Because most patients with CKD especially children need comprehensive support and care, their caregivers feel more physical, psychological, and financial stress. Unfortunately, few studies have been conducted to measure the QoL of caregivers of children with CKD .
Our results showed that work disruption occurred in only 8% of caregivers, as the primary caregiver is usually the mother and 94% of mothers in our study were housewives. Also, only 14% of caregivers sought an additional job, which can be attributed to unavailability of jobs, especially part-time jobs. Furthermore, most caregivers in our study were illiterate and of lower educational levels, which make their chances of finding jobs low. Two previous studies show that caregivers of children with ESRD were unemployed and financially supported by another member of the family [24, 25].
In our study, more than one third of caregivers reported need to travel to another governorate to receive medical care for their children and some of them were obliged to pay for long time accommodation. In most cases, travel was primarily for kidney biopsy, consulting another nephrologist or for renal transplantation. This was in agreement with caregivers of children with cancer who reported need for extra payment for travel, lodging, and meals away from home as reported by Miedema et al. .
Regarding the method of payment, a small percentage (6.8%) of caregivers were completely covered by health insurance and only 3.2% of children were treated on government expense by a ministerial decree while about three quarters (76%) shared paying treatment through both health insurance and out-of-pocket. The remaining 14% had to pay for treatment out-of-pocket. This is because health insurance covers the cost of some drugs and investigations; the family must cover the rest of medical treatment from out-of-pocket. The total FIM and parental HRQoL scores were more severely impaired than family functioning.
Lower scores in most of the scales in this study reflect the inability of caregivers to deal with the different stressors due to caring for their diseased children and also the limited facilities and services available for diseased children and their caregivers. In addition, this may relate directly to the fact that most of the burden is falling on mothers (50.4%).
The total PedsQL™ FIM and parental HRQoL of caregivers of children with CKD was lower in our population compared with other studies of caregivers of children with other chronic diseases (asthma , osteogenesis imperfecta , sickle cell disease , asthma and heart diseases , chronic gastrointestinal disorders , chronic pain , nephrotic syndrome , disabilities , and different chronic conditions ).
Notably, the lowest score in our study was the worry function. This may be due to the nature of CKD and its anticipated progression to ESRD and related premature mortality, in addition to worry about the efficacy, side effects of treatment, and comorbidities associated with CKD. This was consistent with results of studies in caregivers of children with nephrotic syndrome, one of the major causes of CKD in our children, who also reported the lowest score in worry function [28, 30].
On the other hand, the highest score in our study was in the family relationships (74.5 ± 30.6). This may be due to the way the Egyptians react in coping with chronic disease, especially in children, as family cooperation and cohesion is a common feature in facing difficulties. However, it was not possible to establish whether these positive family relationships were found before the diagnosis of CKD or not.
Compared to fathers and brothers, mothers and sisters of children with CKD reported significantly lower scores in total FIM, parental HRQoL, and family summary scores. This is because mothers usually carry a disproportionate number of parenting demands (such as monitoring the child’s compliance to treatment, follow-up visits, hospitalization, diet, and fluid requirements) and lifestyle disruptions (such as absence from work or quitting job). In addition, mothers are responsible for the daily care of other family members along with their ill child’s health and functioning. Our findings were similar to those reported in other populations where mothers of children with chronic pain, cancer, and disabilities reported significantly worse total FIM, parent HRQoL, and family summary scores than fathers [7, 29, 31]. Our findings are also supported by another research using the Ulm Quality of Life Inventory for parents, in which mothers of CKD children achieved significantly lower total, physical, emotional, and daily functioning than fathers .
There were statistically significant differences in the PedsQL™ FIM scores in all domains of QoL by the degree of financial hardship where caregivers who suffer from great financial hardship due to their children CKD acquired the least score in all domains of FIM. As a result of poverty and working mainly in low-paying jobs (67.6% of fathers work in simple and non-technical professions while 94% of mothers were not working for cash), caregivers of children with CKD in our study tend to achieve lower QoL scores with increase in financial hardship.
Regarding treatment modality, our study revealed that there were statistically significant differences between conservative and dialysis groups in all domains of PedsQL™ FIM, except for communication and worry domains. In all domains, caregivers of children who received conservative treatment achieved higher scores than caregivers of children on hemodialysis. This can be explained by the burden of hemodialysis sessions (three times weekly and each session lasts about 3–4 h), transportation from remote areas, restriction of activities, work disruption, cost of dialysis and other medications plus psychological upset and worry about complications of the invasive dialysis-related procedures. A study in Germany using the Ulm Quality of Life Inventory for Parents (ULQIE) showed that parents of children undergoing dialysis also reported the lowest scores on all scales, whereas parents of children undergoing conservative treatment reached the higher HRQoL scores .
Though not reaching the level of significance, caregivers of children with CKD duration > 5 years reported higher scores in parental HRQoL family summary than those of children with CKD duration ≤ 5 years. This phenomenon is called “response shift” which means that with passage of time caregivers learned how to cope with and adjust to their child illness and thus report better QoL . In contrast to our results, a study of family impact of children with ESRD revealed higher scores of the PedsQL™ FIM with short duration (< 5 years) than longer duration (≥ 5 years) . This result suggests that a longer duration of ESRD can impose additional burden on parents or caregivers especially when their children reach end-stage of the disease.
Similarly, there were statistically significant differences in the total PedsQL™ FIM and parent HRQoL scores by social class where caregivers from the higher socioeconomic level reported higher scores in all domains than those in the middle and low socioeconomic level. Thus, with improvement in socioeconomic conditions, caregivers tend to adjust better to their children CKD and so achieve higher QoL scores.
Strengths and limitation of the study
To our knowledge, this study is the first to use PedsQL™ Family Impact Module to study the family impact of CKD in children in all stages of CKD not only ESRD . However, this study has some limitations: caregivers were recruited in the study during a routine follow-up visit or after hemodialysis sessions and therefore the reported scores are not in direct response to disease exacerbation. Research will be required to assess the short-term impact of such events on caregivers. Another limitation is the absence of a control group due to cross sectional nature of the study. However, the QoL scores of parents of children with CKD were lower than caregivers of healthy children.