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RESEARCH individual and family-centered resources like Healthify ( www. healthify.nz ) can offer valuable support and information. Things to consider When reading through information, testimonials or advertising look for interventions, or different schools of thought, that resonate with you or your whānau. • How do individuals or organisations talk about Cerebral Palsy? E.g. do they have a comprehensive understanding of the condition itself or are they talking about general neurological disorders? Do they talk about the ‘tragedy of disability’? • Are they talking about everyday outcomes specific for you or your child rather than general statements about walking? • How clearly do they explain the resources or investments required? E.g. is there a single cost for a single intervention? Or does it require follow up? Is the parent/caregiver/support worker expected to play a large role in the follow up? Amy Hogan is the Cerebral Palsy Society’s Researcher and Member Support Advisor. • What follow up or maintenance is required at home? Does this work require the purchase of additional equipment or specific dedicated time? • How easy is it to access support around this intervention? E.g. follow up questions, experience of people at different stages, fitting into existing or changing circumstances. • When organisations or groups are posting testimonials, are there any that follow up a year, two years, or five years later? • Is there easy or practical follow up in your region? • Has the individual or organisation talked about the stamina or cognitive load that this particular intervention may require when building it into everyday life? • Can you easily build this intervention into the everyday routine for you or your family? There are stages of grief that come with a new or changing diagnosis, or when a person is in a different life stage. Wanting to feel like you are doing, or have done, everything possible to change the situation is the most human instinct for whānau Navigating the best options for your circumstances, or those of your whānau, can be challenging. and individuals experiencing their own connection to disability and disablement. It can be a tough road to navigate. Therefore, people offering specialist insights can be increasingly appealing, especially when it comes to making a measurable difference on a particular aspect of disability that’s really bothering a person at that moment. It pays to remember that there are times when Cerebral Palsy can be extremely important and all-consuming, and times when it recedes into the background. During the course of a life, the experience of Cerebral Palsy will look and feel different – for everyone. If you would like to read more, feel free to contact me at amy@cpsociety.org.nz . Opposite page : Figure 1. The experience of individuals living with CP. Above: Figure 2. An illustration of how parents talked about the process of understanding CP. SEPT 2024 THE REVIEW | 21