Parents of children with neuromuscular diseases who are prescribed wheelchair use should be involved in this process and receive psychological care and social support to facilitate transition to wheelchair equipment, according to a recent study.
The study, “It’s not just the wheelchair, it’s everything else”: Australian parents’ perspectives of wheelchair prescription for children with neuromuscular disorders,” was published in Disability and Rehabilitation.
It is recommended that children with neuromuscular disorders, including spinal muscular atrophy (SMA), begin using assistive devices such as wheelchairs in a timely manner, not waiting for ineffective walking or walking cessation prior to wheelchair prescription.
This is particularly important as there is evidence that “the inability to produce independent and spontaneous movement has implications for child psychosocial development, cognition, communication skills, and participation in age-appropriate activities,” researchers said.
However, assistive devices such as power wheelchairs can be perceived by parents as “interfering with their child’s development of motor function and physical abilities, and are often viewed as a ‘last resort.’”
The transition to a wheelchair can have significant consequences for families and generate feelings of sorrow and loss, potentially delaying prescription uptake. As such, engaging parents during this process is crucial to its success, but getting them on board might be difficult, as they have to adapt emotionally and logistically to the new equipment.
A team of Australian researchers interviewed 17 families of children who had neuromuscular disorders and had been recommended wheelchair use, either power or manual. The researchers then compiled these interviews and identified recurring topics to understand how parents deal with a wheelchair diagnosis.
The participants (age 0-18 years) were identified using the Sydney Children’s Hospitals Network multidisciplinary neuromuscular clinics in Australia. They had been diagnosed with SMA (8), Duchenne’s muscular dystrophy (7), or another type of muscular dystrophy (2). Parents were then invited to participate in the interview.
Parents reported having mixed responses, including sadness and denial, when they received the diagnosis, as it confronted them with the reality of their child’s disease and meant “coming to terms with a life different to what they had envisioned for their child and family, generating uncertainty about the future.” researchers stated.
When first receiving the diagnosis, parents were hesitant to implement it, especially when children could still walk and when the family lived in a metropolitan area. In the case of children who were never able to walk, discussing the use of a wheelchair was a positive experience as it provided the possibility of independence.
The logistic adjustments were an additional source of stress for the parents. “This included the need for home and vehicle modifications, the financial implications of these changes, and social stigma,” the researchers said.
It was common for parents to struggle with the wheelchair even if the child was embracing it; this is probably because most parents thought that the recommendation came sooner than expected.
They also perceived the use of the equipment as a sign that their child was “giving up” or taking the “easy way.”
“Parents also worried that wheelchair use or transition from a manual to power wheelchair would deteriorate their child’s overall function and accelerate disease progression,” the researchers said.
Acceptance by at least one of the parents was essential in starting the process, even in cases of disagreement between the parents.
Seeing their children use the equipment and gain the independence it offered helped parents accept the use of a wheelchair and recognize its benefits. Parents who had difficulties carrying their child were also more likely to embrace the process.
“For some, early or part-time use of a wheelchair enabled the gradual introduction of the equipment to the family’s life, as well as time to plan changes required for full-time wheelchair use,” the researchers said.
Regarding the support of the healthcare system during the process, parents reported that having more time to test the wheelchair before choosing a specific model and having access to information from the health and school systems helped ease the process.
Parents perceived being included in the decision process as a positive factor, and felt that the healthcare professional took the specific goals of the family into consideration. They also “recognized a clear need for access to psychosocial care before, during, and after wheelchair prescription, and perceived psychologists and social workers as critical to identifying stressors and supporting coping,” the researchers said.
“This study has identified that the transition to wheelchair equipment is complex, with many factors contributing to parents’ readiness to engage in the process. Understanding and addressing these factors are essential for providing timely support and appropriate resources for families,” they concluded.