The involvement of parents in healthcare decisions where adult children are at risk of lacking decision-making capacity: a qualitative study of treatment decisions in epilepsy.
Parent-proxies of adults with ID and epilepsy typically block treatment changes, so clinicians rarely pursue modifications even when potentially beneficial.
01Research in Context
What this study did
The team talked to mothers of adults who have both intellectual disability and epilepsy.
They asked how moms and doctors make choices about seizure medicines.
The talks were recorded and studied for common themes.
What they found
Moms usually said no to any change in seizure drugs.
Doctors often dropped the idea instead of pushing for change.
The adult child’s own wishes were rarely part of the talk.
How this fits with other research
Cramm et al. (2009) asked agency directors the same question. Directors said the client’s own voice should come first. The moms in Capio et al. (2013) did the opposite—they spoke for their child.
Adams et al. (2024) show families now use supported decision-making. They bring in trusted helpers and tech aids so the adult with ID can take part. This newer model moves past the parent-block pattern seen in 2013.
Hatton et al. (2004) remind us that epilepsy is very common in adults with ID. High prevalence makes these drug-choice moments happen often in your caseload.
Why it matters
If you serve adults with ID and epilepsy, expect parents to resist med changes. Come prepared with simple visuals or voice recordings that help the client show their own choice. Use the supported decision-making tools from Adams et al. (2024) to shift the talk from “mom says no” to “client says yes or no.” This small step keeps the adult’s rights in the room and can open the door to better seizure control.
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02At a glance
03Original abstract
BACKGROUND: Patients with intellectual disabilities (ID) receive health care by proxy. It is family members and/or paid support staff who must recognise health problems, communicate with clinicians, and report the benefits, if any, of a particular treatment. At the same time international and national statutes protect and promote the right of people with disabilities to access the highest attainable standards of health on the basis of free and informed consent. METHODS: To consider the role of parent-proxies in the management of epilepsy in adult children with ID who are at risk of lacking capacity to make decisions about their health care we interviewed 21 mothers. FINDINGS: These mothers are not pursuing changes in treatment that might improve their son or daughter's epilepsy, nor are they willing to countenance changes in treatment. Clinicians concerned to build and sustain therapeutic alliances with these mothers, our evidence suggests, may well avoid going against their wishes. DISCUSSION: Our research highlights the interactional contingencies of a hitherto neglected three-way clinical relationship comprising parent-proxy, an adult at risk of lacking decision-making capacity, and a treating clinician. This is a relationship, our findings suggest, where little importance is attached to either patient consent, or involvement in treatment decisions.
Journal of intellectual disability research : JIDR, 2013 · doi:10.1111/j.1365-2788.2012.01556.x