A Story Duong Van Cuong
By Kate Lhuede (VNAH Volunteer Occupational Therapist)
The OT and the VNAH team including a physiotherapist conducted a home visit Duong Van Cuong, a young man of 28 years living with his mother and father in rural Tay Ninh. The beneficiary had a diagnosis of Cerebral Palsy with upper and lower limb contractures and challenges with increased tone. His father works and his mother’s role is as her son’s caregiver and home maker. The beneficiary is dependent on his mother for all his ADL’s. He cannot walk or move from floor to bed or bed to chair. He needs help from his mother for all his mobility and she carries him to the bathroom and toilet and his mother props him up for eating. The beneficiary has no verbal speech but had good sight and hearing and is able to communicate his needs by nonverbal gestures and sounds. This man spends the majority of his time on the floor in the front living area. He appeared to be well cared for by his mother. The beneficiary was obviously pleased to see the team visiting him by frequently giving us all a big smile.
What was I thinking the Occupational Therapy intervention might be?
If you spend all your time because of your disability lying on your back, your world becomes very small and limited. A core philosophy of OT is about the capacity of all people including those with severe disabilities to participate and be active in their communities. I immediately wanted to assess and provide interventions that would result in the beneficiary sitting in a chair.
What did we do?
We placed the beneficiary in a chair with arm rests and he sat upright for the first time in many years. We firstly trialed the patient in a plastic chair without armrests or a high back and the patient was able to sit but needed a lot of support by staff on either side of him to do so and his poor balance made him at risk of falling.
The Occupational Therapist was assessing and scanning the home environment for another chair that might provide better support for the patient and noticed furniture in the more private area of the home used for guests. The mother generously gave us permission to carry this heavy chair from the formal room to the kitchen area where the interview and assessment was conducted. This chair was identified as much more suitable for her son to commence sitting in; it was heavier and sturdier with solid armrests that son could be taught to hold onto to assist his mother when transferring from the floor.
We educated the mother and patient about the best and easier method of transferring her son from the floor onto the chair.
What were the results?
We talked to the patient and his mother about the new things he could see sitting upright in a chair. The patient could now observe what was happening in the kitchen area around him as well as the movement of cattle in the front yard, the dogs sleeping under the bed and the neighbors going past on scooters.
The VNAH team could communicate with the patient with full eye to eye contact sitting opposite us rather than standing over and above him to talk with him. Communicating with us while sitting also meant that the patient was less reliant on his mother to communicate his needs. The patient had much more functional use of his upper limbs and hands more easily; he could better observe, manipulate and hold a bottle of water from a seated position with the bottle placed in his lap.
Most importantly was the response of the mother and son. The patient was able to communicate how pleased and excited he was to be able to observe and communicate with the team and his mother from a seated position. His mother was very affected by the pleasure she saw in her son’s eyes at the change in his abilities and increased independence and social participation all resulting from the simple intervention of moving her son from lying on the floor to sitting upright and straight in a chair.
The team offered to return the chair back to the formal area of the home. The son made it clear he wanted to remain in the chair for the rest of the day and the mother stated the chair would now remain permanently in the kitchen to be used every day by her son. This decision by the mother was a measure of the usefulness of the occupational therapy assessment and intervention that was conducted.
At completion of this, the Occupational Therapist and the VNAH team went onto conduct home assessments for another two young men also with cerebral palsy who also spent all of their time in a lying position on either their floor or bed. The team repeated at these visits what was done at the visit outlined above.
This success story outlines the impact of very simple and inexpensive interventions of changing posture and positioning of patients with severe deformities associated with cerebral palsy. These interventions can significantly improve the functional abilities and increase the range of occupations and activities people with disabilities can participate in. This case also highlights how the impact of simple solutions has the potential to address caregiver burden. Finally, simple interventions including environmental assessment improves the lived experience and quality of life of patients, their families and caregivers.