Patient Autonomy
An important aspect of transition of youth with special health care needs involves the assessment of patient autonomy. Family members are often heavily involved in a youth with special health care needs’ care. As the patient ages towards adulthood, it can at times be overlooked that the patient is still reliant upon others for basic medical and self-care management. Patients should be encouraged to develop as much autonomy as they are capable, and in cases in which patients are not able to achieve full autonomy, it should be decided who will continue to provide support in the patient’s life as they transition to adulthood. Assessment of patient autonomy involves examining various aspects of the patient’s life, including:
Medication management
- does the patient know the name of his/her medications
- does the patient know what the purpose of each medication is
- is the patient able to administer his/her own medications
- does the patient know what to do if running out of a medication
Self-care/management of disease
- can the patient list their medical problems
- do they understand the warning signs of exacerbations or when they are getting ill
- does the patient know how to use all medical devices that he/she requires
- if the patient requires that certain procedure be done on a regular basis, can they perform them without assistance (such as self-catheterization)
Navigating the medical system
- Does the patient make his/her own appointments
- does the patient know what role is medical specialist has and who to call when problems arise
- Does the patient know how to file insurance claims, determine if insurance covers a procedure/appointment
Finances and living
- Will the patient have an income
- Does the patient know how to budget expenses
- What are the patient’s plans after finishing high school
- Does the patient have a job
- Is the patient able to perform activities of daily living and are there any limitations (grocery shopping, cooking, personal hygiene, eating, ambulating)
There are many assessment tools available to evaluate a patient’s autonomy. Often both the patient and his/her current caretaker are surveyed to assess autonomy. Below are some examples of checklists:
Health Management Checklist for Parent and Caregivers
Provider: Health Management Checklist
Additionally, questions can be incorporated into the patient’s visit with his/her physician. Examples include asking the patient rather than the caregiver to list his/her medications, asking the patient to give examples of warning signs when he/she should seek medical attention.