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1.
Child Abuse Negl ; 154: 106875, 2024 Jul 05.
Article in English | MEDLINE | ID: mdl-38970859

ABSTRACT

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.

2.
Autism Res ; 2024 Jul 08.
Article in English | MEDLINE | ID: mdl-38973707

ABSTRACT

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.

3.
Disabil Rehabil ; : 1-10, 2024 Jul 13.
Article in English | MEDLINE | ID: mdl-39001694

ABSTRACT

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.

4.
Hum Brain Mapp ; 45(11): e26788, 2024 Aug 01.
Article in English | MEDLINE | ID: mdl-39031478

ABSTRACT

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.


Subject(s)
Decision Making , Magnetic Resonance Imaging , Siblings , Humans , Male , Female , Decision Making/physiology , Young Adult , Adult , Brain Mapping , Social Interaction , Theory of Mind/physiology , Cooperative Behavior , Social Behavior , Brain/physiology , Brain/diagnostic imaging
5.
J Adolesc Health ; 2024 Jul 20.
Article in English | MEDLINE | ID: mdl-39033456

ABSTRACT

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.

6.
Res Dev Disabil ; 151: 104791, 2024 Aug.
Article in English | MEDLINE | ID: mdl-38954913

ABSTRACT

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.


Subject(s)
Down Syndrome , Emotions , Sibling Relations , Siblings , Social Support , Humans , Down Syndrome/psychology , Male , Female , Adult , Young Adult , Siblings/psychology , Adolescent , Sense of Coherence , Optimism/psychology , Surveys and Questionnaires
7.
J Res Adolesc ; 2024 Jul 14.
Article in English | MEDLINE | ID: mdl-39004803

ABSTRACT

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.

8.
Article in English | MEDLINE | ID: mdl-38992396

ABSTRACT

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 2016-2021 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.

9.
Child Abuse Negl ; : 106920, 2024 Jul 02.
Article in English | MEDLINE | ID: mdl-38960808

ABSTRACT

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.

10.
Autism Res ; 2024 Jun 28.
Article in English | MEDLINE | ID: mdl-38940216

ABSTRACT

Developmental antecedents of autism may affect parent-infant interactions (PII), altering the context in which core social skills develop. While studies have identified differences in PII between infants with and without elevated likelihood (EL) for autism, samples have been small. Here, we examined whether previously reported differences are replicable. From a longitudinal study of 113 EL and 27 typical likelihood infants (TL), 6-min videotaped unstructured PII was blind rated at 8 and 14 months on eight interactional qualities. Autism outcome was assessed at 36 months. Linear mixed-effects models found higher parent sensitive responsiveness, nondirectiveness, and mutuality ratings in TL than EL infants with and without later autism. PII qualities at 8 (infant positive affect, parent directiveness) and 14 months (infant attentiveness to parent, mutuality) predicted 3-year autism. Attentiveness to parent decreased between 8 and 14 months in EL infants with later autism. This larger study supports previous findings of emerging alterations in PII in this group and extends on this by detecting earlier (8-month) predictive effects of PII for autism outcome and a more marked trajectory of decreased social attentiveness. The findings strengthen the evidence base to support the implementation of early preemptive interventions to support PII in infants with early autism signs.

11.
Arch Sex Behav ; 2024 Jun 21.
Article in English | MEDLINE | ID: mdl-38907079

ABSTRACT

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.

12.
Pediatr Dermatol ; 2024 Jun 16.
Article in English | MEDLINE | ID: mdl-38881098

ABSTRACT

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.

13.
Infant Behav Dev ; 76: 101973, 2024 Jun 27.
Article in English | MEDLINE | ID: mdl-38941721

ABSTRACT

Autism Spectrum Disorder is a highly heritable condition characterized by sociocommunicative difficulties, frequently entailing language atypicalities that extend to infants with a familial history of autism. The developmental mechanisms underlying these difficulties remain unknown. Detecting temporal synchrony between the lip movements and the auditory speech of a talking face and selectively attending to the mouth support typical early language acquisition. This preliminary eye-tracking study investigated whether these two fundamental mechanisms atypically function in infant siblings. We longitudinally tracked the trajectories of infants at elevated and low-likelihood for autism in these two abilities at 4, 8, and 12 months (n = 29). We presented two talking faces (synchronous and asynchronous) while recording infants' gaze to the talker's eyes and mouth. We found that infants detected temporal asynchronies in talking faces at 12 months regardless of group. However, compared to their typically developing peers, infants with an elevated likelihood of autism showed reduced attention to the mouth at the end of the first year and no variations in their interest to this area across time. Our findings provide preliminary evidence on a potentially atypical trajectory of reduced mouth-looking in audiovisual speech during the first year in infant siblings, with potential cascading consequences for language development, thus contributing to domain-general accounts of emerging autism.

14.
Article in English | MEDLINE | ID: mdl-38928920

ABSTRACT

BACKGROUND: While the literature has highlighted the immense challenges in caring for family members, it is still unclear what the needs of family carers of persons with intellectual disability and challenging behaviours are and what has worked for them. This study aims to examine 60 parents' and siblings' experiences in managing the challenging behaviours of their adult family member with intellectual disability whilst living at home. METHODS: A qualitative grounded theory approach using semi-structured interviews will be adopted. Purposive sampling will be used to recruit family carers who live with adult persons with intellectual disability and use one community service in Hong Kong. Three special schools for persons with intellectual disability from northern China will be approached. RESULTS: This study will aim to provide an in-depth understanding of the experiences of family carers and compare the different circumstances they face when managing the challenging behaviours of their adult relatives with intellectual disability in their family home. CONCLUSIONS: Although this study targets adults with intellectual disability, the findings will provide a point of reference for adolescents and younger persons who exhibit demanding and challenging behaviours and live with their families. Recommendations can guide the development of appropriate strategies to strengthen services for family carers.


Subject(s)
Caregivers , Intellectual Disability , Parents , Siblings , Humans , Intellectual Disability/psychology , Intellectual Disability/therapy , Hong Kong , China , Adult , Parents/psychology , Siblings/psychology , Caregivers/psychology , Qualitative Research , Male , Female , Problem Behavior/psychology , East Asian People
15.
Children (Basel) ; 11(6)2024 Jun 15.
Article in English | MEDLINE | ID: mdl-38929313

ABSTRACT

Families of children with intellectual and developmental disabilities often face unique challenges that significantly impact their quality of life. Understanding the predictors of family quality of life (FQOL) is crucial for developing effective support systems and interventions. AIM: This study investigated the predictors that might influence the perception of families having a member with a disability regarding their quality of life (FQOL). METHOD: The sample consisted of 320 family members from the Riyadh region of Saudi Arabia. RESULTS: The overall results showed that participants' satisfaction with FQOL was at a moderate level. Further results indicated that variables associated with severity, type of disability, and the mother's age and education were significant predictors of the FQOL. CONCLUSIONS: These results emphasize the importance of considering the variables that impact FQOL, such as the severity and type of disability, and mother's related variables, when directing support to families with a member with a disability. The recommendations and limitations of the study were discussed.

16.
Ann Epidemiol ; 96: 53-57, 2024 Jun 22.
Article in English | MEDLINE | ID: mdl-38914248

ABSTRACT

PURPOSE: This prebirth cohort study examined the relationship between breastfeeding duration and behavioral problems in five-year-old Japanese children. METHODS: Study subjects were 1198 mother-child pairs. Data were collected using a self-administered questionnaire. Emotional, conduct, hyperactivity, and peer problems and low prosocial behavior were assessed using the Strengths and Difficulties Questionnaire (SDQ). RESULTS: Neither exclusive breastfeeding duration nor breastfeeding duration regardless of exclusivity was significantly associated with childhood emotional, conduct, hyperactivity, or peer problems or low prosocial behavior. In children with older siblings only, ≥ 4 months of exclusive breastfeeding was significantly inversely associated with hyperactivity problems (adjusted odds ratio [OR] = 0.57, 95 % confidence interval [CI]: 0.31-0.99). In children without older siblings, ≥ 4 months of exclusive breastfeeding was inversely significantly associated with low prosocial behavior (adjusted OR = 0.54, 95 % CI: 0.30-0.93). No interactions were observed between exclusive breastfeeding duration and the presence of older siblings regarding the two outcomes. CONCLUSIONS: No associations were found between breastfeeding duration and any of the outcomes based on the SDQ. Exclusive breastfeeding for ≥ 4 months may be inversely associated with hyperactivity problems in children with older siblings and with low prosocial behavior in children without older siblings.

17.
Int J Qual Stud Health Well-being ; 19(1): 2372864, 2024 Dec.
Article in English | MEDLINE | ID: mdl-38920102

ABSTRACT

PURPOSE: This study investigates how social categories work and intersect in siblings bereaved by drug-related deaths' (DRDs) stories about their relationships to their deceased brother or sister. The sociocultural embedded process of making meaning of the relationship with the deceased individual is essential in adapting to the loss. However, insight into such experiences of siblings bereaved by a DRD is scarce. Previous research has suggested that DRDs may be stigmatized life experiences for bereaved family members, and this paper furthers understanding of the experiences and issues involved in losing a sibling in a stigmatized death. METHODS: An intersectional analysis is applied to interviews with 14 bereaved siblings. By investigating and displaying how different categories intertwine, various positionings are identified. FINDINGS: Categorization of the deceased siblings as "addicts" constructs a troubled position. However, when "addict" intersects with the categories "unique," "sibling," and "uncle," the troubled subject's position as an "addict" can be concealed. CONCLUSIONS: Normative conceptions of addiction and DRDs produce troubled subject positions. By intermingling the category of "addict" with other categories, less problematic positions are created. Still, intersections of categories can also construct further complexities of remorse and self-blame for the bereaved siblings.


Subject(s)
Bereavement , Siblings , Humans , Siblings/psychology , Female , Male , Adult , Substance-Related Disorders/psychology , Middle Aged , Family/psychology , Young Adult , Adaptation, Psychological , Qualitative Research , Death
18.
J Autism Dev Disord ; 2024 Jun 11.
Article in English | MEDLINE | ID: mdl-38858310

ABSTRACT

This study explores the experiences of siblings of autistic adolescents within families. Without the novel insights generated from engaging with siblings of autistic adolescents within a qualitative framework, it can be challenging to develop strategies for practicing effectively with this group or structuring interventions with these families. Using a social constructivist approach and qualitative participatory methodology, the exploratory study was conducted using in-depth interviews with ten non-autistic siblings, analyzed via a thematic analysis method. The results reveal a common feeling of uncertainty and apprehension in the relationships, leading siblings to physical and emotional detachment from their autistic brothers or sisters. The research emphasizes the caregiving roles predominantly taken up by sisters, especially when the autistic sibling is a brother with intellectual disability. These roles exert substantial demands, with unclear boundaries suggesting potential role confusion. The findings have important implications for family practice, necessitating the need to address role conflict and promote role clarity. They also underscore the gendered nature of caregiving, advocating for support to sister-siblings in these roles. This study revealed the complexities of sibling relationships in families with a member who is an autistic adolescent sibling. The study suggests interventions that promote open family dialogues for a balanced approach to family roles, providing valuable guidance to practitioners to enhance siblings and family well-being.

19.
Reprod Biomed Online ; 49(1): 103969, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38744028

ABSTRACT

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.


Subject(s)
Direct-To-Consumer Screening and Testing , Humans , Adult , Male , United Kingdom , Young Adult , Direct-To-Consumer Screening and Testing/psychology , Adolescent , Genetic Testing , Female , Insemination, Artificial, Heterologous/psychology , Tissue Donors/psychology
20.
Circ Heart Fail ; 17(6): e011204, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38813684

ABSTRACT

BACKGROUND: Acute myocarditis has been genetically linked to dilated cardiomyopathy (DCM), but the clinical significance remains uncertain. We investigated the prevalence and long-term prognosis of DCM and heart failure (HF) among unselected patients hospitalized with acute myocarditis and their first-degree relatives compared with an age- and sex-matched cohort. METHODS: This was an observational study utilizing the Danish nationwide registries, where all patients with a first-time myocarditis diagnosis from 1995 to 2018 were identified and matched (on birth year and sex) with 10 controls from the general population. RESULTS: Totally 3176 patients with acute myocarditis and 31 760 controls were included (median age, 49.8 [Q1-Q3, 32.5-70.2] years; 35.6% female). At baseline, patients with myocarditis had a higher prevalence of DCM (7 [0.2%] versus 8 [0.0%]) and HF (336 [10.6%] versus 695 [2.2%]) than controls; P<0.0001 for both. Patients with myocarditis more often had siblings with DCM (12 [0.4%] versus 17 [0.05%]) or HF (36 [1.1%] versus 89 [0.3%]); P<0.0001, odds ratios 7.09 (3.38-14.85) and 2.92 (1.25-6.80), respectively, whereas parental DCM and HF did not differ among patients with myocarditis and controls. Patients with myocarditis had greater 20-year incidence of DCM, HF, and all-cause mortality (0.5% [0.3%-0.9%], 15% [13%-17%], and 47% [44%-50%]) compared with controls (0.06% [0.03%-0.11%], 6.8% [6.4%-7.3%], and 34% [33%-35%]; P<0.0001). Having a first-degree relative with DCM or HF was associated with increased long-term mortality among the patients with myocarditis (hazard ratio, 1.40 [1.11-1.77]) but not among the controls (hazard ratio, 0.90 [0.81-1.01]; Pdifference=0.0008). CONCLUSIONS: Acute myocarditis aggregates with DCM within families, where it carries a worsened prognosis. A differential association between parents and siblings (with sibling preponderance) could suggest that additional environmental factors are important for myocarditis development even in predisposed individuals.


Subject(s)
Cardiomyopathy, Dilated , Heart Failure , Myocarditis , Registries , Humans , Myocarditis/epidemiology , Myocarditis/genetics , Myocarditis/mortality , Male , Female , Middle Aged , Adult , Prevalence , Prognosis , Denmark/epidemiology , Cardiomyopathy, Dilated/genetics , Cardiomyopathy, Dilated/epidemiology , Cardiomyopathy, Dilated/mortality , Aged , Heart Failure/epidemiology , Heart Failure/genetics , Acute Disease , Risk Factors , Genetic Predisposition to Disease
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