Caregiving Experiences of Spouses and Families of Pregnant Women with Thalassemia in a Community Context, Uttaradit Province
Keywords:
caregiving experience family caregiver, pregnant women, Thalassemia, community contextAbstract
Introduction: Thalassemia in pregnant women creates complex caregiving demands for spouses and family members, yet the lived experiences of families as primary caregivers remain understudied in Thai lower-northern community contexts.
Aims: To describe and understand the caregiving experiences of spouses and family members of pregnant women with thalassemia, to identify caregivers' emotional and psychological burdens, and to determine their unmet support needs from the healthcare system in a community context in Uttaradit Province.
Methods: A descriptive phenomenological study grounded in Husserlian philosophy was conducted with 13 key informants consisting of spouses and primary family caregivers of pregnant women with thalassemia (gestational age ≥28 weeks), selected through purposive and snowball sampling. Data were collected via semi-structured in-depth interviews from February to May 2026 and analyzed using Colaizzi's seven-step method. Trustworthiness was established through member checking, peer debriefing, thick description, and reflexivity journaling.
Results: Five themes emerged: (1) Caregivers' understanding of thalassemia gained mainly through the pregnant woman rather than directly from healthcare personnel; (2) Practical caregiving roles assumed by the family; (3) Emotional and psychological burden of caregivers; (4) Family system adaptation relying on extended family and community networks; and (5) Unmet needs for healthcare system support among families.
Conclusion and recommendations: Families of pregnant women with thalassemia face multidimensional caregiving burdens encompassing practical, emotional, and social dimensions, underscoring the need for further formal healthcare system support. Nurses should develop family-centered practice guidelines that systematically assess caregiver needs and establish accessible, direct communication channels within community antenatal care.
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