RESUMEN
PURPOSE: This study aimed to explore the relationship between family resilience, coping styles, and self-care among Chinese adolescents with epilepsy. DESIGN AND METHODS: A total of 1238 adolescents with epilepsy in nine tertiary hospitals in China participated in a cross-sectional survey conducted from May 2018 to March 2020. Structural equation modeling was used to analyze the mediating effect. RESULTS: The total scores for family resilience and coping styles were positively correlated with the total self-care status score of adolescents with epilepsy during their transition (r = 0.209, 0.202, P < 0.01). Family resilience was positively correlated with coping style (r = 0.450, P < 0.01). The modified model's fit index included χ2/df = 1.970, P = 0.001, RMSEA = 0.054, TLI = 0.973, CFI = 0.978, GFI = 0.941, AGFI = 0.917, NFI = 0.956, and IFI = 0.978. The confidence interval (CI) was 0.004-0.140 for the indirect effect and 0.033-0.306 for the direct effect. CONCLUSIONS: The self-care status of adolescents with epilepsy during the transitional period is closely related to coping style and family resilience. Coping style mediates family resilience and self-care status. PRACTICE IMPLICATIONS: Healthcare teams should pay attention to the coping ability of adolescents with epilepsy to help them transition smoothly and to improve family functioning. This study provides a theoretical basis for establishing transitional care programs for adolescents with chronic illnesses. The significant mediating effect of coping style should be emphasized in modalities of healthcare that include patient participation.
Asunto(s)
Epilepsia , Resiliencia Psicológica , Adaptación Psicológica , Adolescente , Adulto , China , Estudios Transversales , Salud de la Familia , Humanos , Participación del Paciente , Autocuidado , Encuestas y CuestionariosRESUMEN
PURPOSE: Given the importance of adolescents' participation in the care of their chronic diseases during their transitional period in the healthcare system, the present study investigated the degree of participation in healthcare behavior by Chinese adolescents with chronic epilepsy and identified factors that should be addressed by health interventions. METHODS: The study used a convenience sample of 1238 adolescent patients with epilepsy, who were hospitalized in 17 tertiary A-level children or maternal and child specialty hospitals in China between January 2017 and March 2020. Several scales were used to measure their degree of participation in healthcare behavior and the factors that influence it. Data collection was conducted after uniform training of the investigators. The adolescents who met the inclusion and exclusion criteria could scan the QR code of the questionnaire via a mobile phone. RESULTS: The age of the participants ranged from 12.2 to 17.8â¯years (mean 14.2â¯years), and the sample had a male-to-female ratio of 1.25:1. The patients' average total score of participation in healthcare behavior was 125.58 (SDâ¯=â¯12.25), which was lower than the norm for China. Their scores on the six dimensions of participation were highest for information interaction, followed in descending order by medical decision-making, treatment and care, appeal, diagnosis and treatment decision-making, and questioning supervision. Multiple linear regression found significant associations between health-care participation and five personal and disease variables (gender, age, course of disease, number of comorbid diseases, type of family structure), self-efficacy, and coping styles (cognitive-palliative and acceptance), which explained 52.1% of the variance in patients' total scores on participating in healthcare behavior. CONCLUSIONS: The participation of young Chinese patients with epilepsy in transitional healthcare behavior needs to be improved. Participation was positively associated with being female, a longer course of disease, fewer comorbidities, and living in a nuclear family. Patients who used cognitive-palliative and acceptance coping styles and those who had higher self-efficacy also had significantly higher levels of participation in healthcare behavior. The study provides useful reference points for adolescents with chronic disease to participate in healthcare programs, in order to achieve a smooth transition from childhood to adulthood.
Asunto(s)
Adaptación Psicológica , Conducta del Adolescente , Epilepsia/terapia , Participación del Paciente , Transición a la Atención de Adultos , Adolescente , Niño , China , Enfermedad Crónica , Estudios Transversales , Femenino , Humanos , Masculino , Encuestas y CuestionariosRESUMEN
OBJECTIVE: Epilepsy is one of the most common childhood-onset neurological disorder characterized by both seizures and the related comorbidities. The preparatory phase in transition refers to a dynamic process of identifying and resolving health issues to ensure seamless continuing care from childhood to adulthood. This study identifies the health issues of the preparatory phase in transition from children to adulthood using the Omaha System. METHODS: This prospective, single-center study enrolled 86 adolescents with epilepsy in China. The Problem Classification Scheme and Problem Rating Scale for Outcomes of Omaha System were used to evaluate transition-induced health problems. RESULTS: These health problems cover all four domains of the problem classification scheme of the Omaha System, and the specific distribution is related to the type of epilepsy. The results of the four-category classification evaluation showed that the most common health problem is health-related behavioral problems (46.1%), followed by psychosocial problems (23.0%), physiological problems (20.6%), and environmental problems (10.3%). The distribution of these health problems in generalized seizures, focal seizures, and generalized-focal seizures are significantly different (Pâ¯<â¯0.01). The results of the outcome rating scale showed that 83.4% of the children had minimal knowledge, 84.2% had inconsistently appropriate behaviors, and 86.7% had moderate symptoms. CONCLUSIONS: The health problems of patients with epilepsy during the preparatory phase of transition process from pediatric to adulthood should be emphasized. Identification of health problems though the Omaha System can improve management for adolescents with epilepsy, including prevention, nursing care, social support, and therapeutic interventions.