Reinventing the delivery of health and rehabilitation information

Bernadette Cassidy, PhD.

New Zealand Spinal Trust

Correspondence: Email: Bernadette.Cassidy@nzspinaltrust.org.nz

Received: 23/3/2021; Revised: 12/5/21; Accepted: 16/5/2021

Key words: spinal cord injury, rehabilitation, library, information.

[citation: Cassidy, Bernadette (2021). Reinventing the delivery of health and rehabilitation information. DHH, 8(2): http://www.journalofhealth.co.nz/?page_id=2499].

 Abstract

Unlike conventional medical/hospital libraries the former Allan Bean Centre (ABC) provides a client centred, visionary approach towards information provision for people with spinal cord impairment (SCI). The library’s main aim is to foster the wellbeing and recovery of patients by offering a range of resources and services, e.g. education and training. In 2015, the ABC was demolished due to damage after the 2011 Christchurch earthquake. The loss of the building has had a significant impact on patients, families/whānau and people with disabilities in the Christchurch community. With no funds to replace the building, a main first challenge was how to continue with essential service provision. Whilst waiting for a solution to the building problem there were other challenges too, the latest being Covid-19. The ABC Library had to reinvent itself through creative thinking outside the box and in developing a number of initiatives. In 2021, the library is still without a building but there is the possibility of a new building becoming available in the future. This paper will report on the initiatives employed and how collaboration with a number of agencies was crucial e.g., the development of a new online information service.

Introduction

The New Zealand Spinal Trust (NZST) a national charitable organisation was founded in 1994 by the late Professor Alan Clarke to address the unmet needs of rehabilitation, information, research, advocacy and support for people with SCI (and other conditions) throughout New Zealand (Cassidy et al. 2004).

The NZST provides three key services: a Vocational Rehabilitation Service; Family/Whānau and Peer Support Service and the newly named Resource Centre (formerly the Allan Bean Centre Library).

The philosophy of the NZST is that the rehabilitation process is essentially educational not medical and follows the Independent Living (IL) model of rehabilitation (Cassidy et al. 2004; Cassidy 2018). This model encourages the patients to contribute and direct the process of recovery with a goal to re-entering and maximizing their potential within the general community. This is a different and unique approach in New Zealand allowing patients’ needs to be the driving force behind the rehabilitation process. The recovering person needs access to a range of resources whether it is information about their injury/illness, pain management, retraining, learning new skills and/or returning to work, study or gaining new employment.

The Resource Centre provides a wide range of resources and services with a collection of over 1200 books, journals, magazines, and a range of digital media. Computer skills training and patient education are key components of the library service and a range of publications have also been produced.

The ABC was housed in a purpose-designed building which helped create a friendly and welcoming atmosphere. The caring and welcoming atmosphere was referred to regularly by patients, families and numerous visitors and was integral to the development of the NZST. The success of the ABC is demonstrated by user statistics; by 2011, there were on average 8000 users/clients visiting the library annually, and 700 people had access to free computer skills training (Cassidy et al. 2004).

Christchurch earthquakes

Following the earthquake in 2011, funding was made available by Canterbury District Health Board (CDHB) to strengthen the building against future earthquakes. Unfortunately, in July 2014, the CEO of the NZST received a phone call advising him and the staff that the building had been assessed as unsafe and they had 15 minutes to vacate the building.

Notwithstanding the impact of such a sudden and traumatic shock, the question on everyone’s mind was ‘what about the clients and how best can we support them without a physical space? What new initiatives could be explored for the benefit of patients, whānau and staff? Could this be an opportunity to increase the visibility and reach of the great services we provide?

This was more complex than it sounds and involved locating space for the storage of resources, furniture and equipment, as well as the logistics of maintaining some form of service, how to stay relevant, and keep our identity as an organisation supporting people with spinal cord impairment through their rehabilitation.

We spent the next five months working from home via the NZST’s remote server. During this period there was only a basic library service available. The Allan Bean Centre was a social hub that many people (including patients/families, hospital staff and clients in the community) missed. Patients, families and staff commented that they had lost a lifeline and a social connection.

Clearly, the demolition of the ABC building without the allocation of a new/alternate space to relocate to seemed to be the end of the library’s most used services. Immediate challenges were to manage the traumatic impact on staff and to meet the impact that such a massive sudden change had incurred on library services, clients and staff.

Challenges

As the library building was now closed, it was imperative that alternative space was found to maintain the service. At face value, the options available were as follows: to rebuild, to relocate, or to reinvent. Unfortunately, the NZST did not have the funds necessary to rebuild, the building was under-insured, and the CDHB deemed that the Allan Bean Centre was uneconomic to repair. Given that Burwood hospital was going through phase 3 of its rebuild and various hospital services were operating out of temporary locations – space was at a premium. Relocating was also not an option as the ABC needed to be on the Burwood hospital campus. Even if these two options were a possibility, they were long-term solutions and would not have responded to the immediate needs of the clients and the library.

A research approach

Giving up simply was not an option.

It was decided to explore the traumatic outcome leading to an even more trauma and uncertainty circumstances and finding a solution as a “soft” research project. The immediate problems were, firstly, a social hub had been lost where patients, whānau and staff would meet and discuss their needs, secondly, access to resources was no longer readily available, thirdly, access to information had been lost (computers, internet, journals and periodicals, etc), fourthly, clients no longer had the opportunity to have computer skills training.  these services and resources were developed and made available over a decade or so and could not be provided overnight. So the first step was to adopt a pragmatic and practical approach by lowering expectations and prioritising objectives.

 Aim and objectives

The aim was to reach and support as many users as possible.

Objectives included

• Provide access to the library catalogue
• make the library’s collections available
• provide reading material
• make training courses available
• source and apply for resources to fund replacement services
• provide other options

Methods

Information is the major currency within the health service. At this stage, the ABC’s user statistics provided strong evidence that the ABC is needed and valued for a successful rehabilitation process. It was therefore important to maintain some measure of how the lack of a library had impacted on the clients. Now there was a vacuum which led to user frustration.

Burwood Hospital patients, families/whanau and staff were without a library from July to early December 2014. Numerous conversations were had with senior CDHB managers to look for solutions. This proved difficult because the new hospital building was not opening until August 2016, and priority was given to patient areas and clinical and nursing staff. Competition was stiff, and the library was at the bottom of the priority list. It was a very stressful time. Under these stressful circumstances the approach must surely be based on lessons learnt; to see how others dealt with a similar situation; and how successful the outcome; and how we could learn from each other. So, a number of meetings were held with senior managers at Christchurch City Libraries who had themselves experienced earthquake related problems but managed to keep their libraries running. Their knowledge and support was invaluable and reassuring during what was a very difficult time.

Results

The aim was defined broadly to remove the limiting and negative impact of not only the loss of a building but a situation which can best be described as homelessness. The immediate logical response was that if users cannot come to the library, then the library will go to them.

While hospital staff had access to the Canterbury Medical Library via the CDHB intranet and internet from their own offices, it was a different experience for the patients and their families. So, a request procedure was developed whereby library staff would liaise with nursing staff and patients to deliver their information needs.

Many users had expressed the library being a social, friendly and family hub. So, this idea was utilised to provide and recreate the feeling of a social hub.

Recreating a social hub

Prior to the demolition of the ABC in August 2015, I had stored in a container on site the library’s collections, bookshelves, desks and furniture. A mini library was set up in the spinal unit lounge. From the container two bookshelves were set up and stocked with a selection of resources on spinal cord injury, brain injury, journals, magazines, DVDs, and music CDs. In addition laptops were set up on adjustable tables for people in wheelchairs to access. Internet access was made available through the CDHB’s public Wi-Fi system. This meant we were able to provide computer training for patients, families/whānau. It was comforting to receive positive feedback about having a mini library in the lounge. Patients and especially their families appreciated having the library close at hand. We noticed that relatives of patients felt comfortable in the space and would often stop and share confidences with the staff member on duty.

With the mini library we were able to provide most of the pre-earthquake services albeit in a reduced capacity. However, users were quite happy to book and wait for a service. Due to ongoing earthquake repairs, the spinal unit relocated to another ward while repairs and refurbishments were being undertaken. This was an unexpected setback, but only a setback. This meant that the mini library would need to find a new home.

Alternative Space

In August 2016, the ABC Library relocated to a small room in a temporary portacom. This became a huge challenge as the space was much too small. In addition, there were physical barriers in accessing the portacom so patients and whānau stopped coming. Due to the small space the capacity to provide computer training for clients was significantly reduced. Books, journals and magazines were condensed while the rest of the library’s collections were still housed in a separate container some distance away from the portacom.  Due to these limitations, the library service usage decreased and lost its identity.

 Initiatives

In 2019, the New Zealand Spinal Trust rebranded in order to raise its profile and promote awareness of its services. As a result, a number of initiatives were developed.

1. Collaborative initiative with Christchurch Library to develop an e-resources project to hospital patients – the ‘Words to Wards’ project to make books and magazines available on patients’ tablets and mobiles
2. New NZST website created to focus on our programmes and services, the site went live in May 2020 nzspinaltrust.org.nz
3. B Information Service: we created a new online support portal where people can post and ask questions on anything spinal cord impairment related https://www.nzspinaltrust.org.nz/i-need-information/ask-dr-b/
4. NZST Backpacks: Each new patient in both the Burwood and Auckland spinal units receive a free backpack. The backpack contains information about the NZST and the services and support we offer. Included in the backpacks are a drink bottle, notebook, free gifts etc.
5. Provision of tablets and iPads for patients to access email accounts, use Zoom, social media and receive computer training.

New and Current Space

Since August 2020, the library now renamed the resource centre moved to a room in an old hospital corridor – residing along with the Vocational Rehabilitation and the Peer and Whānau services. Funding was sourced and the room was repainted, a wheelchair friendly floor installed along with new electric desks and custom designed shelving.

The Resource centre is available to all patients, families/ whānau, staff. Available are laptops, free wifi, printing, resources on disability and rehabilitation, computer training sessions and help with researching articles and finding information on a range of topics.

Conclusion

Despite the challenges post earthquakes, the ABC library (since renamed NZST Resource Centre) continues to provide resources, training and information to patients, whānau, and caregivers. As we wait for a new building, we continue to provide education and training to people with spinal cord impairment and brain injury and stroke utilising experienced and compassionate tutors in a safe and caring environment.

 However, we also see this as an opportunity to build and design an even better resource centre and build on the culture of the provision of specialist rehabilitation information to reflect the needs of the membership of the NZST. We will recreate a peaceful space where patients can escape the confines of the hospital setting in a safe and supported environment, where they can explore information about their rehabilitation through the support of a specialist librarian, learn computing skills, keep in touch with the outside world through the provision of free Wi-Fi, or just relax in a welcoming environment.

There is a great deal of willingness to collaborate and co-operate by all stakeholders, e.g Canterbury District Health Board, Christchurch City Libraries and to use this willingness in a constructive way. We are looking forward to confirmation in the near future for a dedicated space and what the new library will look like.

References

Cassidy, B., Clarke, A., & Shahtahmasebi, S. (2004) “Quality of life: Information and Learning Resources in Supporting People with Severe Life-Changing Injuries to Return to Independence.” TheScientificWorldJOURNAL, 4, 536-543

Cassidy, Bernadette. (2018). The art of recovery. Dynamics of Human Health (DHH), 5(3): http://www.journalofhealth.co.nz/?page_id=1629