ABSTRACT
Infection with Burkholderia cepacia complex in patients with cystic fibrosis (CF) results in highly variable clinical outcomes. The purpose of this study was to determine if there are genomovar-specific disparities in transmission and disease severity. B. cepacia complex was recovered from 62 patients with CF on > or =1 occasions (genomovar III, 46 patients; genomovar II [B. multivorans], 19 patients; genomovar IV [B. stabilis], 1 patient; genomovar V [B. vietnamiensis], 1 patient; and an unclassified B. cepacia complex strain, 1 patient). Patient-to-patient spread was observed with B. cepacia genomovar III, but not with B. multivorans. Genomovar III strains replaced B. multivorans in 6 patients. Genomovar III strains were also associated with a poor clinical course and high mortality. Infection control practices should be designed with knowledge about B. cepacia complex genomovar status; patients infected with transmissible genomovar III strains should not be cohorted with patients infected with B. multivorans and other B. cepacia genomovars.
Subject(s)
Burkholderia Infections/microbiology , Burkholderia cepacia/genetics , Burkholderia/genetics , Cystic Fibrosis/microbiology , Adolescent , Adult , British Columbia/epidemiology , Burkholderia/classification , Burkholderia/isolation & purification , Burkholderia/pathogenicity , Burkholderia Infections/epidemiology , Burkholderia Infections/mortality , Burkholderia Infections/transmission , Burkholderia cepacia/classification , Burkholderia cepacia/isolation & purification , Burkholderia cepacia/pathogenicity , Child , Cystic Fibrosis/complications , Humans , Prevalence , VirulenceABSTRACT
The qualitative study explored the day-to-day experiences of parents caring at home for a child with a progressive life-threatening illness at a certain point in their illness trajectory. This point in the trajectory is when the child lives with a complex chronic condition, and is in need of specialized and time-consuming care, but is not yet in a terminal phase. The naturalistic research design of phenomenology was chosen for the study's methodology. Parents' experiences of caring for their child were conceptualized as an ongoing process of 'facing adversity', as parents had continuously to redefine and then manage those changes resulting from the progressive nature of their child's condition. Concepts of normalization and chronic sorrow are considered in the conceptualization, as are the challenges of caregiving (particularly of mothers) who faced many hardships in their role, including the myriad of changes related to the increased burden of care. Implications for nursing practice are identified.
