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Original article
Children and young people’s versus parents’ responses in an English national inpatient survey
  1. Dougal S Hargreaves1,7,
  2. Steve Sizmur2,
  3. Jacqueline Pitchforth1,
  4. Amy Tallett2,
  5. Sara L Toomey3,4,
  6. Bridget Hopwood2,
  7. Mark A Schuster3,4,5,
  8. Russell M Viner1
  1. 1 Population, Policy and Practice Programme, UCL Great Ormond Street Institute of Child Health, London, UK
  2. 2 Picker Institute Europe, Oxford, UK
  3. 3 Division of General Pediatrics, Boston Children’s Hospital, Boston, Massachusetts, USA
  4. 4 Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, UK
  5. 5 Kaiser Permanente School of Medicine, Pasadena, USA
  6. 7 The Nuffield Trust, London, UK
  1. Correspondence to Dr Dougal S Hargreaves, Population, Policy and Practice Programme, UCL Great Ormond Street Institute of Child Health, London, WC1N 1EH, UK; d.hargreaves{at}ucl.ac.uk

Abstract

Objective Despite growing interest in children and young people’s (CYP) perspectives on healthcare, they continue to be excluded from many patient experience surveys. This study investigated the feasibility of, and additional information gained by, measuring CYP experiences of a recent hospital admission.

Design Cross-sectional analysis of national survey data.

Setting Inpatients aged 8–15 years in eligible National Health Service hospitals, July–September 2014.

Participants 6204 parents/carers completed the parent section of the survey. The CYP section of the survey was completed by CYP themselves (n=3592), parents (n=849) or jointly (n=1763).

Main outcome measures Pain relief, involvement, quality of staff communication, perceived safety, ward environment, overall experience.

Analyses Single-measures intraclass correlations (ICCs) were used to assess the concordance between CYP and parent responses about the same inpatient episode. Multilevel logistic regression models, adjusted for individual characteristics, were used to compare the odds of positive responses when the CYP section of the survey was completed by parents, by CYP themselves or jointly.

Results The CYP section of the survey was completed independently by 57.8% of CYP. Agreement between CYP and parent responses was reasonably good for pain relief (ICC=0.61 (95% CI 0.58 to 0.63)) and overall experience (ICC=0.70 (95% CI 0.68 to 0.72)), but much lower for questions comparing professionals’ communication with CYP and with their parents (ICC range=0.28 (95% CI 0.24 to 0.32) to 0.51 (95% CI 0.47 to 0.54)). In the regression models, CYP were significantly less likely than parents to report feeling safe (adjusted OR (AOR)=0.54 (95% CI 0.38 to 0.76)), involvement in decisions (AOR=0.66 (95% CI 0.46 to 0.94)) or adequate privacy (AOR=0.68 (95% CI 0.52 to 0.89)).

Conclusions Including CYP (8–15 years) in patient experience surveys is feasible and enhances what is known from parents’ responses.

  • children
  • young people
  • patient perspective
  • inpatient experience
  • measurement

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/archdischild-2017-313801

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    Footnotes

    • Contributors DSH, SS, JP, AT, RMV conceived and designed the study. SS performed all analyses. All authors critically reviewed the manuscript. SS and DSH are the guarantors. DSH affirms that the manuscript is an honest, accurate and transparent account of the study being reported; that no important aspects of the study have been omitted and that any discrepancies from the study as planned (and, if relevant, registered) have been explained. All authors, external and internal, had full access to all of the data (including statistical reports and tables) in the study and can take responsibility for the integrity of the data and the accuracy of the data analysis.

    • Competing interests SS, AT and BH are employed by Picker Institute Europe, which provides survey coordination services for the NHS patient surveys under contract to the Care Quality Commission. DSH is supported by the Health Foundation.

    • Ethics approval These were secondary analyses of anonymised data and were approved by the Care Quality Commission. The survey implementation itself was given a favourable ethical opinion by NRES Committees—North of Scotland ref 14/NS/0006.

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