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Published on: August 1, 2019
Family Voices in Digital Patient Navigation for Cervical Cancer Care in Indonesia
Hana Rizmadewi Agustina1, Hartiah Haroen2, Tuti Pahria3
1Department of Fundamental Nursing, Faculty of Nursing, Universitas Padjadjaran, Bandung 45363, West Java, Indonesia.
None:
Background: Cervical cancer remains a significant health issue in Indonesia, where structural barriers, fragmented information, and sociocultural norms continue to hinder timely diagnosis and treatment. Families play a central role throughout the illness journey, yet their perspectives are often overlooked in the development of digital patient navigation systems. This study explored family experiences, caregiving challenges, and expectations for a family-centered digital navigation model, DIVA.ID, by integrating Digital Health frameworks and Family Systems Theory. Methods: A qualitative descriptive approach was employed through semi-structured, in-depth interviews with 18 purposively selected family caregivers of women with cervical cancer at a major referral hospital in West Java. Participants were selected because they were directly involved in daily care, treatment decisions, logistical support, or emotional assistance. Interviews were conducted between August and October 2025 and continued until thematic saturation was reached, as indicated by repetition of categories and the absence of new major codes in the final interviews. Data were analyzed using inductive-deductive content analysis guided by Elo and Kyngäs, with five researchers conducting independent coding, iterative code comparison, consensus meetings, and theoretical mapping. Results: Four main themes emerged: (1) family involvement in decision-making, including collective discussion, shifting authority roles, and patient autonomy; (2) caregiver burden, involving physical exhaustion, psychological distress, social restriction, stigma, financial pressure, and employment disruption; (3) psycho-spiritual coping mechanisms, including emotional sharing, prayer, crying, patience, and surrender to God; and (4) digital healthcare needs, covering BPJS guidance, treatment information, scheduling, communication pathways, shelter support, and mental-spiritual support. Mapping these themes to Digital Health frameworks and Family Systems Theory clarified how DIVA.ID could translate family experiences into practical navigation functions. Conclusions: This study provides empirical foundations for a culturally sensitive, family-centered digital navigation model in Indonesia. Rather than demonstrating effectiveness, the findings identify design requirements for DIVA.ID that should be tested in subsequent feasibility, usability, and intervention studies.
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