Managing After Stroke

Rutherford, Sandy
Hocking, Clare
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Doctor of Philosophy
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Auckland University of Technology

Self-management of chronic conditions is a set of approaches, comprised of mostly group programme interventions. These interventions aim to teach participants to take an active role in managing their health condition(s) and to provide them with the skills required to manage and live well. The structure and content of programme interventions are based on medical understandings of long-term conditions and have largely retained the same format since first designed. Despite decades of research and application, the benefits of conventional self-management programmes remain modest and of short duration. Alternative models, such as capability theory, which take into account the societal conditions which make it difficult to implement management strategies may offer a new approach.

This doctoral study aimed to construct new knowledge that would assist clinicians to support and enable people to manage after stroke. This was achieved by asking the question – what can be learnt about self-management after stroke, from talking to stroke survivors and significant others? Nested within a larger qualitative longitudinal study which interviewed people (and their significant others) following a stroke at four timepoints over three years, this doctoral work utilised qualitative descriptive and interpretive description methodologies to understand how people manage and the societal conditions with impact on how people manage.

Three layers of analysis were completed to address the research question. In the first phase the foundations for managing were explored by a targeted analysis of data co-constructed at 6 months after stroke of 52 people and 26 significant others. It was found that participants needed to manage biographical disruption and formulate a cause for their stroke, in order to know what to do. These findings prompted the second study which re-explored the 6 month data to reveal the resources participants had to draw on to address disruption and develop a foundation upon which to manage. Participants mostly managed alone, drawing on whatever resources were available to them. Those with many resources managed better than those with few resources.

The third study was a longitudinal qualitative analysis of data co-constructed with 12 participants purposively selected from the parent study, at 6-, 12-, 24- and 36-months after stroke. This study explored how ways of managing were used and developed through time. To move forward and manage, participants needed to construct new understandings of stroke and of themselves. Finding ways to resume, develop and balance active and reflective activities, created a sense of wellbeing. Also connecting with others and reciprocating support from important people was essential to managing.

This doctoral study demonstrated that managing stroke was a continuous process of trial and error over the three years after stroke. No one managed all aspects of life after stroke, and no participants failed to manage any of the consequences of stroke. This research moves beyond describing the experience of stroke to creating new knowledge about what participants did to manage stroke. A rich and detailed understanding of managing after stroke was produced which illuminates the need for person centred, contextual and political approaches. Also, findings highlight the need for interventions to identify, increase, and utilise social, economic, and cultural capital. The findings point to interventions that increase health literacy, and equity and integrate health and social services, as being necessary to support people to manage after stroke. Rethinking stroke self-management to be ongoing support, interventions embedded into usual care and innovations to reduce systemic and societal barriers to managing over time, rather than being the responsibility of individuals that is only relevant in the acute phase post-stroke, produced contemporary understandings of what it is to manage after stroke.

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