PRACTICAL TIPS FOR FAMILIES AND CAREGIVERS
Caring for someone with a spinal cord injury can be challenging, especially at first. In this section, we share practical tips to help families navigate healthcare conversations, find support, and take care of themselves as caregivers. These suggestions come from healthcare experts and experienced SCI families.
Communicating with Healthcare Professionals
Be present at care meetings if possible. Hospitals often have team meetings or family conferences where the whole team discusses progress and plans. Attend these when you can. It’s a chance to hear everyone’s perspective and ask multidisciplinary questions (like how does the therapy plan align with the medical plan, etc.). Designate a primary communicator. If there are multiple family members, decide who will be the main point of contact with the medical team to avoid confusion. That person can then update others. You can, of course, all be involved emotionally, but having one voice for decision- making discussions can streamline communication.
Effective communication with doctors, nurses, and therapists ensures better care for your loved one. Here are some strategies: Ask questions – and don’t be shy about it. If you don’t understand something, ask the doctor or nurse to explain in plain language. Medical staff may use jargon unintentionally; it’s okay to say, “Can you clarify what that means for me?” Keep a running list of questions on your phone or a notebook so you remember them during rounds or appointments. Keep notes or a journal of medical information. Especially in the hospital, you’ll receive a lot of information. Write down key points from conversations with the medical team – for example, the plan for the day, medications and dosages, or precautions to follow. This not only helps you remember, but also provides a record you can refer to later. Some families find it useful to maintain a binder with sections (for therapy notes, doctor’s notes, contacts, etc.).
Build rapport with the staff. Learn the names of the nurses and
therapists; a friendly working relationship can go a long way. Don’t hesitate to share a bit about your loved one’s personality and preferences – it helps staff see them as a person, not just a patient. For example, telling the nurses “He loves football and would appreciate catching the match on Sunday if possible” humanises the care.
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