Diagnosis Disclosure Support for Caregivers of Children With Autism

Korea University

Status: Not yet enrolling

Conditions: Autism Spectrum Disorder

Treatments: Behavioral: SHARE : Supporting Honest Autism Recognition and Education; Behavioral: One-session seminar

Study type: Interventional

Funder types: Other

Identifiers

NCT07328438

IRB-2025-0578-01

00209635 (Other Grant/Funding Number)

Details and patient eligibility

About

The purpose of this randomized controlled pilot study is to develop and evaluate an online diagnosis disclosure support intervention for caregivers of 7- to 12-year-old children with autism spectrum disorder (ASD) in South Korea. This intervention is designed to support caregivers who are contemplating, preparing for, or carrying out disclosure of their child's ASD diagnosis to the child. This study has three primary aims: (1) to evaluate the acceptability and feasibility of the intervention; (2) to examine clinically meaningful effects of the intervention on caregivers' psychological well-being and psychosocial adjustment (e.g., emotion regulation, loneliness/social isolation, and adaptation to life transitions), parenting competence and attitudes (e.g., parenting self-efficacy, parenting role satisfaction, and parenting stress), and autism-related knowledge and social perceptions (e.g., autism knowledge and perceived autism-related stigma); and (3) to assess whether the effects of the intervention are maintained one month after program completion.

Full description

As school-aged children with autism spectrum disorder begin to recognize differences between themselves and their neurotypical peers, they develop questions regarding their identity and belonging. During this critical developmental period, receiving a clear and supportive explanation of their diagnosis can promote self-understanding, encourage self-advocacy, and enhance psychosocial adjustment. However, caregivers often face significant barriers to disclosing the diagnosis, stemming from fear of stigma, uncertainty about appropriate timing and language, and concerns about causing emotional distress. As a result, caregivers may delay or avoid disclosure, despite potential benefits for the child. Therefore, developing evidence-based interventions to support caregivers in diagnosis disclosure is significant, yet few studies offer guidance for caregivers, leaving disclosure decisions and processes largely to individual families.

The purpose of this randomized controlled pilot study is to develop and evaluate an online diagnosis disclosure support intervention for caregivers of 7- to 12-year-old children with ASD in South Korea, a developmental period when children go through increasing cognitive, social, and identity-related challenges. This study pursues three objectives: (1) to evaluate the acceptability and feasibility of the diagnosis disclosure support intervention; (2) to examine clinically meaningful effects on caregiver's outcomes across domains such as psychological well-being and psychosocial adjustment, parenting competence and attitudes, and autism-related knowledge and social perceptions; and (3) to assess the sustainability of these effects through a one-month follow-up after program completion.

40 caregivers of children with ASD enrolled in mainstream schools (grades 2-6) in South Korea will be recruited and randomly assigned to either an intervention group (n=20) or a waitlist control group (n=20). The intervention group will participate in a five-week, online group-based diagnosis disclosure support program consisting of weekly 60-minute sessions, which will be recorded for fidelity monitoring. The waitlist control group will receive an abbreviated one-session online seminar and program materials upon completion of the final follow-up assessment. Both groups will complete online self-report measures at three timepoints: baseline (T1), immediately following the intervention group's program completion (T2), and at a one-month follow-up (T3). This study holds the potential to improve caregivers' well-being and support healthy family communication by providing evidence-based guidance to facilitate developmentally appropriate disclosure for children with ASD in South Korea.

Enrollment: 40 estimated patients

Sex: All

Ages: 7 to 12 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Caregivers of children aged 7-12 (Grades 2-6) attending mainstream schools in South Korea
• Caregivers of children with previous medical diagnosis of ASD
• Caregivers with no prior experience of participation in diagnosis disclosure support programs
• Caregivers in agreement with the need for a ASD diagnosis disclosure support intervention program, with commitment to continuous and sincere participation

Exclusion criteria

• Caregivers of children with significant intellectual disability
• Caregivers of children with significant language delay

Trial design

Primary purpose: Treatment

Allocation: Randomized

Interventional model: Parallel Assignment

Masking: Single Blind

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40 participants in 2 patient groups

Intervention Group

Experimental group

Description:

Caregivers will participate in an online diagnosis disclosure support intervention delivered via telehealth over five weekly 60-minute group sessions. This program is designed to support caregivers' decision-making and communication regarding disclosure of an ASD diagnosis to their child, including key considerations for disclosure and the development of an individualized narrative to explain the diagnosis. Sessions will include psychoeducation and interactive activities to promote engagement and skill practice.

Treatment:

Behavioral: SHARE : Supporting Honest Autism Recognition and Education

Waitlist Control Group

Active Comparator group

Description:

A one-session, group-based psychoeducational seminar delivered via telehealth will be provided to the control group. This abbreviated session will provide a condensed overview of the SHARE program, and caregivers will receive the complete SHARE program materials.

Treatment:

Behavioral: One-session seminar