Family dynamics, the professional competencies of the therapist, the type of therapy, and environmental factors all can influence the likelihood that parents of children with cerebral palsy (CP) will adhere to occupational therapy (OT), a new study found.
The study, “Exploration of the Influential Factors on Adherence to Occupational Therapy in Parents of Children with Cerebral Palsy: A Qualitative Study,” was published in Patient Preference and Adherence.
OT is one of the main forms of rehabilitation therapy for children with CP. Its main goal is to improve the skills children need to engage in the normal “occupations,” or activities, of daily life. Such treatment can include self-care exercises, writing assistance, and play therapy, and has been shown to increase the quality of life and social engagement of disabled children.
Parents are usually responsible for any ongoing assistance the child may require to carry out OT activities, and play a pivotal role in therapy adherence. However, previous studies have reported that parents’ adherence to OT often is poor, for reasons ranging from financial constraints to unpleasant experiences with their children’s therapists.
Now, researchers at Kermanshah University of Medical Sciences, in Iran, in collaboration with colleagues in the U.S., sought to investigate which factors — from a therapist’s point of view — may affect adherence to OT. The team questioned occupational therapists who work with CP children and their parents to gather data on their experiences.
A total of 17 occupational therapists — eight men and nine women, with an average age of 34 and nearly a decade of experience — were interviewed between September and December 2018. All were university educated with bachelor’s or Master of Science degrees, and were working in the Kermanshah province in western Iran. All interviews were tape-recorded and the transcripts analyzed.
The analyses revealed four main categories of factors that could influence parents’ adherence to ensuring OT session attendance by their children. These were child and family-related factors, including the child’s disease severity; the professional skills of the therapist; environment factors, including insurance coverage; and finally, therapy-related factors, such as type and duration of the treatment.
The first category comprised child and family-related factors, including the clinical status of the patient and the family’s structure, according to the study results.
When a child’s clinical condition is more severe, the respondents said, parents are often less motivated to stick to the treatment suggested. This is likely because the chances of improvement seem smaller. The researchers found that motivational interviews and realistic goal-setting with the occupational therapist have been shown to improve adherence in these cases.
“I think the severity of the disorder is very important. Children with fewer problems are more likely to respond to treatment sooner and families are more likely to be encouraged to see their child changes in their treatment sessions and at work at home,” one of the therapists said.
Regarding family structure, the therapists said that the presence of grandparents and other family members could both have a positive and a negative effect on therapy adherence.
“The presence of other family members such as aunts and uncles, grandparents or even older children can be very helpful,” one therapist said. “They can take part in care of the child and increase the possibility of adherence to treatment. In fact, they can support the family.”
But family members also can be detrimental to adherence.
“I have worked [with] some parents who have had the high motivation to cooperate in treatment, but have complained about the intrusiveness of others,” one of the respondents said.
“One [parent] told me that [her] mother very much interfered with bringing [her] daughter to OT session,” this therapist said. In this case, the grandmother “believes it is futile” and says that the parent is “wasting your money.”
The second category of factors had to do with the professional skills of the therapist, including clinical competency, communication, and job satisfaction. These findings suggested that competent therapists who were able to communicate easily with both the disabled children and their parents, and were happy with their job, had better success in increasing therapy adherence among their patients.
The third category comprised environmental factors, including cultural views and insurance coverage. In this category, shorter travel distances and well-equipped OT clinics were found to be beneficial for adherence. In contrast, difficult access to healthcare due to insurance limitations and cultural taboos had a negative impact on therapy adherence.
The final category had to do with therapy-related factors, such as the type and length of the treatment. The overall perception among therapists is that interventions that involve play exercises, or that last long periods of time, had lower rates of adherence to OT. The therapists said parents did not view play exercises as beneficial.
“The families are not happy with the treatment,” one therapist reported. “They say that they can play with their children themselves.”
In contrast, exercise therapy had much greater adherence and was followed-up more at home, the therapists said.
The researchers said focusing on ways to address these four areas with parents should help improve adherence outcomes in future therapy sessions. Understanding why families and caregivers may be less motivated to stick to the children’s OT schedules may help in explaining to parents what the goals are and why the therapy is important.
This is especially essential since “poor adherence is directly associated with poor treatment outcomes,” the researchers said.
“Strategies should be implemented to improve adherence to treatment by encouraging the facilitators and inhibiting the barriers as described,” they concluded.