Caregiver Selection Checklist

Many of us after learning of an EB diagnosis of a child must then take on the responsibility of becoming a primary caregiver for our loved one, either alone or with our partner or another family member. Sometimes, however, it becomes necessary to bring a third-party caregiver into the home. If you have not been faced with making such a decision before for another family member such as a parent or grandparent, it can be a daunting one.

Here is a brief list of suggestions to get you started as you pose questions of potential candidates and do your research:

  • Check with your physician or other specialists who are involved in your child’s care for any recommendations they may have.
  • Contact your local chamber about any medical facilities or caregiver organizations based in the area as another resource worth investigating further.
  • Ask friends or other family members who may have selected a caregiver for a relative in the past for some basic advice on making the selection, keeping in mind that their caregiver may not have faced the same types of challenges as an EB caregiver will need to endure.
  • Talk to other EB families online for their own input on selecting a third-party caregiver, such as here in the EB Resource forum or other online communities you may be a part of.
  • Reach out to other care experts for any other advice on the caregiver selection process such as the DebRA nurse, a national caregivers’ support network or contacts you may have at a medical facility where your loved one may have received care.
  • Ask the caregiver for references specific to working with those facing rare diseases and someone in your loved one’s age group.
  • Explain what you can about epidermolysis bullosa to the caregiver candidate and ask them to do some homework on their own about EB, arranging for a discussion a week later to gauge how well they understand what this disease will entail for the care process and the emotional toll it can take on the patient, the family members and the caregiver.
  • Request information specifically about wound care experience and background, and inquire about what wound care suppliers they are familiar with.
  • Ask for their expectations as a caregiver and be sure to communicate yours openly and thoroughly during the interview process.
  • Make a point for your significant other and any other family members involved in the care process to meet the potential caregiver and be involved in the interview process.
  • Give your loved one an opportunity to interact with the potential caregiver to not only see that candidate’s communication style and “bedside manner” but also to see your loved one’s own reactions to the candidate.
  • If your interview process is a positive one, suggest a trial basis of a few days or a week to test the new caregiver relationship.

These are just a handful of suggestions and by no means, a complete list. Perhaps you can offer some tips of your own for this selection checklist. What are some other key questions or areas of inquiry that you suggest to someone looking to hire a third-party caregiver for their loved one diagnosed with EB?

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