Contributed by Rachelle Martin, PhD, Burwood Academy of Independent Living

I first met Jacinta when attending an ASSBI conference in Perth in 2015 as a nervous Masters student with a strong dose of the infamous imposter syndrome. I met her again in 2019 at the ASSBI/NZRA conference in Wellington. Amazingly, she remembered what I had studied and what I was planning to do for my PhD.    This is one of the many things I appreciate about her and something that comes through in her research - Jacinta is interested in people. She listens well. She is passionate about supporting others to live well. She also has great hair! 

Jacinta has been involved in the production of a huge number of publications, chapters and reports.  What stands out in her publication list is the diversity of projects, students and colleagues, all caring about making a difference to how people communicate who they are and what their needs and desires are.

Let me share one recent paper, authored with Kate D'Kruz and Tanya Serry,  with you...

Personal narrative approaches in rehabilitation following traumatic brain injury: A synthesis of qualitative research

Head to ResearchGate to request a full copy of this publication if you would like one.

Sharing stories with others is an everyday human experience. Research evidence suggests that through narrative storytelling, we process and make sense of ourselves, creating a coherent life-narrative.

The review aimed to identify and synthesise published evidence on the use of personal narrative approaches in rehabilitation following TBI.

Findings from 12 qualitative research articles were synthesised. Written methods of narrative approaches were most evident, with only three articles utilising spoken methods, and visual methods used in two articles.

One overall theme of building a strengths-based identity was developed, with four sub-themes:

1.  expressing and communicating to others
2. feeling validated by the act of someone listening
3. reflecting and learning about oneself
4. being productive. 

The paper cites a poem from case study participant “Ned” (Pinhasi-Vittorio, 2007) alluding to his experience of growth from participation in writing.

When I write, I feel
When I feel I cry
Others may pass me by
but still I write to try
to figure out the past, the present + analyse the future,
of what may be to come
because I …
am not done
but am just starting
this rhyme
This flow
This dose do
with word these verbs just won’t slow
+will be with me while I grow (p. 121)

To quote a section from the discussion:

Successful reintegration into the community is a complex process of adjustment, coping and adaptation for both the survivors of TBI and their support network. Developing a positive identity focussed on strengths rather than impairments is increasingly understood as central to this process and reflected in holistic and multi-disciplinary approaches to TBI rehabilitation. Consistent with this strengths based approach, narrative, when understood from a constructivist perspective, presents a view on life after TBI that offers hope and a belief in the potential for change. Through story sharing, survivors of TBI are afforded a space to express and communicate their experiences and feelings, thus constructing their own personal story.

A takeaway message: seek opportunities for survivors of TBI to share their stories.

Another takeaway message: come and hear Jacinta speak for yourself!

REGISTER NOW FOR CHRISTCHURCH - 13 Feb 2020

REGISTER NOW FOR AUCKLAND - 14 Feb 2020

The NZRA is pleased to announce that Dr Rachelle Martin has been awarded the NZRA Emerging Rehabilitation Researcher 2019/20 grant. This grant is for $6,000.

Rachelle aims to use to funding to explore the perceived health optimisation priorities of people living with the long-term experience of disability. She is keen to understand if there are differences for those with child- versus adult-onset impairments, or those with predominantly neurological versus musculoskeletal impairments.

Rehabilitation funding and provision tends to be primarily focused on impairment onset (e.g., when a person is first diagnosed, or first acquire their health condition). However, since health can be defined as an emergent set of capacities that develop over a lifetime thereby enabling people to interact successfully with their physical psychological, and social environments, support may be required at different times in a persons life, as their environmental context changes, or within the trajectory of their health condition.

Currently, there is little information available exploring the peoples own perceptions of their needs and priorities in terms of life-long health optimisation and rehabilitation. This exploratory research therefore aims to gain a ‘snapshot’ of the sorts of concerns that people who experience long term disability prioritise. Results will be use to inform the design of future research.

Who me – biased? He ngākau haukume tōku?

Wiki Haumaru Tūroro | Patient Safety Week 2019 is about understanding bias in health care. Having biases toward particular groups or individuals can affect their health as they may not get the proactive care they need.  To start to address this issue, the Health Quality & Safety Commission have developed three video learning modules on bias for people working in the health care sector who engage directly with consumers or who influence the way health organisations are managed.

Module one: Understanding and addressing implicit bias
Module two: Te Tiriti o Waitangi, colonisation and racism (featuring the amazing Dr Matire Harwood)
Module three: Experiences of bias

The modules are an introduction to bias in health care. They encourage health professionals to examine their biases and how they affect the health care they provide, their interactions with consumers, and therefore their health outcomes.

Have a look, reflect on your own practice and be informed!

Nikita McGruer, BHSC (Physio); Jennifer N. Baldwin PhD; Brian T. Ruakere, DHSc and Peter J. Larmer, DHSc

School of Clinical Sciences, Faculty of Health and Environmental Sciences, Auckland University of Technology

A recent paper published in the Journal of Primary Health Care investigates the lived experience of Māori women with osteoarthritis. Their experiences suggest that osteoarthritis adversely affects the spiritual and family wellbeing of Māori women in addition to their physical and mental health.

Seven Māori females aged 44–71 years participated. Physical manifestations of osteoarthritis, namely pain and limited daily activities, affected mental, spiritual and family wellbeing. Participants experienced whakamā (a term to describe being ashamed or embarrassed) and frustration. Cultural duties such as attending the marae were impeded, affecting spiritual wellbeing and cultural identity. Participants described drawing on the strength of their ancestors to cope with their impairments. Western medicine was commonly used, although side-effects were prominent, and few participants had received information about the condition from health professionals.

The authors recommend that culturally sensitive osteoarthritis education for Māori and their whānau is needed in primary care settings.

The centrality of spiritual wellbeing within the Māori outlook on life emerged clearly […] through the themes of āhuatanga Māori and whakapapa. These themes are unique in that they address cultural identity, a significant aspect of being Māori. Critically, women in this study described how their osteoarthritis affected their ability to participate in activities at the marae, having serious implications for their spiritual wellbeing. Provision of information about the causes and management of osteoarthritis to marae and iwi would enable Māori to implement strategies to better support their own people while also maintaining the customs and protocols of their marae.

Access to a copy of this paper is available via: https://www.publish.csiro.au/hc/pdf/HC18079

The 42nd Annual ASSBI Conference was held this year collaboration with the New Zealand Rehabilitation Association (NZRA) at the TSB Arena in Wellington, New Zealand. Wellington is known for its somewhat unpredictable and occasionally unforgiving weather, but put on a phenomenal three days of sunshine and clear skies for us.

The conference theme this year was: “A Call to Action”, drawing on the primary objectives of the World Health Organisation’s Rehabilitation Strategy to 2030. The conference was attended by 261 registrants from all corners of the world: Australia, New Zealand, UK, USA, Estonia, Hong Kong and The Russian Federation. The programme involved plenary sessions from international and national speakers, plus four highly successful preconference workshops, 56 platform papers, 26 datablitz papers, 46 posters, and 5 ‘How to’ sessions.

The conference was opened on the evening of Day 1, with a welcome from Mark Orbsby and Leigh Andrews – mana whenua representatives from Te Whanganui-a-Tara (the Wellington region). Prior in the day, our keynote speakers (Prof. Fiona Jones, Prof. Fary Kahn, Prof. Jonathan Evans, and Dr Matire Harwood) had provided a series of workshops on topics including: self-management after brain injury, practical aspects of research methods, rehabilitation of memory and executive function and strategies to better meet the needs of indigenous people.

On Day 2, Fiona Jones provided an inspiring talk on her CREATE project, which has involved co-production principles to improve patient, carer and staff experiences in inpatient stroke units in the UK. A key message from this presentation was how much could be achieved through robust partnerships between patients, families and health professionals.

Following this plenary, a panel discussion on the topic of “Upscaling Rehabilitation: Policy, Practice, and Politics” was led by Dr Kathie Irwin (Head of Māori and Cultural Capability at the Accident Compensation Corporation, NZ), Anne Hawker (Principle Disability Advisor for the Ministry of Social Development, NZ), and Prof Kath McPherson (Chief Executive of the Health Research Council, NZ). These three fabulous speakers gently challenged our ideas about how to develop rehabilitation in the future, including how to break out of status quo thinking on service delivery and community engagement.

Annual General Meetings for both ASSBI and NZRA were held on Day 2, which saw the election of Prof Robyn Tate and myself to the roles of President for these two organisations, respectively. Our conference dinner was held that evening at the Harbourside Function Venue on the Wellington harbour. Many moves were busted out on the dance floor. No hips were dislocated to anyone’s knowledge. Word has it that the night did not end when the Harbourside Function Venue closed at midnight, but continued – at least for some – in a karaoke bar down the street into the wee hours of the morning.

Day 3 began with an insightful, thought-provoking and wide-ranging presentation from Jon Evans on the topic of music, mindfulness and positive psychotherapy after brain injury. This was followed by many more platform, data blitz, and ‘how to’ presentations throughout the day, covering topics from: paediatric rehabilitation, to information technology in rehabilitation, to research into collaborative approaches and diverse perspectives in rehabilitation. The day, and conference, ended with our award ceremony and prizes. The following is a list of prizes and awarded given out on the day:

• Douglas Tate Award 2018 - Alice Theadom for her publication in Brain Impairment. 2018 Volume 19, Special Issue 2 (Mild Traumatic Brain Injury) – Brain Impairment Theadom, A; Barker-Collo, S; Greenwood, A; Parmar, P; Jones, K; Starkey, N; McPherson, K and Feigin VL on behalf of the BIONIC Research Group Do Mild Traumatic Brain Injury Severity Sub-Classification Systems Help to Identify People Who Go on to Experience Long-Term Symptoms?
• ASSBI Student Awards -

o Kevin Walsh Award – Jai Carmichael for his presentation entitled: Readiness of Community ABI Therapists to Learn and Implement Positive Behaviour Support: A Mixed-Methods Study

o Luria Award – Kellie Stagg for her presentation entitled: Communication impairment and the working alliance in stroke rehabilitation

o Travel Award – Owen Lloyd for his presentation entitled: Impaired Self-Awareness after Paediatric Traumatic Brain Injury: Liability or Protective Factor

• NZRA Awards

o Best Poster Presentation award - Fiona Kumfor for her poster entitled: Prevalence and neurocognitive basis of delusions in dementia

o Best Student Presentation award - Jesse Shapiro for her presentation entitled: No diffusion imaging correlate of paediatric post-concussion syndrome: a TBSS study

• Mindlink Brightwater award was won by Vanessa Rausa - Delivering concussion evidence to the community: A digital solution

One last highlight of the conference which needs to be mentioned is the amazing artwork of Paul Telling from Visual StoryTeller. Paul worked harder than perhaps anybody else at the conference, continuously designing storyboard posters about each presentation as they were being presented. The art from this work was on display in the venue foyer for reading and enjoying between sessions. A great many of these storyboards went home with presenters and audience members alike and are now no doubt in offices and rehabilitation centres throughout NZ and Australia.

• All of the artwork by Paul Telling for the conference presentations can be downloaded here.

A big thank you to everyone who made this conference a success. Thank you to all our conference partners: ACC, Laura Fergusson New Zealand, Drake Medox, ABI Rehabillitation, AUT University’s Centre for Person Centred Research, University of Otago’s Rehabilitation Teaching and Research Centre, Cambridge University Press, AUT University, Brain Research New Zealand, the University of New South Wales. Thank you also to the 2019 Conference Organising Committee: Nicola Kayes, Jacinta Douglas, Leanne Togher, Debbie Snell, Felicity Bright, Jonathan Armstrong and Andrew Clarkson as well as the Scientific Committee. Finally, none of this could have been achieved without, of course, the fabulous direction and support of Margaret Eagers. Thank you all for making the ASSBI/NZRA conference 2019 such a fantastic success.

A/Prof William Levack

Conference Convenor

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?

• I made sure findings were reported in published papers within peer-reviewed journals
• I worked within the NZRDA – liaising with both the Board and national training team
• I conducted workshops for therapists and coaches who coordinate riding sessions - to help them to integrate findings into their existing understandings, role experience and clinical expertise.
• I ensured that volunteers (upon whom the NZRDA depend) heard about the study findings and recommendations by presenting at the yearly NZRDA national training days.  In this forum, I particularly focused on ensuring that the messages they heard were based on agreed-upon concepts – e.g. what is health, what is being aimed for when we provide health-optimising interventions, what do we mean by child- and family-centred practices etc.

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.

• If you want to ask more about therapeutic riding and how it optimises health outcomes for young people experiencing disability, feel free to email Rachelle at rachelle.martin@otago.ac.nz
• If you would like a copy of the infographic or comic, they can be accessed at: http://hdl.handle.net/10523/9019

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.”

Congratulations Fiona!

Contact Fiona on fi.graham@otago.ac.nz if you have any questions about this research.