Priority 16 from the Neurodevelopmental Disorders Canada PSP
| UNCERTAINTY: How can families and caregivers be more involved and supported to make informed decisions that address their needs, preferences and priorities? (JLA PSP Priority 16) | |
|---|---|
| Overall ranking | 16 |
| JLA question ID | 0056/16 |
| Explanatory note | This question arose from families and caregivers wanting to be more informed and involved in making treatment decisions for their children and those they care for. In other words, how can researchers and healthcare providers work more collaboratively with families and caregivers to equip them with the information and support needed to to make treatment decisions? Family and caregiver perspectives are often excluded from research design and the assessment of interventions. This question also asks how we can support their participation in these other important decisions. |
| Evidence | None identified |
| Health Research Classification System category | Mental Health |
| Extra information provided by this PSP | |
|---|---|
| Original uncertainty examples | Are persons with autism served better if parents are allowed more freedom over the choice of therapies they want to pursue? ~ How can people with neurodevelopmental disorders and their families be involved directly in setting objectives for services provided? ~ How to sufficiently get parents to understand the options available to them such that they can make informed decisions? |
| Submitted by | Mostly family members/carers, also a few clinicians |
| PSP information | |
|---|---|
| PSP unique ID | 0056 |
| PSP name | Neurodevelopmental Disorders (Canada) |
| Total number of uncertainties identified by this PSP. | 63 (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website) |
| Date of priority setting workshop | 28 September 2017 |