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Siblings of children with chronic disorders are at increased risk of experiencing family communication problems and poorer mental health. We assessed initial feasibility, acceptability, and outcomes of SIBS; a manual-based group intervention for siblings and parents of children with chronic disorders, aiming to improve parent-sibling communication and sibling mental health. Ninety-nine siblings aged 8–16 years (M = 11.5 years, SD = 2.0; 54.5% girls) and parents (63.6% mothers) of children with chronic disorders participated in three separate group sessions for siblings and parents and two joint sessions with integrated sibling-parent dialogues. We assessed participant satisfaction post-intervention and checked for group leader manual adherence. We measured the following outcomes at baseline, three, and six months post-intervention in an open trial: (1) parent-sibling communication quality; (2) sibling emotional and behavioral problems; (3) sibling adaptation to the disorder; and (4) sibling disorder knowledge. Using growth curve modeling, we found significant improvement in parent-sibling communication quality (p = 0.001), emotional and behavioral problems (p = 0.009), adaptation to the disorder (p = 0.003), and disorder knowledge (p = 0.000) from baseline to follow-up (effect sizes d = 0.22 to 0.64). Improvement in sibling-reported emotional and behavioral problems and adaptation to the disorder was partly explained by communication quality. User satisfaction was high and manual adherence was good. Our evaluation yields support for the SIBS intervention, with initial evidence of acceptability, feasibility, and beneficial outcomes. Our study suggests targeting parent-sibling communication may be a beneficial way of improving siblings’ mental health.HighlightsSIBS is a novel five-session intervention for siblings as next of kin.An open trial showed beneficial sibling outcomes after participating in SIBS.Both siblings and parents reported high satisfaction with SIBS.Involving parents actively may be key to sibling interventions.Targeting parent-child communication may represent useful sibling support.

Background Involving next of kin in psychiatric care has been shown to significantly enhance the recovery process of the person in treatment as well as the wellbeing of the next of kin and aligns with clinical guidelines. However, despite broad recommendations, their participation remains inconsistent, and many next of kin report dissatisfaction with their involvement. Research predominantly focuses on psychiatric staff perspectives, leaving a gap in understanding how next of kin perceive their interactions with psychiatric professionals and institutions. Methods This study is part of the participatory-collaborative research project “PazAng,” investigating the barriers and opportunities for systematic next-of-kin involvement in German psychiatric care. We conducted 15 guided semi-structured interviews with next of kin, and analyzed them using Reflexive Thematic Analysis. To ensure diverse perspectives, the participatory approach included both researchers with lived experience as next of kin and those without such experience. Results We analyzed four major thematic fields shaping the experiences of next of kin in psychiatric care: “Feeling rebuffed vs. welcomed,” “Invisibility vs. feeling acknowledged,” “(Repeated) Powerlessness vs. Agency,” and “Paradoxical Assignment of Responsibility vs. Relief.” Some positive experiences were reported when staff actively included next of kin, provided triangulating communication, and facilitated collaborative discussions. However, such cases were the exception rather than the norm. The findings underscore the urgent need for a cultural shift towards greater inclusion and recognition of next of kin in psychiatric care. Conclusion A systematic change in psychiatric care is required to facilitate meaningful next-of-kin participation. This includes clear institutional policies, more focus on relational aspects, and a redefinition of participation beyond caregiving responsibilities. A more proactive, inclusive approach to next of kin could enhance support for both individuals in treatment and their next of kin while improving overall psychiatric care outcomes.

Background Primary health care has been central to achieving universal health coverage. In Norway, there has been increased pressure on primary care services in recent years. Patient complaints offer key insights into care quality, and qualitative analysis of patient complaints can help healthcare professionals reflect on and improve their practices. The aim of this study is to provide an understanding of negative experiences with primary care in Norway, as expressed in complaints to the Health and Social Services Ombudsman (Ombudsman). Methods An explorative descriptive qualitative design was employed. Document analysis was used to examine earlier complaints. A total of 221 complaints were analysed via reflexive thematic analysis. The participants consisted of a sample of patients and next of kin who made complaints regarding primary care services to the Ombudsman in Norway in 2019. Results Four themes were developed through thematic analysis: 1) the services patients received did not align with their perceived needs; 2) patients experienced disrupted transitions between healthcare services; 3) patients and next of kin encountered substandard case handling; and 4) insufficient services placed a heavy burden on next of kin. These findings were integrated to a patient-centred framework to provide structure and make them more accessible to healthcare providers. Conclusions This study highlights the challenges faced by patients and their next of kin related to Norwegian primary care services, pointing to a gap between the expected quality of healthcare services and the services received and to nudging next of kin to provide informal care.

Autism and autistic traits are risk factors for suicidal behaviour. To explore the prevalence of autism (diagnosed and undiagnosed) in those who died by suicide, and identify risk factors for suicide in this group. Stage 1: 372 coroners' inquest records, covering the period 1 January 2014 to 31 December 2017 from two regions of England, were analysed for evidence that the person who died had diagnosed autism or undiagnosed possible autism (elevated autistic traits), and identified risk markers. Stage 2: 29 follow-up interviews with the next of kin of those who died gathered further evidence of autism and autistic traits using validated autism screening and diagnostic tools. Stage 1: evidence of autism (10.8%) was significantly higher in those who died by suicide than the 1.1% prevalence expected in the UK general alive population (odds ratio (OR) = 11.08, 95% CI 3.92-31.31). Stage 2: 5 (17.2%) of the follow-up sample had evidence of autism identified from the coroners' records in stage 1. We identified evidence of undiagnosed possible autism in an additional 7 (24.1%) individuals, giving a total of 12 (41.4%); significantly higher than expected in the general alive population (1.1%) (OR = 19.76, 95% CI 2.36-165.84). Characteristics of those who died were largely similar regardless of evidence of autism, with groups experiencing a comparably high number of multiple risk markers before they died. Elevated autistic traits are significantly over-represented in those who die by suicide.

BackgroundPolicies for next-of-kin (NOK) notification and disposition of remains surrounding death are unclear across the United States’ (US) carceral systems. The goal of this study was to collect data on carceral system policies pertaining to NOK notification and disposition of remains for individuals who are incarcerated. We collected publicly available operational policies for the Federal Bureau of Prisons, Immigration and Customs Enforcement, 50 state prison systems, and the Washington D.C. jail for a total of 53 systems.ResultsApproximately 70% of systems had available policies on NOK notification and disposition of remains. Few systems had information on time constraints for NOK notification, notifying parties or designated contacts person, and ultimate disposition of unclaimed remains. Several systems had no accessible policies.ConclusionsAcross the US, carceral systems vary in policies for notifying NOK after the death of an incarcerated individual and their processes for the disposition of remains. Carceral and health systems should work towards standardization of policies on communication and disposition of remains after death of an individual who is incarcerated to work towards equity.

Background The dorsal raphe nucleus (DRN) is the primary source of serotonergic projections to supratentorial structures. We and others have shown that it is selectively vulnerable to tau pathology in both human and mouse models of early AD. Although well characterized in mice, the neurochemical anatomy of the human DRN, and in particular the role of Vesicular glutamate transporter‐3 (VGLUT3)‐expressing neocortical projection neurons in tau pathology, remains unclear. Method Post‐mortem human brain tissue was obtained from previously consented cases stored in the Iowa Neuropathology Resource Laboratory. Next of kin provided consent for research use of tissue. Sections were processed, embedded in paraffin, and sectioned in the usual fashion. Tyrosine hydroxylase (TH), tryptophan hydroxylase 2 (TPH2), and phosphorylated tau (AT8) were visualized by immunofluorescence, while VGLUT3 transcripts were identified by RNA in situ bybridization. Imaging was done using a Cytation5 platform with downstream analysis using MATLAB and R. Result We found that, similar to mice, the human dorsal raphe has both VGLUT3‐positive and –negative serotonergic neurons. Unlike mice however, in the human DRN, these are not anatomically separate, and the proportion of TPH2 neurons that are VGLUT3 appears to be higher than in mice. In patients with DRN tau aggregates, these appear to selectively affect TPH2+/VGLUT3+ neurons. Conclusion Serotonergic neurons in the dorsal raphe express high levels of VGLUT3, with an anatomic distribution differing from that seen in mice, and these neurons appear to be selectively vulnerable to tau pathology.

Background The population of Europe is ageing and becoming more ethnically diverse due to migration. Finding suitable long-term caring arrangements for older immigrants in Europe has been one of healthcare policymakers’ concerns in the last decade. However, relatively few older people with an immigrant background live in long-term care facilities, and many prefer to be cared for by their family members. Little is known about immigrant family caregivers’ experiences of caring for older family members and the support they need while providing care. This study aims to synthesize the qualitative literature exploring the experiences of individuals caring for older family members with immigrant backgrounds from Africa, Asia and South America living in Europe. Methods We searched the electronic databases Medline Ovid, Embase Ovid, PsycInfo Ovid, SocIndex EBSCOhost, CINAHL EBSCOhost, Scopus, Social Care Online, ASSIA ProQuest, and Google Scholar for original, peer reviewed research articles, published in English from 2011 to 2022. The seven-step interpretive methodology in meta-ethnography developed by Noblit and Hare (1988) was followed for qualitative synthesis. Results After assessing 4155 studies for eligibility criteria, 11 peer-reviewed articles were included in this review. The qualitative synthesis of these included articles resulted in four main themes: strong care norms for parents, the moral dilemma of continuing care, uneven care sharing, and the use of formal care services. Conclusions Caregiving dynamics are changing, both in terms of motivations and approaches to caregiving. Furthermore, there are gender disparities in the distribution of caregiving duties, particularly with women carrying the more significant burden of care. The care burden is further exacerbated by the lack of culturally sensitive formal services complementing the care needs of the ageing immigrants and their family caregivers. Therefore, those searching for alternatives to informal care should be met with appropriate health and care services in terms of language, culture, religion, and lifestyle, delivered in a non-judgmental way.

Background APOE‐ε4 carriers and individuals with unfavorable social determinants of health (SDH) profiles have an increased risk for Alzheimer's Disease (AD). However, the modification effect of SDH on the associations of APOE‐ε4 with AD pathology or AD pathology with AD dementia symptoms is yet to be understood, particularly in low‐ to middle‐income countries where social disparities play an important role in AD burden and might interact with genetic variants. Method This cross‐sectional study used data from the Biobank for Aging Studies. Individuals aged 50 years or older and whose next of kin (NOK) had at least a weekly contact with the deceased were included. Other causes of dementia besides AD pathology were excluded (n = 196). Individuals were classified into APOE‐ε4 carriers (at least one ε4 allele) and non‐carriers. The individual's NOK provided information on SDH. AD neuropathological changes (ADNC) were evaluated following international criteria using the CERAD and Braak stagings. Clinical Dementia Rating ‐ Sum of Boxes (CDR‐SB) was used to assess the extent of AD symptoms. Confirmatory factor analysis was conducted to create an SDH general factor. Logistic and linear regressions were used to investigate the associations of APOE‐ε4 with AD pathology and AD pathology with AD symptoms, respectively. Interactions of the SDH factor with APOE‐ε4 and AD pathology were tested for both associations. SDH‐profile‐stratified (favorable vs unfavorable SDH profiles based on the SDH factor's median) analyses were conducted for significant interactions. Result In 1,021 individuals, the mean (SD) age was 74.2(12.6) years old, 51.2% were women, and 35.1% were Black/Brown. The association of APOE‐ε4 genotype with AD pathology was not modified by the SDH factor (p = 0.264), while the association of AD pathology with AD symptoms was modified by the SDH factor (p = 0.001). In stratified analysis, the association of AD pathology with AD symptoms was stronger in the unfavorable (β=8.42; 95%CI=7.44, 9.39; p <0.001) compared to the favorable SDH group (β=7.90; 95%CI=7.04, 8.77; p <0.001). Conclusion SDH did not modify the association between APOE‐ε4 and AD pathology, while it modified the expression of dementia in participants with AD pathology. This association was stronger in individuals with unfavorable compared to favorable SDH profile.

Background The atherosclerotic plaque in carotid arteries has been associated with dementia. Clinic radiological studies in older adults suggest that the composition of atherosclerotic plaque in the carotid artery can predict vascular dementia (VD) or mixed dementia. The proposed study aims to assess components of atherosclerotic plaques in the carotid arteries, particularly concerning cerebrovascular lesions using racially diverse autopsy samples. Method We used data from the Biobank for Aging Studies at the University of São Paulo Medical School. We included participants aged 50 years or older at the time of death with a post‐mortem interval of less than 24 hours and a next of kin who had at least weekly contact with the deceased (n = 505). The plaque composition was evaluated using the Atherosclerotic Plaque Analyzer (APA) software. Cerebrovascular lesions included lacunar infarcts, hyaline arteriolosclerosis, and cerebral amyloid angiopathy evaluated microscopically in 13 samples areas. Logistic regression models adjusted for sociodemographic and clinical variables were used to investigate the associations between plaque composition and cerebrovascular deceased. Results After the exclusions for missing data, 193 participants were included (mean age 79.4±10.0 years, 51.3% were women, and 61% were White) (Table 1). A higher percentage of lipid deposition in the plaque was associated with higher odds of cerebral amyloid angiopathy (OR = 1.01, 95% CI = 1.03; 1.27, p = 0.007). We found no association between the other plaque components and cerebrovascular diseases (Table 3). Conclusion In an autopsy study, the deposition of lipids in the carotid atheroma plaque was associated with cerebral amyloid angiopathy. Further autopsy studies in larger samples are needed to confirm our findings.

The digitalization of public and health sectors worldwide is fundamentally changing health systems. With the implementation of digital health services in health institutions, a focus on digital health literacy and the use of digital health services have become more evident. In Denmark, public institutions use digital tools for different purposes, aiming to create a universal public digital sector for everyone. However, this digitalization risks reducing equity in health and further marginalizing citizens who are disadvantaged. Therefore, more knowledge is needed regarding patients' digital practices and experiences with digital health services. This study aims to examine digital practices and experiences with public digital health services and digital tools from the perspective of patients in the neurology field and address the following research questions: (1) How do patients use digital services and digital tools? (2) How do they experience them? We used a qualitative design with a hermeneutic approach. We conducted 31 semistructured interviews with patients who were hospitalized or formerly hospitalized at the department of neurology in a hospital in Denmark. The interviews were audio recorded and subsequently transcribed. The text from each transcribed interview was analyzed using manifest content analysis. The analysis provided insights into 4 different categories regarding digital practices and experiences of using digital tools and services in health care systems: social resources as a digital lifeline, possessing the necessary capabilities, big feelings as facilitators or barriers, and life without digital tools. Our findings show that digital tools were experienced differently, and specific conditions were important for the possibility of engaging in digital practices, including having access to social resources; possessing physical, cognitive, and communicative capabilities; and feeling motivated, secure, and comfortable. These prerequisites were necessary for participants to have positive experiences using digital tools in the health care system. Those who did not have these prerequisites experienced challenges and, in some cases, felt left out. Experiences with digital practices and digital health services are complex and multifaceted. Engagement in digital practices for the examined population requires access to continuous assistance from their social network. If patients do not meet requirements, digital health services can be experienced as exclusionary and a source of concern. Physical, cognitive, and communicative difficulties might make it impossible to use digital tools or create more challenges. To ensure that digitalization does not create inequities in health, it is necessary for developers and institutions to be aware of the differences in digital health literacy, focus on simplifying communication with patients and next of kin, and find flexible solutions for citizens who are disadvantaged.