Overview

Discovering that a child has a serious illness/ injury is distressing for parents. Along with the emotions and worries of having an ill child, spending time at the hospital for treatment also brings many changes to how the family functions day-to-day.

Families adjust differently, so it is important for us to work out at an early stage which families may benefit from additional support services, which will help them and their child in the short term and well into the future.

Our program of research recruited parents of children admitted across four hospital departments at The Royal Children’s Hospital:

• Parents of a child who was admitted to the intensive care unit, for a stay longer than 48 hours.
• Parents who had a child diagnosed with a form of cancer.
• Parents who had a child that required heart surgery within a month after birth.
• Parents who had a child diagnosed with a serious neurological condition.

Research team

Our team consists of a number of researchers, psychologists, mental health clinicians and medical doctors, both locally and internationally.

Murdoch Children's Research Institute

• Professor Vicki Anderson
• Dr Frank Muscara
• Dr Meredith Rayner
• Anica Dimovski
• Dr Jackie Yamada
• Laura McMillan
• Stephen Hearps

The Royal Children’s Hospital

• Dr Maria McCarthy
• Dr Byrn Jones
• Professor Warwick Butt
• Professor Katrina Williams
• Mrs. Jenny O’Neill

La Trobe University

• Professor Jan Nicholson

The University of Queensland

• Dr Kylie Burke

TLConsulation Servies

• Robyn Walser

Our research

A team of researchers, psychologists and mental health clinicians at the Murdoch Children's Research Institute and The Royal Children’s Hospital in Melbourne have been conducting a research program over several years, which comprises several studies:

1. Take a Breath Cohort study: This was a longitudinal study in which parents completed a series of questionnaires over a two-year period. We asked how parents were feeling and adjusting to their child’s illness or injury. This has helped us to better understand and identify families that may benefit from further psychosocial support. We completed this in 2014.
    
2. Take a Breath Pilot Studies: After the initial development of the Take a Breath parent program, a series of pilot studies were conducted to explore the feasibility, usability, and usefulness of the program. Both face to face and video-conferencing modes of delivery were explored, and they favoured the videoconferencing platform as it allowed a greater number of parents across Australia to take part. We completed these pilots in 2014. We also completed two small pilots to explore the applicability of the Take a Breath Program for parents of children with a chronic illness: Cerebral Palsy and Chronic Fatigue Syndrome (the latter included work with both adolescents and their parents). We completed these in 2015.
    
3. Take a Breath Randomised Controlled Trial (RCT): We are currently evaluating the Take a Breath program in a large study across different hospital departments. In this trial, Take a Breath is being delivered online using videoconferencing so that the families in most need can take part from the comfort of their own home, anywhere in Australia. 

Collaborators

Funding partners

We would like to acknowledge the generous funding support for the program of research.

Cohort and Pilot Studies

• Pratt Foundation
• The Victorian Department of Human Services
• Scobie and Claire Mackinnon Trust (Cerebral Palsy Pilot Study)

The RCT

• The Royal Children’s Hospital Foundation (RCT)

Our parents

We would like to thank the parents who took part in the research. Without your support and involvement, this research would not be possible. We approached you for the study at a very stressful time and we are truly grateful that you agreed to take part in this research and continued to do so. Your contribution has not only helped us to better understand what it is like for families in your situation, but has also led to the development of a Parent Program aimed at supporting parents in need.

The Royal Children’s Hospital staff

A big thank you to the social workers, medical staff, nurses and mental health clinicians across the Cardiology, Oncology, PICU, Neurology, General Medicine, and Neo-natal Intensive Care wards of The Royal Children’s Hospital, as well as the PICU reception staff for their help with the recruitment of families.  

Our staff

Finally, we would also like to thank all staff, students, volunteers and student interns that have been part of the Take a Breath team in the past and present who have contributed to the running of this research project at various stages. 

Publications

Rayner et al., (2016). Take A Breath: Study Protocol for a Randomized Controlled Trial of an Online Group Intervention to Reduce Traumatic Stress in Parents of Children with a Life-threatening Illness or Injury. BMC Psychiatry, 16, 169. DOI: 10.1186/s12888-016-0861-2 

Rayner et al., (2016). Participating From the Comfort of Your Living Room: Feasibility of a Group Videoconferencing Intervention to Reduce Distress in Parents of Children with a Serious Illness or Injury. Child and Family Behavior Therapy, 38(3), 209-224. DOI: 10.1080/07317107.2016.1203145

Woolf, C., Muscara, F., Anderson, V.A., & McCarthy, M.C. (2016). Early Traumatic Stress Responses in Parents Following a Serious Illness in their Child: A Systematic Review. Journal of Clinical Psychology in Medical Settings, 23(1), 53-66. DOI: 10.1007/s10880-015-9430-y

Muscara, F., McCarthy, M.C., Woolf, C., Hearps, S.J.C., Burke, K., Anderson, V.A. (2015). Early psychological reactions in parents of children with a life threatening illness within a pediatric hospital setting. European Psychiatry, 30, 555-561.

Muscara, F., Burke, K., McCarthy, M., Anderson, V., Hearps, S. J. C., Hearps, S. J., Dimovski, A., & Nicholson, J., (2015). Parent distress reactions following a serious illness or injury in their child: a protocol paper for the take a breath cohort study. BMC Psychiatry, 15:153. DOI: 10.1186/s12888-015-0519-5

Hearps, S.J. McCarthy, M.C., Muscara, F., Hearps, S. J. C., Burke, K., Jones, B., & Anderson, V.A. (2014). Psychosocial risk in families of infants undergoing surgery for a serious congenital heart disease. Cardiology in the Young, 24 (04), 632-639. DOI:10.1017/S1047951113000760

Burke, K., Muscara, F., McCarthy, M., Dimovski, A., Hearps, S., Anderson, V., & Walser, R. (2014). Adapting acceptance and commitment therapy for parents of children with life-threatening illness: Pilot study. Families, Systems, & Health, 32(1), 122-127. DOI: 10.1037/fsh0000012

If you would like to know more about the data and collaboration opportunities with Take a Breath, please contact us.

Contact us

Dr Frank Muscara
Dr Meredith Rayner
Email:  show email address .