Shaping the World Stroke Campaign 2018

The World Stroke Campaign theme for 2018 is ‘support’.  With such a broad topic we have been working to agree what ‘support’ means to SSO members and to refine the focus of the campaign in 2018. Consultation workshops with SSO representatives across Europe were delivered as part of the programme of the SAFE Annual Conference in Zagreb in December 2017. In these workshops participants were asked to consider three key questions relating to the existing themes identified in the World Stroke Campaign Strategy:

1          Access to support for life after stroke 

2          Support for self-management*

3          Addressing barriers to social integration

Workshop groups were divided into three discussion groups and allocated a topic to discuss and capture key issues and potential solutions for one of the themes.  All participants were then given a number of stars and invited to place these against issues and solutions that had been identified in discussion.

* Participants in workshops disliked the term self-management and preferred the term ‘recovery’, which was more positive, less service oriented and didn’t run the risk of being considered ‘care on the cheap’.

It was acknowledged that recovery didn’t mean a return to pre-stroke condition but achieving the best possible post-stroke outcome characterised by a good quality of life and positive well-being.

Clear cross-cutting issues emerged from the analysis of workshop contributions and discussions made clear that while potential topics could be identified these addressing one could be highly interdependent with addressing another. E.g. effective rehabilitation requires individual motivation, which can be linked to self-worth, which can be linked to access to meaningful activity and social networks. Similarly addressing disability discrimination and stigma is critical to returning to the work.

Rehabilitation and recovery	Rehabilitation for all stroke patients should be guaranteed both shortly after and for the long term with effective transition planning and options for acute to long-term recovery. Even in high resource countries with highly developed healthcare systems rehabilitation is not given a priority and is not accessible to stroke survivors. Rehabilitation and recovery is a lifelong process and maintaining commitment is tough. Motivation is closely linked to effective rehabilitation in the short and long term. Maintaining a recovery focus in chronic phase is helped if services are accessible, signposted and if survivors, caregivers and professionals have hope. Financial barriers to rehab access need to be addressed and rehabilitation should be available in centres and at home. Social rehabilitation isn’t given enough attention, but is important to achieving positive well-being which is critical to physical rehabilitation. Awareness of and engagement in effective self-managed rehab activities is important, but self managed/family supervised rehabilitation can’t be seen as a replacement for core services or ‘care on the cheap’.  Accessibility of potential rehab activities for stroke survivors with physical disabilities and communication difficulties/aphasia.
Psychosocial support	Accessibility of information about support for stroke survivors and caregivers is essential and some may need help to access due to vision and communication difficulties. Can’t assume that everyone has computer skills or a computer – people may need help to find the information they need. Stroke survivors often struggle to adjust to their ‘new normal’. Adjusting to loss and addressing depression and low self-confidence is important. Access to psychological therapies and meaningful activity is helpful. Getting back to work or being useful has a positive impact on self-esteem and well-being. Successful social integration is dependent on the removal of barriers.
Financial issues	Financial barriers to recovery were identified as key issue for stroke survivors and families. Even when healthcare is provided by government or social insurance, care is often only in the acute and post-acute phase and patients ‘fall off a cliff’ 6 wks after discharge with costs having to be met out of pocket. Longer-term health, rehab and home adjustment costs are not always available and it is often unclear who should pay – the individual or the government. Governments need to ensure access to post-stroke care in chronic stage. Social security systems and information about benefits rights need to be available for stroke survivors and families.
Discrimination and stigma	Stroke stigma and disability discrimination was consistently identified as a priority issue for stroke survivors as it created very real barriers to service access and social integration post-stroke. Physical access is just one part of accessibility, stroke survivors need people to understand and find ways to address communication and visual difficulties that they experience. Addressing workplace discrimination was critical to addressing financial and psychosocial issues faced by stroke survivors. Legislation is needed to address discrimination and barriers to access to services, social and cultural opportunities and work. Survivors and families should be informed of their rights and supported to access them. Access to SSOs is essential for providing stroke survivors and care-givers with opportunities to meet and share experiences. Peer to peer communication mitigates some of the impact of stigma and discrimination
Family and friends	Spouses and family members also experience loss and adjustment difficulties after a loved one has a stroke, it is important to recognize their need for psychological and practical support. The impact of stroke and the caring role is often overlooked and needs more attention by primary care providers. Carer’s assessments should be made available. Carer’s health and well-being should be an important consideration for their primary healthcare providers. Caregivers groups are an important source of support in adjusting to a caring role and accessing support and rights.

What do you think?

An online questionnaire has been developed to gather views from SSOs who weren’t represented at the Zagreb. Please share the questionnaire along with the table above to provide some context for the categories and help us to make the World Stroke Day campaign as relevant as it can be to our global audience.

After the survey closes on March 16th, analysis of the questionnaire will be undertaken by the Campaign Working Group and will inform the creative brief that is developed for the campaign in 2017.

For more information about the campaign contact campaigns@world-stroke.org

Testimonial Exhibition at the World Stroke Congress October 2018

We want to make sure that the voices of people affected by stroke are heard throughout the

Congress in an exhibition of stroke survivor, family and caregiver testimonials.

The 11th World Stroke Congress will focus on the latest developments in stroke prevention, acute management and restorative care after stroke. Reducing the burden of stroke on people with lived experience and their family and care givers drives everything the World Stroke Organization does. 

In previous years the visibility of people with lived experience of stroke has been promoted through art exhibitions, both physical and online, and a hobbies ebook. 

In 2018 our exhibition will focus on the testimonials of people with lived experience of stroke. 

We are calling on both stroke support organizations to gather testimonials from the people they work with, and on individuals to share their own testimonials, with the following brief:

150 words and include a digital portrait photo.

• Start with your name, nationality and your previous or current work or volunteer role

• When did you have your stroke and at what age?

• How did medical and allied professionals help you in your treatment and care?  

• Who and what has helped in your recovery?

• Is there anyone you would like to thank?

Please send to Sarah Belson sarah.belson@stroke.org.uk by 30^th April 2018.

Qualitative Inquiry for Improving Stroke Care in China

Jackie Xu, Duke University

This past US summer 2017, I studied with Tiantan Hospital in Beijing, China. “Tiantan” means “Temple of Heaven”, referring to the hospital’s close proximity to the tourist site—though I think it is a fitting location for a healthcare center as well.

Walking through the glass doors of the Tiantan’s stroke center research unit on my first day, I was amazed by the depth and breadth of healthcare work concentrated in one location. The hospital itself is a restless place with patients constantly streaming in and out, and Tiantan has also set up a vibrant learning environment for its trainees. The entire stroke unit meets every morning to review patient cases together. Every other week, the director of the neuro-intensive care unit leads journal clubs. I was fortunate to have such a supportive environment to learn and explore, working with students, clinical trainees, health care providers and faculty at Tiantan and its affiliated Capital Medical University on understanding stroke care in China through two research projects – one quantitative and one qualitative.

After taking a few days to settle into my summer home, I approached my Tiantan mentors with my qualitative research project plan. This was a project to understand how to increase stroke patient medication adherence from a health systems perspective. Data from the Chinese National Stroke Registry and other stroke cohorts already identified adherence as a problem. My question was, “What are the system barriers and facilitators to improve stroke patient medication adherence after hospital discharge?”. This included a plan to complete interviews to collect opinions and perspectives from multiple people with roles aligned with this problem—including patients, acute and community-based healthcare providers, pharmaceutical company representatives, and Ministry of Health officials. The idea of a qualitative study received mixed responses from the clinical research mentors.

On the one hand, my mentors were interested in exploring qualitative methods, not commonly used in China’s medical research practices. On the other hand, they worried about the level of rigor in qualitative interview methods and expressed concern over the ability to publish results with this type of data.

At first, it was frustrating to receive this feedback. Although I am an undergraduate student with little prior experience related to stroke, the data spoke for itself—medication adherence is a pressing issue for stroke patients in China. Previous studies led by Tiantan faculty demonstrated a need to understand system barriers and means to improving medication adherence. I held the rooted belief that I had an important research question, vital to improving the lives of stroke patients in China. Yet at the same time, I knew that I didn’t have the full picture. My position both as an undergraduate student and an outsider to this community left me doubting myself about what I didn’t know.

However, as I learned more about the research landscape in China, I came to a greater understanding of Tiantan leaderships’ perspectives on qualitative and quantitative research. Despite China’s extraordinary economic and technological advances, the quality of research coming out of China is still being scrutinized[i]. In efforts to clear doubts over data validity, clinician scientists in China put forward Herculean efforts to master English and apply for prestigious fellowships abroad, maintain an 8am to 8pm work schedule, employ personnel to support improved data quality, and manage large clinical and research infrastructures proportionate to the size of the population (really large). Yet, research from China still remains under question.

Contextualizing my environment propelled me to build the case for qualitative research as a valid and valued method of study with Tiantan and its affiliated students and faculty. I presented the journal club’s first qualitative study, answering many questions afterward.  I branched out of my immediate Tiantan network to build a team of project advocates. Along the way, I listened to concerns of clinicians and was mentored for a related quantitative study on medication adherence post-stroke. We successfully exchanged research knowledge and experiences.

Both projects came to fruition. Shadowing at inpatient units and outpatient clinics, traveling to facilities around Beijing for physician interviews, and eating too many takeout dinners on late nights with my fellow colleagues, I felt like I had truly begun to understand the complexities of the Chinese healthcare system.

I found that at the core, people at Tiantan were open to new ideas. Inhibitions stemmed not from fear of novelty but a yearning for professional respect—co-workers with paralyzing scares of data falsification, journals focused on research from prestigious Western institutes, and a “globalization” driven and dominated by developed countries. For China, gaining mutual respect from colleagues was an evolutionary process.

This summer, I served as an ambassador from my American-based university and navigated this new and sometimes enigmatic partnership between two leading healthcare institutions—Duke and Tiantan—separated by the Pacific Ocean. My work advocating for qualitative research methods in China taught me how to identify project champions and engage key stakeholders. Collaboration, and therefore mutual respect, is the key to research.

About the Author:

Jackie is a Chinese-American junior at Duke University studying Public Policy. Jackie is passionate about creating systemic, sustainable change for healthcare systems around the world. She serves on the Global Alliance on Disability and Healthcare Innovation (GANDHI) research team, headed by Dr. Janet Prvu Bettger at Duke. Jackie loves meeting new people, so feel free to reach out with questions, comments, or reactions at Jacqueline.xu@duke.edu.

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[i] Wan Z. China’s scientific progress hinges on access to data. Nature 2015 Apr 30; 520: 587.