“At least here, someone listens to us”: Research participation as a form of substitute care in perinatal mental health in Pakistan

Abstract

Perinatal mental health conditions are prevalent in low- and middle-income countries but poorly integrated into maternal care. In resource-constrained systems, research participation may substitute for absent services, raising ethical and structural questions about boundaries between research and care. This qualitative descriptive interpretive study, conducted in a tertiary public hospital in Pakistan within a biomarker-based longitudinal study of perinatal anxiety and depression, interviewed 19 participants: 12 enrolled mothers, 4 consultant gynecologists, and 3 researchers. Data were analyzed in Urdu using reflexive thematic analysis. Four themes emerged: research as substitute care; trust, respect and interactional ethics; knowledge, awareness and reframing maternal health; and family power, structural inequality and limits of short-term intervention. Mothers described participation as providing investigations, information and respectful support rarely available in routine care. Trust developed through explanation, accompaniment and validation, though economic precarity and family-mediated decisions created ethical ambiguities. Participation increased awareness of maternal mental health and nutrition. Clinicians and researchers noted immediate benefits but could not address gender inequality, financial constraints or service gaps. Thus, perinatal mental health research in resource-constrained settings may function as provisional care rather than neutral data collection. Ethical research must engage systemic absences and ensure sustainability, responsible exit and integration into routine services.