Informal carer involvement in the transition of medicines-related care for patients moving from hospital to home: a realist review protocol.

INTRODUCTION: Transition of care for a patient between hospital and home can cause disruption to normal routines, increasing the risk of medicines-related harm. The transition from hospital to home is more complex when a patient does not self-manage their medicines but relies on an informal or unpaid carer (eg, spouse, family member or friend) to provide support. Given the day-to-day medicines-related support provided by informal carers, there is a need to understand how informal carers manage the transition of care from hospital to home; what aspects of hospital discharge act as barriers and facilitators to their involvement and when, how and why these impact patients. METHODS AND ANALYSIS: A realist review will be undertaken to develop a programme theory. The programme theory will theorise which medicines-related interventions are useful to carers, and how they are useful. It will outline what aspects of those interventions are the most useful and why, and how context influences engagement and medicine-related outcomes. The review will be reported in line with the Realist and Meta-narrative Evidence Syntheses: Evolving Standards guidelines. Data will be selected, screened and extracted based on defined inclusion and exclusion criteria and relevance to the developing programme theory with the involvement of at least two authors acting independently. Inclusion criteria relate to the relevance to hospital discharge where patients move back to their home, where a carer is involved and where interventions relate to medicines use. Searches will be conducted in PubMed, CINAHL (via EBSCOhost) and EMBASE databases (see supplementary materials for a draft search strategy).Patients and public, participation, involvement and engagement (PPIE) will be incorporated into all stages of the review through iterative engagement and discussion with patient, carers and representatives from carer organisations. The review will follow four steps: (1) development of the initial programme theory, (2) evidence search, (3) selection, extracting, and organising data and (4) synthesising evidence and drawing conclusions.Informal carer involvement in transitions of care is a complex and varied phenomena. The programme theory will be shaped by sustained PPIE reflecting the priorities and experiences of lived experience. The realist review be progressively focused so we can develop a better understanding of carer involvement in patient transitions when moving from hospital to home relating to medicines use. ETHICS AND DISSEMINATION: Ethical approval is not required. The findings of the review will be disseminated via journal articles and through patient and public facing resources such as a visual patient-public-carer focused summary. PROSPERO REGISTRATION NUMBER: CRD42021262827.

Cost comparison analysis of continuous versus intermittent antimicrobial therapy infusions in inpatient and outpatient care: real-world data from Finland.

OBJECTIVE: This study compared the costs and nursing time associated with the delivery of continuous infusion of antibiotics via elastomeric infusion pumps (EIP) versus conventional intermittent infusion (CII) across different care pathways. DESIGN: Retrospective real-world data informed a cost comparison analysis that compared costs and nursing hours between infusion of antibiotics via EIP versus CII across eight care pathways in inpatient or outpatient care during infection episodes. Real-world data were obtained from patients treated within a year with parenteral antimicrobial therapy in Päijät-Häme Region, Finland. SETTING: Inpatient care with hospital admission and outpatient care at hospital at home in Päijät-Häme Region in Finland. PARTICIPANTS: 3778 patients with a total of 4214 infection episodes treated with intravenous antimicrobial therapy. INTERVENTIONS: Eight treatment strategies with various combinations of EIP and CII administered in inpatient or outpatient care. PRIMARY AND SECONDARY OUTCOME MEASURES: Direct costs and nursing time. RESULTS: Skin and soft tissue infections accounted for the highest number of episodes treated with EIP overall (30.8%; 74 out of 240 episodes) and in outpatient care specifically (53.3%; 128 out of 240 episodes). Compared with inpatient care costs with CII (€4590 per episode), treating skin and soft tissue infections in outpatient care with EIP or CII incurred only 24% (€1104) and 35% (€1620) of the costs, respectively. Across all treatment strategies and infections studied, the use of EIP consistently required less nursing time. The highest nursing time in the outpatient care was observed in sepsis episodes treated with CII (37 hours with CII vs 7 hours with EIP per episode). CONCLUSION: Delivery of antimicrobial therapy using continuous infusions with EIP instead of CII can significantly decrease the nursing time and cost in both inpatient and outpatient care. For skin and soft tissue infections and sepsis, the utilisation of EIP is a cost-saving option in outpatient care compared with the use of CII.

Enhancing patient participation in discharge medication communication: a feasibility pilot trial.

OBJECTIVES: To pilot test a co-designed intervention that enhances patient participation in hospital discharge medication communication. DESIGN: Pilot randomised controlled trial. SETTING: One tertiary hospital. PARTICIPANTS: Patients who were ≥45 years of age; ≥1 chronic illness and ≥1 regularly prescribed medication that they manage at home were recruited between October 2022 and May 2023. Healthcare professionals on participating units completed surveys. INTERVENTION: The co-designed intervention included three websites: a medication search engine, a medication question builder and tools to facilitate medication management at home. Inpatient posters contained QR codes to provide access to these websites. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcomes were the feasibility of study processes and intervention acceptability. Feasibility of study processes was measured in terms of recruitment, fidelity, retention, missing data and contamination. Patients in the intervention group and healthcare professionals on the wards self-reported intervention acceptability. Secondary outcomes were medication understanding, use, self-efficacy and healthcare utilisation. RESULTS: 60 patients were recruited and randomised; half in each study group. The intervention was largely delivered as intended, and 99.7% of data collected was complete. In total, 16/59 (27.1%) patients were lost to follow-up 28 days after hospital discharge, and 3 patients in the usual care group reported that they saw the intervention poster prior to hospital discharge. 21 of 24 intervention group patients (87.5%) deemed the intervention acceptable, while half of the healthcare professionals (n=5, 50%) thought it was acceptable. CONCLUSIONS: We demonstrated that in a future definitive trial, intervention fidelity would be high with little missing data, and patients would likely find the intervention acceptable. Thus, a larger trial may be warranted, as the intervention is implementable and approved by patients. However, additional strategies to increase recruitment and retention of eligible participants are needed. Healthcare professionals may require more preparation for the intervention to enhance their perceptions of intervention acceptability. TRIAL REGISTRATION NUMBER: ACTRN12622001028796.

Needs of family caregivers of hospitalised adults with dementia during care transitions: a qualitative study in a US Department of Veterans Affairs Hospital.

OBJECTIVE: To identify the needs of caregivers of hospitalised adults with dementia in the hospital and during care transitions. DESIGN: Pragmatic qualitative inquiry with semi-structured interviews. SETTING: Michael E. DeBakey Veterans Affairs Medical Center in Houston, Texas, USA. PARTICIPANTS: 12 family caregivers (family member (n=11); friend (n=1)) and 15 health professionals (hospital medicine physicians (n=4), inpatient nurse case managers (n=2), social workers (n=4), outpatient geriatrics providers (n=2), a primary care provider (n=1), geriatric psychiatrists (n=2)) were interviewed. Caregivers were recruited while their care recipient was hospitalised and were interviewed at least 2 weeks after the care recipient was discharged from the hospital. Health professionals were eligible for the study if they provided care to patients with dementia in the inpatient or outpatient setting. RESULTS: Four recommendations emerged from the analysis: (1) engage caregivers as partners in the care team, (2) provide dementia-specific information and training, (3) connect caregivers to home and community-based services and (4) provide care navigation and support for the caregiver posthospitalisation. CONCLUSIONS: Hospital care transitions are challenging for caregivers of hospitalised adults living with dementia. Care transition interventions designed to support caregivers with tailored, dementia-specific information and services are needed.

What do patients with heart failure disclose about medication adherence at home to their hospital and primary care doctors? Exploratory interaction-based observational cohort study.

OBJECTIVES: The main objective of this study was twofold: to investigate what kind of information patients with heart failure (HF) tell their doctors about their medication adherence at home, and how often such information is provided in consultations where medication reconciliation is recommended. To meet these objectives, we developed an analysis to recognise, define, and count (1) patient utterances including medication adherence disclosures in clinical interactions (MADICI), (2) MADICI including red-flags for non-adherence, and (3) MADICI initiated by patients without prompts from their doctor. DESIGN: Exploratory interaction-based observational cohort study. Inductive microanalysis of authentic patient-doctor consultations, audio-recorded at three time-points for each patient: (1) first ward visit in hospital, (2) discharge visit from hospital, and (3) follow-up visit with general practitioner (GP). SETTING: Norway (2022-2023). PARTICIPANTS: 25 patients with HF (+65 years) and their attending doctors (23 hospital doctors, 25 GPs). RESULTS: We recognised MADICI by two criteria: (1) they are about medication prescribed for use at home, AND (2) they involve patients' action, experience, or stance regarding medications. Using these criteria, we identified 427 MADICIs in 25 patient trajectories: 143 (34%) at first ward visit (min-max=0-35, median=3), 57 (13%) at discharge visit (min-max=0-8, median=2), 227 (53%) at GP-visit (min-max=2-24, median=7). Of 427 MADICIs, 235 (55%) included red-flags for non-adherence. Bumetanide and atorvastatin were most frequently mentioned as problematic. Patients initiated 146 (34%) of 427 MADICIs. Of 235 'red-flag MADICIs', 101 (43%) were initiated by patients. CONCLUSIONS: Self-managing older patients with HF disclosed information about their use of medications at home, often including red-flags for non-adherence. Patients who disclosed information that signals adherence problems tended to do so unprompted. Such disclosures generate opportunities for doctors to assess and support patients' medication adherence at home.

The experience of children and family in pediatric home hospitalization: A systematic review of qualitative evidence.

OBJECTIVE: To synthesize the experiences of children and parents/caregivers in the process of pediatric home hospitalization (PHH). INTRODUCTION: The practice of home hospitalization (HH), while not a new concept has expanded in recent years. This model of care consists of continuous care at home for children with acute illness or acute chronic disease and presents itself as an alternative to conventional hospitalization (Middel, 2007; Parab et al., 2013). Excellence in pediatric healthcare is fundamental and this review provides a necessary understanding towards the experiences of children and their families in HH. METHODS: Research was carried out in three phases and included both published and grey literature in the CINAHL, MEDLINE, MedicLatina, PubMed, Cochrane Library, Psychology and Behavioral Sciences Collection, and OpenAIRE databases to find relevant articles. Studies published in Portuguese, English, Spanish, and French with no time limit were considered. RESULTS: Findings were aggregated into five categories: communication and care experiences, parental dynamics and role carers, benefits and challenges for parents and children, relationship between parents, children's, and healthcare professionals and enhancing continuity of care and family support. According to ConQual the confidence level of the results was moderate in all articles. CONCLUSIONS: Through PHH, it is possible to avoid the impact of a conventional hospitalization since it promotes family union, increases the affective bond, the feeling of security, comfort, tranquillity, relief, confidence, and autonomy, reducing stressors such as anxiety, fear, nervousness, uncertainty, and fear.

Acquisition of mastery by the caregiver for the continuity of care after hospital discharge.

Caregivers who provide transitional care to people with functional dependence require the mastery of skills that ensure successful continuity of care. This domain of care requires nursing interventions to support the caregiver. This study aims to understand aspects of the development of caregiver mastery for continuity of care after hospital discharge. METHOD: Exploratory, qualitative research carried out in a university hospital in Salvador, Bahia, Brazil, from July to December 2022, with fourteen qualified caregivers participating. Data was organized using the software Web Qualitative Data Analysis, analyzed by thematic content analysis, and discussed in light of the Theory of Transitions proposed by Dr. Afaf Meleis. RESULTS: The caregivers were women who cared for functionally dependent individuals and received training for care during hospitalization and telephone follow-up after discharge. Twelve achieved mastery; those with less experience needed more calls to acquire mastery. CONCLUSIONS: Discharge planning and caregiver education are essential to support them in safe and effective hospital-home transitions.

Transition of Intensive Care Unit Patients and Their Families to Home After Acute Hospital Care.

Patients in the intensive care unit (ICU) increasingly are expected to eventually return home after acute hospital care. Yet transitional care for ICU patients and their families is often delayed until the patient is about to be transferred to another location or level of care. Transitions theory is a middle-range nursing theory that aims to provide guidance for safe and effective nursing care and research while an individual experiences a transition. Intensive care unit nurses are well positioned to provide ICU transitional care planning early. This article applies the transitions theory as a theoretical model to guide the study of the transition to home after acute hospital care for ICU patients and their families. This theory application can help ICU nurses provide holistic patient- and family-centered transitional care to achieve optimal outcomes by addressing the predischarge and postdischarge needs of patients and families.

A scoping review of hospital to home transitional care programmes for stroke survivors.

AIM: The study was aimed at exploring the current scope of hospital to home transitional care programmes for stroke survivors. BACKGROUND: Stroke survivors face the dilemma of solving many complex problems that leave survivors at high risk for readmission as they discharge from hospital. The transitional care model has proved to be effective in reducing readmissions and mortality, thereby improving health outcomes and enhancing patient satisfaction for survivors with stroke. DESIGN: A scoping review. METHODS: Conducted in accordance with the Joanna Briggs Institute (JBI) Methodology for Scoping Reviews. DATA SOURCES: A comprehensive search was conducted in nine databases, including PubMed, Web of Science, Cochrane Library, EMBASE, CINAHL, Medline, China Knowledge Net-work, Wanfang Database and China Biomedical Literature Database (SinoMed) from January 2014 to June 2023. RESULTS: Title and abstract screening was performed on 10,171 articles resulting in 287 articles for full-text screening. Full-text screening yielded 49 articles that met inclusion criteria. CONCLUSION: This study identified transitional care programmes for stroke survivors, as well as areas for future consideration to be explored in more depth to help improve transitional care for stroke survivors as they transition from hospital to home. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: This study demonstrates that multidisciplinary collaboration becomes an integral part of the transitional care model for stroke survivors, which provides comprehensive and precise medical care to them. REPORTING METHOD: PRISMA checklist for scoping reviews. PATIENT AND PUBLIC CONTRIBUTION: No patient or public contribution was part of this study.

Pharmacist-led medication management services: a qualitative exploration of transition-of-care cardiovascular disease patient experiences.

OBJECTIVE: Hospitalisation due to medication-related problems is a major health concern, particularly for those with pre-existing, or those at high risk of developing cardiovascular disease (CVD). Postdischarge medication reviews (PDMRs) may form a core component of reducing hospital readmissions due to medication-related problems. This study aimed to explore postdischarge CVD patients' perspectives of, and experiences with, pharmacist-led medication management services. A secondary aim explored attitudes towards the availability of PDMRs. DESIGN: An interpretative qualitative study involving 16 semistructured interviews. Data were analysed using an inductive thematic approach. SETTING: Patients with CVD discharged to a community setting from the John Hunter Hospital, an 820-bed tertiary referral hospital based in New South Wales, Australia. PARTICIPANTS: Patients with pre-existing or newly diagnosed CVD who were recently discharged from the hospital. RESULTS: A total of 16 interviews were conducted to reach thematic saturation. Nine participants (56%) were male. The mean age of participants was 57.5 (±13.2) years. Three emergent themes were identified: (1) poor medication understanding impacts transition from the hospital to home; (2) factors influencing medication concordance following discharge and (3) perceived benefits of routine PDMRs. CONCLUSIONS: There is a clear need to further improve the quality use of medicines and health literacy of transition-of-care patients with CVD. Our findings indicate that the engagement of transition-of-care patients with CVD with pharmacist-led medication management services is minimal. Pharmacists are suitable to provide essential and tailored medication review services to patients with CVD as part of a multidisciplinary healthcare team. The implementation of routine, pharmacist-led PDMRs may be a feasible means of providing patients with access to health education following their transition from hospital back to community, improving their health literacy and reducing rehospitalisations due to medication-related issues.

Designing eHealth interventions for children with complex care needs requires continuous stakeholder collaboration and co-creation.

Objective: Hospital-to-home (H2H) transitions challenge families of children with medical complexity (CMC) and healthcare professionals (HCP). This study aimed to gain deeper insights into the H2H transition process and to work towards eHealth interventions for its improvement, by applying an iterative methodology involving both CMC families and HCP as end-users. Methods: For 20-weeks, the Dutch Transitional Care Unit consortium collaborated with the Amsterdam University of Applied Sciences, HCP, and CMC families. The agile SCREAM approach was used, merging Design Thinking methods into five iterative sprints to stimulate creativity, ideation, and design. Continuous communication allowed rapid adaptation to new information and the refinement of solutions for subsequent sprints. Results: This iterative process revealed three domains of care - care coordination, social wellbeing, and emotional support - that were important to all stakeholders. These domains informed the development of our final prototype, 'Our Care Team', an application tailored to meet the H2H transition needs for CMC families and HCP. Conclusion: Complex processes like the H2H transition for CMC families require adaptive interventions that empower all stakeholders in their respective roles, to promote transitional care that is anticipatory, rather than reactive. Innovation: A collaborative methodology is needed, that optimizes existing resources and knowledge, fosters innovation through collaboration while using creative digital design principles. This way, we might be able to design eHealth solutions with end-users, not just for them.

A Proposal for a Multidisciplinary Integrated Oral Health Network for Patients Undergoing Major Orthopaedic Surgery (IOHN-OS).

The passing of the years of life physiologically leads to the accumulation of changes in tissues in the oral cavity, influencing dentition, chewing and swallowing mechanisms, and the oral microbiota. Some diseases and medications can aggravate oral symptoms and negatively influence eating behaviours, increasing the likelihood of becoming malnourished. This could make older individuals more vulnerable to complications when undergoing major orthopaedic surgery. Hidden infection foci in the oral cavity are a recognised cause of post-operative periprosthetic joint infections. Dysfunctional oral problems might also compromise feeding after surgery when good nutrition represents a fundamental aspect of a proper recovery. To manage these shortcomings, in this article, the authors hypothesise a multidisciplinary path of care named the Integrated Oral Health Network applied to major Orthopaedic Surgery (IOHN-OS). This peri-operative initiative would include pre-operative oral health screening and risk management by a dental team, patient education programmes before and after surgery, and bedside gerodontology actions like oral care and meal and eating support for fragile individuals. The IOHN-OS has the potential to reshape the concept of suitability for major orthopaedic surgery and generate momentum for designing community-based surveillance programmes that can keep the mouths of older subjects healthy for a long time.

Prioritizing mobility factors for assessment during the transition of older adults from hospital to home: a cross-sectional survey of physiotherapists in Southeastern Nigeria.

BACKGROUND: Assessing all factors influencing older adults' mobility during the hospital-to-home transition is not feasible given the complex and time-sensitive nature of hospital discharge processes. OBJECTIVE: To describe the mobility factors that Nigerian physiotherapists prioritize to be assessed during hospital-to-home transition of older adults and explore the differences in the prioritization of mobility factors across the physiotherapists' demographics and practice variables. METHODS: This cross-sectional study included 121 physiotherapists who completed an online questionnaire, ranking 74 mobility factors using a nine-point Likert scale. A factor was prioritized if ≥ 70% of physiotherapists rated the factor as "Critical" (scores ≥7) and ≤ 15% of physiotherapists rated a factor as "Not Important" (scores ≤3). We assessed the differences in the prioritization of mobility factors across the physiotherapists' demographics/practice variables using Mann Whitney U and Kruskal-Wallis tests. FINDINGS: Forty-three of 74 factors were prioritized: four cognitive, two environmental, one financial, four personal, eighteen physical, seven psychological, and seven social factors. Males and those with self-reported expertise in each mobility determinants more frequently rated factors as critical. CONCLUSION: Prioritizing many mobility factors underscores the complex nature of mobility, suggesting that an interdisciplinary approach to addressing these factors may enhance post-hospital discharge mobility outcomes.

Hospital Discharge Process: Context-Sensitive Care.

The transition from hospital to home after surgery is a vulnerable time for all cardiac surgical patients, particularly older adults. This postoperative phase presents multiple physical, physiological, emotional, and socioeconomic challenges, not only for patients but also for their families and informal caregivers, who often describe this period as stressful and overwhelming. Health-care professionals, particularly nurses, play an integral role in a patient's discharge process; the challenges can be ameliorated through timely discharge planning and effective discharge education. The context-sensitive solutions shared in this paper propose enhancing nurses' discharge practices to provide individualized care and to facilitate the hospital-to-home transition.

Barriers and Facilitators of a Community-Based, Slow-Stream Rehabilitation, Hospital-to-Home Transition Program for Older Adults: Perspectives of a Multidisciplinary Care Team.

The purpose of this study was to examine the perspectives of support staff, health care professionals, and care coordinators working in or referring to a community-based, slow-stream rehabilitation, hospital-to-home transition program regarding gaps in services, and barriers and facilitators related to implementation and functioning of the program. This was a qualitative descriptive study. Recruitment was conducted through purposive sampling, and 23 individuals participated in a focus groups or individual semi-structured interview. Transcripts were analyzed by six researchers using inductive thematic analysis. Themes that emerged were organized based on a socio-ecological framework. Themes were categorized as: (1) macro level, meaning gaps while waiting for program, limited program capacity, and gaps in service post-program completion; (2) meso level, meaning lack of knowledge and awareness of the program, lack of specific referral process and procedures, lack of specific eligibility criteria, and need for enhanced communication among care settings; or (3) micro level, meaning services provided, program participant benefits, person-centred communication, program structure constraints, need for use of outcome measures, and follow-up or lack of follow-up. Implementation of seamless patient information sharing, documentation, use of specific referral criteria, and use of standardized outcome measures may reduce the number of unsuitable referrals and provide useful information for referral and program staff.

Evaluation of the impact of a pharmacy transitions of care program.

PURPOSE: Pharmacist-driven transitions of care interventions have been shown to improve patient clinical outcomes. However, the evidence in the literature on the impact of pharmacy transitions of care services on hospitalization and emergency department visit rates is inconclusive. The purpose of this study is to determine the impact of a pharmacist-driven transitions of care program on hospitalization and emergency department visit rates at an academic medical center. METHODS: This retrospective observational cohort study was conducted via pre- and postintervention analyses. The data collection period included 30 days before the date of pharmacist intervention and 30 days after the date of intervention. The study evaluated patients who were enrolled in the Transitional Inpatient Rounding Experience (TIRE) program at Wake Forest Baptist Health between August 2017 and September 2020. Patients excluded were less than 18 years old, in hospice care, discharged to long-term care, or did not have a hospitalization within 90 days of intervention. The Wilcoxon signed rank test was utilized to analyze continuous data. Standard descriptive statistics were used for categorical data. RESULTS: One hundred patients met the inclusion criteria for this study. For the primary outcome, the TIRE intervention resulted in a reduction of 31 hospitalizations, or 50% (62 prior hospitalizations in the 30 days before the intervention vs 31 admissions in the 30 days after the intervention; P < 0.001). There were significant reductions in the secondary outcomes of 90-day hospitalizations (24% fewer with intervention; P = 0.028) and 30-day emergency department visits (65% fewer with intervention; P =0.006). For the outcome of 90-day emergency department visits, there was a 36% reduction (P = 0.240). CONCLUSION: The results of the study demonstrate that a pharmacy transitions of care program may lead to a reduction in hospitalization and emergency department visit rates. The study also found potential cost savings associated with a pharmacy transitions of care program.

Usability of a digital health platform to support home hospitalization in heart failure patients: a multicentre feasibility study among healthcare professionals.

AIMS: Heart failure (HF) is a common cause of mortality and (re)hospitalizations. The NWE-Chance project explored the feasibility of providing hospitalizations at home (HH) supported by a newly developed digital health platform. The aim of this study was to explore the perceived usability by healthcare professionals (HCPs) of a digital platform in addition to HH for HF patients. METHODS AND RESULTS: A prospective, international, multicentre, single-arm interventional study was conducted. Sixty-three patients and 22 HCPs participated. The HH consisted of daily home visits by the nurse and use of the platform, consisting of a portable blood pressure device, weight scale, pulse oximeter, a wearable chest patch to measure vital signs (heart rate, respiratory rate, activity level, and posture), and an eCoach for the patient. Primary outcome was usability of the platform measured by the System Usability Scale halfway and at the end of the study. Overall usability was rated as sufficient (mean score 72.1 ± 8.9) and did not differ between the measurements moments (P = 0.690). The HCPs reported positive experiences (n = 7), negative experiences (n = 13), and recommendations (n = 6) for the future. Actual use of the platform was 79% of the HH days. CONCLUSION: A digital health platform to support HH was considered usable by HCPs, although actual use of the platform was limited. Therefore, several improvements in the integration of the digital platform into clinical workflows and in defining the precise role of the digital platform and its use are needed to add value before full implementation. REGISTRATION: clinicaltrials.gov NCT04084964.

Unmasking the hidden aftermath: postintensive care unit sequelae, discharge preparedness, and long-term follow-up / Desmascarando as consequências ocultas: sequelas pós-unidade de terapia intensiva, planejamento da alta e acompanhamento a longo prazo

ABSTRACT A significant portion of individuals who have experienced critical illness encounter new or exacerbated impairments in their physical, cognitive, or mental health, commonly referred to as postintensive care syndrome. Moreover, those who survive critical illness often face an increased risk of adverse consequences, including infections, major cardiovascular events, readmissions, and elevated mortality rates, during the months following hospitalization. These findings emphasize the critical necessity for effective prevention and management of long-term health deterioration in the critical care environment. Although conclusive evidence from well-designed randomized clinical trials is somewhat limited, potential interventions include strategies such as limiting sedation, early mobilization, maintaining family presence during the intensive care unit stay, implementing multicomponent transition programs (from intensive care unit to ward and from hospital to home), and offering specialized posthospital discharge follow-up. This review seeks to provide a concise summary of recent medical literature concerning long-term outcomes following critical illness and highlight potential approaches for preventing and addressing health decline in critical care survivors.

RESUMO Parcela significativa de indivíduos que enfrentaram doença crítica sofre de síndrome pós-cuidados intensivos, caracterizada por comprometimento novo ou exacerbado da função física, cognitiva ou de saúde mental. Além disso, os sobreviventes geralmente apresentam maior risco de consequências adversas, como infecção, eventos cardiovasculares maiores, reinternação e taxas de mortalidade elevadas, durante os meses após a hospitalização. Esses achados reforçam a necessidade urgente de prevenção e manejo eficazes da deterioração da saúde a longo prazo no ambiente de cuidados intensivos. Embora haja poucas evidências conclusivas de ensaios clínicos randomizados bem desenhados, potenciais intervenções incluem estratégias como limitação da sedação, mobilização precoce, presença da família durante a internação na unidade de terapia intensiva, implementação de programas de transição multidisciplinares (da unidade de terapia intensiva para a enfermaria e do hospital para o domicílio) e acompanhamento especializado após a alta hospitalar. Esta revisão objetiva fornecer um resumo conciso da literatura médica recente sobre os desfechos a longo prazo após doenças críticas e destacar potenciais abordagens para prevenir e abordar a deterioração da saúde de sobreviventes de cuidados intensivos.

Delineating family needs in the transition from hospital to home for children with medical complexity: part 1, a meta-aggregation of qualitative studies.

BACKGROUND: Advances in diagnostic and therapeutic interventions for rare diseases result in greater survival rates, with on the flipside an expanding group of children with medical complexity (CMC). When CMC leave the protective hospital environment to be cared for at home, their parents face many challenges as they take on a new role, that of caregiver rather than care-recipient. However, an overview of needs and experiences of parents of CMC during transition from hospital-to-home (H2H) is lacking, which hampers the creation of a tailored H2H care pathway. Here we address this unmet medical need by performing a literature review to systematically identify, assess and synthesize all existing qualitative evidence on H2H transition needs of CMC parents. METHODS: An extensive search in Medline, PsychINFO and CINAHL (up to September 2022); selection was performed to include all qualitative studies describing parental needs and experiences during H2H transition of CMC. All papers were assessed by two independent investigators for methodological quality before data (study findings) were extracted and pooled. A meta-aggregation method categorized the study findings into categories and formulated overarching synthesized findings, which were assigned a level of confidence, following the ConQual approach. RESULTS: The search yielded 1880 papers of which 25 met eligible criteria. A total of 402 study findings were extracted from the included studies and subsequently aggregated into 50 categories and 9 synthesized findings: (1) parental empowerment: shifting from care recipient to caregiver (2) coordination of care (3) communication and information (4) training skills (5) preparation for discharge (6) access to resources and support system (7) emotional experiences: fatigue, fear, isolation and guilt (8) parent-professional relationship (9) changing perspective: finding new routines and practices. The overall ConQual Score was low for 7 synthesized findings and very low for 2 synthesized findings. CONCLUSIONS: Despite the variability in CMC symptoms and underlying (rare disease) diagnoses, overarching themes in parental needs during H2H transition emerged. We will augment this new knowledge with an interview study in the Dutch setting to ultimately translate into an evidence-based tailored care pathway for implementation by our interdisciplinary team in the newly established 'Jeroen Pit Huis', an innovative care unit which aims for a safe and sustainable H2H transition for CMC and their families.

Delineating family needs in the transition from hospital to home for children with medical complexity: part 2, a phenomenological study.

BACKGROUND: A systematic literature review on the transition from hospital-to-home (H2H) of families with a child with medical complexity (CMC), resulted in nine overarching themes. These demonstrated common needs and experiences despite the widely differing CMC diagnoses and family characteristics. However, none of the reported studies was conducted in the Netherlands, which hampers the creation of a tailored H2H care pathway, deemed essential for our recently established Transitional Care Unit in the Netherlands: the 'Jeroen Pit Huis'. Therefore, the aim of this study was to gain a deeper understanding of the needs and experiences of Dutch CMC parents on H2H transition and integrate these insights with the literature review into an evidence-based H2H care pathway for CMC and their families. METHODS: A descriptive phenomenological approach was applied. Heterogeneous purposeful sampling methods were used to recruit participants according to the following criteria: parents of CMC from various regions in the Netherlands, who spoke Dutch fluently and who had been discharged home from a tertiary hospital within the previous five years. Semi-structured, open-ended interviews were conducted via video call by two researchers, who transcribed the audio recordings verbatim. Thematic analysis methods were used to identify emerging themes from the individual transcripts, involving a third and fourth researcher to reach consensus. RESULTS: Between March and August 2021, 14 mothers and 7 fathers participated in 14 interviews. They elaborated on the H2H transition of 14 CMC with a wide range of underlying diseases: 7 male, 7 female, aged 6 months to 10 years. Eight overarching themes, consistent with the results of the systematic review, represent CMC parental needs and experiences during the H2H process in the Netherlands: (1) autonomy, (2) division of tasks and roles, (3) family emotions, (4) impact on family life, (5) communication, (6) coordination of care, (7) support system and (8) adaptation. CONCLUSIONS: The H2H needs and experiences reported by the CMC families in this study align with the results of our systematic review. The H2H transition process is not linear but continuous, and should extend beyond the specific medical needs of the CMC to holistic care for the family as a whole. The overarching care needs and experiences, expressed by all CMC families, regardless of underlying symptoms and diagnoses, inform the H2H care pathway and its future evaluation. Our studies highlight the necessity to focus on the family needs rather than on the specific illness of the child, as well as the value of our interdisciplinary care team partnering with parents in the 'Jeroen Pit Huis' towards a safe and sustainable transition home.