Your Smartest Friend in Life – Case Study
Living with Spina Bifida
If you have read Our Story and Vision page, you will have read about our Founder’s (Neil Movold) journey through two serious medical crisis in his life so far. This case study takes a closer look at the situation with his son Jaden, who was born with spina bifida at Starship Children’s Hospital in Auckland, New Zealand.
When parents find out they are going to have a child with spina bifida, it can be overwhelming. Having a new baby is an exciting and challenging time. New parents often feel many different emotions―such as love, joy, happiness, worry, and exhaustion. The same goes for parents who have a child affected by spina bifida.
A unfamiliar set of challenges
However, in addition to adjusting to life with a new baby, parents of a child with spina bifida need to learn a lot more than able bodied families do to prepare for the needs of their child and their new life together.
As the birth of their son drew near, Neil and his wife found themselves thinking about the following challenges that lie ahead:
- What will be required to take care of Jaden’s various medical conditions after he is born?
- e.g. physiotherapy, toileting, daily routines while at school or home
- What services and support will there be available after Jaden is born in the city/region of the country where they live?
- e.g. financial aid, emotional/social assistance, assistive equipment support, ongoing medical checkups and reviews
- Are there any other families who have children with spina bifida that they could talk to and how do they find them?
- How would they survive financially now that Neil’s career path was significantly affected and his wife could no longer work for the foreseeable future?
- What is the life expectancy of a child with spina bifida?
Better understanding of what lies ahead than living just day-to-day
Lower family stress and frustrations
Best people and services to deal with our individual circumstances
Better Quality of Life
More time spent on quality of life than dealing with the challenges
What we didn’t know
As this was the first time in their lives that they were confronted with such a complex situation, it became clear as the day-to-day approach to living progressed that what they didn’t know was more important than what they did know.
Trying to find answers to their challenges from the specialist medical staff at the hospital became pointless. These highly trained individuals were fantastic at their medical specialities (e.g. neurology, orthopedics), but they neither knew of or had time to know about the questions being asked and be capable of answering them.
Some answers were found via random discussions with other parents, often while waiting at various outpatient clinics. However, this is a highly inefficient way to deal with the challenges.
Exploring life with Spina Bifida
Below is a Thought Canvas created by Neil and his wife to help them explore and find answers to the various challenges they are facing. Click on the image to enlarge it for better viewing.
The Canvas explores a number of key areas most parents are confronted with when they have a child with disabilities, including medical conditions, quality of life, support services and health issues and treatments. Since Neil and his family live in New Zealand, there is some level of focus on those areas which are influenced by where they live, such as government services.
Delving into Health Issues and Treatments using the Canvas
There is a lot of value that has been taken so far from this Canvas by Neil and his wife. In particular, one of the biggest areas that families deal with is health issues and treatments as they directly affect day-to-day living. There is no cure to spina bifida, so a great deal of focus is placed on managing the various ongoing and future health issues.
Even more important is how the various health issues are dealt with as that greatly depends on individual family circumstances, which is very difficult for the public health system to deal with.
The area of the Canvas dealing with Health Issues and Treatment has been very helpful to Neil and his family in the following ways:
- it has enabled identification and deeper understanding of the various health issues common for individuals with spina bifida
- the ongoing discovery of new information and ideas on how to deal with the issues at home – at times providing a more convenient and less stressful way of managing an issue
- insights into how health issues are handled around the world, enabling discussions to take place with local medical and support resources to collaborate on better ways to deal with specific health issues (e.g. a new plan to coordinate toileting issues between school and home environments was created)
- having a better understanding of the ongoing health issues has immensely helped Neil and his family be better prepared for their day-to-day living and the life that lays ahead
Without the use of this Canvas, it would have been much more complicated and frustrating for Neil and his wife to keep track of all the aspects of their lives living with spina bifida, including trying to keep up with any new advances in ways of dealing with the related health issues.
General Benefits for families dealing with medical issues
- Gain a quicker and better understanding of the best people and services to deal with to help the situation
- Lower stress levels and emotionally negative impact on families
- Faster time back to a position of stability and less dependency on social services – being in control rather than being controlled
- Less time, standing in lines waiting for services or waiting for a case manager to help with your situation
General Benefits for organisations providing assistance
- More focus on outcomes rather not being able to get the information out
- Lower costs of services with greater value provided
- More meaningful and fulfilling engagement with clients
- Better use of existing resources to create tangible value for clients
- Efficient re-use of what works across clients, which typically is hard to identify
- Harness disparate information sources within and across relevant organisations to create more impactive value to individuals and families in need of support
Let’s have a chat
Whether you are an individual with a personal crisis, a parent challenged with a complex family situation or you are interested in understanding if our solution can help a friend or group you are involved with, get in contact with us and we can discuss your situation and needs.
We will be upfront and transparent with you around our capabilities as we want nothing less than a win-win outcome.