We would like to thank Nurse Specialists Helen Silk, Christie Fox and Kay Dyer for their assistance with recruitment and to extend our deepest gratitude to all of the parents who kindly agreed to be interviewed and made our study possible.
We would like to thank the professionals from tertiary, secondary and primary care who agreed to be interviewed for the study.
We would like to thank the CHF and Little Hearts Matter for their invaluable assistance with the study, and to thank the family members who posted on the online forum.
Author contributions
Katherine L Brown: study design, participated in all stages of conducting and writing up the research.
Jo Wray: study design, participated in all stages of conducting and writing up the research.
Rachel L Knowles: study design, participated in all stages of conducting and writing up the research.
Sonya Crowe: contributed to study design, primary analytical role for national audit data and writing up quantitative research, participated in conducting and writing up the qualitative research and facilitated the intervention development.
Jenifer Tregay: contributed to study design, primary role in qualitative research and systematic reviews, participated in all stages of conducting and writing up the research.
Deborah Ridout: contributed to study design, performed statistical analyses, contributed to writing up the quantitative research.
David J Barron: contributed to study design and writing up clinical aspects of the research.
David Cunningham: performed the data search in NCHDA and the data linkage, and contributed to the quantitative research.
Roger Parslow: contributed to the data search within PICANet and to the quantitative research.
Rodney Franklin: contributed to study design, intervention development and writing up clinical aspects of the research.
Nick Barnes: contributed to intervention development and writing up clinical aspects of the research.
Sally Hull: contributed to intervention development and writing up clinical aspects of the research.
Catherine Bull: study design, participated in all stages of conducting and writing up the the research.
Contributor roles
Liz Smith (Great Ormond Street Hospital NHS Foundation Trust): attended intervention development workshops, co-led family workshop and commented on intervention materials.
Martin Utley (Clinical Operational Research Unit, University College London): operational research contributor.
Faith Gibson (Great Ormond Street Hospital NHS Foundation Trust): qualitative research contributor.
Piers Daubeney (Royal Brompton and Harefield NHS Foundation Trust): tertiary professional consultant.
Rohini Simbodyal (CHF): user group consultant.
Suzie Hutchinson (Little Hearts Matter): attended intervention development workshop and commented on intervention materials.
Hannah Charrot (Cambridgeshire Community Services NHS Trust): attended intervention development workshop and commented on intervention materials.
Jan Pennington (Barts Health NHS Trust): attended intervention development workshop and commented on intervention materials.
Publications
Tregay J, Wray J, Bull C, Franklin RC, Daubeney P, Barron DJ, et al. Unexpected deaths and unplanned re-admissions in infants discharged home after cardiac surgery: a systematic review of potential risk factors. Cardiol Young 2015;25:839–52.
Tregay J, Brown KL, Crowe S, Bull C, Knowles RL, Smith L, et al. Signs of deterioration in infants discharged home following congenital heart surgery in the first year of life: a qualitative study [published online ahead of print 28 January 2016]. Arch Dis Child 2016
Tregay J, Wray J, Crowe S, Knowles R, Daubeney P, Franklin R, et al. Going home after infant cardiac surgery: a UK qualitative study. Arch Dis Child 2016;101:320–5.
Tregay J, Brown K, Crowe S, Bull C, Knowles R, Wray J. “I was so worried about every drop of milk” - feeding problems at home are a significant concern for parents after major heart surgery in infancy [published online ahead of print 19 February 2016]. Matern Child Nutr 2016.
Crowe S, Ridout DA, Knowles R, Tregay J, Wray J, Barron DJ, et al. Death and emergency readmission of infants discharged after interventions for congenital heart disease: a national study of 7643 infants to inform service improvement. J Am Heart Assoc 2016; in press.
Crowe S, Knowles R, Wray J, Tregay J, Ridout DA, Utley M, et al. Identifying ways to improvements to complex multi-sector pathways: systematic evidence synthesis and multi-stakeholder engagement in infant congenital heart disease. BMJ Open 2016; in press.
Data sharing statement
The quantitative data and analyses presented as part of this study were undertaken with specific approvals from the Health Research Authority, the Health Quality Improvement Partnership and the National Audits, NCHDA and PICANet. The research dataset that underpins this work is available for future research as long as equivalent approvals from these organizations are sought and granted. Given the complexity of this dataset, members of the infant heart study team would be required to act in an advisory capacity should further work be undertaken involving this dataset. Further information can be obtained from the corresponding author.
The qualitative data presented as part of this study are not suitable for sharing beyond that contained within the report. Further information can be obtained from the corresponding author.
Disclaimers
This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health.
