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Extraordinary Children

"Extraordinary Children" is a study being undertaken at Starship to investigate the relationship between parents and their child's doctor. The co-ordinating investigator is Andrew Thompson, Registered Social Worker, Starship Children's Health. Andrew works at Starship as part of the Consult Liaison Team and has significant experience in working with children and families, particularly around chronic illness and grief. This study forms the basis for Andrew's PhD and is supervised by Professor Innes Asher and Associate Professor Christa Fouche. Ethics approval has been authorised by HDEC (Ministry of Health).

Who is eligible?

Extraordinary Children is looking to recruit 12 families between now and 2017. To be eligible for the study, families need to be caring for a child under the age of 5 with a complex or recently undiagnosed neurological condition. They need to be under the care of a Starship Paediatrician and can be either an outpatient or an inpatient, preferably residing in the Auckland region. Families can contact Andrew directly a.thompson@auckland.ac.nz or Health Professionals working with eligible families can contact Andrew on their behalf.

What is the study about?

"Extraordinary Children" will look at the relationship between parents and their child's doctor, to see how they work and relate together, and the types of communication that help to make this relationship successful. Background literature suggests that parents who are active participants in their child's healthcare can make a positive impact to the outcomes for their child.

Parents of a child with a complex or undiagnosed neurological condition are often going through a difficult time and may feel they are ' in the dark', in a state of grief, feeling frustrated and angry, as they struggle to understand what is happening to their child. The search for a diagnosis may drive them forward to search for new treatments, to connect with global communities and to find new ways to support their children.

The study hopes to identify effective doctor/family communication strategies, and provide insights into the role that information and technology could have in developing future information services for families.

What does the research involve?

For families:

  1. Video or sound-only recording of two hospital appointments between the family and doctor over a six month period

  2. Interview with the family at home to find out how they are managing the relationship with their doctor, how they are managing their child's medical condition, and where they may be accessing information, support and advice.

  3. Follow up interview with the family at home after their second hospital appointment.

For health professionals:

  1. Video or sound-only recording of two hospital appointments between the family and doctor over a six month period

  2. Interview with the health professional at Starship to obtain feedback about the appointment, and how they are managing the relationship with the family.

  3. Follow up interview after the second hospital appointment.

More Information

If you think you would like to be involved in this study, please find more detailed information below:

  1. Information sheet for parents
  2. Information sheet for parents (Chinese)
  3. Information sheet for health professionals

Contact us

Andrew Thompson

Andrew Thompson - Coordinating Investigator

Email:  a.thompson@auckland.ac.nz or phone 027 519 6750

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