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A polygenic risk score (PRS) combines the associations of multiple genetic variants that could be due to direct causal effects, indirect genetic effects, or other sources of familial confounding. We have developed new approaches to assess evidence for and against causation by using family data for pairs of relatives (Inference about Causation from Examination of FAmiliaL CONfounding [ICE FALCON]) or measures of family history (Inference about Causation from Examining Changes in Regression coefficients and Innovative STatistical AnaLyses [ICE CRISTAL]). Inference is made from the changes in regression coefficients of relatives' PRSs or PRS and family history before and after adjusting for each other. We applied these approaches to two breast cancer PRSs and multiple studies and found that (a) for breast cancer diagnosed at a young age, for example, <50 years, there was no evidence that the PRSs were causal, while (b) for breast cancer diagnosed at later ages, there was consistent evidence for causation explaining increasing amounts of the PRS-disease association. The genetic variants in the PRS might be in linkage disequilibrium with truly causal variants and not causal themselves. These PRSs cause minimal heritability of breast cancer at younger ages. There is also evidence for nongenetic factors shared by first-degree relatives that explain breast cancer familial aggregation. Familial associations are not necessarily due to genes, and genetic associations are not necessarily causal.
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BACKGROUND: Siblings of children with cancer may experience adverse household economic consequences, but their financial outcomes in adulthood are unknown. METHODS: A total of 880 siblings (aged 18-64 years) of adult-aged childhood cancer survivors were surveyed to estimate the prevalence of financial hardship by three established domains (behavioral, material, and psychological). For individual financial hardship items matching the contemporaneous National Health Interview Survey or Behavioral Risk Factor Surveillance System, siblings were compared with the general population by calculating adjusted prevalence odds ratios (ORs) to sample-weighted responses. Multivariable logistic regression models examined associations between sibling characteristics and each hardship domain and between sibling hardship and survivors' cancer/treatment characteristics. RESULTS: Behavioral, material, and psychological hardship was reported by 24%, 35%, and 28%, respectively. Compared with national survey respondents, siblings were more likely to report worries about medical bills (OR, 1.14; 95% confidence interval [CI], 1.06-1.22), difficulty affording nutritious foods (OR, 1.79; 95% CI, 1.54-2.07), and forgoing needed medical care (OR, 1.38; 95% CI, 1.10-1.73), prescription medications (OR, 2.52; 95% CI, 1.99-3.20), and dental care (OR, 1.34; 95% CI, 1.15-1.57) because of cost. Sibling characteristics associated with reporting financial hardship in one or more domains included female sex, older age, chronic health conditions, lower income, not having health insurance, high out-of-pocket medical expenditures, and nonmedical/nonhome debt. No survivor cancer/treatment characteristics were associated with sibling financial hardship. CONCLUSIONS: Adult siblings of childhood cancer survivors were more likely to experience financial hardship compared with the general population. Childhood cancer may adversely affect entire households, with potentially lasting implications.
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Supervivientes de Cáncer , Neoplasias , Adulto , Humanos , Niño , Femenino , Hermanos , Neoplasias/epidemiología , Neoplasias/terapia , Estrés Financiero/epidemiología , Costo de Enfermedad , Sobrevivientes , Encuestas y CuestionariosRESUMEN
People with schizophrenia experience difficulties with social interactions. One contributor to these social deficits is dysfunction in processing facial features and facial emotional expressions. However, it is not known whether face processing deficits are evident in those with other psychotic disorders or in those genetically at-risk for psychosis (i.e., first-degree relatives of those with psychosis). We assessed event-related potentials (ERPs) during a facial and emotion processing task in 100 people with a diagnosis of schizophrenia or another psychotic condition (PSY), 32 of their siblings (SIB) and 45 healthy comparison participants (CTL). In separate blocks, participants identified the sex (male or female) or emotion (happy, angry, neutral) of faces. In a comparison condition, participants indicated whether buildings had one or two floors. ERPs were examined in two stages. First, we compared ERPs across the emotion, sex and building identification conditions. Second, we compared ERPs among the three different facial emotions. PSY exhibited significantly lower amplitudes over parietal-occipital regions between 111 and 151 ms when viewing faces but not buildings than CTL, consistent with a face-selective N170 ERP component deficit. The SIB group was intermediate for faces, but not significantly different than PSY or CTL. During emotion identification, all three groups showed increased N170 amplitudes to angry and happy versus neutral expressions, with no group differences. In follow up analyses, we examined differences between PSY with or without affective psychosis, and differences between those with schizophrenia versus other psychotic disorders; there were no significant differences in these analyses. Face processing deficits assessed with ERPs were observed in a group of diverse psychotic disorders, though deficits were not seen to be modulated by facial emotion expression. Additionally, N170 deficits are not evident in siblings of those with PSY.
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Reconocimiento Facial , Trastornos Psicóticos , Humanos , Masculino , Femenino , Reconocimiento Facial/fisiología , Electroencefalografía , Hermanos , Potenciales Evocados/fisiología , Trastornos Psicóticos/psicología , Emociones/fisiología , Expresión FacialRESUMEN
In traditional game theory tasks, social decision-making is centered on the prediction of the intentions (i.e., mentalizing) of strangers or manipulated responses. In contrast, real-life scenarios often involve familiar individuals in dynamic environments. Further research is needed to explore neural correlates of social decision-making with changes in the available information and environmental settings. This study collected fMRI hyperscanning data (N = 100, 46 same-sex pairs were analyzed) to investigate sibling pairs engaging in an iterated Chicken Game task within a competitive context, including two decision-making phases. In the static phase, participants chose between turning (cooperate) and continuing (defect) in a fixed time window. Participants could estimate the probability of different events based on their priors (previous outcomes and representation of other's intentions) and report their decision plan. The dynamic phase mirrored real-world interactions in which information is continuously changing (replicated within a virtual environment). Individuals had to simultaneously update their beliefs, monitor the actions of the other, and adjust their decisions. Our findings revealed substantial choice consistency between the two phases and evidence for shared neural correlates in mentalizing-related brain regions, including the prefrontal cortex, temporoparietal junction (TPJ), and precuneus. Specific neural correlates were associated with each phase; increased activation of areas associated with action planning and outcome evaluation were found in the static compared with the dynamic phase. Using the opposite contrast, dynamic decision-making showed higher activation in regions related to predicting and monitoring other's actions, including the anterior cingulate cortex and insula. Cooperation (turning), compared with defection (continuing), showed increased activation in mentalizing-related regions only in the static phase, while defection, relative to cooperation, exhibited higher activation in areas associated with conflict monitoring and risk processing in the dynamic phase. Men were less cooperative and had greater TPJ activation. Sibling competitive relationship did not predict competitive behavior but showed a tendency to predict brain activity during dynamic decision-making. Only individual brain activation results are included here, and no interbrain analyses are reported. These neural correlates emphasize the significance of considering varying levels of information available and environmental settings when delving into the intricacies of mentalizing during social decision-making among familiar individuals.
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Toma de Decisiones , Imagen por Resonancia Magnética , Hermanos , Humanos , Masculino , Femenino , Toma de Decisiones/fisiología , Adulto Joven , Adulto , Mapeo Encefálico , Interacción Social , Teoría de la Mente/fisiología , Conducta Cooperativa , Conducta Social , Encéfalo/fisiología , Encéfalo/diagnóstico por imagenRESUMEN
BACKGROUND: There is limited evidence as to whether the immune protein profile is associated with a particular symptomatology pattern across the psychosis continuum. METHODS: We estimated two bifactor models of general and specific dimensions of psychotic experiences in unaffected siblings of patients (n = 52) and community controls (n = 200), and of psychotic symptoms in first-episode psychosis (FEP) patients (n = 110). We evaluated associations between these transdiagnostic dimensions and trait (TNF-α, IFN-γ), state (IL-6, IL-1ß), and regulatory (TGF-ß, IL-10, IL-4) cytokines. We explored whether schizophrenia genetic liability (schizophrenia polygenic risk score; SZ-PRS) modified the associations. RESULTS: High levels of trait marker IFN-γ were associated with the severity of general psychosis dimension in the unaffected siblings and community controls, expanding to the depressive dimension in siblings and to the manic dimension in FEP. High TNF-α levels were associated with more positive psychotic experiences in unaffected siblings and manic symptoms in FEP. Low levels of state markers IL-6 and IL-1ß were observed in unaffected siblings presenting more depressive experiences. Still, high levels of IL-6 and IL-1ß were associated with the severity of the depressive and negative symptom dimensions at FEP. The severity of transdiagnostic dimension scores across the three groups was associated with lower regulatory cytokines. Exploratory analysis suggested that a high SZ-PRS contributed mostly to associations with psychotic dimensions. CONCLUSIONS: IFN-γ mapped onto the multidimensional expression of psychosis, reinforcing the trait concept. State markers IL-6 and IL-1ß may fluctuate along the spectrum. Dysfunction in the regulatory arm may disinhibit the inflammatory system. Associations with psychotic dimensions may be more prone to SZ-PRS susceptibility.
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BACKGROUND: The relationship between childhood trauma (CT) and psychotic symptoms in patients with schizophrenia (SCZ), and subthreshold psychotic experiences in non-clinical populations is well-established. However, little is known about the relationship between subtypes of trauma and specific symptoms in patients, their siblings, and controls. It is also not clear which variables mediate the relationship between trauma and psychotic symptoms. METHODS: Seven hundred and forty-two patients with SCZ, 718 of their unaffected siblings and 1039 controls from three EU-GEI sites were assessed for CT, symptom severity, and cognitive schemas about self/others. CT was assessed with the Childhood Trauma Questionnaire, and cognitive schemas were assessed by The Brief Core Schema Scale. RESULTS: Patients with psychosis were affected by CT more than their siblings and controls in all domains. Childhood emotional abuse and neglect were more common in siblings than controls. CT was related to negative cognitive schemas toward self/others in patients, siblings, and controls. We found that negative schemas about self-mediated the relationship between emotional abuse and thought withdrawal and thought broadcasting. Approximately 33.9% of the variance in these symptoms was explained by the mediator. It also mediated the relationship between sexual abuse and persecutory delusions in SCZ. CONCLUSIONS: Our findings suggest that childhood abuse and neglect are more common in patients with schizophrenia than their siblings and healthy controls, and have different impacts on clinical domains which we searched. The relationship between CT and positive symptoms seems to be mediated by negative cognitive schemas about self in schizophrenia.
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RESEARCH QUESTION: What meanings do donor conceived young adults give to direct-to-consumer DNA testing, and how does direct-to-consumer DNA testing relate to their lived experiences? DESIGN: Thirty-three young adults participated in in-depth interviews in November 2020 and September 2021 as part of a study of donor conceived people in the UK that focuses on the period of young adulthood. All participants were aged between 18 and 31 years, had been conceived by sperm donation at a time of legal donor anonymity, and were mainly resident in the UK. Interviews were analysed using reflexive thematic analysis. RESULTS: Nineteen participants (58%) had used at least one direct-to-consumer DNA test, and 14 (46%) had not. Three participants (9%) had learned about their donor conception inadvertently through a direct-to-consumer DNA test. Twelve participants (36%) had matched with their donor, someone conceived using the same donor, or both. Four related themes that capture participants' perspectives and experiences of direct-to-consumer DNA testing were identified: ruptures, disclosures, webs and temporalities. CONCLUSIONS: To the authors' knowledge, this is the first study to evidence both active interest and disinterest in direct-to-consumer DNA testing among individuals who are donor conceived. The meanings ascribed to, and uses of, direct-to-consumer DNA testing vary significantly among donor conceived young adults. Findings relating to the relationship between 'informal' and 'formal' information systems, and the absence of guidance and support for those using direct-to-consumer DNA tests, should be considered carefully by practitioners, regulatory bodies and policymakers going forward.
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Pruebas Dirigidas al Consumidor , Humanos , Adulto , Masculino , Reino Unido , Adulto Joven , Pruebas Dirigidas al Consumidor/psicología , Adolescente , Pruebas Genéticas , Femenino , Inseminación Artificial Heteróloga/psicología , Donantes de Tejidos/psicologíaRESUMEN
Sexual minority groups experience elevated risk across a range of adverse outcomes. Previous studies from the USA showed that these risks include contact with the criminal justice system for sexual minority females but not for males. This study examined whether this relationship between sexual minority status and criminal behavior was also found in a more secular country like the Netherlands with more progressive attitudes toward sexual minorities. Furthermore, the study aimed to examine whether this relationship applied to various types of crime and could be explained by unmeasured familial factors. Longitudinal data from the Dutch national population, including 75,362 individuals in a same-sex relationship and 3,464,906 individuals in opposite-sex relationships, were used to compare the risk of crime among males and females in same-sex and opposite-sex unions. Discordant sibling models were included to increase control over possible sources of confounding from shared familial factors. Analyses were repeated for six types of crime, including property offenses, violence, vandalism, and public order offenses, traffic offenses, drugs offenses, and other offenses. The results showed that the direction of the associations between same-sex relationships and offending differed for men and women. In general, men in same-sex relationships were less likely to be a suspect of crime compared to those in opposite-sex relationships [odds ratio (OR) = 0.685; p < .001]. Women in same-sex relationships exhibited higher risk than those in opposite-sex unions (OR = 1.560; p < .001). Similar patterns emerged for most crime types and the discordant sibling models yielded conclusions that were substantively similar to those among the total population.
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Conducta Criminal , Humanos , Países Bajos/epidemiología , Masculino , Femenino , Adulto , Minorías Sexuales y de Género/estadística & datos numéricos , Minorías Sexuales y de Género/psicología , Persona de Mediana Edad , Crimen/estadística & datos numéricos , Adolescente , Adulto Joven , Estudios LongitudinalesRESUMEN
BACKGROUND: There is a lack of research about the experiences and impact of having a sibling with a life-limiting condition. Studies focus on the sibling experience during childhood but the experience and impact during adulthood is unknown despite the increased life-expectancy of children with life-limiting conditions. AIM: To explore adult siblings' perspectives on the experience of having a sister/brother with a childhood life-limiting condition and to identify their perceived needs and preferences for support. DESIGN: A qualitative exploratory study design with data generated by semi-structured interviews and analysed using reflexive thematic analysis, underpinned by interpretivism. SETTING/PARTICIPANTS: Twenty-two siblings (17-42 years old) were recruited via a children's hospice in England. RESULTS: The experience of having a sibling with a life-limiting condition changes over time in response to how understandings of the meaning of a life-limiting condition develop and changing roles/relationships with parents and siblings. These experiences have an enduring impact on adult sibling's mental health which is compounded by their unmet (and sometimes unrecognised) support needs in adolescence and adulthood. Siblings described the importance of support continuing into adulthood with a focus on the provision of psychotherapy and peer support. CONCLUSIONS: Having a sister/brother with a childhood life-limiting condition appeared to have a significant and ongoing impact on adult siblings but their support needs, particularly for psychotherapy and peer support, are overlooked. The findings highlight the importance of ensuring siblings are included in family assessments and that family-based interventions are developed to promote sibling-parent relationships.
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Cuidados Paliativos al Final de la Vida , Hermanos , Masculino , Adulto , Niño , Adolescente , Humanos , Adulto Joven , Hermanos/psicología , Relaciones entre Hermanos , Inglaterra , Investigación Cualitativa , Adaptación PsicológicaRESUMEN
Despite increasing interest in the circumstances and outcomes of only children in the demographic literature, the conceptualization of this group has received limited scholarly attention. This research note argues for greater engagement by demographers and social scientists in the conceptualization and identification of only children by addressing three aims. First, we outline potential definitions of only children, present a framework to guide researchers' decisions, and evaluate whether only children can be reliably identified using the British birth cohort studies. Second, we show that the prevalence estimates are contingent on the timing of measurement in childhood, indicating the need for caution when deriving only-child status from cross-sectional household grid data. Third, we demonstrate that both the size and the characteristics of the only-child group may differ across definitions, highlighting that the accurate operationalization of some definitions is particularly restricted by survey designs that prioritize mothers for data collection on children and families. We argue that researchers interested in sole children's outcomes must choose the most appropriate measure for a given research question and, given that many datasets limit how accurately any indicator of only children can capture the chosen definition, reflect on how the operationalization of their measure might affect the results.
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Composición Familiar , Hijo Único , Humanos , Estudios Transversales , Encuestas y Cuestionarios , Reino Unido/epidemiologíaRESUMEN
Despite the prevalence of internalizing and externalizing difficulties in children, the impact of these problem behaviors on the development of important social cognitive skills, such as Theory of Mind (ToM), is not well-understood. Indeed, many studies that have explored relations between problem behaviors and ToM report inconsistent findings. A possible reason for these disparities may be a lack of accounting for social protective factors within the home, such as the presence and number of siblings. Here, we explored the moderating influence of sibling presence and number on the relation between problem behaviors (i.e., internalizing and externalizing) and ToM. A total of 184 children (88 boys; Mage = 64.6 months, SD = 10.39) completed six well-validated ToM tasks while mothers reported on their children's externalizing and internalizing behaviors. Children who had siblings living in the same home exhibited higher ToM than children without siblings. In addition, both sibling presence and number of siblings moderated the relation between children's externalizing behaviors and ToM, such that in children without siblings externalizing behaviors were negatively associated with ToM. In contrast, children with siblings had similar ToM regardless of externalizing behaviors. As well, children with relatively fewer siblings and higher externalizing behaviors displayed lower ToM than children with relatively more siblings and higher externalizing behaviors. We did not detect a moderating effect of sibling presence or number on the relation between internalizing behaviors and ToM. These findings provide support for siblings' protective utility within the context of children's social cognition.
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AIM: Globally, 1 in 10 babies are born preterm. Families with preterm born infants may suffer strains related to the presence of a preterm child. To date, most evidence focuses on the outcome of children born preterm and of their parents. Our objective was to investigate the evidence on the impact of having a preterm born sibling on cognitive function, mental health and quality of life of term-born siblings and critically appraise the evidence. METHODS: We searched five electronic databases, Google Scholar and reference lists. Two reviewers independently conducted screening, data extraction and critical appraisal. RESULTS: We retrieved 9121 articles. After duplicates, titles, abstract and full text review, seven studies met the inclusion criteria. One study reported higher anxiety and depression scores on index cases in the term born comparison group, compared to the index cases in the preterm born sibling group. Another study reported more feelings of reduced parental attention, and more interpersonal problems in the preterm born sibling group, than the comparison group. CONCLUSIONS: Although two studies reported a difference in outcomes between index cases in preterm born sibling groups and comparison groups, the scarce evidence did not allow us to delineate an effect or lack of it.
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Cognición , Recien Nacido Prematuro , Salud Mental , Calidad de Vida , Hermanos , Humanos , Hermanos/psicología , Recién Nacido , NiñoRESUMEN
Musculocontractural Ehlers-Danlos syndrome (MC-EDS) is a rare entity worldwide with underlying pathogenic variant in the carbohydrate sulfotransferase 14 (CHST14) gene. Previous reports of the same entity from India were of two unrelated cases. Ours is the first report of two siblings in an Indian family with craniofacial dysmorphism and distal arthrogryposis with a clinical diagnosis of EDS, where an underlying pathogenic variant in CHST14 was detected by exome sequencing.
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BACKGROUND: Healthy siblings of children with life-limiting conditions often experience emotional and behavioural struggles over the course of the ill child's condition(s). Resources to support these siblings are limited due to a lack of understanding about their needs. Therefore, this study was designed to characterize the emotional and behavioural trajectories among siblings of children with progressive, life-limiting genetic, metabolic, or neurological conditions over a 12-month observation period. METHODS: Seventy siblings were recruited from a large-survey based study (Charting the Territory) that examined the bio-psychosocial health outcomes of parents and siblings. Linear mixed effect models were used to assess the association between siblings' emotions and behaviour trajectories and selected demographic variables. Siblings' emotions and behaviour were measured with Child Behaviour Checklist (CBCL). RESULTS: Siblings' mean age was 11.2 years at baseline and Internalizing, Externalizing, and Total Behaviour Problems mean scores were within normal ranges across time. However, 7-25% of siblings had scores within the clinical range. Brothers had higher levels of Internalizing Problems than sisters, whereas sisters had higher levels of Externalizing Problems than brothers. When treatment was first sought for the ill child less than a year prior to study participation, siblings had higher levels of Internalizing and Externalizing Problems compared with siblings who participated more than one year after treatment was sought. CONCLUSION: Healthy siblings experience emotional and behavioural problems early in the child's disease trajectory. Although these problems improve with time, our findings show that brothers and sisters experience different types of challenges. Therefore, timely support for siblings is important as they navigate through the uncertainties and challenges.
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Hermanos , Humanos , Masculino , Femenino , Hermanos/psicología , Niño , Adolescente , Emociones , Encuestas y Cuestionarios , PreescolarRESUMEN
Parenting a child on the autism spectrum presents particular challenges that can lead to increased stress, anxiety, and depression among family members. Therefore, we aimed to investigate the prevalence of mental disorders in first-degree relatives of individuals on the autism spectrum. This article adheres to the Preferred Reporting Items for Systematic Review and Meta-Analyses Protocols (PRISMA-P) guidelines, including studies indexed in PubMed/Medline, Embase, PsycINFO, Biblioteca Virtual em Saúde (BVS), and SciELO. Nineteen articles met eligibility criteria for the systematic review. Using a random-effects model (N = 93,876), we found a pooled prevalence of affective disorders of 13% in mothers of people on the autism spectrum (95% CI 7-21%; I2 = 99%, p < 0.01). Additionally, another random-effects model pointed out that first-degree relatives of people on the autism spectrum (N = 93,263) were more likely to present affective disorders than relatives of people with neurotypical development (N = 152,455) (pooled OR: 2.17; 95% CI 1.81-2.61). Careful assessment for mental disorders in parents and siblings of individuals on the autism spectrum is crucial to ensure appropriate treatment for these family members. This approach can also contribute to optimizing care for the individuals on the autism spectrum.
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In typical times, adolescents' relationships with family members influence changing cognitive, social, and physical aspects of their development. The COVID-19 pandemic, however, impacted the full family system in ways that were unprecedented. Scholars of adolescence worldwide were driven to understand how adolescents' relationships with family members changed due to these dramatic societal shifts and the influence these relationships had on adolescents' well-being. This systematic review examined two research questions with 189 articles published from 2020-2022: (1) How has the COVID-19 pandemic impacted families with adolescents, including broader family functioning, family relationship qualities, and parenting? and (2) How has the pandemic or pandemic-related stressors interacted with family functioning, family relationships, and parenting of adolescents to impact adolescent well-being and adjustment? Additionally, examination of the relevant studies were divided into sub-themes of pandemic influence: (a) family environment and routines, (b) family difficulties, (c) parenting and parent-adolescent relationships, and (d) sibling relationships.
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Adolescence is a life stage beset by a growing desire for privacy. This study evaluated adolescents' experiences across four types of potentially privacy-invasive behaviors (PPIVBs) and within four different types of relationships. 158 adolescents (Mage = 16.9 years, SD = 1.0; 53.5% female) reported on the frequency of the PPIVBs, perceived control over the behaviors, secret/private information threatened by the behaviors, and feelings of privacy invasion produced by the behaviors. Privacy experiences were more similar across relationships than across types of behavior. Stronger feelings of privacy invasion were reported for PPIVBs involving electronics and information, for behaviors by family members, when behaviors occurred infrequently, when adolescents perceived greater control over whether the behaviors occurred, and when behaviors threated secret/private information.
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INTRODUCTION: Adolescent siblings of children with cancer jointly face the experience of having a brother or sister with cancer and being in the developmental period of adolescence themselves. Based on Hobfoll's conservation of resources theory, we aimed to identify profiles based on two distinct resources: sense of hope (personal resource) and perceived social support (social resource). Both have been found to be vital for optimal functioning during adolescence. Further, we examined differences in these profiles with regard to two distal outcomes: normalization (a coping strategy) and search for meaning in life (a commonly assumed adolescent developmental task). METHODS: One hundred and eleven Israeli adolescent siblings (aged 13-17) completed self-report measures. RESULTS: Two distinct resource-based profiles were identified: "high resources" and "low resources." Participants with "high resources" had a higher sense of hope and higher social support; were significantly more likely to live with married parents than with unmarried parents; had marginally fewer siblings; and scored higher on normalization and search for meaning in life than did participants with "low resources." CONCLUSIONS: The study outcomes highlight the essential role of resources for this population. Such resources seem to be helpful for normalization, a coping strategy whose focus is on facilitating regular family routines, and for the siblings' search for meaning in life. Practitioners who work with families in the context of childhood cancer should aim to help these siblings obtain key resources, such as social support, and to actively pursue their goals.
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Neoplasias , Hermanos , Masculino , Niño , Humanos , Adolescente , Adaptación Psicológica , Padres , Apoyo SocialRESUMEN
BACKGROUND: Children with meningomyelocele may require continuous care. Consequently, there is a risk for caregiver burden and impact on family quality of life (QoL), including siblings' QoL. Some studies analysed caregivers' burden and family QoL separately. However, none of these studies evaluated siblings' QoL and the associations between these three dimensions. This study investigated the associations between caregivers' burden, family QoL and siblings' QoL in Brazilian families of children with meningomyelocele and its correlations with sociodemographic, functional and clinical variables. Siblings' QoL was specifically assessed using as a parameter the QoL of typically developed Brazilian children. METHODS: One hundred and fifty families, 150 caregivers and 68 siblings completed the Family Quality of Life Scale, Burden Interview, KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires. RESULTS: Most families and caregivers reported a high family QoL and a low caregiver burden. Family QoL was significantly lower as caregivers' burden increased. Caregiver's burden was significantly lower with increasing family QoL levels. Self-reported siblings' QoL was significantly worse than that of typically developed peers. There were no significant differences between self and parent-reported siblings' QoL. Self-reported siblings' QoL was significantly worse as their age increased and better with increasing family QoL levels. Parent-reported siblings' QoL was significantly worse with increasing levels of caregiver's burden and significantly better as family QoL increased. There were no significant associations with functional and clinical variables. CONCLUSIONS: Despite the cross-sectional nature of the available data precludes any statements of causality, our results reinforce the relevance of knowing the factors that influence the QoL of families and siblings of children and adolescents with meningomyelocele and the relevance of actions aimed at reducing caregivers' burden, improving family QoL and meeting siblings' individual needs. Future multicenter studies may validate the generalizability of our findings.
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Meningomielocele , Calidad de Vida , Niño , Humanos , Adolescente , Hermanos , Estudios Transversales , Cuidadores , Encuestas y CuestionariosRESUMEN
BACKGROUND: It is known that chronic condition also affects siblings without chronic illness. Healthy siblings of children with a chronic condition and aged 9-14 years and healthy children with a sibling without chronic illness and their parents were included in the study. AIM: The aim of our study was to examine the internet-game addiction, physical activity, quality of life and sleep in children with a sibling with chronic condition and compare them with their peers with a healthy sibling. METHODS: Computer game addiction, physical activity, sleep quality and quality of life were evaluated respectively by Computer Game Addiction Scale for Children, Child Physical Activity Questionnaire, Children's Sleep Disorder Scale and Children's Quality of Life Scale. RESULTS: While the mean age of 75 children with chronically ill siblings was 10.65 ± 1.59 years, the mean age of 75 healthy children with healthy siblings was 10.46 ± 2.09 years. It was observed that children with a sibling with a chronic condition were more tend to computer-game addiction, had lower sleep quality, lower quality of life in terms of school functionality and psychosocial health compared to children with a healthy sibling (p < 0.05). CONCLUSIONS: It was revealed that in families with children with a chronic condition, siblings with no health problems should also be evaluated in psychosocial terms and supported by appropriate approaches, such as to increase the level of physical activity.