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1.
Fam Process ; 2024 Aug 08.
Artigo em Inglês | MEDLINE | ID: mdl-39118239

RESUMO

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.

2.
Diabetol Int ; 15(3): 550-561, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-39101166

RESUMO

Objective: 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. Methods: 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. Results: 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". Conclusions: A narrative tool enhances the singularity of a common experience, proving itself useful to adolescents, relatives, and healthcare professionals. Practice implications: In addition to gathering information that is usually acquired empirically, a narrative tool exposes knowledge gaps and may allow implementing intervention strategies.

3.
J Psychiatr Res ; 178: 33-40, 2024 Aug 03.
Artigo em Inglês | MEDLINE | ID: mdl-39121705

RESUMO

Verbal fluency (VF) has been proposed as a putative neurocognitive endophenotype in schizophrenia (SZ) and bipolar disorder (BD). However, this hypothesis has not been examined using a longitudinal family approach. We conducted a five-group, comparative study. The sample comprised 323 adult participants, including 81 BD patients, 47 unaffected relatives of BD BD-Rel), 76 SZ patients, 40 unaffected relatives of SZ (SZ-Rel), and 79 genetically unrelated healthy controls (HC). All subjects were assessed twice with semantic VF (sem-VF) and phonological VF (ph-VF) tests over a 2-year follow-up period. ANCOVAs controlling for age and years of education were used to compare performance across groups. Patients with SZ and BD and their unaffected relatives showed sem-VF and ph-VF deficits at baseline, which persisted over time (all, p < 0.05). Moreover, BD-Rel showed an intermediate performance between SZ and HC. A repeated-measures ANOVA revealed no significant differences in the between-group trajectories comparison (p > 0.05). Our findings support that VF may represent a neurocognitive endophenotype for SZ and BD. Further longitudinal, family studies are warranted to confirm this preliminary evidence.

4.
Psychiatry Res ; 340: 116112, 2024 Jul 29.
Artigo em Inglês | MEDLINE | ID: mdl-39121759

RESUMO

Individuals with schizophrenia (SZ) or bipolar disorder (BP) display cognitive impairments, while their first-degree relatives perform at an intermediate level between the patient groups and controls. However, the environmental impact of having an ill relative likely varies with the type of kinship and some studies suggest that offspring may be particularly disadvantaged. The present study aimed to investigate the relationship between parent and child cognition in parents with SZ or BD and their 7-year-old offspring. A population-based cohort of 522 children (parental SZ, n = 202; parental BP, n = 120; controls, n = 200) and their parents underwent the same assessment battery covering a wide range of cognitive functions. We used Bayesian statistics to model performance. We found that performance on non-verbal tests was better in offspring than parents with SZ or BP, using the controls as reference. However, for verbal tests, there was little to no evidence for this pattern or even some evidence for the opposite in the BP group: relatively better performance in parents than offspring. The findings suggest that the offspring of parents with SZ or BP may be particularly disadvantaged in verbal abilities. Future studies will show whether this pattern persists throughout development.

5.
Gigascience ; 132024 Jan 02.
Artigo em Inglês | MEDLINE | ID: mdl-39110621

RESUMO

BACKGROUND: The economic importance of the globally distributed Brassicaceae family resides in the large diversity of crops within the family and the substantial variety of agronomic and functional traits they possess. We reviewed the current classifications of crop wild relatives (CWRs) in the Brassicaceae family with the aim of identifying new potential cross-compatible species from a total of 1,242 species using phylogenetic approaches. RESULTS: In general, cross-compatibility data between wild species and crops, as well as phenotype and genotype characterisation data, were available for major crops but very limited for minor crops, restricting the identification of new potential CWRs. Around 70% of wild Brassicaceae did not have genetic sequence data available in public repositories, and only 40% had chromosome counts published. Using phylogenetic distances, we propose 103 new potential CWRs for this family, which we recommend as priorities for cross-compatibility tests with crops and for phenotypic characterisation, including 71 newly identified CWRs for 10 minor crops. From the total species used in this study, more than half had no records of being in ex situ conservation, and 80% were not assessed for their conservation status or were data deficient (IUCN Red List Assessments). CONCLUSIONS: Great efforts are needed on ex situ conservation to have accessible material for characterising and evaluating the species for future breeding programmes. We identified the Mediterranean region as one key conservation area for wild Brassicaceae species, with great numbers of endemic and threatened species. Conservation assessments are urgently needed to evaluate most of these wild Brassicaceae.


Assuntos
Brassicaceae , Conservação dos Recursos Naturais , Produtos Agrícolas , Filogenia , Brassicaceae/genética , Brassicaceae/classificação , Produtos Agrícolas/genética , Fenótipo , Genótipo
6.
Front Endocrinol (Lausanne) ; 15: 1411686, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39188918

RESUMO

Introduction: The detection of pancreatic autoantibodies in first-degree relatives of patients with type 1 diabetes (T1D) is considered a risk factor for disease. Novel available immunotherapies to delay T1D progression highlight the importance of identifying individuals at risk who might benefit from emerging treatments. The objective was to assess the autoimmunity in first-degree relatives of patients with T1D, estimate the time from autoimmunity detection to the onset of clinical diabetes, and identify the associated risk factors. Methods: Retrospective multicenter study of 3,015 first-degree relatives of patients with T1D recruited between 1992 and 2018. Pancreatic autoantibodies (IAA, GADA, IA2A, and ZnT8A) were determined by radioimmunoassay, starting the analyses at diagnosis of the proband. All those with positive autoimmunity and normal fasting blood glucose without clinical symptoms of diabetes were followed up in the study. The progression rate to T1D was assessed according to sex, relationship with the proband, age at autoimmunity detection, type/number of autoantibodies, and HLA-DRB1 genotype. Cox proportional-hazard models and Kaplan-Meier survival plots were used for statistical analyses. Results: Among the relatives, 21 progenitors [43.7 years (IQR: 38.1-47.7)] and 27 siblings [7.6 years (IQR: 5.8-16.1)] had positive autoantibodies. Of these, 54.2% (95% CI: 39.2%-68.6%) developed T1D (age at autoimmunity detection 11 months to 39 years) in a median of 5 years (IQR: 3.6-8.7; ranged from 0.9 to 22.6 years). Risk factors associated with faster progression to T1D were multiple autoimmunity and <20 years at autoimmunity detection. Younger relatives (<20 years) with multiple autoantibodies had a 5-year cumulative risk of developing diabetes of 52.9% (95% CI: 22.1%-71.6%) and a 20-year risk of 91.2% (95% CI: 50.5%-98.4%). The 20-year risk decreased to 59.9% (95% CI: 21.9%-79.5%) if only one risk factor was met and to 35.7% (95% CI: 0.0%-66.2%) if the relative was older than 20 years with one autoantibody. Conclusions: In first-degree relatives with autoimmunity, the time to progression to T1D is faster in children and adolescents with multiple autoantibodies. Young adults are also at risk, which supports their consideration in screening strategies for people at risk of developing T1D.


Assuntos
Autoanticorpos , Diabetes Mellitus Tipo 1 , Progressão da Doença , Humanos , Diabetes Mellitus Tipo 1/epidemiologia , Diabetes Mellitus Tipo 1/imunologia , Diabetes Mellitus Tipo 1/genética , Diabetes Mellitus Tipo 1/diagnóstico , Feminino , Masculino , Adulto , Autoanticorpos/sangue , Autoanticorpos/imunologia , Estudos Retrospectivos , Pessoa de Meia-Idade , Fatores de Risco , Criança , Adolescente , Família , Autoimunidade , Adulto Jovem , Pré-Escolar , Seguimentos , Predisposição Genética para Doença
8.
Support Care Cancer ; 32(9): 599, 2024 Aug 21.
Artigo em Inglês | MEDLINE | ID: mdl-39167224

RESUMO

PURPOSE: 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. CONCLUSION: 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.


Assuntos
Neoplasias Encefálicas , Família , Glioblastoma , Apoio Social , Humanos , Glioblastoma/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Família/psicologia , Neoplasias Encefálicas/psicologia , Isolamento Social/psicologia , Pesquisa Qualitativa , Adulto , Autonomia Pessoal , Entrevistas como Assunto
9.
Mol Breed ; 44(8): 54, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-39148502

RESUMO

Utilization of crop wild relatives of wheat can be very effective in building the genetic diversity to cater to the evolving strains of disease pathogens. Aegilops speltoides is a rich source of rust resistance genes however transferring those to wheat genome can be tedious due to co-transfer and preferential transmission of undesirable genes causing gametocidal activity. Such an unholy association was observed in Triticum aestivum-Ae. speltoides derivative line Sel. 2427 which possess the broad-spectrum leaf rust seedling resistance gene (LrS2427). Molecular analysis based on 35 K wheat breeder's array revealed the maximum percentage of Ae. speltoides genome introgression on homoeologous group 2. In situ hybridization studies revealed the presence of S genome in Sel. 2427, showing six translocations on four chromosomes. Karyotyping using repetitive probe (AAG)6 revealed that the two chromosomes involved are 2D and 2B. Genic regions causing gametocidal activity were identified by dissecting it into component traits and QTLs on 2D and 2B chromosomes were revealed in case of the trait seed shrivelling index. To break the inadvertent association of LrS2427 with gametocidal genes, F1(Agra Local X Sel. 2427) seeds were irradiated with gamma rays and stable leaf rust resistant mutants lacking gametocidal activity were developed. These mutants showed resistance to different races of leaf rust pathogen and showed superior agronomic performance as well. These mutants could be a great resource in wheat improvement for utilization of the leaf rust resistance gene LrS2427 without any yield penalty. Supplementary Information: The online version contains supplementary material available at 10.1007/s11032-024-01491-8.

10.
DNA Res ; 2024 Aug 26.
Artigo em Inglês | MEDLINE | ID: mdl-39185728

RESUMO

Wild Malus species flourished in North America long before Europeans introduced domesticated apples. Malus coronaria and M. ioensis are native to the mid-western and eastern USA, while M. angustifolia and M. fusca grow in the southeast and west, respectively. They offer disease resistance, climate and soil adaptability, and horticultural traits for apple breeding. However, their utilization remains limited due to insufficient genomic resources and specific genetics. We report high-quality phased chromosome-scale assemblies of M. coronaria and M. ioensis, generated using long-read and conformation capture sequencing. Phylogenetic and synteny analysis indicated high relatedness between these two genomes and previously-published genome of M. angustifolia, and lower relatedness with M. fusca. Gene family-based pangenome of North American Malus identified 60,211 orthogroups containing 340,087 genes. Genes involved in basic cellular and metabolic processes, growth, and development were core to the existence of these species, whereas genes involved in secondary metabolism, stress response, and interactions with other organisms were accessory and are likely associated with adaptation to specific environments. Structural variation hotspots were mostly overlapping with high gene density. This study offers novel native North American Malus genome resources that can be used to identify genes for apple breeding and understand their evolution and adaptation.

11.
J Affect Disord ; 365: 321-331, 2024 Aug 12.
Artigo em Inglês | MEDLINE | ID: mdl-39142577

RESUMO

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. LIMITATIONS: 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.

12.
Plants (Basel) ; 13(15)2024 Jul 28.
Artigo em Inglês | MEDLINE | ID: mdl-39124209

RESUMO

The Arabian Peninsula, with its rugged mountains, wadis, alluvial plains, sand dune deserts, and diverse coastlines, spans over 3 million km2. The Peninsula is situated at the crossroads of Africa and Asia and is a meeting point for diverse biogeographic realms, including the Palearctic, Afrotropical, and Indomalayan regions. This convergence of biogeographic zones has resulted in a remarkably diverse flora and fauna, which is adapted to the harsh and varied climates found throughout the Peninsula. Each of the countries of the Arabian Peninsula are biologically diverse and unique in their own right, but Yemen, Saudi Arabia, and Oman are the most diverse in terms of their landforms and biological diversity. The mountainous regions support a cooler and more moderate climate compared to the surrounding lowlands, thus forming unique ecosystems that function as refugia for plant and animal species, and have a high endemism of plant species. The desert ecosystems support a variety of lifeforms that are specially adapted to an extreme arid climate. Due to its long history of human habitation and subsistence agriculture, particularly in the mountainous areas, the Arabian Peninsula possesses unique crop varieties adapted to extreme arid climates, making them important genetic resources for the future in the face of climate change. The Arabian Peninsula, though rich and diverse in its biological diversity, has been greatly affected by human activities, especially in the last 50 years, including urbanization, habitat destruction, overgrazing, and climate change, which pose significant threats to the biodiversity of the region. This review presents the biogeography and background of conservation efforts made in the countries in the Arabian Peninsula and gives the progress made in botanical research and conservation practices throughout the Peninsula.

13.
Seizure ; 121: 64-69, 2024 Jul 28.
Artigo em Inglês | MEDLINE | ID: mdl-39089140

RESUMO

PURPOSE: 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). CONCLUSION: 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.

14.
BMC Health Serv Res ; 24(1): 936, 2024 Aug 15.
Artigo em Inglês | MEDLINE | ID: mdl-39148067

RESUMO

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. CONCLUSION: 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. REGISTRATION: https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=290263 .


Assuntos
COVID-19 , Estado Terminal , Família , Pesquisa Qualitativa , Humanos , COVID-19/epidemiologia , COVID-19/psicologia , Família/psicologia , Estado Terminal/psicologia , Cuidados Críticos/psicologia , SARS-CoV-2 , Visitas a Pacientes/psicologia , Pandemias , Pessoal de Saúde/psicologia , Adulto , Unidades de Terapia Intensiva
15.
Z Evid Fortbild Qual Gesundhwes ; 188: 48-57, 2024 Aug.
Artigo em Alemão | MEDLINE | ID: mdl-39043519

RESUMO

BACKGROUND: Established as health insurance benefit in 2007, Specialized Palliative Home Care (SPHC) has been continuously expanded. At the same time, health policy initiatives intended to promote general outpatient palliative care. In comparison to urban centers, the development of palliative care networks in rural areas appears to be more difficult. In addition, there is an increasing shortage of family doctors in primary care. Family members play a key role in the home care for seriously ill patients. This paper therefore investigated the experiences of relatives with the end-of-life (EoL) care for family members with life-limiting chronic diseases in more rural regions. The aim was to determine aspects that, from the relatives' point of view, are essential for optimizing EoL care. METHODS: Qualitative after-death interviews with relatives in two districts were conducted in the first six months of 2019, who were recruited by the deceased patients' family doctor. Relatives (age ≥18 years) of patients who died in 2018 were included. The interviews were digitally recorded, transcribed and analyzed using content analysis. RESULTS: In the first half of 2019, 28 after-death interviews were conducted with 30 relatives (77% female, age: 32 to 83 years) from rural (n=8) and urban communities (n=22) in two Lower Saxonian counties. They were mostly in a partnership or parent-child relationship with the deceased person. The central categories and needs that emerged in the analysis were: (1) communication about dying and death, (2) information and enabling, (3) support of and relief for relatives, and (4) continuity and cooperation of the services involved in EoL care. The results underline the fact that family caregivers in particular find open communication, information to provide them with the confidence to act, recognizing and responding to support needs and continuity in the course helpful in coping with EoL care situations. Access problems to specialist medical care, deficiencies in care coordination and bureaucratic hurdles in the provision of medical aids proved to be an additional burden. DISCUSSION: The results underline the importance of open communication and the integration of relatives into the care process for optimal care at the end of life. Close cooperation between the services involved and proactive support for relatives are essential, too, especially in rural areas where the challenges of accessing and coordinating care services are a major concern. CONCLUSION: The identification and communication of complex problems, the needs of patients and their relatives and possible barriers to accessing care services are prerequisites for the timely initiation of palliative care measures and support for family caregivers. In addition to needs-based care structures, the optimization of EoL care in home settings requires cooperation and networking between professional stakeholders.


Assuntos
Serviços de Assistência Domiciliar , Cuidados Paliativos , Assistência Terminal , Humanos , Feminino , Masculino , Idoso , Assistência Terminal/organização & administração , Pessoa de Meia-Idade , Cuidados Paliativos/organização & administração , Alemanha , Adulto , Serviços de Assistência Domiciliar/organização & administração , Idoso de 80 Anos ou mais , Família/psicologia , Relações Profissional-Família , Doença Crônica/terapia , Entrevistas como Assunto , Programas Nacionais de Saúde
16.
Resuscitation ; 201: 110298, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38950727

RESUMO

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. CONCLUSION: 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.


Assuntos
Cuidadores , Parada Cardíaca Extra-Hospitalar , Humanos , Parada Cardíaca Extra-Hospitalar/psicologia , Parada Cardíaca Extra-Hospitalar/terapia , Masculino , Feminino , Estudos Transversais , Pessoa de Meia-Idade , Cuidadores/psicologia , Idoso , Família/psicologia , Estresse Psicológico/etiologia , Estresse Psicológico/epidemiologia , Adulto , Inquéritos e Questionários , Sobreviventes/psicologia , Sobreviventes/estatística & dados numéricos , Ansiedade/etiologia , Ansiedade/epidemiologia , Ansiedade/psicologia , Ansiedade/diagnóstico , Saúde Mental , Depressão/etiologia , Depressão/epidemiologia , Depressão/diagnóstico
17.
Intensive Crit Care Nurs ; 84: 103768, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39079481

RESUMO

OBJECTIVES: 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. CONCLUSION: 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. IMPLICATIONS FOR CLINICAL PRACTICE: 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.


Assuntos
Família , Unidades de Terapia Intensiva , Humanos , Família/psicologia , Unidades de Terapia Intensiva/organização & administração , Unidades de Terapia Intensiva/estatística & dados numéricos , Cuidados Críticos/métodos , Cuidados Críticos/psicologia , Cuidados Críticos/normas , Estado Terminal
19.
J Clin Nurs ; 2024 Jul 30.
Artigo em Inglês | MEDLINE | ID: mdl-39078079

RESUMO

AIM: 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. DESIGN: 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. DATA SOURCES: 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. CONCLUSION: 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. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: 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. REPORTING METHOD: The scoping review was reported in accordance with the PRISMA extension for scoping reviews. NO PATIENT OR PUBLIC CONTRIBUTION: 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.

20.
Aust Crit Care ; 2024 Jul 24.
Artigo em Inglês | MEDLINE | ID: mdl-39054203

RESUMO

BACKGROUND: The precautions taken in the intensive care unit (ICU) during the COVID-19 pandemic have caused a change in the needs of relatives of patients. OBJECTIVE: This research was conducted to determine the needs of relatives of ICU patients diagnosed with COVID-19. METHODS: The sample of this cross-sectional study consisted of 68 relatives of patients treated with COVID-19 in the ICU. Data were collected with a "Patient Relatives Information Form", a "Factors Affecting the Needs of the Relatives of Patients in the Intensive Care Unit Form", and the Critical Care Family Needs Inventory (CCFNI). A multivariate and univariate general linear model was used to determine the factors affecting the CCFNI total and subscale scores. Higher CCFNI scores are indicative of higher family need. RESULTS: The assurance (3.5 ± 0.4), information (3.4 ± 0.5), proximity (3.0 ± 0.6), comfort (2.8 ± 0.6), and support (2.7 ± 0.5) dimensions were important needs of relatives of patients hospitalised in the ICU. There was a weak negative correlation between participants' ages and CCFNI scores (p = 0.041). According to the univariate general linear model, significant difference was found between the total CCFNI scores (p = 0.032; 95% confidence interval [CI]: 2.68-3.03), based on multivariate general linear model proximity scores (p = 0.000; 95% CI: 2.49-2.91), and support scores (p = 0.029; 95% CI: 2.26-2.68) and the effect of ICU visit restrictions on relatives' anxiety. Additionally, based on the multivariate general linear model, significant difference was found between the assurance scores and the presence of people who provided support to avoid disruption of responsibilities at home (p = 0.025; 95% CI: 3.30-3.54) and between the proximity scores and the expectations of intensive care nurses (p = 0.028; 95% CI: 2.83-3.59). CONCLUSION: This study showed that relatives of ICU patients had high levels of needs. Relatives had high needs for assurance and information, whereas their needs for comfort and support were low. As the age of patients' relatives increased, their levels of needs decreased. Relatives of the patients who received support to help with their obligations at home had increased assurance needs, and those who had anxiety about the ICU visit restrictions had increased proximity and support needs.

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