Transition Home Research Articles

Safe transition home after transcatheter aortic valve implantation feasibility (START-F) study: Very early self-reported function and recovery status after early discharge

Abstract Background Despite significant excellent outcomes and significant improvements in rapid recovery protocols and early discharge, rates of 30-day readmission after transcatheter aortic valve implantation (TAVI) remain stubbornly high. There can be numerous drivers for readmission in older people with valvular heart disease; the time of transition home is the period of greatest risk when patients are most vulnerable to repeat hospitalization. We sought to assess patients’ early recovery (< post-procedure day 3) to inform the evaluation of a nurse-led telephone intervention to mitigate the risks of 30-day readmission after early (1 day) discharge TAVI. Methods We conducted a prospective observational cohort feasibility study in five Canadian TAVI programs to ascertain acceptability, compliance, delivery of the intervention, recruitment and retention. In this preliminary report, we assessed key indicators of patients’ status at the time of discharge and functional status in their early recovery. Results We recruited 188 participants, mean age 81.6 years (SD=7.0), 41.5% women with baseline mean KKCQ 53.4 (SD=20.1). Patients were admitted on the day of the procedure, and underwent TAVI with a balloon-expandable (n=146, 77.6%) or self-expanding (n=30, 16.0%) device, with local anaesthesia +/- light sedation (n=171, 90.1%) or general anaesthesia (n=17, 9.0%). There was 1 in-hospital death (0.5%) and 182 (97.4%) were discharged home. At the time of the 3-day telephone follow-up, 168 (95.5%) reported that an individual had stayed with them during the first 24 hours [spouse: 85 (48.9%); friend: 77 (44.3%)], and 165 (93.3%; missing: 11) were able to complete all activities of daily living, including cooking their own meals (n=80, 45.5%). Self-reported energy was low/very low for 49 participants (26.1%), moderate for 93 (52.8%), and high/very high for 34 (18.1%), with 104 (55.3%) describing feeling somewhat or quite a bit better than before TAVI, and 24 (12.8%) somewhat or quite a bit worse. Bruising was present in 120 participants (68.6%) and 137 (78.8%) had removed their bandage as instructed. 18 participants were readmitted within 30 days, including 14 cardiac-related events. Conclusion This is one of the first reports of TAVI patients’ self-reported function following next-day discharge, providing novel evidence that most patients describe safe self-care and very early improved functional status. Research is needed to identify and support patients who are at higher risk of poorer trajectories of recovery and readmission, and report the feasibility of a nurse-led intervention to mitigate these risks.

Transitional Care Program in Reducing Acute Hospital Utilization in Singapore

(1) Background: The evidence to support transitional care in reducing acute hospital utilization is variable. Despite changes in the healthcare landscape with a rapidly aging population, there is a lack of local and regional studies to evaluate the effectiveness of transitional home care programs. This study investigates whether a transitional home care program delivered by an acute tertiary hospital can reduce acute hospital utilization. (2) Methods: A pre-post design was used to evaluate the effectiveness of the program. A total of 2004 enrolments from 1679 unique patients that fulfilled the criteria of enrolment were included. The transitional care program is delivered through telephone follow-up and home visits. The Wilcoxon Signed-Rank Test was used to assess the differences between the three periods of baseline, enrolment, and post-enrolment. (3) Results: All 2004 enrolments were analyzed. The re-attendances at the emergency department reduced significantly by 31.2% and 71.9% during enrolment and post-enrolment (p < 0.001), respectively. Similarly, patients had a 38.7% and 76.2% reduction in hospital admissions during enrolment and post-enrolment (p < 0.001), respectively. For patients who were admitted, there was no significant difference in the length of stay between these groups (p = 0.23). (4) Conclusions: The transitional home care program can effectively reduce emergency department re-attendances and inpatient admissions. Not only was the total number of emergency department re-attendances reduced significantly, but the number of frequent re-attendances also dropped significantly. The outcomes were consistent during COVID-19 and post-pandemic phases. These findings can be used as a guide in program planning and future scalability.

Experiences And Preferences Of People With Stroke And Caregivers, Around Supports Provided At The Transition from Hospital to Home

Abstract Background Transitioning home from organised stroke services poses many challenges for people with stroke (PWS) and their caregivers (CGs), requiring them to navigate through complex uncertainties. There are gaps in our understanding of appropriate support interventions for managing the transition home. In this qualitative study, we explored the perspectives of PWS and their CGs regarding their support experiences and preferences during this period. Methods Between November 2022 and March 2023, and within six months of hospital discharge, audio-recorded, semi-structured interviews were conducted with PWS and their CGs. All interviews were transcribed, imported into NVivo software, and analysed using reflexive thematic analysis. Results Sixteen interviews were conducted, nine with PWS and seven with CGs. Four themes relevant to their collective experiences and preferences were identified: (i) Need for tailored information-sharing, at the right time, and in the right setting; (ii) The importance of emotional support; (iii) Left in limbo, (iv) Inequity of access. Experiences depict issues such as insufficient information-sharing, communication gaps, and fragmented and inequitable care; while a multi-faceted approach is desired to ease anxiety and uncertainty, minimise delays, and optimise recovery and participation during transition. Conclusion Our findings highlight that regardless of the discharge route, and even with formal support systems in place, PWS and families encounter challenges during the transition period. There is a need for more personalised and timely information-sharing to support individuals and caregivers effectively. A multi-faceted approach is recommended to alleviate anxiety, reduce delays, and provide equitable care for all involved.

From Hospital to Home: Applying a Co-design Approach to Determine Key Components of an Intervention to Support Transition-to-Home After Stroke

Abstract Background When people with stroke transition from the hospital back to their homes, they and their families frequently experience multi-faceted unmet needs and feelings of abandonment. Uncertainty surrounds the fundamental components of an intervention intended to support transition-to-home after a stroke. The aim of this study was to utilise a co-design process to identify key components for a patient-centred support intervention facilitating the transition home after stroke, and to explore what might be feasible within a real-world context. Methods The primary researcher, a larger team of researchers, and an individual with lived experience of stroke facilitated a series of three workshops for 12 people with stroke, 6 caregivers, 26 healthcare professionals, and 6 representatives from stroke organisations. World Café methodology and Liberating Structures facilitation techniques were adapted to meet the study aim. Data collection involved making observations during workshops, summarising findings, and reaching group consensus agreement on outputs. The final output was the consequence of facilitated consensus on a prioritisation task. Individuals with lived experience of stroke contributed to study design, ethics, and co-design outputs, providing input for future research and co-facilitating workshops with the research team. Results The co-design group identified 10 key intervention components to support people with stroke and their families during the transition from hospital-to-home. These components focussed on enhancing collaboration, streamlining transition processes, and facilitating post-discharge support. While a stroke coordinator was considered a top priority, increased cross-setting information sharing and community-based healthcare staff in-reach, were considered most feasible to implement. Conclusion The co-design approach, involving a multi-stakeholder group, was strengthened by patient and public involvement. This ensured that the identified transition-to-home intervention components are meaningful and relevant for people with stroke and their families. To further refine, and feasibility test the components for generalisability within the wider Irish healthcare context, additional co-design workshops are required.

The Lived Experience of Caregivers in the Older Stroke Survivors' Care Pathway during the Transitional Home Program-A Qualitative Study.

stroke is a major cause of disability and death, globally. Many stroke survivors live with disabilities, requiring significant caregiving support. Caregivers often feel unprepared and burdened, experiencing isolation and health declines. Their well-being and involvement in discharge planning impact post-discharge care quality. to investigate the experiences of caregivers of older stroke survivors regarding their expectations in the care pathway during the transitional home program, as this phenomenon is currently understudied in the present context. by employing a qualitative design, this study utilized a phenomenological approach developed by Cohen. Eighteen caregivers of stroke survivors participated. four main themes emerged from the analysis: (1) the sense of loss experienced by stroke survivors and perceived by caregivers; (2) the importance of social support in the recovery and well-being of both stroke survivors and caregivers; (3) the increased workload of caregivers; and (4) the lack of awareness of the needs during the transition, leading to resignation when facing complications. the findings highlight the significant impact of stroke on caregivers, affecting both the individual characteristics and social relationships of stroke survivors and their caregivers. There is a need for a nuanced understanding of caregivers' roles and responsibilities.

Former Primary Caregivers of Patients With Glioblastoma Multiforme Evaluate the PATH (Preparedness Assessment for the Transition Home) Instrument.

To evaluate whether Preparedness Assessment for the Transition Home (PATH), a validated instrument assessing gaps in caregiver commitment and capacity to care for a patient with a disabling condition, would be helpful to identify gaps in preparing primary caregivers of patients with glioblastoma multiforme (GBM). A descriptive survey design with quantitative and qualitative data. Former primary caregivers of patients with GBM were invited to complete a 17-question online survey during February and March 2023. Former caregivers, each having completed their caregiver journeys, are able to offer a unique perspective across the illness trajectory. Participants reviewed a copy of the PATH instrument and (a) responded to questions rating PATH helpfulness at each stage of the illness trajectory and (b) provided open-ended feedback on the instrument. One hundred seventeen of the 124 participants reported the PATH instrument would be helpful across all stages of the illness trajectory. While there were no statistically significant differences across the illness phases, response trends indicated using the PATH instrument earlier in the illness trajectory would have been more helpful to them as caregivers. Qualitative thematic analysis feedback indicated the most significant gap caregivers faced was education on the effects of the illness and treatment. It is vitally important to prepare and support caregivers. A validated instrument can identify unmet needs and inform care decisions. Patient discharge plans should be guided by the needs and preferences of patients and caregivers. Identifying gaps in education and preparedness early in the illness trajectory may inform the care team of unmet needs, allowing them to tailor resources and support to improve outcomes for patients with GBM and their caregivers. Patient discharge plans should be guided by the needs and preferences of patients and caregivers. Identifying gaps in education and preparedness early in the illness trajectory may inform the care team of unmet needs, allowing them to tailor resources and support to improve outcomes for patients with GBM and their caregivers. PATH has the potential to inform healthcare professionals to develop customised care plans including education, resources and support for caregivers and patients with life-threatening illness. Study adheres to the STROBE reporting method. Prior to deploying the survey to study participants, in addition to testing by study collaborators (authors), the survey was tested and feedback was received from graduate students and from administrators of the private Facebook group where the survey was promoted to study participants.

Transitional Home in Perspective: A Critical Overview of Burial Practices and Grave Construction among the Hausa of Northern Nigeria

Throughout history, the Hausa people of Northern Nigeria have viewed death as a transition from one form of existence to another. This belief underscores the importance of constructing elaborate structures to house their dead, providing for their needs during their 'everlasting sleep,' which is believed to last for centuries or even millennia. The deceased were often interred with various goods, signifying their social status within the community. The advent of Islam introduced clear and uniform guidelines for the disposal of the dead and other funeral practices. However, significant personalities in society continue to have their 'transitional homes' elaborately built. These 'transitional homes' are well-maintained, featuring plants and trees, and receiving regular upkeep. They are considered an integral part of the human community. This paper examines the belief system, funeral practices, and grave construction among the Hausa people to understand how these elements influence the conception of a 'transitional home' for the dead. The study draws on extensive literature reviews, observations, and discussions with cemetery custodians. This approach aims to illuminate the notion that transitional homes are seen as part of the human community, necessitating construction, frequent visits, protection, and care.

Parent Emotions Regarding the Neonatal Intensive Care Unit Experience & Transition Home

Abstract Date Presented 03/21/24 Emotions around the neonatal intensive care unit (NICU) experience and transition home were explored. Fear was expressed equally for NICU and home, and happiness was discussed twice as often for home experiences. Professionals need to consider parent emotions during this period. Primary Author and Speaker: Audrey Kane Contributing Authors: Christine M. Spence, Corri Stuyvenberg, Rachel Gaston, Jennifer Burnsed, Karen D. Hendricks-Muñoz, Richard D. Stevenson, Stacey Dusing

Experiences and preferences of people with stroke and caregivers, around supports provided at the transition from hospital to home: a qualitative descriptive study

BackgroundTransitioning home from the structured hospital setting poses challenges for people with stroke (PWS) and their caregivers (CGs), as they navigate through complex uncertainties. There are gaps in our understanding of appropriate support interventions for managing the transition home. In this qualitative study, we explored the perspectives of PWS and their CGs regarding their support experiences and preferences during this period.MethodsBetween November 2022 and March 2023, and within six months of hospital discharge, audio-recorded, semi-structured interviews were conducted with PWS and CGs. All interviews were transcribed, imported into NVivo software, and analysed using reflexive thematic analysis.ResultsSixteen interviews were conducted, nine with PWS and seven with CGs. Four themes relevant to their collective experiences and preferences were identified: (i) Need for tailored information-sharing, at the right time, and in the right setting; (ii) The importance of emotional support; (iii) Left in limbo, (iv) Inequity of access. Experiences depict issues such as insufficient information-sharing, communication gaps, and fragmented and inequitable care; while a multi-faceted approach is desired to ease anxiety and uncertainty, minimise delays, and optimise recovery and participation during transition.ConclusionsOur findings highlight that regardless of the discharge route, and even with formal support systems in place, PWS and families encounter challenges during the transition period. The experiences of support at this transition and the preferences of PWS and CGs during this important period highlights the need for better care co-ordination, early and ongoing emotional support, and equitable access to tailored services and support. Experiences are likely to be improved by implementing a partnership approach with improved collaboration, including joint goal-setting, between PWS, CGs, healthcare professionals and support organisations.

Paramedic-Assisted Community Evaluation After Discharge: The PACED Intervention

ObjectivesEarly rehospitalization of frail older adults after hospital discharge is harmful to patients and challenging to hospitals. Mobile integrated health (MIH) programs may be an effective solution for delivering community-based transitional care. The objective of this study was to assess the feasibility and implementation of an MIH transitional care program. DesignPilot clinical trial of a transitional home visit conducted by MIH paramedics within 72 hours of hospital discharge. Setting and ParticipantsPatients aged ≥65 years discharged from an urban hospital with a system-adapted eFrailty index ≥0.24 were eligible to participate. MethodsParticipants were enrolled after hospital discharge. Demographic and clinical information were recorded at enrollment and 30 days after discharge from the electronic health record. Data from a comparison group of patients excluded from enrollment due to geographical location was also abstracted. Primary outcomes were intervention feasibility and implementation, which were reported descriptively. Exploratory clinical outcomes included emergency department (ED) visits and rehospitalization within 30 days. Categorical and continuous group comparisons were conducted using χ2 tests and Kruskal-Wallis testing. Binomial regression was used for comparative outcomes. ResultsOne hundred of 134 eligible individuals (74.6%) were enrolled (median age 81, 64% female). Forty-seven participants were included in the control group (median age 80, 55.2% female). The complete protocol was performed in 92 (92.0%) visits. Paramedics identified acute clinical problems in 23 (23.0%) visits, requested additional services for participants during 34 (34.0%) encounters, and detected medication errors during 34 (34.0%). The risk of 30-day rehospitalization was lower in the Paramedic-Assisted Community Evaluation after Discharge (PACED) group compared with the control (RR, 0.40; CI, 0.19–0.84; P = .03); there was a trend toward decreased risk of 30-day ED visits (RR, 0.61; CI, 0.37–1.37; P = .23). Conclusions and ImplicationsThis pilot study of an MIH transition care program was feasible with high protocol fidelity. It yields preliminary evidence demonstrating a decreased risk of rehospitalization in frail older adults.

Challenges in the Transition from Acute Hospital Care to Home for Spanish-Speaking Latino Patients with TBI and Families: Perspectives of Healthcare Providers and Interpreters.

Language-based disparities negatively impact patient outcomes. Spanish-speaking Latino patients with traumatic brain injury (TBI) transitioning home from acute hospital care and their families have poor TBI-related outcomes; further, they have significant difficulties navigating the healthcare system due to care fragmentation and limited provider support. These challenges are exacerbated by language barriers. There are disproportionately fewer bilingual providers and interpreters in the U.S. healthcare system for patients with TBI for whom English is not their primary language. Although Spanish-speaking Latino patients with TBI and their families communicate with healthcare providers using interpreters on a regular basis, limited research has explored the healthcare delivery perspective. The purpose of this study was to understand the perspectives of healthcare providers and interpreters regarding their experience caring for or supporting Spanish-speaking Latino patients with TBI and their families during the transition home from acute hospital care. This qualitative descriptive study included 10 bilingual (English and Spanish-speaking) participants: 7 interdisciplinary providers and 3 interpreters; findings were analyzed using rapid qualitative analysis to inform intervention adaptation. Four themes were identified: 1) language misalignment decreases health literacy and increases length of stay; 2) TBI-related cognitive impairments, coupled with language differences, make communication challenging; 3) unique social contributors to health directly decrease health equity; and 4) recommendations to improve access and justice in transitional care. There are multiple opportunities to improve transitional care support provided to Spanish-speaking Latino patients with TBI and their families in a manner that is not currently being addressed in research or in practice.

Transition from the neonatal unit to home: Parents' educational needs to promote their psychological well-being and sleep quality

PurposeParents may experience altered psychological well-being and sleep following the discharge of their preterm infant. They also perceive a lack of information from healthcare professionals. This study aims to describe the educational needs of parents regarding their psychological well-being and their sleep quality following their infant's discharge from the neonatal unit. Design and methodsThis descriptive quantitative study uses an online survey to assess parental information needs. Multiple parents (n = 87) completed the survey. Descriptive statistics were conducted to report the results of the survey. ResultsAccording to parents, the most helpful information given by health professionals to reduce the stress felt during this period concerned the follow-up of the infant after hospitalization and access to a health professional in case of questions (n = 12; 31.6%). Few parents (n = 17; 19.5%) reported seeing a health professional about their sleep in the past six months. According to 54.8% of parents, none of the information received by health professionals when preparing for their infant's transition home helped improve their sleep quality. ConclusionAfter discharge, parents have several information needs that may impact their psychological well-being and the quality of their sleep. Practice implicationsHealthcare professionals must address these informational needs before and after discharge from the neonatal unit to enhance the experience of parents during the transition of their preterm infant in the family environment.

Turkish cross-cultural adaptation of Pediatric Transition Experience Measure

Introduction and aim. The period immediately after leaving the hospital is known as the transition home, which presents a critical time for parents to take on all the responsibilities and care of a child without the support of the hospital environment. The purpose of this study is to culturally adapt the Pediatric Transition Experience Measure (P-TEM) instrument into Turkish and test its validity and reliability. Material and methods. We conducted this methodological study with parents of children who were discharged from the hospital between May 2021 and May 2022. We evaluated linguistic, content, construct, convergent validity, and internal consistency. Results. The P-TEM exhibited a two-factor structure and accounted for 65% of the overall variability. The internal consistency reliability for the transition preparation and transition support subdimensions was 0.779 and 0.793, respectively, while the total measure had a reliability of 0.831. The item-total correlations for the P-TEM ranged from 0.493 to 0.671. Parents who received the highest P-TEM scores experienced a 5.1-point improvement (95% confidence interval: 1.7 to 8.6) in their satisfaction with healthcare services, which was greater than that of parents who reported lower P-TEM scores. Conclusion. It is worth noting that the P-TEM has been validated and has high reliability in Türkiye.

Addressing food insecurity in the inpatient setting: Results of a postdischarge pilot study.

With a growing interest in screening for food insecurity (FI) during pediatric hospitalization, there is a parallel need to develop interventions. With input from caregivers experiencing FI, we sought to identify interventions to assist with short-term FI after discharge and evaluate their feasibility, acceptability, and appropriateness. We first employed qualitative methods to identify potential interventions. Next, we conducted a pilot study of selected interventions for families experiencing FI. Seven days postdischarge, caregivers rated the intervention's feasibility, acceptability, and appropriateness. We also assessed for ongoing FI. We summarized the median and proportion of "completely agree" responses to feasibility, acceptability, and appropriateness questions, and we compared in-hospital and postdischarge FI using McNemar's test. In the qualitative stage, 14 caregivers prioritized three interventions: grocery store gift cards, grocery delivery/pick-up, and frozen meals. In the pilot study, 53 caregivers (25% of those screened) endorsed FI during their child's hospitalization and received one or more of the interventions. Every caregiver selected the grocery gift card option; 37 families (69.8%) also received frozen meals. Seven days after discharge, most caregivers rated the intervention as "completely" feasible (76%), acceptable (90%), and appropriate (88%). There was a significant decrease in caregivers who reported FI after discharge compared to during the hospitalization (p < .001). This study demonstrates the feasibility, acceptability, and appropriateness of inpatient interventions to address FI, particularly at the time of pediatric hospital discharge and transition home. Randomized trials are needed to further evaluate the efficacy of interventions employed during hospitalization.

Family caregivers of children transitioning hospital to home receiving nasogastric feeding: descriptive qualitative study.

Nasogastric tube (NGT) feeding is used for children unable to tolerate adequate nutrition orally to sustain growth and development. This vulnerable population is at risk of gaps in care because they often lack a medical home due to the transitional nature of the technology. This study explores perspectives and challenges of family caregivers (FCs) of children requiring NGTs transitioning from hospital to home. Semi-structured qualitative interviews were conducted with FCs at the Hospital for Sick Children and Children's Hospital of Eastern Ontario. Research ethics approval was obtained (SK REB# 1000064641, CHEO REB# 19/133X). Written informed consent was obtained. Thirteen interviews revealed FCs feeling overwhelmed and uncomfortable with first communication of the NGT but learned to manage NGTs with training and virtual care support over time. Initial transition home was described as challenging due to physical, emotional, and financial strain associated with constant management of NGTs. Our study describes the importance of emotional support and additional time for decision making during initial communication to FCs of their child's NGT need, and access to specialized healthcare professionals after transitioning home. Future programs should focus on personalized education and psychosocial support for FCs of children with NGTs at home. This study delves into the challenges faced by family caregivers (FCs) of children requiring nasogastric tube (NGT) feeding when returning home from the hospital. There is a pressing need for more time for FC decision-making and emotional support during the initial communication of the need for an NGT for their child. In addition, FCs require ongoing 24/7 support including access to healthcare professionals specialized in NGT care after the initial transition home. The study highlights the need for personalized education and psychosocial supports for FCs of children with NGTs to improve their experiences at home.

Kids+ Parent Infant Program (PIP): a community model for supporting partnerships in early developmental follow-up and support.

High-risk infants are discharged home from hospital with increased care needs and the potential for the emergence of developmental disabilities, contributing to high levels of parental stress and anxiety. To enable optimal outcomes for high-risk infants and their families, developmental follow-up programs need to continue following hospital discharge. However, current follow-up care for high-risk infants is variable in terms of type, access and equity, and there seems to be a gap in existing services such as supporting the transition home, parental support, and inclusion of all at-risk infants regardless of causality. Routine follow-up that identifies developmental delays or neuromotor concerns can facilitate timely referral and access to targeted intervention during critical periods of development. The Kids+ Parent Infant Program (PIP) is a unique model of developmental follow-up that shares some characteristics with established programs, but also includes additional key elements for a seamless, wrap-around service for all high-risk infants and their families living in a regional area of Australia. This community-based program provides integrated assessment and intervention of infants, alongside parent support and education, embracing a holistic model that accounts for the complexity and interrelatedness of infant, parent, medical and developmental factors. By prioritising the well-being of high-risk infants and their families, the Kids+ PIP paves the way for improved developmental outcomes and provides an innovative model for developmental follow-up, with the potential for reproduction in other healthcare settings.

Abstract B040: Former caregivers of patients with glioblastoma multiforme report the Preparedness Assessment for the Transition Home (PATH©) instrument is helpful throughout the disease trajectory

Abstract Purpose: The purpose of the study was to determine if the Preparedness Assessment for the Transition Home (PATH©), a validated caregiver assessment instrument, would be helpful in identifying gaps in preparation of primary caregivers of patients with glioblastoma multiforme (GBM). The PATH© was designed to assess caregiver readiness to assist the healthcare team in developing tailored solutions to meet the needs of caregiver/patient dyads. Methods: Former primary caregivers (spouses or life-partners) of now deceased patients with GBM who were members of the private Facebook (FB) group “Widows and Widowers of GBM” reviewed the instrument and completed a web-based survey via Qualtrics. Following IRB approval (#H22-0103) and approval from the FB group administrator, a survey link was posted on the FB group page and left open for 3 weeks in Spring 2023. Participants were asked to review the 25 PATH© items and respond to 4 yes/no or Likert scale questions about whether the instrument would have helped to better prepare them for the caregiving role across the phases of GBM disease trajectory (acute, living with disease progression, end-of-life). A free text option was included so caregivers could provide suggestions for tool revision to better address the needs of caregivers of patients with GBM. Summary statistics were calculated for interval and ratio variables. ANOVA and t-test were conducted to determine whether there were differences across stages among the variables (stage of disease trajectory and helpfulness score). Chi-square and Fisher’s exact test were conducted to examine whether helpfulness and overall helpfulness were independent. A linear regression was conducted to assess whether the different phases of the disease trajectory predicted tool helpfulness. The GBM Caregiver Study team met to review, analyze, code free text feedback, and identify and define code themes. Results: Demographics were completed by 191 study participants; 124 reviewed the PATH© instrument and completed the survey. Ninety-two percent of participants reported that the PATH© instrument would be helpful across all stages of the disease trajectory, with the majority selecting “Very” or “Somewhat” helpful. Only 8% of participants did not think the instrument would be helpful at end-of-life, and 6% of participants did not think the instrument would be helpful at other stages of the disease trajectory. Fifty-four participants suggested changes to the existing instrument for GBM caregivers. From these open-ended responses, four themes were identified: education, access to care team and resources, care at the end-of-life/after death, and self-care. Conclusion: Study results indicated using the PATH© instrument in the GBM population would be helpful to assess caregiver preparation. Study collaborators are actively planning future research, building on the findings of this study, to explore the impact of how implementing a systematic caregiver assessment and tailored care plans and/or interventions can improve caregiver readiness and reduce caregiver burden. Citation Format: Elizabeth James, Marlee Wallace, Megan Chard, Barbara Lutz, Laurie Minns. Former caregivers of patients with glioblastoma multiforme report the Preparedness Assessment for the Transition Home (PATH©) instrument is helpful throughout the disease trajectory [abstract]. In: Proceedings of the AACR Special Conference on Brain Cancer; 2023 Oct 19-22; Minneapolis, Minnesota. Philadelphia (PA): AACR; Cancer Res 2024;84(5 Suppl_1):Abstract nr B040.

Antenatal Psychiatric Hospitalization: Factors Associated With Newborns' Custody Under Child Protective Services (CPS)

BackgroundPsychiatric illness during pregnancy is associated with adverse obstetric outcomes, but investigations for its impact on parenting capacity are limited. Child Protective Services (CPS) contact disproportionately impacts families marginalized by poverty, mental health disorders, and substance use disorders. Recently, there have been investigations into the significance of psychiatric illness and non-mental health-related factors that predict CPS custody arrangements. MethodsWe conducted a retrospective review of electronic medical records over a 10-year period (2012-2021) for patients who were pregnant during their inpatient psychiatric hospitalizations. We followed 81 patients (18 to 43 years) who delivered within the hospital. The study endpoint was whether the newborn was placed under CPS custody. For the purposes of this study, psychiatric illness was categorized by the presence or absence of psychotic symptoms. We utilized logistic regressions to investigate the associations of these demographic and clinical factors with the study outcome of CPS custody. ResultsFor the entire study population, 64.2% of newborns had CPS custody arrangements. In multivariate analysis, after adjusting for potential confounders, patients with psychotic symptoms were at increased odds of having CPS custody arrangements (odds ratio [OR]= 8.43; 95% confidence interval [95% CI] 2.16-32.85) compared with patients without psychotic symptoms. Furthermore, multivariate analyses revealed that patients with a history of homelessness also had a higher risk (OR = 6.59; 95% CI: 1.24-35.13) of CPS custody arrangements for their newborns than those without a history of homelessness. DiscussionThe results of this study suggest that among pregnant and psychiatrically hospitalized patients, those with psychotic symptoms are significantly more likely to have CPS custody arrangements compared to those without psychotic symptoms. However, it is important to note that psychotic symptoms were not definitive for the inability to parent appropriately. In fact, nearly 25% of the study population who had psychotic symptoms were able to successfully transition home with their newborns as mothers. This emphasizes the importance of optimizing the management of psychotic symptoms, particularly among those who have children or plan to have children. The findings of this study also highlight the chronic impacts that those who have struggled with homelessness may experience, including parenting capacity after homelessness resolves.

Adaptation of a trauma-informed intervention to prevent opioid use among youth in the legal system

IntroductionYouth in the legal system are at high risk for opioid and other substance use problems and exhibit high rates of trauma exposure. Trauma-focused therapeutic approaches to prevent substance use show promise, but few evidence-based interventions are designed with justice-involved youth in mind. Consequently, implementing trauma-informed, evidence-based interventions within juvenile justice systems is challenging. The current paper describes the systematic adaptation of Trust-Based Relational Intervention (TBRI) as a family-centered substance use prevention program for youth transitioning from secure residential facilities. MethodsThe study utilized the ADAPT-ITT methodological framework to adapt TBRI Caregiver Training, an evidence-based, trauma-informed intervention designed to help caregivers support children and youth with histories of trauma. Phases of adaptation included (1) Assessment, (2) Decision, (3) Prototype Development, and (4) Testing and Integration. The adaptation process explored contextual factors (e.g., systems, facilities, and staff) and the needs of the new target population (i.e., youth in the legal system and their caregivers). Adaptations were made to both content (e.g., terminology and activities) and structure (e.g., session duration and delivery setting) with input from participants from the target population, key stakeholders, and content experts. ResultsThe systematic adaptation of the intervention model resulted in a two-phase, four-component intervention package that can be implemented in juvenile justice settings as part of youth reentry services. The primary intervention, delivered while youth are in residential facilities, includes the TBRI Caregiver Curriculum, TBRI Youth & Young Adult Curriculum, and TBRI Nurture Groups. The secondary intervention, delivered after youth transition home, includes the TBRI Family Coaching Curriculum. ConclusionsUtilizing a systematic methodological framework to guide adaptation has implications for developing accessible, culturally relevant, and contextually appropriate interventions. Accounting for contextual factors and population needs can improve the fit of evidence-based interventions for youth in the legal system, facilitating uptake and ultimately improving outcomes for youth at risk for substance use problems. Trial registrationClinicalTrials.gov Identifier: NCT04678960.

Voluntary discharge and hospital readmission: ethical and legal healthcare implications

The present research addresses the issue of the ethical and legal implications of voluntary discharge and readmission in the hospital area, taking into consideration that a patient's decision to request voluntary discharge from the hospital may have various motivations, such as the desire to continue the home treatment, financial difficulties, or disagreement with clinical management. The objective of this research focuses on analyzing the depth of the ethical, legal and healthcare implications of voluntary discharge and hospital readmission. Among the main results obtained, it is observed that voluntary discharge is a right that must be duly informed, reasoned and documented when exercised by a competent patient. The health team must do everything possible to guarantee a safe transition home, establishing the necessary measures to reduce avoidable risks of unplanned re-entry. Effective communication and solid coordination between levels of care are essential for continuity of care after discharge. There is still much to advance through research into these complex phenomena, to better understand their impact on clinical outcomes and the experience of patients and their families.