DOWN SYNDROME OR RETT SYNDROME IN THE FAMILY: PARENTAL REFLECTIONS ON SIBLING EXPERIENCE

Reflections on this episode:

This study explores the unique family experiences from the perspective of parents with children diagnosed with Down syndrome (156 families) or Rett syndrome (149 families). Through questionnaires, this study investigates the perceived advantages and disadvantages siblings face, as well as the impacts on holidays and recreational activities, alongside the parents' perceived availability of time. 

The results revealed that parents consistently noted positive personality traits, an optimistic outlook, enhanced skills, and rich relationships as advantages for siblings in both groups. However, parents of children with Rett syndrome reported lower availability of time and more difficulties in social engagement and family holidays for siblings. 

The study concludes that parents' perceptions vary with the type of disability and reflect the capabilities of the child with a disability. It also suggests that sibling experiences can be better understood by directly gathering data from siblings themselves to explore ways to enhance their experiences.

I love that this study documents the strengths children with Down and Rett Syndrome have. It is incredibly unique! The perspective of siblings is also unique and it is just so wonderful to not always just focus on the negative aspects but the positive ones including the fact that by being included in therapy with their sibling, they can also get some great benefits too. Reports like this serve to relieve some of the guilt that parents inevitably feel when they are already trying to do so much for their children.

PRIORITISED STRATEGIES TO IMPROVE DIAGNOSIS AND EARLY MANAGEMENT OF CEREBRAL PALSY FOR BOTH MAORI AND NON-MAORI FAMILIES

Reflections on this episode:

Improving service delivery and enabling earlier detection of CP is a priority globally; for example, work from Australia and the USA has been informing and trialing new models of care. However, this requires the addition of local and culturally specific information, to ensure that they are transferable to individual countries and health settings.

The aim of this paper was to identify prioritised strategies to support improvements in early health service delivery around the diagnosis and management of cerebral palsy for both Maori and non-Maori individuals. Using a participatory approach, health care professionals and the parents of children with CP attended co-design workshops on the topic of early diagnosis and management.

The results revealed the critical need for improved communication, support and guidance as well as education for families navigating their child with CP through the health care system.

I believe that papers like this are very important. Whilst we know what the recommendations are now because they are widely known, well published and internationally accepted, how we implement them needs careful consideration. We need to be involving the context and culturally relevant stakeholders if we want to be implementing any sustainable change. 

This paper provides a beautifully laid out methodology for anyone who is thinking about embedding an early detection pathway in their country. Whilst we are seeing very similar themes across the world, the specific communication strategies and methods along with context specific support and guidance needs to be in line with local funding structures and expertise.

A FAMILY-TAILORED EARLY MOTOR INTERVENTION (EMI-HEART) FOR INFANTS WITH COMPLEX CONGENITAL HEART DISEASE: STUDY PROTOCOL FOR A FEASIBILITY RCT

Reflections on this epsiode:

The beauty of this paper is that we can generalise what we know about early intervention principles in infants with cerebral palsy, directly to this vulnerable and understudied population.

Once again, we are seeing the results of studies that were carried out during the COVID-19 phase of our lives. The most interesting thing here is how valuable telehealth is in a sub-acute population. There is so much value in supporting families in this kind of way and it really encourages us as therapists to be the coach, empowering parents to problem solve and follow their instincts about their child. 

Elena talks with such compassion with a tangible generous spirit that really does translate into her qualitative work. Supporting families by helping them to navigate through therapeutic interventions after major surgery is an important role for therapists and I encourage any clinician working with a sub-acute population to tune in to this episode. 

We can learn a great deal by listening to the voices of families that have been through a very significant and unexpected phase of not only their life but also their child’s life.

CHEMICAL ANALYSIS OF FRESH AND AGED AUSTRALIAN E-CIGARETTE LIQUIDS.

ELECTRONIC CIGARETTE USAGE PATTERNS AND PERCEPTIONS IN ADULT AUSTRALIANS: 

Reflections on this episode (Dr Pool)

E-cigarette use is common in Australia with a notable uptake of e-cigarettes in Australians aged over 60 years. E-cigarette use has often been seen as a potential way to quit or reduce tobacco smoking. Yet, in Australia, use of e-cigarettes more than doubled in all adults aged over 18 years. The perception is that e-cigarettes are completely safe to use long term however, this is not well supported in the literature. 

This was a very timely and insightful conversation. There is so much misinformation out there but even more importantly, the use of e-cigarettes in our young people is increasingly common and this is of concern. So far, the evidence on the effects of vaping don’t look great! The attractive flavour profiles combined with the mechanism of heating up the liquid to then rapidly cooling down the liquid has some serious implications particularly with regard to changes in the chemical profile. All of this is then inhaled, entering circulation! 

It was very insightful to learn that using e-cigarettes isn’t effective in quitting tobacco smoking. A myth that many of us may have heard of before but do not have the answers to. Whilst there is much confusion about the sale of e-cigarettes, it was comforting to know that it is illegal to sell in Western Australia. What was puzzling though is the high rates of usage! 

This whole  area really does highlight the value and importance of scientific research to provide the evidence to support legislation. Translation of findings into practice requires urgency and there is much to learn within this space. 

This episode is highly relevant for all! Whether you are a therapist, teacher, parent, aunty or uncle - we need to stay on top of the science here so that we can provide the best advice to guide the young people that are in our lives.

Visit uncloud.org for the truth behind vaping!

https://www.uncloud.org

FROM GUIDELINES TO PRACTICE: A RETROSPECTIVE CLINICAL COHORT STUDY INVESTIGATING IMPLEMENTATION OF THE EARLY DETECTION GUIDELINES FOR CEREBRAL PALSY IN A STATE-WIDE EARLY INTERVENTION SERVICE

In this retrospective longitudinal cohort study that was completed in Western Australia’s tertiary paediatric early intervention service, knowledge translation strategies which included consumer  perspectives, clinician training and communities of practices guided implementation.  

With referral number and age, delivery of early detection and intervention following the implementation of the guidelines, it was found that the implementation strategies were effective in reducing referral age with improved delivery of early detection assessments.  

This has some very important implications on both short and long term health outcomes.  

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Sue-Anne Davidson is the Manager of Kids Rehab WA at the Perth Children’s Hospital and a PhD candidate at Curtin University. She has over 15 years experience in the design, implementation, and evaluation of tertiary paediatric rehabilitation services at PCH.  

Sue-Anne’s experience in clinical, management and leadership has enabled her to lead improvements within the tertiary hospital setting to improve accessible, equitable and sustainable services for children and adolescents in WA.   

She has served on several committees including the Disability Health Network’s Executive Advisory group and the WA Sustainable Health Review Clinical Reference Group. She is now the Co-Chair of the Child and Adolescent Health Service Disability Access and Inclusion Committee.   

Sue-Anne has a Masters in Health Administration and is a PhD candidate with her studies focusing on the development of a state-wide early detection network for children at high risk of CP and neurodevelopmental disability, linked to national and international best practice models.