Social Impact of Dialysis on Children and Their Families

Transcription

1 DOI /s z ORIGINAL ARTICLE Social Impact of Dialysis on Children and Their Families Jameela Abdulaziz Kari & Majed Alzahrany & Basem El-Deek & Muhanad Maimani & Sherif El-Desoky Received: 27 May 2013 /Accepted: 26 August 2013 # Dr. K C Chaudhuri Foundation 2013 Abstract Objectives To evaluate the social consequences of dialysis on children and their parents. Methods From January through June 2012 short structured interviews with parents or caregivers of children on peritoneal dialysis (PD) or hemodialysis (HD) who were followed up at King Abdulaziz University Hospital, King Faisal Specialty Hospital and Research Center, or the Kidney Center at King Fahad Hospital were conducted. Data were analyzed using the Statistical Package for the Social Sciences. Results Thirty six children (22 boys and 16 girls) and their families were included. The mean (SD) age of the children was 11.5±6.87 y, and the mean (SD) duration of dialysis was 28±11.32 mo. Only one third of the families had the opportunity to choose the modality of dialysis. Both modalities of dialysis had a negative effect on fathers jobs in over 50 % of the cases. Similarly, both modalities of treatment had a considerable impact on the quality of care provided by the mothers to other family members. There was no difference between the two modalities on the frequency of admissions. Conclusions Both PD and HD had a negative impact on fathers jobs and on the level of care provided by mothers to the rest of the family. Keywords Chronic kidney disease. Hemodialysis. Kidney transplantation. Peritoneal dialysis. Social impact J. A. Kari: M. Alzahrany : M. Maimani : S. El-Desoky Department of Pediatrics, King Abdulaziz University, Jeddah, Kingdom of Saudi Arabia B. El-Deek Department of Medical Education, King Abdulaziz University, Jeddah, Kingdom of Saudi Arabia J. A. Kari (*) Department of Pediatrics, King Abdulaziz University, PO Box 80215, Jeddah 21589, Kingdom of Saudi Arabia jkari@doctors.org.uk Introduction Children with chronic kidney disease (CKD) require lifetime medical treatment, which imposes significant inconvenience and uncertainty on their lifestyle and that of their families. Renal replacement therapy (RRT) with dialysis and kidney transplantation for End-stage kidney disease (ESKD) has proven that survival is possible; however, mortality remains 30 times higher in children with advanced CKD than in those without renal disease [1]. The management of children with CKD is complex and multidisciplinary. It usually requires multiple medications (some of which are delivered subcutaneously or intravenously), medically invasive procedures, hemodialysis (HD) for four to five hours (thrice-weekly) or continuous peritoneal dialysis (PD), and nutritional supplementation via enteral tubes and pump devices [2]. Parents and guardians besides their usual parental responsibilities, adopt a health care provider role. The quality of care parents provide to their patients is an important determinant of the outcome of their children [3]. Parents assume diverse roles, including those of nurses, pharmacists, and physicians, and they deliver home-based interventions, including dialysis and nutritional supplementation, which are technically demanding and are basically provided by highly trained nurses in hospitals [4]. Because parents play a core role in the care of their children with CKD, their own health and well-being are important. Parents of children with CKD face many problems, including a lower quality of life, higher levels of anxiety, and maladaptive behaviors. This can consequently have a deleterious impact on the child s personal development and medical treatment. However, these problems can be improved by providing support for parents, which can indirectly lead to better outcomes in the children [5]. Patients with CKD usually have a poor quality of life as the disease itself and dialysis are invariably quite stressful. As a result, it constitutes a predisposing factor for the development of psychiatric disorders in these patients and their family

2 members, particularly in their main caregivers [6]. In the Kingdom of Saudi Arabia (KSA), children tend to stay for long periods on dialysis as renal transplantation is not available to most patients due to the lack of organ donors from the same family background. In this study, the authors evaluated the social consequences of RRT on children and their parents. They also explored the underlying causes of their anxiety and worries and compared between the effect of PD and HD. Material and Methods This questionnaire-based study was conducted between January and June 2012 in children who were on PD or HD. Three pediatric dialysis centers in Jeddah were included in the study, namely King Abdulaziz University Hospital (KAUH), King Faisal Specialty Hospital and Research Center, and the Kidney Center at King Fahad Hospital. Consent was obtained from the parents of the participants prior to their inclusion in the study. Permission to conduct the study was granted by the Biomedical Ethics Research Committee of King Abdulaziz University. Children were included in the study provided they had CKD and were on dialysis (PD or HD) for at least 3 mo. Children whose parents declined to participate in the study were excluded. Short structured interviews were performed with the parents of children on dialysis either during hospital visits or over the telephone. A newly-framed questionnaire containing 13 questions was filled for each patient (Table 1). The content validity of the questionnaire was tested by a team of three consultants in pediatric nephrology. Face validity was evaluated by giving the questionnaire to five parents. The reliability of the questionnaire was not calculated owing to the small sample size. The questionnaire comprised questions eliciting personal data, the effect of dialysis on the father s work, level of care provided by the mother to other family members, satisfaction with support from medical and nursing staff, availability of donors for transplantation, and acceptance of transplantation from brain dead donors. Frequent admissions were defined as four or more admissions per year. One to three admissions were considered infrequent, while less than one admission per year was considered rare. The Statistical Package for the Social Sciences (SPSS), version 18 was used for statistical analysis. Qualitative data were presented as frequencies and percentages. Fisher s exact test was used for qualitative data when the expected cell counts were less than five. Quantitative data were expressed as means and standard deviations (SD). Unpaired student t test was used for comparison between two groups. Significance was considered at p-value<0.05. Results Thirty six children and their families were recruited. An interview was done with the fathers of 21 children (58 %); in other cases, it was done with the mothers in nine children (25 %), and the caregivers (uncle or oldest sisters or brothers) in six children (17 %). Most of the patients were Saudis. Thirty-three children (92 %) lived with their parents, one child lived with his mother, and two children lived with other family members (uncle and grandmother). Boys comprised 55.6 % of the study population. The mean (SD) age of the children at the time of the study was 11.5± 6.87 y. Amongst the children, 17 were on HD, while 19 were on PD. The mean (SD) duration of dialysis was 28±11.3 mo (27.1±5.7 mo for patients on HD and 28.9±4.4 mo for patients on PD). In most cases, the parents of the children were educated; however, there was no difference in the parents level of education or monthly income between children on HD and those on PD. Only one third of the families had the opportunity to choose the modality of dialysis. If given the choice, 75 % (27 families) responded they would have preferred pre-emptive renal transplantation, 17 % (seven families) said they would have chosen PD, and only 2 % (two families) responded they would have preferred HD. Twenty-seven children (75 %) underwent dialysis for more than one year, while the remaining 25 % underwent dialysis for 3 to 12 mo. The main motivation to accept dialysis was worsening medical condition in 15 children (42 %), physician advice in 14 children (39 %), belief that RRT in the form of dialysis or transplantation was beneficial in six cases (17 %), and encouragement from friends and extended family in one case (2.7 %). Most children (80 %) received medications free of charge from the treating hospital or a charity organization, while 20 % reported that they had to purchase them. Table 2 compares the difference between the effect of PD and HD on the families and the amount of support received from the medical and nursing staff. The main cause of worry was the unavailability of kidneys for renal transplant in 26 children (72.2 %), poor growth in six children (16.7 %), dependency on others in one case (2.8 %), and loss of hope in three children (8.3 %). Most of the families (n =32; 88.9 %) were emphatic that they would accept renal transplant from clinically dead donors, while 4 (11.1 %) refused because they thought it was un- Islamic. Only 15 children (41.2 %) had potential live-related donors. The main causes of anxiety after transplantation were graft rejection (39 %), side effect of immunosuppression (44.4 %), or both (16.7 %). Both modalities of dialysis had a negative effect on fathers jobs in over 50 % of the cases (Table 2). Similarly, both modalities of treatment had a considerable impact on the quality of care provided by the mothers to other family

3 Table 1 English version of the questionnaire used in the study We are members of the medical team at the Faculty of Medicine at the King Abdulaziz University, and we are going to conduct a survey about the social and psychological impact of renal replacement therapy (hemodialysis or peritoneal dialysis) on children and adolescents and their families. Note that all your data will be handled with confidentiality. 1. Child's name: 2. Medical record number: 3. Nationality: 4. Child's gender: - Male -Female 5. Child's age (in years): 6. Age at diagnosis of the disease: 7. Who lives with the child? - Parents - Mother - Other 8. Educational level of father: - Illiterate - Read and write - Completed primary school - Completed intermediate school - Completed university 9. The educational level of mother: - Illiterate - Read and write - Completed primary school - Completed intermediate school - Completed university 10.What is the total income of the family? - Less than 2000 SR - Between SR ,000 SR - more than 10,000 SR

4 Table 1 (continued) 11. Relationship with the patient: - Father - Mother - Grandfather - Grandmother - Other (specify ) 12. Where do you get the child's treatment? - From the hospital - From another hospital for free - Purchased from a private owner - From charitable organizations. 13. Did you have the opportunity to choose the type of dialysis? -Yes -No 14. What type of dialysis is administered to the child? - Hemodialysis - Peritoneal dialysis 15. If you had the opportunity to choose, what treatment would you prefer to start with? - Frequent hemodialysis in hospital - Peritoneal dialysis at home -Kidney transplant before dialysis 16. What is the biggest motivation to start treatment? - Advice of the physician - Encouragement from parents and relatives - A personal conviction that the dialysis or transplantation is the most appropriate treatment - The deterioration of the health status of children 17. When did the child start dialysis? - 3 months ago - 3 to 6 months ago - 6 months ago - over a year ago 18. Did the medical team explain to you how dialysis will be undertaken, its complications, and the reasons why it was prescribed? -Yes -No 19. How often is your child hospitalized per year? - Every 3 months - Every 3 to 6 months - Every 6 months - Once a year

5 Table 1 (continued) 20. To what extent does the child's disease affect his/her father's work? - Significantly - Somewhat - No impact 20. To what extent does the child's disease affect his/her mother? - Significantly - Somewhat - No impact 21. What raises your anxiety levels towards the child? - Lack of transplantation - Lack of physical growth of the child - Permanent adoption on others - The futility of treatment and loss of hope 22. How was the support and assistance provided by medical staff, including doctors and nurses during the treatment period? - Excellent - Very good - Good - Poor 23. Do you have a donor in the family in case the child needs transplantation of the kidneys? - Yes - No 24. Do you object to kidney transplantation from a clinically deceased person? - Yes - No (why ) 25. Is the quality of your child's life better after transplantation? - Yes - No - Transplantation not done yet 26. What raises your anxiety after transplantation? - Rejection of transplantation - Lack of treatment - Adverse effects of drugs - All of the above

6 members. However, there was no difference between the two modalities on the frequency of admissions or the effect on fathers jobs or the quality of care provided by mothers to other family members. The children and family members of both groups felt that they had enough explanation and support from the medical and nursing staff. Discussion Several instruments have been used to assess the effects of disease and the beneficial effects of medical treatment in patients with chronic diseases. Among these, the Pediatric Quality of Life Inventory [7] is commonly used in children with CKD and the PedsQL 3.0 ESKD Module, which was recently developed by Goldstein et al., requires additional validation tests [8]. Although Park et al. showed that the Korean version of the PedsQL 3.0 ESKD Module was a feasible, reliable, and valid instrument to assess specific health-related quality of life in children with ESKD [9], an Arabic version is yet to be developed and validated. Thus, owing to the absence of an ESKD-specific instrument to access health-related quality of life in children and their Table 2 Social impact of hemodialysis and peritoneal dialysis on children and their families and amount of support received a HD PD P value N =17 (%) N =19 (%) Admissions/year Frequent 4 (22.2) 2 (11.2) 0.27 Infrequent 10 (55.8) 9 (50) 0.72 Rare 3 (17.6) 8 (44.4) 0.21 Enough explanation received Yes 14 (82.3) 18 (95) 0.32 No 3 (17.7) 1 (5) 0.32 Effect on father s job Significant 9 (52.9) 10 (52.6) 0.75 Somewhat 5 (29.4) 8 (42.1) 0.68 No effect 3 (17.7) 1 (5.3) 0.25 Effect on mother s care to the rest of the family Significant 9 (52.9) 9 (47.4) 0.74 Somewhat 5 (29.4) 8 (42.1) 0.68 No effect 3 (17.7) 2 (10.5) 0.42 Support from the medical and nursing staff Excellent 16 (94.1) 16 (84.2) 0.34 Good 1 (6.9) 3 (15.8) 0.61 Poor 0 (0) 0 (0) HD Hemodialysis; PD Peritoneal dialysis a Data are presented as frequency (percent) parents, the authors developed a questionnaire to assess the social consequences of RRT on children and their families. In the index study, unavailability of kidneys for renal transplant, poor growth, dependency, and loss of hope were factored as the main problems faced by the patients. Furthermore, the results demonstrated that dialysis had a negative effect on fathers jobs as well as the quality of care provided by mothers to other family members. Similar findings were reported by Cimete, who found that in addition to growth and development problems faced by their children, some parents reported financial and bureaucratic problems and neglect of other family members [10]. In another study, although improved psychological functioning of the family was reported in the parents of children with kidney disease, many parents reported significant psychological distress, which was complicated in many cases by unemployment related to the care of the child [11]. Other difficulties such as transport and relocation difficulties over extended periods of time have been cited by parents of pediatric renal transplant recipients [12]. Findings from one randomized controlled trial in adults reveal that there is no difference in the health-related quality of life in adults undergoing PD compared with those on HD [13]. However, there is no evidence on the impact of different types of dialysis on health-related quality of life in pediatric patients. In the present study, the authors did not find a significant difference in the number of admissions per year between children on PD and those on HD. Because dialysis is a long-term intervention that will affect not only the patient s daily life, but also those of his family, the National Institute for Health and Clinical Excellence (NICE) recommends that healthcare professionals, when providing information about treatment options in patients with CKD, should discuss and consider any information that the patients or their families have obtained from other sources and how this information has influenced their decision [14]. Recently, a study on adult patients showed that there is an increase in selfefficacy and self-care in the pre-dialysis education group compared with the control group [15]. However, there is currently no strong evidence on the experience of children and their parents and families regarding choosing the modality of dialysis. Although most patients and their families in the current study reported that they had received enough explanation about treatment, only one third of the families had the opportunity to choose the modality of dialysis. Over half of the families (77 %) responded that, if given the choice, they would prefer pre-emptive renal transplantation; 17 % of the families would choose PD, and only 2 % would prefer HD. There is a need for patients as well as their caregivers to have adequate support [16]. Strong evidence from one systematic review demonstrated that self-accusation and blame, depression and generalized anxiety, emotional turmoil, uncertainty around diagnosis, the child s future and prognosis, and submitting the child to clinical staff were issues at pre-dialysis

7 and dialysis for parents of children with CKD [17]. It has been reported that social supports (emotional, informational, instrumental, and appraisal) are useful in helping the families of children on PD to strengthen their coping mechanisms [18]. Such support is unfortunately not available in most developing countries, such as KSA. Furthermore, children stay on dialysis for long periods in KSA because of limited availability of kidneys from deceased donors. Of the 505 renal transplants performed in KSA in 2012, 156 were cadaveric and only 21 were transplanted to children ages 15 y or younger [19]. As a result, the main cause of worry in the index patients was difficulty in getting kidneys for transplant. In KSA, renal transplantation from clinically dead donors is a procedure that has been performed for over two decades [20]; however, in 11 % of the cases, this procedure was rejected, thus reflecting the ignorance of the patients and their caregivers of the Islamic perspective of organ transplantation. This study was limited in that the size of the study population was small. Although the present findings cannot be generalized beyond the study sample, they provide insight into the perspective of a group of families regarding the effect of dialysis on their lives as well as those of their children. Conclusions Both modalities of dialysis have a negative impact on the lives of patients and those of their families. Since most patients undergo dialysis for long periods, it is imperative to provide optimum support for the patients and their family members to help them cope with the treatment. Acknowledgments The authors acknowledge with thanks Deanship of Scientific Research for their technical and financial support. The authors also thank the Clinical Research Unit at King Abdulaziz University Hospital for their assistance with the statistics and writing up of this paper. Conflict of Interest None. Role of Funding Source This project was funded by the Deanship of Scientific Research (DSR), King Abdulaziz University, Jeddah under the grand number (432/003/d) for pediatric nephrology research. References 1. McDonald SP, Craig JC; Australian and New Zealand Paediatric Nephrology Association. Long-term survival of children with endstage renal disease. N Engl J Med. 2004;350: Groothoff JW, Gruppen MP, Offringa M, Hutten J, Lilien MR, Van De Kar NJ, et al. Mortality and causes of death of end-stage renal disease in children: A Dutch cohort study. Kidney Int. 2002;61: Reiss J. Managing chronic diseases: Care of children with chronic illness teaches some lessons. BMJ. 2005;330: discussion Gerson AC, Furth SL, Neu AM, Fivush BA. Assessing associations between medication adherence and potentially modifiable psychosocial variables in pediatric kidney transplant recipients and their families. Pediatr Transplant. 2004;8: Manificat S, Dazord A, Cochat P, Morin D, Plainguet F, Debray D. Quality of life of children and adolescents after kidney or liver transplantation: Child, parents and caregiver s point of view. Pediatr Transplant. 2003;7: Eiser C. Psychological effects of chronic disease. J Child Psychol Psychiatry. 1990;31: Varni JW, Limbers CA. The pediatric quality of life inventory: Measuring pediatric health-related quality of life from the perspective of children and their parents. Pediatr Clin North Am. 2009;56: Goldstein SL, Graham N, Warady BA, Seikaly M, McDonald R, Burwinkle TM, et al. Measuring health-related quality of life in children with ESRD: Performance of the generic and ESRDspecific instrument of the Pediatric Quality of Life Inventory (PedsQL). Am J Kidney Dis. 2008;51: Park KS, Cho MH, Ha IS, Kang HG, Cheong HI, Park YS, et al. Validity and reliability of the Korean version of the pediatric quality of life ESRD module. Health Qual Life Outcomes. 2012;10: Cimete G. Stress factors and coping strategies of parents with children treated by hemodialysis: A qualitative study. J Pediatr Nurs. 2002;17: Kärrfelt HM, Berg UB, Lindblad FI. Renal transplantation in children: Psychological and donation-related aspects from the parental perspective. Pediatr Transplant. 2000;4: Baines LS, Beattie TJ, Murphy AV, Jindal RM. Relationship between donors and pediatric recipients of kidney transplants: A psychosocial study. Transplant Proc. 2001;33: Korevaar JC, Feith GW, Dekker FW, van Manen JG, Boeschoten EW, Bossuyt PM, et al. Effect of starting with hemodialysis compared with peritoneal dialysis in patients new on dialysis treatment: A randomized controlled trial. Kidney Int. 2003;64: Peritoneal dialysis in the treatment of stage 5 chronic kidney disease. National Institute for Healthy and Clinical Excellence. nice.org.uk/guidance/cg125. Accessed December 11, Mason J, Khunti K, Stone M, Farooqi A, Carr S. Educational interventions in kidney disease care: A systematic review of randomized trials. Am J Kidney Dis. 2008;51: Friedman AL. The broader burden of end-stage renal disease on children and their families. Kidney Int. 2006;70: 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: 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: SCOT Data (Saudi Center of Organ Transplantation). Organ transplantation in Saudi Arabia. Saudi J Kidney Dis Transpl. 2010;21: Albar M. Organ transplantation: A Sunni Islamic perspective. Saudi J Kidney Dis Transpl. 2012;23: