• Yu-Juan Zheng, Yong-Chao Hou, Hua Zhao, Xiao-Yun Wang, Yu-Dan Liu, Li Li, Liang Yu, and Ming-Mei Guo.
• Department of Cardiology, Shanxi Provincial People's Hospital, Taiyuan, 030012, People's Republic of China.
• Patient Prefer Adher. 2024 Jan 1; 18: 224922592249-2259.

ObjectiveTo conduct an in-depth exploration of the factors influencing unfulfilled needs in caregivers of patients with phenylketonuria.MethodsA rapid qualitative analysis approach was used to conduct semi-structured interviews with 16 caregivers of patients with phenylketonuria undergoing specialized dietary interventions, along with 5 medical professionals, within a designated phenylketonuria diagnosis and treatment center in Shanxi Province. Interview data were systematically organized, analyzed, and thematically extracted.ResultsFour primary themes were extracted: self-imposed constraints (including insufficient caregiver engagement, economic limitations, and stigma); interpersonal constraints (encompassing social isolation, inadequate social support networks, and lack of doctor-patient interactions); structural limitation factors (inadequate provision of specialized professional support systems, lack of medical dietary supplements, and deficiencies in national policies); and experiential limitation factors (encompassing sensory perceptions of medical dietary supplements and insufficient continuity in psycho-emotional care).ConclusionThe unfulfilled needs of caregivers of patients with phenylketonuria primarily manifest across four dimensions. Greater emphasis on addressing these needs is warranted, necessitating increased attention to patients with phenylketonuria and their caregivers. Specifically, the focus should be directed toward addressing their emotional requirements, along with proactive development of the medical service infrastructure. Such measures are imperative for reducing unfulfilled needs among caregivers of patients and enhancing their prognosis.© 2024 Zheng et al.

6 keywords...

hide…