Katarzyna Kiliś-Pstrusińska1, Anna Medyńska1, Piotr Adamczyk2, Irena Bałasz-Chmielewska3, Ryszard Grenda4, Agnieszka Kluska-Jóźwiak5, Beata Leszczyńska6, Ilona Olszak-Szot7, Monika Miklaszewska8, Maria Szczepańska2, Marcin Tkaczyk9, Anna Wasilewska10, Katarzyna Zachwieja11, Maria Zajączkowska12, Helena Ziółkowska6, Ilona Zagożdżon3, Danuta Zwolińska1. 1. Department of Paediatric Nephrology, Wroclaw Medical University, Poland. 2. Clinic of Paediatrics, Nephrology and Endocrinology, Silesian Medical University, Zabrze, Poland. 3. Department of Pediatric & Adolescent Nephrology & Hypertension, Medical University of Gdansk, Poland. 4. Department of Nephrology, Kidney Transplantation and Hypertension, The Children's Memorial Health Institute, Warsaw, Poland. 5. Department of Pediatric Cardiology and Nephrology, Poznan University of Medical Sciences, Poland. 6. Department of Pediatrics and Nephrology, Medical University of Warsaw, Poland. 7. Department of Nephrology, Children Hospital, Torun, Poland. 8. Polish-American Children's Hospital, Jagiellonian University, Krakow , Poland. 9. Nephrology Division, Polish Mother's Memorial Hospital Research Institute, Lodz, Poland. 10. Department of Pediatrics and Nephrology, Medical University of Bialystok, Poland. 11. Polish-American Children's Hospital, Jagiellonian University, Krakow, Poland. 12. Department of Pediatric Nephrology, Medical University of Lublin, Poland.
Abstract
INTRODUCTION AND OBJECTIVE: Chronic kidney disease (CKD) in children burdens life of patients and their families. Little is known about parents` assessment of families' social situation. However, the knowledge of the details of a patient's and his family's life standards might influence modification and optimization of applied therapy. Therefore, the main goal of the present study was to explore the selected elements of life situation of patients suffering with CKD as well as their parents, depending on the CKD stage and appropriate treatment. MATERIALS AND METHODS: Cross-sectional national study was conducted. A total of 203 children with CKD and 388 their parent-proxies (196 women and 192 men) were enrolled into this study. Patient data and questionnaires filled by both parents, concerning social-demographic parameters and assessment of changes in families after CKD diagnosis in the child, were analysed. RESULTS: CKD children are being brought up in proper families whose financial situation is not good. Children need help in process of education. Perception of current situation differed between both parents in the change of the income source, taking care of CKD child, change in social relations and evaluating relations with medical staff. Parents do not obtain proper support from social workers. CONCLUSION: Families of CKD children require support in area of financial and educational help for school children. The discrepancies in evaluation of family situation between mothers and fathers of ill children might be the source of conflicts possibly resulting in worsening the outcome for CKD children.
INTRODUCTION AND OBJECTIVE:Chronic kidney disease (CKD) in children burdens life of patients and their families. Little is known about parents` assessment of families' social situation. However, the knowledge of the details of a patient's and his family's life standards might influence modification and optimization of applied therapy. Therefore, the main goal of the present study was to explore the selected elements of life situation of patients suffering with CKD as well as their parents, depending on the CKD stage and appropriate treatment. MATERIALS AND METHODS: Cross-sectional national study was conducted. A total of 203 children with CKD and 388 their parent-proxies (196 women and 192 men) were enrolled into this study. Patient data and questionnaires filled by both parents, concerning social-demographic parameters and assessment of changes in families after CKD diagnosis in the child, were analysed. RESULTS: CKD children are being brought up in proper families whose financial situation is not good. Children need help in process of education. Perception of current situation differed between both parents in the change of the income source, taking care of CKD child, change in social relations and evaluating relations with medical staff. Parents do not obtain proper support from social workers. CONCLUSION: Families of CKD children require support in area of financial and educational help for school children. The discrepancies in evaluation of family situation between mothers and fathers of ill children might be the source of conflicts possibly resulting in worsening the outcome for CKD children.
Authors: Paulo Cesar Koch Nogueira; Tulio Konstantyner; Maria Fernanda Camargo de Carvalho; Cristine Campos de Xavier Pinto; Isabel de Pádua Paz; Vera Maria Santoro Belangero; Marcelo de Sousa Tavares; Clotilde Druck Garcia; Oreste Angelo Ferra Neto; Káthia Liliane da Cunha Ribeiro Zuntini; Marina da Rocha Lordelo; Samira Shizuko Parreao Oi; Renata Trindade Damasceno; Ricardo Sesso Journal: PLoS One Date: 2019-04-19 Impact factor: 3.240