03 | Hope

Evaluation

Helen’s evaluation just one month into the second Rehab Cycle was quite remarkable.

I can move the wheelchair on my own now and this gives me a little more independence and freedom  – but this little bit is so much to me! I don't need to be accompanied any longer. Actually, my hope and goal [of improving hand function] wasn't met, but a lot of other things improved.

Helen

At eight months following the onset of Guillain-Barré Syndrome (GBS) and one month after the start of this Rehab Cycle, Helen exceeded all expectations. Her respiratory functions improved to the extent that her tracheostomy tube was able to be removed. She was also able to transfer herself to and from her bed to her newly-chosen wheelchair and was able to move around using the wheelchair independently.

"At eight months following the onset of GBS... Helen exceeded all expectations."

These improvements in her functioning, among other things, were documented in the ICF Evaluation Display. See table 3. Helen's ICF Evaluation Display illustrates the results of the evaluation after eight months of rehabilitation interventions; it shows the goals attained. Noteworthy is the fact that many of Helen's goals were achieved beyond expectations Especially noteworthy was her achievement in the intervention target ‘Transferring oneself while sitting’. Helen's rehabilitation team aimed to maintain a goal value of ‘3’ or severe impairment (the value at the initial assessment was also ‘3’). At re-evaluation, Helen's ability to transfer herself while sitting was rated with ‘1’ or only mild impairment. This was a major improvement.

Figure 3: ICF Evaluation Display

Table 3: ICF Evaluation Display; ICF Qualifier: rate the extent of problems (0 = no problem to 4 = complete problem) in the components of body functions (b), body structures (s), activities and participation (d) and the extent of positive (+) or negative impact of environmental (e) and personal factors (pf); Goal Relation: 1, 2, 3 refers to Cycle goal 1, 2, 3; SP refers to Service-Program goal; Goal value refers to the ICF qualifier to achieve after an intervention; Goal achievement: + means achieved, - means not achieved

While certainly a positive development in Helen’s recovery and strive for independence, these exceptional results exemplifies the difficulty Helen's rehabilitation team had in making an accurate prognosis about her rehabilitation outcome.

To Helen’s elation and despite falling short of her initial hopes for substantial improvement in hand functions, all three cycle goals were met.

My lungs are better and I can breathe at night now just wearing a face mask. I can raise my legs a little better and move my arms while I am lying. Even transferring works well now, and this was pretty difficult for me.

I am getting more and more hopeful, because I am continuously able to do more things. I’d say that this further strengthens my optimism. The therapists also keep me optimistic; they understand how to motivate me, and I have a good relationship with them. I also deeply feel that I’m more stable now. Maybe this has resulted from my inner strength. In fact, I have to say that this disease has made me stronger.

Regarding optimism, I need optimism to have hope; it is an essential part of hope. And having hope also depends a lot on my environment. If I had been somewhere where I did not feel comfortable, I would not have recovered very well, and my optimism and hope would have been diminished. Here I really feel optimally supported. How I am looked after and treated has actually helped me experience hope and optimism. I can definitely sense if someone is treating me only as a job or because he or she enjoys it and wants to achieve success. This has a lot of influence on me. Now I feel that my strength is coming back.

Helen

Despite this progress, Helen still had many challenges to confront on her path to recovery. For example, her mobility was still very limited due to the impaired use of her arms and hands, and her respiratory functions were still somewhat hindered despite the strides made. Furthermore, her health insurance did not cover all of her rehabilitation costs, leaving financial worries on the horizon.

"I am getting more and more hopeful, because I am continously able to do more things. I'd say that this further strengthens my optimism."

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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