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Parental discussion of G6PD deficiency and child health: implications for clinical practice
  1. Yue Guan1,
  2. Debra L Roter1,
  3. Aichu Huang2,
  4. Lori A H Erby1,
  5. Yin-Hsiu Chien2,
  6. Wuh-Liang Hwu2
  1. 1Department of Health, Behavior and Society, Johns Hopkins Center for Genomic Literacy and Communication, Johns Hopkins Bloomberg School of Public Health, Baltimore, USA
  2. 2Department of Medical Genetics, National Taiwan University Hospital, Taipei, Taiwan
  1. Correspondence to Yue Guan, Department of Health, Behavior and Society, Johns Hopkins Center for Genomic Literacy and Communication, Johns Hopkins Bloomberg School of Public Health, 624 N. Broadway, Baltimore, USA; yguan{at}jhsph.edu

Abstract

Objective Parents are encouraged to discuss self-care with children affected by G6PD deficiency; however, little is known about the extent or impact of these discussions on the physical and psychosocial health of these children. The purpose of this study was to examine the nature of parental–child discussions of G6PD deficiency self-care and their relationship to child health.

Methods A quantitative cross-sectional survey of 178 Taiwanese parents of children with G6PD deficiency was conducted. The extent of parental–child self-care discussions was assessed in regards to coverage of nine key topics. Parent's G6PD deficiency status, knowledge of haemolytic anaemia symptoms and reported G6PD deficiency education from providers were examined as correlates of parental discussion. Child health was assessed with the child health questionnaire-parent form (Chinese version) and a 13-item haemolytic anaemia symptom list.

Results Self-care discussions were positively correlated with parental G6PD deficiency status (β=2.08, p=0.03), accurate identification of haemolytic anaemia symptoms (β=0.18, p=0.01), the thoroughness and clarity of patient education (β=0.14, p<0.001) and child age (β=1.04, p<0.001). Among children reported to have experienced significant symptoms of acute haemolytic anaemia (35%), the extent of self-care discussions was positively associated with reported physical and psychosocial child health (β=1.18, p<0.001).

Conclusions Parental–child G6PD deficiency self-care discussions are associated with better child health, and parental involvement in these discussions is facilitated by the thoroughness and clarity of patient education received from providers.

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