PROFILES

Case summaries of representative experience

Representative Experience

PROFILE — DETAIL

Internet Peer Support Community — SPALS

Online Peer Support | SPALS

Service Area: Change
Sector: Social support
Timeframe: 1995-2016
Affiliation: pro bono

Co-led the online peer support community SPALS.com (Subsequent Pregnancy After a Loss Support) from its inception, supporting thousands of bereaved parents world wide. Facilitated group discussion, enforced behavioural norms, and coordinated support group volunteers. Supported the group through its transition to a social media community.

BACKGROUND

Moving online in the early days of the internet, bereaved parents sought support from others on usenet/newsnet news groups such as misc.kids and alt.support.grief

Facing her first pregnancy following a loss, SPALS founder Sara Grimes decided to establish an email-based group for those seeking "subsequent pregnancy" — a pregnancy after having experienced the loss of a child.

PAIN POINTS

  • The public nature of posts on news groups made it easy to find a group — but also led to comments being "vandalized" by unsympathetic posters among the public.
  • The initial "email loop" established for SPALS changed daily as people joined (and some left) the group — necessitating a new solution

OUTCOMES

  • At its peak, SPALS supported an active group of nearly 500 posters
  • Members of SPALS joined the group from every continent except Antarctica — supporting thousands of individuals and families world wide
  • As an all-volunteer operation, with donated services and pro-bono administrative support, SPALS offered a free, confidential (among members) and safe haven
  • After over 15 years of email mailing list operation, a preference for even greater contact amongst members led to a desire to migrate discussion into Facebook groups

Consistent feedback from "graduating" members:

  • "This group saved my life."
  • "What an amazing, healing group of people."
  • "SPALS helped me restore my faith in myself."
  • "I will always remember this wonderful group."

RESPONSE

Joined Sara Grimes as co-administrator in the first days of list operation in December 1995, establishing SPALS as an email-based discussion group through a listserver.

  • Collaborated on all aspects of list administration. During the first three years dedicated 800-1,000 hours per year in list administration, in addition to full time consulting work — a level that declined after then due to maturity of the list, effective self-moderation by the members, and decreased demands for direct facilitation by the administrators.
  • Assumed solo list administration in 2002 when Sara stepped down as administrator following her second successful subsequent pregnancy.
  • Arranged hosting and mailing list management, generously donated by Osama Arafat of inforamp.net, later sold to iStar. After iStar itself was sold and in 2003 discontinued mailing list management, arranged for new mailing list hosting, generously donated by Eric Schnoebelen of cirr.com
  • Established and maintained list-related information on the website SPALS.com
  • Registered and added new subscribers, and removed departing subscribers. Subscribers applied to SPALS with a brief bio outlining their experience with loss(es) and optionally other family information — only those with personal pregnancy loss experience and seeking subsequent pregnancy were admitted to the group.
  • Maintained the Bio List — a member registry, recording changes to the bio information and providing a formatted exceprt of the list to members with member contact information.
  • Carefully monitored and facilitated list discussion, helping to de-escalate unintended conflict, and modelling ways of providing support even to those who might make or have made difference choices during pregnancy (for example, upon receiving an adverse diagnostic test result).
  • Maintained and promoted the SPALS Code of Conduct and Guidelines for member behaviour, including producing a regular SPALS Tips message reminding members of their obligations under the Code and Guidelines
  • Produced the Pregnant Members list, listing and tracking all members currently pregnant (facilitating discussion amongst members expecting at a common time).
  • Supported production of the Trying Members list, monitored and compiled by a volunteer, recording those members who voluntarily included themselves when trying to conceive (facilitating discussion amongst such members).

In 2011 when a group decided to migrate SPALS discussion onto Facebook, endorsed the migration, and continued to support admissions to SPALS on behalf of both groups, a requirement that eventually diminished for the Facebook group. Continued to operate the SPALS email list for veteran members of the group preferring to connect by email. In December 2017 discontinued active support of the email group.

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