Mothers’ coping in chronic childhood illness: the effect of presymptomatic diagnosis of vesicoureteric reflux

UNLABELLED: AIMS OF THE STUDY WERE TO: Assess coping strategies of mothers who have a child with vesicoureteric reflex (VUR), determine mothers' understanding of VUR before and after diagnosis, assess mothers' perceived needs for support when coping with their child's VUR and compare the above aims between two groups of mothers of children with VUR. BACKGROUND: Vesicoureteric reflex (VUR) is a chronic, congenital, asymptomatic condition which when combined with urinary tract infection (UTI) can result in reflux nephropathy (RN), contributing to 20% of kidney transplants. Unfortunately, VUR is not usually diagnosed until after proven UTI, by which time RN has often developed. However, recent research, the familial ureteric reflux study (FURS) identified for the first time VUR in a cohort of new-borns investigated because of family history. Early detection and prompt treatment of UTI in the presence of VUR may significantly reduce the development of RN but this requires extreme vigilance by mothers, who are usually the primary carers. DESIGN: As mothers' experiences and perceptions were the focus, a qualitative design using semistructured, in-depth interviews was used. After obtaining ethical approval, mothers of 15 children with VUR diagnosed presymptomatically (i.e. after participation in the FUR study) and mothers of 14 children with VUR diagnosed post symptomatically were selected using a theoretical sampling matrix. All mothers gave informed consent and interviews were taped, transcribed and analysed using the 'Framework' technique. FINDINGS: Findings for both groups fall into three discrete phases: the prediagnostic, diagnostic and postdiagnostic. Analysis showed that mothers in the post symptomatic diagnosis group experienced most problems in coping, particularly because of difficulty in engaging medical intervention in the prediagnostic phase. Generally, mothers in the presymptomatic group coped well apart from those who themselves had VUR and/or RN who expressed guilt about their child inheriting the condition and consequently difficulty in coping. CONCLUSION: Early diagnosis of VUR improved mothers' coping. However, both groups identified a major need for improved information provision and support to assist coping with the sustained uncertainty of the condition.