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Research with siblings of children with congenital heart disease (CHD) is scarce, although more than one-third of them experience limitations on their quality of life. This interview study aims to explore the diagnosis-associated experience of German siblings of children with CHD, their interest in a potential intervention, and potential key topics and contextual conditions of such an intervention. Interviews with 10 siblings aged 10 to 21 and a respective parent were conducted from August to October 2021, resulting in 20 interviews. Negative experiences associated with CHD included concerns regarding hospitalization, health deterioration, and the death of the child with CHD, as well as burdens including reduced family activities, less parental attention and support, and extended family meals. Positive experiences included perceived positive consequences of CHD, such as strong family cohesion and empathy toward people with chronic illnesses. Furthermore, siblings experienced enhanced coping mechanisms, such as having conversations with friends and family about the high prevalence of CHD and successful treatment or using distractions such as entertainment or study. Siblings' reported interest in a future intervention included empathy, peer support, and studying medical information on CHD. These findings should be used for counseling and developing tailored interventions to support these siblings.
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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
BACKGROUND: The health and well-being of children in foster care are of high concern. A resource with which to disrupt maladaptation and promote healing are positive relationships among children and caregivers within the foster home. The research question was: Can an online intervention improve family hardiness and sibling relationships within foster care families? OBJECTIVES: To: (1) establish feasibility and acceptability of an online behavioral intervention within the foster family, (2) explore the effects of the intervention on relational quality outcomes, and (3) decompose the mechanisms driving improved family hardiness through mediation analysis. PARTICIPANTS AND SETTING: 95 currently fostering families across the US, participated in a 4-week, online, self-paced, behavioral intervention with an emphasis on the relationship between children residing in the home. METHODS: We employed a randomized control trial design with multiple regression analysis. Stress and relational quality outcomes were measured through psychometrically validated questionnaires on family hardiness, preparedness, and sibling relationships. RESULTS: Significant increase in family hardiness (Cohen's d = 0.97, p < 0.001) were found compared to the control group. Measures of a positive sibling relationship score increased significantly in the intervention group (d = 0.76, p < 0.002), mediating 32 % of the total effect in hardiness score. Sibling relationship served as a mediator for increasing indicators of family hardiness. CONCLUSIONS: Providing families the sibling-inclusive intervention caused an increase in positive indicators of sibling relationship and overall family hardiness. Researchers should consider the implications of supporting foster siblings and the affects their inclusion may have on outcomes for children in foster care.
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Background: Siblings of children with cancer have been shown to experience disruption in multiple domains including family, school, and friendships. Existing literature on siblings' experiences focuses on older children or on a broad range of ages. Aim: To explore the experience of siblings aged 8-12 years when their brother or sister is diagnosed with cancer. Method: A qualitative design incorporating phenomenology as the theoretical framework was used. Participants were recruited from across Australia via notices on social media sites and by the distribution of flyers. We used thematic analysis to analyze the data. Data were collected via semistructured interviews conducted either in person or online. Findings: A total of 13 siblings (7 boys and 6 girls) aged between 8 and 12 years (M = 9.8, SD = 1.6) were interviewed. Seven main themes were identified. These were "It was really hard": Reactions to the cancer diagnosis; "I'm really angry": Emotional and Physical Responses to siblings' treatment; "I pretend teddy is real": Play as an outlet; "It was very lonely": Missing their siblings; "I missed out on a lot of fun": Disruption of activities: School, sports, playdates, and parties; Change and Transition and "Making a difficult situation worse": COVID-19 Pandemic. Discussion: Findings extend the current understanding showing that younger siblings' developmental and cognitive skills impact their experiences of childhood cancer. Younger siblings outlined the many losses they experienced which demonstrated a need for a comprehensive and tailored program to support young siblings aged under 12 of children with cancer.
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Oropharyngeal squamous cell carcinoma is a distinct subtype of head and neck cancer that has become increasingly linked to human papillomavirus over the last four decades. Described is the case of two brothers diagnosed with human papillomavirus-positive oropharyngeal squamous cell carcinoma 6 years apart. The first brother, R.M., presented with an 8-month history of tonsillar swelling, found to be stage III human papillomavirus-positive oropharyngeal squamous cell carcinoma. Despite delayed treatment with chemoradiation, he developed metastatic disease and succumbed to his illness. The second brother, K.M., presented only 3 weeks after the development of neck swelling given his family history, which was also diagnosed as stage III human papillomavirus-positive oropharyngeal squamous cell carcinoma. Following prompt chemoradiation and neck dissection, K.M. has remained in remission for 9 years. Literature has yet to characterize this degree of familial clustering among human papillomavirus-positive oropharyngeal squamous cell carcinomas. Hence, this introduces the possibility of a genetic predisposition to human papillomavirus's oncogenesis in the oropharynx. This case emphasizes the importance for clinicians to stay vigilant of the family history of human papillomavirus, as well as poses significant implications for future research investigating the interaction of genetic aberrations on human papillomavirus's oncogenic process.
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BACKGROUND: This study compared the mortality risk of long-lived siblings with the U.S. population average and their spouse controls, and investigated the leading causes of death and the familial effect in death pattern. METHODS: In the Long Life Family Study (LLFS), 1,264 proband siblings (Mean age 90.1, SD 6.4) and 172 spouses (83.8, 7.2) from 511 U.S.-based families were recruited and followed over 12 years. Their survival function was compared with a birth cohort-, baseline age-, sex-, and race-matched pseudo sample from U.S. census data. To examine underlying and contributing causes, we examined in detail 338 deaths with complete death adjudication at the University of Pittsburgh Field Center through the year 2018. A familial effect on survival and death pattern was examined using mixed effect models. RESULTS: The LLFS siblings had better survival than the matched U.S. population average. They also had slightly but not significantly better survival than their spouses' (HR=1.18 [95%CI 0.94-1.49]) after adjusting for age and sex. Age at death ranged from 75-104 years, mean 91.4. The leading causes of death were cardiovascular disease (33.1%), dementia (22.2%), and cancer (10.7%). Mixed effect model shows a significant random effect of family in survival, with adjustment of baseline age and sex. There was no significant familial effect in the underlying cause of death or conditions directly contributing to death among siblings recruited by the University of Pittsburgh Field Center. CONCLUSION: Our findings demonstrate a higher survival in the LLFS siblings than the U.S. census data, with a familial component of survival. We did not find significant correspondence in causes of death between siblings within families.
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BACKGROUND: Sibling sexual abuse (SSA) is considered the most prevalent and longest-lasting type of interfamilial sexual abuse. The psychological implications of SSA may be felt throughout the harmed siblings' lifespan. Nevertheless, SSA receives very little therapeutic attention. OBJECTIVE: The present study explores how professionals dealing with the phenomenon see how to work with such cases. PARTICIPANTS AND SETTING: Fifty-two professionals working in the field of SSA participated in the study and completed closed and open-ended questionnaires. METHODS: A mixed-method research approach was implemented to quantitatively and qualitatively analyze the professionals' responses. RESULTS: The findings addressed three main intervention aspects. The first comprised the key unique therapeutic themes of SSA interventions that differentiate the SSA therapeutic process from other child sexual abuse cases. These included complex familial dynamics (e.g., secrecy climate, loyalty conflict, and intergenerational transmission of trauma) and at-home risk. The second addressed the therapeutic goals, including rebuilding family relationships and promoting safety strategies at home. The third was the SSA intervention structure, defining the structural elements of a holistic therapeutic model for family care. CONCLUSIONS: Based on the findings, a therapeutic model for family intervention in SSA cases was proposed, aiming to define service characteristics, determine who should be involved in the therapeutic process, and identify who should lead the intervention. The research contributes to the advancement of the theoretical and practical knowledge necessary to address the inherent familial complexities in SSA cases and the enhancement of the therapeutic orientation for professionals involved in such cases.
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Keloids are complex fibroproliferative disorders with diverse clinical presentations. Spontaneous keloids (SKs) represent a rare subtype that emerges without any known preceding traumatic event. This report presents a case of familial spontaneous keloids appearing on the thoracic region in two brothers with no prior history of trauma or keloid occurrence in other family members. The lesions exhibited progressive growth over several years but responded to cycles of triamcinolone treatment. This case underscores an unusual spontaneous occurrence of keloids in the thoracic region of two siblings, highlighting the potential genetic predisposition in the aetiology of these lesions. Additionally, this instance reinforces the concept that keloids can develop spontaneously without any apparent trauma in the affected area.
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This study evaluated developmental, psychiatric, and neurologic conditions among older siblings of children with and without autism spectrum disorder (ASD) to understand the extent of familial clustering of these diagnoses. Using data from the Study to Explore Early Development, a large multi-site case-control study, the analyses included 2,963 children aged 2-5 years with ASD, other developmental disabilities (DD group), and a population-based control group (POP). Percentages of index children with older siblings with select developmental, psychiatric, and neurologic conditions were estimated and compared across index child study groups using chi-square tests and multivariable modified Poisson regression. In adjusted analyses, children in the ASD group were significantly more likely than children in the POP group to have one or more older siblings with ASD, developmental delay, attention-deficit/hyperactivity disorder, intellectual disability, sensory integration disorder (SID), speech/language delays, or a psychiatric diagnosis (adjusted prevalence ratio [aPR] range: 1.4-3.7). Children in the DD group were significantly more likely than children in the POP group to have an older sibling with most of the aforementioned conditions, except for intellectual disability and psychiatric diagnosis (aPR range: 1.4-2.2). Children in the ASD group were significantly more likely than children in the DD group to have one or more older siblings with ASD, developmental delay, SID, or a psychiatric diagnosis (aPR range: 1.4-1.9). These findings suggest that developmental disorders cluster in families. Increased monitoring and screening for ASD and other DDs may be warranted when an older sibling has a DD diagnosis or symptoms.
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Autism sibling recurrence in prospective infant family history studies is ~20% at 3 years but systematic follow-up to mid-childhood is rare. In population and clinical cohorts autism is not recognized in some children until school-age or later. One hundred and fifty-nine infants with an older sibling with autism underwent research diagnostic assessments at 3 years and mid-childhood (6 to 12 years (mean 9)). We report the autism sibling recurrence rate in mid-childhood and compare developmental and behavioral profiles at mid-childhood and 3 years in those with earlier versus later recognized autism, and those who had, or had not, received a community autism diagnosis. The autism recurrence rate in this sample in mid-childhood was 37.1%, 95% CI [29.9%, 44.9%] and higher in boys than girls. Around half of those diagnosed with autism in mid-childhood had not received a diagnosis at 3 years. Later, diagnosis was more common in girls than boys. While some had sub-threshold symptoms at 3, in others late diagnosis followed a largely typical early presentation. Sibling recurrence based on community clinical diagnosis was 24.5%, 95% CI [18.4%, 31.9%]. Those who also had a community diagnosis tended to be older, have lower adaptive function and higher autism and inattention symptoms. Notwithstanding limitations of a single site study, modest sample size and limits to generalisability, autism sibling recurrence in family history infants may be higher in mid-childhood than in studies reporting diagnostic outcome at 3 years. Findings have implications for families and clinical services, and for prospective family history studies.
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Trastorno Autístico , Recurrencia , Hermanos , Humanos , Masculino , Femenino , Preescolar , Trastorno Autístico/genética , Niño , Lactante , Trastorno del Espectro Autista/genéticaRESUMEN
PURPOSE: To increase our understanding of child and parent characteristics, family functioning and main challenges in daily life in children and families in need of rehabilitation in the chronic phase of pediatric acquired brain injury (pABI). METHODS: Fifty-eight children (aged 6-16, 48% girls) were included at least one year post ABI. Demographics and questionnaire data regarding children's symptom burden, parents' emotional symptoms and family functioning were collected. Children and parents named their main pABI-related challenges in daily life, and these were categorized in accordance with the International Classification of Functioning, Disability and Health (ICF). Descriptive statistical analyses were performed. RESULTS: Parents' emotional symptom loads were high; 22.3% had moderate, moderate-severe or severe depression symptoms while the equivalent number for anxiety symptoms was 17.9%. Problematic family functioning was reported by 32.1% of parents. When asked about their main pABI-related challenges in daily life, 69% of children named school. The most frequent ICF chapters for children and parents were school education, energy and drive functions (mainly fatigue), and emotional functions. Codes spanned across all ICF-domains. CONCLUSIONS: Rehabilitation for pABI should have a broad, interdisciplinary, and family-centered approach, with school, fatigue, and emotional functioning of parents and children as potential core elements.
Rehabilitation for children with ABI in the chronic phase and their families should have a broad, interdisciplinary and biopsychosocial approach.The children's and parents' large focus on school functioning (including social aspects), emotional functioning, and fatigue in the current, heterogeneous sample indicates that these may be candidates for core elements in rehabilitation of children with acquired brain injury.The well-established focus in rehabilitation on «returning to school¼ after ABI may need to be broadened to «coping with school over time¼ for a subset of children.In addition to well-established factors that are important in rehabilitation and family-centered care, we suggest that caregiving burden of families and siblings' functioning should also be considered.
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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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Narrative is an important communication skill for sharing personal experiences and connecting with others. Narrative skills are often impacted in autism spectrum disorder (ASD) and have important consequences for social interactions and relationships. Subtle differences in narrative have also been reported among first-degree relatives of autistic individuals, suggesting that narrative may also be an etiologically important language-related skill that is influenced by genes associated with ASD. This study examined narrative ability and related visual attention during narration in ASD and first-degree relatives of individuals with ASD (siblings and parents) to understand how narrative and related attentional styles may be variably impacted across the spectrum of ASD genetic influence. Participants included 56 autistic individuals, 42 siblings of autistic individuals, 49 controls, 161 parents of autistic individuals, and 61 parent controls. Narratives were elicited using a wordless picture book presented on an eye tracker to record concurrent gaze. Findings revealed parallel patterns of narrative differences among ASD and sibling groups in the use of causal language to connect story elements and the use of cognitive and affective language. More subtle differences within the domain of causal language were evident in ASD parents. Parallel patterns in the ASD and sibling groups were also found for gaze during narration. Findings implicate causal language as a critical narrative skill that is impacted in ASD and may be reflective of ASD genetic influence in relatives. Gaze patterns during narration suggest similar attentional mechanisms associated with narrative among ASD families.
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BACKGROUND: Typically-developing siblings of individuals with Down Syndrome often experience complex emotions towards their sibling. This study explored how social support, personal resources (optimism, sense of coherence [SOC]), and individual variables (sex, religious affiliation, siblings' functionality) may impact emerging adult siblings' emotions toward their sibling with Down Syndrome. METHODS: Participants were 292 siblings of individuals with DS ranging in age from 18-27 (M=21.54, SD=2.50). Participants completed self-report questionnaires exploring optimism, SOC, support, and acceptance. RESULTS: Higher levels of support and optimism were positively associated with positive emotions, and higher SOC with lower levels of negative emotions. Siblings' functionality and religious affiliation interacted with variables to predict emotions. CONCLUSIONS: This study contributes to a greater understanding of how emotions may play a role in sibling relations during the emerging adulthood stage. It also provides unique insight into how religious affiliation may be associated with more positive outcomes for siblings.
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Síndrome de Down , Emociones , Relaciones entre Hermanos , Hermanos , Apoyo Social , Humanos , Síndrome de Down/psicología , Masculino , Femenino , Adulto , Adulto Joven , Hermanos/psicología , Adolescente , Sentido de Coherencia , Optimismo/psicología , Encuestas y CuestionariosRESUMEN
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
Rene Kaës (2007), an influential French psychoanalyst relatively unknown to English-speaking readers, extends the field of psychoanalytic investigation and practice to groups. Building on Klein, Anzeiu, Bion, and Lacan, Kaës presents a dual-axes theory in which early oedipal and sibling complexes structure unconscious dynamics of internal groups. According to Kaës, analytic group psychotherapy provides access to the phantasies, affects, and action tendencies contained within internal groups that would be otherwise inaccessible. While a few reference articles have appeared in the English literature, Kaës' bold assertions, core concepts, and praxis have not been subject to critical evaluation. I introduce Kaës' main ideas, demonstrate their influence on my group work, and by comparing two case examples, from his practice and mine, articulate our differences, some of which arise from different conceptions of and approaches to intersubjectivity. The discussion continues in the final section which briefly considers the nature of psychoanalytic learning and how we may employ the therapeutic group to reach this goal.
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Teoría Psicoanalítica , Terapia Psicoanalítica , Humanos , Terapia Psicoanalítica/métodos , Psicoterapia de Grupo/métodos , Psicoanálisis , Procesos de GrupoRESUMEN
BACKGROUND: Few studies have focused on the daily hassles among adolescent siblings living with individuals with intellectual disability (IwID) and the resulting conflicts between family members. The pathway from stress (hassles) to adolescents' violent acts has been largely ignored. OBJECTIVE: This study examined the link between hassles (independent variable) and violence against parents (dependent variable), with aggression as a mediator and social support as a moderator. PARTICIPANTS: Data were collected from November 2018 to February 2019 in Seoul, Gyeonggi Province, and Incheon City. Participants were 303 adolescent siblings of IwID (male: 47.2 %; female: 52.1 %). METHODS: Descriptive analysis was conducted using SPSS 24.0 and mediating pathways were determined using SPSS Macro 25.0. To verify the moderating role of social support, the entire sample was divided into two groups based on the mean value of social support and the mediating model was analyzed. RESULTS: In the low social support group (n = 140), the direct effect was not significant (ß = 0.0111, 95 % CI = -0.0044 to 0.0266), but the indirect effect was maintained (ß = 0.0096, 95 % CI = 0.0005 to 0.0234). However, in the high support group (n = 118), neither the direct effect (ß = 0.0106, 95 % CI = -0.0162 to 0.0373) nor the indirect effect (ß = 0.0126, 95 % CI = -0.0013 to 0.0301) was significant. Social support as a moderator was statistically significant compared with different paths in the two-group analysis. CONCLUSIONS: Counselling interventions are needed to alleviate the link between hassles and adolescent violence against parents through aggression.
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Discapacidad Intelectual , Hermanos , Apoyo Social , Humanos , Masculino , Femenino , Adolescente , República de Corea , Discapacidad Intelectual/psicología , Hermanos/psicología , Padres/psicología , Agresión/psicología , Estrés Psicológico/psicología , Violencia Doméstica/psicología , Violencia Doméstica/estadística & datos numéricos , Relaciones Padres-HijoRESUMEN
Disclosures of sibling sexual behavior (SSB) usually affect all family members but there remains, however, a paucity in studies on therapeutical family interventions and how they can initiate changes in families. This study was designed to explore relational impacts of SSB disclosures, goals for therapy and interventions that helped a family initiate the recovery process after a SSB disclosure. A single case study design was used to analyze a family's long-term therapy process. Data on this N = 1 study comprised 18 interviews with involved therapists, five interviews with involved family members, therapy files, and notes on family sessions. Data was analyzed using a thematic approach. Relational traumas were experienced in broken relationships, relationships under pressure and damaged trust between family members. Therapy goals were to (1) recreate family's safety, (2) help the family process the SSB consequences and (3) restore trust and search for relationship healing. Appropriate interventions to target the goals included individual-centered psycho trauma treatment as well as interventions for the parents, the involved siblings, and the uninvolved siblings, followed by sessions between the involved siblings and with the whole family. Therapy outcomes were found in reduced individual trauma symptoms, a recreated sense of family safety, the start of relational trauma processing, and newfound forms of sibling/family relationships. This study provides a unique and comprehensive insight into a family's healing process after SSB disclosures from the perspectives of both professionals and family members. The effective interventions identified in this study may provide tools for therapists working with these families. This study may also offer greater insights into both the abusive and mutual types of SSB.
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CONTEXT: Families are vital providers and recipients of pediatric palliative care (PPC) services. Understanding the scope and nature of evidence at the intersection of family science and PPC research is necessary to develop family-focused interventions that enhance child and family health. OBJECTIVES: Explore and describe the family-level impact of pediatric serious illness. METHODS: We conducted a librarian-assisted scoping review using Arskey and O'Malley's approach. We searched PubMed, Scopus, CINAHL, and EMBASE databases for empirical publications from 2016 to 2021 that focused on families navigating serious pediatric illness published in English. Two reviewers assessed eligibility, with discrepancies resolved by a third. We used Covidence and REDCap for data management and extraction. RESULTS: We screened 10,983 abstracts; 309 abstracts were included in full text screening. The final group of 52 citations was analyzed by the entire team. Most research was conducted in Western Europe and North America. The perspectives of parents of children with cancer were most frequently described; voices of seriously ill youth and their siblings were less often presented. Most of the research was descriptive qualitative, followed by descriptive quantitative. Few studies were mixed methods, inferential, or interpretive. Studies most often described parent, youth, and family experience with illness and less often explored family processes and relationships. Irrespective of the approach (i.e., qualitative, quantitative), few studies focused on families as the analytic unit or used family-level analysis techniques. Study participants were usually from local dominant populations and less often from historically marginalized communities. CONCLUSION: The robust, descriptive, and individual-level evidence describing family impact of serious pediatric illness provides a solid foundation for future research priorities. Stronger integration of family techniques and diverse family voices in pediatric palliative care research can clarify family processes, illuminate structural barriers, and inform interventions that are responsive to family needs. These steps will enhance the education, policy, and clinical provision of PPC to all who would benefit, thereby advancing health equity for children living with serious illness and their families.
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Sibling support for transgender and nonbinary (TNB) youth has the potential to improve TNB youths' mental health. A scoping review was conducted to map the knowledge of TNB youths' sibling relationships to create a foundation for the development of sibling-based support interventions for TNB youth. Nine included articles covered two areas: TNB youths' perceptions of sibling support (n = 5) and cisgender siblings' lived experience with a TNB sibling (n = 4). Siblings were perceived to support TNB youth, and their support was associated with less depression, suicidal ideation, and externalizing problems. Siblings of TNB youth lacked knowledge of TNB identities and support for their own understanding and acceptance. Siblings may experience unique stressors around their TNB sibling's changing gender identity. Overall, having a TNB sibling was perceived as a positive experience. None of the studies included intervention with or for siblings of TNB youth. Sibling support can be helpful for TNB youths' mental health. However, cisgender siblings' unique needs are rarely addressed. Providing cisgender siblings with knowledge of TNB identity, a place to process fears and concerns, and skills to navigate situations that may arise in relation to their sibling's gender, has the potential to benefit both siblings.