"I Am Forever Changed": A Phenomenological Study of the Existential Experiences of Parents of Children and Young People With Complex Care Needs.

AIM: To explore the existential lived experiences of parents of children and young people with complex care needs. DESIGN: An explorative qualitative design. METHODS: We conducted 16 in-depth interviews with parents of children and young people with complex care needs across Norway from February to May 2022. Data collection and analysis were guided by the theoretical framework of van Manen's phenomenology of practice approach. RESULTS: Four distinct but interwoven themes reflecting the comprehensive and holistic nature of parents' existential lived experiences emerged: lived body: "I am forever changed"; lived space: Seeking sanctuary; lived time: "Time doesn't seem to exist"; and lived self-other: Parents' changing relationships. CONCLUSIONS: Parents' ongoing efforts to manage fluctuations in their daily lives profoundly affect the existential aspects of their well-being, suggesting that respectful and attentive nurse-parent relationships can nurture existential growth. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: There is a crucial need for a genuine nursing presence characterised by an attitude of open sensitivity and attentive listening to parents' existential experiences. Nurses should embrace the opportunity to engage in respectful and attentive dialogues with parents. Acknowledging that the insights emerging from these conversations can improve integrated and personalised nursing services worldwide. IMPACT: Parents of children and young people with complex care needs often experience suboptimal healthcare. Additionally, access to quality healthcare services, particularly in rural areas, is limited, creating inefficiencies and coordination challenges. This study provides nurses, other health care professionals, researchers, and decision-makers with valuable perspectives on supporting parents' existential needs which may significantly impact their overall well-being and coping abilities, contributing to a more compassionate approach to family care. REPORTING METHOD: Consolidated Criteria for Reporting Qualitative Research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: Parents of children and young people with complex care needs provided valuable feedback on the findings and implications of this work.

Reading Groups as a Health-Promoting Intervention in Upper Secondary Schools: A Qualitative Study.

OBJECTIVES: To explore public health nurses' (PHN) perceptions and experiences of supporting siblings of children with complex care needs (CCNs) by using reading groups as a health promotion intervention in upper secondary schools. DESIGN: An action research approach using a qualitative design. SAMPLE: Interviews with 10 PHNs. MEASUREMENTS: Thematic analysis. RESULTS: The analysis resulted in the overarching theme "A much needed health promotion intervention in upper secondary schools," presented in terms of the following three themes: (1) supporting siblings is important, but resources and established procedures are lacking. (2) Reading groups using fiction have potential as a health-promoting intervention in upper secondary schools. (3) A realistic collaborative approach is necessary for reading groups to be implemented. CONCLUSION: PHNs have no established procedures to support siblings of children with CCNs in upper secondary schools. Reading groups can enable PHNs to reach out and support these siblings. Providing the intervention can be a way of reaching all pupils and thus creating an understanding of the plight of siblings who have a brother or sister with CCNs.

Conceptualizing burnout from the perspective of parents of children with complex care needs.

Objective: The purpose of this study was to investigate how parents of children with complex care needs conceptualize burnout from the perspective of parents themselves. Methods: We conducted semi-structured interviews with 38 parents, selected for maximal variation in parental, child, and family characteristics. Inductive thematic analysis was employed. Results: Burnout was conceptualized as encompassing three themes: having a reoccurring long-term nature, commencing with symptoms of stress progressing into exhaustion, and ending in a survival mode wherein parents worked hard to project an image of everything being well and under control (fighting) while distancing physically and emotionally from others and themselves (fleeing). Conclusion: Burnout involves specific aspects of caregiving and parenting, such as long-term responsibility for the child, which cannot be relinquished. Furthermore, burnout may also be 'hidden': not always showing to the outside world, which requires extra attention and vigilance among parent's informal and formal networks. Awareness of the various interpretations of the term may foster constructive communication. Innovation: Focusing on parents' individual experiences has illuminated new aspects of burnout. By purposively sampling a variety of parents of children with complex care needs, a broader understanding of the meaning of the term 'burnout' from the perspective of parents was achieved.

Harnessing health information technology to promote equitable care for patients with limited English proficiency and complex care needs.

BACKGROUND: Patients with language barriers encounter healthcare disparities, which may be alleviated by leveraging interpreter skills to reduce cultural, language, and literacy barriers through improved bidirectional communication. Evidence supports the use of in-person interpreters, especially for interactions involving patients with complex care needs. Unfortunately, due to interpreter shortages and clinician underuse of interpreters, patients with language barriers frequently do not get the language services they need or are entitled to. Health information technologies (HIT), including artificial intelligence (AI), have the potential to streamline processes, prompt clinicians to utilize in-person interpreters, and support prioritization. METHODS: From May 1, 2023, to June 21, 2024, a single-center stepped wedge cluster randomized trial will be conducted within 35 units of Saint Marys Hospital & Methodist Hospital at Mayo Clinic in Rochester, Minnesota. The units include medical, surgical, trauma, and mixed ICUs and hospital floors that admit acute medical and surgical care patients as well as the emergency department (ED). The transitions between study phases will be initiated at 60-day intervals resulting in a 12-month study period. Units in the control group will receive standard care and rely on clinician initiative to request interpreter services. In the intervention group, the study team will generate a daily list of adult inpatients with language barriers, order the list based on their complexity scores (from highest to lowest), and share it with interpreter services, who will send a secure chat message to the bedside nurse. This engagement will be triggered by a predictive machine-learning algorithm based on a palliative care score, supplemented by other predictors of complexity including length of stay and level of care as well as procedures, events, and clinical notes. DISCUSSION: This pragmatic clinical trial approach will integrate a predictive machine-learning algorithm into a workflow process and evaluate the effectiveness of the intervention. We will compare the use of in-person interpreters and time to first interpreter use between the control and intervention groups. TRIAL REGISTRATION: NCT05860777. May 16, 2023.

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.

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.

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.

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.

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.

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.

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.

Decision-making and related outcomes of patients with complex care needs in primary care settings: a systematic literature review with a case-based qualitative synthesis.

BACKGROUND: In primary care, patients increasingly face difficult decisions related to complex care needs (multimorbidity, polypharmacy, mental health issues, social vulnerability and structural barriers). There is a need for a pragmatic conceptual model to understand decisional needs among patients with complex care needs and outcomes related to decision. We aimed to identify types of decisional needs among patients with complex care needs, and decision-making configurations of conditions associated with decision outcomes. METHODS: We conducted a systematic mixed studies review. Two specialized librarians searched five bibliographic databases (Medline, Embase, PsycINFO, CINAHL and SSCI). The search strategy was conducted from inception to December 2017. A team of twenty crowd-reviewers selected empirical studies on: (1) patients with complex care needs; (2) decisional needs; (3) primary care. Two reviewers appraised the quality of included studies using the Mixed Methods Appraisal Tool. We conducted a 2-phase case-based qualitative synthesis framed by the Ottawa Decision Support Framework and Gregor's explicative-predictive theory type. A decisional need case involved: (a) a decision (what), (b) concerning a patient with complex care needs with bio-psycho-social characteristics (who), (c) made independently or in partnership (how), (d) in a specific place and time (where/when), (e) with communication and coordination barriers or facilitators (why), and that (f) influenced actions taken, health or well-being, or decision quality (outcomes). RESULTS: We included 47 studies. Data sufficiency qualitative criterion was reached. We identified 69 cases (2997 participants across 13 countries) grouped into five types of decisional needs: 'prioritization' (n = 26), 'use of services' (n = 22), 'prescription' (n = 12), 'behavior change' (n = 4) and 'institutionalization' (n = 5). Many decisions were made between clinical encounters in situations of social vulnerability. Patterns of conditions associated with decision outcomes revealed four decision-making configurations: 'well-managed' (n = 13), 'asymmetric encounters' (n = 21), 'self-management by default' (n = 8), and 'chaotic' (n = 27). Shared decision-making was associated with positive outcomes. Negative outcomes were associated with independent decision-making. CONCLUSION: Our results could extend decision-making models in primary care settings and inform subsequent user-centered design of decision support tools for heterogenous patients with complex care needs.

Experiences, Motivations, and Perceived Impact of Participation in a Facebook-Based Support Group for Caregivers of Children and Youth With Complex Care Needs: Qualitative Descriptive Study.

BACKGROUND: Caregivers of children and youth with complex care needs (CCNs) often require considerable support to ensure the well-being of their families. Social media present an opportunity to better support caregivers through computer-mediated communication for social support. Peer-to-peer (P2P) support groups are a way in which caregivers are accessing needed support; however, the experiences of caregivers who use these groups and the perceived impact that participation has on caregivers of children and youth with CCNs are not known. OBJECTIVE: This study aimed to explore the experiences of caregivers of children and youth with CCNs who use a Facebook-based P2P support group to communicate, understand their motivations to use the group, and investigate its perceived impact on knowledge of programs and services and sense of community belonging among caregivers. METHODS: A qualitative descriptive design was used to explore the experiences and perceived impact of a Facebook-based (Meta Platforms) P2P support group for caregivers of children and youth with CCNs in New Brunswick, Canada. The group was launched on the web in October 2020, during the COVID-19 pandemic, and resulted in 108 caregivers joining the group. A web-based survey was distributed, and semistructured interviews were conducted in February 2021 with a subsample of members. Thematic analysis was used to identify and report patterns related to caregivers' experiences and perceived impacts of participation. RESULTS: A subsample of members in the Facebook group completed the web-based survey (39/108, 36.1%) and interviews (14/108, 12.9%). A total of 5 themes emerged from the interviews: safe space, informational support and direction, web-based connection with peers, impact on knowledge of programs and services, and degree of community belonging. Participants reported joining the group to obtain geography-specific information support and connect with peers. Many participants reported an improvement in their knowledge of programs and services and felt connected to the community; however, the short observation period and diversity among the caregiver population were cited as barriers to community belonging. CONCLUSIONS: Social media present an important opportunity to facilitate the exchange of support between patients and caregivers in an accessible and curated environment. Findings from this study suggest that involvement in web-based, geography-specific P2P support groups can influence perceived knowledge of services and resources and sense of community belonging among caregivers of children and youth with CCNs. Furthermore, this study provides insight into the experiences and motivations of caregivers of children and youth with CCNs who participate in a private social media environment.

Exploring the Use of a Facebook-Based Support Group for Caregivers of Children and Youth With Complex Care Needs: Qualitative Descriptive Study.

BACKGROUND: Caregivers of children and youth with complex care needs (CCN) require substantial support to ensure the well-being of their families. Web-based peer-to-peer (P2P) support groups present an opportunity for caregivers to seek and provide timely informational and emotional support. Despite the widespread use of social media for health-related support across diverse patient and caregiver populations, it is unclear how caregivers of children and youth with CCN use and potentially benefit from these groups. OBJECTIVE: The aim of this study is to explore the use of a web-based P2P support group for caregivers of children and youth with CCN in New Brunswick, Canada, and investigate factors related to its use by members. METHODS: The study sample consisted of individuals who joined a closed Facebook group and an analysis of content published to the group. In phase 1, a Facebook group was developed in consultation with a patient and family advisory council, and members were recruited to the group. Phase 2 of this study consisted of an observation period during which posts and related interactions (ie, likes, loves, and comments) by members were collected. In phase 3, a web-based survey was distributed, and semistructured interviews were conducted with a subsample of group members. Survey and interview data were analyzed using thematic analysis. RESULTS: A total of 108 caregivers joined the Facebook group between October 2020 and March 2021. There were 93 posts with 405 comments and 542 associated interactions (448/542, 82.7% likes and 94/542, 17.3% loves). Of these 93 posts, 37 (40%) were made by group members, and 56 (60%) were made by moderators. Of the 108 members, a subsample of 39 (36.1%) completed a web-based survey, and 14 (13%) participated in the interviews. Content analyses of posts by members revealed that inquiry (17/37, 46%), informational (15/37, 41%), and emotional posts (4/37, 11%) were the most common. Emotional posts received the highest number of interactions (median 24.5). In total, 5 themes emerged from the interviews related to the use of the group and mediating factors of interactions between group members: resource for information, altruistic contribution, varying level of engagement, perceived barriers to and facilitators of group activity, and moderators as contributing members. CONCLUSIONS: These findings demonstrate that caregivers of children and youth with CCN seek geography-specific P2P support groups to meet informational and social support needs. This study contributes to the knowledge on how caregivers use Facebook groups to meet their support needs through moderate and passive engagement.

Caregiver experiences with transitions from pediatric to adult healthcare for children with complex care needs.

BACKGROUND: Caring for a youth with complex care needs (CCN) who is transitioning from paediatric to adult healthcare can produce many challenges. For example, caregivers must often manage their youth's care at home, coordinate care and advocate for their youth. Experiences of fragmented and uncoordinated care often result in caregivers feeling ill-prepared and uncertain about the transition process. The current study explores caregiver experiences with the transition from paediatric to adult healthcare for youth with CCN in a semi-rural Canadian province. METHODS: This study used a cross-sectional qualitative descriptive design, involving semi-structured interviews with caregivers of youth with CCN who were preparing for, in the process of, or completed a transition from paediatric to adult healthcare within the province of New Brunswick, Canada. Thematic analysis focused on describing caregiver experiences with the transition from paediatric to adult healthcare. RESULTS: Seventeen caregivers completed interviews for this study. Four key themes emerged relating to caregiver experiences with the transition from paediatric to adult healthcare for these youth: (1) lack of caregiver support, (2) lack of continuity of care, (3) need for collaborative care and (4) difficulty navigating transition. CONCLUSION: There is a clear need to address the challenges experienced by youth with CCN and their caregivers throughout the transition from paediatric to adult healthcare. An effective transition strategy should involve early and coordinated planning between the paediatric and adult care team; continued communication across the care team throughout the transition process; and coordination among health, education and social services.

Growing pains: Lessons learned from a failed mobile mindfulness clinical trial for patients with complex care needs.

This paper discusses lessons learned from a failed clinical trial investigating the use of a mobile application (app) to deliver a mindfulness intervention to middle-aged and older adults receiving services at a rehabilitation hospital in Ontario, Canada. A randomized controlled trial with 82 participants was planned, with the experimental group receiving access to a mindfulness app and a wait-list control group receiving access to the app after 4 weeks; however, the study could not be completed due to low recruitment rates. This implementation failure was considered from the perspective of the PARIHS framework. More specifically, Three key recruitment challenges were identified, and recommendations for future research provided. Firstly, the increasingly complex care needs of the study population appeared to influence eligibility; it would be beneficial for future research to consider adopting strategies to better understand the needs of the target population. Secondly, participants' stage of care and readiness of change likely negatively influenced compliance and retention in this study, and should be assessed in future research. Finally, a lack of clinician integration into the research team negatively impacted recruitment in this study; future studies should consider integrating direct service providers into the research team as this may increase buy-in and referral rates. The challenges and recommendations outlined can inform design and implementation of future studies in this area.

What matters in care continuity on the chronic care trajectory for patients and family carers?-A conceptual model.

AIMS AND OBJECTIVES: To describe essential aspects of care continuity from the perspectives of persons with complex care needs and their family carers. BACKGROUND: Continuity of care is an important aspect of quality, safety and efficiency. For people with multiple chronic diseases and complex care needs, care must be experienced as connected and coherent, and consistent with medical and individual needs. The more complex the need for care, the greater the need for continuity across different competencies, services and roles. DESIGN: A constructivist grounded theory approach was applied. METHODS: Sixteen patients with one or more chronic diseases needing both health care and social care, living in their private homes, and twelve family carers, were recruited. Semi-structured interviews were conducted and analysed with constructivist grounded theory. The COREQ checklist was followed. RESULTS: A conceptual model of care continuity was constructed, consisting of five categories that were interconnected through the core category: time and space. Patients' and family carers' experiences of care continuity were closely related to timely personalised care delivery, where access to tailored information, regardless of who was performing a care task, was essential for mutual understanding. This required clarity in responsibilities and roles, interprofessional collaboration and achieving a trusting relationship between each link in the chain of care, over time and space. To achieve care continuity, all the identified categories were important, as they worked in synergy, not in isolation. CONCLUSION: Care continuity for people with complex care needs and family carers is experienced as multidimensional, with several essential aspects that work in synergy, but varies over time and depends on each person's own resources and situational and contextual circumstances. RELEVANCE TO CLINICAL PRACTICE: The findings promote understanding of patients' and family carers' experiences of care continuity and may guide the delivery of care to people with complex care needs.

Clustering Complex Chronic Patients: A Cross-Sectional Community Study From the General Practitioner's Perspective.

OBJECTIVE: Characterize subgroups of Complex Chronic Patients (CCPs) with cluster analysis from the general practitioner's perspective. STUDY DESIGN: Cross-sectional population-based study. SETTING: Three Primary Care urban centres for a reference population of 43,647 inhabitants over 14 years old in Sabadell, Catalonia, Spain. METHODS: Complexity is defined by the independent clinical judgment of general practitioners with the aid of complexity domains (both clinical and social). We used a Two-Step Cluster method to identify relevant subgroups of CCPs. RESULTS: Three relevant subgroups were identified. The first one was mainly managed by primary care professionals, and 63% of its CCPs belonged to the high-risk stratum of the Adjusted Morbidity Groups (GMA). The second subgroup included younger patients than the other two clusters, and showed the highest ratios of social deprivation and severe mental disease; 48% of its CCPs belonged to the high-risk stratum of the GMA. A third cluster included patients who belonged to the high-risk stratum of the GMA. Their age was similar to that of the patients in the first cluster, but they showed the highest values in the following areas: (i) risk of admission; (ii) proportion of advanced chronic disease and limited-life prognosis; (iii) functional loss and (iv) geriatric syndromes, along with special uncertainty in decision-making and clinical management. CONCLUSIONS: Characterization of CCPs shows clearly distinct profiles of needs, which provides an improved epidemiological picture by identifying clusters of patients who are likely to benefit from targeted interventions.

Characteristics of Departments That Provided Primary Support for Households with Complex Care Needs in the Community: A Preliminary Cross-Sectional Study.

To prevent emergency admissions and save medical costs, support should be provided to households that include people with complex care needs to allow them to continue living in their own homes. This community-based, cross-sectional study was conducted to (1) identify which departments that public health nurses (PHNs) worked have been the primary providers of support for households with complex care needs and (2) clarify the length of time required by each department to resolve primary health problems. We analyzed 148 households with complex care needs that were registered in City A from April 2018 to July 2019. Four types of departments were the primary support providers for complex care households: the department supporting persons with disabilities (n = 54, 36.5%), public/community health centers (n = 47, 31.8%), department of older adults (n = 29, 19.6%), and welfare offices (n = 18, 12.2%). The Mantel-Cox test showed that welfare offices mainly supported households in economic distress and needed significantly less time to resolve their primary health issues than other departments. For early detection and resolution of primary health problems for households with complex care needs, PHNs and healthcare professionals should focus on their economic distress and enhanced multidisciplinary approaches.