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Parental experiences and preferences as participants in pediatric research conducted in the emergency department

  • Antonia S. Stang (a1) (a2) (a3), Stephen B. Freedman (a1) (a3) (a4), Angelo Mikrogianakis (a1) (a3), Graham C. Thompson (a1) (a3), Janie Williamson (a1) and David W. Johnson (a1) (a5) (a3)...

Abstract

Objective

To determine parental experiences and preferences regarding the conduct of pediatric research in an emergency department (ED) setting.

Methods

We conducted a cross-sectional study of parents of children ages 0 – 14 years who visited the ED of a tertiary care children’s hospital. Parents completed a Web-based survey designed to assess perceptions regarding: 1) background/training of research personnel, 2) location and timing of research discussions, and 3) factors influencing their consent/refusal decision.

Results

Parents totalling 339 were approached, and 227 (67%) surveys were completed. Overall, 87% (197/227; 95% confidence interval [CI] 83, 92) reported they would be comfortable being approached by a university student to discuss research. This proportion did not change when stratified by the child’s gender, illness severity, or season of visit. Whereas only 37% (84/227; 95% CI 31, 43) of respondents would be comfortable being approached in the waiting room, 68% (154/227; 95% CI 62, 75) would be comfortable if approached in a separate area of the main waiting room. The majority reported comfort with follow-up via email (83%; 188/227; 95% CI 78, 88) or telephone (80%; 182/227; 95% CI 75, 85); only 51% (116/227; 95% CI 44, 57) would be comfortable with a scheduled follow-up visit in the hospital. Participants identified potential complications or side effects as the most common reason for declining consent (69%; 157/227; 95% CI 63, 75).

Conclusions

The majority of parents are comfortable being approached by trained university students, preferably in a separate area of an ED waiting room, and email and telephone follow-ups are preferred over a scheduled re-visit.

Objectif

L’étude visait à déterminer l’expérience et les préférences des parents en ce qui concerne les recherches menées en pédiatrie, au service des urgences (SU).

Méthode

Il s’agit d’une étude transversale, menée chez des parents d’enfants âgés de 0 à 14 ans, qui ont consulté un médecin au SU d’un hôpital de soins tertiaires pour enfants. Les parents ont rempli un questionnaire d’enquête en ligne, visant à évaluer leurs perceptions quant : 1) aux antécédents et à la formation du personnel de recherche; 2) au lieu et au moment de l’entretien sur la recherche; 3) aux facteurs qui ont incité les parents à accepter ou à refuser la demande de participation.

Résultats

On a demandé à 339 parents de participer à l’étude, et 227 d’entre eux (67 %) ont rempli le questionnaire en ligne. Dans l’ensemble, 87 % des parents (197/227; IC à 95 % : 83–92) ont indiqué qu’ils se sentiraient à l’aise s’ils étaient abordés par un étudiant qui leur expliquerait la recherche, et cette proportion restait stable, que le facteur de stratification fût le sexe de l’enfant, la gravité de la maladie ou la saison. Tandis que 37 % seulement des répondants (84/227; IC à 95 % : 31–43) se sont dits à l’aise devant le fait d’être abordés dans la salle d’attente, 68 % (154/227; IC à 95 % : 62–75) ont indiqué qu’ils se sentiraient à l’aise s’ils étaient abordés dans un lieu isolé de la salle d’attente principale. La majorité des participants se sont déclarés à l’aise avec le suivi par courriel (83 %; 188/227; IC à 95 % : 78–88) ou par téléphone (80 %; 182/227; IC à 95 % : 75–85), tandis que 51 % (116/227; IC à 95 % : 44–57) seulement se sont dits à l’aise avec le suivi par rendez-vous à l’hôpital. Les principaux motifs de refus invoqués par les participants étaient les complications possibles ou les effets indésirables (69 %; 157/227; IC à 95 % : 63–75).

Conclusions

La majorité des parents se sont déclarés à l’aise devant le fait d’être abordés par des étudiants formés, préfèrent les entretiens dans un lieu isolé de la salle d’attente au service des urgences, et aiment mieux le suivi par courriel ou par téléphone que par rendez-vous à l’hôpital.

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Copyright

Corresponding author

*Correspondence to: Dr. Antonia S. Stang, Alberta Children’s Hospital, 2888 Shaganappi Trail NW, Calgary, AB T3B 6A8; Email: antonia.stang@albertahealthservices.ca

References

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