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Original research
Exploring communication between parents and clinical teams following children’s heart surgery: a survey in the UK
  1. Christina Pagel1,2,
  2. Catherine Bull2,
  3. Martin Utley1,
  4. Jo Wray3,
  5. David J Barron4,
  6. Serban Stoica5,
  7. Shane M Tibby6,
  8. Victor Tsang3,
  9. Katherine L Brown3
  1. 1 Clinical Operational Research Unit, University College London, London, UK
  2. 2 Department of Paediatric Intensive Care, Great Ormond Street Hospital NHS Foundation Trust, London, UK
  3. 3 Heart and Lung Division, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
  4. 4 Department of Intensive Care and Paediatric Cardiac Surgery, Birmingham Children’s Hospital NHS Foundation Trust, Birmingham, UK
  5. 5 Department of Intensive Care and Paediatric Cardiac Surgery, Bristol Children’s Hospital, Bristol, UK
  6. 6 Department Paediatric Cardiology and Cardiac Surgery, Evelina London Children’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust, London, UK
  1. Correspondence to Professor Christina Pagel; c.pagel{at}ucl.ac.uk

Abstract

Objective To explore communication between clinicians and families of children undergoing heart surgery.

Design This study was part of a larger study to select, define and measure the incidence of postoperative complications in children undergoing heart surgery. Parents of children recruited to a substudy between October 2015 and December 2017 were asked to complete a questionnaire about communication during their child’s inpatient stay. We explored all responses and then disaggregated by the following patient characteristics: presence of a complication, length of stay, hospital site, ethnicity and child’s age. This was a descriptive study only.

Setting Four UK specialist hospitals.

Results We recruited 585 children to the substudy with 385 responses (response rate 66%).

81% of parents reported that new members of staff always introduced themselves (18% sometimes, 1% no). Almost all parents said they were encouraged to be involved in decision-making, but often only to some extent (59% ‘yes, definitely’; 37% ‘to some extent’). Almost two-thirds of parents said they were told different things by different people which left them feeling confused (10% ‘a lot’; 53% ‘sometimes’). Two-thirds (66%) reported that staff were definitely aware of their child’s medical history (31% ‘to some extent’). 90% said the operation was definitely explained to them (9% ‘to some extent’) and 79% that they were definitely told what to do if they were worried after discharge (17% ‘to some extent’).

Parents of children with a complication tended to give less positive responses for involvement in decision-making, consistent communication and staff awareness of their child’s medical history. Parents whose children had longer stays in hospital tended to report lower levels of consistent communication and involvement in decision-making.

Conclusions Our results emphasise the need for consistent communication with families, particularly where complications arise or for children who have longer stays in the hospital.

  • communication
  • paediatric heart surgery
  • health services research

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

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Footnotes

  • Contributors KB and VT: principal investigators (PIs) for the study and responsible for data collection at one hospital. SMT, DB and SS: are local responsible for data collection and study oversight at their hospital site. CP, CB, MU, JW: designed the communication substudy. CP: carried out the analysis of the communication data and wrote the first draft of the paper. All authors apart from CB are co-applicants of the study and designed the overall programme of research. All authors read and commented on the final draft.

  • Funding This project was funded by the National Institute for Health Research Health Services and Delivery Research Programme (project number 12/5005/06). KB and JW were supported by the National Institute for Health Research Biomedical Research Centre at Great Ormond Street Hospital for Children NHS Foundation Trust and University College London.

  • Disclaimer The views and opinions expressed are those of the authors and do not necessarily reflect those of the Health Services and Delivery Research Programme, NIHR, NHS or the Department of Health.

  • Competing interests None declared.

  • Ethics approval Ethical approval was granted by the NRES London City Road and Hampstead Research Ethics Committee (13/LO/1442).

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

  • Patient consent for publication Not required.

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