The experiences and perceptions of healthy siblings of children with a long-term condition: Umbrella review.

PROBLEM: The lives of healthy siblings living with a sibling with a long- term condition are often shaped by the family, type of illness, length of illness, age of the child, caregiver demands, and support provided to the family, ill sibling, and healthy sibling. While the experiences of healthy siblings are documented in the literature by parent proxy, literature on healthy siblings self-reported experiences of living with a sibling who has a long-term condition remains scarce. PURPOSE: This umbrella review aims to synthesize reviews on the self-reported experiences of healthy siblings of children living with a sibling who has a long-term condition. ELIGIBILITY CRITERIA: Published peer-reviewed reviews in English language exploring the self-reported experiences of healthy siblings under 24 years old, whose siblings are diagnosed with a long-term condition. SAMPLE: Using a developed search strategy, seven electronic databases (CINAHLPlus, Scopus, PubMed, PsycINFO, Cochrane Database of Systematic Reviews, Clinical Key, and Google Scholar) were searched from 2018 till December 2023. Eleven reviews met the inclusion criteria and were subjected to narrative synthesis. RESULTS: Four themes (adjusting to changes, wanting to help, living the ups and downs, living the changes), and eight subthemes were generated from the syntheses. CONCLUSION: This is the first umbrella review undertaken on healthy siblings self-reported experiences of living with a sibling who has a long-term condition. The impact of a long-term condition on healthy siblings of children with a long-term condition suggests a need for healthcare providers and organisations to provide better emotional, psychological, and informational support to healthy siblings and their families. IMPLICATIONS: Findings from this review will inform healthcare providers, organisations, researchers, and policymakers on the development of future clinical practices and research for healthy siblings.

Impairment of social cognition in comparative studies of patients with schizophrenia and their healthy siblings. / Zaburzenia poznania spolecznego w badaniach porównawczych osób chorujacych na schizofrenie i ich zdrowego rodzenstwa.

Social cognition impairment is a significant neurocognitive disturbance observed during clinical course of schizophrenia. Deficits in this field observed in first- degree unaffected relatives have been suggested as a potential endophenotype. The main purpose of this study was to review the range of published articles on this topic, mainly from the last decade (2010-2021). A search in the online databases PubMed, Medline and Polish Medical Library using following keywords: schizophrenia, healthy sibling, social cognition, theory of mind, facial emotion recognition. Results of the review indicate on a substantial agreement on how to classify relatives' deficits in social cognition. Most analyzed studies indicate their level of neurocognitive disturbance in between schizophrenic siblings and controls. Schizophrenic patients present both theory of mind and facial emotion recognition impairment, comparable deficits have been observed to a lesser degree in their healthy siblings. It may be supposed that people with familial risk of schizophrenia may experience similar social cognition deficits as their sick relatives. Moreover, results of majority of studies reveal correlations of social cognition disturbances with cognitive dysfunctions and subclinical psychopathology in healthy siblings. However, further research on more numerous groups is needed to draw reliable conclusions on this topic.

Evaluation of the nutritional status of children with type 1 diabetes and their healthy siblings.

BACKGROUND: Although there are studies evaluating the psychological adjustment of healthy children when their siblings have type 1 diabetes mellitus (T1DM), no study evaluating their nutritional status exists. Thus, this study aimed to determine the nutritional status of children with T1DM and their healthy siblings. MATERIAL AND METHODS: Data from a control group, healthy siblings, and patients who were followed and treated for T1D in the Paediatric Gastroenterology and Paediatric Endocrinology outpatient clinics of the Health Sciences University Gülhane Medical Faculty between November 2019 and November 2020 were analysed and compared. The groups were compared in terms of nutritional characteristics, daily macro and micronutrient intakes and classified according to their body mass index (BMI) Z-scores. RESULTS: The study population consisted of 29 children with T1DM (51.7% female, 48.3% male; age: 11.00 ±3.66 years), 36 healthy siblings of children with T1D (50% female, 50% male; age: 9.61 ±4.84 years), and a control group of 58 healthy children (51.7% female, 48.3% male; age: 10.68 ±3.01years).The BMI Z-score of 28.6%of healthy siblings and 25% of children with T1D was > 1 SD or overweight. All of the control group children were of normal weight. None of the children were obese; however, the overweight rate was significantly higher in the healthy siblings and diabetes groups compared to the control group (p = 0.012). Daily energy intake (%) was significantly higher in the control group than in the healthy siblings (p < 0.001). CONCLUSIONS: A quarter of the children with T1D over five years of age were overweight. In addition, healthy siblings were found to have higher BMI Z-scores than controls. This is the first study to evaluate the nutritional status of siblings of patients with T1D and will hopefully lead to more comprehensive studies that will also assess their daily exercise and physical activity.

Leucemia na infância e adolescência: repercussões psicossociais nos irmãos sadios, sob a ótica das mães / Leukemia in childhood and adolescence: psychosocial repercussion on healthy siblings, from a mother’s perspective / Leucemia en la niñez y adolescencia: repercusiones psicosociales en los hermanos sanos, por la óptica de las madres

O processo de adoecimento, tratamento e hospitalizações após o diagnóstico de câncer infantojuvenil pode causar impacto emocional, influenciar na dinâmica e rotina de toda a família. Diante desse cenário, a pesquisa objetivou compreender as possíveis mudanças nas relações dos irmãos sadios, no contexto familiar, social e escolar, sob a ótica das mães. A amostra foi composta por 15 mães de crianças e adolescentes diagnosticadas com leucemia, com ao menos um filho sadio. Os dados foram coletados por entrevista semiestruturada e, com base na teoria da análise de conteúdo proposta por Bardin (1977), foram encontradas quatro categorias: repercussões do adoecimento, relações familiares, relações sociais, vida acadêmica. Pôde-se observar que os irmãos saudáveis vivenciam, de modo singular, o adoecimento do irmão com leucemia. Apresentaram diversas formas de reagir e de se relacionar. Na maioria, isolaram-se, aproximaramse, revoltaram-se ou demonstraram fragilidade nas trocas interpessoais, deflagrando um pedido de ajuda e atenção.

TThe process of illness, treatment, and hospitalizations after the diagnosis of child-adolescent cancer may cause emotional impact, as well as influence the dynamics and routine of the entire family. Given this scenario, the research aimed to comprehend the possible changes in the relationships of healthy siblings, in the family, social, and school context, under the mother's perspective. The sample consisted of 15 mothers of children and adolescents diagnosed with leukemia, with at least one healthy child. The data were collected through a semi-structured interview and, based on the theory of Content Analysis, proposed by Bardin (1977), four categories were found: repercussions of illness, family relations, social relations, and academic life. It was possible to observe that the healthy siblings experience, in a singular way, the sibling’s illness with leukemia. They presented plenty of ways of reacting and relating with each other. Mostly, they isolated themselves, approached, revolted, or demonstrated fragility in interpersonal exchanges, triggering a call for help and attention.

El proceso de enfermedad, tratamiento y hospitalización después del diagnóstico de cáncer en la niñez y la adolescencia puede causar impacto emocional, influir en la dinámica y en la rutina de toda la familia. Ante este escenario, la investigación tuvo como objetivo comprender los posibles cambios en las relaciones de los hermanos sanos, en el contexto familiar, social y escolar, desde la óptica de las madres. La muestra fue compuesta por 15 madres de niños y adolescentes diagnosticados con leucemia, con por lo menos un hijo sano. Los datos fueron recolectados a través de una entrevista semiestructurada y, a partir de la teoría del Análisis de Contenido propuesta por Bardin (1977), se encontraron cuatro categorías: repercusiones de la enfermad, relaciones familiares, relaciones sociales y vida escolar. Se pudo observar, que los hermanos sanos experimentan de modo singular la enfermedad del hermano con leucemia. Los hermanos presentaron diversas formas de reaccionar y de relacionarse, en su mayoría, se aislaron, se acercaron, se rebelaron o demostraron fragilidad en los intercambios interpersonales, desencadenando un pedido de ayuda y atención.

Cognitive performance and psychosocial functioning in unaffected siblings of bipolar disorder patients in comparison with healthy controls.

We aimed to evaluate the cognitive domains for endophenotypes and their bearing on psychosocial functioning in unaffected siblings of patients with bipolar type I disorder (BD-I). We recruited unaffected siblings (n = 60) and age (±2 years), gender and education-matched healthy control subjects (n = 60) after screening with Structured clinical interview for DSM-IV-TR axis I disorders (SCID-I) - Research Version, Young Mania rating scale (YMRS), Hamilton depression rating scale (HDRS) and Family Interview for Genetic Studies scale (FIGS). Cognitive functioning was evaluated using Addenbrooke's Cognitive Examination III Revised (ACE-III R) and Trail making tests A and B, whereas psychosocial functioning was evaluated using the Social and Occupational Functioning Assessment Scale (SOFAS). The siblings had scored significantly lower in memory tasks of ACE-III R (p < 0.001) than controls, whereas other cognitive domains were comparable. Psychosocial functioning did not differ significantly between the groups. No correlation existed between cognitive performance and psychosocial functioning. Memory functions can be considered as a possible endophenotype for BD-I.

Psychometric liability to psychosis and childhood adversities are associated with shorter telomere length: A study on schizophrenia patients, unaffected siblings, and non-clinical controls.

Compared to the general population, individuals diagnosed with Schizophrenia (SCZ) experience a higher frequency and an earlier onset of chronic medical disorders, resulting in a reduction in life expectancy by an average of 15-25 years. Recently, it has been hypothesized that SCZ is a syndrome of accelerated aging. Childhood adversity was also associated with the pathogenesis and course of SCZ. Our hypothesis was that both SCZ patients and their unaffected siblings would have shorter telomere length (TL) compared to of non-clinical controls. Our additional goals were to determine (1) whether shorter TL correlates with intermediate phenotypes of SCZ (i.e. Psychosis-like symptoms and schizotypal traits); and (2) whether childhood adversities have a moderating role in TL shortening among SCZ and their unaffected siblings. To this end, SCZ patients (n = 100), their unaffected siblings (n = 100) and non-clinical controls (n = 100) were enrolled. The main variables were TL, measured by aTL-qPCR; psychotic-like and schizotypal symptoms, assessed by The Community Assessment of Psychic Experience (CAPE) and the Structured Interview for Schizotypy-Revised (SIS-R), respectively; and childhood adversities evaluated by the Childhood Experience of Care and Abuse (CECA)-Interview. Potentially relevant variables also included in the analyses were: Global Assessment of Functioning (GAF) scores, cognitive performance, and socio-demographic features. In contrast to our hypothesis patients had similar TL when compared to the non-clinical controls. Interestingly, unaffected siblings had longer TL compared to both patients and controls (p < 0.001). Independent from group status a negative correlation was observed between TL and psychotic-like symptoms as rated by the CAPE (p < 0.01). Childhood adversities, especially loneliness between ages 0 and 11 were also negatively associated with TL (p < 0.05). Our findings suggest that psychometric liability to psychosis and childhood adversities may be associated with shorter TL. Unaffected siblings had longer TL, suggesting the potential role of resilience on both the TL and the clinical presentation. These findings must be considered preliminary, calling for larger-scale replication efforts.

Outcomes of an enhancement study with additional psychoeducational sessions for healthy siblings of a child with cancer during inpatient family-oriented rehabilitation.

OBJECTIVE: Chronic illness of a child puts healthy children of the family at risk of distress. Previous studies have demonstrated that healthy children's psychological symptoms can be reduced when the child knows more about the disease. So far, there is limited evidence of the effectiveness of psychoeducational interventions for healthy children. AIMS: To compare the effectiveness of an inpatient family-oriented rehabilitation program with vs without additional psychoeducational sessions for healthy children of families with children with cancer. PATIENTS AND METHODS: We performed a controlled study in 4 German family-oriented rehabilitation clinics. The outcomes of n = 73 healthy children (mean age: M = 9.55; SD = 3.14; range: 4-18), who participated in 5 additional psychoeducational sessions, were compared with the outcomes of n = 111 healthy children (mean age: M = 8.85; SD = 3.28; range: 4-17), who underwent the usual inpatient rehabilitation program. Primary outcomes were the healthy children's cancer-specific knowledge and their emotional symptoms. Secondary outcomes were family satisfaction and quality of life. RESULTS: Intention-to-treat analyses showed that both groups improved significantly from preintervention to postintervention. Improvements comprised knowledge about cancer (F(1,174) = 11.03, p < 0.001), self-reported emotional symptoms (F(1,135) = 31.68, p < 0.001), and parent-proxy-reported emotional symptoms (F(1,179) = 37.07, p < 0.001). The additional psycho-educational program did not significantly enhance the outcomes. The same pattern of significant improvement in both conditions emerged for all secondary outcomes. The immediate effects of the intervention persisted until 2 months after discharge from the rehabilitation program. CONCLUSIONS: Inpatient family-oriented rehabilitation is effective in improving multiple psychosocial outcomes of healthy children in families which have a child with cancer. Additional psycho-educational sessions did not show any substantial additional improvement.

Processing speed is associated with differences in IQ and cognitive profiles between patients with schizophrenia and their healthy siblings.

BACKGROUND: Processing speed turns out to be the central area of research on cognition in schizophrenia. So far the relationship between this dimension and the IQ level of patients and their healthy siblings has not been investigated. AIM: To investigate the differences in cognitive speed in patients with schizophrenia and their healthy siblings, and to determine whether cognitive speed as a covariate affects differences in IQ and cognitive profiles between groups. METHODS: Forty-seven inpatients diagnosed with schizophrenia according to DSM-IV (SCH) and their 36 healthy siblings (HSB) were tested with cognitive speed tasks according to Bartzokis et al. method and Wechsler Intelligence Scale. Additional control for the possible impact of antipsychotic drugs and selected demographic variables on the cognitive performance was taken into account. RESULTS: The siblings scored significantly higher in the cognitive speed task (p < 0.01) than patients, the WAIS-R cognitive test profiles were also significantly different in two ways: between groups, and between single test results in each of the assessed groups. The interaction effect: ANOVA, F(10, 770) = 2.798, p = 0.002. Similarly, the Performance and Full Scale IQs were significantly different, at p < 0.01. After controlling for cognitive speed, all significant differences no longer exist: e.g. Full Scale IQ, p = 0.459. CONCLUSIONS: Significant differences in cognitive speed between patients and their healthy siblings generate the differences in the cognitive profile assessed with Wechsler Intelligence Scale. Some problems of cognitive speed diagnosis and further research on the cognitive schizophrenia endophenotype were discussed.

The emerging role of the FKBP5 gene polymorphisms in vulnerability-stress model of schizophrenia: further evidence from a Serbian population.

Increased reactivity to stress is observed in patients with schizophrenia spectrum disorders and their healthy siblings in comparison with the general population. Additionally, higher levels of neuroticism, as a proposed psychological measure of stress sensitivity, increase the risk of schizophrenia. HPA axis dysregulation is one of the possible mechanisms related to the vulnerability-stress model of schizophrenia, and recent studies revealed a possible role of the functional genetic variants of FK506-binding protein 51 (FKBP5) gene which modulate activity of HPA axis. The purpose of the present study was to investigate impact of FKBP5 on schizophrenia in Serbian patients and to explore relationship between genetic variants and neuroticism by using the case-sibling-control design. In 158 subjects, we measured psychotic experiences, childhood trauma and neuroticism. Nine single-nucleotide polymorphisms (rs9295158, rs3800373, rs9740080, rs737054, rs6926133, rs9380529, rs9394314, rs2766533 and rs12200498) were genotyped. The genetic influence was modeled using logistic regression, and the relationship between genetic variants and neuroticism was assessed by linear mixed model. Our results revealed genetic main effect of FKBP5 risk alleles (A allele of rs9296158 and T allele of rs3800373) and AGTC "risk" haplotype combination (rs9296158, rs3800373, rs9470080 and rs737054, respectively) on schizophrenia, particularly when childhood trauma was set as a confounding factor. We confirmed strong relationship between neuroticism and psychotic experiences in patients and siblings and further showed relationship between higher levels of neuroticism and FKBP5 risk variants suggesting potential link between biological and psychosocial risk factors. Our data support previous findings that trauma exposure shapes FKBP5 impact on schizophrenia.

Sleep Disturbances in Children with Attention - Deficit/Hyperactivity Disorder (ADHD): Comparative Study with Healthy Siblings.

OBJECTIVES: Sleep disturbances in children with ADHD impact their functioning and overall Quality of Life. This paper's purpose is to study the occurrence of sleep disturbances in children with ADHD, in comparison to their healthy siblings and further, within the ADHD group, to look for correlation between sleep disturbances and age, severity of symptoms, presentations of ADHD and illness parameters. METHODS: The parents of 120 children of age group between 5-16 years, (60 children diagnosed with ADHD as per DSM-5 criteria and 60 of their healthy siblings) consecutively enrolled from a hospital's Child Psychiatry Outpatient services were interviewed using Child Sleep Habits Questionnaire (CSHQ) and severity of ADHD symptoms was rated using ADHD - RS. RESULTS: Sleep disturbances are more prevalent in pharmacologically treated children with ADHD than their healthy siblings, reduce with increasing age and are found more in the Predominantly Hyperactive/impulsive presentation of ADHD. CONCLUSION: Sleep disturbances are more prevalent in pharmacologically treated ADHD, making it an important aspect of ADHD management.

OBJECTIFS: Les perturbations du sommeil chez les enfants souffrant du TDAH influent sur leur fonctionnement et leur qualité de vie générale. Cet article vise à étudier l'occurrence des perturbations du sommeil chez les enfants souffrant du TDAH, en comparaison avec leurs frères et soeurs en santé et de plus, au sein du groupe de TDAH, à cerner les corrélations entre les perturbations du sommeil et l'âge, la gravité des symptômes, les présentations du TDAH et les paramètres de la maladie. MÉTHODES: Les parents de 120 enfants du groupe d'âge des 5­16 ans, (60 enfants ayant reçu un diagnostic de TDAH selon les critères du DSM-5 et 60 de leurs frères et soeurs en santé) inscrits consécutivement aux services ambulatoires en pédopsychiatrie d'un hôpital ont été interviewés à l'aide du questionnaire sur les habitudes de sommeil de l'enfant (CSHQ), et la gravité des symptômes du TDAH a été évaluée au moyen de l'échelle ADHD ­ RS. RÉSULTATS: Les perturbations du sommeil sont plus prévalentes chez les enfants souffrant du TDAH traités pharmacologiquement que chez leurs frères et soeurs en santé; elles diminuent avec l'âge et s'observent davantage dans la présentation à prédominance hyperactive/impulsive du TDAH. CONCLUSION: Les perturbations du sommeil sont plus prévalentes chez les enfants souffrant du TDAH traités pharmacologiquement, ce qui en fait un aspect important de la prise en charge du TDAH.

OC11 - Social support and intervention focus to minimize the effects of oncological disease in healthy siblings.

UNLABELLED: Theme: Complex health care and chronic disease management. INTRODUCTION: The entire process underlying cancer disease not only affects the sick child, but also the healthy siblings, which should be the centre of attention from parents and nurses. OBJECTIVES: To identify the impact of the disease in healthy siblings and know the importance of social support to minimise its impact in healthy siblings. METHODOLOGY: Descriptive, correlational study, a sample of 128 families of children with oncological diseases, between August 2011 and January 2013. In order to do our research we used the following tools: Assessment questionnaire of the children's oncological diseases impact on the family and Satisfaction Scale Social Support. RESULTS: Families with a higher impact on family structure and more accrued expenses showed greater impact of the disease in healthy siblings, the most satisfied with their social support showed less improvement. CONCLUSIONS: Nurses should seek interventions that increase the perception of the need for social support of families.

Neurological soft signs in euthymic bipolar I patients: A comparative study with healthy siblings and controls.

Neurological Soft Signs (NSS) are endophenotypic markers widely studied in schizophrenia and remain poorly evaluated in bipolar disorder. The aims of this paper were to determine the prevalence and scores of NSS in bipolar I patients, compared to healthy siblings and controls and to explore correlations with socio-demographic and clinical features of patients. This was a case-control study comparing 92 euthymic bipolar I patients, 44 of their healthy siblings and 60 control subjects. The neurological assessment was performed through the NSS scale validated by Krebs et al. (2000). Bipolar I patients were also assessed with the Bech-Rafaelsen Mania Scale (MAS), the Hamilton Depression Rating Scale (HDRS) and the Global Assessment of Functioning (GAF). The raters were not blinded to groups. The prevalence and the total score of NSS were significantly higher in bipolar I patients compared to their healthy siblings and controls. The sibling group had significantly higher NSS prevalence and total score than controls. No correlation was found between NSS total score and socio-demographic and clinical features of patients, except a negative correlation with the school level and the GAF score. In conclusion, bipolar I patients have motor and sensory signs, which are unrelated to their clinical features.

Psychological and practical difficulties among parents and healthy siblings of children with Duchenne vs. Becker muscular dystrophy: an Italian comparative study.

This study explored the burden in parents and healthy siblings of 4-17 year-old patients with Duchenne (DMD) and Becker (BMD) muscular dystrophies, and whether the burden varied according to clinical aspects and social resources. Data on socio-demographic characteristics, patient's clinical history, parent and healthy children burden, and on parent's social resources were collected using self-reported questionnaires administered to 336 parents of patients with DMD (246) and BMD (90). Parents of patients with DMD reported higher burden than those of patients with BMD, especially concerning feeling of loss (84.3% DMD vs. 57.4% BMD), stigma (44.2% DMD vs. 5.5% BMD) and neglect of hobbies (69.0% DMD vs. 32.5% BMD). Despite the burden, 66% DMD and 62.4% BMD parents stated the caregiving experience had a positive impact on their lives. A minority of parents believed MD has a negative influence on the psychological well-being (31.0% DMD vs. 12.8% BMD), and social life of unaffected children (25.7% vs. 18.4%). In the DMD group, burden correlated with duration of illness and parent age, and burden was higher among parents with lower social contacts and support in emergencies. In DMD, difficulties among healthy children were reported as higher by parents who were older, had higher burden and lower social contacts. In both groups, burden increased in relation to patient disability. These findings underline that the psychological support to be provided to parents of patients with MD, should take into account clinical features of the disease.