Serious illnesses and medical emergencies impact a patient’s entire family, especially when they must travel to receive care. When traveling with a patient, family and friends often find themselves removed from their communities and support networks. Far from home, not all of these caregivers are eligible for hospital hospitality homes such as the Ronald McDonald House or Hope Cancer Lodge. Often caregivers have to stay in hotels close to the hospital, a lodging choice that becomes increasingly expensive as their loved ones spend more time receiving care. Family and friends of patients need a way to find lodging that allows them to provide comfort and support for their loved ones without creating an additional financial burden. In addition, family and friends themselves need a nurturing environment so they can do the challenging work of caregiving. 

That’s where you come in. Being a volunteer host is giving an incredible gift to people when they need it the most. By following these simple guidelines, you’re setting yourself up to create a compassionate environment for patient families traveling for medical care.  

  • Don’t be afraid to talk to your guest. It is better to say, “I don’t know what to say” than to stop talking out of fear. ​​​​​
    • Here are some options to help show your care and support 
      • I’m sorry this has happened to you 
      • If you ever feel like talking, I’m here to listen 
      • What are you thinking of doing, and how can I help? 
      • I care about you and your well-being 
      • I’m thinking of you 
    • Here are examples of phrases that are unhelpful 
      • I know just how you feel 
      • I know just what you should do 
      • I’m sure you’ll be fine 
      • Don’t worry 
      • How long does your loved one have? 
         
  • Sometimes your guests will want to talk, and sometimes they won’t. Meet them where they are and follow their lead. If they want to talk use active listening skills. Seek to understand, and not to be understood. 
     
  • Think of yourself as a peer when you interact with your guest. Research has found that frequent, affirming, and pleasant contact from a peer supporter has been especially helpful to those experiencing social isolation and emotional distress. By supporting the physical need of housing you’re providing indirect financial support, and by interacting with your guest providing social and emotional support.  
     
  • Never press for information. It can be physically and emotionally tiring to repeat the same information to different people.  
     
  • It’s tempting to want to share similar experiences, but this can sometimes cause family members undue stress. Your experience isn’t the same as their experience. Resist the urge to share your similar story, especially if your experience was negative. Avoid statements like “My father had the same condition as your brother. He passed away from complications after 10 days in the same hospital…”. Or “A neighbor’s daughter has that condition too, she’s had 32 surgeries, and she’s only 8 years old.” 
     
  • Don't focus on your own worries and sadness about your guests’ diagnosis. The guest or caregiver shouldn't feel like he or she has to take care of you. Instead, offer strength, humor and practical help. 
     
  • This is an emotionally challenging time for many families, and they often will be dealing with a range of emotions such as sadness, grief, or even anger. All of these feelings are okay, and these feelings aren’t for you to fix. 
     
  • It’s also okay to talk about other topics. If appropriate, ask about interests, hobbies, and other topics not related to the health condition. People going through treatment sometimes need a break from talking about the disease. 
     
  • Privacy is important, do not share any information about your guests with others, unless they give you permission to share. Do not post pictures or tag guests on social media without their permission.  
     
  • Each host will have different house rules. Make sure to review these with your guests at the onset of their stay and orient them to your home. Being in a hospital setting can be unsettling and create feelings of insecurity. Setting expectations and clarifying roles reduces uncertainty and will help create an environment of support and security. 
     
  • If you have any questions, come across a situation that makes you feel uncomfortable, or can no longer be a host, don’t hesitate to reach out to a member of the Hosts for Humanity team. Just like you’re there for your guests, we’re here for you. You can contact us directly at info@hostsforhumanity.org.

References 

http://www.ipfcc.org/bestpractices/global-evidence-for-peer-support.pdf 

Conversation with Dr. Giora Netzer – pull from principles of his paper here:  http://www.learnicu.org/SiteCollectionDocuments/Guidelines-Family-Centered-Care Neonatal-Pediatric-Adult-ICU.pdf 

http://www.learnicu.org/Docs/Guidelines/ACPFamilyCaregivers.pdf