Autisme didefinisikan sebagai suatu gangguan perkembangan yang kompleks menyangkut komunikasi, interaksi sosial, dan aktivitas imajinasi. Anak penyandang autis mempunyai masalah gangguan dalam bidang komunikasi, interaksi sosial, sensoris, pola bermain, perilaku, dan emosi. Orangtua yang memiliki anak penyandang autis pasti tampak berbeda dari orangtua lainnya. Keberadaan anak autis dengan perilakunya di dalam keluarga menimbulkan stressor tersendiri bagi setiap anggota keluarganya. Tujuan penelitian: menguraikan secara mendalam pengalaman keluarga tentang beban dan sumber dukungan keluarga serta makna dalam merawat anak autis. Metode: Desain penelitian metode kualitatif dengan pendekatan fenomenologi. Teknik pengambilan partisipan dilakukan secara purposive sampling. Sebanyak enam partisipan berpartisipasi pada penelitian ini. Pengumpulan data dilakukan dengan cara teknik wawancara mendalam (indepth interview) dan menggunakan catatan lapangan (fi eld note). Hasil wawancara mendalam dan catatan lapangan dianalisis menggunakan metode Colaizzi. Hasil: hasil penelitian penelitian mengidentifikasi tujuh tema, yaitu beban psikologis, beban finansial, dukungan sosial, dukungan keluarga, perhatian tanpa pamrih, kecewa terhadap pemberi dukungan, dan takdir. Diskusi: Rekomendasi penelitian adalah perawat dapat meningkatkan kompetensi dalam melakukan pengkajian terhadap kebutuhan keluarga dalam merawat klien dengan autis sehingga semakin tepat dalam memberikan intervensi kepada keluarga terutama untuk meningkatkan kemampuan dan meminimalkan beban yang dirasakan keluarga anak dengan autis.
Kata Kunci: anak autis, keluarga, beban, sumber dukungan.
Autism is defined as a complex developmental disorder that includes communication, social interaction and imaginative activities. Children with autism have problems in communication, social interaction, sensory processing disorder, play patterns, behaviors and emotions. Parents who have a child with autism will be different from the other parents in every aspect. The existence of a child with autism and his/her behavior are stressor for each member of the family. Objectives: This study is aimed at explain in depth about family’s experience of burden and source of support and their significance family in caring for children with autism. Methods: This study employed qualitative method with phenomenological approach. Six participants were taken using purposive sampling. Data were collected through in-depth interviews and using field notes. The results of in-depth interviews and field notes were analyzed using Colaizzi’s method. Results: The results of the study identified seven themes, namely psychological burden, financial burden, social support, family support, selfless attention, disappointment over support giver, and destiny. Discussion: This study recommends that nurses improve their competence in assessing the needs of family in caring for clients with autism. So that they will provide interventions more precisely to family, particularly to increase competence and to minimize the burden carried by families of children with autism
Keywords: children with autism, family, burden, source of support.