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