OBJECTIVE: The aim of this study was to investigate the experiences of living with glioblastoma from the perspective of patients themselves as well as their closest relatives, focusing on the changes in the life situation and the need for support.
METHODS: Twenty-two semi-structured interviews were conducted with 12 patients (mean age 61 years, 7 male, 5 female) and 10 relatives (mean age 56 years, 3 male, 7 female). The relatives comprised of partners (n = 7), child (n = 1), sister (n = 1), or friend (n = 1). Questions focused on changes in the life situation and support needed to face these changes. Data was analyzed using inductive qualitative content analysis (QCA).
RESULTS: Living with glioblastoma dramatically changes the lives of both patients and relatives. Cognitive symptoms (e.g., speech and memory disturbances), deterioration of physical function (e.g., paresis), and psychological function (e.g., behavioral changes, anxiety) can lead to impaired family dynamics, social isolation, and fear of the future. Support from other family members, friends, and healthcare professionals is crucial. Timely, tangible, and easily available support from the healthcare system the entire disease trajectory is sought after, enabling individualized care with emotional support, clearer information, and faster feedback.
CONCLUSIONS: The changes in life situations faced by patients with glioblastoma and their closest relatives are dramatic and underline the importance of providing integrated care throughout the entire healthcare continuum, encompassing specialist neuro-oncological care, municipal support, and palliative care. Individualized support for both patients and relatives can enhance the sense of safety amid the chaos in their life situation.

BACKGROUND: We aimed to synthesize the qualitative evidence on the impacts of COVID-19-related restricted family presence policies from the perspective of patients, families, and healthcare professionals from neonatal (NICU), pediatric (PICU), or adult ICUs.
METHODS: We searched MEDLINE, EMBASE, Cochrane Databases of Reviews and Clinical Trials, CINAHL, Scopus, PsycINFO, and Web of Science. Two researchers independently reviewed titles/abstracts and full-text articles for inclusion. Thematic analysis was completed following appraising article quality and assessing confidence in the individual review findings using standardized tools.
RESULTS: We synthesized 54 findings from 184 studies, revealing the impacts of these policies in children and adults on: (1) Family integrated care and patient and family-centered care (e.g., disruption to breastfeeding/kangaroo care, dehumanizing of patients); (2) Patients, families, and healthcare professionals (e.g., negative mental health consequences, moral distress); (3) Support systems (e.g., loss of support from friends/families); and (4) Relationships (e.g., loss of essential bonding with infant, struggle to develop trust). Strategies to mitigate these impacts are reported.
CONCLUSIONS: This review highlights the multifaceted impacts of restricted visitation policies across distinct care settings and strategies to mitigate the harmful effects of these policies and guide the creation of compassionate family presence policies in future health crises.
BACKGROUND: https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=290263 .

BACKGROUND: Relatives of individuals with bipolar disorder (BD) are at higher risk of developing the disorder. Identifying brain alterations associated with familial vulnerability in BD can help discover endophenotypes, which are quantifiable biological traits more prevalent in unaffected relatives of BD (BD-RELs) than the general population. This review aimed at expanding our knowledge on endophenotypes of BD by providing an overview of resting-state functional magnetic resonance imaging (rs-fMRI) alterations in BD-RELs.
METHODS: A systematic search of PubMed, Scopus, and Web of Science was performed to identify all available rs-fMRI studies conducted in BD-RELs up to January 2024. A total of 18 studies were selected. Six included BD-RELs with no history of psychiatric disorders and 10 included BD-RELs that presented psychiatric disorders. Two investigations examined rs-fMRI alterations in BD-RELs with and without subthreshold symptoms for BD.
RESULTS: BD-RELs presented rs-fMRI alterations in the cortico-limbic network, fronto-thalamic-striatal circuit, fronto-occipital network, and, to a lesser extent, in the default mode network. This was true both for BD-RELs with no history of psychopathology and for BD-RELs that presented psychiatric disorders. The direct comparison of rs-fMRI alterations in BD-RELs with and without psychiatric symptoms displayed largely non-overlapping patterns of rs-fMRI abnormalities.
CONCLUSIONS: Small sample sizes and the clinical heterogeneity of BD-RELs limit the generalizability of our findings.
CONCLUSIONS: The current literature suggests that first-degree BD-RELs exhibit rs-fMRI alterations in brain circuits involved in emotion regulation, cognition, reward processing, and psychosis susceptibility. Future studies are needed to validate these findings and to explore their potential as biomarkers for early detection and intervention.

Family reactions to coming out can affect the mental health of individuals who disclose their sexual orientation or gender identity. Therefore, it is important to have an appropriate tool to assess them. The Perceived Parental Reactions Scale (PPRS) assessed perceived parental reactions to the disclosure of gay, lesbian, or bisexual sexual orientation by their children. We adapted the PPRS so that it can be answered by any individual belonging to a sexual or gender minority, and can be answered regarding any member of the family, not just parents. A total of 2627 individuals from Spain participated in this study, with a mean age of 31.59 (SD = 11.26). Participants completed the adapted PPRS questionnaire, now named the Family Reaction to Coming Out (FRCO). The FRCO assessed family reactions when disclosing their sexual orientation or gender identity. The majority of participants identified as cisgender men (47.5%) or cisgender women (44.9%), and as gay/lesbian (51.9%). A one-factor model emerged through exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). The FRCO displayed excellent internal consistency and demonstrated good levels of invariance for participants\' gender (male vs female vs nonbinary gender), family member\'s gender (male vs female), and type of family member (parents vs other family member). Supporting convergent validity, the FRCO has shown a positive correlation with fear of family reaction to coming out. These findings support the validity and reliability of the FRCO tool in assessing the reactions of any family member within the Spanish context.

UNASSIGNED: Hypoglycemia constitutes a communication barrier between youth with type 1 diabetes, their family members and health professionals. A narrative tool may contribute to a more effective communication.
UNASSIGNED: Semi-structured interviews with six open-ended questions using narrative techniques collect and analyze (thematic and comparative analysis) different ways of \"naming\" the lived experience of hypoglycemia.
UNASSIGNED: 103 participants, 40 with type 1 Diabetes aged 10-18 years (17 female), 63 relatives (40 female). Group 1 (G1), 10-14 years old (n = 21), Group 2 (G2), 15-18 years old (n = 19), Group 3 (G3) relatives, 30-59 years old. G3 was divided, G3.1: female (n = 42) and G3.2: male (n = 21).G1 and G2 presents greater attention to symptoms. G1 refers a greater need for help, G2 emphasizes autonomy. G2 and G3 describes better the medical protocol. G1 and G2 refer more topics such as \"discomfort\", \"frustration\", \"obligation\", \"difficulty in verbalizing\", G3 refers to \"gilt\", \"fear\" and \"responsibility\". G3.1 refer more \"symptoms\", \"responsibility\", \"fault\", \"incapacity\".
UNASSIGNED: A narrative tool enhances the singularity of a common experience, proving itself useful to adolescents, relatives, and healthcare professionals.
UNASSIGNED: In addition to gathering information that is usually acquired empirically, a narrative tool exposes knowledge gaps and may allow implementing intervention strategies.

OBJECTIVE: This study was conducted to determine stigma and attitudes in the relatives of patients with epilepsy and the factors affecting them.
METHODS: This descriptive and cross-sectional study was conducted with 173 relatives of patients with epilepsy who were admitted to the neurology outpatient clinic of a university hospital in Van Province, eastern Turkey, between April and December 2021. Individual information forms, the Epilepsy Stigma Scale Patient\'s Relative, and the Epilepsy Attitude Scale were used to collect the data.
RESULTS: The mean stigma score was 54.58 (standard deviation [SD] = 10.96), and the mean attitude score was 53.05 (SD = 8.14). A negative and significant correlation was found between stigma score and attitude score (r = -0.457, p < 0.001). It was found that stigma and attitude scores differed significantly in terms of education, hiding epilepsy, and the idea that epilepsy is related to spiritual thoughts (p < 0.05).
CONCLUSIONS: As a result of this study, it was found that the relatives of patients with epilepsy were generally moderately stigmatized (64.8 %) and had moderate attitudes toward epilepsy. As the stigma increased in the participants, it was determined that they showed more negative attitudes toward epilepsy. The results indicated that relatives of patients with epilepsy who had one or more seizures per month experienced more stigma, and relatives of patients with epilepsy who did not take their medication regularly exhibited a more negative attitude toward epilepsy.

OBJECTIVE: Family members of Intensive Care Unit (ICU) patients can experience mental health difficulties. These are collectively described as Post Intensive Care Syndrome-Family (PICS-F). There are no standardised outcome measures to benchmark the impact of PICS-F. This scoping review aimed to map and characterise interventions, outcomes, and outcome instruments related to PICS-F.
METHODS: Eight databases were searched in June 2023: Pubmed, CINAHL, Ovid Medline, EMBASE, PsycInfo, AMED, Emcare and Cochrane. The grey literature was also searched. Studies published after 2012 related to PICS-F were included. Search strategy included: (Population) family members of adult ICU patients, (Concept) PICS-F, (Context) ICU settings. Frequency analysis of outcomes was performed, and instruments were mapped to describe the characteristics.
RESULTS: Of the identified 4848 records, 46 papers representing 44 unique studies met the inclusion criteria and were retained for analysis. In total, 8008 family members were represented across 15 countries in four continents worldwide. The number of studies reporting PICS-F interventions increased rapidly over the past 12 years and were performed in ICUs treating mixed conditions. Studies were randomised control trials (n = 33), before-and-after design (n = 6) and non-randomised trials (n = 5). A total of 18 outcome instruments were used measuring predominantly anxiety, with complicated grief measured only once. The identified instruments were mostly validated for clinical and disease specific populations but not validated among relatives of ICU patients.
CONCLUSIONS: There is a plethora of instruments measuring PICS-F outcomes. No core outcome set is currently available for PICS-F. To reduce heterogeneity of how PICS-F is measured, a core outcome set with validated measurements is recommended to allow benchmarking and to document the impact of PICS-F interventions.
CONCLUSIONS: Recognising PICS-F symptoms and understanding how to assess them could help clinicians to develop interventions to improve family outcomes. Validated instruments are needed to evaluate these interventions.

OBJECTIVE: To identify and map the evidence on interventions facilitating the involvement of relatives of patients with an acquired brain injury (ABI) or a malignant brain tumour (MBT).
BACKGROUND: An ABI or a MBT are severe diseases that have profound impact on the lives of patients and their relatives. The well-being of the patient may be deteriorated, and relatives may experience a new role and changing caregiving tasks. Involvement of relatives seems essential, and there is a need for identifying interventions facilitating the involvement.
METHODS: Scoping review.
METHODS: The Joanna Briggs Institute methodology was used in this review and the review was reported in accordance with the PRISMA extension for scoping reviews.
METHODS: The literature search was conducted in MEDLINE, Embase, CINAHL and Cochrane Library. Reference lists of included studies, Google Scholar and Web of Science were also searched.
RESULTS: In total, 46 studies were included of which 36 (78%) involved patients with stroke. Median duration of study interventions were 8 weeks, and nurses were involved as providers of the intervention in 23 (50%) studies. Thirty (65%) studies used a multicomponent intervention. Thirty-five unique outcomes were identified using 60 unique outcome measurements.
CONCLUSIONS: Interventions facilitating the involvement of relatives differed importantly in key characteristics of study interventions, and in relation to the context in which they were used. There was no consensus regarding choice of outcomes and outcome measurements. Our results highlight the complexity of interventions in this field.
UNASSIGNED: To our knowledge this is the first scoping review examining interventions facilitating the involvement of relatives of patients with an acquired brain injury or a malignant brain tumour. This review suggests a clear definition of \'involvement\' in future research and there is a need of development of a core outcome set for use in interventions facilitating the involvement.
UNASSIGNED: The scoping review was reported in accordance with the PRISMA extension for scoping reviews.
UNASSIGNED: The authors decided to undertake this scoping review without patient and public contribution. However, the protocol was published prior to review conduct and available to the public but we did not receive any comments on it.

UNASSIGNED: This study was conducted on the occasion of the parricide in Bolzano (South Tyrol, Italy) in January 2021. The psychological impact of parricide on the general population and on mental health professionals has scarcely been investigated to the present day. Studies on stigmatization show differences between various groups. The aim was to analyze the emotional reactions to the parricide and the stigmatization of persons with mental disorders in the South Tyrolian population.
UNASSIGNED: In September 2022, 121 mental health professionals of the Department of Psychiatry in Bolzano were surveyed using an online questionnaire. In addition, from January to March 2023, the general population of South Tyrol was invited to take part in the survey through an online-link and was divided into three groups: 267 persons with mental health problems, 855 relatives and 1,019 persons with no direct or indirect contact to people with mental problems. The validated Reported and Intended Behavior Scale (RIBS) was used together with questions on the emotional reactions to the parricide and the perceived dangerousness of psychiatric patients. Descriptive statistics, one-way Anovas as well as regressions were carried out.
UNASSIGNED: All groups experienced sadness the most. Relatives experienced more sadness and anger than the other groups. Over 80% of the professionals stated that psychiatric patients were not at greater risk of committing parricide. The population with no contact rated the risk higher than those affected and had the lowest level of openness (RIBS). There were no differences between genders, but there were age differences, with younger people being more stigmatizing. The results suggest that personal contact, appropriate information, and education are associated with less stigmatization.

BACKGROUND: Knowledge about caregiver strain among relatives of out-of-hospital cardiac arrest (OHCA) survivors is limited. Thus, the objectives were to i) describe differences in self-reported mental well-being, mental health, and caregiver strain at different time points (1-5 years) post-OHCA and ii) investigate characteristics associated with caregiver strain.
METHODS: A national cross-sectional survey (DANCAS) from October 2020 to March 2021 with OHCA survivors and their closest relatives. The relative survey included the WHO-5 Well-being Index (WHO-5), the Hospital Anxiety and Depression Scale (HADS) and the Modified Caregiver Strain Index (M-CSI). Differences in scores between time groups were explored using descriptive statistics. Associations between characteristics and caregiver strain were investigated with multivariable logistic regression models, presented as odds ratios (OR) with 95% confidence intervals (CI), adjusted for gender, age, education status, relative affiliation, and time after OHCA.
RESULTS: Of 561 relatives, 24% (n = 137) experienced caregiver strain, with no significant differences in the relatives\' mental well-being, mental health, or caregiver strain with time since OHCA. In the adjusted analyses, older age (OR 0.98 95% CI 0.96;0.99) and several self-reported outcomes, including reduced mental well-being (WHO-5 OR 7.27 95% CI 4.86;11.52), symptoms of anxiety (HADS-A OR 6.01 95% CI 3.89;9.29) and depression (HADS-D OR 15.03 95% CI 7.33;30.80) were significantly associated with worse caregiver strain.
CONCLUSIONS: Nearly one-quarter of relatives of OHCA survivors experience caregiver strain, with this proportion remaining unchanged with time. Several outcomes were associated with caregiver strain, emphasising the need to identify relatives at greater risk of burden following OHCA.