Developmental experiences of female patients diagnosed with Peutz-Jeghers syndrome in childhood: a qualitative study based on the social ecological model in China
Hui Wang, Beining An, Jing Xu, Yanhua Han, Tingting Li, Jingwen Ding, Ranran Chai, Min Zheng, Qinzhu Tang, Guangqin Jin, Jihua Huang, Yu KangObjectives
This study aimed to explore the developmental experiences and nursing needs of female patients diagnosed with Peutz-Jeghers syndrome (PJS) during childhood, thereby providing references for developing targeted nursing interventions.
Design
Using purposive sampling, face-to-face semistructured interviews were conducted with female patients diagnosed with PJS in childhood. Data were gathered and examined using directed content analysis based on phenomenological research principles.
Setting
The study was conducted in Shanghai, China.
Participants
In total, 35 female patients diagnosed with PJS in childhood were interviewed.
Results
Three themes and nine subthemes emerged: microsystem (self-perception and social barriers, challenges related to marriage and childbearing, physiological and psychological distress and treatment adherence pressure), mesosystem (inadequate family communication and support, as well as social isolation) and macrosystem (uneven distribution of medical resources, weak social support networks, as well as inadequate policy and insurance coverage).
Conclusions
Female patients with childhood-onset PJS face diverse and complex challenges within their social environments. Healthcare professionals should recognise the physical and psychological impacts of the illness, provide appropriate interventions to address patients’ needs and help maintain ecosystem stability.