RESEARCH PAPER
Disease-related social situation in family of children with chronic kidney disease – parents` assessment. A multicentre study
 
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1
Department of Paediatric Nephrology, Wroclaw Medical University, Poland
2
Clinic of Paediatrics, Nephrology and Endocrinology, Silesian Medical University, Zabrze, Poland
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Department of Pediatric & Adolescent Nephrology & Hypertension, Medical University of Gdansk, Poland
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Department of Nephrology, Kidney Transplantation and Hypertension, The Children’s Memorial Health Institute, Warsaw, Poland
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Department of Pediatric Cardiology and Nephrology, Poznan University of Medical Sciences, Poland
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Department of Pediatrics and Nephrology, Medical University of Warsaw, Poland
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Department of Nephrology, Children Hospital, Torun, Poland
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Polish­American Children’s Hospital, Jagiellonian University, Krakow , Poland
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Nephrology Division, Polish Mother’s Memorial Hospital Research Institute, Lodz, Poland
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Department of Pediatrics and Nephrology, Medical University of Bialystok, Poland
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Department of Pediatric Nephrology, Medical University of Lublin, Poland
CORRESPONDING AUTHOR
Katarzyna Kiliś-Pstrusińska   

Department of Paediatric Nephrology, Wroclaw Medical University, Poland
 
Ann Agric Environ Med. 2014;21(4):876–881
KEYWORDS
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.

Material 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.

Conclusions:
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.

 
REFERENCES (16)
1.
Copelovitch L, Warady BA, Furth SL. Insights from the Chronic Kidney Disease in Children (CKiD) study. Clin J Am Soc Nephrol. 2011; 6(8): 2047–2053.
 
2.
Wiedebusch S, Konrad M, Foppe H, Reichwald-Klugger E, Schaefer F, Schreiber V, et al. Health-related quality of life, psychosocial strains, and coping in parents of children with chronic renal failure. Pediatr Nephrol. 2010; 25 (8): 1477–1485.
 
3.
McKenna AM, Keating LE, Vigneux A, Stevens S, Williams A, Geary DF. Quality of life in children with chronic kidney disease-patient and caregiver assessments. Nephrol Dial Transplant. 2006; 21(7): 1899–1905.
 
4.
Tong A, Lowe A, Sainsbury P, Craig JC. Experiences of parents who have children with chronic kidney disease: a systematic review of qualitative studies. Pediatrics 2008; 121(2): 349–360.
 
5.
Kaptein AA, van Dijk S, Broadbent E, Falzon L, Thong M, Dekker FW. Behavioural research in patients with end-stage renal disease: a review and research agenda. Patient Educ Couns. 2010; 81(1): 23–29.
 
6.
Bruce MA, Beech BM, Sims M, Brown TN, Wyatt SB, Taylor HA, et al. Social environmental stressors, psychological factors, and kidney disease. J Investig Med. 2009; 57(4): 583–589.
 
7.
Schwartz GJ, Munoz A, Schneider MF, Mak RH, Kaskel F,Warady BA et al. New equations to estimate GFR in children with CKD. J Am Soc Nephrol. 2009; 20(3): 629–637.
 
8.
Harambat J, van Stralen KJ, Kim JJ, Tizard EJ. Epidemiology of chronic kidney disease in children. Pediatr Nephrol. 2012; 27(3): 363–373.
 
9.
Groothoff JW, Grootenhuis MA, Offringa M, Stronks K, Hutten GJ, Heymans HS. Social consequences in adult life of end-stage renal disease in childhood. J Pediatr. 2005; 146(4): 512–517.
 
10.
Tong A, Lowe A, Sainsbury P, Craig JC. Parental perspectives on caring for a child with chronic kidney disease: an in-depth interview study. Child Care Health Dev. 2010; 36(4): 549–557.
 
11.
Aldridge MD. How do families adjust to having a child with chronic kidney failure? A systematic review. Nephrol Nurs.J 2008; 35(2): 157–162.
 
12.
Goldstein SL, Graham N, Burwinkle T, Warady B, Farrah R, Varni JW.Health-related quality of life in pediatric patients with ESRD. Pediatr Nephrol. 2006; 21(6): 846–850.
 
13.
de Paula ES, Nascimento LC, Rocha SM. The influence of social support on strengthening families of children with chronic renal failure. Rev Lat Am Enfermagem. 2008; 16(4): 692–699.
 
14.
Reynolds JM, Garralda ME, Jameson RA, Postlethwaite RJ. How parents and families cope with chronic renal failure. Arch Dis Child. 1988; 63(7): 821–826.
 
15.
Morton RL, Tong A, Webster AC, Snelling P, Howard K. Characteristics of dialysis important to patients and family caregivers: a mixed methods approach. Nephrol Dial Transplant. 2011; 26(12): 4038–4046.
 
16.
de Paula ES, Nascimento LC, Rocha SM. Roles assessment in families of children with chronic renal failure on peritoneal dialysis. Int J Nurs Pract 2008;14(3): 215–220.
 
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