In my view getting to know about family system should be focused on while designing comprehensive rehabilitation strategies(physical, speech and cognition) for Neuromuscular disorders.
Family involvement plays a very vital role in improving activity and participation level of ICF, what if family system is not strong enough?
I agree that the family system plays a vital role for the individual experiencing a neuromuscular disorder. As an occupational therapist, it is crucial to incorporate the family in the goal and discharge planning to design a comprehensive program that prepares the individual with the needed or desired level of functioning for return to their home environment. Unfortunately, it is not uncommon to have a client who does not have sufficient family support to return to their prior environment at the level of function the rehabilitation team anticipates at the end of treatment. In these cases, we pursue other social supports taking into account the level of care required, finances, and the personal preferences and goals of the client. Establishing a solid medical, social, and occupational history during evaluation is vital to facilitate this holistic client-centered care approach. A single discipline can not provide this level of support which is why it is essential to develop strong interdisciplinary teams with efficient lines of communication to works collectively to achieve the best outcomes for the client.
According to the ICF, family commitment can be categorized as a barrier within the evaluation. Concerning this indicator, it will show a problem or difficulty in its performance profile (high importance indicator). In neurorehabilitation, it commonly occurs that the family support network is weak or lackadaisical. The mission would be for social workers, psychologists, and therapists to find social and health tools to provide quality care to the patient. Unfortunately, much more happens when there are fewer economic resources. Samia Sarmad Cheers.
I agree. In the absence of such a support structure, the development of self efficacy and motivation is a worthwhile next step.
Brands, I., Custers, M., & van Heugten, C. (2017). Self-efficacy and quality of life after low-intensity neuropsychological rehabilitation: A pre-post intervention study. NeuroRehabilitation, 40(4), 587–594. https://doi.org/10.3233/NRE-171446
Family involvement definitely play a very important role in rehabilitation of any neuromuscular disorder since most of them are long term diseases and require long term rehabilitation, an hour session with a therapist is not enough until rest of 23 hours are also utilized for the recovery of patient these 23 hours of that patient are in hand of family members including 1.following home plans
2.proper positioning of patients ( if bed ridden)
3 Psychological support as well as motivation
If family is not interested or has no knowledge about the disease of the patient recovery is probably not possible.
In my region I have seen patients of hemiplegia dying early and bed ridden even though the recovery was possible and prognosis was comparitvely good because therapist focus on therapy properly but since the communication was not good with attendent who was aspecting a quick recovery, stops treatment in 1 or 2 month because progress was not up to the mark of his asspectations.
So it is really very important for the recovery of the patient that family should be involved, aware and guided of the disease process and recovery progress of his/her patient.
amazing point of view Rooma Rouf Chughtai
kind of test you used to check the proper positioning of patients ? or this concept is more descriptive?
and, if the family has not participate of the treatment or evaluation, there a category for these kind of families ?
best,
Ignacio
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