Exploring fathers' experiences of caring for a child with complex care needs through ethnography and arts-based methodologies.

BACKGROUND: Although the number of children living with complex care needs (CCN) is increasing worldwide, there is limited data on the experience of fathers caring for children with CCN. This paper reports on findings specific to fathers' experiences of caring for their child with CCN and highlights recommendations provided for parents of children with CCN, service providers, and policymakers. The findings emerged from a larger study designed to examine how Canadian families of children with CCN participate in society. METHODS: We used the qualitative research approach of ethnography and arts-based methodologies (ecomaps and photovoice) as well as purposive and snowball sampling techniques. Four parents were engaged as advisors and twenty-nine fathers participated in interviews (all were married or in a relationship; age range of 28 to 55 years). In line with an ethnographic approach, data analysis involved several iterative steps including comparing data from the first, second, and third set of interviews and refining themes. RESULTS: One overarching theme, striving to be there for the child with CCN, was identified. Five supporting themes further exemplified how fathers strived to be there for their child: 1) contributing to the parental team through various roles; 2) building accessibility through adaptation; 3) engaging in activities with the child; 4) expressing admiration and pride in their children; and 5) meaning making. Recommendations for parents included making and nurturing connections and asking for help while recommendations for healthcare and social service providers included communicating authentically with families and listening to parents. Fathers also indicated that leadership and funding for programs of families of children with CCN should be priorities for policymakers. CONCLUSIONS: In addition to documenting fathers' active involvement in their child's care and development, our findings provide new insights into how fathers make participation in everyday life accessible and inclusive for their children. Study findings also point to 1) priority areas for policymakers (e.g., accessible physical environments); 2) factors that are critical for fostering collaborative care teams with fathers; and 3) the need for complex care teams in the adult health care system. Implications for those providing psychosocial support for these families are noted as well as knowledge gaps worthy of future exploration such as the role of diversity or intersectionality in fathering children with CCN.

Measuring patients' experiences of continuity of care in a primary care context-Development and evaluation of a patient-reported experience measure.

BACKGROUND: Continuity of care is viewed as a hallmark of high-quality care in the primary care context. Measures to evaluate the quality of provider performance are scarce, and it is unclear how the assessments correlate with patients' experiences of care as coherent and interconnected over time, consistent with their preferences and care needs. AIM: To develop and evaluate a patient-reported experience measure of continuity of care in primary care for patients with complex care needs. METHOD: The study was conducted in two stages: (1) development of the instrument based on theory and empirical studies and reviewed for content validity (16 patients with complex care needs and 8 experts) and (2) psychometric evaluation regarding factor structure, test-retest reliability, internal consistency reliability, and convergent validity. In all, 324 patients participated in the psychometric evaluation. RESULTS: The Patient Experienced Continuity of care Questionnaire (PECQ) contains 20 items clustered in four dimensions of continuity of care measuring Information (four items), Relation (six items), Management (five items), and Knowledge (five items). Overall, the hypothesized factor structure was indicated. The PECQ also showed satisfactory convergent validity, internal consistency, and stability. CONCLUSION/IMPLICATIONS: The PECQ is a multidimensional patient experience instrument that can provide information on various dimensions useful for driving quality improvement strategies in the primary care context for patients with complex care needs. PATIENT OR PUBLIC CONTRIBUTION: Patients have participated in the content validation of the items.

Entangled in complexity: An ethnographic study of organizational adaptability and safe care transitions for patients with complex care needs.

AIM: The aim of this study was to visualize vulnerabilities and explore the dynamics of inter-professional collaboration and organizational adaptability in the context of care transitions for patients with complex care needs. DESIGN: An ethnographic design using multiple convergent data collection techniques. METHODS: Data collection involved document review, participant observations and interviews with healthcare and social care professionals (HSCPs). Narrative analysis was employed to construct two illustrative patient scenarios, which were then examined using the Functional Resonance Analysis Method (FRAM). Thematic analysis was subsequently applied to synthesize the findings. RESULTS: Inconsistencies in timing and precision during care transitions pose risks for patients with complex care needs as they force healthcare systems to prioritize structural constraints over individualized care, especially during unforeseen events outside regular hours. Such systemic inflexibility can compromise patient safety, increase the workload for HSCPs and strain resources. Organizational adaptability is crucial to managing the inherent variability of patient needs. Our proposed 'safe care transition pathway' addresses these issues, providing proactive strategies such as sharing knowledge and increasing patient participation, and strengthening the capacity of professionals to meet dynamic care needs, promoting safer care transitions. CONCLUSION: To promote patient safety in care transitions, strategies must go beyond inter-professional collaboration, incorporating adaptability and flexible resource planning. The implementation of standardized safe care transition pathways, coupled with the active participation of patients and families, is crucial. These measures aim to create a resilient, person-centred approach that may effectively manage the complexities in care transitions. IMPLICATIONS: The recommendations of this study span the spectrum from policy-level changes aimed at strategic resource allocation and fostering inter-professional collaboration to practical measures like effective communication, information technology integration, patient participation and family involvement. Together, the recommendations offer a holistic approach to enhance care transitions and, ultimately, patient outcomes. REPORTING METHOD: Findings are reported per the Consolidated Criteria for Reporting Qualitative research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

An examination of characteristics, social supports, caregiver resilience and hospital readmissions of children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) account for 1% of children in the United States. These children experience frequent hospital readmissions, high healthcare costs and poor health outcomes. A link between CMC caregiver social support, resilience and hospital readmissions has never been fully investigated. This study examines the feasibility of a prospective, descriptive, repeated measures research design to characterize CMC and their caregivers, social supports, caregiver resilience and hospital readmissions to inform a larger prospective investigation. METHODS: Caregivers of CMC with unplanned hospitalizations completed surveys at the index hospitalization and 30 and 60 days after discharge. CMC caregiver and child characteristics, social supports and hospital readmissions were examined using an investigator-developed survey. Resilience was measured using the Resilience Scale-14© (7-Point Likert Scale, score range 14-98), and feasibility was measured by calculating enrolment, attrition, survey completion and item response. Analysis included descriptive statistics and qualitative data visualization. RESULTS: Of caregivers who were approached for participation, 81.1% consented  and completed 76 surveys. Attrition was 31%. Item response rates were ≥ 90% for all but one item. A total of 62.1% of children had hospital readmissions within 90 days and 37.9% within 30 days. Additionally, 70% of caregivers had home care nursing, but the approved hours were only partially filled. More than 70% of caregiver resilience scores were moderate to high (score range 74-98) and were stable across repeated measures and hospital readmissions. Open-ended question responses revealed the following five categories: All-consuming, Family Reliance, Impact of Covid, Taking Action and Broken System. CONCLUSIONS: Studying CMC caregiver social supports and resilience using repeated measures is feasible. CMC caregivers reported stressors including coordinating their child's substantial healthcare needs and managing partially filled home care nursing hours. Caregiver resilience remained stable over time, amidst frequent CMC hospital readmissions. Findings can inform future research priorities and power analyses for CMC caregiver resilience.

Usability And Feasibility of an in-Home Remote Exam Device in Children with Medical Complexity During the COVID-19 Pandemic.

Background: Children with medical complexity (CMC) account for high health care utilization. Telemedicine holds significant potential in CMC, as it allows a provider to engage with CMC in their home environment and can alleviate both financial and transportation burdens. Remote exam devices that enable the performance of a physical exam could expand the ability of providers to clinically assess CMC during a telemedicine visit. In this pilot study, our goal was to develop a process for integrating an in-home remote exam device into a complex care clinic during the COVID-19 pandemic and evaluate the usability and feasibility of this device. Methods: The remote exam device was distributed to caregivers of CMC cared for at a complex care outpatient center. Using deliberate practice framework, our onboarding process provided opportunities for caregivers and providers to learn how to utilize the device. Surveys examining usability and feasibility were administered to both caregivers and providers after each telemedicine encounter. Results: A total of 43 caregivers participated in the onboarding process, which included a total of 83 practice visits. The remote exam device was rated as having excellent usability by caregivers; however, providers rated the device as having lower usability. Feasibility was notable for technology issues contributing to 15% of encounters being cancelled or ending early. Conclusions: The remote exam device was successfully integrated into a complex care clinic. Data from this pilot study supports the usability and feasibility of deploying a remote exam device across a telemedicine platform in a busy and complex outpatient academic practice.

Finding meaning in complex care nursing in a hospital setting.

This study explores the experiences of nurses that provide 'complex', generalist healthcare in hospital settings. Complex care is described as care for patients experiencing acute issues additional to multimorbidity, ageing or psychosocial complexity. Nurses are the largest professional group of frontline healthcare workers and patients experiencing chronic conditions are overrepresented in acute care settings. Research exploring nurses' experiences of hospital-based complex care is limited, however. This study aims to add to what is known currently. Four 'complex care' nurses undertook in-depth semistructured interviews and their narratives were analysed using the conceptual framework of complex adaptive phenomenology. Two overarching themes constituting the 'essence' of complex care nursing were identified: Contextual factors and attribute/value-based elements. Creating meaningful patient outcomes and feeling part of a team were experienced as fulfilling, whereas time constraints, institutional settings and systemic barriers to comprehensive caregiving diminished the experience of providing complex care. Overall, work meaning presented as a dynamic phenomenon, shaped by personal and professional values, local settings and systemic factors. It is recommended that more expansive research be undertaken to explore the experience of complex care for nurses. Such knowledge can contribute to initiatives that draw a skilled, effective and engaged hospital-based complex care nursing workforce.

The meaning of continuity of care from the perspective of older people with complex care needs-A scoping review.

People aged 65 years or older with complex care needs are at risk of fragmented care. This may jeopardise patient safety. Complex care needs are defined as care needs that require the performance of time-consuming processes such as reviewing medical history, providing counselling, and prescribing medications. A scoping review was conducted with the aim of mapping the literature regarding continuity of care from the perspective of older people with complex care needs. Search results from seven databases (PubMed, Cinahl, PsycInfo, ASSIA, Web of Science, Google Scholar, Scopus, DOAJ), grey literature (BASE), and a hand-search search of key journals were used. A deductive analysis based on aspects of continuity of care was performed. The search resulted in 5704 records. After a title and abstract screening, 93 records remained. In total, 18 articles met the inclusion criteria and were included in the scoping review. Older people´s sense of continuity of care increases when fewer healthcare workers are involved in their care but help from skilled professionals is more important than meeting the same person. It is vital for older people's feeling of continuity of care that discharge planning involves them, their families, and care providers in an organised way.

Cliff or bridge: breaking up with the paediatric healthcare system.

Transition from paediatric to adult healthcare is a normal part of the care trajectory, yet the process often leaves much to be desired. In this commentary, I share my family's journey of this care transition, particularly the handover aspect, by providing examples of different ways that relationships were ended by paediatric healthcare professionals. The ending of these relationships often felt like 'breaking up'. I also share an example of a supported handover, which bridged the transition from paediatric to adult care. To improve transitions, we need genuine acknowledgement of the paediatric medical trauma stress (PMTS) experienced by families such as mine following years of interactions in the healthcare system. Along with following transition checklists, patients and families need authentic and meaningful closure to longitudinal relationships and trauma-informed care practices as we move forward into the adult care system.

Implementation of Low-Barrier Human Immunodeficiency Virus Care: Lessons Learned From the Max Clinic in Seattle.

Low-barrier care (LBC) for people with human immunodeficiency virus (HIV) is a differentiated service delivery strategy to engage people in HIV treatment who are not well-engaged in conventionally organized HIV medical care. The LBC approach is flexible, but experience suggests that the intervention has distinct core components. This review summarizes our experience implementing one model of LBC, the Max Clinic in Seattle; describes the core components of the intervention; and presents a framework for implementing low-barrier HIV care with the goal of providing a practical guide for clinical and public health leaders seeking to implement a new LBC program. A systematic approach to addressing key factors during LBC implementation can support practitioners to design an LBC approach that fits the local context while maintaining essential elements of the intervention.

Integrated care for children living with complex care needs: an evolutionary concept analysis.

Children with complex care needs (CCNs) are in need of improved access to healthcare services, communication, and support from healthcare professionals to ensure high-quality care is delivered to meet their needs. Integrated care is viewed as a key component of care delivery for children with CCNs, as it promotes the integration of healthcare systems to provide family and child-centred care across the entire health spectrum. There are many definitions and frameworks that support integrated care, but there is a lack of conceptual clarity around the term. Furthermore, it is often unclear how integrated care can be delivered to children with CCNs, therefore reinforcing the need for further clarification on how to define integrated care. An evolutionary concept analysis was conducted to clarify how integrated care for children with CCNs is defined within current literature. We found that integrated care for children with CCNs refers to highly specialised individualised care within or across services, that is co-produced by interdisciplinary teams, families, and children, supported by digital health technologies.  Conclusion: Given the variation in terms of study design, outcomes, and patient populations this paper highlights the need for further research into methods to measure integrated care. What is Known: • Children with complex care needs require long-term care, and are in need of improved services, communication, and information from healthcare professionals to provide them with the ongoing support they need to manage their condition. • Integrated care is a key component in healthcare delivery for children with complex care needs as it has the potential to improve access to family-centred care across the entire health spectrum. What is New: • Integrated care for children with CCNs refers to highly specialised individualised care within or across services, that is co-produced by interdisciplinary teams, families, and children, supported by digital health technologies. • There is a need for the development of measurement tools to effectively assess integrated care within practice.

Targeted care navigation to reduce hospital readmissions in 'at-risk' patients.

BACKGROUND: Care navigation is commonly used to reduce preventable hospitalisation. The use of Electronic Health Record-derived algorithms may enable better targeting of this intervention for greater impact. AIMS: To evaluate if community-based Targeted Care Navigation, supported by an Electronic Health Record-derived readmission risk algorithm, is associated with reduced rehospitalisation. METHODS: A propensity score matching cohort (5 comparison to 1 intervention cohort ratio) study was conducted in an 850-bed Victorian public metropolitan health service, Australia, from May to November 2017. Admitted acute care patients with a non-surgical condition, identified as at-risk of hospital readmission using an Electronic Health Record-derived readmission risk algorithm provide by the state health department, were eligible. Targeted Care Navigation involved telephone follow-up support provided for 30 days post-discharge by a registered nurse. The hazard ratio for hospital readmission was calculated at 30, 60 and 90 days post-discharge using multivariable Cox Proportional Hazards regression. RESULTS: Sixty-five recipients received care navigation and were matched to 262 people who did not receive care navigation. Excellent matching was achieved with standardised differences between groups being <0.1 for all 11 variables included in the propensity score, including the readmission risk score. The Targeted Care Navigation group had a significantly reduced hazard of readmission at 30 days (hazard ratio 0.34; 95% confidence interval: 0.12, 0.94) compared with the comparison group. The effect size was reduced at 60 and 90 days post-discharge. CONCLUSION: We provide preliminary evidence that Targeted Care Navigation supported by an Electronic Health Record-derived readmission risk algorithm may reduce 30-day hospital readmissions.

Gaps in transitional care to adulthood for patients with cerebral palsy: a systematic review.

PURPOSE: The transition from pediatric to adult care can be complex and difficult to navigate for adolescents with cerebral palsy (CP). We aimed to assess the current state of transitional care for young persons with CP and delineate guidelines for best practice with opportunities for intervention. METHODS: A systematic review was conducted using PRISMA guidelines to search PubMed, Embase, and Scopus databases. Articles were screened for relevance via title and abstract prior to full-text review. RESULTS: Of 3151 resultant articles, 27 observational studies were included. Fourteen (52%) studies assessed clinical outcomes of patients with CP during and post-transition. Transition-associated poor outcomes included housing instability, unemployment, difficulty forming relationships, increased hospital admission rates, and decreased use of rehabilitation services. Factors associated with improved outcomes included family participation, promotion of self-efficacy, and meeting the adult team before transition. Nine (33%) studies conducted interviews with transition-age persons with CP. Key themes were a lack of transition preparedness, difficulty navigating the adult system, gaps in seamless care, and limited accessibility to specialists and environments suitable for patients with complex care needs. Four (15%) studies examined features of current transition services. Perceived barriers included poor communication within health service teams, limited adult providers accepting CP patients, and the lack of financial resources for specialized care. There was no standardized transition tool or approach. CONCLUSION: These findings underscore the importance of a planned transition process in optimizing long-term medical and psychosocial outcomes for persons with CP. Further research, including translational, team-based, and community-engaged research, are needed.

What is best for Esther? A simple question that moves mindsets and improves care.

BACKGROUND: Persons in need of services from different care providers in the health and welfare system often struggle when navigating between them. Connecting and coordinating different health and welfare providers is a common challenge for all involved. This study presents a long-term regional empirical example from Sweden-ESTHER, which has lasted for more than two decades-to show how some of those challenges could be met. The purpose of the study was to increase the understanding of how several care providers together could succeed in improving care by transforming a concept into daily practice, thus contributing with practical implications for other health and welfare contexts. METHODS: The study is a retrospective longitudinal case study with a qualitative mixed-methods approach. Individual interviews and focus groups were performed with staff members and persons in need of care, and document analyses were conducted. The data covers experiences from 1995 to 2020, analyzed using an open inductive thematic analysis. RESULTS: This study shows how co-production and person-centeredness could improve care for persons with multiple care needs involving more than one care provider through a well-established Quality Improvement strategy. Perseverance from a project to a mindset was shaped by promoting systems thinking in daily work and embracing the psychology of change during multidisciplinary, boundary-spanning improvement dialogues. Important areas were Incentives, Work in practice, and Integration, expressed through trust in frontline staff, simple rules, and continuous support from senior managers. A continuous learning approach including the development of local improvement coaches and co-production of care consolidated the integration in daily work. CONCLUSIONS: The development was facilitated by a simple question: "What is best for Esther?" This question unified people, flattened the hierarchy, and reminded all care providers why they needed to improve together. Continuously focusing on and co-producing with the person in need of care strengthened the concept. Important was engaging the people who know the most-frontline staff and persons in need of care-in combination with permissive leadership and embracing quality improvement dimensions. Those insights can be useful in other health and welfare settings wanting to improve care involving several care providers.

Implementation analysis of a case management intervention for people with complex care needs in primary care: a multiple case study across Canada.

BACKGROUND: Case management is one of the most frequently performed interventions to mitigate the negative effects of high healthcare use on patients, primary care providers and the healthcare system. Reviews have addressed factors influencing case management interventions (CMI) implementation and reported common themes related to the case manager role and activities, collaboration with other primary care providers, CMI training and relationships with the patients. However, the heterogeneity of the settings in which CMI have been implemented may impair the transferability of the findings. Moreover, the underlying factors influencing the first steps of CMI implementation need to be further assessed. This study aimed to evaluate facilitators and barriers of the first implementation steps of a CMI by primary care nurses for people with complex care needs who frequently use healthcare services. METHODS: A qualitative multiple case study was conducted including six primary care clinics across four provinces in Canada. In-depth interviews and focus groups with nurse case managers, health services managers, and other primary care providers were conducted. Field notes also formed part of the data. A mixed thematic analysis, deductive and inductive, was carried out. RESULTS: Leadership of the primary care providers and managers facilitated the first steps of the of CMI implementation, as did the experience and skills of the nurse case managers and capacity development within the teams. The time required to establish CMI was a barrier at the beginning of the CMI implementation. Most nurse case managers expressed apprehension about developing an "individualized services plan" with multiple health professionals and the patient. Clinic team meetings and a nurse case managers community of practice created opportunities to address primary care providers' concerns. Participants generally perceived the CMI as a comprehensive, adaptable, and organized approach to care, providing more resources and support for patients and better coordination in primary care. CONCLUSION: Results of this study will be useful for decision makers, care providers, patients and researchers who are considering the implementation of CMI in primary care. Providing knowledge about first steps of CMI implementation will also help inform policies and best practices.

Technology solutionism in paediatric intensive care: clinicians' perspectives of bioethical considerations.

BACKGROUND: The use of long-term life-sustaining technology for children improves survival rates in paediatric intensive care units (PICUs), but it may also increase long-term morbidity. One example of this is children who are dependent on invasive long-term ventilation. Clinicians caring for these children navigate an increasing array of ethical complexities. This study looks at the meaning clinicians give to the bioethical considerations associated with the availability of increasingly sophisticated technology. METHODS: A hermeneutic phenomenological exploration of the experiences of clinicians in deciding whether to initiate invasive long-term ventilation in children took place, via unstructured interviews. Data were analysed to gain insight into the lived experiences of clinicians. Participants were from PICUs, or closely allied to the care of children in PICUs, in four countries. RESULTS: Three themes developed from the data that portray the experiences of the clinicians: forming and managing relationships with parents and other clinicians considering, or using, life sustaining technology; the responsibility for moral and professional integrity in the use of technology; and keeping up with technological developments, and the resulting ethical and moral considerations. DISCUSSION: There are many benefits of the availability of long-term life-sustaining technology for a child, however, clinicians must also consider increasingly complex ethical dilemmas. Bioethical norms are adapting to aid clinicians, but challenges remain. CONCLUSION: During a time of technological solutionism, more needs to be understood about the influences on the initiation of invasive long-term ventilation for a child. Further research to better understand how clinicians, and bioethics services, support care delivery may positively impact this arena of health care.

Information and Communications Technologies Enabling Integrated Primary Care for Patients With Complex Care Needs: Scoping Review.

BACKGROUND: Information and communications technologies (ICTs) are recognized as critical enablers of integrated primary care to support patients with multiple chronic conditions. Although ICT-enabled integrated primary care holds promise in supporting patients with complex care needs through team-based and continued care, critical implementation factors regarding what ICTs are available and how they enable this model are yet to be mapped in the literature. OBJECTIVE: This scoping review addressed the current knowledge gap by answering the following research question: What ICTs are used in delivering integrated primary care to patients with complex care needs? METHODS: The Arksey and O'Malley method enhanced by the work by Levac et al was used to guide this scoping review. In total, 4 electronic medical databases were accessed-MEDLINE, Embase, CINAHL, and PsycINFO-collecting studies published between January 2000 and December 2021. Identified peer-reviewed articles were screened. Relevant studies were charted, collated, and analyzed using the Rainbow Model of Integrated Care and the eHealth Enhanced Chronic Care Model. RESULTS: A total of 52,216 articles were identified, of which 31 (0.06%) met the review's eligibility criteria. In the current literature, ICTs are used to serve the following functions in the integrated primary care setting: information sharing, self-management support, clinical decision-making, and remote service delivery. Integration efforts are supported by ICTs by promoting teamwork and coordinating clinical services across teams and organizations. Patient, provider, organizational, and technological implementation factors are considered important for ICT-based interventions in the integrated primary care setting. CONCLUSIONS: ICTs play a critical role in enabling clinical and professional integration in the primary care setting to meet the health system-related needs of patients with complex care needs. Future research is needed to explore how to integrate technologies at an organizational and system level to create a health system that is well prepared to optimize technologies to support patients with complex care needs.

Balancing on life's ladder: A meta-ethnography of the existential experiences of siblings of children with complex care needs.

AIM: To synthesize and interpret existing qualitative research on the existential experiences of siblings of children with complex care needs. DESIGN: Noblit and Hare's interpretive meta-ethnography. METHODS: The study has been registered in the international prospective register for systematic reviews (PROSPERO). Noblit and Hare's 7-step procedure was followed and reciprocal translation was performed to analyse the data and develop a line of argument synthesis. DATA SOURCES: A comprehensive systematic literature search of five databases, along with extensive manual searches, was completed in November 2022. The final sample comprised 18 studies published between 2010 and 2022. RESULTS: A line of argument, expressed through an overarching metaphor, "balancing on life's ladder", illustrates the core findings of siblings' fluctuating experiences of existential well-being, and encapsulates four third-order themes: the emotional turmoil of siblings, interrupted family life, siblings strive to be themselves and siblings struggle to cope. CONCLUSION: Growing up with a sibling with complex care needs made children feel invisible, lonely and struggling to find the courage to cope. By adopting a lifeworld approach, nurses can become aware of healthy siblings' unmet needs. Future research is needed on how nurses can contribute to siblings' existential well-being, in primary - and secondary health care settings. IMPLICATIONS: The study provides insight into siblings' existential experiences and factors improving their well-being, enabling nurses to provide a more optimized lifeworld-led clinical practice. IMPACT: Healthcare, nursing education and practice should be informed by the knowledge of existential issues. Nurses are well-positioned to work alongside families to provide family-centered care. Our findings have implications for health policies tailored to the needs of children with chronically ill siblings. REPORTING METHOD: This review adheres to the Equator and improving reporting of meta-ethnography (eMERGe) guidelines. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution, because the data comprised previously published studies.

How do public health nurses in Norwegian school health services support siblings of children with complex care needs?

AIMS: There is a paucity of data regarding the care and support provided by Norwegian school health services to siblings of children with complex care needs. Public health nurses are an integral part of these universal services, which focus on health promotion and disease prevention in primary and secondary schools. This study aimed to explore health promotion interventions by public health nurses for siblings in Norwegian schools and to identify regional differences. METHODS: An online national questionnaire was distributed to Norwegian public health nurses and leaders of public health nursing services (N = 487). The questions were related to how the nurses support siblings of children with complex care needs. The quantitative data were analysed using descriptive statistics. An inductive thematic analysis of free-text comments was conducted. ETHICAL APPROVAL: The study was approved by the Norwegian Centre for Research Data. RESULTS: The majority of public health nursing leaders (67%) reported that the services in their municipality had no system to identify siblings or to provide them with routine care. However, 26% of public health nurses reported that routine support was provided to siblings. Regional differences were identified. STUDY LIMITATIONS: This study included responses from 487 PHNs from all four health regions in Norway. The study design is limited and gives a brief outline of the current situation. Further data are needed to provide in-depth knowledge. CONCLUSIONS: This survey provides important knowledge for health authorities and professionals working with siblings, about inadequate support and regional differences in care provided to siblings by school health services.

Development of a factorial survey for use in an international study examining clinicians' likelihood to support the decision to initiate invasive long-term ventilation for a child (the TechChild study).

BACKGROUND: The decision to initiate invasive long-term ventilation for a child with complex medical needs can be extremely challenging. TechChild is a research programme that aims to explore the liminal space between initial consideration of such technology dependence and the final decision. This paper presents a best practice example of the development of a unique use of the factorial survey method to identify the main influencing factors in this critical juncture in a child's care. METHODS: We developed a within-subjects design factorial survey. In phase 1 (design) we defined the survey goal (dependent variable, mode and sample). We defined and constructed the factors and factor levels (independent variables) using previous qualitative research and existing scientific literature. We further refined these factors based on expert feedback from expert clinicians and a statistician. In phase two (pretesting), we subjected the survey tool to several iterations (cognitive interviewing, face validity testing, statistical review, usability testing). In phase three (piloting) testing focused on feasibility testing with members of the target population (n = 18). Ethical approval was obtained from the then host institution's Health Sciences Ethics Committee. RESULTS: Initial refinement of factors was guided by literature and interviews with clinicians and grouped into four broad categories: Clinical, Child and Family, Organisational, and Professional characteristics. Extensive iterative consultations with clinical and statistical experts, including analysis of cognitive interviews, identified best practice in terms of appropriate: inclusion and order of clinical content; cognitive load and number of factors; as well as language used to suit an international audience. The pilot study confirmed feasibility of the survey. The final survey comprised a 43-item online tool including two age-based sets of clinical vignettes, eight of which were randomly presented to each participant from a total vignette population of 480. CONCLUSIONS: This paper clearly explains the processes involved in the development of a factorial survey for the online environment that is internationally appropriate, relevant, and useful to research an increasingly important subject in modern healthcare. This paper provides a framework for researchers to apply a factorial survey approach in wider health research, making this underutilised approach more accessible to a wider audience.

Management pathway for infants requiring chronic care in neonatal units-a scoping review of practices.

Improvements in diagnostic and therapeutic modalities of antenatal care has meant that the neonatal intensive care units (NICU) need to care for infants with complex congenital conditions who need ongoing care post discharge. This, along with improved survival of the extreme preterm infants, provides the neonatal team with a cohort of infants who require long-standing multi-disciplinary input. However, provision of dedicated teams looking after infants with complex medical needs is not commonly reported in NICU workforce structure. The objective of this study is to perform a scoping review of literature on the presence of structured and dedicated complex care management teams in neonatal intensive care unit and their outcomes on care delivery. A scoping review was undertaken to identify all reported literature on existence of chronic care teams in NICU searching medical databases. A narrative synthesis of results was prepared.   Conclusions: The review identified very few clinical models reported with no robust data on clinical outcome measures. What is Known: • Neonatal units are increasingly providing care for infants who require chronic ongoing input from multiple specialties or allied health professionals. A majority of this cohort is formed by extreme preterm infants who require long term respiratory support or nutritional rehabilitation. • There are examples of dedicated clinical teams looking after complex patients in adult and pediatric intensive care outfits leading to improvements in outcome. What is New: • This is first literature review in the authors' knowledge on the use of complex care teams in neonatal intensive care unit. • This article provides a narrative synthesis of the clinical models that have been used by complex care teams in neonatal intensive care unit and whether they have demonstrated tangible benefits in patient outcome.