"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.

Drivers that decrease hospital-delivered care in children with medical complexity: Parental perspectives.

Background and objective: Children with medical complexity (CMC) have chronic and severe conditions leading to medical fragility. CMC represent less than 1% of children but account for one-third of paediatric healthcare expenditures. Enrollment to a complex care program (CCP) decreases health care resource utilization while improving parental satisfaction. An in-depth understanding of how these changes operate in real-world setting is needed to further support CMC and their families. This study aimed at assessing the possible reasons for a decrease in emergency department (ED) visits and hospitalization length of stay related to enrollment to a CCP, based on parental perspectives. Study design: Using a qualitative approach, data were collected using in-depth, semi-structured interviews with parents of CMC enrolled in a CCP from a university hospital centre in Montreal, Canada. The interview guide was co-constructed by an interdisciplinary team, including a parent partner and a clinical nurse coordinator. Themes have been identified inductively, using thematic analysis. Results: Parents identified personalized care, family empowerment and guidance as enablers arising from the CCP that contributed to the decrease in hospital-delivered care utilization. Improvement in medical baseline condition was also identified as a contributing factor, while not necessarily related to program's support. Conclusions: In this study, we identified personalized care, parental empowerment, and guidance as three strategies for a CCP to potentially decrease ED visits and hospital length of stay, from the parents' perspective. Parents identified the clinical nurse coordinator as playing a central role in supporting the implementation of these strategies.

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.

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.

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.

Places of Farewell: A Scoping Review Exploring Factors Influencing the Choice of Place of Death for Children when Death is Expected.

Progression of ill health and death trajectories is different for children with a non-oncology diagnosis. As previous research has focused primarily on children with cancer diagnoses, this scoping review explored what factors influence the parent and/or child's choice of place of death for a child with a non-oncological complex care condition, when death is expected. Eighteen papers were identified considering the preferred place of death. The findings were themed into 1. Diagnostic Factors; 2. Home Factors; 3. Socio-economic Factors; 4. Parent Factors. In conclusion, informed discussions with families that recognize the reason for, and the impact of their choices, are necessary not only for the preferred place of death but also end of life care.

[Informing the clinical reasoning of advanced practice students with nursing theories]. / Éclairer le raisonnement clinique des étudiants en pratique avancée par les théories infirmières.

This article examines the integration of a Clinical Nurse Reasoning (CNR) model into advanced nursing practice training to develop the clinical reasoning skills of advanced practice nurses. The article explores the contribution of Callista Roy's conceptual model of adaptation and presents a global analysis of a complex care situation that justifies the introduction of an CNR model paired with nursing knowledge to ensure comprehensive, quality nursing care.

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.

How family physicians in Singapore recognise complexity during consultations: a qualitative study.

BACKGROUND: The prevalence of persons with complex needs in Singapore is rising. Poor understanding of what constitutes complexity impedes the identification of care gaps and development of interventions to improve care for these individuals. We aim to identify the characteristics contributing to complexity in primary care, from the Family Physicians' (FP) perspectives. METHODS: Focus group discussions (FGDs) were conducted from January to September 2021 with experienced FPs across 14 study sites, employing a qualitative descriptive approach based on a complexity framework. Data were coded independently and categorised using thematic analysis by two independent investigators. RESULTS: Five FGDs were conducted with 18 FPs aged 32 to 57 years old working in different primary care settings, with a mean of 13.5 years of primary care experience. Participants emphasised the need for a unified definition of complexity. Complexity is characterised by the presence of issues spanning across two or more domains (medical, psychological, social or behavioural) that adversely impact medical care and outcomes. Persons with complex needs contrast with persons with medically difficult issues. Medical domain issues include the number of active medical problems, poor chronic disease control, treatment interactions, ill-defined symptoms, management of end-of-life conditions and functional impairment. Psychological domain issues include the presence of mental health conditions or cognitive impairment. Social domain issues include the lack of social support, competing social responsibilities and financial issues, while behavioural domain issues include a lack of trust in healthcare workers, fixed health beliefs and poor health literacy. CONCLUSION: Recognising the medical, psychological, social and behavioural factors that contribute to complexity aids in discerning the diverse needs of individuals with complex needs. This underscores the need for additional support in these pertinent areas.

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.

Acute and Persistent Postoperative Functional Decline in Children with Severe Neurological Impairment: A Qualitative, Exploratory Study.

BACKGROUND: Children with severe neurologic impairment (SNI) regularly require major surgery to manage their underlying conditions. Anecdotal evidence suggests that children with SNI experience unexpected and persistent postoperative functional changes long after the postoperative recovery period; however, evidence from the perspective of caregivers is limited. The purpose of the study was to explore the functional postoperative recovery process for children with SNI. METHODS: Eligible participants were English-speaking caregivers of children with SNI between 6 months and 17 years who were nonverbal, Gross Motor Function Classification Scale level IV/V, and who had surgery/procedure requiring general anesthetic at a tertiary children's hospital between 2012 and 2022. Demographic and basic health information were collected via surveys and corroborated by a review of the child's electronic health record. Semi-structured interviews were conducted and a thematic content analysis was used to formulate results. RESULTS: Data from 12 primary caregiver interviews revealed four main themes: (1) functional changes and complications in the child; (2) feeling unprepared; (3) perioperative support; and (4) changes to caregiver roles. CONCLUSIONS: Postoperative functional decline in children with SNI was prevalent in our sample. Providing pre-operative information to families to describe this phenomenon should be a regular part of family-informed care.

Interdisciplinary Diagnosis and Management of Patients With Interstitial Lung Disease and Connective Tissue Disease.

A diagnosis of interstitial lung diseases (ILD) can be challenging, and the identification of an associated connective tissue disease (CTD) is crucial to estimate prognosis and to establish the optimal treatment approach. Diagnostic delay, limited expertise, and fragmented care are barriers that impede the delivery of comprehensive health care for patients with rare, complex, and multiorgan diseases such as CTD and ILD. In this article, we present our perspective on the interdisciplinary diagnosis and interprofessional treatment of patients with ILD and suspected CTD or CTD at risk of ILD. We outline the structure of our service, delineating the roles and responsibilities of the team members. Additionally, we provide an overview of our patient population, including diagnostic approaches and specific treatments, and illustrate a patient case. Furthermore, we focus on specific benefits and challenges of joint interdisciplinary and interprofessional patient consultations. The importance of rheumatology and pulmonology assessments in specific patient populations is emphasized. Finally, we explore future directions and discuss potential strategies to improve care delivery for patients with CTD-associated ILD.

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.

Qualitative feedback from caregivers in a multidisciplinary pediatric neuromuscular clinic.

OBJECTIVE: This study explored family satisfaction and perceived quality of care in a pediatric neuromuscular care clinic to assess the value of the multidisciplinary clinic (MDC) model in delivering coordinated care to children with neuromuscular disorders, such as cerebral palsy. METHODS: Caregivers of 22 patients were administered a qualitative survey assessing their perceptions of clinic efficiency, care coordination, and communication. Surveys were audio-recorded and transcribed. Thematic analysis was completed using both deductive and inductive methods. RESULTS: All caregivers reported that providers adequately communicated next steps in the patient's care, and most reported high confidence in caring for the patient as a result of the clinic. Four major themes were identified from thematic analysis: Care Delivery, Communication, Care Quality, and Family-Centeredness. Caregivers emphasized that the MDC model promoted access to care, enhanced efficiency, promoted provider teamwork, and encouraged shared care planning. Caregivers also valued a physical environment that was suitable for patients with complex needs. CONCLUSION: This study demonstrated that caregivers believed the MDC model was both efficient and convenient for pediatric patients with neuromuscular disorders. This model has the potential to streamline medical care and can be applied more broadly to improve care coordination for children with medical complexity.

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.

Caring for Children With Medical Complexity: A Clinical, Patient-Focused Curriculum.

Introduction: Caring for children with medical complexity (CMC) requires specialized knowledge and skills. However, no standardized curricula are used across training programs as institutions have varying needs and resources. Methods: We created a patient-focused, interactive curriculum for two CMC topics: feeding/nutrition and pain/irritability. We integrated the 45-minute sessions into morning protected patient-care time on an inpatient pediatric team at an urban tertiary care hospital. Targeted toward all pediatric residents and medical students rotating in inpatient pediatrics over a 12-month period, the sessions used a mix of didactic, discussion, and hands-on activities. Learners on one of two inpatient teams received the curriculum, while those on the other received a curriculum unrelated to CMC and served as a control group. Both groups completed retrospective pre/post self-assessments to evaluate self-efficacy with respect to the learning objectives. Results: Over the 12-month period, 72 surveys were completed for the feeding/nutrition session, 78 surveys for the pain/irritability session, and 42 control surveys. The intervention group saw the greatest increase in self-efficacy scores generally in the feeding/nutrition session. All eight learning objectives saw significant improvement in self-efficacy scores for the intervention group. There was significantly greater improvement in self-efficacy for the intervention group compared to the control for all eight learning objectives. Discussion: Through this patient-focused curriculum, learners had improved self-efficacy scores compared to the natural learning occurring on the inpatient service. The curriculum could be adapted to fit the needs of other institutions and provides a practical, hands-on approach to learning about caring for CMC.