03 | Hope

Discussion

Guillain-Barré Syndrome (GBS) is a debilitating disease that can strike unexpectedly at any age and result in serious neuromuscular paralysis, including different degrees of tetraplegia. 5 6 7 GBS presents specific challenges and opportunities that are well-illustrated in Helen’s case.

"The interaction between a person's sense of hope and rehabilitation management can be a significant factor in driving recovery."

For Helen, like with many GBS patients, a significant challenge to rehabilitation involves the uncertain prognosis  – individuals progress at a different rate through the phases of the disease, and reach different levels of recovery. 8 9 10 As evident in Helen’s final evaluation, this uncertainty makes accurate prediction of rehabilitation outcomes difficult. However, having specific short-term goals that can be adjusted according to improvement can provide a good and accurate picture of progress along the continuum of rehabilitation.

Helen’s hopeful personality demonstrated some of the opportunities and potential pitfalls of hope as it relates to GBS. Helen's case has shown that hope can play a critical role in the recovery phase of GBS when it is focused on attainable goals. 2 3 Hope and the influence of hope in rehabilitation is influenced by a variety of factors. 3 13 14 In Helen’s case, she struggled against dependency and sought autonomy. Her knowledge about the disease, her personality and the degree to which the rehabilitation team was able to support and strengthen her sense of hope all played a role in her achievements. The rehabilitation team helped to set realistic goals and refocused those that were less realistic, such as Helen's strong desire to spotlight improvement in her hand use as the focus of rehabilitation. Importantly, without demotivating Helen the rehabilitation team was able to refocus and encourage her in those areas where she could most improve. Helen’s sense of hope toward recovery and independence was further reinforced as many of her intervention targets gradually improved and milestones were met. In fact, the goals established for Helen were reached beyond all expectations.

The interaction between a person's sense of hope and rehabilitation management can be a significant factor in driving recovery. While it is certainly true that a shift from a pessimistic to an optimistic personality is probably difficult if not impossible, it is the rehabilitation team's obligation to help support, guide and focus the person's hopes as best as possible, and assist him or her to avoid the pitfalls of setting unrealistic goals. Reliable information and attainable short-term milestones foster the sense of hope in a person with GBS.

ICF Research Branch CoordinatorICF Research Branch in cooperation with the WHO Collaborating Centre for the Family of International Classifications in Germany (at DIMDI)

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