Why Do Some Parents Refuse Consent for Lumbar Puncture on Their Child? A Qualitative Study

Abstract

Objective: Qualitative analysis of the attitudes, beliefs, and perceptions of parents who refuse consent for lumbar puncture (LP) on their child. Methods: We performed prospective, semistructured, face-to-face interviews with 24 families declining consent for LP in their child (aged between 1 month and 10 years of age), in 2 hospitals, over a 1-year period in the United Arab Emirates. The questionnaire included open-ended questions to allow parents to discuss their beliefs, concerns, and expectations. Content analysis of the transcripts was performed on how parents experienced the issue: their behavior, perceptions, and beliefs, as well as their opinions on what might have made them consent. Identified themes resulting from that analysis were labeled and coded before reducing them into categories and generating a Pareto chart. Results: Seven (29%) families were unfamiliar with LP indications and 3 had the impression that LP was also therapeutic. The emerged themes were fear of complications by 18 (75%), perception that LP was unnecessary by 5 (21%), and distrust of the motives behind the request for consent. Fear of paralysis and conviction that LP is unnecessary encompassed 80% of the causes for refusal. Eleven families (46%) stated that nothing would have made them consent, and 10 (42%) would agree only if the child looked unwell or deteriorated. Conclusions A better understanding of parents’ perceptions, beliefs, and fears will help develop appropriate solutions to their refusal of LP consent.