The quality of information received by parents of children with chronic ill health attending hospitals as indicated by measures of illness uncertainty

Background: The effectiveness of communication can be defined in terms of one of its outcomes: the uncertainty that it eliminates. Clear unambiguous communication is important for the parents of children to help them understand problems, explore alternative solutions and help make decisions. Persistent uncertainty is known to produce anxiety, unpredictable responses, emotional distress and poor quality of life. The uncertainty experienced by parents is one indicator of quality in the healthcare system which could have diagnostic and predictive value. Aim: To assess the uncertainty experienced by parents of children with chronic conditions in the United Arab Emirates (UAE). Design: An exploratory descriptive, cross-sectional design was chosen across different sites in the UAE. Methods: Data were collected from parents accompanying children receiving treatment either as an inpatient or outpatient, using the previously validated, culturally adapted ‘Parent Perception of Uncertainty Scale’ (PPUS). Results: Most study participants experienced moderate or high levels of uncertainty. Parents who did not speak the local language, whose child was less than 1 year old or who was acutely ill had significantly more uncertainty than others, as did those parents whose child was approaching adolescence and puberty. Conclusions: As only 5% of all participants reported low levels of uncertainty this should be of major concern as both an indicator of the quality of communication between health professionals and parents, and of the adverse health effects and poor quality of life experienced by parents of patients with chronic illness.