Developmental Disabilities Experience Research Articles

Experiences of siblings of individuals with developmental disabilities: A meta-synthesis of qualitative studies.

While the impact of developmental disabilities (DD) on the entire family is increasingly recognized, the experiences of typically developing (TD) siblings often remain overlooked. Recently, an understanding of siblings' experiences has been developed through qualitative studies. This review aims to synthesize existing qualitative evidence regarding the experiences of TD siblings of individuals with DD. A systematic search across four databases (PubMed, CINAHL, PsycINFO, and Web of Science) identified studies reporting empirical qualitative data on the experiences of TD siblings of adolescents and young adults with DD, including English studies from 2014 to 2023. A quality appraisal was performed using the Critical Appraisal Skill Programme (CASP) checklist. The data were synthesized using thematic synthesis. Nine studies met the inclusion criteria. Six key themes and 13 subthemes were identified from the included articles. These themes included (i) encountered difficulties, (ii) intrapersonal response, (iii) interpersonal interaction, (iv) challenging family dynamics, (v) strategies and support, and (vi) accepting and adapting to my reality. This review synthesizes qualitative evidence on the experiences of TD siblings, highlighting how their situation shapes their lives. The findings suggest that TD siblings of individuals with DD experience difficulty due to their sibling's disability. These experiences influence various aspects of their lives, including personal, school/work, and family dynamics, ultimately affecting TD siblings' adaptation processes. Our findings emphasize the need for targeted interventions to support the psychological well-being of TD siblings of individuals with DD.

College Students With Intellectual and Developmental Disabilities' Experiences, Conception, and Development of Emotional Wellness.

This study aimed to understand the ways in which college students with intellectual and developmental disabilities (IDD) experience and develop their understanding of emotions and emotional wellness. Semi-structured interviews with college students with IDD were conducted. The research team utilized consensual qualitative research (CQR) to analyze interviews and came to consensus in generating domains, core ideas, and a cross-analysis to answer the research question, "What are the experiences of college students with IDD in developing an understanding of emotions and emotional wellness?" Findings suggest college students with IDD have experience developing and maintaining their emotional wellness, though they may experience barriers prior to and during college enrollment. Limitations and implications for future research are discussed.

Resilience and stigma in mothers of children with emotional and behavioural difficulties

BackgroundMothers of children with intellectual and developmental disabilities (IDD) experience frequent and high levels of stigma from family, friends, and members of the public. This stigma can have a negative impact on mothers’ psychological well-being, their social circle, and their relationship with their child. AimsThe present study aimed to establish if there was a relationship between emotional and behavioural difficulties and stigma, and if resilience, social support and parental adjustment acted as a protective factors in this relationship. Methods108 mothers of children aged between four and 16 years old with IDD participated in a cross-sectional online survey. Mothers were asked about their child’s behavioural difficulties, their experience of stigma, in addition to completing assessments of resilience, social support, and parental adjustment. ResultsOverall child behavioural and emotional difficulties, and the sub domain emotional problems, hyperactivity, and low prosocial behaviour were found to be a significant independent predictors of stigma. Resilience was associated with stigma and moderated the relationship between low prosocial behaviour and stigma. There was no evidence that social support or parental attachment acted as protective factors in the relationship between child behavioural difficulties and stigma. ConclusionsThe results of the present study extend the findings of previous research by providing evidence that families of children with a range of developmental disabilities experience stigma, in particular when children show high levels of emotional problems and hyperactivity, and low levels of prosocial behaviour. The present study also provides evidence that resilience is associated with stigma and resilience-building interventions may be beneficial to reduce the negative impact of stigma.

Effectiveness of Adaptive Care Plans for Children with Developmental Disabilities During Outpatient Clinic Appointments.

Children with developmental disabilities require more medical experiences than typically-developing children and struggle to cooperate with healthcare encounters. Adaptive care plans, delivered by child life specialists, are individualized patient-centered plans created to address the challenges that children with developmental disabilities experience. The current study evaluated if adaptive care plans affect the psychosocial outcomes of children with ASD compared to those with other developmental disabilities. One-hundred and sixty children between 3 and 18years of age (child's Mage = 8.10, SD = 3.75) participated. Although children with developmental disabilities who had adaptive care plans did not generally experience less psychosocial distress; children with ASD who had adaptive care plans experienced fewer challenges with anxiety and coping compared to children with ASD who did not have adaptive care plans.

Children with developmental disabilities experience higher levels of adversity

ObjectiveIndividuals with developmental disabilities (DD) experience significant health disparities. An overlooked risk factor for health disparities in the DD population is adverse childhood experiences (ACEs). The purpose of this study was to generate population prevalence data about level of adverse experiences among children with DD in comparison to children without DD and the extent to which potential confounders may influence observed associations between adversity and child DD status. MethodsData from the 2011-12 National Survey of Child Health (NSCH) were analyzed to estimate prevalence of adversity among families of children with and without DD, age 3–17 years (N = 62,428; DD = 2622). Level of adversity was assessed via parent response to the Adverse Family Experiences questionnaire. Bivariate and multinomial logistic regressions were utilized to investigate the relationship between adverse family experiences (AFEs) and child DD status, adjusting for covariates. ResultsChild DD status was significantly and independently associated with higher probability of reporting 1–2 AFEs (RRR = 1.28, 95% CI 1.06, 1.5) and 3+ AFEs (RRR = 1.60, 95% CI 1.16, 2.21). ConclusionThis study documents significant disparities in adversity among children with DD using a population-based sample. These adversities potentially compromise successful transition to adulthood and overall health outcomes.

Analysis of the Issues and Needs of Parents of Children With Developmental Disabilities in Japan Using Focus Group Interviews.

The number of Japanese children with developmental disabilities (DDs) has seen a steady increase in recent years. The parents and families of children with DD experience distress both at the time of DD diagnosis and afterward. This study aimed to elucidate the issues and needs of the parents of children with DD to facilitate the development of effective support strategies necessary to help the family handle the special needs of their child with DD. Japanese-speaking parents with children who were aged 3-14 years and currently being treated in a hospital for DDs were invited to participate in one of three focus groups. A trained moderator led each 90-minute audio-recorded group using a semistructured interview guide. All transcripts were coded using thematic content analysis. Six categories of parents' significant issues were identified, with three of the categories classified as critical needs. The issues and needs identified in this study are useful for developing an effective family support program and a related performance framework. Key concerns include providing relevant information support, providing counseling and consultation support for parents and siblings, and providing resources to children with DD that are necessary to help them deal effectively with their disabilities.

Assessment of toileting difficulties in adults with intellectual disabilities: An examination using the profile of toileting issues (POTI)

A lack of toileting skills is one of many impairments that individuals with intellectual and developmental disabilities experience. Unfortunately, little research has focused on problems in this area including assessment, function, and treatment. A newly developed checklist, the Profile of Toileting Issues ( POTI), is being considered for use to screen for toileting issues in this population, and to identify potential functions to target in treatment. The purpose of the current study was to examine the reliability of the POTI. Internal consistency was sound ( α = .83) and interrater reliability was significant. The implications of these findings are included.