Disease-related social situation in family of children with chronic kidney disease – parents` assessment. A multicentre study

Katarzyna Kiliś-Pstrusińska 1, Anna Medyńska 1, Piotr Adamczyk 2, Irena Bałasz-Chmielewska 3, Ryszard Grenda 4, Agnieszka Kluska-Jóźwiak 5, Beata Leszczyńska 6, Ilona Olszak-Szczot 7, Monika Miklaszewska 8, Maria Szczepańska 2, Marcin Tkaczyk 9, Anna Wasilewska 10, Katarzyna Zachwieja 11, Maria Zajączkowska 12, Helena Ziólkowska 6, Ilona Zagożdżon 3, Danuta Zwolińska 1
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 - Polish­American 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 - Polish­American Children’s Hospital, Jagiellonian University, Krakow, Poland
12 - Department of Pediatric Nephrology, Medical University of Lublin, Poland
Ann Agric Environ Med
2014; 21 (4):
ICID: 1129951
Article type: Original article
 
 
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.

DOI: 10.5604/12321966.1129951
PMID 25528938 - click here to show this article in PubMed
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