Parents Of Individuals Research Articles

The validity and reliability study of the Repetitive Behavior Scale-Revised- Turkish Version in autism spectrum disorder

Objective: One of the diagnosis criteria for autism spectrum disorders (ASD) is repetitive behaviors and the severity of the repetitive behaviors is an important variable in identifying the severity of the disorder as well. In the current study the Repetitive Behavior Scale-Revised (RBS-R-TV), which is used to assess the severity and types of re-petitive behaviors in individuals with ASD, is adapted to Turkish and psychometric characteristics of the Turkish form are examined. Method: The participants consisted of 292 individuals with ASD, who were 3 to 23 years old (M=240, F=52). The parents of the participant individuals were asked to fill the RBS-R-TV. The ASD diagnosis of the participants were confirmed by Gilliam Autism Rating Scale-2-Turkish Form (TV-GARS-2). To measure validity of the scale; content, construct, criterion, and predictive validity analyses were conducted, and for reliability the scale’s internal consistency was examined by calculating the Cronbach’s alpha coefficients. Findings: The analyses showed that RBS-R-TV has good content validity, confirmatory factor analysis (CFA) revealed that it has a six factor structure, and model fit indices showed a good fit (χ2/df=2.00, RMSEA=0.059, SRMR=0.067, NNFI=0.94, CFI=0.94). Discriminant validity indicated that children with ASD had significantly higher scores than the children with intellectual disabilities in RBS-R-TV and predictive validity analysis showed that total scores obtained from RBS-R-TV significantly predicted the severity of autistic disorder. As the reliability analysis, internal consistency coefficients were between 0.73 to 0.94 for sub scales and the total score. Discussion: Analyses showed that RBS-R-TV is a valid and reliable tool for the use of diagnosticians, researchers, and educators.

Family Management of Down Syndrome: Cross-Cultural Perspectives

Aims With a worldwide incidence of one in every 1000 – 1100 live births, Down Syndrome (DS) is the most common genetic cause of intellectual disability. How families incorporate the child's special needs into everyday family life (family management) influences both child and family adaptation. The purpose of this analysis was to assess the internal consistency reliability of seven translations of the Family Management Measure (FaMM) and to examine cross-cultural differences in family management of DS. Methods 2740 parents of individuals with DS (2387 mothers and 353 fathers) from 11 countries completed the 53-item FaMM as part of a cross-cultural study of adaptation in families of individuals with DS. Selected descriptive statistics were computed. Reliability was assessed using Cronbach's alpha. Cross-cultural comparison of family management was addressed by rank ordering FaMM subscale means with a higher rank indicating greater ease in family management. Results Parents from Portugal, Spain and the US had mean scores reflecting greater ease in family management across all FaMM subscales; parents from Ireland, Italy, Korea, and Thailand had mean scores across all FaMM subscales indicating more problematic family management. The rankings for Brazil, Netherlands, and United Kingdom reflected areas of both management ease and difficulty. Conclusions Findings from this study suggest there are cross-cultural differences in family management of DS. More research is needed to fully understand if these differences are related to social determinants of health such as culture, societal attitudes towards DS and national approaches to integrating non-invasive prenatal testing into clinical practice.

Burden sharing in families to children, adolescents and young adults with ADHD: Analysis of ADHD Helpline in Swedish Clinical Services.

Background:ADHD causes impairment in several life contexts and may increase stress and burden of care amongst family members. There is a lack of studies regarding gender inequalities in burden sharing in families of individuals with ADHD.Objective:The aim of this study was to investigate gendered burden sharing in families who were in contact with an ADHD telephone helpline in Sweden. A further aim was to identify perceived difficulties that prompted contact with the helpline.Methods:During a period of 28 months (from January 2013 to April 2015), calls were consecutively registered by psychologists manning the helpline through an anonymous digital form. After exclusion of 60 incomplete forms out of 1,410 (4%), information on 1,350 calls was analysed.Results:The analysis indicated that mothers (82.7% of all callers) had a more important role as information-coordinators for children or adolescents with ADHD, as compared to fathers (13%) or other callers (4.3%). This pattern was also observed among the calls regarding young adults with ADHD. Helpline calls primarily concerned entitlement to academic support (57.9% of calls concerning children or adolescents) and healthcare services (80.6% of calls concerning young adults and adults).Conclusion:The study concludes that a perceived lack of accessibility to and/or coordination of the school and health care services may be a major stressor for parents of individuals with ADHD. The burden of care through coordination of services and information-seeking may be especially increased in mothers of children, adolescents, and young adults with ADHD.

A framework for understanding quality of life domains in individuals with the CDKL5 deficiency disorder.

The CDKL5 deficiency disorder (CDD) is a rare condition caused by spontaneous mutations on the cyclin-dependent kinase-like 5 (CDKL5) gene. It is a severe and complex disability that markedly affects the individual's health and wellbeing. This study aimed to identify the quality of life (QOL) domains important for individuals with CDD. Twenty-five parents of individuals registered in the International CDKL5 Disorder Database participated in semi-structured telephone interviews to explore areas that supported or challenged their child's QOL. Rett syndrome (RTT) is another severe genetically-caused neurodevelopmental disorder but is generally less severe than CDD. Qualitative data were analysed using directed content analysis, based on previously identified QOL domains for RTT that related to health and wellbeing, daily activities and community immersion and services. Each of the domains identified for RTT was represented in the CDD dataset overall and when the dataset was divided into three age groups: 3-5 years old; 6-18 years old; and older than 18 years. This is the first study to conceptualise factors important for individuals with CDD. Findings from this study will guide health professionals and other service providers who support individuals with CDD and will offer insight into choosing appropriate QOL instruments when measuring outcomes for this group.

Supporting Sexuality in Adults with Intellectual Disability—A Short Review

Sexuality in persons with intellectual disability (ID) is one of the frequently discussed topics of many scientific disciplines. Sexuality in persons with ID is determined by the specific features of ID, but also by the attitudes of the society and possibilities of persons with ID to establish intimate relationships, have sexual experience, and be able to express their own sexuality as an autonomous human need. The objective of the review was to present an analysis of published knowledge about supporting (and expression) of adults with ID in the area of sexuality (i.e. support provided to persons with ID as well as carers, professionals and family members providing support to persons with ID in the area of sexuality). Relevant studies (N = 47) identify the following as the most significant areas of supporting sexuality in adults with ID: sexual relationships, contraception, pregnancy and parenthood, sexually transmitted diseases, gay or lesbian relations/relationship, unacceptable and criminal sexual conduct, taking responsibility for sexual behavior, defining sexuality, values, body image, etc. Another important aspect is cooperation with close persons, carers and parents of individuals with ID. There is a possibility to use specific instruments for elementary assessment (SSKAT, SexKen-ID, ASK), the technique of social stories, and the content of educational program aimed at sexuality in persons with ID. Another option is sexual assistance and self-advocacy. Existing research focuses mainly on prevention of sexual abuse of persons with ID, but attention should also be paid to other aspects of their sexuality. Available evidence suggests that providing support to persons with ID in relation to their own sexuality is a difficult task. There is a need for further training and education of professionals, close persons and carers in order to provide qualified support to these clients.

Tranzycja uczniów z niepełnosprawnością intelektualną z edukacji na rynek pracy - perspektywa rodzica

The interactive model of vocational rehabilitation includes two key components: the rehabilitated individual and the vocational rehabilitation environment. The interaction of these two elements should contribute to the improvement of vocational competencies of people with disabilities[1]. Due to the fact that parents are considered as the second main contributors (just after teaching staff) of vocational training as well as life and vocational orientation of children and teenagers[2], the family environment can be treated as a significant part of the vocational rehabilitation of people with intellectual disability. Therefore, the aim of this study was to discover how parents of individuals with intellectual disability participate, if they do, in vocational training of their children. 
 Materials and Methods: The study was conducted among parents of special vocational schools graduates using the survey ASZ-S-R by W. Otrębski and K. Mariańczyk. The results are based on the answers of 71 parents/guardians of graduates of special vocational schools located in South-East part of Poland.
 Results: Nearly 88% of respondents declared that they supported the vocational preparation of their children by holding talks about various vocational activities. Circa 40% of them also provided help to their children with disabilities to find employment (e.g. by searching for job advertisements); nevertheless, over a quarter do not engage in such an activity at all. Active participation of parents of graduates with intellectual disability is necessary to prepare their children to undertake vocational activities.
 
 
 
 [1] W. Otrębski, Interakcyjny model rehabilitacji osób z upośledzeniem umysłowym, Wydawnictwo KUL, Lublin, 2007, s. 56.
 
 
 [2] J. Stankaitytė, N. Janonytė, J. Muriniene, A. Paszkowska-Rogacz, Etapy rozwoju dziecka i wyboru kariery zawodowej, [w:] Moje dziecko wybiera karierę zawodową, red. A. Paszkowska-Rogacz, Społeczna Wyższa Szkoła Przedsiębiorczości, Łódź, 2008, s. 19-33.
 

Health of parents of individuals with developmental disorders or mental health problems: Impacts of stigma

ObjectiveParents of individuals with developmental disorders or mental health problems often provide life-long care and support to their children, which negatively affects their health in part due to chronic stress. This study aimed to examine the experience of stigma as a source of chronic stress among parents of individuals with developmental disorders or mental health problems and the effect of stigma on parental health outcomes. MethodUsing data from the Survey of Midlife in the United States (MIDUS 2 and 3), we constructed a sample for a longitudinal analysis including 128 parents of individuals with developmental disorders (e.g., autism, cerebral palsy, epilepsy, Down syndrome, intellectual disabilities, brain injury, ADD/ADHD) or mental health problems (e.g., bipolar disorder, schizophrenia, major depression) and 2256 parents whose children were nondisabled. ResultsParents who had children with developmental disorders or mental health problems prior to the beginning of the study (i.e., at MIDUS 1) reported higher levels of stigma related to embarrassment/shame and daily discrimination than parents of nondisabled individuals ten years later at MIDUS 2, which in turn were associated with poorer parental health outcomes (poorer self-rated health and a greater number of chronic conditions) nearly a decade after that at MIDUS 3. ConclusionsThe findings suggest that the stigma associated with parenting a child with disabilities may be one mechanism that places such parents at risk for poor health. Efforts to alleviate the stigma associated with developmental disorders or mental health problems may have beneficial effects on health of parents of individuals with such conditions.

Links between looking and speaking in autism and first-degree relatives: insights into the expression of genetic liability to autism

BackgroundRapid automatized naming (RAN; naming of familiar items presented in an array) is a task that taps fundamental neurocognitive processes that are affected in a number of complex psychiatric conditions. Deficits in RAN have been repeatedly observed in autism spectrum disorder (ASD), and also among first-degree relatives, suggesting that RAN may tap features that index genetic liability to ASD. This study used eye tracking to examine neurocognitive mechanisms related to RAN performance in ASD and first-degree relatives, and investigated links to broader language and clinical-behavioral features.MethodsFifty-one individuals with ASD, biological parents of individuals with ASD (n = 133), and respective control groups (n = 45 ASD controls; 58 parent controls) completed RAN on an eye tracker. Variables included naming time, frequency of errors, and measures of eye movement during RAN (eye-voice span, number of fixations and refixations).ResultsBoth the ASD and parent-ASD groups showed slower naming times, more errors, and atypical eye-movement patterns (e.g., increased fixations and refixations), relative to controls, with differences persisting after accounting for spousal resemblance. RAN ability and associated eye movement patterns were correlated with increased social-communicative impairment and increased repetitive behaviors in ASD. Longer RAN times and greater refixations in the parent-ASD group were driven by the subgroup who showed clinical-behavioral features of the broad autism phenotype (BAP). Finally, parent-child dyad correlations revealed associations between naming time and refixations in parents with the BAP and increased repetitive behaviors in their child with ASD.ConclusionsDifferences in RAN performance and associated eye movement patterns detected in ASD and in parents, and links to broader social-communicative abilities, clinical features, and parent-child associations, suggest that RAN-related abilities might constitute genetically meaningful neurocognitive markers that can help bridge connections between underlying biology and ASD symptomatology.

Expressed emotion and impulsiveness in mothers of children with Fragile X Syndrome and Down Syndrome: The relation to behavioral problems in their offspring

BackgroundFragile X Syndrome (FXS) and Down Syndrome (DS) are common causes of Intellectual Disability (ID). Mothers of individuals with FXS sometimes have the premutation condition which makes them display neurocognitive signs, such as impulsiveness impairments, while mothers of DS individuals, as a group, do not have impairments. Although behavior problems in individuals with ID may be related to high Expressed Emotion (EE) in parents, parenting in families with ID members has been little explored. AimTo explore the relationship between a mother’s EE and impulsiveness, in mothers of individuals with FXS and DS, with behavior problems in their offspring. MethodA questionnaire was developed to collect data about impulsiveness and EE in mothers, along with information about behavior problems in ID individuals. ResultsEE scores were associated with behavior problems in their offspring for both samples. Mothers with the premutation showed higher scores in EE than mothers of DS individuals. However, impulsiveness scores were not different between both parental groups, and were related to EE scores. ConclusionsEE is a parental feature that is possible to modulate and seems to be related to behavior problems in ID individuals. More research should be carried on to create interventions to reduce this attitude in parents of ID individuals.

PERAN ORANG TUA DALAM MENGENALKAN ANGGOTA TUBUH PADA ANAK USIA PRASEKOLAH DENGAN AUTISTIK

The rise of cases of sex exploitation in children is a clear proof of the lack of knowledge of children about sex education that they should have obtained from the first year by their parents. Entering the age of 1-2 years, the ability to speak, curiosity, and the ability to remember began to increase and quite well. Now is the right time to continue adding vocabulary and hone the child's ability to remember and speak, by starting to introduce body parts like hair, nose, knees, heels, and so on. Autism is a term used to describe a type of pervasive disorder in a child that results in a disturbance or delay in cognitive, language, behavioral, communication and social interaction. Providing education and understanding is a challenge for parents themselves. This study illustrates how the roles performed and displayed by individual autistic parents in introducing body parts. The method used in this study is a qualitative method with a case study approach with observations and interviews conducted to parents of individuals with autism. The results of this study indicate that the maximal parental role produces autistic autonomous individual behavior. Independent in terms of understanding the body parts, maintaining the hygiene of the body parts and understanding the body parts that can be touched and not touched.Keywords: Autistic, Preschool age, Body Parts, Parents

Content Validity of the Parentship Protocol: A Multidimensional Intervention for Parents of Adolescents with High-Functioning Autism Spectrum Disorder

The Parentship protocol is a short-term intervention program in occupational therapy for parents of adolescents with High-Functioning Autism Spectrum Disorder (HFASD). Its purpose is to promote parental resilience and enhance adolescents’ participation in daily life. Aims: To explore and analyze the perceptions of occupational therapists and parents of individuals with HFASD, regarding the content of the protocol and its theoretical framework. Methods: Implementation of a phenomenological qualitative approach using two focus groups (six occupational therapists and five parents). A transcript-based analysis was used for analyzing the data. Results: The degree of agreement regarding the potential purposes and contents of the protocol was high. In addition, nine themes were raised and led to changes and additions in the protocol. Conclusions: The study provided support for content validity and acceptability of the Parentship protocol. Future research should test the feasibility of this new intervention program.

Socialization of Disabled People with Sports Activities and Their Problem Encountered in Participating in Sports Activities

The purpose of this research is to determine the encountered problems of people with disabilities who live in Malatya and participate in sportive activities the aged 10-15 years. For this purpose, a total of 35 parents of individuals 11 diagnosed with autism, 6 diagnosed with physical disability, 10 diagnosed with Down’s syndrome and 8 diagnosed with mild mental disability participated in the study. This study was a qualitative study and it was provided that face-to-face interviews with parents of disabled individuals were made, considering that disabled people would not be able to give correctly answers. In the process of obtaining the data, in-depth qualitative interviews were conducted with the parents through semi-structured open-ended questions. Parents of people with Down's syndrome and mild mental disability have expressed a positive view of the fitness of sports facilities, while the parents of autistic and physically handicapped individuals indicate that their facilities and equipment are insufficient. In addition, all parents have expressed that their children willingness to participate in sports activities but they stated that the trainers were inadequate in terms of knowledge, competence and equipment. As a result, the parents are satisfied with participation of their children with disability in sports activities and they are socialized with sports, there are positive changes in their clothing, walking and talking, the facilities are partly sufficient but children’s coaches are inadequate knowledge, experience and equipment, suffer from the communication problems with the municipality staff in the vehicle when traveling.

Longitudinal effects of caregiving on parental well-being: the example of Rett syndrome, a severe neurological disorder.

Little longitudinal research has examined parental well-being in those with a child with specific genetic developmental disorder although the associated severe neurological impairments and multiple physical comorbidities likely place substantial burden of caregiving on the parent. We aimed to examine longitudinally the well-being of parents of individuals included in the Australian Rett Syndrome Database over the period from 2002 to 2011 using the Short Form 12 Health Survey. Residential remoteness, the child being a teenager at baseline, having frequent sleep disturbances or behavioural problems, and the type of MECP2 gene mutation were each associated with later poorer parental physical well-being scores. Being a single parent or on a low income was also associated with later poorer physical well-being, while the child having enteral feeding was associated with later poorer emotional well-being. Both the physical and emotional well-being of the parent improved if the child was living in out-of-home care. Our findings suggest that some opportunities do exist for clinicians to help optimise parental well-being. Being alert to the possibility and need for management of a child's sleep or emotional disturbance is important as is awareness of the additional likely parental burden as the child moves through adolescence into early adulthood and their need for additional support at that time. However, the findings also highlight the complex nature of parental well-being over time in parents of children with a severe neurological disorder and how they may be affected by a range of inter-related family and child factors.

Brief Report: Sibling Feelings Toward their Brother or Sister With or Without Autism or Intellectual Disability.

The present study examined 97 adolescent siblings of individuals with autism spectrum disorder (ASD), intellectual and developmental disabilities (IDD), or no disabilities. Siblings reported on their feelings toward their brother or sister (anxiety, hostility, and positive affect), and parents reported on general optimism, child behavior problems, and perceptions of how the child impacts the family, including the sibling. There were no differences between siblings of individuals with ASD and siblings of individuals with IDD on any sibling self-reported feelings toward their brother or sister, though parents of individuals with ASD reported significantly less optimism and more negative perception of the child's impact on the family than did parents of children with IDD or no disability.

9. A case control study to compare the occurrence of non alcoholic fatty liver disease between parent of NAFLD patients and non nafld individuals

Background and Aims: Prevalence of Non Alcoholic Fatty Liver Disease (NAFLD) is increasing worldwide. The etiology is believed to be multi-factorial with a substantial genetic component. However, the heritability of NAFLD is undetermined. This study was aimed to compare occurrence of NAFLD in parents of NAFLD patient. Methods: An observational case control study carried out in a tertiary care Centre. Total 80 (40 parents of NAFLD patients as cases and 40 parents of non NAFLD individuals as control having BMI > 23) were studied. All were analyzed with anthropometry, SGOT/SGPT, USG Abdomen and fibroscan. Data was compared using descriptive statistics. Results: Mean SGPT in parents of case group (37.65 ± 22.42) was statistically significant (p = 0.013) as compared to control group (26.5 ± 14.48). Fibroscan liver stiffness among case group (7.52 ± 3.74) was significant p = 0.042, as compared to control group (6.07 ± 2.38). Waist hip ratio in mothers was found significant p < 0.0001 with values of 0.88 ± 0.03 and 0.81 ± 0.03 in case and control group respectively. Fatty liver was detected in 60% parents (24 of 40) of NAFLD patients and 20% parents (8 of 40) of non NAFLD group which was statistically significant (p < 0.03). However we didn’t find significant correlation between laboratory parameters of these two groups of fatty liver. Serum glucose concentration, total cholesterol and triglyceride level were not found statistically significant. Conclusions: Family members of NAFLD patients should be considered at high risk for NAFLD. These data suggest that familial factors are a major determinant of NAFLD. Studies examining the complex relations between genes and environment in the development and progression of NAFLD are warranted. The authors have none to declare.

Prevalence of Macrothrombocytopenia in Healthy College Students in Western India.

Macrothrombocytopenia is being increasingly described across the globe. There is paucity of data on the prevalence of this condition from different parts of India. 10,047 healthy college students from the city of Surat in western India were investigated for macrothrombocytopenia i.e. those with Mean platelet Volume of > 11 fL and platelet count of less than 150 × 109/L. ABO blood groups, complete blood counts, peripheral smear examination and haemoglobinopathy work up was also done. Siblings and parents of the macrothrombocytopenic individuals were also studied when available. Bleeding assessment tool of International society of thrombosis and haemostasis were applied to see if there were excessive bleeding in macrothrombocytropenia patients. One hundred and ninety-six students (1.95%) had asymptomatic macrothrombocytopenia. More female students (P < 0.0001) had this condition and blood group A was under represented (P = 0.019) with this condition. Prevalence of macrothrombocytopenia was not related to ethnic subgroups to which the students belonged to, nor was it linked to presence of any haemoglobinopathy gene. In 38 of the 52, 1st degree relatives studied macrothrombocytopenia was confirmed at least in one of them. Excessive bleeding in none of the individuals with macrothrombocytopenia was noted. Asymptomatic macrothrombocytopenia is rare in western parts of India and affects 1.95% of the healthy population. Females were over represented with this condition raising a suspicion of X linked dominant inheritance. Underrepresentation of blood group A in this condition requires further study.

Identifying the Correlates and Barriers of Future Planning Among Parents of Individuals With Intellectual and Developmental Disabilities.

Although individuals with intellectual and developmental disabilities (IDD) are living longer lives, fewer than half of parents of individuals with IDD conduct future planning. The correlates and barriers to future planning must be identified to develop targeted interventions to facilitate future planning. In this study, 388 parents of individuals with IDD responded to a national, web-based survey. Participants who were older, more educated, attended more parent training and support activities, and had children with fewer functional abilities, were more likely to engage in future planning. Reported barriers to future planning included: (a) lack of available services, (b) financial challenges, (c) reluctance of family members, (d) lack of time, (e) the emotional nature of future planning, (f) inertia, and (g) a lack of family members to be caregivers. Implications for policy, practice, and future research are discussed.

Randomized controlled trial of a brief acceptance and commitment training for parents of individuals diagnosed with autism spectrum disorders

We examined the effect of a brief Acceptance and Commitment Therapy (ACT) based intervention for eighteen parents of children with autism compared to a matched randomized control group. The treatment group demonstrated statistically significant improvements (p < 0.05) and large effect sizes on six of eight self-report measures following treatment, including the Acceptance and Action Questionnaire-II (p = 0.0318, d= 0.94), Beck Depression Inventory-II (p = 0.0239, d= −1.01), Cognitive Fusion Questionnaire-13 (p = 0.0485, d= 0.83), Mindful Attention Awareness Scale (p = 0.007, d= 1.29), Internalized Shame Scale (p = 0.0052, d= −1.37), Personal Values Questionnaire-II (p = 0.0159, d= 1.11), White Bear Suppression Inventory (p = 0.1732, d= 0.46), and Frieburg Mindfulness Inventory (p = 0.2506, d= 0.32). These results suggest that a brief ACT-based intervention may be efficacious in treating the psychological challenges of parents of children with autism.

Effectiveness of Mobile Skill Teaching Software for Parents of Individuals with Intellectual Disability

Mobile skill teaching software has been developed for the parents of the children with intellectual disability to be used in teaching daily life skills. The purpose of this research is to investigate the effectiveness of the mobile skill teaching software developed for the use of the parents of the children with intellectual disability. In accordance, the effectiveness of the software has been tested using multiple probe design with probe conditions across subjects’ research methodology which is one of the single subject research models. Four adults with intellectual disability and their parents participated in the study. The parents participating in the study taught their children with intellectual disability how to cook cheese omelet with the use of the software. The data obtained as a consequence of the experimental study suggests that the activities carried out by the parents with the use of the software were found to be effective.

Barriers and facilitators to clinical trial participation among parents of children with pediatric neuromuscular disorders

Pediatric rare disease presents a challenging situation of high unmet need and a limited pool of potential clinical trial participants. Understanding perspectives of parents of children who have not participated in trials may facilitate approaches to optimize participation rates. The objective of this study was to explore factors associated with parental interest in enrolling children with pediatric neuromuscular disorders in clinical trials. Parents of individuals with Duchenne or Becker muscular dystrophy and spinal muscular atrophy were recruited through advocacy organizations, a registry, and clinics. These parents ( N = 203) completed a questionnaire including assessments of barriers and facilitators to clinical trial participation, parents' interest in trial participation, and their perceptions of others' views about participation in a clinical trial. Trial interest in participating parents was high (64% combined group). The most highly endorsed barrier to participation was the possibility of receiving placebo, followed by not having enough information on risks and trial procedures. Compared to parents of children with Duchenne or Becker muscular dystrophy, parents of children with spinal muscular atrophy endorsed significantly more information and knowledge barriers. The greatest facilitators of participation were (1) confidence in improving disease understanding and (2) guarantee to receive the treatment after a successful trial. A logistic regression model, χ2 (4, n = 188) = 80.64, p < .001, indicated that higher perceived barriers and more frequent trial communication by the provider were associated with lower interest, while positive trial perceptions by the child's providers and concordance in trial perceptions among those close to the decision-maker were associated with higher interest. We found high parental interest in pediatric neuromuscular trials that was tempered by concerns about the potential for randomization to a placebo arm. Participants perceived that their trial participation would be facilitated by additional education and guidance from their clinicians. Yet, intentions were negatively associated with frequency of provider communication, perhaps reflecting waning parental interest with a greater understanding of limitations in trial access, increased sophistication in their understanding of trial design, and appreciation of potential burden. To support parents' informed decisions, it is important to educate them to evaluate the quality of research, as well as providing lay information explaining the use of placebo, trial processes, and potential barriers to long-term drug access. Our findings should inform the development of targeted educational content, clinician training, and decision support tools.