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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

Written by

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’s 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 (SevenPonds.com, 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

13 comments

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Photo of Manal
Team

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!

Photo of Cheryl Dolabany
Team

Josh, I was glad to get your response. Best of luck with your project, it's an important one.

Photo of OpenIDEO
Team

Welcome to the Refinement phase Josh! Here are some key questions and milestones we encourage all idea teams to consider in the Refinement phase:

1. How might this idea address the unique needs of the target audience you're designing for?
2. Clearly summarize the value offering of your idea in 1-2 sentences
3. Communicate your idea in a visual way with user experience maps http://ideo.pn/UX_Map
4. Identify assumptions that need to be answered in order to validate your value offering: http://bit.ly/1Oi8ZHu
5. Collect feedback from potential partners and users to answer the assumptions you’ve identified.

Lastly, here's a useful tip: When you update the content of your post, it'd be helpful to indicate this in your idea title by adding an extension. For example, you can add the extension " - Update: Experience Maps 07/12" to you idea title. This will be a good way to keep people informed about how your idea is progressing!

Photo of Torrie Fields
Team

Hi Josh, very interesting idea. I work with a lot of patients who seek very aggressive treatment when they have serious illness because of having small ones at home. Preparation and a guide is vital.

It reminds me of Randy Pausch's end of life wishes he shares in The Last Lecture. He chose more treatment so that he could live long enough to get affairs in order for his children. 

I think your idea is good, but your approach is a bit too philosophical to be useful. Think through what tactical things might be good for families left behind. For those children I counseled who'd lost their parent, they benefited most from art, activities, lists, and more concrete things to do, rather than narrative and stories.

Photo of Josh Benjamin
Team

Great feedback Torrie Fields  -- yes it seems some parents choose aggressive treatments in order to squeeze even a few months more for their childrens' sakes. I'd love to hear more about your experiences with child grief counseling, and also how has the child's age factored in?

Photo of Cheryl Dolabany
Team

I think this is a great idea for parents losing a child under 18 as well. Maybe on  a different site. No one needs comfort, community and understanding than people who have lost a child. I did think of a couple of topics that may be added. Dealing with suicide, drug overdose and murder.. Also the concept of acceptance.  I love the idea of a website where people can go at 2 am when they might be at their worst. Thanks for the great idea.

Photo of Josh Benjamin
Team

Hi Cheryl, thank you for this perspective about parents losing a child. It would be good to learn what challenges parents encounter in finding resources in those situations.

I think it would be valuable to have resources available and targeted to the surviving parent for suicide, drug overdose, violent crime, also car accidents - DUI especially. Lots of emotions there for the bereaved.

Photo of Sarah White
Team

Hi Josh, 

Reading about your idea made me recall a This American Life Episode I listened to a couple weeks back which highlighted the challenges of discussing end of life with children and teens. Just wanted to share in case you hadn't come across it!

http://www.thisamericanlife.org/radio-archives/episode/557/birds-bees?act=3

Best wishes, 

Sarah

Photo of Bahenda Joseph
Team

Hello Josh Benjamin,

I trust that your idea may contribute a lot to overturn the fear of losing a beloved one to the hope for the better.
On the other hand, I think the Counseling psychology also deals with this topic, hence someone from this field may give you a helping hand in order to enrich your website. Some other organizations also deal with similar topics. One example is the Dutch 113Online that deals with suicide matters (https://www.113online.n). Partnership? Further research? it will be up to you to decide. I believe though that if you emphasize on what makes your idea unique you will be able to bring something new and relevant for those who might need your service.

Photo of Josh Benjamin
Team

Thank you for your thoughtful comment Bahenda Joseph - I agree it would be great to collaborate with a counselor, in particular someone with relevant expertise - hospice, bereavement, child development, etc.

Photo of Cheryl Dolabany
Team

Losing a parent is one of the most difficult things a person can go through. I love your idea and I really think it would really benefit people. Something like this would let people cope in a way that works for them in their own time and a place to find understanding and support. 

Photo of Lynn Lambrecht
Team

Beautiful Josh, such an inspiring post! 

Photo of OpenIDEO
Team

Hi Josh, interesting post! Any chance you could find an image to go along with it? Images help grab attention and tell a story. You should be able to use the Edit Contribution button on the top of your post and follow the instructions to add images from there. Looking forward to seeing more of your inspiring insights on OpenIDEO.