Anne Hawker, Principal Disability Adviser at Ministry of Social Development spoke as part of a panel discussion at the ASSBI/NZRA Conference in May 2019. Anne was asked to reflect on the future of rehabilitation within New Zealand, with an emphasis on policy, practice and politics. A number of people have indicated that they were keen to access her notes ... so Anne has very kindly allowed us to publish them.
A couple of definitions:
The World Health Organisation (WHO) Rehabilitation Strategy defines rehabilitation as...
a set of interventions designed to optimise functioning and reduce disability in individuals with health conditions in interaction with their environment.
In Article 26, the United Nations Convention of the Rights of Persons with Disabilities (UNCRPD) definition of habilitation and rehabilitation states,
parties shall take effective and appropriate measures including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life.
Why the difference?
One of the reasons is the significant role played by disabled people and their organisations within the development of the Convention. As article 4.3 of the UNCRPD says
In the development and implementation of legislation and policies to implement the present Convention, and in other decision- making processes concerning issues relating to persons with disabilities, States parties shall closely consult with and actively involve person with disabilities, including children with disabilities through their representative organisations.
The need to genuinely dialogue with disabled people
When the debate was first raised around functional capacity, disabled people pushed against the efforts to make functional gains where they were not adequately involved in the decision-making process. This is why the schema of the WHO International Classification Functioning, Disability and Health (ICF) is so important to me - it adds that important dimension of participation. It is why I celebrate the call from Dr Alarcos Cieza, who oversees WHO’s work on vision, hearing, rehabilitation and disability, states on page 25 of the WHO strategy,
rehabilitation, above all, is a person-centred strategy to address an individual needs which are beyond specific organisations, beyond specialisations and beyond specific groups. The spirit of collaboration that we hear in the statements from different stakeholders needs to be maintained in our Call for Action.
I was interested in the call for action that they talk about and health having the stewardship role in strengthening rehabilitation services.
Stewardship is now generally recognised as the acceptance or assignment of responsibility to shepherd and safeguard the valuables of others.
I believe that stewardship is an interesting term, specifically due to:
The need to ensure that rehabilitation is included in NZ health strategy & delivery
It was interesting the 'New Zealand Health Strategy 2016-2026 – Future Direction' does not mention rehabilitation and yet WHO has called for the
full spectrum of essential, quality health services from health promotion, prevention, treatment, rehabilitation and palliative care.
When I raised questions [about rehabilitation being missed from the NZ Health Strategy,] I’m looked at blankly. As Jan Monsbakken, Past President of Rehabilitation International, said,
very few people really know about rehabilitation and it is our obligation to make sure that everyone is aware of the importance.”
The UN's Sustainable Development Goals (SDG) emphasise the importance of ensuring the needs of disabled people are met.
Rehabilitation is crucial. It’s a life changer, and it needs to be beefed up all over the world… Habilitation and Rehabilitation is crucial if we really want to make sure that no one is left behind.
How do we know that no one will be left behind – what information do we capture? How do we measure success - is it when people are able to do their activities of daily living, or when they are able to participate in the community in activities of their choosing?
Suggestions for the future....
I agree with the statement 'efficient rehabilitation requires proper planning.' To do this we need health information systems to collect, process and manage relevant information. We need a broader and integrated information approach.
Change requires more than collaboration. It involves genuine dialogue with disabled people and their organisations. Habilitation and rehabilitation have lost respect in the disability sector, which I think is sad. Why? People still remember it being about “fixing people, making them normal.”
People need to be involved in the decisions that impact on their lives. This must include thinking about how services address:
As NZRA's only life-time member, we are grateful to Anne for these reflections and for the challenges that they present. We want to thank Anne for her ongoing commitment to ensuring that genuine dialogue occurs, and that disabled people are offered services that promote their ability to meaningfully and fully participate in the communities in which they live.
In July 2019, Burwood Academy of Independent Living (BAIL) was delighted to host A/Prof William Levack for the day.
William provided a workshop for researchers about 'Theory building in qualitative research' and then presented to the wider peer group on 'Making use of Cochrane evidence'.
The rehabilitation community is a major stakeholder in the work of Cochrane (formerly the Cochrane Collaboration). One in every 11 reviews and protocols published by Cochrane are on interventions provided by rehabilitation professionals. In 2016, Cochrane Rehabilitation was founded as a Field to act as a bridge between Cochrane and the health-related rehabilitation community worldwide. In part, this work has involved creating resources for rehabilitation providers, policy makers, and service users - ensuring that evidence within the Cochrane Library is relevant and useful to the work and lives of a range of rehabilitation stakeholders.
William's presentation was designed for health professionals to learn more about how to read and interpret knowledge from systematic reviews, with a particular focus on how to read Cochrane reviews on rehabilitation topics. It was particularly relevant for doctors, nurses, and allied health professionals.
Cochrane systematic reviews can be accessed freely from the Ministry of Health website.
Both sessions were well received. Your can view the peer group presentation and see the presentation slides HERE.
Contributed by Rachelle Martin, PhD, Burwood Academy of Independent Living
I sometimes think, just like the Velveteen Rabbit who didn’t become REAL until it was loved and used, research findings don’t become REAL until they are used and ‘loved’ into meaning:
To take creative license ….
REAL … is a thing that happens. It doesn’t happen all at once. It takes a long time.
That’s why it doesn’t happen for [every bit of research] – it might not happen for knowledge that might break easily, or have sharp edges or have to be carefully kept.
Generally by the time [research] is REAL, most of its shine has been rubbed off, its pontificating has dropped out, and it might even look a bit shabby.
But these things don’t matter at all, because once it is REAL, it can be used and useful and loved by people who actually have to put it into practice.
For my PhD, I evaluated whether therapeutic horse riding (as delivered by the NZ Riding for the Disabled Association; NZRDA) optimised health outcomes for children and adolescents experiencing disability.
What did I do to share the results of the research?
All of these different avenues for dissemination were directed at making sure that the PhD research findings related to what is already happening within the 50-odd NZRDA groups across NZ, while also extending and challenging the way things are done.
But, in my opinion, the most helpful to make the findings REAL were the workshops that turned into a giant discussion. In this forum, coaches and volunteers had the opportunity to talk together about how the findings related to specific riders they were working with, how they could start to think about the policy implications, or how they could provide training so that services could be delivered consistently with the research recommendations.
And this is true for all organisations that I have been involved with. It is only when the new knowledge gets applied to a specific context that it becomes relevant. And it is only when it is applied and used again and again that it becomes REAL.
To help with this process of ‘research being used’ within the NZRDA, I have worked with a graphic designer to develop some simplified (i.e., more simple than a thesis or a journal article) resources. The infographic and the comic (for riders) were created make it easier for people to share ideas, to talk to riders and their families about the benefits of riding, and to feel more comfortable using the research results in funding applications and training materials. They can be put on websites and Facebook pages, they can be handed out to riders, they can be hung on arena walls, and they can be included in training materials.
I am committed to not leaving the results of research in the journal, or even in a blog. I am committed to playing my part in helping clinicians to make research REAL.
Let’s all find ways to ensure new knowledge is used and useful and loved.
The most recent edition of the NZ Rehabilitation Review can be viewed HERE.
This issue focuses on six of the presentations from the recent ASSBI/NZRA Inaugural Trans-Tasman conference.
We encourage you to check it out, get in the know and join the conversations.
In May, we celebrated some excellent outcomes for rehabilitation-related research funding in NZ. Dr Fiona Graham was one of the successful researchers, receiving support from HRC’s Emerging Researcher First Grant fund.
Fiona is an occupational therapist, currently working as a Senior Lecturer in the Rehabilitation Teaching & Research Unit (RTRU) in the Department of Medicine, Wellington. She was granted $233,618 to trial an Occupational Performance Coaching (OPC) intervention. As part of her PhD, Fiona developed the family-centred OPC approach - empowering caregivers to support their children's goal achievement in the participation domain of the ICF. This research will evaluate the effectiveness of this intervention in clinical settings.
The research aims to determine if children with neurodisability and their caregivers experience improved health and wellbeing following OPC compared to usual care when delivered in existing service delivery contexts.
The innovatively-designed study will be conducted using a single-blind, 2-arm parallel group, cluster RCT - with clustering happening at the level of the therapist. Post-intervention interviews will also examine caregivers’ experience of OPC in relation to cultural values and expectations.
Fiona states that it is often difficult for rehabilitation interventions to secure research funding, as rehabilitation deals in the “messy reality of people’s daily life where there is lots of variation in how people live”. This means that it is challenging to meet the rigorous design requirements of research funders like the HRC. “This time we pulled it off and HRC have recognised that research of rehabilitation interventions can’t follow a sample design formula,” Dr Graham says.
Participants will be child-caregiver dyads (cases), with the inclusion criteria that children are aged 2 to 18 years and have a primary diagnosis of neurodisability for which caregivers have sought rehabilitation. Enlisted therapists will be randomised to OPC training (intervention) or usual care (control) groups. The primary outcome, children’s social participation (Canadian Occupational Performance Measure; COPM) will determine intervention effectiveness and inform the economic analysis.
Fiona’s research has the potential to improve access and equity in rehabilitation for children experiencing neurodisability in NZ. There has also been considerable international interest in OPC, with Fiona being invited to present two international and one national keynote presentations, and 20 invited workshops.
“I’m also pretty stoked for the families of children with disabilities. They are a small health consumer group and there are no magic answers for the challenges they face. The fact the HRC has awarded this grant to explore ways to improve the quality of their lives and to help them live well despite disability is very exciting.”
Contact Fiona on firstname.lastname@example.org if you have any questions about this research.
Contributed by Kristin Gozdzikowska, Ph.D., CCC-SLP, Laura Fergusson Trust (Canterbury)
From 2014 to 2019, the number of people who own a smartphone worldwide more than doubled, nearing 3 billion individuals. Now, more than ever, people of all ages and backgrounds are connected, controlling an increasingly customised environment for on-demand access to media, music, banking, fitness tracking, calendars, social media, maps – the list goes on and on. Why then, does clinical practice at times feel so far removed from this rapidly advancing technological sector?
It has been said that it takes an average of 17 years for new evidence-based findings to reach clinical practice (Balas & Boren, 2000). However, with dropping prices and increasing access, technology is becoming an integral part of clinical care. Rather than expensive equipment, a biofeedback device can be downloaded on a free app. A wearable sensor patch can monitor blood sugar levels, needle-free. A heart-rate rhythm monitor can help improve awareness of emotional state. Simple alarms and wearable prompts can serve as reminders everyday tasks from medications to grocery lists. What’s more, the use of a smart phone can be increasingly socially acceptable for individuals trying to incorporate and generalise strategies in a community setting without drawing unwanted attention to themselves.
By harnessing available, low-cost technologies, unexpected changes can be made as well. For example, Jo Fox, a physiotherapist at Laura Fergusson Trust, is investigating use of a Fit Bit wearable to increase a client’s number of steps. Not only has the client increased physical activity, but early observations revealed unexpected improvements in response to phone calls and texts due to the tactile vibratory feedback when receiving a message. Now, this client has newfound capacity of self-management – no small feat in the world of traumatic brain injury recovery.
It is important to be mindful, however, that much of technology is designed far from the clinical realm, which may exacerbate the divide between research, technology and clinical practice. This reiterates the importance of including end-users in co-design throughout development, which impacts the robustness of experimental solutions and end-user involvement in emerging technologies. This partly inspired the Laura Fergusson Trust, in collaboration with Marcus King (Callaghan Innovation), Jo Nunnerley (University of Otago/BAIL) and Riley Stockwell & Nadia Thorne (Cerebral Fix), to co-design and test a virtual reality (VR) rehabilitation solution for individuals following TBI. VR has potential advantages as real-world stressors can be simulated and systematically introduced. Focus groups were held with people with lived experience of brain injury and clinicians to introduce the concept of VR and discussing possible applications. These groups fed back that a café setting would be most beneficial. In the newly developed game, users complete functional tasks in an increasingly loud and distracting café environment to increase their awareness of effects of cognitive fatigue after brain injury. Not only was VR well tolerated, after trying the co-designed prototype, one individual with lived experience of TBI stated,
“You put us in the exact right environment, this is exactly what happens when we’re out.”
Future research is currently underway to trial clinical implementation of this VR rehabilitation tool. In the meantime, it is clear this study provides important insights on the value of patient perspectives when developing technology for research and clinical practice. By partnering with individuals with lived experience and interdisciplinary teams, we can further harness the rapidly growing benefits of technology into health.
For more information contact Kristin via: email@example.com
Fiona Kumfor (The University of Sydney) won the NZRA Best Poster Presentation award for her poster presentation entitled: ‘Prevalence and neurocognitive basis of delusions in dementia’
Fiona aimed to examine the prevalence, clinical and cognitive profile of delusions in a large, diverse cohort of dementia patients. Delusions and abnormal belief formation have been reported in some people with dementia, however, the mechanisms causing their emergence are poorly understood.
In the cohort, 48/487 patients (9.9%) had delusions, with the highest prevalence observed in behavioural variant frontotemporal dementia (18.4%) and Alzheimer’s disease (11.8%). A diagnosis of behavioural variant frontotemporal dementia was strongly associated with the presence of delusions (odds ratio = 3.3; p<.001). Comparisons between 30 patients with delusions and 30 matched patients without delusions revealed worse performance on the Addenbrooke’s Cognitive Examination (p=.035), Rey Complex Figure Recall (p=.006), and word repetition (p=.001) in patients with delusions. Notably, the delusions group also had greater impairments in everyday skills (p=.004), stereotypical behaviours (p=.031), sleep disturbances (p=.003), memory problems (p=.012) and mood (p=.017).
Results from the study reveal that delusions are most common in behavioural variant frontotemporal dementia and Alzheimer’s disease, and relatively rare in other syndromes. Both the cognitive and clinical profile of patients with delusions differs, and suggest possible mechanisms for the emergence of delusions in these syndromes. Analyses are underway to examine the neural correlates underpinning delusions in dementia.
Click on the image of the poster to see a full-size version.
Correspondence: Fiona Kumfor; firstname.lastname@example.org
Jesse Shapiro won the NZRA Best Student Presentation award for his oral presentation entitled: ‘No diffusion imaging correlate of paediatric post-concussion syndrome: a TBSS study’
Jesse works with the Murdoch Children’s Research Institute and School of Psychological Sciences, University of Melbourne, Melbourne, Australia.
The analysis formed part of the Take CARe study. Forty-three children were recruited from the emergency department of the Royal Children’s Hospital and underwent magnetic resonance imaging and cognitive screening two weeks post-concussion. The Parent PCSI was used to dichotomise participants into “normal” and “delayed” recovery groups. Analysis of TBSS diffusion metrics: fractional anisotropy (FA), mean diffusivity (MD), axial diffusivity (AD), and radial diffusivity (RD) was completed using nonparametric permutation-based analysis with threshold free cluster enhancement.
No significant difference was found between the normal recovery and delayed recovery groups across all diffusion metrics (p < .05). No significant difference was found on tests of cognition between the normal recovery and delayed recovery groups (p < .05). Two possible explanations for the findings are put forward: that any changes to white matter are too small to be seen by this study, or, the cause of PCS is not structural in nature.
Jesse did a great job of presenting this work in a way that was understandable and engaging. He also addressed issues within the current evidence-base, and specific study design strategies he used to overcome the limitations.
Correspondence: Jesse Shapiro; email@example.com
Felicity Bright was one of two recipients of the inaugural NZRA Emerging Rehabilitation Research Leader award offered in 2017. This award is offered on a biennial basis with a focus on growing rehabilitation research capability in New Zealand. It recognises NZRA objectives to provide leadership, advocate for excellence, and promote interest in and support opportunities for research in rehabilitation in New Zealand. The award makes it possible for an early career researcher to appoint a summer student to undertake seeding work which helps them to advance their rehabilitation research programme.
Felicity used her award to appoint a summer student to undertake a literature review using qualitative meta-synthesis methodology. The review explored how therapeutic relationships and interpersonal communication are perceived and experienced by people experiencing communication disability in stroke rehabilitation.
When people enter rehabilitation with a communication disability after stroke, they often come from a place of vulnerability. Their life and the way they communicate and relate with others has changed significantly. Their sense of self can be altered, partly because rehabilitation providers may not communicate and relate with them in a way which recognises their sense of personhood – who they were and who they are. This can see the patient isolated, feeling invalidated. Our review indicated that the relationships between the person with stroke and their rehabilitation providers were foundational for rehabilitation and developed through the communication between the two parties. Communication did not always need to be successful: what seemed critical was that providers were seen to try to communicate and connect with the patient. People with stroke described a process of reading their provider, evaluating whether they are interested in them as an individual, whether they value the person’s perspective, recognising them as a person who has a contribution to make. When patients had a sense of being validated and respected, it impacted on many things including their confidence and sense of trust in the provider, their engagement in rehabilitation and their hope for the future.
This metasynthesis will inform Felicity's on-going research programme, which centres on relationships and communication in rehabilitation, in particular, projects working with rehabilitation providers, supporting them to embed relational practices in rehabilitation.
Earlier this month, we held a hugely successful national rehabilitation conference with our partners from the Australasian Society for the Study of Brain Impairment. We used this conference as an opportunity to run a kanohi ki te kanohi AGM for 2019, plus to host a breakfast discussion session on the future and direction of the NZRA. The minutes to the AGM are now up on our website. Of note, Nicola Kayes stepped down as president of the NZRA as she had reach the end of her term. A huge thank you to A/Prof Kayes for her enormous contribution to the NZRA, including the coordination of several conferences and for her networking with key stakeholders in Aotearoa. Also standing down, having reached the end of their terms as executive members, were Kath McPerson, Will Taylor, and Max Cavit. Thank you to Kath, Will, and Max, for this long term contribution to the NZRA.
We have several new members joining the NZRA: Dr Leanne Parker (a rehabilitation physician from Southern Cross Health), Annie Jones (Clinical Partner at ACC), and Felicity Bright (a speech language therapist from AUT University). I will be returning to the NZRA Executive after a four year departure, and have accepted the role of President for the next term. Felicity has accepted the role of Secretary for the organisation as well. Staying on the NZRA Executive are: Debbie Snell (as Treasurer), Rachelle Martin, and Peter Larmer.
You can also now check out the profiles of all of the NZRA Exec members on our website.
The NZRA Exec is now meeting once a month. This year, we aim to complete some strategic development work to provide our organisation with a clearer sense of purpose and direction. We are interested in our opportunities to grow and contribute more to the NZ rehabilitation community. We are also interested in increasing diversity within our organisation and its leadership. If you would like to get more involved yourself, please get in touch!
William Levack is an Associate Professor of Rehabilitation at the Rehabilitation Teaching & Research Unit, University of Otago, Wellington, New Zealand. Twitter: @DrLevack
© 2015 New Zealand Rehabilitation Association, Inc.