RESPECT FOR AUTONOMY PADA ORANG TUA ANAK PENDERITA DOWN SYNDROM PENGGUNA HOME PROGRAM TELEREHABILITASI VIRTUAL REALITY
Rinna Dwi Lestari, dr. M. Lutfan Lazuardi., P.h.D; Dr. dr. Darwito., SH., SpB(K)Onk
2026 | Tesis | MAGISTER BIOETIKA
Teknologi
telerehabilitasi berbasis virtual reality (VR) berkembang dengan pesat sebagai
alternatif terapi bagi anak dengan Down syndrome (DS). Berbagai studi
klinis menunjukkan efektivitas penggunan VR dapat meningkatkan fungsi motorik
pada anak dengan DS. Namun demikian aspek bioetika khususnya respect for
autonomy pada orang tua anak penderita down syndrom pengguna
home program telerehabilitasi virtual reality sebagai pengambil
keputusan utama masih jarang diteliti. Pemanfaatan VR di rumah menuntut peran
orang tua dalam memahami manfaat, risiko, serta memilih jenis terapi yang
sesuai, sehingga diperlukan studi mendalam.
Penelitian ini
bertujuan untuk menganalisis permasalahan bioetika respect for autonomy
pada orang tua anak dengan down syndrome yang mengikuti home program
telerehabilitasi berbasis virtual reality, serta mengidentifikasi strategi
untuk mengatasi permasalahannya.
Penelitian ini menggunakan
pendekatan kualitatif dengan desain action research yang meliputi tahap
diagnosing, planning action, taking action, dan evaluating action. Penelitian
dilaksanakan di Perkumpulan Penyandang Disabilitas Indonesia (PPDI) Cabang Kota
Semarang dengan informan orang tua anak penderita down syndrome usia
5–12 tahun yang memiliki gangguan keseimbangan dan pernah atau sedang mengikuti
program telerehabilitasi menggunakan aplikasi SenMoR-VR sejak tahun 2023. Informan dipilih secara purposive sesuai kriteria inklusi. Data
dikumpulkan melalui wawancara mendalam secara luring maupun daring menggunakan
pedoman wawancara semi-terstruktur.
Hasil studi
menunjukkan bahwa permasalahan bioetika respect for autonomy pada anak down syndrome
dalam telerehabilitasi virtual reality menunjukkan bahwa keterlibatan
anak dalam pengambilan keputusan masih terbatas, sementara keputusan utama
tetap berada pada orang tua. Otonomi anak cenderung bersifat supported
dan relational autonomy, dipengaruhi oleh kapasitas kognitif anak,
kendala teknis, dan ketergantungan pada pendampingan orang tua. Strategi yang
dapat dilakukan adalah memperkuat peran orang tua sebagai fasilitator otonomi
anak melalui pemberian pilihan sederhana, komunikasi adaptif, kolaborasi dengan
tenaga kesehatan, serta peningkatan literasi teknologi dalam pelaksanaan
terapi.
Kata kunci: Telerehabilitasi; Virtual Reality; Home Program; Down
Syndrome; Bioetika; Respect for Autonomy
Virtual reality (VR)-based
telerehabilitation technology has rapidly developed as an alternative therapy
for children with Down syndrome (DS). Various clinical studies have
demonstrated that the use of VR can improve motor function in children with DS.
However, bioethical aspects, particularly respect for autonomy among parents of
children with Down syndrome who use VR-based telerehabilitation home programs
as primary decision-makers, remain underexplored. The use of VR at home
requires parents to understand the benefits, risks, and appropriate types of
therapy, highlighting the need for in-depth study.
This study aims to analyze
bioethical issues related to respect for autonomy among parents of children
with Down syndrome participating in a virtual reality–based telerehabilitation
home program and to identify strategies to address these issues.
This research employed a
qualitative approach with an action research design consisting of the stages of
diagnosing, planning action, taking action, and evaluating action. The study
was conducted at the Indonesian Association of Persons with Disabilities (PPDI)
Semarang City Branch. Informants were parents of children with Down syndrome
aged 5–12 years who had balance disorders and had previously participated or
were currently participating in a telerehabilitation program using the
SenMoR-VR application since 2023. Informants were selected purposively based on
inclusion criteria. Data were collected through in-depth interviews conducted
both offline and online using a semi-structured interview guide.
The findings indicate that
bioethical issues related to respect for autonomy in children with Down
syndrome undergoing VR-based telerehabilitation arise because children’s
involvement in decision-making remains limited, while primary decisions are
still made by parents. Children’s autonomy tends to take the form of supported
autonomy and relational autonomy, influenced by the child’s cognitive capacity,
technical constraints, and dependence on parental assistance. Strategies to
address these issues include strengthening the role of parents as facilitators
of children’s autonomy by providing simple choices, using adaptive
communication, collaborating with healthcare professionals, and improving
technological literacy in implementing therapy.
Keywords: Telerehabilitation; Virtual Reality; Home Program; Down Syndrome;
Bioethics; Respect for Autonomy
Kata Kunci : Telerehabilitasi; Virtual Reality; Home Program; Down Syndrome; Bioetika; Respect for Autonomy
