Did you know that “patient advocate” is an official job title at many hospitals? If you have a family member receiving inpatient care, a professional advocate can help you communicate with medical-center and insurance representatives. Advocates are trained to:
- Translate technical terms into lay language
- Answer questions about treatment options and patients’ rights
- Guide patients/families in completing paperwork
- Provide emotional support
Many hospitals also employ social workers to help with post-hospital plans and long-term-care options: these workers also provide advocacy and emotional support.
Advocates Close By
While it pays to work with your hospital’s advocacy professionals, it also pays to gather advocates of your own choosing. Getting specific needs met is frequently a matter of “persistence pays off,” and friends/relatives/acquaintances will be more persistent on your behalf than will most professionals with hundreds of requests to juggle.
And remember: sometimes the best advocacy is the kind that puts an arm around your shoulder and reminds you that you don’t have to take “we can’t do that” for an answer.
Resources All Around
If you need more help, there are resources for finding additional advocates—or finding tips on becoming a better advocate yourself. Check out:
- Caregiving.com, an online community which prioritizes (in their words) the “engaging and empowering” of family caregivers. The website has a library of materials covering everything from specific disabilities to household safety to fun family activities.
- Disability Rights Texas, which provides legal assistance and service referrals for people with disabilities.
- Texas Children’s Hospital’s Patient and Family Resources section, including the Family Advocacy page.
- Texas Parent to Parent’s Texas Network Connections program, where families can hire facilitators for help starting support networks.
- Texas Support Network, a nursing and therapy provider that emphasizes independence and person-centered care. (See their Disability Support Services and Elderly Care Services pages.)
Advocacy and AT
No BridgingApps article would be complete without assistive-technology (AT) app recommendations. Advocacy-relevant apps are those used for organization, record-keeping, and support-team communications.
- Among the most popular is MyChart, which keeps track of test results, appointments, patient-provider communications, medication history, diagnosis history, and health reminders. Access to the app and MyChart portal must be approved by a healthcare provider.
- Cristen Reat, BridgingApps Program Director, recommends CaringBridge for support-network communications: “Completely free and recently updated, CaringBridge is available as a web-based tool or mobile app. A helpful feature is the ‘circle of care’ which automatically distributes updates to multiple people. Each circle, and invitations to be part of it, is controlled by the caregiver or patient.”
What to Look for in a Support-Network App by Cristen Reat
Most important is that the support network be able to communicate with each other, as well as with the patient and/or caregiver. With a good group-access app, multiple supporters can:
- Use shared calendars to schedule visits—and to plan around others’ visits. A well-timed stream of visitors is better than five on the same morning and none for three days after.
- Join chats to compare notes and brainstorm ideas. (While this can also be done by group text, it’s more efficient to have it within a caregiving app.)
- Upload pictures to share with the care circle (particularly appreciated by out-of-town relatives and friends).
- Check on a patient’s mood and energy level. If there’s a day when the patient especially needs cheering up, the informed visitor can bring a favorite picture or treat. If the patient is exhausted, visit plans can be rescheduled.
Points for Caregivers to Remember
- Whenever possible, include the patient in advocacy conversations. If the patient can’t be there personally, bring a list of their questions and requests. Don’t just focus on what you think is best for them.
- Don’t let fear of “imposing on” others keep you from asking for help. If they care about you and the patient, they’ll want to be included.
- Recognize that you’re in this for the long haul, and advocacy is rarely a one-and-done thing. Pace yourself to conserve your energy.
- Make a point of personally thanking everyone who helps you.