Book Creator helps transform the therapy experience of families affected by disability

Last year, we spoke to Annick Janson from EcoSynergy Group. She was passionately excited to tell us about how she had been using Book Creator with families affected by disability.

This is not an area in which we have any experience, and once again we have been astonished at the creative use of Book Creator in situations that we had never envisaged. It’s humbling to see that Book Creator can help make a real difference to families in a potentially difficult and stressful situation.

The case study below has been drafted by the team at Plumtree who have piloted this project. We are genuinely grateful to them for using Book Creator so innovatively and for wanting to share their story with us.

About Plumtree

Plumtree is a not-for-profit organization in NSW, Australia, that provides support for young children with a developmental delay or disability and their families.

We help children to grow and develop, reach their potential and participate in the community. Recently, we formed a new team to pilot a program we have developed called Now and Next, which helps families to choose goals and make plans, organize their support and learn from their experience, while staying focused on the next steps.

How did we start using Book Creator?

Our aim was to radically transform parents’ early experiences of the disability sector, so we searched for technology that could support effective planning and be a vehicle through which we could promote collaboration between staff and families. Above all, we wanted this technology to be easy and enjoyable to use. Book Creator offered the multimedia mechanisms to keep everyone on track to work towards the goals of children, parents and families – to make the plan happen.

Here is a short intro video we put together to introduce Book Creator to our peers:

The Now & Next programme and why Book Creator was a good fit

A better way to record progress

When a family engages with a service in the disability sector, traditionally it is professionals who write and access progress notes which record their intervention. However, parents told us they wanted to have a record of progress to share with their family, friends and child, so we developed a new kind of electronic record using Book Creator. We called these records ‘ebooks’.

Each family works together with the professional to create a personalized book which documents our shared endeavor through Now and Next. Involving the family in this process is also an investment: as one parent remarked, “Professionals come and go with their jobs, but parents continue to lead their children’s progress all their life”.

“For our Now and Next program, Book Creator is a proactive tool to replace traditional ‘after-fact’ professional note taking with a real-time engaging record. It provides a highly interactive and easy way for professionals and families to communicate and exchange information. The Now and Next project is using Book Creator as a tool to assist in the therapy process within a real timeframe.”

Integrate input from our transdisciplinary team

Working with young families often involves many team members who may include key workers, occupational, speech and physiotherapists, social workers, teachers and so on. Coordination and collaboration is facilitated using Book Creator, as the family’s key worker can record video or audio clips from the other team members, as needed.

For instance, a speech therapist may suggest daily activities that the family can do on their own, so she can audio or video record her suggestions in the ebook. Everyone records in the one book, updating is easy and parents can share and revisit suggestions.

Celebrating success and achievements

Recording progress using Book Creator provides a new and concrete way to focus on the strengths and achievements of families.

“We help parents ‘notice’ moments that matter – the kernels of change that need to be celebrated – whereas in real time we often don’t stop to celebrate. Our role is to reaffirm to parents that they are ‘good enough’. We do this by adding fun stickers ‘Well done Mum!’ or encouragement from other team members (including video recordings from the team). Parents need this recognition from us. We can also teach parents to use stickers to celebrate their children’s progress towards goals – they can paste a ‘Well done’ sticker for their child.”

What have we learned from the process?

Parents love using Book Creator

Parents enjoy learning how to use this new technology and this in itself promotes the aims of the Now and Next program, which include building capacity and promoting continuous learning. Families have expressed their enjoyment of this learning at every feedback opportunity and they demonstrate this through their active interest and participation in the process.

“One mother wrote an email to her child’s school where she mentioned that participation in our project helped her feel in charge of planning her child’s developmental goals. She told the school that she’d appreciate being given the same level of control when it comes to her child’s school program. She referred to building her child’s social skills as a core goal identified through our process and asked the school to include this in their Individual Educational Program. This is evidence of family leadership capacity building.” Annick Janson

Here’s a video of another mother explaining why she appreciates this planning process and what she likes about Book Creator:

Families can take this learning into the future

Learning to use Book Creator to record their child’s progress stretches the impact of the intervention beyond the time boundaries of our program and increases sustainability of care. This is why we refer to the Now and Next Program as an intentional learning opportunity for families as it involves their active participation so that families learn by doing.

Working with Book Creator made new team conversations possible

We found ourselves engaging in discussions that were new for us and promoted reflection on the way we work with families. We have discussed new work strategies, such as how to cultivate our ‘radar’ when parents share a story with us to help them record these kernels of change.

“Looking back at my client’s book I found it is interesting to note that at this stage the entries are a combination of ‘progress’ type note, reminders of things to look into, goals that the client has identified and how we, being me and the client, are progressing on finding information and implementing it to next steps towards the goal … One thing that came up in a session, brought to my attention by the client was that entries could be dated, in order to see the progression of information collection which we incorporated as an overall practice.”

We asked our team: What’s a good ebook?

“A good ebook is filled by the parents themselves”

We found that we were teaching families how to insert the media and in doing so, have actively given agency to parents. The goal is for families to do it themselves. When they cannot do this, we model this for them or do it together so that creating the record is a joint process.

“We are recording what is happening”

Book Creator enables us to record progress using a variety of inputs (photos, videos, voice of family…) which document what is happening for the family. If they themselves are involved in this process, we have their direct point of view and not ours, as would happen in progress notes. The notes which parents record also provide research data and the evidence of change that matters for families.

“We help families capture a vision that could be lost”

We help families include photos they have taken on their phone to capture moments of achievement in sessions and record visions for the future. All of these strategies give families a boost in energy which helps them to believe that things could be different for their child and family. Several parents commented that putting their goals down in the ebook in photos and words made these goals seem more real and attainable.

“When a mother shared a dream of future home ownership with staff, she was hesitant to declare it as a goal as it was unrelated to her original goals. She had however, actually taken a photo of a neighboring house she loved, so staff encouraged her to paste that photo in a page of the ebook.

This helped her start considering what steps could be taken to start progressing towards this new goal. The amount of effort the mother placed into the ebook and the enthusiastic attitude she shared with all of us was really inspiring. She didn’t seem to believe that there were limits because the goals were observable and there was a plan on how to achieve each of them.”

Observing how another mother moved from hesitantly formulating goals to feeling confident that her goals were achievable, an intern in our organization noted:

“As a team we are constantly surprised by the power of this mechanism in different situations.”

Co-creating the book title is part of setting this positive vision and we assist families to think of a title, which focuses on the child’s strengths or interests for example ‘Sarah the Olympic gymnast!’ We are in the process of working out how to harness this powerful mechanism to continue to help families to see a positive future for their child and family.

Families have different technology skills

While most families are excited by and interested in the use of Book Creator to record their child’s progress, they vary in their level of technology skills. Our aim is for families to do as much as they can themselves, but some families are just beginning to use this technology. So we support families to participate and learn in a practical way, sometimes using small steps such as modelling how to upload a photo or recording their voice in a message.

“We can promote their participation in small ways: ask parents for photos that they can share here and now (no homework), ask them to take a photo on their phone or if they missed a chance to take a photo in real time – then take a video of a parent remembering a good event or behaviour.”

How did Book Creator help us achieve our aims in ways that other tools could not?

Book-Creator helps us improve the way we implement family-centered practice

“The area of family work has been practiced for many years, and the way in which we do so needs to change with the changing sector in which we work. As we aim to operate using family-centered practice, it is of utmost importance that we keep this in mind when we record the work that we do with families. Traditionally, we would meet with a parent or family, talk about goals and issues then leave the family, head back to the office and record what was discussed in lengthy progress notes.

Book Creator allows us to work in a more dynamic way and truly capture that family-centered practice that we aim for. Book Creator allows us, as professionals, in conjunction with a parent/ family, to record and follow progress notes together, in session. The parent/ family can have noted in THEIR file/notes what they want recorded, resulting in us being closer to reaching our aim of the true essence of our work”.

Parents are able to capture moments that staff cannot

“When relating and communicating with their children, parents experience a lot of precious moments, some high and some low. These moments may be very important, however, if not recorded they can be lost forever. Book Creator can help families record these moments, the events, and the feelings associated with them. Later, parents and children can recall the thoughts and feelings recorded in their ebook as valuable experiences.

They can reflect on the experiences and use them to promote learning for their child. For example the goal for a child might be to complete an activity such as brushing teeth on their own. In such moments the parent may take a photograph of the child brushing his/her teeth and put it in their ebook, or they can record when the event occurred as an important moment in the child development”.

Pages of the book can be shared to engage other family members

“The immediacy of the ebook is very valuable for clients as it is possible for the parent who is not in the session or at home to be included through the captured moments in real time by sharing a new page via email or by being able to review the ebook at night.

As the possibility is there for various forms of recording events such as photos, audio, video and text, all in one easy to use place, and as we all become more proficient and familiar with having the iPad at hand, a comprehensive record can be developed and shared across many disciplines and situations. For instance some families are planning to share their ebooks with their children’s schools – to rally educators to the goals uncovered through the Now and Next program”.

We used Book Creator as a presentation tool

We presented our work at a recent sector conference – the 2015 NDIS New World Conference in Brisbane, Australia. Our presentation was streamed in real time and is available at mediasite.webcastcloud.com.au (or click on the image below).

The presentation starts at 28:55.

Future plans we have for using Book Creator

There have already been multiple opportunities to use Book Creator in other ways that those imagined at first!

• Create new resources for the organisation: Shortly after starting our project, our team put together sets of resources for the whole organization using Book Creator. We realized that some of the resources could be re-purposed and updated to share with other families – staff save time and resources improve with time.
• Team learning: Our team is starting to use Book Creator to present at our internal team meetings. This is a great indication of how we can work to embed this technology into our practice.

If you’d like more information about the project, please contact Sylvana Mahmic, [email protected] or Dr. Annick Janson [email protected].