Primary caregiver experiences and perspectives on caring for a child with chronic kidney disease within a South African context

Abstract

Background: Informal and unpaid caregivers play an important role in the management of paediatric patients who have chronic kidney disease (CKD). The burdens that the caregivers experience during their caregiving roles and responsibilities have not been extensively researched, particularly within this patient population. The high physical, psychosocial and economic burdens experienced by the caregiver can in turn lead to negative impact on the child’s health outcomes and medical treatment. This study ascertained the burdens that caregivers experienced, in their care of paediatric CKD patients, who were receiving haemodialysis, in the renal unit of a large public hospital in KwaZulu Natal, South Africa. Methods of communication and types of information provided by the renal healthcare team and the support needs of caregivers to reduce burden, anxiety and social dysfunction was elicited. Methods: Two standardized instruments, namely, the General Health Questionnaire - 12 and the Paediatric Renal-Care Burden Scale were used to ascertain burden, anxiety, and social dysfunction experienced among caregivers of CKD paediatric patients on haemodialysis. Two semi-structured questionnaires were administered. In the first instance, caregivers were asked to provide information on areas that could assist them to alleviate the burden of caregiving and the second questionnaire was used to ascertain from renal staff, the methods they used to communicate with, and the information they provided to caregivers. Results: Twenty-one caregivers participated in the study, with females providing most of the caregiving duties (76.2%). Using the PR-CBS, financial burden emerged as the highest burden experienced (mean = 4,86 and SD = 0,77). The use of the GHQ – 12, revealed that anxiety and distress were significantly high in caregivers (mean = 0.95 and 0.85) respectively. Overall, 18 caregivers had moderate to high burden. The total mean burden score for the PR-CBS for females was significantly higher than that for males (11.30; SD = 6.11 vs 7.83; SD = 4.70). This is confirmed by the total mean burden score declared by females for GHQ – 12, which was also significantly higher than that declared by males (6.58; SD = 2.83 vs 3.75; SD = 1.80). There was significant positive correlation between GHQ-12 anxiety score (p= 0.003) and PR-CBS burden score (p = 0.005). Conclusion: The prevalence of burdens, anxiety and social dysfunction was significantly high among caregivers of CKD paediatric patients and is often overlooked by the renal Background: Informal and unpaid caregivers play an important role in the management of paediatric patients who have chronic kidney disease (CKD). The burdens that the caregivers experience during their caregiving roles and responsibilities have not been extensively researched, particularly within this patient population. The high physical, psychosocial and economic burdens experienced by the caregiver can in turn lead to negative impact on the child’s health outcomes and medical treatment. This study ascertained the burdens that caregivers experienced, in their care of paediatric CKD patients, who were receiving haemodialysis, in the renal unit of a large public hospital in KwaZulu Natal, South Africa. Methods of communication and types of information provided by the renal healthcare team and the support needs of caregivers to reduce burden, anxiety and social dysfunction was elicited. Methods: Two standardized instruments, namely, the General Health Questionnaire - 12 and the Paediatric Renal-Care Burden Scale were used to ascertain burden, anxiety, and social dysfunction experienced among caregivers of CKD paediatric patients on haemodialysis. Two semi-structured questionnaires were administered. In the first instance, caregivers were asked to provide information on areas that could assist them to alleviate the burden of caregiving and the second questionnaire was used to ascertain from renal staff, the methods they used to communicate with, and the information they provided to caregivers. Results: Twenty-one caregivers participated in the study, with females providing most of the caregiving duties (76.2%). Using the PR-CBS, financial burden emerged as the highest burden experienced (mean = 4,86 and SD = 0,77). The use of the GHQ – 12, revealed that anxiety and distress were significantly high in caregivers (mean = 0.95 and 0.85) respectively. Overall, 18 caregivers had moderate to high burden. The total mean burden score for the PR-CBS for females was significantly higher than that for males (11.30; SD = 6.11 vs 7.83; SD = 4.70). This is confirmed by the total mean burden score declared by females for GHQ – 12, which was also significantly higher than that declared by males (6.58; SD = 2.83 vs 3.75; SD = 1.80). There was significant positive correlation between GHQ-12 anxiety score (p= 0.003) and PR-CBS burden score (p = 0.005). Conclusion: The prevalence of burdens, anxiety and social dysfunction was significantly high among caregivers of CKD paediatric patients and is often overlooked by the renal healthcare team. The experiences of this unique population of caregivers are complex and multifaceted, but despite the various challenges they encounter, they continue to provide care and support for their young patients. Renal healthcare practitioners may use the findings to develop and provide suitable supportive interventions and resources for these caregivers. It is essential that these be included in treatment guidelines for the ill child, not only to reduce caregiver burdens but also to improve the overall CKD paediatric patient outcomes.