Putting stroke patients in charge improves quality of life

But, but, but we are told to defer to our medical staff and not attempt to get answers outside of that relationship.
http://www.sciencecodex.com/read/putting_stroke_patients_in_charge_improves_quality_of_life-81583
Community rehabilitation interventions for stroke patients have not had a great track record of delivering measurable improvements. But new research from New Zealand focused on Maori and Pacific populations shows how a cheap and simple intervention that puts the patient and families in charge can make a difference to their quality of life. The study can be found in the journal Clinical Rehabilitation, which is published by SAGE.
Two interventions were trialled in this multi-center, randomized study: an inspirational DVD, and a guided 'Take Charge' session. Patients given these interventions shortly after discharge from hospital were followed up a year later, to evaluate their health-related quality of life. The Take Charge session improved patients' physical health scores on a scale of 0-100 by six points, while the DVD upped the result by one point. Those who had received a Take Charge session were also less likely to be rated with more than 'slight disability,' and their carers reported a lower degree of strain.
According to theory, when someone takes charge of their own recovery from an illness or in managing a disability, their perceived quality of life improves. Yet few community rehabilitation interventions have proven effective for those who have suffered a stroke. Most are therapy-led, or involve support workers. However, a third approach in community intervention involves handing back responsibility to the patient, and promoting their self-confidence. This is the approach used in the New Zealand intervention, known as self-directed rehabilitation.
According to the authors of this report, stroke patients of Maori and Pacific ethnicity have some of the worst outcomes, despite similar levels of activity and independence to New Zealanders of European heritage on leaving hospital. So these two groups were targeted in this study. However, the authors say that emphasis on self-directed rehabilitation has the potential to improve outcomes for stroke patients from any culture.
The patients were randomised to receive one, both, or neither of the interventions. The inspirational DVD, which subjects could watch as many times as they wanted, was about stroke and stroke recovery. It featured stories told by four Maori and Pacific people and their families. The dominant messages were the potential for positive outcomes, overcoming adversity, personal and family roles and their contribution to recovery, encouraging meaningful activity and participation for the person with stroke, and where to access resources.
The Take Charge session was an 80 minute individualised assessment with a structured risk factor and activities of daily living assessment. Designed to engage the patient and their family in the recovery process, it helped them to identify for themselves areas where they could make progress and set personal goals. This differs from what a stroke liaison worker or stroke family support worker might do, because the research assistant delivering this intervention just went through a checklist, listened and facilitated the process where the person and their family reviewed opportunities for taking charge. The results suggest that these types of intervention merit consideration for use in other populations.
"Many current interventions could be further developed to maximize opportunities for stroke people of any ethnicity to take charge," said one of the study's authors, Dr Harry McNaughton. "This may require some rethinking of goal-setting strategies and avoiding the temptation for clinicians to lead this process, and also being much more open to ideas from the person and their family."
The control group received neither of the two interventions but did receive written material about stroke for people and their families, covering diagnosis, consequences, risk factors, secondary prevention and recovery after stroke. Both interventions and the control materials were delivered by research assistants of the same ethnicity as the study participants. In total, 172 participants took part (94 identified as Maori and 78 as Pacific). Of these, 139 were available to follow up 12 months later.