Janet Bettger’s Response to “Building momentum in young stroke research and services in Australia”
By Janet Bettger, Duke University
Life can change in an instant. Without notice, a stroke can be life-altering with rippling effects that extend far beyond the individual and years into the future. Yet, significantly more attention is paid to what happens in the first week and month after a stroke than the time that follows. Young stroke survivors are telling us that we need to shift the conversation from what it takes to survive a stroke to what it takes to help live.
I am excited about the research on young stroke survivor needs described in the article, “Building Momentum in Young Stroke Research and Services in Australia.” Involving the people we serve in our health service delivery planning is the key to providing person-centered care. One of our challenges in the United States is how different the care trajectory looks for young stroke patients. More than 60% of young stroke survivors are discharged home from the hospital without any additional services. What this means is that someone suddenly experiences a stroke, is in the acute hospital for four days, and is then discharged home to face the world again. Ideally, there will be a follow-up visit with stroke specialists and then continued management with primary care. Even with no residual impairment, this experience needs a network of support. It is going to take more than formal healthcare services. The World Health Organization is urging everyone to think about improving coordination across sectors so that we create an enabling environment.
Figure. Socio-ecological model
There are several research studies and initiatives in the United States working to improve the transition home from the hospital after a stroke. Patients and caregivers have joined us as research partners to shape the interventions aimed to improve their health. We were reminded of the importance of different levels of support that were needed: social support, school and employment-based services, community-based services local to their neighborhoods and in the regions they lived, and local, state and national policies (figure left). We quickly realized that making this network of services and supports a reality was going to be more challenging for young stroke survivors.
Refocusing research and resources to support young stroke survivors to re-enter and re-join life after stroke will require us to think differently about collaboration. Current evidence suggests that interventions provided simultaneously at several levels (interpersonal, organizational, community, and policy) are most likely to be successful in achieving positive health outcomes. For example, parenting is a valued social role and the needs of stroke survivors with children get even less attention from formal service programs than skills training to return to work. There is so little research with stroke survivors who are parents—one of our graduate students identified only four studies to date with less than 100 parents in total! While it isn’t clear if our formal healthcare system addresses the needs of parents after an acute stroke, we’re fairly certain organized support is not available for the survivor to function in this role when returning home. For these young stroke survivors who have children living at home, creative solutions from neighborhood carpooling to support extracurricular activities to community meal programs may need to be considered. Reciprocity is a powerful aspect of social circles. Neighborhood task-sharing that includes areas a stroke survivor can contribute may help alleviate the burden on individual family units and expand a sense of community beyond a household.
For stroke survivors in school and work, we may need to think purposefully about personalizing support services to enable stroke survivors to succeed. When these services do not exist, reaching out to other schools or like employers may open up new areas for partnership between organizations, leverage potentially underutilized services, and support a broader group of people. Continuing in these life roles can be challenging and difficult for others to comprehend; social support will also be important. Leveraging technology and social media may be an opportunity to not only help with communication and to maintain social ties, but also expand young stroke survivors’ formal and informal social networks beyond individual neighborhoods, schools and places of employment.
A significant amount of work is needed to increase awareness that 1 in 10 strokes occur among people younger than age 50 in the United States and that these survivors have unique needs. With increased awareness we’ll have a stronger foundation from which to build a multi-level network of services and support. Development may be one community at a time but soon we’ll have a model that we can expand and evolve to regions across the country.