Table 3 Categories and subcategories of meaningful treatment effects based on lived experience with cerebral palsy
Category/subcategories | Description | Example response/s |
|---|---|---|
Motor function | Improved ability to perform voluntary movement and control involuntary movement | “Any improvement in motor function would be wonderful for my son as he does not have any independent/intentional movement.” |
Fine motor function | Improvement in small movements using the hands and smaller muscle groups, like the fingers | “More fine motor control in fingers/hands better able to grasp and manipulate things.” |
Gross motor function | Improvement in skills that involve large muscle groups, e.g., standing, walking, running, crawling, stability, flexibility, balance and coordination | “…if his walking improved just a tiny bit.” |
Motor disorders of CP | Reduction in the symptoms of motor disorders including spasticity, dystonia and ataxia | “Less spasticity in my leg muscles.” |
Activities of daily living | Increased ability to perform essential and routine daily tasks | “Increased ability in day to day functions.” |
Self-care | Increased ability to perform essential everyday tasks to care for oneself, e.g., grooming, eating, bathing and toileting | “For her to be able to hold a fork or spoon and feed herself.” |
Transfers | Improved transfers, e.g., from wheelchair to commode, in and out of vehicle | “Easier transfers from wheelchair to bed or toilet and back.” |
Socialization | Improved socialization, e.g., play, keeping up with peers, sport, crafts and music | “Play like other children.” |
Cognitive function and intellectual capacity | Improved cognitive function, e.g., learning, understanding and intellect | “Improve her intellectual/mental capacity.” |
Communication | Increased ability to communicate, e.g., improved speed and clarity of speech, use of communication devices | “If you could tell me it would likely help him speak, or use his hands to sign clearly, I'd probably take the risk.” |
Independence | Increased independence for the person with cerebral palsy or parents/carers, including reduced reliance on parents/carers | “If it achieves independence or a level of independence then that would be worth the risks.” “If my brother can help himself get ready or be able to transport himself even a little bit without assistance from the family, that would be great.” |
Dependence on interventions | Reduced use or independence from physical therapy, drugs, surgery, devices and interventions, e.g., botox, ankle–foot orthosis | “…the ability to give up his Botox injections.” “…to reduce recurrent surgeries for hips or spine.” |
Quality of life | Improved quality of life for person with cerebral palsy, parent, carer or family | “…improvement in their quality of life and the quality of life for the family.” |
Physical | Reduced pain, fatigue and risk of injuries | “I'd love to be able to have better days then worse days. To wake up with no pain.” |
Psychological | Happier life, dignity and confidence | “It would mean inclusion. And validation to her that she is a valuable asset. Currently she is spoken over, ignored, or spoken down to.” |
Any improvement | Any improvement across any domain deemed “worthwhile” | “We would take any improvement we can get.” |