Paediatric Society Conference Summary Notes

Recently, I attended the Paediatric Society New Zealand Conference which bring together clinicians and people who work with children throughout New Zealand (NZ) in a variety of settings. Cerebral Palsy (CP) and other neurological disorders were major features of the presentations. The main theme I will report on this article is examining the introduction of new rehabilitation techniques and emphasising children’s voices in medical settings.

Healthcare professionals in NZ are developing comprehensive studies to investigate the unique aspects and challenges that NZ children face when growing up in NZ. In particular, the transitional period between childhood adolescence and adulthood. These points of reference are particularly complicated when it comes to living with a neurological condition such as CP. Children with CP often need to contend with multiple surgeries, procedures and medical specialties throughout their lifespan. Furthermore, it is not uncommon for individuals with CP to have multiple medical conditions. As scientists develop a more sophisticated understanding of how the brain works and in particular, the development of neuropathways, we begin to understand why there is such an emphasis on different forms of interventions and treatment.

One of the most interesting discussion streams was looking at children’s ability to comprehend their experiences in the healthcare setting. The take-home message is that age is not a reliable predictor of how well somebody can engage in conversation about their own health. Children who were able to actively discuss and have input on their treatment plans report greater psychosocial wellbeing. This includes children with additional diagnosis or possible learning impairments as long as the discussions were at an appropriate level for them to understand. This finding is consistent across minor medical procedures and major surgical interventions. Furthermore, the sense of ownership of health can play an important role in transitioning between child and adult services. It is becoming increasingly important to introduce the concept of transition earlier than the intermediate years (13-14) when children are actively confronted with the prospect of change.

Another presentation that was particularly engaging centred on their experiences of a parent with a child who lived with a rare neurological disorder. The key theme within this talk was reframing the notion of “therapy goals” to center around the aspect of life that are important to the family unit rather than medical professionals’. In this situation, therapy became more sustainable because the goals were integrated into the family settings and with extended relatives. For instance, communication boards in multiple houses. This parent’s perspectives are an extension of the F word out of CanChild in Canada. Treatment needs to be functional, family-centred, fitness-centred, involve fun for the child, incorporate friendship and centre on the future. The worthwhile aspect about this paradigm has proven to be effective with all levels and types of cerebral palsy. In particular, helping families and medical professionals emphasise goals for children with level 4 and 5 who may not be able to communicate conventionally. This technique has also been modified to incorporate intellectual consideration, languages and for centres.

One of the most engaging aspects of the conference was developing  more comprehensive overview of the movements within the New Zealand healthcare system to increase the overall effectiveness of paediatrics. In particular, the reach of programmes such as vaccination and surveillance of chronic issues such as hip dysplasia and bone density problems. The Paediatric Society Clinical Networks are developing systems to formalize best-practice guidelines and knowledge translation throughout the country. The Cerebral Palsy Society is working on the same principles for cerebral palsy. Some of our areas of interest include early diagnosis, treatment and innovations like intensive rehabilitation, and transitioning from paediatric to adult services.

If you would like copies of the specific articles or notes, please feel free to email me amy@cpsociety.org.nz

General Points

• The neonatal and infant brain progresses it through many changes in the first 1000 days. The latest research demonstrates that the first 2000 days are the most productive and influential in the child’s future development.
• Most recent research (2018-2019) demonstrate that young babies are not as resilient to brain injury as first thought. The rapid growth and development of myelination can struggle to recover if the process is interrupted by a brain injury.
• New Zealand is joining an international movement to produce long term longitudinal study looking at the overall development of a large cohort of children throughout their childhood and adolescence. In America, there is a famous health insurance study looking at 17,000 people on the scheme. Out of this study came a recognition of some of the risk factors for poor development and life experiences.
• New Zealand has the Grown up in New Zealand study which is developing along the same trajectories. However, the researchers are trying to incorporate New Zealand specific factors such as the influence of Maori and Pacifica people as well as our environmental considerations.
• Adverse childhood experiences (ACE) are a scale of measurement that looks at all the risk factors for poor life outcomes and “scores” them based on how many adverse events the child experiences. These include physical violence, absentee parents and drug abuse in the home.
• In specific parts of New Zealand, children can have four or more ACE’s. Similarly, their parents can have scores that reflect a similar pattern.
• The right of a child to give consent in medical situation is a controversial but not well-understood legal situations. The New Zealand system is modelled on a British statute called Gillick’s law (Gillick competence) and this statute states that if a child is competent and understand the procedure, they have a right to be involved in decision-making.
• In all the studies on children competence, age is not a reliable predictor of their availability to make decisions, rather other factors come into play. These factors include the independence of the child, overall intelligence, psychological wellness, effective communication and family dynamics.
• Across multiple health condition and interventions, it has been demonstrated that children respond better to a perceived level of control in their own medical experiences. In particular, if they have multiple or chronic conditions.
• Interestingly, children’s ability to decline a procedure is better understood and documented than their ability to actively consent to a procedure. These situations can become complicated if the parents or guardians are in conflict over how to proceed.