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Acceptability of a parental early warning tool for parents of infants with complex congenital heart disease: a qualitative feasibility study
  1. Kerry Louise Gaskin1,
  2. Jo Wray2,
  3. David J Barron3
  1. 1Nursing and Midwifery Department, Institute of Health and Society, University of Worcester, Worcester, UK
  2. 2Centre for Nursing and Allied Health, Great Ormond Street Hospital NHS Foundation Trust, London, UK
  3. 3Cardiac Surgery Department, Birmingham Children’s Hospital NHS Foundation Trust, Birmingham, UK
  1. Correspondence to Dr Kerry Louise Gaskin, Nursing and Midwifery Department, Institute of Health and Society, University of Worcester, Worcester WR26AJ, UK; k.gaskin{at}worc.ac.uk

Abstract

Aim To explore the acceptability and feasibility of a parental early warning tool, called the Congenital Heart Assessment Tool (CHAT), for parents going home with their infant between first and second stage of surgery for complex congenital heart disease.

Background Home monitoring programmes were developed to aid early recognition of deterioration in fragile infants between first and second surgical stage. However, this necessitates good discharge preparation to enable parents to develop appropriate knowledge and understanding of signs of deterioration to look for and who to contact.

Design This was a longitudinal qualitative feasibility study, within a constructivist paradigm. Parents were taught how to use the CHAT before taking their infant home and asked to participate in semistructured interviews at four time points: before discharge (T0), 2 weeks after discharge (T1), 8 weeks after discharge (T2) and after stage 2 surgery (T3). Interviews were transcribed verbatim and thematically analysed.

Setting One tertiary children’s cardiac centre in the UK.

Subjects Twelve parents of eight infants who were discharged following first stage cardiac surgery for complex congenital heart disease, between August 2013 and February 2015.

Results Four main themes emerged: (1) parental preparation and vigilance, (2) usability, (3) mastery, and (4) reassurance and support.

Conclusions The study highlighted the benefit of appropriately preparing parents before discharge, using the CHAT, to enable identification of normal infant behaviour and to detect signs of clinical deterioration. The study also demonstrated the importance of providing parents with information about when and who to call for management advice and support.

  • cardiac surgery
  • monitoring
  • qualitative research
  • nursing care
  • congenital abnormalities

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Footnotes

  • Contributors KLG (principal investigator), DJB (chief clinical investigator, research team) and JW (senior research fellow) made substantial contributions to the development of the CHAT, design of the study and were members of the External Advisory Group throughout the study. KLG was the main author. JW and DJB contributed to the content, reviewed and revised this paper for submission.

  • Funding Heart Research UK funded the Research Nurse post (0.6WTE) and the equipment (10 pulse oximeters and 10 digital scales) for the feasibility study. This study received the support of NIHR through the Comprehensive Clinical Research Network.

  • Competing interests None declared.

  • Patient consent Not required.

  • Ethics approval Ethical approval was given by the National Research Ethics Committee West Midlands, Solihull; Coventry University Ethics Committee (as sponsors) and the local Research and Development Team at the Study Site.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement Additional, as yet unpublished, data from the larger feasibility study, including data regarding the home monitoring programme; qualitative interview data; parents’ anxiety (GAD7) depression (PHQ9) and confidence (MCS) scores at the four time points is available to the research team and held by KG, principal investigator.

  • Collaborators CHAT Development Group

    Suzie Hutchinson, CEO, Isabel Baumber and Rachel Robinson, Parent Members, Little Hearts Matter; Amanda Daniels, Advanced Nurse Practitioner; Gill Harte, Children’s Cardiac Clinical Nurse Specialist; Professor Gill Furze and Dr Tim Kilner, Coventry University PhD Supervisory Team contributed to the design of the feasibility study and preparation for ethical approval. Dr Charlotte Hilton joined the Supervisory team in 2013. Kim Jones, Lucy Cooper, Melanie Rooney, Needa Mohammed, Research Nurses recruited parents, obtained consent, prepared parents for discharge, collected and analysed data. They are aware of the decision to publish this paper but did not contribute to the content.

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