Caregiving Challenges Research Articles

Social and leisure engagement moderates the association between care partner distress and cognitive status of care recipients with dementia

ABSTRACT Objectives Despite the established impact of care recipient cognitive impairment on care partner (CP) distress, limited quantitative research has explored how social and leisure engagement may moderate this relationship, offering a potential avenue for enhancing well-being in both care partners and recipients. The current study therefore examined the between- and within-dyad associations between cognitive impairment of persons with dementia (PwD) and their family CP’s distress, and whether social and leisure activity moderated this relationship. Methods Data were utilized from dyads (PwD, n = 33, and their CPs, n = 34) engaged in the Voices in Motion project, a social-cognitive choral intervention for PwD and their family CPs. Measures indexing PwD cognitive status, CP distress, and PwD and CP social and leisure engagement were assessed using an intensive repeated-measures burst design, with multilevel models of change employed to disaggregate between- and within-person effects. Results Diminished cognitive functioning in PwD was associated with increased CP distress (p < 0.01) between-dyads; however, this relationship was not significant within-dyads. The between-dyad association was significantly moderated by the extent of social and leisure engagement of both CPs (p < .001) and PwD (p = .04). Follow-up simple slopes demonstrated that, at mean- and high-levels (+1SD) of social and leisure engagement for PwD and/or CP, increased PwD cognitive function significantly predicted lower CP distress. Conclusion The significant moderating influence of social and leisure engagement of dyads underscores the protective role of such engagement for reducing care-related distress. Activity engagement for CPs and PwD may help modulate the deleterious impact of PwD cognitive impairment and attenuate CP distress. These findings highlight the potential for dyadic interventions that promote social and leisure activities to mitigate caregiving challenges and enhance quality of life for both CPs and PwD.

Treatment Adherence in Pediatric Atopic Dermatitis: A Systematic Review.

Adherence to pediatric atopic dermatitis (AD) treatment regimens can be complex and a major challenge to optimizing treatment outcome. We aimed to review factors associated with nonadherence in pediatric AD and propose interventions to improve adherence. PubMed and EMBASE databases were systematically searched for articles from 2000 to February 2023 related to AD and adherence, with an additional update in December 2023. Non-human studies, reviews, commentaries, and meta-analyses were excluded. Articles were sorted into pediatric versus adult study population based on volume. Herein, we examine the results of papers discussing adherence factors related to pediatric patients. A total of 62 studies met inclusion criteria. Thirty-six studies surveyed patients and caregivers (N = 10,268) to identify barriers to treatment adherence. None of the included studies were specific to systemic medications. Barriers includedpoor caregiver quality of life, inadequate AD-related education, topical corticosteroid (TCS) phobia, unclear therapy-related instructions, and dissatisfaction with physician interaction. Five studies solely measured adherence using medication electronic monitoring systems, Morisky medication adherence scale, or self-reported adherence to measure adherencetotopical medications. Twenty-one studies described interventions involving nurse-led or web-based education programs, text message or email reminders, and TCS education. Adherence was improved with caregiver education programs, daily text-message reminders, eczema action plans, TCS potency "traffic light" color system, and frequent follow-up visits. Adherence to pediatric AD treatment poses a multifactorial challenge for caregivers and patients. This study provides an index of strategies to optimize adherence, as it is essential for prevention of long-term sequela associated with AD in children. As the AD treatment landscape rapidly expands, further studies are vital to assess pediatric adherence to new topical, oral, and injectable medications. PROSPERO: CRD42023488557.

Managing Aggressive Behavior in Adolescents With Autism Spectrum Disorder: Pharmacological and Non-Pharmacological Approaches.

Adolescents diagnosed with autism spectrum disorder (ASD) often encounter significant challenges, particularly aggressive behaviors that persist into adulthood and profoundly affect their daily functioning and quality of life. These behaviors not only pose hurdles for affected individuals but also present considerable challenges for caregivers and families. Managing aggression in adolescents with ASD requires comprehensive treatment approaches encompassing both non-pharmacological and pharmacological interventions. This paper reviews current interventions that have proven to be effective through empirical studies in managing aggression among adolescents with ASD. By synthesizing evidence-based practices, this study underscores the importance of a multidisciplinary approach involving medical, psychological, and educational interventions to effectively manage aggression among adolescents with ASD. It aimed to inform clinicians, educators, and caregivers of practical strategies and evidence-based interventions to address aggression in this population.

Neonatal presentations in the pediatric emergency department: A decade-long retrospective analysis

BackgroundThe global increase in neonatal visits to Pediatric Emergency Departments (PEDs) underscores the need to better understand the factors driving these visits and their implications. The often vague and nonspecific symptoms of neonates pose significant challenges for clinicians and caregivers in determining the appropriate level of care, impacting the frequency of return visits and overall effectiveness of discharge education. ObjectiveThis study aims to compile the most common chief complaints of neonates in the PED and analyze their association with admission rates and final ED diagnoses to inform educational interventions for caregivers and medical personnel. MethodsThis was a retrospective review of data from medical records from neonatal (≤30 days of life) presentations to the PED at a quaternary care medical center in Portland, Oregon, USA from January 2012 to December 2022. Results3175 patient encounters were identified, of which one-third (38 %) were admitted to the hospital. The most frequent 25 chief complaints are shown in Table 1. Certain complaints had higher admission rates than the average: temperature instability (71 % for “fever” and 89 % for “hypothermia”), breast concerns (68 %), abnormal lab results (63 %), “seizures” (53 %), and cardiac concerns (54 %). Notably, neonates presented on DOL 0 and DOL 1 had elevated admission rates of 77 % and 66 %, respectively. ConclusionThis study identified specific complaints that were most likely to result in hospital admissions and return visits to the ED. This can guide targeted educational interventions for caregivers and ED providers and refinement of triage protocols to ensure that neonates receive the most appropriate and efficient care.

Understanding the extent of caregiver involvement and needs in treatment-impacting activities.

187 Background: Caregivers are known to be a significant part of patient care; however, the extent of their role is commonly underestimated and they often feel ‘invisible’. COLONTOWN (CT) is a virtual colorectal cancer community providing peer support and evidence-based education for both caregivers and patients. As such, we sought to understand caregivers’ involvement related to treatment decision making and care delivery, and related gaps in support. Methods: Our online anonymous survey was posted in May 2024 to members of CT’s international caregiver community, who may be more active in their patients’ care than typical of the broader CRC population. It included 33 questions on caregiving responsibilities, effect of cancer on other life activities, impacts, support received/needed and 13 demographic questions. We identified a subset of 9 questions specifically related to treatment that are reported here. Results: All data was self-reported based on their patient’s time in active treatment. Of 359 respondents, 88% were female and 86% significant others/spouses. Their patients were 90% Stage IV and 85% in the US with 17 other countries represented. Caregivers nearly always participate in and often have primary responsibility in treatment-impacting activities (Table). This includes researching treatment options, where among the 69% in a primary role 31% have complete responsibility, managing side effects, and recording and reporting symptoms. 88% were always or usually at appointments and/or otherwise in direct contact with the care providers. Caregivers' roles, however, are not always recognized by their patient’s care team. Only 6% felt completely supported and 21% felt completely respected by their patient’s care team. 66% felt “Enhanced communication and collaboration with healthcare providers” would aid in their role in patient care. 56% indicated “more education resources for caregivers” are needed. Conclusions: Caregivers report assuming primary responsibility in many critical activities in patient treatment. The gap in recognizing this dynamic contributes to the challenges of caregiving. CT embraces the vital role of caregivers by offering dedicated caregiver resources and engaging them as equal partners in development and offering of all programs . Acknowledgement of the depth of the caregiver role is needed and more caregiver support should become a standard component of the patient’s care plan. Any shared decision-making processes and education should appropriately recognize and include caregivers as critical stakeholders as requested by their patient. Caregivers’ reported role in treatment-impacting caregiving activities. Activity Primary Role % Split Evenly % Support Role % No Role % Researching treatment options 69 13 17 1 Researching/managing side effects 64 21 14 1 Symptom reporting 47 24 23 6 Coordinating care 44 27 25 4

The Association of Employee's Unmet Social Needs and Self-reported Illness Related Absenteeism.

Examine the extent to which various unmet social needs (USN) are associated with self-reported injury and illness related absenteeism (SRIRA). The analysis consisted of a retrospective study design of secondary data. Linear regression was used to measure the 2022 association between six measures of USN (both individual and a summary measure) and SRIRA. A greater number of USN is associated with higher SRIRA (b = 0.71, P < .001). Self-reported challenges in caregiving, food, healthcare, housing, transportation, and utilities are also individually significantly associated with higher SRIRA. Employers may consider providing comprehensive resource support as part of their strategy to aid in reducing USN and their association with SRIRA.

Bridging the Gap: Addressing Educator and Caregiver Challenges in Transitioning Students with ASD to Higher Education and TVET - A Scoping Review

Students with Autism Spectrum Disorder (ASD) often struggle with communication and social skills, necessitating significant support from family, caregivers, and educators. In Malaysia, while Special Education Needs (SEN) students are typically integrated into general education during their school years, their presence in tertiary education or TVET remains underrepresented. This scoping review aims to identify and understand the challenges general educators and caregivers face in facilitating the transition of ASD students from higher education to tertiary education and TVET. A comprehensive analysis of literature from Scopus, ProQuest, and Science Direct databases, focusing on studies published between 2013 and 2023, was conducted. The findings reveal mixed experiences, highlighting significant difficulties and areas for improvement. General educators and caregivers report numerous challenges, including inadequate training, insufficient resources, and a lack of tailored support systems, which collectively hinder the smooth transition of ASD students into higher educational settings. It suggests that targeted interventions and increased collaboration between educators and caregivers can lead to more positive outcomes. This study provides original insights into the specific needs and barriers faced by ASD students in Malaysia, offering valuable implications for policymakers, educators, and caregivers to create more inclusive and effective educational transitions. Future research on transitioning students with ASD to higher education and TVET should focus on longitudinal studies to track long-term outcomes, the development and evaluation of targeted intervention programs, and the role of assistive technologies in the transition process.

Caregiving experiences and practices: qualitative formative research towards development of integrated early childhood development interventions targeting Kenyans and refugees in Nairobi’s informal settlements

BackgroundEvidence is needed to understand factors that influence child development and caregiving experiences, especially in marginalized contexts, to inform the development and implementation of early childhood development (ECD) interventions. This study explores caregiving practices for young children in an urban informal settlement with Kenyans and embedded refugees, and identifies factors shaping these caregiving experiences, to inform the design and development of potentially appropriate ECD interventions.MethodsA qualitative formative study, which included 14 focus group discussions (n = 125 participants), and 13 key informant interviews was conducted between August and October 2018. Purposive sampling approaches were used to select a diverse range of respondents including caregivers of children below three years of age and stakeholders of Kenyan nationality and refugees. Data were analysed using a thematic approach and the Nurturing Care Framework was used as an interpretative lens.ResultsThere was a fusion of traditional, religious and modern practices in the care for young children, influenced by the caregivers’ culture, and financial disposition. There were mixed views/practices on nutrition for young children. For example, while there was recognition of the value for breastfeeding, working mothers, especially in the informal economy, found it a difficult practice. Stimulation through play was common, especially for older children, but gaps were identified in aspects such as reading, and storytelling in the home environment. Some barriers identified included the limited availability of a caregiver, insecurity, and confined space in the informal settlement, all of which made it difficult for children to engage in play activities. Physical and psychological forms of discipline were commonly mentioned, although few caregivers practiced and recognized the need for using non-violent approaches. Some overarching challenges for caregivers were unemployment or unstable sources of income, and, particularly for refugee caregivers, their legal status.ConclusionThese findings point to the interplay of various factors affecting optimal caregiving for young children in an urban informal settlement with Kenyans and refugees. Integrated ECD interventions are needed for such a mixed population, especially those that strive to anchor along caregivers’ social support system, co-designed together with community stakeholders, that ideally focus on parent skills training promoting nurturing care and economic empowerment.

Spiritual Challenges of Family Caregivers of Patients in a Vegetative State: A Qualitative Content Analysis

Background: Spirituality helps family caregivers of vegetative state patients to overcome the stressful conditions of patient care. However, the illness and caregiver burden may also negatively affect the caregiver’s spirituality. Accordingly, this study aimed to investigate the challenges of family caregivers of patients in a vegetative state. Methods: The present qualitative study was conducted through conventional content analysis from August 2020 to September 2021 in two provinces of Iran (Sistan and Baluchestan and Khorasan Razavi). A total of 20 family caregivers of patients in a vegetative state were included in the study. Semi-structured interviews were employed to collect data. Data were analyzed using the method proposed by Graneheim and Lundman via MAXQDA2020 software. Data collection continued until data saturation and identification of main categories. Results: Based on data analysis, spiritual disintegration and spiritual coherence were identified as the two main categories to describe the spiritual challenges of family caregivers of patients in a vegetative state. The experiences of family caregivers showed that spirituality is effective in accepting the conditions and adapting to the role of the patient caregiver. However, illness and caregiver burden lead to spiritual damage and the turning away of family caregivers from performing religious rites and rituals. Conclusion: Considering the undeniable role of spirituality in dealing with the stressful situation of caring for a patient in a vegetative state, the spiritual needs of family caregivers and the implementation of nursing interventions to enhance the spiritual health of caregivers should be given more attention.

Exploring Gendered Relational Dynamics in Palliative Care: A Qualitative Study on Women Professional Caregivers in India.

The gendered dynamics in palliative care settings in India are deeply influenced by societal norms, which position caregiving primarily as a woman's responsibility. This study explores the experiences of women caregivers in Bengaluru, Karnataka, India, to understand their challenges and strategies. This qualitative study used a narrative approach to investigate the lived experiences of 38 women caregivers from six palliative care institutions in Bengaluru. Semi-structured interviews conducted in Kannada captured the nuances of their caregiving roles. Thematic analysis was employed to identify key themes related to caregiving challenges and coping mechanisms. The study reveals that women caregivers face significant burdens due to societal expectations and institutional constraints, including resource shortages and limited professional development opportunities. Despite these challenges, the women demonstrated resilience through strong social networks, spiritual practices, and effective time management. However, relying on informal support systems highlights a gap in formal institutional support. The findings emphasise the need for comprehensive support systems within palliative care institutions that address the practical and cultural challenges of caregiving. Future research should include a more diverse sample, including male caregivers, and explore the evolving nature of caregiving challenges.

Practices for introducing complementary foods in Taiwan: A nationwide survey from 2013 to 2016

Background/purposeIntroducing complementary foods to infants is a critical stage in their healthy growth and development process. In this study, we analyzed the feeding habits and choices of caregivers in Taiwan during this essential transition period. MethodsData from the 2013–2016 Nutrition and Health Survey in Taiwan were analyzed. Using a multistage stratified sampling technique, we collected data through questionnaires on the feeding practices, challenges, and information sources associated with complementary feeding. We also investigated the timing of introducing various foods. Certain feeding indicators recommended by the World Health Organization were modified and used for analysis. ResultsAmong 439 caregivers of infants aged 2–24 months, complementary feeding typically began at 5 months, and it primarily began with cereals and pureed foods. At 6–8 months of age, 98.29% of the infants received these foods. Only 48.39% of infants aged 6–24 months consumed eggs or flesh foods. Among the primary challenges for caregivers were concerns regarding infants’ adaptation to new foods (38.2%), refusal of foods by infants (37.1%), and uncertainty regarding which foods to introduce (11.4%). The main sources of information were friends and family (46.9%), the Internet (46.5%), and baby care books (35.6%). Notably, approximately 51% of the respondents used commercial baby foods. ConclusionIn Taiwan, although the majority of infants begin complementary feeding on time, the introduction of eggs and flesh foods is typically delayed. Given the growing reliance on the Internet in the modern age, accurate feeding information should be disseminated online.

Navigating the Journey of Living with Young-Onset Dementia: Experiences of Spousal Caregivers.

Young-onset dementia (YOD) refers to dementia occurring before the age of 65, with Alzheimer's disease being the most common form, posing distinct challenges for spousal caregivers. This study aims to investigate the unique experiences of spousal caregivers of persons with YOD in China, where dementia-specific community care services and primary healthcare professionals are relatively lacking, in order to inform the tailored support services development. This qualitative-design study utilized semi-structured interviews with 11 spousal caregivers of persons with YOD dwelling in the community. Traditional content analysis was employed to analyze the interview data. Limited dementia-specific healthcare professionals and low public awareness made diagnosing and accepting YOD a prolonged and challenging journey. Spousal caregivers faced skepticism when seeking diagnosis, exacerbating their burden and emotional stress. Disparities in healthcare professionals and insufficient collaboration between institutions worsened the situation. YOD significantly impacted family dynamics and led to changes in emotional communication within the family. The stigma surrounding YOD raised concerns among spousal caregivers about their children's future in marriage and career, emphasizing genetic risks. In settings where dementia-specific community care services and primary healthcare professionals are limited and unevenly distributed, integrating support services at both the primary and community levels is crucial for families dealing with YOD in the community. Additionally, raising public awareness about YOD can foster a more understanding and supportive environment, addressing challenges related to stigma faced by affected families, contributing to increased investment in supporting resources, and encouraging individuals to seek help early on.

Development and Evaluation of a Web-Based Platform for Personalized Educational and Professional Assistance for Dementia Caregivers: Proposal for a Mixed Methods Study.

Alzheimer disease (AD) and AD-related dementia are prevalent concerns for aging populations. With a growing older adult population living in the United States, the number of people living with dementia is expected to grow, posing significant challenges for informal caregivers. The mental and physical burdens associated with caregiving highlight the importance of developing novel and effective resources to support caregivers. However, technology solutions designed to address their needs often face low adoption rates due to usability issues and a lack of contextual relevance. This study focuses on developing a web-based platform providing financial and legal planning information and education for dementia caregivers and evaluating the platform's usability and adoptability. The goal of this project is to create a web-based platform that connects caregivers with personalized and easily accessible resources. This project involves industrial, academic, and community partners and focuses on two primary aims: (1) developing a digital platform using a Dementia Care Personalization Algorithm and assessing feasibility in a pilot group of caregivers, and (2) evaluating the acceptability and usability of the digital platform across different racial or ethnic populations. This work will aid in the development of technology-based interventions to reduce caregiver burden. The phase I study follows an iterative Design Thinking approach, involving at least 25 dementia caregivers as a user feedback panel to assess the platform's functionality, aesthetics, information, and overall quality using the adapted Mobile Application Rating Scale. Phase II is a usability study with 300 dementia caregivers in Texas (100 African American, 100 Hispanic or Latinx, and 100 non-Hispanic White). Participants will use the digital platform for about 4 weeks and evaluate its usefulness and ease of use through the Technology Acceptance Survey. The study received funding from the National Institute on Aging on September 3, 2021. Ethical approval for phase I was obtained from the Texas A&M University Institutional Review Board on December 8, 2021, with data collection starting on January 1, 2022, and concluding on May 31, 2022. Phase I results were published on September 5, 2023, and April 17, 2024, respectively. On June 21, 2023, ethical approval for human subjects for phase II was granted, and participant recruitment began on July 1, 2023. Upon completing these aims, we expect to deliver a widely accessible digital platform tailored to assist dementia caregivers with financial and legal challenges by connecting them to personalized, contextually relevant information and resources in Texas. If successful, we plan to work with caregiving organizations to scale and sustain the platform, addressing the needs of the growing population living with dementia. DERR1-10.2196/64127.

Improving growth in infants with CF.

Cystic fibrosis (CF) results in chronic pulmonary infections, inflammation, pancreatic insufficiency, and multiple gastrointestinal manifestations. Malnutrition and poor growth are hallmarks of CF, and strongly associated with poor outcomes. Through newborn screening, many infants can be diagnosed within a few days of life, which allows for early initiation of nutritional counseling and close clinical follow-up. Obstacles to growth for infants with CF start in utero, as newborns with CF can have a lower birth weight than the general population. Improving infant growth has been linked to improved clinical outcomes and survival. It remains a top priority and challenge for caregivers and healthcare teams. An interdisciplinary approach, including registered dietitian and social work support, is essential to optimize health for infants with CF. Remaining barriers to normalcy include deficits in linear growth, lack of accurate nutrition biomarkers, persistence of inequities related to social determinant of health, particularly in the global CF community.

Navigating the Unique Challenges of Caregiving for Children with Rare Diseases: Are the Care Experiences of All Caregivers the Same? A Focus on Life-Limiting Rare Diseases.

Background: Caregiving experiences in rare diseases (RDs) vary based on factors such as specific clinical entity, disease severity, the child's age, and available support and resources, leading to challenges that significantly impact caregivers' lives. This study investigates whether caregivers of children with different RDs encounter varied aspects of care. Methods: This study was conducted as a self-administered, anonymous, computer-assisted online survey, focusing on the challenges of caregiving for children with RDs. Questions covered aspects such as information availability on RDs, diagnostic processes, modern treatment accessibility, family physicians and specialists, the impact of caregiving on personal life, family dynamics, and financial challenges. To achieve our study objectives, we categorized caregivers of children with RDs into two groups to compare various aspects of caregiving: caregivers of children with phenylketonuria (PKU) (n = 175) and those caring for children with life-limiting rare diseases (LLRD) (n = 226). Results: Caregivers of children with LLRD reported greater emotional challenges, personal sacrifices, and financial burdens compared to caregivers of children with PKU. Significant differences included heightened emotional distress, more frequent conflicts, and lower assessments of healthcare support among LLRD caregivers. Although family support ratings were similar between the groups, perceptions of financial concerns and interactions with the healthcare system varied significantly. Conclusions: This study, representing the inaugural systematic comparison of specific caregiver cohorts overseeing children with RDs across a substantial sample size, provides valuable insights. The findings lay a crucial foundation for precisely tailoring assistance and support initiatives to meet the unique needs of caregivers facing various RDs in diverse contexts.

CHALLENGES AND COPING STRATEGIES OF AUTISM PARENTING: A SYSTEMATIC LITERATURE REVIEW OF PARENTS’ AUTOETHNOGRAPHIES

Background and Purpose: Parents of autistic children face caregiving challenges, yet there is a dearth of research specifically analysing parents’ autoethnographies. This systematic literature review explores themes of challenges and coping strategies in autism caregiving, guided by the Transactional Theory of Stress and Coping (Lazarus &amp; Folkman, 1984). Methodology: Following Kitchenham and Charters’ (2007) guidelines, a systematic literature search of autoethnographies by parents of autistic children was conducted using online databases. The search was guided by two questions: (1) What are the challenges faced by parents caring for their autistic children?; and (2) What are the coping strategies employed by parents in caring for their autistic children? Findings: Twelve autoethnographies were analysed. Themes regarding challenges included parents experiencing fears, feeling despair and facing barriers and stigmatisation. Coping strategies identified included parents seeking answers, having hopes, and gaining empowerment besides providing support. Limitations and future research directions were discussed. Contributions: This paper emphasises understanding challenges faced by parents of autistic children. It illuminates emotional and societal aspects of autism parenting, emphasising the necessity for tailored support systems. Additionally, it reveals parents' coping strategies, including empowerment and supporting others, indicating increased understanding of their children's autism and active facilitation of support networks. Keywords: Well-being, Autism parenting, Autoethnography, challenges, coping. Cite as: Bakar, R. A., Ghani, K. D. A., Aziz, N. I., &amp; Mohamad, N. H. S. (2024). Challenges and coping strategies of autism parenting: A systematic literature review of parents’ autoethnographies. Journal of Nusantara Studies, 9(2), 340-370. http://dx.doi.org/10.24200/jonus.vol9iss2pp340-370

Revealing the Most Vulnerable Groups: Courtesy Stigma in Caregivers of Autistic Persons in Quebec.

Caregivers of autistic persons often face "courtesy stigma," a phenomenon by which caregivers experience stigma because of their association with a person whose disability may be stigmatized. Understanding the repercussions of this stigma is crucial not only for caregivers' mental health but also for the quality of care provided to their dependent. This study aimed to explore courtesy stigma among caregivers of autistic persons in Quebec, examining its prevalence and impact in order to identify groups that are particularly susceptible to negative outcomes. This study used a cross-sectional online survey methodology employing quota sampling to collect responses from 194 participants. Data were collected using a computer-assisted web interview (CAWI) platform. The impact of courtesy stigma was measured in terms of care burden, mental health, and overall well-being of caregivers. The findings revealed that caregivers frequently experience rejection, isolation, and work-related challenges. Notably, caregivers' health was below average with the lowest reported health outcomes in Quebec. The caregivers who are the most vulnerable to negative outcomes included female caregivers, those aged 45 or older, financially strained households, caregivers of children requiring elevated levels of support, caregivers who isolated due to their autistic dependents, and those who experienced stigmatization directed at themselves or their children in the form of rejection.Interestingly, 60% of respondents reported that the caregiving burden was "not at all" to "somewhat" difficult, raising questions about factors that may mitigate caregiving challenges over time. Negative outcomes from courtesy stigma vary depending on certain risk factors and individual characteristic. This study underscores the need for targeted public policies and interventions, particularly for those at a higher risk of experiencing the negative effects of courtesy stigma on the burden of care, overall health, and mental health. By tailoring resources and support for these priority groups, we can better address the challenges faced by families of autistic persons.

Inside the Hospitalization Voyage of Schizophrenia Care: A Single-Center Journey.

Schizophrenia poses significant challenges for individuals and caregivers, often leading to recurrent hospitalizations. Limited information on patients with schizophrenia and multiple hospitalizations in Romania is available in the scientific literature. Our study aimed to evaluate the characteristics of patients with schizophrenia with multiple hospitalizations in a single center in Cluj-Napoca, analyzing if specific patterns exist between patients with two or more hospitalizations or between men and women. We conducted a retrospective study on patients diagnosed with schizophrenia according to the 10th revision of the International Classification of Diseases (ICD 10), hospitalized at the County Emergency Hospital of Cluj-Napoca, Romania, between 2018 and 2022. Data on demographics, somatic comorbidities, symptom severity using the positive and negative syndrome scale (PANSS) or the brief psychiatric rating scale (BPRS), antipsychotic medication, and adverse effects were collected. We evaluated 62 patients, aged from 23 to 57 years, with 157 hospitalizations (ranging from two to seven per patient). No familial history of schizophrenia (56.5%) or bipolar disorder (71%) was reported by most patients. Forty-eight patients were male, and 45 had two hospitalizations. Age, sex, living place and conditions, season of birth, and marital status were similar in patients with two or more than two hospitalizations (p-values > 0.10). Significant differences were observed between patients with two or more than two hospitalizations regarding smoking (63.3% vs. 79.1%, p-value = 0.0029) and symptoms of fear at admission (40.0% vs. 65.7%, p-value = 0.0015). We observed lower scores in the overall PANSS and BPRS scores at discharge compared to admission (p-values < 0.001), regardless of the group (two or more than two hospitalizations, men vs. women). Men and women showed differences in hospitalization stays (median 17.25 vs. 15 days, p-value < 0.001) and BPRS scores at admission (p-value = 0.012) and discharge (p-value = 0.016). Fewer First-Generation Antipsychotics were prescribed for those with two admissions, and nearly half reported adverse effects, notably tachycardia (29%), with similar occurrence within groups. Our results showed that the candidate for multiple hospitalizations is a male, with a mean age of 37 years, unmarried, and living with someone in urban settings, more likely a smoker who exhibits fear symptoms.

Through Alzheimer’s Eyes: A Virtual Pilot Intervention for Family Caregivers of People with Dementia

ABSTRACT Objective To evaluate the feasibility and acceptability of a virtually delivered psychoeducational skill-building intervention for ADRD caregivers. Methods A single-arm, pre-posttest pilot study design was employed to evaluate the intervention. Four 90-min group-based weekly sessions were combined with four individual coaching sessions via Zoom. Intervention components covered topics designed to reduce caregiver stress and distress, and a VR experience to help caregivers understand dementia. Data was gathered via REDCap pre- and post-intervention and through post-intervention interviews via Zoom. Results Results (N = 20) from individual interviews, surveys, and treatment implementation strategies suggest strong feasibility and acceptability. Key change exploration indicated medium effect sizes and statistical significance in preparedness for caregiving (t(19) = 2.69, p = .015, d = 63), communication (t(19) = 2.45, p = .024, d = 0.55), and a medium effect size for the mindful attention awareness scale (t(19) = 0.48, p = (0.637, d = 0.54). Further, participants reported their perceptions of improvement in outcomes such as the ability to care, increased understanding of memory loss, and confidence. Conclusions Through Alzheimer’s Eyes is a feasible and acceptable intervention that blends technology with skill-building strategies to help caregivers manage their stress and distress regardless of their location. Clinical Implications There is potential for interventions including VR to assist family caregivers in managing caregiving challenges and improve well-being.

"Capable of much more": The effects of vocational training on caregiver expectations for neurodivergent dependents in Thailand.

Neurodivergence encompasses a spectrum of natural variations in neurological development, including autism, ADHD, and other expressions of cognitive diversity. Caregiver experiences while supporting their neurodivergent dependents critically influence the quality of life outcomes for neurodivergent dependents across life stages, including during the search for work. However, research on caregiver experiences during this stage remains scarce, especially within lesser studied developing contexts like Thailand. This study explored perspectives of Thai caregivers preparing neurodivergent dependents for employment through a focus group (n = 10) of pre-vocational training caregivers and interviews (n = 13) with post-training caregivers. Analysis revealed significant sociocultural factors introducing stigma that affected acceptance, diagnosis, interventions, and policy support. Both groups reported systemic barriers, doubts about future independence, and hopes to increase advocacy and inclusive attitudes. However, caregivers whose dependents had received the training showed marked shifts in their expectations for their dependents' success. Tailored vocational preparation helping dependents exhibit strengths may transform societal views on neurodiversity from deficiency to natural diversity and enable more meaningful, sustainable futures. These insights elucidate caregiver challenges and aspirations, which can better inform supportive research and interventions in Thailand and other non-Western locales.