Care Planning Research Articles

Fetal Brain MRI Abnormalities in Pyruvate Dehydrogenase Complex Deficiency.

Pyruvate dehydrogenase complex deficiency (PDCD) is a disorder of mitochondrial metabolism that is caused by pathogenic variants in multiple genes, including PDHA1. Typical neonatal brain imaging findings have been described, with a focus on malformative and encephaloclastic features. Fetal brain MRI in PDCD has not been comprehensively described. The aims of this study were (1) to further characterize the fetal brain MRI findings in PDCD using comprehensive fetal imaging and genetic testing and (2) to determine whether markers of diagnosis of PDCD could be identified on prenatal imaging. Fetuses with a diagnosis of PDCD related to a genetic etiology that had undergone fetal MRI were included. Fetuses were identified retrospectively from local databases of 4 fetal diagnostic clinics within tertiary pediatric health care centers. Electronic medical records were reviewed retrospectively: demographics, maternal and pregnancy history, fetal outcomes, and neonatal outcomes (if available) were reviewed and recorded. Fetal and neonatal imaging reports were reviewed; source fetal and neonatal brain MRI scans were reviewed by a single pediatric neuroradiologist (J.W.S.) for consistency. Genetic testing strategies and results including variant type, zygosity, inheritance pattern, and pathogenicity were recorded. Deidentified data were combined and reported descriptively. A total of 10 fetuses with a diagnosis of PDCD were included. 8 fetuses had corpus callosum dysgenesis, 6 had an abnormal gyration pattern, 10 had reduced brain volumes, and 9 had cystic lesions. 1 fetus had intraventricular hemorrhages. 1 fetus had a midbrain malformation with aqueductal stenosis and severe hydrocephalus. 6 fetuses imaged in the second trimester had cystic lesions involving the ganglionic eminences (GEs) while GE cysts were not present in the 4 fetuses imaged in the third trimester. Fetuses with PDCD have similar brain MRI findings to neonates described in the literature, although some of these findings are subtle early in pregnancy. Additional features, such as cystic lesions of the GEs, are noted in the second trimester in fetuses with PDCD. These may represent an early diagnostic marker of PDCD, although more data are needed to validate this association. Early diagnosis of PDCD using fetal MRI may inform genetic counseling, pregnancy decision making, and neonatal care planning.

Missed opportunities to prevent risk of offending in young people with ADHD – a service evaluation from a central London FCAMHS service

ABSTRACT This service evaluation aims to explore the needs of young people (YP) with ADHD engaging in risk behaviours. Demographic, clinical, social, and service involvement data were extracted from records of 443 YP referred to a Forensic Community CAMHS service. A sixth (74, 16.7%) had a diagnosis of ADHD. They had similar CAMHS input (55, 74.3%) compared to those with autism but many more had Youth Offending Team (YOT) involvement (22, 29.7% with ADHD; 5, 6.4% with ASC). A quarter (20, 27.8%) were in mainstream school with a fifth (13, 18.1%) out of education or training (NEET). Half (41, 55.4%) had an Education, Health, and Care Plan (EHCP). The prevalence of ADHD in YP referred and high levels of YOT input suggests missed opportunities to prevent the development of poor outcomes and criminalisation, including those not open to CAMHS and, therefore, unable to access medication, and those out of education without an EHCP.

Differential Effects of an Integrated Community-Based End-Of-Life Support Team (ICEST) Model for Terminally Ill Older Adults on Spousal and Adult-Children Caregivers.

Backgrounds: Family caregivers (FCs) play an essential role in delivering home-based end-of-life care. However, little is known about FCs'' experiences when undertaking this role. The integrated community end-of-life support team (ICEST) is a needs-driven, home-based, family-centered care model in Hong Kong. We evaluated its effects on FCs and compared outcomes for spouses and adult children. Method: A multicenter pre-post-test study was conducted. Eligible participants were primary FCs of terminally ill older adults (age ≥ 60) who had a life expectancy of ≤12months. Baseline (T0) and three-month post-intervention (T1) outcome measures included FCs'' caregiving strain, psychological distress, perceived external support, intimate relationships, and communications regarding care planning. Results: A sample of 628 FCs were enrolled at T0, and 40.0% completed the T1 assessments. The ICEST model was effective in reducing caregiving strain, depression, and worries about patients, whilst there were improvements in agreement about care planning with patients, and perceived external supports. At T0, spouses held more negative perceptions of caregiving and faced fewer adjustment demands than adult children. Compared with spouses, adult children were more intimate with patients. Between T0 and T1, spouses experienced a greater reduction in worries about patients, than adult children. Conclusions: The ICEST model contributed to better outcomes, individually and relationally, for FCs, regardless of relationship type. Spouses and adult children faced different challenges while delivering home-based end-of-life care. Effective interventions should modify the negative perceptions of caregiving in spousal caregivers and enable adult children to deal with multiple tasks and complex expectations.

Perioperative Management of Pediatric Combined Heart and Liver Transplantation: A 17 year single center experience.

An increasing number of centers are undertaking combined heart and liver transplantation in adult and pediatric patients with congenital heart disease. The primary aim of this study was to describe the perioperative management of a single center cohort, identifying challenges and potential solutions. We conducted a retrospective review of all patients undergoing combined heart and liver transplantation at Stanford Children's Hospital from 2006 to 2022. Preoperative information included cardiac diagnosis, hemodynamics, and severity of liver disease. Intraoperative data included length of surgery, cardiopulmonary bypass time, and blood products transfused. Postoperative data included blood products transfused in the intensive care unit, time to extubation, length of intensive care unit stay, survival outcomes and 30-day adverse events. Eighteen patients underwent en bloc combined heart and liver transplantation at Stanford Children's Hospital from 2006 to 2022, and the majority 15 (83%) were transplanted for failing Fontan circulation with Fontan Associated Liver Disease. Median surgical procedure time was 13.4 [11.5, 14.5] h with a cardiopulmonary bypass time of 4.3 [3.9, 5.8] h. Median total blood products transfused in the operating room post cardiopulmonary bypass was 89.4 [63.9, 127.0] mLs/kg. Nine patients (50%) had vasoplegia during cardiopulmonary bypass. Activated prothrombin complex concentrates were used post cardiopulmonary bypass in 15 (83%) patients with a 30-day thromboembolism rate of 22%. Median time to extubation was 4.0 [2.8, 6.5] days, median intensive care unit length of stay 20.0 [7.8, 48.3] days and median hospital length of stay 54.0 [30.5, 68.3] days. Incidence of renal replacement therapy was 11%; however, none required renal replacement therapy by the time of hospital discharge. Neurological events within 30 days were 17% and the 30 day and 1 year survival was 89%. Perioperative challenges include major perioperative bleeding, unstable hemodynamics, and end organ injury including acute kidney injury and neurological events. Successful outcomes for en bloc combined heart and liver transplantation are possible with careful multidisciplinary planning, communication, patient selection, and integrated peri-operative management.

Disposition and Follow-up for Low-Risk Febrile Infants: A Secondary Analysis of a Multicenter Study.

American Academy of Pediatrics guidelines recommend that febrile infants at low risk for invasive bacterial infection be discharged from the emergency department (ED) if primary care provider (PCP) follow-up occurs within 24 hours. We aimed to (1) assess the association between having electronic health record (EHR) documentation of a PCP and ED disposition and (2) describe documentation of potential barriers to discharge and plans for post-discharge follow-up in low-risk febrile infants. We conducted a secondary analysis of a multicenter, cross-sectional study of low-risk febrile infants. Descriptive statistics characterized ED disposition on the basis of the day of the visit, EHR documentation of PCP, scheduled or recommended PCP follow-up, and barriers to discharge. Most infants (3565/4042, 90.5%) had EHR documentation of a PCP. Compared with discharged infants, a similar proportion of hospitalized infants had EHR documentation of PCP (90.3% vs 91.2%, P = .47). Few infants (1.5%) had barriers to discharge documented. Of the 3360 infants (83.1%) discharged from the ED, 1544 (46.0%) had documentation of scheduled or recommended 24-hour PCP follow-up. Discharged infants with weekday visits were more likely than those with weekend visits to have documentation of scheduled or recommended 24-hour follow-up (50.0% vs 35.5%, P < .001). Most infants had a documented PCP, yet fewer than half had documentation of a scheduled or recommended 24-hour follow-up. A dedicated focus on determining post-ED care plans that are safe and patient-centered may improve the quality of care for this population.

Cost Analysis of Routine Histopathologic Evaluation of Specimens Following Total Ankle Arthroplasty.

Routine histopathologic examination of orthopaedic surgical specimens is a standard practice at many institutions. Previous studies have demonstrated that this practice seldom altered patient management for several orthopaedic procedures. As a result, the value of such practices has come into question. The purpose of this study is to determine the cost-effectiveness of routine histopathologic analysis of specimens obtained during total ankle arthroplasty (TAA). A retrospective analysis was performed of patients who underwent uncomplicated primary TAA at a large, academic, health system between January 2015 and December 2021. The postoperative histopathologic diagnoses were compared with the respective patient's preoperative clinical and intraoperative diagnoses. The prevalence of concordant, discrepant, and discordant diagnoses was determined. Cost-effectiveness analysis was conducted to assess the financial implications of obtaining routine specimens for histopathologic examination for TAA. A total of 85 TAAs were identified in 85 individual patients and were included in the present study. A total of 172 specimens were sent for routine histopathologic review. On histopathologic analysis, a final diagnosis was confirmed in 82 (96.5%) of the total specimens reviewed. A discrepant diagnosis was discovered in 3 (3.5%; 2 cases of gout/pseudogout and 1 case of osteonecrosis) cases and 0 (0%) discordant diagnoses were discovered, corresponding to positive and negative predictive values of 97% and 100%, respectively The total estimate of costs incurred for the routine analysis of all specimens included in the study was between $12 299.20 and 17 846.00. The estimated cost to establish each discrepant diagnosis ranged between $4099.73 and $5948.67, and the cost for a discordant diagnosis was unable to be established. Routine histopathologic analysis of specimens obtained during TAA rarely revealed a discordant diagnosis and resulted in no alterations to patients' plan of care. Furthermore, the additional costs of routine histopathologic examination are significant. As such, it is recommended that such interventions in TAA should be performed on a per-case basis at the operating surgeon's discretion.

Collaboration, coordination and communication as facilitators of transitions for patients with advanced cancer: a scoping review linked to the Pal-Cycles project

BackgroundPerson-centred care is becoming increasingly recognised as an important element of palliative care. The current review syntheses evidence in relation to transitions in advanced cancer patients with palliative care needs. The review focuses on specific elements which will inform the Pal-Cycles programme, for patients with advanced cancer transitioning from hospital care to community care. Elements of transitional models for cancer patients may include, identification of palliative care needs, compassionate communication with the patient and family members, collaborative effort to establish a multi-dimensional treatment plan, review and evaluation of the treatment plan and identification of the end of life phase.MethodsA scoping review of four databases (MEDLINE, EMBASE, CINAHL, PsycINFO) was conducted to identify peer-reviewed studies published from January 2013 to October, 2022. A further hand-search of references to locate additional relevant studies was also undertaken. Inclusion criteria involved cancer patients transitions of care with a minimum of two of components from those listed above. Studies were excluded if they were literature reviews, if transition of care was related to cancer survivors, involved non-cancer patients, had paediatric population, if the transition implied a change of therapy and or a lack of physical transit to a non-hospital place of care. This review was guided by Arksey and O’Malley’s framework and narrative synthesis was used.ResultsOut of 5695 records found, 14 records were selected. Transition models identified: increases in palliative care consultations, hospice referrals, reduction in readmission rates and the ability to provide end of life care at home. Transition models highlight emotional and spiritual support for patients and families. No uniform model of transition was apparent, this depends on the healthcare system where it is implemented.ConclusionsThe findings highlight the importance of collaboration, coordination and communication as central mechanisms for transitional model for patients with advanced cancer. This may require careful planning and will need to be tailored to the contexts of each healthcare system.

Acceptance level of advance care planning and its associated factors among the public: A nationwide survey

BackgroundAdvance care planning (ACP) can contribute to individuals making decisions about their healthcare preferences in advance of serious illness. Up to now, the acceptance level and associated factors of ACP among the public in China remain unclear. This study aims to investigate the acceptance level of ACP in China and identify factors associated with it based on the socioecological model.MethodsA total of 19,738 participants were included in this survey. We employed a random forest regression analysis to select factors derived from the socioecological model. Multivariate generalized linear model analysis was then conducted to explore the factors that were associated with the acceptance level of ACP.ResultsOn a scale ranging from 0 to 100, the median score for acceptance level of ACP was 64.00 (IQR: 48.00–83.00) points. The results of the multivariate generalized linear model analysis revealed that participants who scored higher on measures of openness and neuroticism personality traits, as well as those who had greater perceptions of social support, higher levels of health literacy, better neighborly relationships, family health, and family social status, were more likely to accept ACP. Conversely, participants who reported higher levels of subjective well-being and greater family communication levels demonstrated a lower likelihood of accepting ACP.ConclusionsThis study identified multiple factors associated with the acceptance level of ACP. The findings offer valuable insights that can inform the design and implementation of targeted interventions aimed at facilitating a good death and may have significant implications for the formulation of end-of-life care policies and practices in other countries facing similar challenges.

Policy and perspective on outpatient programs for autologous hematopoietic cell transplantation and immune-effector cell therapy administration

High-dose chemotherapy with autologous hematopoietic cell transplantation (AutoHCT) has long been an integral treatment modality for multiple myeloma and non-Hodgkin lymphoma. Over the past 25 years, numerous institutions have shifted this practice from requiring hospitalization to one that can be performed in an ambulatory setting, resulting in cost savings and improved quality of life for patients. The recent advent immune-effector cell (IEC) therapies and expansion of their indications is changing the treatment landscape for hematologic and non-hematologic malignancies. However, current financial models and reimbursement structures threaten the viability and sustainability of this treatment modality should it continue to require inpatient administration and management. This threat is leading institutions to develop outpatient IEC programs based off the outpatient AutoHCT templates. Integral to the success of both is a cohesive program with outpatient-specific standard operating protocols, highly-trained providers and staff with expertise specific in these treatment modalities, evidenced-based supportive care and prophylaxis plans, extensive caregiver vetting and education, and the infrastructure to support all individuals involved. In this policy and practice review we provide an overview of the guidelines and published academic experiences, give a perspective-based description of the roles and responsibilities of the individuals involved in this process at our institution, and highlight actionable recommendations that could allow for the dissemination and implementation of outpatient AutoHCT and IEC programs more broadly.

Using Intentional, Student-Centered Reflection to Address Mental Health and Self-Care in Prelicensure Nursing Students.

Prelicensure nursing students manage various stressors, including a rigorous curriculum, physically and psychologically demanding clinical rotations, supplementary work, family responsibilities, and an evolving licensure exam. Because of these stressors, nursing programs must address students' mental health concerns and the potential impact on academic performance. At a private university in the Midwest, a student-centered care plan reflection was implemented to support mental health concerns about the National Council Licensure Examination and promote coping skills. In response, students reported increased motivation, improved stress management, and reduced anxiety.

Establishing substitute families: Care arrangements for childless older people in urban China

While the issues of childlessness and social support in old age have received considerable attention in more developed countries, the phenomenon of aging without children in China has been relatively underexplored. The existing, albeit limited, literature highlights the vulnerability of the childless elderly in China and the inadequacy of social care services, which is predominantly directed toward most impoverished groups. This study examines the care arrangements and social support mechanisms for childless older people in urban China, emphasizing the role of community-level officers in this context. Drawing on in-depth interviews conducted in 2019 with 27 childless elderly individuals and 10 community-level officers in Shanghai, the study reveals the formation of community-based substitute families. These substitute families, comprising neighbors, extended family members, and friends, provide daily assistance, emotional support, and sometimes intensive care. The establishment of these substitute families hinges on the childless individuals’ ability to navigate public and social resources, as well as the institutionalized mobilization and informal work strategies of community-level officers. We argue that the care arrangements for childless older people are significantly shaped by the state's aging-in-place elder care policy. However, the effectiveness of this policy is mediated by the informal work strategies of community-level officers and the proactive care planning by the childless elderly themselves. Our findings offer important insights for improving the current family-based elder care policies and enrich our understanding of aging without children in urban China.

Determining the Effects of Complex Education on Primary Care Nurse Practitioners' Self-efficacy in Advance Care Planning for Healthy Adults.

Advance care planning is a process in which capable adults communicate their preferences for medical care in case of incapacitation. Regardless of health status, most adults are interested in advance care planning conversations and prefer providers to initiate these discussions. Primary care nurse practitioners are ideally positioned to lead these conversations but lack knowledge, confidence, and communication skills to do so. This project aimed to develop, implement, and evaluate an educational program for primary care nurse practitioners regarding leading advance care planning conversations with healthy adults. This evidence-based practice project used the Advance Care Planning Self-Efficacy Scale to measure primary care nurse practitioners' self-efficacy after completing a complex educational program. The educational program was developed based on a nationally recognized program incorporating didactic, observational, and role-play learning. The findings of this project indicated that providing complex education was an effective intervention immediately and after 3 months (P = .018 and P = .023, respectively). The results indicate that educating nurse practitioners is an effective intervention for increasing their self-efficacy in leading advance care planning conversations with healthy adults over 3 months, recommending additional intervention at least earlier than 6 months.

Care conundrum in the emergency department: The gap between clinician awareness and patient expectations surrounding advance directives.

Clinicians in the emergency department (ED) frequently encounter seriously ill patients at a time when advance directives may be pivotal in improved clinician decision-making. The objectives of this study were to identify the prevalence of advanced directives in ED patients, as well as patterns of advance care discussions between patients and providers. This study describes patients' perceptions and expectations of such serious illness discussions in an emergency care setting with the expectation of including patients as strategic members of the care team. Trained research assistants in two emergency departments surveyed patients over age 65, or their caregivers, from July 2016 to August 2018. Patients were verbally administered a standard survey tool related to advance directives and advance care planning. 497 out of 877 patients completed surveys (59.4%). 50% of patients reported having an advance care planning document. The large majority (92%) of patients with an advance directive had not been asked about it during their ED visit. When questioned about their personal preferences, 79% of patients thought emergency physicians should be aware of their wishes regarding life-sustaining treatments and end-of-life care. Paradoxically, only 38% expressed a desire to discuss advance care plans with an ED clinician. Older patients expect emergency clinicians to be aware of their care preferences, yet most are not asked about these care preferences in the ED. The large gap between patient preference and reality suggests the need for more targeted discussion by ED clinicians and translation of patient perspectives into system healthcare improvements. Future studies should explore barriers to advance care planning in the ED as well as patient preferences for these conversations to support a true healthcare learning system.

Lesbian and bisexual breast cancer survivors' post-treatment resource needs.

The purpose of our study was to identify and describe determinants of lesbian and bisexual breast cancer survivors' post-treatment resources. We used a cross-sectional descriptive study design. The data reported here were gathered as part of OUT: The National Cancer Survey, administered electronically from September 2020 to March 2021 via social media and community partners. We used descriptive statistics, Fisher's exact tests, and thematic analysis to analyze survivor perceptions of information availability, treatment environment, care plans, social support, and health. Of those who participated in the survey, (N =430) 366 identified as lesbian, and 64 identified as bisexual. Mean age was 58.6 years (range 21 - 91 years). Fewer than 11% of our sample indicated they could find helpful information about being a queer person with cancer during their treatment. Over 75% of our sample that received a cancer survivorship care plan indicated that their plan did not include resources for queer individuals. Affirming cancer treatment environments and resources tailored to the needs of lesbian and bisexual breast cancer survivors are critical for reducing disparities. Survivorship care plans should include resources for queer individuals as a part of holistic cancer care.

Feasibility and acceptability of the ShareD dEciSIon making for patients with kidney failuRE to improve end-of-life care intervention: A pilot multicentre randomised controlled trial

BackgroundKidney failure is associated with a high disease burden and high mortality rates. National and international guidelines recommend health professionals involve patients with kidney failure in making decisions about end-of-life care, but implementation of these conversations within kidney services varies. We developed the DESIRE (ShareD dEciSIon-making for patients with kidney failuRE to improve end-of-life care) intervention from our studies investigating multiple decision maker needs and experiences of end-of-life care in kidney services. The DESIRE intervention's three components are a training programme for health professionals, a patient decision aid, and a kidney service consultation held to facilitate shared decision-making conversations about planning end-of-life care. ObjectivesTo assess the feasibility and acceptability of integrating the DESIRE intervention within kidney services. DesignA pilot study using a multicentre randomised controlled design. SettingFour Danish nephrology departments. ParticipantsPatients with kidney failure who were 75 years of age or above, their relatives, and health professionals. MethodsPatients were randomised to either the intervention or usual care. Feasibility data regarding delivering the intervention, the trial design, and outcome measures were collected through questionnaires and audio recordings at four points in time: before, during, post, and 3 months after the intervention. Acceptability data were collected through semi-structured interviews with patients and relatives, as well as a focus group with health professionals post the intervention. ResultsTwenty-seven patients out of the 32 planned were randomised either to the intervention (n= 14) or usual care (n= 13). In addition, four relatives and 12 health professionals participated. Follow-up was completed by 81 % (n= 22) of patient participants. We found that both feasibility and acceptability data suggested health professionals improved their decision support and shared decision-making skills via the training. Patient and relative participants experienced the intervention as supporting a shared decision-making process; from audio recordings, we showed health professionals were able to support proactively decision-making about end-of-life care within these consultations. All stakeholders perceived the intervention to be effective in promoting shared decision-making and relevant for supporting end-of-life care planning. ConclusionsParticipant feedback indicated that the DESIRE intervention can be integrated into practice to support patients, relatives, and health professionals in planning end-of-life care alongside the management of worsening kidney failure. Minimising exhaustion and enhancing engagement with the intervention should be a focus for subsequent refinement of the intervention. RegistrationThe study has been registered at ClinicalTrials.gov with the identifier: NCT05842772. Date of first recruitment: March 20, 2023.

The drive-through COVID-19 vaccination in Yogyakarta

Introduction: COVID-19 vaccination is the government's priority to control viral transmission. Drive-through system provides quick means of product or service delivery; however, it has not been extensively adopted as a vaccination method. This study aims to describe the implementation of the drive-through COVID-19 vaccination conducted by the Faculty of Medicine, Public Health, and Nursing at Universitas Gadjah Mada in collaboration with several national and regional, governmental and non-governmental institutions. Methods: The drive-through vaccination involved online registration, data collecting, reporting, on-site dose preparation, injection, and post-vaccination monitoring while participants remained in their vehicles. The events were scheduled between July and September 2021 in either FK-KMK UGM Campus or Grha Sabha Pramana, UGM. These venues are on the inner property side of UGM, therefore is no disruption of public traffic. Participants who are eligible and receive an invitation may attend the immunization venue according to the schedule. Results: In ten vaccination events, 20,870 doses of the COVID-19 vaccine were administered. Most participants were young people, with slightly more women than men. The drive-through vaccination went relatively well and offered many benefits such as improving vaccine coverage, time efficiency, social distancing, and herd immunity. Yet, issues like mild Adverse events following immunization and an accumulation of vehicles occurred. Therefore, careful planning and risk anticipation are necessary. Conclusion: The drive-through vaccination generally provides rapid and safe vaccine delivery to large communities. This method could be an alternative to delivering mass vaccinations requiring rapid and extensive coverage.

Factors Associated With the Initiation of Comfort-Focused Nutrition Care Orders for Long-Term Care Residents at End of Life.

Comfort-focused nutrition orders are recommended to manage eating changes among long-term care (LTC) residents nearing the end of life, though little is known about their current use. This investigation aims to describe current practices and identify resident-level and time-dependent factors associated with comfort-focused nutrition orders in this context. Data were retrospectively extracted from resident charts of decedents (≥65 years at death, admitted ≥6 months) in 18 LTC homes from two sampling frames across southern Ontario, Canada. Observations occurred at 6 months (baseline), 3 months, 1 month and 2 weeks prior to death. Extracted data included functional measures (e.g. cognitive performance, health instability) at baseline, formalised restorative and comfort-focused nutrition care interventions at each timepoint and eating changes reported in the progress notes in 2 weeks following each timepoint. Logistic regression and time-varying logistic regression models determined resident-level (e.g. functional characteristics) and time-dependent factors (e.g. eating changes) associated with receiving a comfort-focused nutrition order. Less than one-third (30.5%; n = 50) of 164 participants (61.0% female; mean age = 88.3 ± 7.5 years) received a comfort-focused nutrition order, whereas most (99%) received at least one restorative nutrition intervention to support oral food intake. Discontinuation of nutrition interventions was rare (8.5%). Comfort orders were more likely with health instability (OR [95% CI] = 4.35 [1.49, 13.76]), within 2 weeks of death (OR = 5.50 [1.70, 17.11]), when an end-of-life conversation had occurred since the previous timepoint (OR = 5.66 [2.83, 11.33]), with discontinued nutrition interventions (OR = 6.31 [1.75, 22.72]), with co-occurrence of other care plan modifications (OR = 1.48 [1.10, 1.98]) and with a greater number of eating changes (OR = 1.19 [1.02, 1.38]), especially dysphagia (OR = 2.59 [1.09, 6.17]), at the preceding timepoint. Comfort-focused nutrition orders were initiated for less than one-third of decedents and most often in the end stages of life, possibly representing missed opportunities to support the quality of life for this vulnerable population. An increase in eating changes, including new dysphagia, may signal a need for proactive end-of-life conversations involving comfort nutrition care options. Early and open conversations with residents and family about potential eating changes and comfort-focused nutrition care options should be encouraged and planned for among geriatric nursing teams working in LTC. These conversations may be beneficial even as early as resident admission to the home.

Structure of Advance Care Planning Practice by Home Health Nurses for Multigenerational Families With Dependent Children and Terminally Ill Grandparents

The present study aimed to identify the structure of advance care planning (ACP) practices implemented by home health nurses (HHNs) for multigenerational families with dependent children and terminally ill grandparents. Interviews of 20 HHNs were conducted. The grounded theory approach was used to describe the interactions among families with dependent children, terminally ill grandparents, and HHNs. The results showed that the structure of ACP practices for multigenerational families with dependent children and terminally ill grandparents was composed of 2 levels. First, HHNs were providing the underlying foundational “Practice of supporting end-of-life care (EOL care) at home” for family members from 2 generations: sandwich generation caregivers (SGCs) and terminally ill grandparents. Second, they were providing “Practices that connect multiple generations,” “Practices that address the children,” and “Practices that involve hands-on experience and communication” for multigenerational families with dependent children and terminally ill grandparents. Practices based on providing stability among family members from 2 generations, SGCs and terminally ill grandparents, were the nursing practice structure that activated ACP for multigenerational families with dependent children and terminally ill grandparents.

Distressed personality is associated with late adverse effects in long-term survivors of Hodgkin lymphoma.

There are few studies of personality traits in long-term Hodgkin lymphoma survivors (HLSs) treated according to contemporary stage-and risk-adapted approaches. The Distressed Personality (DP) Scale covers negative affectivity and social inhibition. We examined differences in self-reported late adverse effects (LAEs) between HLSs with and without DP and other explanatory variables. This cross-sectional questionnaire-based study included a population-based cohort of HLSs treated from 1997 to 2006, aged 8-49 years at diagnosis, and alive in 2016. Among 518 eligible HLSs, 303 responded (58%), and 294 completed the DP scale. DP was defined by scores above cut-off on both the negative affectivity and social inhibition subscales. LAEs studied were major depression, posttraumatic stress disorder, sleep problems, obesity, neuropathy, fatigue, memory problems, and general health. DP and 10 other explanatory variables were tested against LAEs as dependent variables in multivariable regression analyses. The mean age at survey was 45.9 years (standard deviation [SD] 4.6), mean follow-up time 16.7 years (SD 3.0), and 48% were females. Eighty-two HLSs had DP (28%, 95% confidence interval 23% - 33%). All LAEs except obesity were significantly more common/had higher mean score in HLSs with DP. In multivariable analyses, presence of DP was significantly associated with all LAEs except obesity. The presence of DP is common among HLSs. The presence of DP was associated with most self-report LAEs examined. Including assessment of personality traits in the survivorship care plans of HLSs should be considered. Prospective studies assessing the influence of pretreatment DP on LAEs are warranted.

Contributions of the Communication and Management of Bad News in Nursing to the Readaptation Process in Palliative Care: A Scoping Review

Background: Delivering bad news is a sensitive and challenging aspect of nursing healthcare, requiring a holistic approach that respects patients’ preferences, cultural values, and religious beliefs to promote adaptation to the person’s state of health. Aim: We aim to map the evidence of the dimensions present in the communication and management of bad news by nurses to a person in a palliative situation, their caregivers, and their family members. Methods: Based on the Joanna Briggs Institute methodology, the search was conducted through MEDLINE Complete (EBSCOhost), CINAHL Complete (EBSCOhost), SciELO, and the Open Access Scientific Repository in Portugal. From a total of 756 articles, 14 were included, published between 2018 and 2023. Results: Structure components in bad news are influenced by the characteristics of the palliative patients, their caregivers, their family members, the nurses, and the organizational environment. Promoting the quality of the communication process is desirable through continuous and advanced training in end-of-life care, training in bad news, religiously and culturally sensitive nursing interventions centered on hope and maintaining faith, emotional management, and the utilization of a checklist protocol. Conclusions: Honest communication allows people to actively participate in the decision-making process and in the trajectory of the care plan that is focused on themselves and their preferences, which has outcomes in functional capacities and readaptation.