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Dying Parent resource [Updated August 1]

An edu web resource for parents (of children under 18) with serious illness that covers end-of-life topics with a focus on legacy and family

Photo of Josh Benjamin

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Who is your idea designed for and how does it reimagine the end-of-life experience?

There's lots of good information on the web about end-of-life, but scattered about. There is no central resource for parents who are facing serious illness and have young children. The parent and their partner may be afraid and seeking more certainty online, and this site would be designed specifically for to transform that fear into peace and possibility.
  • How to talk to partner/kids; anticipatory grief + coping
  • How surviving parent can find support and help children thrive in development
  • Identifying friend to take on mother/father role and informing them of values and how to increase their interest in the child
  • Notes on grief - philosophy of sad vs bad and role of denial
  • Q+A/community, forum, Facebook group?
  • Fighting to live while accepting mortality
  • Collect and share legacy projects and letters from family/children as examples of what to write
  • Legacy services, software, books, etc
  • Link into American Cancer Society site resources when appropriate
  • Blog with expert articles
  • Pragmatics section: passwords, estate, advance care directive and deputy

Updated August 1:

The content would be developed by volunteer partners in the community who will "brain dump" what they know, solicit experts to create submissions, and moderate unsolicited submissions. Partners could be child grief support non-profits (there are many), and individual professionals from healthcare, therapy, and legal fields. The major topic tags will be Pragmatics, Communicating about EOL, Philosophy/Spirituality, and Lifestyle/Sentiment/Legacy. Geographically, the best way to find a local resource is Google, but the key value offering is guidance - educating people that such resources even exist. 

For community outreach partnerships, hospitals are an obvious choice. Religious centers as well, particularly given the altruistic focus on healthy childhood outcomes. To gather parents who have questions about EOL, a small spend can hire freelancers to engage in Twitter outreach. Sometimes a family in this situation will setup a GoFundMe page, which may draw community and be an intersecting point to engage caregiving around the child.

Caregiving is the thesis of the experience map. There's a pretty in-depth story to be garnered from a journalist/mother/patient named Dina Rabinovitch who wrote about her experience across years of treatments and recurrence. Dina's story brought to light the significance of interruption to routines like picking up / dropping off at daycare/school. By discovering this website through marketing collateral at the hospital, they would be guided to calendar their hospital stay and consider what family routines would be interrupted. They'd be informed in advance to make arrangements with a trusted caregiver who can commit to being there for the child in the years to come and guided on communication with the child. Upon their treatment, they can heal knowing their child feels cared for. This particular experience can apply to a cancer situation with even low-moderate mortality risk.

There's a decent amount of support groups, kid/family camps, as well as online resources for grief support after death (such as Single Fathers Due to Cancer), but very little targeting the dying parent and the spouse in the window before death, when there‚Äôs time to take action.

Outstanding question, is there a good reason for that dearth of resources? Is the time span generally too small? Are parents too overwhelmed, or preferring to "wing it", to seek out resources?

Parents of children under 18 will likely be under 60, and mostly under 50, which raises the question of whether it would be more effective to brand the website for parents with cancer, rather than parents with serious illness. Perhaps a medical professional can comment about if it there are other life-threatening cases that may affect a parent, and how common they are?

What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

Set up a simple SquareSpace site and solicit guests from content-rich sites (, etc.) to cross-post articles for the above sections. Track incoming Google search keywords and build additional content based on that. Ask hospitals to refer the site to patients, and track what content is popular.

What skills, input or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

Guidance on prioritizing the sections based on your experience and research
Contribute content for the site and introduce people who may want to contribute

Tell us about your work experience:

I have a technology background and am creating a company for parents to record messages for their children, have been researching end-of-life for 3 years, and volunteering with the UCSF Notes Project.

This idea emerged from

  • An Individual


Join the conversation:

Photo of Manal

Interesting concept, Josh! I would love to see this further developed as we reach the end of the Refinement phase. To have a good, solid idea - why don't you post a UX map or some images of what this website would look like? How will you develop your content? What sort of partners could you work with? I think there's great opportunity in connecting families sharing similar experiences perhaps through a social network. There's a lot of potential here, so do keep it up!

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