Psychosocial aspects of children and families of children treated with automated peritoneal dialysis

Abstract

BackgroundThe aim of this study was to analyze psychosocial aspects of chronic kidney disease (CKD) in children treated with automated peritoneal dialysis (APD).MethodsThe study assessed 41 children > 2 (range 2.1–18) years of age and their parents. Data concerning the illness and sociodemographic parameters were collected. Patients completed the Paediatric Quality of Life Inventory (PedsQL) and their parents the PedsQL-proxy version, General Health Questionnaire (GHQ-12), Berlin Social Support Scales (BSSS), and Caregiver’s Burden Scale (CBS).ResultsParents rated their children’s overall health-related quality of life (QoL) as well as their physical and emotional functioning lower than the patients themselves. The majority of primary caregivers had a medium level of the total burden index in the CBS and higher values in the scales need for support and perceived available support than in the received support (BSSS). In the GHQ-12, 51.2 % of primary caregivers had scores >2 points, which indicated the possible occurrence of abnormal mental functioning.ConclusionsFinancial support for patients’ families is necessary. Parents who provide primary care to children on PD require, above all, emotional support and assistance in self-fulfilment. More than half of them may have impaired mental function. There is the strong need to provide continuous psychological care for caregivers. Differences in perception of the children’s activity in varied areas by the patients themselves and their caregivers may contribute to further problems within families.

Psychosocial aspects of children and families treated with hemodialysis

“…13 All tests were translated and validated in Poland. 17 All tests were designed according to the general protocol and administration guidelines. Cronbach's a is 0.88 for the total scale of CBS and ranges from 0.74 to 0.82 for the subscales.…”

“…The tests used in the study were thoroughly presented in our other work. 17 All tests were designed according to the general protocol and administration guidelines. Spearman's correlation analysis was used to determine the correlation between parameters.…”

Caregiver Experience in Pediatric Dialysis

“…This process began with a review of the published literature on caregiver experience in CKD followed by the writing of an initial script that included previously described themes as well as de novo domains based on the clinical experience of the investigators related to adaptation, resilience, and financial burdens. [12][13][14]16,[18][19][20][21][22][23][24]26 Second, 3 national experts in pediatric dialysis and 2 national experts in qualitative research methods reviewed the initial script for content and its ability to identify caregiver experience. Finally, the script was piloted with 4 caregivers of pediatric patients on dialysis in Madison, Wisconsin.…”

“…12,13 In their results, authors of previous studies largely report on the negative experiences of caring for a child with chronic kidney disease (CKD), finding that parents of children on dialysis may have higher levels of anxiety affected by large family size, 14,15 higher rates of depression, 16 poorer health-related quality of life, 17 less time for healthy siblings, 18,19 greater marital strain, 14,[20][21][22] and higher levels of financial stress. 18,19,21,[23][24][25] Although informative, these studies have important limitations, such as small sample size (as few as 2-4 patients total 14,18,19 ); conflicting results (eg, some studies do not reveal higher levels of parental anxiety, 24 mental illness, 15,18,23 or divorce 21 ); reliance on earlier generations of dialysis technology, medical treatments, and nutrition 15,18,20,23,26,27 ; and being conducted in settings with universal health care systems [15][16][17][21][22][23][24][25][26] that may not translate to the American health care system.…”

Update on Ethical Issues in Pediatric Dialysis: Has Pediatric Dialysis Become Morally Obligatory?

“…Prior research has demonstrated that having a child on pediatric dialysis negatively affects family's finances, a burden that will be experienced by the family as a whole (29,30,33). These expenses reinforce the importance of continued advocacy by the nephrology community for the provision of resources to our patients and their families, but also raise questions over how much expense is reasonable for a family to take on.…”