As shown in
PRISMA flowchart of review process.
Participant demographics in included studies (n=7, reported in 10 papers).
| Study ID, first author, year, country, Aim | Sample characteristics (reflecting language used in papers) |
|---|---|
| 1. Andalibi, 2021, USA – reported across 3 papers:
a. Pyle, 2021, USA ( Aim: to investigate (non)disclosure of pregnancy loss among LGBTQ people to known ties on social media b. Lacombe-Duncan, 2022 ( Aim: informed by minority stress theory, to explore the experiences of multi-level stigma and resilience among LGBTQ+ people in the context of conception, pregnancy, and loss c. Andalibi, 2022 ( Aim: informed by an intracategorical intersectional lens, to uncover the benefits and challenges of LGBTQ-specific and non-LGBTQ-specific pregnancy and loss-related online spaces |
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| 2. Cacciatore 2011, USA ( |
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| 3. Peel, 2010, UK, USA, Canada and Australia ( |
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| 4. Riggs, 2020, Australia, USA and European Union ( |
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| 5. Rose, 2022, 2023, Australia and England – reported |
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| 6. Røseth, 2023, Denmark and Norway ( |
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| 7. Wojnar, 2007, USA and Canada ( |
Language used in the sample characteristics reflects the language used in the papers (e.g. use of people, parent, mother).
All were focused on pregnancy loss and/or baby loss; none were focused on earlier reproductive loss (such as assisted conception attempts that did not result in pregnancy), although study 5 noted these in addition to the perinatal losses being described. Loss-related language differed within the study aims, with three focused on pregnancy loss (studies 1,4,5), two on child bereavement or child death in the perinatal period (studies 2,6), and two using language referring to specific clinical circumstances (study 7: miscarriage, study 3: miscarriage, stillbirth and neonatal death). All were conducted in the Global North, spanning North America (studies 1,2,3,4,7), Europe (studies 3,4,5,6), and Australia (studies 3,4,5). Study 3 collected data via (online) survey methods and acknowledged this as a limitation in precluding ability to probe further. All other studies used semi-structured interviews: individual interviews (studies 1,2,4,5), couple interviews (study 6) or both (study 7); some in-person only (studies 2,7), some remote only (studies 1,4) and some using combinations (studies 5,6).
Three studies – which consistently used language that framed the participants as parents – were focused on lesbian mothers, either as individuals (study 2, unspecified whether these were gestational parents) or as couples (described in study 6 as birth mothers and biological mothers, and non-birth mothers and co-mothers, and in study 7 as birth mothers and social mothers). One study (study 3) focused on pregnancy loss in “lesbian and bisexual women”, using the terms “respondents” and “women” in the findings, but distinguishing in the aims and methods between participants who were “birth mothers” – described as those who had “physically experienced their loss(es) (i.e. carried the pregnancy)” - and “social mothers” or “non-birth mothers” as “the partner of the women who carried the pregnancy”. None of the four studies that were focused on lesbian mothers or on women specified whether participants were cisgender.
Only one study was focused on trans men and non-binary people (study 4). All participants were identified as people who had “undertaken at least one pregnancy following a gender transition”; the sample was not described as parents and the findings noted variation in whether participants spoke about pregnancy losses “as children”, with the term “gestational parent” reserved for the discussion section.
The two studies that were framed around “LGBTQ(+) people” (study 1 and study 5) both explicitly included cisgender and transgender participants. Study 1 distinguished in the methods between those who had “physically experienced pregnancy loss” and those “partnered with someone who physically experienced pregnancy loss”, also referred to in 1b as “non-gestational parents”. Study 5 distinguished in the methods between gestational and non-gestational parents. Both studies predominantly used the language of participants or people within the findings, with exceptions relating to “parenthood” or “becoming parents”.
Study 5 was the only study to report some participants having experienced perinatal loss both in gestational and non-gestational roles, and was also the only study to include perinatal loss experiences in the context of surrogacy.
Reporting of demographics characteristics was not consistent across the included studies. Diversity concerning race and/or ethnicity reporting was variable across studies, being evident in studies 1 and 5, and to a lesser extent 2, but minimal or absent in others (respectively 3 and 7), and unreported in 4 or 6. Some studies reported figures for socio-economic indicators including education (studies 1,2,3,7), religion (studies 1,2,5), and disability (study 7) sometimes noting a lack of diversity in respect of these characteristics as a limitation. Participant demographics are available in
All studies provided clear statement of aims and used methodologies and research designs that were appropriate to address the stated aims. Recruitment strategies generally relied on use of personal or research networks, social media and community organisations; mostly LGBTQ+ focused whilst some were specific to pregnancy or perinatal loss. Methods of data collection (including modality and duration) were provided for most studies and were appropriate (study 2 did not report whether these were in-person, which may reflect the study’s age). Ethical issues were considered appropriately. Data analysis was generally rigorous and built high trustworthiness, with detail provided to offer transparency of the analysis process, researcher reflexivity (which may include addressing direct personal experience (e.g. study 1) or collaborating with experts with lived experience (e.g. studies 2,4), use of member checking (e.g. studies 2,5,7), peer debriefing/discussion (e.g. studies 1,2,4,7). Such aspects were not documented in study 3, which was the only study to involve analysis of open-ended survey data. None of the papers provided
Thematic synthesis of the seven included studies generated one overarching theme -
Illustrative quotes from participants are indicated by the use of their identifier (where reported in the included study); illustrative quotes from the interpretation by the authors of included studies are indicated by ‘author interpretation’.
As depicted in
Thematic synthesis map.
For many LGBTQ+ people, perinatal loss represented not only the loss of their imagined future but also the loss of significant investments of emotions, time and finances in becoming pregnant.
This was described as intertwined with the grief and compounding it further:
‘the experiences of miscarriage and conception for lesbian couples were so intertwined that one cannot fully comprehend lesbians’ experience of miscarrying without understanding their difficulties conceiving’ (author interpretation) (
‘While most people who experience pregnancy loss share experiences of grief, this grief may be amplified and compounded for LGBTQ people, largely because of the increased effort involved with planning and achieving pregnancy.’ (author interpretation) (
For most LGBTQ+ people planning a pregnancy, a considerable amount of emotional work took place before conception was attempted. In choosing to pursue pregnancy, LGBTQ+ participants in the included studies reported that they had to consider multiple questions about how to try to conceive. Questions included who was going to carry the pregnancy and whose gametes would be used. Where additional gametes were required, questions included: whether to use known or unknown donors, which donor to select, what method of conception would be attempted, and when to attempt conception.
Where the person trying to conceive had a partner (or partners), discussing these decisions had included a significant amount of relational work, prior to attempting conception. Evident in the included studies were examples of the strengths accompanying this relational work.
‘The decision to pursue parenthood … involved several processes: self-reflection about whether it was right to pursue motherhood, reconciling their differences, locating a donor, finding a nonhomophobic provider, and … [was] often delayed by differences in partners’ readiness for pregnancy and fears of raising a child in a society that discriminates against nontraditional families.’ (author interpretation) (
For some trans men, non-binary folk and masculine lesbians, accessing care also involved being misgendered by fertility or perinatal services, adding to the burden placed on people:
Some trans men spoke of the risks involved when accessing medical help during a perinatal loss, including implications for their safety when ‘outed’ as transgender by requiring such care:
The emotional investment that accompanied decision-making was additionally accompanied by significant investment of time:
This included investment relating to the practicalities of attempting to conceive, regardless of whether conception was attempted at home or in a clinic:
Where this required leave from work, revealing the reason meant individuals had to disclose that they were trying to conceive:
Taking time off could be complicated not only for those who were pursuing or had been physically pregnant, but also for their partners and people using surrogates: this often meant not only disclosing pursuing parenthood, or indeed being expectant parents, but also potentially ‘outing’ themselves in relation to gender and/or sexuality and/or routes to parenthood, each of which could carry additional stigma:
In cases where perinatal loss and fertility treatments had to be taken as sick leave, or where LGBTQ+ people chose to take sick leave to avoid disclosure, the amount of time people felt able to spend recovering from a loss was sometimes compromised:
Financial investment relating to conception was identified across the included studies. These ranged from paying travel expenses or fees to a known donor, to clinic fees for intrauterine insemination (IUI) or
Financial investments and time investments were sometimes traded against each other – for example it could be cheaper to use a fertility clinic abroad, but this might require more significant periods of time away from work, or from older children. These decisions were also affected by the legal situation in the individual’s country. Additionally - as noted in study 5 – some experienced their loss in the context of a series of other reproductive losses, including cycles of conception attempts that did not result in pregnancy but nonetheless carried emotional, time and financial investments.
For some LGBTQ+ people, the investment required to achieve a pregnancy meant that the loss of the pregnancy was also the loss of their chance at biological parenthood:
Coming to terms with these multiple additional losses added complexity to the experiences of grief. These experiences, although common with cisgender heterosexual people utilising assisted conception, additionally required individuals and couples to navigate cisheteronormative services and systems during their bereavement:
Cisheteronormative norms often meant that LGBTQ+ people’s perinatal losses, their relationships and families were simply not recognised; nor were their accompanying emotional and practical investments. This lack of recognition also sometimes meant being unable to access resources that would be available to cisheterosexual couples, requiring further investment while dealing with perinatal loss:
The included studies showed that LGBTQ+ people looked for support from their friends, families, and from formal perinatal loss services, but their experiences of perinatal loss often remained invisible to those around them, or required additional work to make them visible. Some voiced invisibility as linked to an assumption that LGBTQ+ people will not attempt to become biological parents.
Invisibility led to the unintentional exclusion of LGBTQ+ people from support that would have been available to cisgender heterosexual people experiencing a perinatal loss. In LGBTQ+ communities and friendship groups, whilst parenthood is becoming more common, many people will not have children. For some, perinatal loss was therefore a subject which was less easy to discuss, and one for which there was less community experience of supporting:
Wider family were sometimes surprised to learn that perinatal loss had occurred, where they were unaware that their LGBTQ+ family member had been attempting to conceive. Some LGBTQ+ people spoke of not disclosing their loss to family or friends to protect themselves from discrimination when grieving. This was sometimes linked to others’ known or anticipated belief that raising children in anything other than a cisheterosexual couple was immoral or damaging to the child, and some individuals faced this kind of discrimination whilst grieving their loss.
Where LGBTQ+ people accessed support services specifically for perinatal loss, some found them to be cisheterocentric, which caused further distress:
Anticipating this, some who accessed support organisations for perinatal loss chose not to disclose their LGBTQ+ identity, which was sometimes accompanied by complicated and challenging feelings:
Others simply chose not to access support from organisations:
Having to educate people whilst trying to access support was difficult, and on the occasions where LGBTQ+ specific support was available, the ease of access was commented upon:
Others reported the importance of receiving inclusive care from healthcare professionals when access care in the context of loss:
However, for some LGBTQ+ people, their experiences and existence were marginalised, minimised or dismissed. This included by not being seen as grieving parents, or by the adults and existing or future children not being seen as a family. Evident within two of the included studies were examples of the importance – where applicable - of both people being addressed as parents.
‘Thus, being recognized as the baby’s parents was important, particularly for co-mothers, even if this meant being a parent of a dead child. Midwives’ active use of the word “parents” strengthened the couples’ understanding that they were in fact parents,
and in hindsight, they described how memories of these situations activated feelings of
tenderness and grief. … [and] helped to develop a couple’s parental identity.’ (author interpretation) (
Some LGBTQ+ people also experienced messages that the potential future child was not perceived as a child of value by the adults’ support systems or by society in general (study 2).
Study 1 found a lack of representation in online spaces for LGBTQ+ people of colour. Similarly, accessing appropriate in-person support was more difficult for people with multiple marginalised identities:
Indeed, a participant from that study had created a group for other Black people whilst navigating their own grief.
The included studies illustrated examples of people trying to make sense of their perinatal loss through creating meaning from what happened across the immediate experience of loss, the aftermath of the loss and the care received, and the time beyond. Meaning-making was sometimes specific to being a Queer body, and sometimes specific to being in a Queer relationship where future reproductive choices included a different range of options about routes to pregnancy than cisheterosexual people would have.
In the immediate experience and the aftermath, some LGBTQ+ people who had carried the pregnancy experienced complex emotions about their bodies. For some, there was a sense of ‘double failure’, as shame from internalised homophobia or transphobia interacted with shame related to perinatal loss. For others, the relief of being able to become pregnant affected their experience of grieving the perinatal loss.
For partners of people who physically experienced the loss, their feelings could be complicated:
There were examples of people in partner roles feeling particularly unsure about their role and expectations in the context of perinatal loss, as they tried to navigate their loss both as individuals and as couples. This could be further complicated for LGBTQ+ people who had not been exposed to experiences of others in similar circumstances or with shared identities, relationships or involvement of health services:
For other LGBTQ+ people, the paucity of legal options available when creating a family became part of how they made sense of their loss:
Findings from included studies were understood as indicating a re-writing of the future that they had begun to imagine, as parents and with hopes for their future child(ren). Making sense of this enforced rewriting included making decisions about whether to try to conceive again or not. For some LGBTQ+ people, making decisions about future attempts to have a child involved additional emotional labour, for example in revisiting questions of who will try to conceive and how they will do so (as discussed in Theme 1):
Additionally, positives were evident, with some participants using the experience of loss to create positive change for the future. Some wished to make sense of the loss by creating a legacy from their experiences. Sometimes, this was achieved by turning the loss into an educational opportunity, to prevent the same experience happening to another parent, or to normalise the experience of loss and grief. Experiencing poor care due to cisheterosexism was one area where LGBTQ+ people who had experienced a perinatal loss wished to focus educational activities to create a legacy from their experiences.