This document summarizes research on online support communities for those experiencing perinatal loss (miscarriage or infant death). It finds that these communities provide validation, a sense of shared experience ("griefwork"), and help maintain authentic identities. However, digital inequities exist and offline support is still lacking. The researchers aim to further characterize these online social practices and roles to better understand their benefits and potential shortcomings.

1. ‘We ARE Family’:
disenfranchised grief, griefwork
and perinatal loss
Gayle Letherby, Plymouth University
and Deborah Davidson, York University,
Ontario
(with thanks to Melanie Baljko, York and
Rohini Terry, Plymouth)

2. Introduction
• The Issue
• Existing Work
• Our Approach
• Findings and Stories
• Conclusions For Now

3. The Issue
• Perinatal loss; a definition.
• The loss of a pregnancy/death of an infant
causes profound grief, yet society often
minimizes/ignores this grief (e.g. Letherby 1993,
Frost et al 2000, Davidson 2008).
• A common response is ‘Never Mind, Better Luck
Next Time’ OR EVEN ‘WELL IT’S ALL FOR THE
BEST’ if the mother or the baby are seen as less
than ‘perfect’ OR as a solution to a problem if
the ‘time is wrong’.

4. The Issue
• Arguably formal support following the loss of an infant
improved immensely in the late 20th century not least in
terms of the griefwork that professionals participate in
(Davidson 2008).
• In addition the bereaved have always found ways to
comfort themselves, not least through personal writings
and involvement in face-to-face support groups –
although this is gendered.
• Disclosure to ‘others’ may involve the bereaved mother
and father in unwanted ‘emotion work’. OR /YET
• ‘Emotion work’ may be an attempt to maintain their
authentic selves in the context of lifecourse disruption
(Exley and Letherby 2001).

5. The Issue
• The internet provides new opportunities for accessing
and giving support.
• Inclusion, capital, and identity (including the self as a
reflexive project) (Cavanagh 2007).
• The development of virtual communities of care
(Chambers 2006).
• This suggests that those who have access to network
capital - the capacity to sustain networks in situations
where people are not always physically proximate – (see
Urry 2007 in a development of Bourdieu 1986) may have
an advantage when dealing with perinatal loss.

6. Existing Work
• Ethnographic studies, textual analyses and a recent online survey conducted by
Katherine J. Gold et al (2012) over a 1,000 women from various sites (primary focus
on miscarriage and stillbirth).
• - 18 countries represented, but most respondents lived in the US
• - respondents were overwhelmingly white, well educated and well ensured
• - 54% were stillbirths or losses over 20 weeks gestational age with the other 46%
being miscarriages or losses before 20 weeks
• - only half of women were in the first year after their loss and the rest had losses
ranging from one year to decades prior.
• Key themes arising from their analysis:
• not being alone – the comfort of a shared experience (identified by 78%)
• validation and safety – the internet as an acceptable and safe place to share grief
• internet ease and convenience – useful in terms of 24 hour accessibility and more
likely to meet those who have experienced similar online than in person
• moving forward – small nos mentioned hope and coping skills learned through
online participation.
• Plus: the need for leaders/facilitators of sites and for the presence of health
professionals and mental health professionals

7. Our Approach
• We already know that the social support via the internet that
individuals receive following perinatal loss can be beneficial. We are
building and extending on previous work in this area to explore:
• The extent these networks offer support, and how the benefits of
these communities might be accessed or deployed more broadly.
We seek to characterize the social rules followed, social practices
adopted, and social roles occupied within these online communities,
as online participants collectively undertake the ‘griefwork’, or the
labour shared and negotiated by grieving women and others. . .
• Yet we are aware of:
– Digital stratification.
– The fact that support via the internet has possibility for harm as
well as benefit. . .

8. Our Approach
• We accept that netography, ‘in which the netographer participates online
with community members. . . clearly fits into the human subjects research
model’ and thus we have to consider ‘privacy, confidentiality, appropriation
and consent’ (Kozinets 2009: 141/2, see also Association of Internet
Researchers 2002).
• Although not communicating with participants, when quoting from sites we
will not use online pseudonyms (not least because individuals may disclose
information linking their pseudonym and real name) nor will be directly quote
material (as this can be easily traced back using a public search engine).
• Further in presenting data we are (sometimes) using what others have
called ethnographic fiction (e.g. Frank 2000, Inckle 2010).
• We will offer each of the sites we observe a written report at the end of the
research.
• We will acknowledge the significance of our auto/biographical approach in
our analysis and write-up (e.g. Letherby 2003, Rothman 2007).

9. Findings and Stories
• Some examples:
• Mommies Enduring Neonatal Death (MEND) is a Christian, non-profit
organization that reaches out to families who have suffered the loss of a
baby through miscarriage, stillbirth, or early infant death.
• SANDS: as well as supporting mothers and fathers, we are also able to
help other members of your family especially grandparents and other
children.
• Unspoken Grief is a safe space to share, talk, support and learn about the
impact of miscarriage, stillbirth and neonatal loss in our lives. A grief and
journey that is often underestimated which can cause women, partners,
families and friends to feel silenced – invisible.
• When no one else is there, whatever time of night, what ever day it is,
Infertility Network UK is there. Even if you don’t want to talk you can post
on the forum and know within a few hours someone will read and respond
where they can.
• In these last two, like many others, there is reference to AGENCY, to
activity, to griefwork.
• Some sites also have advocacy aims e.g.: Tommys: We believe every
parent has the right to a healthy pregnancy and baby. Our target is to halve
the number of babies that die during pregnancy or birth by 2030.
• Some also have a commercial aim: Remembering Our Babies – which has
a memorial keepsake boutique.

10. Findings and Stories
SOME (compilation) STORIES (analysis ongoing):
Used largely by women, rarely fathers and grandparents
but some:
• From Fathers and Grandmothers
• Mothers (focus here on support or lack of it from family
and friends).
Each is a combination of at least two people’s story and
some identifying facts and events have been changed.
False names are used throughout.

11. Conclusions For Now
• The sites validate the status and the grief of mothers, fathers,
grandmothers and others.
• Clear from the postings that ‘griefwork’ with similar others is useful –
they feel able to ‘confide’ and value not having to put on a ‘brave
face.’ So, it seems this griefwork is valuable, not least in attempting
to maintain an ‘authentic self’. As much support seems to be
derived by those responding to posts as well as those posting them
– an important part of the loss journey?
• Further evidence of collective griefwork and ‘solidarity’: shared
language across sites (e.g. angel babies and rainbow babies) and a
strong conformity in the way women (and others) respond to posts,
endorsing each others’ feelings. Further analysis needed here –
what happens to those who disagree?
• Yet, it would appear that this support is not enough - individuals still
feel the loss of family/friends understanding. . . .

12. References
• Bourdieu, P. (1986), ‘The Forms of Capital’ in J. Richardson (ed.)
Handbook of Theory and Research for the Sociology of Education
New York: Greenwood Press.
• Capitula, K. L. (2004) ‘Perinatal loss online’ The American Journal of
Maternal/Child Nursing 29(5): 305-311.
• Cavanagh, A. (2007) Sociology in the Age of the Internet
Buckingham: McGraw Hill.
• Chambers, C. (2006) New Social Ties: Contemporary Connections
in a Fragmented Society Houndsmills: Macmillan Palgrave.
• Davidson, D. (2008) ‘A Technology of Care: Caregiver Response to
Perinatal Loss’ Women’s Studies International Forum 31(4): 278-
284.
• Exley, C. and Letherby, G. (2001) ‘Managing a Disrupted
Lifecourse: issues of identity and emotion work’, Health 5:1 112-
132.
• Frank, K. (2001) ‘“The Management of Hunger”: using fiction in
writing anthropology’ Qualitative Inquiry 6:4: 474-488.

13. References Cont.
• Frost, J., Bradley, H., Levitas, R., Smith, L., & Garcia, J. (2007) ‘The loss of
possibility: scientisation of death and the special case of early miscarriage’
Sociology of Health & Illness 29(7), 1003-1022.
• Gold, K. J. Boggs, M. E. Mugisha, E. Palladino, C. L. (2012) ‘Internet
Message Boards for Pregnancy Loss: who’s on-line and why?’ Women’s
Health Issues 22:2: 67-72.
• Inckle, K. (2010) Telling tales? Using ethnographic fictions to speak
embodied ‘truth’ Qualitative Research 10:1: 27-47.
• Kozinets, R. V. (2009) Netnography: Doing Ethnographic Research Online
London: Sage.
• Doing Ethnographic Research Online London: Sage.
• Letherby, G. (1993) ‘The Meanings of Miscarriage’ Women’s Studies International
Forum 16:2: 165-180.
• Letherby, G. (2003) Feminist Research in Theory and Practice Houndsmills: Open
University.
• Rothman, B. Katz (2007) ‘Writing Ourselves in Sociology’, Methodological
Innovations Online 2(1): unpaginated.
• Urry, J. (2007) Mobilities Cambridge: Polity.