry that I would be perceived as being unproductive if I sat less at work, I need new equipment  to support me to sit less at work, the tasks I have to do in my job prevent me from being able to sit less at work, I worry that I would be perceived as strategy use score.Participants will be provided with a menu of common strategies that have been used to promote standing up, sitting less, and moving more in the desk-based environment inclusive of those promoted in the BeUpstanding resources ,18,59 anSelf-rated job performance  and job Musculoskeletal symptoms in the last week will be measured using 3-items adapted from the Nordic Musculoskeletal Questionnaire ,64 to asThe experience of any adverse events associated with program participation will be asked of both champions and staff.Feedback on the BeUpstanding program will be sought from both champions and staff using fixed-option questions and qualitatively via open ended questions and qualitative interviews (in a subsample). Questions will cover program awareness, enjoyment, satisfaction, and potential for improvement. At the end of program, the staff survey will gather staff perceptions of the impact of the BeUpstanding program  on five success dimensions: the culture in their work team around sitting, standing, and moving; their knowledge of the benefits of sitting less; their attitudes toward sitting, standing, and moving; their awareness of their sitting behavior; and their activity outside of work. Champions will be asked to report, using a 5-point Likert scale , their perception of the extent to which the program raised awareness of the benefits of sitting less in the team, built a culture in their work team that supports sitting less and moving more, and reduced the amount their team engaged in prolonged unbroken sitting time. Adaptions and modifications to the program or program resources by the champions will be collected and recorded through the scheduled implementation checks.At postprogram assessment (approximately 9 months after the 8-week program completion), champions will be interviewed to understand current workplace policies and practices related to sitting less and moving more and ongoing or new BeUpstanding strategy use. All staff will be sent the maintenance survey (a repeat of the baseline staff survey) to understand the sustainability of any changes.The economic evaluation will address the costs and outcomes of scaling up to national implementation, including intervention affordability and sustainability. The economic analysis will be undertaken from a societal perspective, but with the major focus on a workplace perspective (covering both costs and benefits to employers and employees). The study design lends itself to a cost-outcome description as a full economic evaluation such as cost-effectiveness analysis would require a control arm. The primary economic analysis will comprise the analyses of costs, outcomes, and the relationship between costs and outcomes. Detailed pathway analysis will be used to identify all resource use associated with the intervention delivery. The intervention will be assumed to be operating in steady state , all costs associated with preplanning and development will be excluded. The included costs will relate to workplace recruitment  and intervention delivery . Data on the strategies adopted by individual work teams (including estimated costs) will be collected via the implementation checks. All resources will be valued in Australian dollars for the 2019 reference year. The economic outcomes for the implementation study will be presented as total costs, average costs per work team, and per work team of different size. Analysis of who incurs the associated costs  will be undertaken to assess intervention affordability and sustainability.team clustering. The primary endpoint is the end of program (approximately 8 weeks). The pragmatic aspects of the champion-led collection of anonymous data from staff within a workplace means the staff surveys will be sent out to all staff who are team members at the time in a repeated cross-sectional fashion. Most are likely a core cohort sent all surveys (not known to the research team) who may respond to none or any number of the three surveys. In addition, some team members will be added or lost with workforce turnover. Accordingly, the evaluation will consist of assessing both changes within baseline responders who are followed up over time, and as this may be a select motivated subset, also assessing time trends in all evaluable cases (responders to any survey). Time trends will be considered both unadjusted and adjusting for potential compositional differences between responders at each assessment (because of variations in team membership with workforce turnover and who responds to each survey). To evaluate sensitivity of conclusions to missing data handling, multiple imputation analyses will also be performed. Team-level variation in effectiveness will be considered. If applicable, then program engagement, characteristics of the work teams and workplace champions, and the timing (month/year) of the intervention will be explored as reasons for the differential effectiveness.Adoption, reach, and implementation outcomes will be described overall and within each priority sector. Effectiveness outcomes will also be evaluated overall and within each priority sector, with all work teams that are located in multiple sectors  examined as part of every sector to which they belong. Effectiveness outcomes collected at the end of program only from champions and/or staff  will be described. Effectiveness of the intervention on the primary outcome and secondary outcomes (continuous) collected repeatedly in the staff surveys will be assessed using mixed models that account for nonindependence in the form of individuals with repeated observations  and Qualitative data from the focus groups with staff  and semistructured interviews with champions (maintenance—use of policies and practices) will be audio-recorded and transcribed verbatim. Data from focus groups and champion interviews will be analyzed separately. Consistent with the recognized guidelines for qualitative data analyses , two memFor the primary effectiveness outcome (work sitting), the minimum difference of interest will be 20 min per 8 hours at work, which is equivalent to two-thirds of the effect in the pilot (30 min/8 hours)  and whatFunding for the trial was obtained from June 1, 2018, to May 31, 2021. The protocol for the data collection was originally approved by the institutional review board on January 9, 2017, with the national implementation trial consent and protocol amendment approved on March 12, 2019. The start date for the trial was June 12, 2019. As of December 2019, 48 teams have been recruited into the trial.Desk-based workers spend on average an estimated 70% to 80% of their workday sitting , puttingAs an implementation study, there are some inherent limitations. The use of a single-group, pre- to poststudy design is primary among these. A randomized controlled trial (RCT) design was considered, as this design would provide more robust effectiveness outcomes. However, an RCT would not provide better data for the reach, adoption, and implementation outcomes. It was also unclear how to conduct an RCT while preserving the key intervention model being tested of a workplace champion delivering and evaluating the intervention, particularly given the BeUpstanding toolkit is already live and freely available. Experience from the pilot and early adopters phases (phases 2 and 3) led us to expect that we would not be able to recruit champions willing to act as controls and complete all the evaluation but receive none of the intervention (even if they received a delayed intervention). Even the evaluation requires a reasonable amount of effort on the part of the workplace champion: researchers have no contact with the staff. Anyone can sign up to the toolkit  meaning contamination would be very difficult to control in those who sign up and are allocated to the control arm. We would also need to expend significant resources tailoring the toolkit to perform the evaluation but not the delivery intervention functions for those champions whose teams were allocated to a control condition. Therefore, on balance, it was considered that the pre-post design was the most appropriate to evaluate the implementation trial.Providing a menu of options and supporting work teams to collectively choose which intervention strategies will work best for them is a key strength of the program, with findings likely to provide key insights into possible higher order strategies to effectively support workers to sit less and move more , but thi


Whenever parents lose their child, it is an enormously emotionally stressful situation for the family, regardless of whether the child is a stillborn or dies later in life. The earlier this painful loss occurs, the more precious becomes every opportunity for the family to spend with their child, providing care as well as saying goodbye , 2.The evidence base in pediatric palliative care is not robust and there is even more paucity of evidence with regard to peri- and neonatology. Yet, palliative care of newborns and grief counseling of families differ significantly from other pediatric palliative care situations with regard to the following aspects –9. In caAlbeit these fundamental medical and psychosocial specific issues in perinatal palliative care, up to 2016 professional caregivers in German-speaking countries could neither draw upon evidence nor consensus-based national recommendations for this unique care situation. Our recommendations for palliative care and grief counseling in peri- and neonatology are intended as information and orientation for multidisciplinary care teams and counselors who assist (expectant) parents in these exceptional situations. The purpose is to provide practical guidance and standardization in support and care of newborns in palliative care and their families. The prenatal period, the birth, as well as the time after the death of the child are explicitly included.The present recommendations do not claim to be able to answer all questions. They rather aim at serving as an orientation, encouraging the international discussion as well as triggering continuous development. They herein refer to situations that may run a similar course, deliberately leaving room for individual adaptation, accommodating the varying needs of affected parents.We present a short summary of the German recommendations for palliative care and grief counseling in peri- and neonatology and their development process.Given that palliative care is practiced in a multi-disciplinary approach, these recommendations have been compiled with a participatory approach involving representatives of various professions and specialist disciplines, involved in perinatal care and counseling, as well as bereaved parents. The German expert panel named “The PaluTiN group”  was formed in 2016 and came together under the auspices of the German National Association “'Das frühgeborene Kind' e.V.” in order to develop a useful guidebook for contemporary palliative care and grief counseling in the perinatal and neonatal period.This expert panel was composed of a convenient sample of 12 German speaking members and consisted of 2 neonatologists/palliative care physicians, 1 palliative care physician, 1 palliative care & neonatal intensive care nurse, 1 sociologist, 1 grief counselor in neonatology, 1 clinical ethicist, 1 midwife, 1 specialist in gynecology, obstetrics & perinatology, 1 theologian/chaplain, and 2 parent representatives.The “PaluTiN group” included experts from a range of different regions of Germany and from Switzerland, with clinical experience in the fields of perinatology, palliative care, bereavement interventions, ethics, and/or pastoral care. They were identified either through their publication and citation record, or through contacts from the professional network of the German National Association “'Das frühgeborene Kind' e.V.”, the German Association for Neonatology and Pediatric Intensive Care, the German Association for Palliative Medicine, or the German Society for Obstetrics and Gynecology.Respectively, the composition of members of the expert panel was rooted in the central principles of palliative care of working together interdisciplinarily and interprofessionally, integrating the values and life goals of the families concerned. For detailed information regarding all expert panel members and their contribution to different subgroups representing 10 themes of high clinical relevance (see below) please see For the development process a modified Delphi-process was used to evaluate the validity of each draft recommendation statement. The Delphi method is a structured communication technique based on bringing together a group of experts in two or more rounds, facilitating the formation of a consensus and recommendations .In total three moderated face-to-face Delphi rounds were held and four additional conference calls were conducted by all 12 members of the expert panel to formulate and agree on each and every recommendation over a course of 18 months. All group members interacted during these face-to-face meetings and in addition by iterative e-mails between each other. All conclusions and recommendations were discussed in detail and step-by step until a full consensus was achieved for each statement. This modified Delphi process with a large proportion of moderated face-to-face communication was chosen, because (i) it builds trust and transparency between the parties communicating, (ii) it enhances productivity by giving attendants the opportunity to brainstorm over a task without the limitations and confines of time, (iii) it allows for immediate very detailed feedback questions and answers between all interprofessional experts and parents, resulting in productive, nuanced discussions and constructive conclusions, and (iv) results in more effective interpersonal fusion of horizons of various experiences of professionals and parents to find common ground national health care and development organizations –16,systematic reviews, position papers and recommendations , 17–53individual studies that were identified by reviewing the reference lists of the systematic reviews, position papers and recommendations, andtextbooks most frequently used in daily German clinical practice –62.The evidence was combined with expert opinion of the panel team members.The diagnosis of a life-limiting illness before or surrounding the birth process plunges unprepared parents and families into a life crisis . Yet, paWhen birth and death coincide, parents have little time to grow into their role as parents, get to know their child and give it a place within their family. Therefore, the child's care team should support, actively promote and protect the parent-child relationship .Parents who fear the bonding process to their dying newborn may be helped to realize that evading the pain of bereavement often only appears to make parting easier. Parents should be encouraged to commit emotionally to the child in order to allow them to take their first steps in dealing with the loss through a consciously designed parting. They need support and skills of staff in dealing with pain and avoidance reactions. Even if a prenatal diagnosis of a life-limiting disease has been made, it is important to create space for the bonding process . Indeed,Parents should be supported in getting to know their child and giving her a place within their family. A newborn baby has not yet a place in the family as a living infant , and famAll parental instincts and efforts to care for their child should be valued and actively encouraged . In thisThe relationship between family and care team is rooted in partnership and professionalism. The communication should be professional, ongoing, honest, empathetic, consistent, and transparent , 71, 72.Crisis talks and other encounters need a protected, appropriate setting , 73. TheProfessionals may at times be especially challenged by emotionally stressful discussions and react with a degree of uncertainty, hesitancy or even avoidance. That is why they require both individual and team skills, special abilities and attitudes, as well as continuous reflection, training and possibilities for debriefing and supervision .A continuous, open and honest exchange of information, values, goals and treatment options between the expectant mother or the parents and the care team is the foundation for sustainable decisions . The actThe diagnosis or the symptoms of a severe life-limiting illness entail complex challenges for treatment decisions and interventions . ParentsThe basic prerequisites for the decision-making process are open, understandable, empathetic communication and a comprehensive exchange of information with the parents , 82. TheIt is essential to include, in addition to the physician's perspective, the expertise of midwives, nurses, therapists  and specialists in psychosocial and spiritual care , 84. ThiOnce medically, ethically, and legally sound parental decisions have been made, they should be respected by all concerned, even if the care team would prefer a different treatment option. In very rare cases, if a viable common decision cannot be reached, the ethical principle of causing no harm can become the guiding principle for treatment.It is important and helpful to formulate a transparent therapeutic plan for each step and for all participants. Formal documentation of the process and decisions facilitates the interdisciplinary exchange of information and can prevent loss of information. It should always be considered that parents may re-evaluate previous decisions during the subsequent course of the treatment  . The carAdvance care planning, first developed as a new concept in the late 1990s , 88 for Outside of curability, situations will inevitably arise during the clinical course in which alternative therapeutic goals and treatment options may suggest individual courses of action . SupplemBasically, an advance care plan addresses the following stages in the course of the illness : 1) dis dis1) diOutside of supporting parents by preparing emergency and crisis situations, it is the goal to identify central wishes and concerns and pave the way for shared decisions for future interventions. It should be sought to document the summary of the advance care discussion in writing. The documentation should include specific details of the discussion process, the therapeutic goals and measures.Especially for an acute emergency situation, it is important to specify in detail whether life-sustaining measures should be initiated, and if so, which ones and to what extent. It is also helpful to include a “neonatal emergency care directive,” analogous to the US American “Physician order for life sustaining treatment (POLST”) form in the written document . This shFor palliative care at home it is particularly important that the treatment plan anticipates measures for symptom control for foreseeable crises. For example, medication required under certain circumstances should be provided and its administration ensured.Effective interfaces among interdisciplinary care team members and other disciplines are a prerequisite to ensure the sharing of information and implementation of the treatment plan . The cooNotwithstanding any ambivalence among parents and specialists , this stThe essence of palliative care for newborns with life-limiting illnesses is not upon life prolongation at any cost, but rather upon providing the best quality of life, emphasizing the well-being of the child and her family . In any The dying child should be carefully and systematically assessed for any evidence of pain and other signs of suffering such as shortness of breath, restlessness and anxiety. The parents' assessment of the child's condition should be taken into account. Appropriate pain management and symptom control  through The administration of drugs such as opiates and benzodiazepines with the primary aim of alleviating suffering and symptoms should proceed despite possible respiratory or circulatory depressing side effects . Here itIt should be noted that parents are the most important caregivers for the child. They should be supported in exercising their parental autonomy and caring . With thHuman closeness remains the highest priority while the newborn is dying. In virtually every case, the supportive presence of the parents should be made possible. If the parents cannot be reached or for personal reasons are not able to be present, the necessary closeness and human attention should be provided by another family member, friend or someone from the team. Especially during dying, every family's right to privacy should be taken into account. The parents can decide whether to remain alone with their child or rather prefer that a team member be present for support. Family members requested by the parents should be given expeditious access to the child, if not already present. This applies especially to siblings.Once the final stages of the dying process have begun, it is the team's primary task to stay in attendance without being intrusive. The goal is to enable the child to die in comfort and with dignity. Parents should be braced for understanding and anticipating possible symptoms, reflexes and behavior patterns of the dying child in order to avoid confusion and fear. Individual variability in the duration of the dying process should also be pointed out.Grief is the normal reaction to a significant loss. For affected parents, grief at the beginning of life often means having to say goodbye to their child before they have welcomed him into the world and into their family . The parAt the beginning of their bereavement journey, parents need a proactive, accessible contact. At all times, they are free to accept or reject individual offers of support. Offers of grief counseling should be periodically repeated, as the parents' mental state, needs and situation may often change with time. Grieving parents and their families need reliable and readily available contact persons . These sFears of deepening attachment to the dying or deceased child can be counterbalanced by positive narratives from other parents in the same situation. Hearing that grief is generally not worsened by repeated encounters can encourage parents to make use of the time while their child can still be experienced. However, parents maintain the choice at any time to not see their child.Personnel, staffing, environmental, and organizational practices should be designed to enable families to spend time with their child up until the burial. This also includes the opportunity to invite siblings and important family members to get to know the sick, dying or deceased child and thereby better understand whom it is that the parents grieve.From the moment of diagnosis, parents live through an exceptional situation. As a result, it may be necessary during grief counseling to raise topics that the parents themselves will seldom initiate. This includes aspects such as: inclusion of siblings and addressing their grief, individual differences in expressing grief and coping with the potential for conflict in the relationship , ambivalIn order to ensure that outpatient grief counseling may continue, it is necessary to identify potential resources  with the parents, allowing them access to a support network , 26. In When birth and death occur so closely together, it creates an existential crisis. Life plans are destroyed. Assumptions about life, its meaning, its values and its spiritual-religious grounding are suddenly called into question . It is tPeople enquire into the mystery of life and seek its meaning. This is a characteristic trait of human existence, which we call spirituality. Pastoral care is attentive to the spiritual and religious needs of parents. Many in these situations hold onto their faith as a source of strength, its encouragement through pastoral care offering an additional resource for coping. If one's own faith is not (or is no longer) perceived as supportive and comforting, however, parents may consider pastoral care as an additional burden. The question of guilt, even if it is not expressed outright, can nevertheless be an important issue, and one to which the care team and especially the pastoral care giver should be attuned. In their approach and manner the pastoral care workers convey to their clients that they stand by them and they are searching for answers together. They are sensitive to the spiritual and religious needs of their clients, and do not offer ready-made answers. Their spirituality is recognizable and truthful; they wish never to promote their own ideas, much less to impose them.It is necessary to distinguish between the broader spiritual-pastoral and the narrower religious-pastoral services. Baptism, blessing, prayer, as well as greeting and farewell rituals place the child in his uniqueness at the center of the parents and care team, regardless of his state of health. At the same time, they remind us of the lack of control over life despite all the technological possibilities. Rituals are an expression of love and appreciation. They open up another dimension of familial experience in the midst of all the medical treatments. They demonstrate appreciation for the child, connect him to the community and thereby give him a permanent place there, even if he dies . RitualsPastoral workers can additionally play a helpful role for the care team in coping with their own work stress, and with their own spiritual and religious questions and needs. In these cases, talking, as well as rituals may provide relief and support.Palliative care of newborns, as well as counseling and grief support for affected parents begins with the diagnosis, which is sometimes already established prenatally. For this reason, an interdisciplinary, cross-sectoral network is needed from the outset, consisting of outpatient and inpatient care providers . FamiliePerinatal-palliative care is particularly challenging both personally and existentially. It therefore requires appreciative respect and special support. Optimal support for the patients and relatives will only be possible if the resources of the team members are effectively strengthened and their resilience is fostered . In ordeHigh quality palliative care and grief counseling also require professional objectivity in order to assess the needs of the child and family and to be able to take appropriate action. Palliative support personnel should establish sufficient closeness to allow trust, but nevertheless maintain adequate perspective and a sense of boundary in order to recognize their own limitations.The team members should be involved in the development and planning of therapeutic options. A shared understanding of the different points of view lessens the moral distress. This equally suggests that every team member has the right to initiate a discussion about therapeutic goals.Regularly held discussion forums within the institution help give every team member the opportunity to address events that have occurred in a constructive, respectful and empathetic manner. Within the team, attention should be given to monitor if each member remains able to cope with the strain of caring for dying and dead children, as well as for their families. Whenever this tolerance is exceeded, the responsibility should be assumed by another team member.Rituals and developing a culture of farewell, professional and personal interaction, as well as continued education and supervision contribute to professional self-care . Each tePeri- and neonatal palliative care and supportive grief counseling is complex and differs in some ethical, medical, and psychosocial aspects from pediatric palliative care. Similar to pediatric palliative care it requires a specialized multidisciplinary approach to meet physical, psychosocial, and spiritual needs of a child and his family. In the last decade, standards, guidelines and quality improvement strategies have been developed for pediatric palliative care. This has been a major contribution to the integration of palliative care into daily practice and has improved its quality. In contrast, palliative care and grief counseling in peri- and neonatology have made a much slower progress. Local initiatives have tried to give guidance in neonatal palliative care, but standardization of care is lacking. By using an expert panel involving health care professionals of different backgrounds and bereaved parents, we provided a broad participatory approach on a national level. The recommendations presented here are based on the combination of the evidence available and a national expert consensus.Despite the fact, that the evidence level of most of our recommendations is low due to the lack of rigorous evidence, these first results have an important role in guiding health care providers to the optimal clinical care of affected children and families.However, we do also acknowledge the limitation of the methods of evidence-based medicine in our field, where values of individual families, a central “goals of care”-approach and ethical reasoning are paramount to decision-making and practice. Although within a society as well as between societies value systems differ, with no existing “objective” common agreement on e.g., what quality of life is or dignity, respectively, person-centered care and trust to define the best interest of the severely ill child primarily by families, based on deep respect for parental autonomy, suffering and life goals as the basis for decision making, are widely shared around the world. The description of core concepts of excellent value-based medicine including palliative care, entailed in the current.German recommendations add specific details of the PaluTiN expert consensus to the international debate aiming to improve the care for children diagnosed in the pre- or postnatal period with life-threatening conditions and for their families.Finally and self-evident these recommendations do not claim to be able to answer all questions. They should rather serve as an orientation, encouraging discussion, and continuous development. Further recommendation updates are required to improve the quality of palliative care and grief counseling in peri- and neonatology.https://www.fruehgeborene.de/fuer-fachleute/palliativversorgung-und-trauerbegleitung.Full text version  of recommendations is available on: LG, MG, KH, KJ, KK, TK, TN, FO, MS, US, BS, and TS contributed to the working group and/or to the discussions of the findings of the working group and all offered amendments to the previous drafts and/or agreed the manuscript.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.


Evidence suggests that there is a negative image of nursing and midwifery that does not promote these professions as attractive career options. Furthermore, there is a paucity of studies documenting how nursing and midwifery is perceived in East Africa and where such studies exist they are country-specific. The aim of this study was to explore views regarding the image of nursing and midwifery among nurses and midwives in three East African countries, Kenya, Tanzania and Uganda.An exploratory descriptive cross-sectional study administered online using Survey Monkey Questionnaires assessed the views and perceptions of nurses and midwives regarding the image of nursing and midwifery professions. Descriptive statistics and Pearson’s Chi square tests were used to analyse the data. The semi-structured questions were analysed using content analysis.A total of 551 participants took part in the study. The majority were females (61.8%), registered nurses/midwives (45.8%), and aged 30–39 years (34.2%). Most of the respondents were from Kenya (39.7%) and Uganda (32.9%). About two-thirds of the nurses and midwives in this study perceived nursing/midwifery as both trusted and respected professions and expressed having a level of control over how their image was portrayed. Conversely, the nurses and midwives were conscious that the public had mixed responses about the nursing/midwifery professions specifically, some members of the public described nurses/midwives as professionals, knowledgeable and caring, others perceived nurses/midwives to be rude, cruel, unkind, lazy, unkempt, and maids.This study offers an interesting insight about the image of nursing/midwifery in East Africa. Findings from this study will inform policy makers and educators about key concepts that affect the image of nursing and midwifery in East Africa. The findings will be used to design marketing materials to help improve the image of nursing and midwifery in the region and other African countries.The online version contains supplementary material available at 10.1186/s12912-020-00531-w. Globally, the image of nursing and midwifery has been an issue of concern with negative impact for the two professions. Several factors have been associated with the image of nursing and midwifery professions and how it affects patients’ care. Regrettably, factors such as nurse to nurse bullying, hostile clinicians and disruptive behaviour have been found to adversely impact on patient care and reduced work performance . The wayConsistently, the nursing profession has not been adequately represented in the media. A literature review undertaken three decades ago presented four main images of nurses as portrayed by the media, which include the ministering angel, the battleaxe, the naughty nurse and the doctor’s handmaiden . In SwedA study conducted in the Middle East to explore public perceptions of the role of the midwife found that women did not know that such a role existed, despite having received antenatal care at a midwifery led clinic. When questioned about their visibility, the midwives responded that the women referred to them as ‘doctora’ (the physician) and none of the midwives corrected this . In someIn most high-income countries, the public understands and appreciates the role of nurses and midwives. In addition, nurses and midwives consistently top public surveys about professionals that are trusted, yet there is a shortage of suitable applicants for both professions , 13. HowIn low- and middle-income countries, the shortage of nurses and midwives is marked  and therIn East Africa, the shortage of nurses compared to international averages is clear. According to the World Health Organization , East AfIn order to explore contributors to the shortage of nurses and midwives, the views of nurses, midwives, medical doctors and other health care professions were sought to elicit perceptions of the role and image of nursing and midwifery in three East African countries, Kenya, Tanzania and Uganda. However, due to limited numbers, data from medical doctors and other health care professions were excluded in the analysis, and therefore this paper present results from nurses and midwives only.The majority of existing studies reviewed about image of nursing and midwifery were conducted in the context of high income countries in Europe and North America. Although these studies have established that members of their populations held higher regard for nurses than other professionals  other coIn addition, there is a paucity of studies documenting how nursing is perceived in East Africa. Therefore, it is of interest to investigate the nurses and midwives’ perception regarding the image of nursing and midwifery in the East African context. This study is of ultimate importance to better understanding and improving the image of nursing and midwifery within East Africa. It attempts to fill a knowledge gap arising from lack of similar research on the topic within the region. In addition, it aims to generate scientific evidence for supporting nursing and midwifery associations to positively promote nursing and midwifery and address negative perceptions of the profession.To determine views of nurses and midwives regarding the image of nursing and midwifery across East AfricaIdentify strategies for promoting a positive image of nursing and midwifery in East AfricaThis was an exploratory cross-sectional descriptive study with use of online quantitative survey tools consisting of structured, semi-structured questions and Likert scales. A questionnaire was designed to assess the view and perceptions of nurses and midwives regarding the image of nursing and midwifery professions.This study was conducted across three East African countries namely Kenya, Tanzania, and Uganda.All registered nurses and midwives who are members of nursing and midwifery professional associations or regulatory councils in the study settings.I.Nurses and midwives in active practice within East African health care sector.II.Working in East Africa public or private sector.III.Belonging to or being a member professional association or regulatory council within the country.Respondents were recruited into the study if they meet the following criteria:I.Expatriate nurses and midwives working within the three East African countries.Data was collected using a questionnaire developed for this study  = (Nxn)/(N+n) Of note, due to the limited number of responses from the doctors, the data from the doctors were excluded in the analysis.The research team worked with the leadership of the professional associations to randomly selected participants from the list of members using MS Excel. The selected participants were then invited via email by the Secretaries of the professional associations containing information on the study, consent form and a personalized link to the tool. Table All data were kept confidential and stored securely in accordance to research ethics governing human participants. No identifying information was stored, and only basic demographic data was collected. Data was stored within AKU secured electronic folders and only accessible by the investigators of the study.Data was checked for completeness and consistency and then entered into SPSS version 24 for analysis. Descriptive statistics was used to describe; sample characteristics, professional views of the nurses, impact of nurses on others, and belief of how others perceive their profession. However, owing to limited data, information provided by doctors and other professionals were excluded from the analysis. There were questions with incomplete responses that were missing at random. Missing data due to non-response from the study participants was managed using listwise deletion , 28. Howp-value of less than 0.05 considered statistically significant. In addition, the semi-structured questions in our questionnaire , aged 30–39 years  and registered nurses/midwives , followed by registered community health nurses , and enrolled nurse/midwife . A majority of the respondents were from Kenya  and Uganda . Among the respondents from Kenya, the mean age was 38.5 years (SD: 9.4 years) and average years of practice was 14.4 (9.7) years.A total of 551 participants took part in the study Table , howeverIn Table As shown in Table Moreover, as highlighted in Table Generally, nurses in the three study areas  felt strongly that they were respected and valued 61.7%). More than half (58.2%) of the nurses in Uganda strongly disagreed that medical doctors have a high regard for them as nurses , require a multi-stakeholder approach to address the factors responsible for the negative perceptions of nurses/midwives by the public and healthcare workers. These approaches should include long-term innovative strategies that include the use of social media platforms and increased public engagement to promote nursing and midwifery. Remarkably, over one-third of our participants were males- indicating that nursing and midwifery are embraced as career options by the male gender in the East African region. These figures are promising particularly because nursing as a profession suffers from public stereotyping and historically perceived to be a female-dominated profession .In spite the strengths of our study, a few limitations exist. This initial study used a quantitative approach hence in depth exploration of some the findings was not possible. Further, while the initial intent was to examine the image of the nurse from the perception of nurses, midwives and doctors, the response rate from the doctors was very low making it difficult to do any meaningful statistical analysis. Thus, there were incomplete results in the findings. Although we acknowledge that triangulating data collection methods and sources of data is beneficial, this may come in a regional follow up study that will include doctors and other health workers that work directly with nurses and midwives. Another limitation is that the public’s perception was explored through the viewpoint of nurses and midwives and not directly from the public. Much as this could be a limitation, it highlights that the nurses and midwives in the three countries are acutely aware of how they and their profession are perceived in the public. In addition, there was incomplete responses to some questions and we decided to analyze the data as is but we are confident that the missing data in this study did not undermine the findings.In view of our findings, we propose some recommendations. First, we recommend that the Nursing and Midwifery Councils and Associations of Kenya, Tanzania and Uganda employ strategies such as on-going context-specific continuing professional development trainings (CPDs) geared towards enhancing nurse and midwife self-image. Second, the Councils and Associations need to develop and improve existing guidelines on ‘how nurses and midwives’ interact with patients. Third, there is need for a detailed examination of public’s perception of nurses and midwives in the three countries and the East Africa region.In conclusion, our study offers an interesting insight about the image of nursing/midwifery in East Africa and we recognize that more work needs to be done in the region to promote this noble profession. Findings from this study will inform policy makers and educators about key concepts that affect the image of nursing and midwifery in East Africa. The findings will be used to inform further research and design marketing materials to help improve the image of nursing and midwifery in the region and other African countries.Additional file 1. Study questionnaire.