Caregivers virtual support group informed consent and house rules

Informed Consent

The Immune Deficiency Foundation (IDF) offers a wide array of educational presentations, and in addition, IDF hosts peer group support, which may be guided by a group facilitator who may or may not hold health care credentials. The views and opinions expressed by group facilitators do not necessarily reflect the views and opinions of IDF. Any comments presented by the facilitator during the group are not medical advice, nor is it intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with questions concerning a medical condition. Never disregard professional medical advice, or delay seeking it based on information presented during the event.

I hereby consent to participate in IDF, Caregivers Virtual Support Group. I understand that Virtual Peer Support Services involve the use of telecommunication technology (which often includes the use of interactive audio, video, or other electronic media) to offer caregivers support with specific challenges, access to community resources, and to develop a positive network of peers. With this understanding, I voluntarily acknowledge and consent to the following:

1. I understand that the Virtual Peer Support Services facilitator’s role will be limited to helping guide group participants to a healthy and supportive discussion regarding the needs associated with being a caregiver of a person in the PI community. Though I may be indirect, virtual contact with the facilitator (who may or may not have a health care credential), the Virtual Peer Support Services do not provide any medical or healthcare services or advice including, but not limited to, emergency or urgent medical services, and my physician and/or other health care providers remain solely responsible for my medical and mental health care and associated outcomes.
2. I understand that I have the right to withdraw consent at any time without affecting my right to future care, services, or program benefits to which I would otherwise be entitled.
3. I understand that there are risks, benefits, and consequences associated with Virtual Peer Support Services, including but not limited to, disruption of transmission by technology failures, interruption and/or breaches of confidentiality by unauthorized persons, and/or limited ability to respond to emergencies.
4. I understand that there will be no recording of any of the online sessions by any party. All information disclosed within sessions relative to the sessions is confidential and may not be disclosed to anyone without written authorization, except where the disclosure is permitted and/or required by law. To maintain confidentiality, I will not share my Virtual Peer Support Services meeting link with anyone unauthorized to attend the meeting.
5. I understand that I must abide by the “House Rules” for Virtual Peer Support Services (See House Rules below)
6. I understand that IDF is not providing health care services, and certain privacy laws pertaining to covered entities do not apply, but the Virtual Peer Support Services will observe applicable privacy laws that protect the confidentiality of participants unless an exception to confidentiality applies (e.g., mandatory reporting of a child, elder, or vulnerable adult abuse; danger to self or others; I raise mental/emotional health as an issue in a legal proceeding).
7. I understand that if I am having suicidal or homicidal thoughts, actively experiencing psychotic symptoms, or experiencing a mental health crisis that cannot be resolved remotely, it may be determined that Virtual Peer Support Services are not appropriate and a higher level of care is required.
8. I understand that my assigned Virtual Peer Support Services facilitator may need to contact my emergency contact and/or appropriate authorities in case of an emergency. Virtual Peer Support Services are NOT emergency services and in the event of an emergency or if you experience any urgent medical symptoms or conditions, use a phone to call 911.

Caregivers Virtual Support Group House Rules

• Virtual Peer Support Services are for adult (18 years or older) caregivers only. 
• Person in care shall not be in the room where caregivers receive Virtual Peer Support Services. 
• Respect anonymity and confidentiality during the discussion in the Virtual Peer Support Services. 
• Be supportive of other caregivers’ views. The discussions are meant to stimulate conversation, not conflict. Let others have their say, just as you may.  
• Caregivers should not record conversations during Virtual Peer Support Services.   
• Caregivers shall not make any defamatory, abusive, profane, threatening, offensive, or illegal communications, which are strictly prohibited. Do not say anything that you would not want the world to hear or that you would not want anyone to know came from you. 
• Respect fellow caregivers’ privacy.  
• Caregivers will limit disclosure of confidential health information during the Virtual Peer Support Services to a discussion of the challenges they face providing care to a child with SCID. 

Virtual Peer Support Services Etiquette 

• Test your technology before the meeting and resolve any technical issues. 
• Use technology with audio-video clarity and stability. 
• Do not multi-task (do other work) during the Virtual Peer Support Services. 
• Follow an organized line-up to ensure each person has a chance to respond. 
• Find a quiet, private space to participate in the Virtual Peer Support Services. 
• Turn on your video whenever possible and be camera-ready. 
• Use the mute button at your site to prevent transmitting background noise. 
• Speak up to get attention if you have something to say.