Experiences of siblings of children with congenital heart disease during Coronavirus disease 2019; A qualitative interview study.

Journal article


Bichard, E., McKeever, S., Bench, S. and Wray, J. (2022). Experiences of siblings of children with congenital heart disease during Coronavirus disease 2019; A qualitative interview study. Journal of Pediatric Nursing. https://doi.org/10.1016/j.pedn.2021.12.019
AuthorsBichard, E., McKeever, S., Bench, S. and Wray, J.
AbstractTo explore siblings' perceptions of having a brother or sister with congenital heart disease in the UK during the COVID-19 pandemic. Siblings of children with congenital heart disease aged 8-17 years old were interviewed via video call technology between September 2020 and February 2021. We conducted reflexive thematic analysis of these interviews to generate themes. Interviews took place with 17 siblings, predominantly of white ethnicity n = 15 (86%). Most siblings interviewed were first born in the family n = 15 (88%), and most children with CHD were the youngest n = 15(88%). Four themes were generated; My sibling is vulnerable, what does this mean for my family, I have a responsibility to protect my brother or sister, our family time during the pandemic and adjustment and adaptations to pandemic life. Siblings identified difficult aspects of the pandemic and these related to concerns about their brother's or sister's vulnerability, family impact, and keeping their sibling safe. They also identified adjustments they made to keep their family functioning throughout the COVID-19 pandemic. Despite the worry and uncertainty siblings experienced, they valued increased family cohesion which helped to mitigate some challenges of the restrictions imposed in the UK. Honest and open communication is valued by siblings. It is vital to ensure siblings receive the support they need to ensure they keep up with their schooling and social commitments as pandemic related restrictions ease. [Abstract copyright: Crown Copyright © 2022. Published by Elsevier Inc. All rights reserved.]
KeywordsHeart defect; Pediatric; Congenital Heart Defect; COVID19; Heart disease; Congenital Heart Disease
Year2022
JournalJournal of Pediatric Nursing
PublisherElsevier
ISSN1532-8449
Digital Object Identifier (DOI)https://doi.org/10.1016/j.pedn.2021.12.019
Web address (URL)https://www.sciencedirect.com/science/article/pii/S0882596321003870
Publication dates
Print19 Jan 2022
Online19 Jan 2022
Publication process dates
Accepted22 Dec 2021
Deposited15 Feb 2022
Accepted author manuscript
License
File Access Level
Open
Permalink -

https://openresearch.lsbu.ac.uk/item/8z2xv

Restricted files

Accepted author manuscript

  • 50
    total views
  • 5
    total downloads
  • 2
    views this month
  • 0
    downloads this month

Export as

Related outputs

How COVID-19 has affected staffing models in intensive care: A qualitative study examining alternative staffing models (SEISMIC).
Endacott, R., Pearce, S., Rae, P., Richardson, A., Bench, S., Pattison, N. and SEISMIC Study Team (2021). How COVID-19 has affected staffing models in intensive care: A qualitative study examining alternative staffing models (SEISMIC). Journal of Advanced Nursing. https://doi.org/10.1111/jan.15081
Prevalence and experience of fatigue in survivors of critical illness: a mixed‐methods systematic review
Bench, S., Stayt, L., Shah, A., Dhiman, P. and Czuber‐Dochan, W. (2021). Prevalence and experience of fatigue in survivors of critical illness: a mixed‐methods systematic review. Anaesthesia. 76 (9), pp. 1233-1244. https://doi.org/10.1111/anae.15441
Clinical Academic Research Internships: what works for nurses and the wider nursing, midwifery and allied health professional workforce
Olive, P., Maxton, Fiona, Bell, Cate Ann, Bench, Suzanne, Tinkler, Linda, Jones, Steph and Kenkre, Joyce (2020). Clinical Academic Research Internships: what works for nurses and the wider nursing, midwifery and allied health professional workforce. Journal of Clinical Nursing. https://doi.org/10.1111/jocn.15611
Exploring adult critical illness survivors’ experiences of fatigue; a qualitative study
Bench, S., Czuber-Dochan, W., Shah, A. and Stayt, L. (2021). Exploring adult critical illness survivors’ experiences of fatigue; a qualitative study. Journal of Advanced Nursing. https://doi.org/10.1111/jan.14995
Healthcare stakeholders’ perceptions and experiences of factors affecting the implementation of critical care telemedicine (CCT): qualitative evidence synthesis
Xyrichis, A., Iliopoulou, K., Mackintosh, N.J., Bench, S., Terblanche, M., Philippou, J. and Sandall, J. (2021). Healthcare stakeholders’ perceptions and experiences of factors affecting the implementation of critical care telemedicine (CCT): qualitative evidence synthesis. Cochrane Database of Systematic Reviews. 2017 (11). https://doi.org/10.1002/14651858.cd012876.pub2
The psychological burden of restricted parental visiting in paediatric intensive care
Bichard, E. and Herring, D. (2020). The psychological burden of restricted parental visiting in paediatric intensive care. Nursing in Critical Care. 25 (6), pp. 379-381. https://doi.org/10.1111/nicc.12544
Critical Care Nurses' Views and Experiences of Preanalytical Factors Influencing Point-of-Care Testing A Qualitative Study
Bench, S. (2020). Critical Care Nurses' Views and Experiences of Preanalytical Factors Influencing Point-of-Care Testing A Qualitative Study. Point of Care: The Journal of Near-Patient Testing and Technology. 19 (4), pp. 97-100. https://doi.org/10.1097/POC.0000000000000212
London Doctoral Academy Postgraduate Research Summer School 2020
Graham, A., Ibrahim, M., Lisson, M., Henfrey, C., Alfandari, N., Ojo, G., Baragau, I., Mansfield, M., Scheel, A., Bichard, E., Hamed Aboelkhair, H., Marjan, A., Hettiarachchi, S. J., Parvin, A., Merton, S., Ahmed-Landeryou, M., Jenkins, C., Alli, U., Atanda, O. and Ganiyu, S. (2020). London Doctoral Academy Postgraduate Research Summer School 2020. London South Bank University.
The Impact of Congenital Heart Disease on Siblings: A Review
Bichard, E., Parker, R., Houghton, S. and McKeever, S. (2020). The Impact of Congenital Heart Disease on Siblings: A Review. London Doctoral Academy Postgraduate Research Summer School 2020. Online 06 - 09 Jul 2020 London South Bank University.
Empathy in Action in Healthcare (EACH): A mixed methods study of nurses' and therapists’ empathy
Catlow, R, Aikins-Snyper, F, Carson, M, Jaggi, A and Bench, S (2020). Empathy in Action in Healthcare (EACH): A mixed methods study of nurses' and therapists’ empathy. International Journal of Orthopaedic and Trauma Nursing. https://doi.org/10.1016/j.ijotn.2020.100777
Impact of congenital heart disease on siblings – a review
Parker, R, Houghton, S., Bichard, E. and McKeever, S. (2020). Impact of congenital heart disease on siblings – a review. The Journal of Child Health Care. 24 (2), pp. 297-316. https://doi.org/10.1177/1367493520914738
Patient and Family Member Experiences in Critical Care Research and Quality Improvement Projects
Bench, S, O'Shea, A and Boaz, Z (2020). Patient and Family Member Experiences in Critical Care Research and Quality Improvement Projects. Nursing Research. https://doi.org/10.1097/nnr.0000000000000443
Neurological Alterations and Management
Bench, S. (2019). Neurological Alterations and Management. in: Aitken, L., Marshall, A. and Chaboyer, W. (ed.) Critical Care Nursing Elsevier.
Involving patients and families in critical care research and quality improvement
Bench, S (2019). Involving patients and families in critical care research and quality improvement. Nursing in Critical Care. 24 (2), pp. 67-69. https://doi.org/10.1111/nicc.12418
Education provision for patients following a spinal cord injury
Rodger, S and Bench, S (2019). Education provision for patients following a spinal cord injury. British Journal of Nursing. 28 (6), pp. 377-381. https://doi.org/10.12968/bjon.2019.28.6.377
A Rapid Review of Educational Preparedness of Advanced Clinical Practitioners
Bench, S (2019). A Rapid Review of Educational Preparedness of Advanced Clinical Practitioners. Journal of Advanced Nursing. https://doi.org/10.1111/jan.14105
Orthopaedic nurses’ engagement in clinical research; an exploration of ideas, facilitators and challenges
Bench, S, Dowie-Baker, J-A. and Fish, P. (2019). Orthopaedic nurses’ engagement in clinical research; an exploration of ideas, facilitators and challenges. International Journal of Orthopaedic and Trauma Nursing. 35, p. 100699. https://doi.org/10.1016/j.ijotn.2019.04.002
Use of a Virtual Reality device for basic life support training; prototype testing and an exploration of users' views and experience
Bench, S and Francis, G (2019). Use of a Virtual Reality device for basic life support training; prototype testing and an exploration of users' views and experience. Simulation in Healthcare. 14 (5), pp. 287-292. https://doi.org/10.1097/SIH.0000000000000387
Randomised Controlled Trials: an introduction for nurse researchers
Bench, S, Day, T and Metcalfe, A (2013). Randomised Controlled Trials: an introduction for nurse researchers. Nurse Researcher. 20 (5), pp. 38-44. https://doi.org/10.7748/nr2013.05.20.5.38.e312
Evaluating the implementation of confusion assessment method-intensive care unit using a quality improvement approach
Stewart, C. and Bench, S. (2018). Evaluating the implementation of confusion assessment method-intensive care unit using a quality improvement approach. Nursing in Critical Care. 23 (4), pp. 172-178. https://doi.org/10.1111/nicc.12354
Ventilator-associated pneumonia and suction: a review of the literature
Letchford, E and Bench, S (2018). Ventilator-associated pneumonia and suction: a review of the literature. British Journal of Nursing. 27 (1), pp. 13-18. https://doi.org/10.12968/bjon.2018.27.1.13
The education and training needs of advanced clinical practitioners: an exploratory, qualitative study
Bench, S, Lee, G, Baker, E, Trenchard-Turner, N, Whaley, S, Peacock, S, Garry, B, Dover, N, Nwosu, W and Worth, T (2018). The education and training needs of advanced clinical practitioners: an exploratory, qualitative study. Journal of Nursing Education and Practice. 8 (8). https://doi.org/10.5430/jnep.v8n8p66
Causes of ATtrition in CHIldren's NursinG (CATCHING): An exploratory mixed method study.
McKeever, S, Whiting, L, Anderson, D and Twycross, AM (2018). Causes of ATtrition in CHIldren's NursinG (CATCHING): An exploratory mixed method study. Nurse Education in Practice. 32, pp. 44-51. https://doi.org/10.1016/j.nepr.2018.06.012
Reviewing interventions supporting parents' well-being after a child’s intensive care unit discharge
Bench, S and Bedford, Z (2018). Reviewing interventions supporting parents' well-being after a child’s intensive care unit discharge. Nursing in Critical Care. https://doi.org/10.1111/nicc.12405
An observational study exploring amplitude-integrated electroencephalogram and spectral edge frequency during paediatric anaesthesia.
McKeever, S, Johnston, L and Davidson, AJ (2012). An observational study exploring amplitude-integrated electroencephalogram and spectral edge frequency during paediatric anaesthesia. Anaesthesia and Intensive Care. 40 (2), pp. 275 - 284.
A review of the utility of EEG depth of anaesthesia monitors in the paediatric intensive care environment.
McKeever, S, Johnston, L and Davidson, A (2012). A review of the utility of EEG depth of anaesthesia monitors in the paediatric intensive care environment. Intensive and Critical Care Nursing. 28 (5), pp. 294 - 303. https://doi.org/10.1016/j.iccn.2012.01.010
Causes of ATtrition in CHIldren’s NursinG (CATCHING) study
McKeever, S, Twycross, AM, Whiting, L, Anderson, D and Anderson, D (2016). Causes of ATtrition in CHIldren’s NursinG (CATCHING) study. Health Education England North Central and East London local office.
Nurse titrated analgesia and sedation in intensive care increases the frequency of comfort assessment and reduces midazolam use in paediatric patients following cardiac surgery.
Larson, GE and McKeever, S (2017). Nurse titrated analgesia and sedation in intensive care increases the frequency of comfort assessment and reduces midazolam use in paediatric patients following cardiac surgery. Australian Critical Care. https://doi.org/10.1016/j.aucc.2017.02.001
Do not disturb! The impact of wearing red aprons on medication administration in PICU
Hewitt, CA, McKeever, S and Giles, S (2017). Do not disturb! The impact of wearing red aprons on medication administration in PICU. The 31st Paediatric Intensive Care Annual Scientific Meeting. Nottingham, UK 11 - 13 Oct 2017
An integrative review of interventions to support parents when managing their child’s pain at home
Twycross, AM, Parker, R, McKeever, S and Wiseman, T (2017). An integrative review of interventions to support parents when managing their child’s pain at home. Pain Management Nursing. 19 (2), pp. 139-156. https://doi.org/10.1016/j.pmn.2017.10.006
The nature and extent of service user involvement in critical care research and quality improvement; a scoping review of the literature.
Bench, S, Eassom, E and Poursanidou, K (2017). The nature and extent of service user involvement in critical care research and quality improvement; a scoping review of the literature. International Journal of Consumer Studies. 42 (2), pp. 217-231. https://doi.org/10.1111/ijcs.12406
Creating a journal club competition improves paediatric nurses' participation and engagement
McKeever, S, Kinney, S, Lima, S and Newall, F (2016). Creating a journal club competition improves paediatric nurses' participation and engagement. Nurse Education Today. 37, pp. 173 - 177. https://doi.org/10.1016/j.nedt.2015.11.017
Brexit: An uncertain journey
McKeever, S (2016). Brexit: An uncertain journey. Evidence-Based Nursing. 19 (4), pp. 97 - 98. https://doi.org/10.1136/eb-2016-102483
Intensive care discharge summaries for general practice staff: a focus group study
Bench, S, Cornish, J and Xyrichis, A (2016). Intensive care discharge summaries for general practice staff: a focus group study. British Journal of General Practice. 66 (653), pp. e904-e912. https://doi.org/10.3399/bjgp16X688045
Evaluating the feasibility and effectiveness of a critical care discharge information pack for patients and their families: a pilot cluster randomised controlled trial
Bench, S, Day, T, Heelas, K, Hopkins, P, White, C and Griffiths, P (2015). Evaluating the feasibility and effectiveness of a critical care discharge information pack for patients and their families: a pilot cluster randomised controlled trial. BMJ Open. 5 (11), pp. e006852-e006852. https://doi.org/10.1136/bmjopen-2014-006852
Sevoflurane-induced changes in infants' quantifiable electroencephalogram parameters.
McKeever, S, Johnston, L and Davidson, AJ (2014). Sevoflurane-induced changes in infants' quantifiable electroencephalogram parameters. Pediatric Anesthesia. 24 (7), pp. 766 - 773. https://doi.org/10.1111/pan.12366
Providing critical care patients with a personalised discharge summary: A questionnaire survey and retrospective analysis exploring feasibility and effectiveness
Bench, S, Heelas, K, White, C and Griffiths, P (2014). Providing critical care patients with a personalised discharge summary: A questionnaire survey and retrospective analysis exploring feasibility and effectiveness. Intensive and Critical Care Nursing. 30 (2), pp. 69-76. https://doi.org/10.1016/j.iccn.2013.08.007
Effectiveness of Critical Care Discharge Information in Supporting Early Recovery From Critical Illness
Bench, S, Day, T and Griffiths, P (2013). Effectiveness of Critical Care Discharge Information in Supporting Early Recovery From Critical Illness. Critical Care Nurse. 33 (3), pp. 41-52. https://doi.org/10.4037/ccn2013134
Developing user centred critical care discharge information to support early critical illness rehabilitation using the Medical Research Council's complex interventions framework
Bench, S, Day, TL and Griffiths, P (2012). Developing user centred critical care discharge information to support early critical illness rehabilitation using the Medical Research Council's complex interventions framework. Intensive and Critical Care Nursing. 28 (2), pp. 123-131. https://doi.org/10.1016/j.iccn.2012.02.002
Involving Users in the Development of Effective Critical Care Discharge Information: A Focus Group Study
Bench, S, Day, T and Griffiths, P (2011). Involving Users in the Development of Effective Critical Care Discharge Information: A Focus Group Study. American Journal of Critical Care. 20 (6), pp. 443-452. https://doi.org/10.4037/ajcc2011829
The user experience of critical care discharge: A meta-synthesis of qualitative research
Bench, S and Day, T (2010). The user experience of critical care discharge: A meta-synthesis of qualitative research. International Journal of Nursing Studies. 47 (4), pp. 487-499. https://doi.org/10.1016/j.ijnurstu.2009.11.013
Recognition and management of critical illness by midwives: implications for service provision
Bench, S (2007). Recognition and management of critical illness by midwives: implications for service provision. Journal of Nursing Management. 15 (3), pp. 348-356. https://doi.org/10.1111/j.1365-2834.2007.00759.x
Clinical skills: assessing and treating shock: a nursing perspective
Bench, S (2004). Clinical skills: assessing and treating shock: a nursing perspective. British Journal of Nursing. 13 (12), pp. 715-721. https://doi.org/10.12968/bjon.2004.13.12.13260