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Community Guidelines

Community guidelines for the caregiver pace

This isn’t a community of saints and martyrs, we’re an amorphous collection of complex, imperfect, human beings who are a lot of other things besides people who support someone else’s mental or physical health.

The Caregiver Space is for anyone who performs care work for someone who has a critical illness, chronic illness, or disability — regardless of whether or not you identify as a “caregiver” or “carer.” You may provide care occasionally or 24/7. You may live with the person you support or you may live on a different continent. You may be a primary caregiver or the neighbor next door. You may be paid for providing care work or you might pay someone else to do it. You may provide hands-on ADL support or you might check in over the phone. You might be anticipating future care needs, in the middle of it, or thinking of your past experiences. You’re welcome here.

There is no clear divide between care givers and care recipients. Healthy relationships involve mutual support. Many people who provide care are themselves disabled and/or chronically ill. Our relationships and abilities change over time.

Care work is physically and financially demanding. The emotions of care work tap into everything else. There is no dividing our role as a caregiver from the rest of our life. Our specific situation changes the opportunities and challenges we face when providing care. We exist within systems and communities that impact our lives. The Caregiver Space focuses on our role as people who provide care, but we bring our whole selves to the community.

We all have the wisdom gleaned from lived experience and are experts in our own lives. We’re here to support each other as equals. The staff and moderators are members of the community, not people with special status. Many of our community members have credentials and professional experience, but we all come here as individuals looking to be part of a community.

The Caregiver Space was created by and for caregivers who didn’t feel welcome or safe in existing caregiver groups. We exist specifically to be a space centered on the needs of LGBTQ people, sex workers, religious minorities (including atheists), and non-traditional families. We don’t need to understand someone in order to know their inherent worth. We accept people for who they are right now.

This is a space to have authentic conversations about care work in all its complexity. While we aspire to celebrate more than we condemn, we are open and honest about all aspects of the care work experience.


Tell your own story

We want to know about you! Speak from the heart about your personal experience rather than relying on cliches. Tell us your story as one friend to another, rather than preaching or lecturing.

Remember that each of our situations is different, so it’s impossible to know what someone else should do based on what we know from a post. We can support each other, validate each other’s feelings and experiences, and share what’s helped us in similar situations. We can help each other tap into our own wisdom and problem solving abilities.

We each have our own experiences

Your experiences may be dramatically different than someone else’s. We encourage you to share your experience without judging others. Please don’t be antagonistic or sarcastic to those whose experiences have been different than yours. No one came here to be lectured or told they’re wrong.

“My experience has been very different from yours. When that happened to me…”

“That would never work for me, but what I find helpful is…”

Factual errors

The ultimate wisdom is kindness. You don’t need to agree or even understand in order to listen deeply and empathize with another person.

If you believe someone has made a factual error and you feel it’s important for them to have the correct information, simply share the correct information, along with the source.

“I recently read an article on the topic that said…”

“When I asked my doctor the same thing, she told me…”

Faith & wellness

We welcome people of all faiths (and no faith) and we ask that you do, too. We recognize that faith is part of many people’s lives and you’re always welcome to share your experience. However, this is not the place to ‘plant seeds’ for conversion.

This same guideline applies for diet and wellness. We encourage you to share the things that give your life your life meaning and ask that you hold space for people who find meaning in other ways.

Before posting something about your faith, ask yourself: Am I talking about my caregiving experience or am I trying to change someone’s mind?

Always welcome

Talking about finding strength in faith, attending services, turning to the scriptures for comfort, etc are all things you are welcome to share here. You’re free to share your personal experience.

Use your discretion

When posting requests for prayers, keep in mind that not everyone in the group prays.

“If you pray, I would appreciate your prayers…”

When letting a member know you’re praying from them, remember that some people have faced discrimination from people of faith and they may not welcome prayers. Please make it clear that your offer to pray for someone is coming from a place of love, respect, and support.

Not permitted

Please don’t post something that will make people who don’t share your faith feel unwelcome. Things like this make some people feel unwelcome:

“It has been my aim to guide them to look at life all around them and see the Creator God. Let’s care about Him by our expressed gratitude. He cares about us, so let us do the same for Him. The Lord deserves all honor and thankfulness. He is the Ultimate Caregiver!”

“We live in a country that wants to do away with true Hope!!! The only Hope that we have is truly found in Christ Jesus!! Now again, those all have a choice to agree or not. But for those who have hundreds of testimonials that Christ is alive and well, then only those few will get it! We are chosen from God the Father to have eyes ears to see the true magnificent of our Lord!!!”

If you are looking for a Christian caregiving organization, we encourage you to join Dave’s caregiving ministry.

Be honest, be yourself

Honesty is one of our core values. There is a tangible relief that comes from vulnerability and honesty. What’s more, you’ll likely find others who feel the exact same way. Hearing “me too” after being honest and raw is a remarkable and powerful way to heal.

We each have our own opinions and beliefs

Please refrain from debating or arguing member opinions, beliefs, or values that don’t align with your own. You can always agree to disagree!

“I feel very differently about that – work is such a big part of my identity…”

Religion and spirituality are an important part of many caregivers’ lives. Please remember that this site is for everyone. If faith is a part of your life, we love for you to share that. However, this is not the space to find new converts or make people feel unwelcome for believing something different.

It is entirely unacceptable to post anything that is hateful toward any religion or group of people.

Don’t be afraid to post

Writing your first post can be intimidating. Don’t be afraid to join an existing discussion. We are a welcoming and warm community. While we hope that you’ll become an active participant and join in our conversation, you’re always welcome to silently participate until you feel more comfortable posting.

Assume goodwill

We’re all here to be part of a supportive community. If you’re not sure of what someone’s saying, ask them to explain.

“Joe, can you clarify? I’m not sure if you’re saying…”

Please remember, if you can’t be kind, keep scrolling.

Privacy

Be thoughtful about what personal information you share online. Be aware of HIPAA (the Health Insurance Portability and Accountability Act) and other privacy laws when posting about clients or patients.

Get professional support when you feel suicidal

If you are thinking of hurting yourself or others please visit Befrienders Worldwide, which maintains helplines in over 40 countries.

If you see a post or comment expressing suicidal ideation, please urge the poster to get professional help.

We are a peer support community, not a place to get professional help in an emergency. If there is an emergency, immediately call 911, or call a hospital, local police, or contact a professional counselor immediately.

Be Respectful

Everyone is entitled to their opinion. Remember there is another human being who is likely experiencing some pain on the other end of the computer. We are here to support each other, not make caregiving harder.

 


Participation by researchers and professionals

Anyone who provides or has provided care is welcome to participate in our community as an individual.

We recognize that many people who have careers related to caregiving — from conducting research to running nursing homes — were inspired to choose their career based on personal experience.

However, we expect everyone to exercise professional ethics. Everything in the groups is private. Perhaps someone will say something you’d like to quote in an upcoming blog post — if so, let them know how you’d like to use it and get their explicit permission. Perhaps a conversation in the group will inspire your work, just as a conversation with a friend might. We expect you to work in ways to protect the privacy of our community and treat people with respect.

We have empathy for people, not brands. If you join the group as a “brand ambassador” and mine our groups for data, we will not respond with the principles of restorative justice. Restorative justice is for people, not corporations. We take all ethical violations by people with company, university, or government affiliations seriously.

Restoring our community as a safe space after a serious privacy violation requires much more work from each and every member of our community. It is not as simple as removing a comment or member from the group. Rebuilding trust takes time and dedication.

Members of our community are active in research about caregiving, the healthcare industry, and related startups. These people are valuable members of our community — and their awareness of work going on in the industry helps us keep our community safe from those lacking in scruples.

We do not allow our groups to be used for any sort of research. Our groups are a safe space where things are shared confidentially. Your intention to develop services or products to “help” caregivers does not make the act of violating the privacy of people in a support group ethical. If you think the best way to gather data on people is without their knowledge or consent, you should rethink your career and get professional help to address your lack of morals.

What’s unethical research?

Ethical violations by brand ambassadors are rare, but they do occur. Here’s an example of an attempt to utilize one of our groups for research that violates human subject research protocol and basic human decency.

One of our moderators saw this post on Reddit recruiting research participants for a survey:

Later, someone with the same name as one of the researchers posted a question in one of our private online support groups, posing themselves as an individual caregiver:

He failed to identify his university affiliation and his intention to use responses in research. He violated group rules by intending to use replies to his post as part of the data collection process, in violation of our privacy requirements. He also violated the rules of human decency by attempting to enter the safe space of a support group in order to secretly record and share things people said in private.


The views, opinions and positions expressed by contributing authors and those providing comments on TheCaregiverSpace.org or any of our services hosted on a third-party platform (like Facebook or Twitter) are theirs alone, and do not necessarily reflect the views, opinions or positions of The Caregiver Space, Inc. or any employee thereof.

We make no representations as to accuracy, completeness, timeliness, suitability or validity of any information presented by individual authors and/or commenters on our blog or site and will not be liable for any errors, omissions, or delays in this information or any losses, injuries or damages arising from its display or use.

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