Between recurring sorrow and adaptive strength: a descriptive phenomenological study of family caregivers' experiences caring for children at home after the Fontan procedure in Indonesia.

PURPOSE: To explore the lived experiences of family caregivers caring for children at home after the Fontan procedure, using chronic sorrow theory as a sensitizing framework. To our knowledge, this is the first descriptive phenomenological study of post-Fontan home caregiving and the first application of chronic sorrow theory to this population. METHODS: A transcendental (descriptive) phenomenological design (Moustakas, 1994) was used. Ten mothers serving as primary caregivers were recruited through purposive and snowball sampling from a transit shelter for families of children with congenital heart disease in Jakarta, Indonesia. In-depth semi-structured interviews (30-60 min) were conducted in Bahasa Indonesia, transcribed verbatim, and analyzed in the original language using the modified Stevick-Colaizzi-Keen method, yielding 116 significant statements. Trustworthiness was established through member checking, analyst triangulation, an audit trail, and reflexive journaling, with reporting guided by COREQ. RESULTS: Three themes emerged: (1) being the primary caregiver, spanning fluid balance, nutrition, wound care, and anticoagulation management; (2) oscillating between sorrow and strength, encompassing emotional responses, spiritual coping, caregiving instinct, and support systems; and (3) still restricting the child's activities, alongside cautious, gradual reintegration. CONCLUSIONS: Post-Fontan home caregiving in Indonesia is characterized by recurring sorrow, adaptive growth, and protective vigilance consistent with chronic sorrow theory. In the absence of formal home nursing, mothers function as informal clinical co-providers. PRACTICE IMPLICATIONS: Competency-based discharge education, telenursing follow-up, peer-support integration, and culturally responsive activity guidance are needed to support families managing post-Fontan home care, particularly in low- and middle-income countries.