Jul 2026· Child Psychiatry and Human Development· 0 citations· 37 references
Medicine
TL;DR
Co-designing SSIs with families has the potential to promote equitable access to evidence-based mental health care, and successful adaptations present a scalable framework for integrating SSIs into child mental health services across settings.
Abstract
Families of children with neurodevelopmental disorders often face limited access to evidence-based mental health care and supports, despite a disproportionately high prevalence of co-occurring conditions, such as anxiety, among these children. This study aimed to adapt a digital single-session intervention (SSI) designed to reduce parental accommodation of child anxiety by incorporating direct feedback from parents of neurodiverse children. In December 2024, five online human-centered design workshops were conducted with six parents, who provided input on the intervention's content (e.g., clarity, relevance) and acceptability (e.g., language, confidence to make a change). Responses were systematically coded and analyzed using content analysis. Across workshops, parents emphasized the need for interventions to be practically relevant, emotionally validating, and reflective of daily caregiving experiences, where "every day can feel like a wrestling match." Participants also raised concerns about the term "accommodation," which carries a positive connotation within the disability communities. Based on this feedback, revisions included incorporating neurodiversity-specific examples and parenting strategies and using descriptions of rather than labeling parenting behaviors. Through lived experiences, caregiver feedback revealed important adaptations needed to enhance intervention effectiveness and acceptability. Co-designing SSIs with families has the potential to promote equitable access to evidence-based mental health care, and successful adaptations present a scalable framework for integrating SSIs into child mental health services across settings.
The feasibility of yoga nidra as a complementary intervention for autistic children is supported and directions for future research are suggested, including larger trials and further co-design with the autistic community.
Tundi Loftus, Shu H Yau, Sophia Soares et al.· Research in Developmental Di...· 1 citation
The built environment is not neutral, it actively shapes human experience, behavior, and emotional regulation. For neurodivergent adults, particularly those diagnosed with Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD), traditional spaces often present significant physical and sensory barriers. This study aims to analyze how non-adapted environments, characterized by sensory overload, inadequate lighting, and high noise levels, act as factors of exclusion and cognitive fatigue. Methodologically, a narrative literature review was conducted, focusing on the intersection of Environmental Psychology, Neuroarchitecture, and Sensory Processing Disorder (SPD) in adulthood. The results indicate that ocularcentric and hyper-stimulating designs in corporate, residential, and academic settings exacerbate attentional fatigue, trigger severe emotional crises (meltdowns and shutdowns), and restrict the autonomy of neuroatypical individuals. It is concluded that incorporating sensory accessibility and salutogenic design principles is crucial to foster inclusion, preserve mental health, and promote independence during adulthood.
Thais Veloso dos Santos, Rodrigo da Silva Dulizio, Gabriela Costa Alves· Revista de Estudos Interdisc...· 0 citations
Despite growing recognition of the challenges faced by families of autistic children in the United Kingdom, existing research has largely focused on parental stress and individual burden, with comparatively limited qualitative attention to how caregiving demands, service systems, and sociocultural contexts interact to shape family quality of life. Addressing this gap, the present study explored caregivers lived experiences of raising autistic children in England, examining how caregiving demands, access to support, and adaptive responses operate within broader family and systemic contexts to influence family quality of life. Semi-structured interviews were conducted with 12 caregivers of autistic children from diverse ethnic backgrounds, including both White British and ethnic minority backgrounds families, and analysed using reflexive thematic analysis. Six interrelated themes were identified that characterised families’ experiences: (1) The 24/7 Care Ecology; (2) Culture, Religion, and Gender as Contextual Amplifiers (3) Building (and lacking) the Social Support Architecture; (4) Fighting the System(s); (5) Adaptive Resilience and Neuroaffirmation; and (6) Family Quality of Life Consequences. Findings illustrate how intensive and ongoing caregiving demands intersect with fragmented service systems and sociocultural expectations, particularly where cultural, religious, and gendered norms shaped caregiving roles and help-seeking. Notably, neuroaffirmation emerged as a protective and identity-affirming response for some families, reframing caregiving beyond deficit-oriented narratives and contributing to resilience within structurally constrained environments. These findings highlight the need for more accessible, coordinated, and family-centred autism support services that recognise the diverse contexts in which caregiving takes place.
Anum Farooq, Rachael Mason, V. Sclafani et al.· PLoS ONE· 0 citations
Background and Purpose: Dyslexia is one of the most common learning disorders affecting children’s academic and emotional development. In Malaysia, parents of dyslexic children often face multiple challenges due to limited awareness, inadequate institutional support, and societal stigma. This study aims to explore the lived experiences of parents raising children with dyslexia, focusing on the emotional, educational, and developmental challenges they encounter.
Methodology: Guided by Bronfenbrenner’s Ecological Systems Theory, a qualitative case study design was employed, involving five Malaysian parents of children formally diagnosed with severe dyslexia. Data were collected through semi-structured interviews and analyzed thematically following Braun and Clarke’s (2006) six-phase framework.
Findings: Five major themes emerged: (1) Initial Reactions and Delayed Recognition, (2) Emotional and Psychological Burdens, (3) Financial and Institutional Barriers, (4) Educational Challenges, and (5) Child Developmental Profile. Parents reported emotional fatigue, financial strain, limited school support, and diagnostic confusion.
Contributions: The findings highlight the urgent need for early screening, affordable intervention programs, and comprehensive teacher training on dyslexia. They also underscore the importance of collaborative partnerships between parents, educators, and policymakers to foster inclusive educational practices. The study contributes to the limited Malaysian literature by offering culturally grounded insights into parental experiences and emphasizing the role of empathy, awareness, and policy reform in supporting dyslexic learners.
Keywords: Parental experiences, dyslexia, parental challenges, inclusive education, Malaysia.
Cite as: Abd Karim, A. H., Muhammad, N., Kassim, S. K., Rais, H., & Ismail, N. A. H. (2026). Navigating the journey: Lived experiences of parents raising children with dyslexia in Malaysia. Journal of Nusantara Studies, 11(2), 37-54. http://dx.doi.org/10.24200/jonus.vol11iss2pp37-54
Aishah Hanim Abd Karim, N. Muhammad, S. Kassim et al.· Journal of Nusantara Studies...· 0 citations
Highlights What are the main findings? From a neurodiversity viewpoint, this systematic review summarized research on psychological therapies for children with neurodevelopmental disorders. Conventional therapies like Cognitive Behavioral Therapy (CBT) and Applied Behavior Analysis (ABA) have been shown in 34 studies to enhance cognitive functioning, emotional control, and adaptive skills. What is the implication of the main finding? The results encourage a shift toward tailored, strengths-based, and context-responsive therapies that acknowledge neurodivergent variations as a normal aspect of human variability rather than as deficiencies that need to be fixed. More varied neurodevelopmental populations should be included in future studies, better longitudinal designs should be used, and neurodivergent people should be actively included in the creation and assessment of therapies aimed at enhancing long-term functioning, involvement, and quality of life. Abstract Background/Objectives: This systematic review examines psychological interventions for children with neurodevelopmental disabilities within a neurodiversity framework, emphasizing that variations in cognition, behavior, and neurological functioning represent natural forms of human diversity rather than deficits. Methods: A systematic literature search was conducted across the PubMed, PsycINFO, and Google Scholar databases for studies published between 2010 and 2025. Studies were included if they focused on children with autism spectrum disorder (ASD), learning or intellectual disabilities (LD/ID), or specific learning disabilities (SpLD), and evaluated psychological or behavioral interventions. Results: A total of 34 studies met the inclusion criteria after screening and full-text review. The findings indicate that traditional interventions, such as Applied Behavior Analysis (ABA) and Cognitive Behavioral Therapy (CBT), demonstrate effectiveness in improving adaptive behavior, emotional regulation, and cognitive functioning. However, more recent approaches, including Naturalistic Developmental Behavioral Interventions (NDBI), person-centered therapies, and gamified interventions, show greater alignment with neurodiversity principles by emphasizing individual strengths, autonomy, and environmental adaptation. Conclusions: Despite promising outcomes, the evidence base remains uneven, with a predominant focus on autism and limited high-quality studies addressing other neurodevelopmental conditions. The review highlights the need for more rigorous, inclusive, and longitudinal research, as well as the integration of neurodivergent perspectives in intervention design. Overall, the findings suggest that interventions incorporating individualized, strengths-based, and context-sensitive adaptations are associated with more consistent improvements in both functional outcomes and quality of life.
K. Megari, Dimitra V. Katsarou, E. Mantsos et al.· Children· 0 citations
Caring for a child with ASD can demand a lot of energy and time. Parents may feel overwhelmed and stressed, a reality more pronounced for parents from minority groups. The present study conducted a preliminary needs assessment to acknowledge any prominent gaps in the literature. We asked: (a) What supports do racially, ethnically, and/or culturally diverse parents rely on to support their autistic children? (b) What are the associated challenges with seeking support? Parents participated in semi-structured interviews. The findings revealed that parents rely on services offered by healthcare providers, education specialists, and social service programs to support their children in the public and private sectors (e.g., ABA, SLP, OT). Five central issues/challenges emerged: (1) Long wait times associated with healthcare (2) High price of private care (3) Difficulty accessing information following the diagnosis of their child (4) Pervasive language barriers (5) Issues related to professionalism and competence from professionals.
Paul De Luca, Miranda D’Amico· International journal of soc...· 0 citations