关键词: 肛门闭锁；照顾者；照顾者反应；定性研究

Abstract: Objective: To explore the experience and medical needs of caregivers of children with imperforate anus. Methods: In-depth interviews were conducted on ten caregivers of children with imperforate anus. Theme analysis was employed. Results: Five themes regarding caregiver reactions emerged from the data, namely, negative psychological experience (difficulties in accepting the disease, guilty for the sick children, role strain of caregivers, perception of stigma and concealment of the disease); caregiver burden (financial burden, impact on health, disturbance to daily life, lack of family support, influence on social relationships); worries about the prognosis and the growth of the sick children (uncertainty about the prognosis and the worries about the quality of life and the mental health of the sick children); benefits from disease care (positive psychological hint, positive adaptation and acceptance, being more active in searching for medical information, perceiving social support, achieving self-growth); the desire to get more support from medical staff (needs for professional support and psychological support, the expectation for various communications). Conclusion: A multidisciplinary medical team is needed to enhance the communications between caregivers and the medical staff, so as to decrease the negative psychological experience of caregivers and improve their perception towards benefits from disease care.

Key words: imperforate anus; caregivers; caregiver reaction; qualitative research