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Evidence-informed, best-practice recommendations concerning bereavement photography following stillbirth have yet to be proposed.
Background
Previous research has highlighted the general importance of memory-making following pregnancy loss; however, scarce studies have specifically examined bereavement photography experiences.
Aim
To examine parents’, healthcare professionals’ and photographers’ perspectives and experiences of stillbirth bereavement photography.
Methods
Guided by JBI Collaboration methods, we conducted a systematic review and meta-synthesis (using a meta-aggregative approach) of 12 peer-reviewed studies conducted predominantly in high-income countries
Findings
Two overarching synthesised findings were generated: Bereavement photography as a helpful tool for the present and Bereavement photography as a helpful tool for the future. The proactive recommendation of memory-making influenced parents’ decisions, and some parents not offered bereavement photography post-stillbirth expressed their desire for this opportunity retrospectively. Most parents who utilised bereavement photography were positive about their experiences. In the acute stages of loss, photographs supported meaningful introductions of the baby to their sibling(s) and validated parents' loss. Longer-term, the photographs validated the stillborn child’s life, maintained memories and enabled parents to share their child's life with others.
Discussion
Bereavement photography appeared beneficial, even though some parents felt conflicted about it. Parental views about photography appeared to fluctuate; many parents who rejected the offer of stillbirth photography described regret about their decision later. Conversely, parents who reluctantly accepted photographs were grateful.
Conclusion
Our review shows compelling evidence that bereavement photography should be normalised and offered to parents in the wake of stillbirth, with tactful, personalised approaches needed to assist with bereavement.
Evidence-informed, best-practice recommendations concerning bereavement photography following stillbirth have yet to be proposed.
What is already known
Research suggests parents’ experiences within the hospital environment have a significant impact on decision-making in the context of after birth care, and memory-making practices can be beneficial following stillbirth.
What this paper adds
Insight into parents’ and health professionals’ experiences of stillbirth bereavement photography. ecommendations for future practice, including strategies for clinicians to sensitively recommend, advise and implement bereavement photography services for grieving parents.
1. Introduction
In Australia, six babies a day, or approximately two thousand babies annually, are stillborn [
Flenady V., Oats J., Gardener G., Masson V., McCowan L., Kent A., et al. for the PSANZ Care around the time of stillbirth and neonatal death guidelines group. Clinical Practice Guideline for Care Around Stillbirth and Neonatal Death. Version 3.4, NHMRC Centre of Research Excellence in Stillbirth. Brisbane, Australia, January 2020.
]. Hence, research has investigated how parents might manage these challenges. One such process is memory-making, which research suggests may help parents make sense of their loss and cope with their grief [
]. These tangible keepsakes appear to serve a powerful purpose for bereaved families, representing sources of comfort, as well as validation of the baby as an important family member [
Notably, research suggests that parents' experiences within the hospital and interactions with healthcare staff influence their decision-making concerning after-birth care following stillbirth – including photography and other memory-making activities [
]. Additionally, while all forms of pregnancy loss can be deeply painful and have significant psychosocial impacts, many parents who have experienced stillbirth express feelings of invalidation by others, including health professionals [
]. As such, understanding parents’ experiences of memory-making in hospital following stillbirth is important in order to ensure healthcare professionals provide appropriate education and preparation for post-birth care, and are trained to do so in ways which will promote parents’ wellbeing.
In this review, we focus on synthesising what is known about parents’, healthcare professionals’ and photographers’ perspectives and experiences of one aspect of stillbirth-related memory-making - bereavement photography. By elucidating experiences of bereavement photography, recommendations can be made for best-practice approaches to facilitate empathetic and practical care for parents following stillbirth.
2. Methods
2.1 Design
Guided by JBI Collaboration methods, we conducted a systematic review and meta-synthesis using a meta-aggregative approach. Meta-aggregation of qualitative studies complements quantitative evidence by comprehensively exploring a person’s experience and perspective on an issue or treatment [
]. This approach differs from other strategies for qualitative synthesis in that it does not seek to reinterpret the original authors' findings but combines findings to generate a rich understanding of a topic or intervention. This method is valuable in addressing questions about healthcare procedures and making relevant and beneficial recommendations for future practice [
]. Using this approach, researchers identify key findings from eligible existing qualitative studies in the form of statements or themes and metaphors; these findings are then collated into categories based on similarity in meaning. Finally, these categories are further aggregated to produce synthesised findings that can inform recommendations or 'lines of action' to guide evidence-based policy or practice [
] guidelines. We searched five electronic databases (PubMed, PsycINFO, Embase, CINAHL, and Web of Science) from database inception until mid-March 2022 to identify qualitative studies that examined parents’, health professionals’ or photographers’ experiences of stillbirth bereavement photography. We customised the search strategy for each database, and a research librarian reviewed search terms to ensure accuracy. Search terms included: “stillbirth”, “stillborn”, “photography”, “picture”, “image”, “qualitative” and relevant variants. Additionally, we manually searched included articles’ reference lists and undertook citation searching on Scopus and review of database alerts to identify other relevant studies.
Fig. 1Prisma Flowchart Illustrating the Study Selection Process.
Studies were included if they investigated parents', health professionals’, or photographers’ perspectives and experiences of stillbirth bereavement photography. Studies investigating these experiences following multiple forms of pregnancy loss, e.g., miscarriage, stillbirth, perinatal or neonatal loss, were eligible if data associated with stillbirth cases were reported separately and could be extracted. Included studies also needed to present primary, qualitative data; mixed methods studies were eligible if qualitative data were reported separately and in detail. Furthermore, studies needed to be published in English in a peer-reviewed journal. Studies were excluded if they investigated experiences of bereavement photography following any form of loss other than stillbirth, examined memory-making practices after stillbirth other than photography, did not report primary data, were not full articles, or contained only quantitative data.
2.3 Quality appraisal
Three authors (removed for blind review) independently appraised the reporting quality of eligible studies using the QualSyst Quality Assessment Checklist [
Kmet L.M., Cook L.S., Lee R.C. Standard quality assessment criteria for evaluating primary research papers from a variety of fields. 2004. Alberta Heritage Foundation for Medical Research (AHFMR).
], which examines methodological rigour for qualitative studies according to 10 criteria considered central to validity. Authors appraised each study on the extent to which it met each criterion (‘yes’ = 2, ‘partial’ = 1, ‘no’ = 0). Any discrepancies regarding quality appraisal were resolved through discussion. We calculated a summary score for each study by summing the scores obtained across relevant items and dividing by 20 (the total possible score), yielding a possible score of zero-one, with higher scores indicating better quality. Kmet et al [
Kmet L.M., Cook L.S., Lee R.C. Standard quality assessment criteria for evaluating primary research papers from a variety of fields. 2004. Alberta Heritage Foundation for Medical Research (AHFMR).
]. report two cut-off scores; a liberal cut-off score of.55 and a conservative score of.75. In the current meta-synthesis, quality scores ranged from .60–.95 (see Table 1; a detailed appraisal of quality for each study is reported in Supplementary Table 1). To present a thorough picture of stillbirth bereavement photography perspectives and experiences, we applied the liberal cut-off score, resulting in the inclusion of all studies.
Table 1Characteristics of Included Studies (Nstudies=12).
'I should have seen her face at least once': parent's and healthcare providers' experiences and practices of care after stillbirth in Kabul province, Afghanistan.
The study was embedded in the 2010 Having A Baby in Queensland survey, which used birth notifications to identify women who gave birth in Queensland between February and May 2010.
Parent support organisations; clinicians were recruited at four clinical sites.
In-depth narrative interviews
Thematic analysis
0.80
Note: a This group of participants is not counted in the total sample size as this study was a secondary analysis of another included study. So as not to artificially inflate the total sample size, we only counted these participants once.
Data extracted from each study included (i) sample characteristics, (ii) stillbirth characteristics, (iii) study characteristics, and (iv) perspectives and experiences of bereavement photography. Following extraction, each study’s findings (statements/metaphors/themes) were extracted verbatim along with illustrative extracts/quotations. We extracted the original authors' definitive statements from the narrative where author-identified themes did not exist. All authors discussed, refined and agreed on the final synthesised findings.
3. Results
The initial search resulted in 240 articles that were imported into Endnote for screening; two additional articles were identified through citation searching and one additional article through database alerts. After removing duplicates, the first and second authors co-screened 182 potentially eligible articles to minimise data-selection bias. Interrater agreement was high (99%, K = .97), with any discrepancies resolved by consensus discussion. Following title and abstract screening, 53 potentially eligible studies remained for further full-text review. In addition, six authors of studies that included multiple forms of pregnancy loss were contacted to seek stillbirth-only data; one author responded, and their two studies were included. Among these authors we attempt to contact was the corresponding author for the only study addressing photographers’ experiences with perinatal bereavement photography; as we received no reply and it was not possible to determine which data pertained specifically to stillbirth we excluded the study. Therefore, we assessed the methodological quality of 12 studies eligible for inclusion.
3.1 Characteristics of included studies
Table 1 summarises the key characteristics of the included studies. Studies were published between 2001 and 2021. Most originated from the United States (Nstudies = 7). Qualitative data were collected using interviews (Nstudies = 6), focus groups (Nstudies = 2; 1 online), online blogs (Nstudies = 1) and self-report questionnaires with open-response questions (Nstudies = 2). Most data were analysed using thematic analysis (Nstudies = 7); however, authors also employed content analysis (Nstudies = 2), phenomenological analysis (Nstudies = 1), and discourse analysis (Nstudies = 1).
3.2 Reporting quality of included studies
Fig. 2 illustrates the reporting quality of all included studies, assessed using the QualSyst Quality Assessment Checklist [
Kmet L.M., Cook L.S., Lee R.C. Standard quality assessment criteria for evaluating primary research papers from a variety of fields. 2004. Alberta Heritage Foundation for Medical Research (AHFMR).
]. All studies at least partially met eight of the ten criteria. Specifically, all studies comprehensively identified the research question or objective, described systematic data collection procedures, and reported conclusions that were adequately supported by the results (Items 1, 6 and 9: 100% fulfilled). In addition, most researchers described the context for the research and connected the study to a theoretical framework or wider body of literature (Items 3 and 4: 92% fulfilled). Study design, sampling framework, and data analysis were also sufficiently explained (Items 2 and 7: 83% fulfilled; Item 5: 75% fulfilled). Some studies reported verification procedures (Item 8: 58% fulfilled); however, no study met the criteria for reflexivity (Item 10: 0% fulfilled).
Fig. 2Reporting Quality of Included Studies Using the QualSyst Quality Assessment Checklist
Kmet L.M., Cook L.S., Lee R.C. Standard quality assessment criteria for evaluating primary research papers from a variety of fields. 2004. Alberta Heritage Foundation for Medical Research (AHFMR).
The sample consisted of 351 participants (Nstudies=12); 323 participants were parents who had lost a child during pregnancy (92%); most cases were reported as stillbirth (n = 315, 97.52%, Nstudies=11). One study included participants who experienced stillbirth and other forms of pregnancy loss (e.g., miscarriage); the number of stillbirth cases could not be extracted (n = 8, 2.48%, Nstudies=1). The author of this study was contacted and identified which extracts belonged to parents who experienced stillbirth; only these extracts were analysed.
Among the sample of parents, 259 were female (91.33%), and 28 were male (8.67%). Parents were aged between 18 and 51 years, based on 252 participants (Nstudies=9), with a mean age of 32.87 years based on 165 participants (Nstudies=2). The ethnicity of several parents was not specified (n = 74, 22.91%, Nstudies=4); where ethnicity was reported (n = 249, 77.09%, Nstudies=8), 221 were Caucasian (88.76%), 12 were African (4.82%), 3 were Latino (1.2%), 1 was Hispanic (0.4%), 1 was Asian (0.4%), and 11 identified as ‘Other’ (4.42%). Three-hundred and fifteen parents experienced infant loss between 20 and 43 weeks’ gestation (97.52%, Nstudies=11); the mean age of gestation based on 170 participants (45.21%, Nstudies=2) was 34.67 weeks. At interview, the time since the parents’ loss ranged from 1 week to several years (Nstudies=8). Four studies did not provide this information.
The remaining 28 participants (8%) were health professionals who had supported someone who had experienced a stillbirth. Demographic information about the healthcare workers was not reported. The sample did not comprise any bereavement photographers as the only study identified that investigated photographers’ experiences with perinatal bereavement photography was excluded from our review due to an inability to extract stillbirth-specific data.
3.4 Synthesised findings
We employed an inductive meta-aggregative approach where we aggregated the findings from the included studies into eight categories and ten subcategories, which we then formed into two synthesised findings relating to the research aim (see Table 2). Below we present the two synthesised findings (i) Bereavement photography as a helpful tool for the present and (ii) Bereavement photography as a helpful tool for the future.
Table 2Synthesised Findings and Component Categories of Experiences of Bereavement Photography Among Parents Following Stillbirth.
Bereavement photography as a helpful tool for the present: In the immediate moment of loss, while bereavement photography can generate conflicted feelings with some parents ill-equipped to consider the practice, it can offer validation of loss and assist with explaining outcomes to siblings
•
Some parents are ill-equipped to consider bereavement photography
o
Parents are often distracted following their stillbirth and do not always think to take bereavement photographs
o
Didn’t know they could
o
Parents express appreciation for health professionals who proactively recommend and instigate bereavement photography
•
Conflicted feelings: many parents feel that bereavement photography feels ‘wrong’
•
Validation of loss and alleviation of guilt, blame and shame
o
Bereavement photography serves to internally and/or externally validate a parent’s loss
Bereavement photography as a helpful tool for the future: Parents views about bereavement photography may fluctuate over time but photographs provide parents with proof their child existed, enable them to share their child with others and maintain memories over time
•
Bereavement photographs provide ongoing proof of the child’s existence
•
Sharing the photographs with others
o
Stillbirth bereavement photographs allow for the child’s existence and the parents’ loss to be better understood by others
o
Parents fear external responses to the photographs
o
Bereavement photographs assist in the process of introducing a stillborn baby to their siblings
o
Parents’ experiences with sharing bereavement photographs vary widely; experiences can be negative or positive
•
Parents' views about having photographs taken may fluctuate over time
o
Parents who chose not to have the photographs for various reasons expressed regret
o
Parents who were not wanting to view the photographs at the time of the loss were thankful that they have them for the future
•
Bereavement photographs maintain memories that might otherwise fade over time
3.4.1 Synthesised finding 1 - Bereavement photography as a helpful tool for the present
Findings from 12 studies, grouped into four categories and five subcategories (Table 2), yielded the synthesised findings: ‘In the immediate moment of loss, while bereavement photography can generate conflicted feelings with some parents ill-equipped to consider the practice, it can offer validation of loss and assist with explaining outcomes to siblings.’.
Some parents are ill-equipped to consider bereavement photography: In many ways, parents can be underprepared for what will occur following a stillbirth [11, 13; 20–23]. Upon reflection, several parents expressed that they did not feel adequately prepared for after-birth care. One mother explained that ‘It’s like some people (doctors, nurses) are afraid to talk to you…no one told me what to expect delivering a dead baby….no one told me that I should bring a camera’ [20, p.141], while another parent expressed ‘I wish the nurses could have guided us more in our final hours with our son. I didn’t think to bathe or dress him or have our pictures taken holding him. I wish someone would have suggested it’ [13, 2007, p.70]. As a result, many parents pursued little to no memory-making practices with their children: ‘Those [polaroid photographs taken by the doctor immediately after birth] were the only two pictures that I had, because I didn’t know that I could take pictures’ [11, p.125].
Several parents expressed that health professionals could have been more proactive in preparing parents for their experiences, including educating them about and recommending memory-making practices [
'I should have seen her face at least once': parent's and healthcare providers' experiences and practices of care after stillbirth in Kabul province, Afghanistan.
] ‘I wish the nurses could have guided us more in our final hours with our son…I wish someone would have suggested it [taking photographs]’ [20, p.141]. Conversely, many parents who took photographs recognised that they might not have done so without health professionals’ guidance and were highly thankful: ‘It was wonderful as far as the staff. Somebody told us that we would appreciate having pictures. It would never occur to me to take pictures of him. We took lots of pictures and I held him for about 3 days’ [22, p.6].
Many parents are underprepared for the events following a stillbirth, particularly regarding memory-making activities. Some parents explained that they did not have the essential tools for bereavement photography, while others were unaware of this option. All parents who missed this opportunity due to lack of preparation expressed deep regret and loss. Importantly, when health professionals proactively recommended these services, parents were more likely to have photographs taken; later, these parents expressed gratitude and relief that someone had prompted them to do so.
Conflicted feelings: many parents feel that bereavement photography feels ‘wrong’: Bereavement photography can evoke conflicting feelings in parents [
]. While some parents did not consider bereavement photography amidst the busyness of their hospital stay, others declined the service, expressing disdain toward the concept: ‘Everything felt so wrong. It was almost taboo: you don’t keep a picture of a dead baby’ photographs’ [23, p. 127] and ‘It didn’t seem right to take photographs’ [5, p.151]. Such feelings led one mother to decline bereavement photography; she later regretted this decision: ‘I was terrified how the baby would look and couldn’t imagine wanting to take, keep photographs. I was so wrong. My baby was beautiful and precious and we do not have any decent pictures and I am devastated’ [5, p.151]. In contrast, some parents who felt uncomfortable with the process had photographs taken despite these feelings and were thankful they did so. The same father who deemed the process ‘wrong’ went on, ‘But of course, that is the only thing we have left now. It’s good that somebody thinks of taking pictures; you are very thankful afterwards’ [23, p.127].
Sometimes, partners differed in feelings about bereavement photography [
]. For example, one father explained how he saw the photographs as ‘painful’ and ‘full of emotion’, whereas his wife found them to be a source of comfort: ‘I am glad we have them, but I haven’t looked at them.they bring up too much emotion for me, and how we are, so I don’t.but I am glad they are there[…] but I know the pictures have made it easier for my wife, which makes it easier for me’ [11, p.126]. Bereavement photography can induce a range of emotions, and for some parents, very painful ones. Yet, parents tend to express gratitude for the photographs and what they provide for themselves and/or their grieving partners.
Validation of loss and alleviation of guilt, blame and shame: Bereavement photography appears to be a powerful tool for validating loss and counteracting feelings of invalidation, guilt and shame that many women experience after stillbirth [
]. For example, one mother articulated that the photographs helped to validate the reality of her loss and challenge her self-doubt: ‘I’m so glad I have those pictures because otherwise I’d think that really didn’t happen to me.That was just a bad dream, you know. But the pictures are … proof that the baby did exist’ [24, p.260].
Such validation is important as stillbirth can evoke guilt and shame in women if they blame themselves for their child’s loss [
]. One physician, in acknowledging women’s self-blame, described the role of health professionals in the following way: ‘They usually blame themselves; they think it’s their fault. It’s our role to make sure this is not happening and reassuring them that there is nothing they did. It’s very important to reassure them that they did not do anything’ [22, p.11]. In addition to the important role of health professionals in addressing feelings of self-blame, bereavement photographs offer another means to assist with such feelings. Notably, one mother commented that the photographs lessened fears about their child and feelings of worry or self-blame: ‘I think that the photographs have taken a lot of the worry out of my mind—that he was abnormal or that he was hideous looking or something. The pictures help to know that there wasn’t anything that I did wrong to cause this’ [11, p.126]. Overall, then, bereavement photography was seen to play an important role in validating loss and assisting with feelings associated with stillbirth; photographs were not only mementoes but physical objects that directly validated parents’ loss and counteracted feelings of guilt, blame and shame.
3.4.2 Synthesised finding 2 - Bereavement photography as a helpful tool for the future
Findings from 12 studies, grouped into four categories and five subcategories (Table 2), comprised the synthesised finding: ‘Parents’ views about bereavement photography may fluctuate over time, but photographs provide parents with proof their child existed, enable them to share their child with others and maintain memories over time.’.
Bereavement photographs provide ongoing proof of the child’s existence: Several parents expressed that bereavement photographs provided ongoing proof of their child’s existence and helped to honour their baby [
]. One father described how the photographs of his son were valuable confirmation and reminders to himself but also a signal to others that his child had existed: ‘The pictures and everything, the obituaries that were in the paper.sort of like legitimize his life. My son really existed and they keep him in my mind’ [11, p.126]. Parents who felt that other people dismissed their child’s life highly valued these tangible keepsakes: ‘Taking pictures was so helpful for me. Having some proof that she existed […] We refuse to forget or minimize her existence (as suggested by some family)’ [20, p.141]. Ultimately, parents seem to value bereavement photographs as tangible proof of their child’s existence; this provides comfort for many parents, especially if they feel that others minimise their child’s life.
Sharing the photographs with others: Bereavement photographs provided parents with a means of sharing their baby’s life with family and friends [
]. Parents were personally comforted by the images in many cases but feared others’ responses to the images: ‘Some people think the pictures are morbid, but [they are] not to me. I am the one that had her, it happened to me! People can say the weirdest things. I think that is why I don’t share the pictures with a lot of people, because maybe I am afraid of what they are going to say’ [11, p.125]. Some mothers were particular about whom they shared the photographs with, particularly when they predicted negative responses: ‘Because she was so deformed, we did not ask any family or friends if they wanted to see her and have not shown her photo to anyone except our son who is 2′ [25, p.72]. Importantly, parents described how other people who have experienced stillbirth tend to respond more positively and sensitively to the images: ‘I’ve got all these pictures. To somebody in the outside world, that’s gruesome.But you can come here [perinatal hospice agency] and the.moms bring their photo albums, and we can show each other our babies. And we can fulfill the need that we have to talk about our kids. That they’re real people’ [24, p.262].
Bereavement photographs also assist in the process of introducing and facilitating meaningful connections between a stillborn baby and their siblings [
]. One father described how photographs helped his family: ‘I think it made it easier explaining to the kids, because there was an actual picture of the baby. That it made it easier for them.once they saw the pictures, they realized that this was their brother’ [11, p.126–127]. His wife also stated, ‘I think it was good for them to see.and that his picture looked just like their baby picture.They just couldn’t understand how we got the pictures after he was in heaven’ [11, p.127]. Other parents did not share the photographs with the baby’s siblings immediately but planned to in the future: ‘Actually, when the kids get older, I am going to tell them about Jillian and show them the pictures. I want them to know that she did exist and that she was a part of them’ [11, p.126].
Many parents appreciated the role of bereavement photographs in sharing their child with others, although their experiences of sharing the photographs varied. Some parents were reluctant to share the pictures for fear of negative responses; however, they still valued sharing the photographs with certain people, particularly with their other children.
Parents' views about having photographs taken may fluctuate over time: Importantly, parents revealed that attitudes toward bereavement photography often change over time [
]. Parents who had photographs taken but did not want to view them at the time of their loss expressed gratitude for the photographs retrospectively. One father appreciated their midwife encouraging photographs and highlighting their future importance: ‘Do you want me to take pictures? You will, you will appreciate these pictures. Not now, not tomorrow, but in the future…and they’re right.’ [12, p.871]. Conversely, parents who chose not to have the photographs tended to express regret about their decision: ‘I was terrified how the baby would look and couldn’t imagine wanting to take, keep photographs. I was so wrong. My baby was beautiful and precious, and we do not have any decent pictures and I am devastated’ [5, p.151]. For parents who were hesitant about or not ready to see photographs, some health professionals stored the photographs with hospital records or gave them to parents in a sealed envelope or as part of a memory box: ‘The hospital did up a box for us, with photos, foot and handprints, his little dress and a toy. I’m not really sure what else, I haven’t looked in the box, just not ready yet’ [25, p. 69].
Several parents demonstrated changing views on bereavement photography. Some parents were reluctant to receive the photographs but accepted them despite this; on reflection, these parents were often very thankful for these memories. In contrast, parents who declined the service often regretted this decision and wished they had photographs of their child. Attempts by hospitals to facilitate sealed memory-making packages for hesitant parents appeared to be highly valuable.
Bereavement photographs maintain memories that might otherwise fade over time: Tangible memory-making items such as photographs assisted parents in maintaining memories of their children [11; 13; 20–22, 24, 26]. Parents recognised that their memories could fade over time and appeared to find comfort in knowing that the photographs would preserve them: ‘It’s something tangible to look at so that I don’t have to keep going back in my mind and worrying about the memories fading.It’s here, and I can get it anytime, and always’ [11, p.126]. Another mother shared how the photographs ‘[make] it real, and not a distant memory’ commenting that ‘you don’t want to forget them. They’re still your baby’ [24, p. 260]. As well as helping to preserve existing memories, tangible mementoes such as photographs help parents to keep their child’s place of belonging within their home and foster a continued relationship between the stillborn baby and family: ‘I put the memory box on my dresser. I put a wreath right there and a little teddy bear. I printed out a bunch of her pictures and I have them in a special frame’ [26, p.139].
Parents who experience stillbirth have minimal contact, and therefore memories, with their child; as a result, many parents express concern about forgetting this time. Bereavement photography can be an effective and comforting tool for maintaining these early memories. Furthermore, parents may experience an ongoing connection with their children by displaying these memories in their homes.
4. Discussion
Overall, our synthesis of qualitative literature concerning bereavement photography experiences following stillbirth identified two key overarching findings: namely, that stillbirth photography provided parents with a tool for the present (e.g., to help validate their experience) as well as a tool for the future (e.g., to enable parents to maintain memories of their child over time, and to share their experience with others). Included studies focused primarily on parent experiences, with some parents descrbing conflicting experiences and perspectives. However, the aggregated findings suggest that bereavement photography is primarily experienced positively and is likely to be a helpful tool within hospitals to help parents process their loss, connect with their baby, and manage their grief.
In terms of stillbirth bereavement photography as a useful tool for the present, the aggregated findings suggest that photography may assist parents to feel ‘in the moment’ following a stillbirth and to connect with their baby. Previous literature suggests that, while stillbirth is not uncommon, many parents are unprepared and unaware of the processes for care following a stillbirth [13;20–23]. Unsurprisingly, then, the studies in our review reported that some parents did not undertake memory-making activities – including photography – because they were unaware this was an option. However, most parents who undertook photography said it helped validate their experience and identity as parents, while also allaying any feelings of guilt and shame. These outcomes are important since – while changing – many parents continue to report feeling that their experiences are not validated and that there is an ongoing ‘silence’ associated with stillbirth [
Importantly, parents within our review often highlighted the role of health professionals in helping them understand what memory-making activities were available (including photography); either in terms of wishing health professionals had told them about available opportunities, or because they were grateful that they had done so. This finding aligns with other literature which has consistently pointed to the role of health professionals in hospitals in supporting parents following stillbirth, with long-lasting implications for parents’ wellbeing [
While parents expressed regret if they missed the opportunity to take photographs, it is also notable that there was some initial ambivalence in parents regarding photography [
]. Our findings also suggested a potential gender difference regarding views towards photography, with fathers more likely to see photographs as a potential source of pain. Given the dearth of fathers in the available research – and indeed in stillbirth literature more generally [
] – this potential gender difference requires more research.
The second synthesised finding in our review was that stillbirth photography offers an important tool for the future. Specifically, many parents highlighted the ongoing importance of photographs as memory-making tools, including to honour their baby into the future [
]. In particular, photographs enabled parents to share their baby with family and friends, although some parents expressed concerns that other people may find the photographs morbid [
]. Regarding the latter point, a key gap in the literature concerning stillbirth bereavement photography is the experiences of parents from diverse (non-Caucasian) backgrounds, who may hold differing views about death and dying, including stillbirth [
Finally, our review points to some family-related benefits of stillbirth bereavement photography. The first of these is that photographs may facilitate connection between the stillborn baby and their siblings, while the second relates to the photographs enabling parents to keep the memory of their baby alive in the broader extended family. In this regard, photographs may play a critical role in enabling extended family members to support bereaved parents and ensure the baby remains a valued family member. While parent participants in the included studies indicated that these were important aspects of bereavement photography from their point of view, this connection through photographs may also be meaningful for extended family members. This is another important area for future research, including for grandparents for whom there is currently scant literature [
Literature has consistently pointed to the importance of the hospital experience in the ongoing wellbeing of parents who have experienced stillbirth. Our study contributes to this literature, and the bereavement care literature more broadly, by highlighting the role of bereavement photography following stillbirth in parents’ experiences. Notably, previous literature on perinatal death has also suggested that photographs be offered as part of best-practice clinical care in the hospital (e.g., [
Given that the included studies consistently reported positive experiences of bereavement photography – and regret where photographs were not taken – we recommend the normalisation and discussion of bereavement photography ahead of stillbirth (where appropriate) and the provision of information about bereavement photography after stillbirth (See Table 3). We recognise that many parents find the amount of information to absorb after stillbirth overwhelming [
]; however, given the long-term implication of choices concerning photographs for the wellbeing of parents and broader family, we suggest that normalising memory-making, including photography, is a low-cost and worthwhile addition to information given to parents.
Table 3Recommendations for Stillbirth Bereavement Photography.
Interactions with parents
•
Where a stillbirth is anticipated, advise parents in advance that they may want to consider photographs of and with their child, after their arrival.
•
After a stillbirth occurs, suggest and encourage parents to take photographs of and with their child; many parents are unaware that this is an option.
•
Normalise stillbirth bereavement photography. Have written information available that explains and normalises bereavement photography and note that many parents choose to have photographs to remember their child.
•
When talking about bereavement photography use appropriate non-clinical and normalising language and ensure that their child is referred to by their name. For example, would you like me to take some photos of you with Sienna.
•
Provide caring, empathetic, non-judgemental care and respect parents decisions about bereavement photography.
•
Advise parents that they can choose the photography process and empower them to do what works best for them – including who is present (e.g., the parents only, siblings, grandparents etc), who takes the photographs e.g., (themselves, other family members, hospital staff or bereavement photographers), and the types of photograph (e.g., child alone, cuddling child, bathing child). If appropriate, provide suggestions about options other parents have chosen.
•
Ensure a camera is available in the birth suite to enable parents to have photographs, in the case that they do not have a camera. The photographs can subsequently be given to the parents on a portal digital storage device (i.e., usb).
•
Provide access to a bereavement photographer, if desired and appropriate.
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Give parents time; If parents wish to spend time with and take photographs of and with their child, allow them the time they need to do so, without rushing them.
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Engage in conversation with parents about what they may like to do with their photographs and how their feelings about them may change over time.
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For parents who are unsure about photographs, offer them the option of receiving photographs in a sealed envelope or memory box.
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Advise parents that photographs are only one memory-making option – offer other options too such as hand and foot prints, a lock of hair.
Health professional training and support
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Provide training for health professionals on how to routinely and sensitively raise bereavement photography with parents.
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Teach health professionals how to appropriately respond to and facilitate requests for bereavement photography.
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Teach health professionals how to appropriately and sensitively respond to parents who decline bereavement photography.
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Provide support for health professionals after caring for families who experience stillbirth.
Finally, our review suggests several specific factors may be important to parents’ experiences of bereavement photography or facilitating parents’ photography decision-making. These include: 1) empowering parents to make choices about the photography processes, including who is present and how the photographs are taken; 2) giving parents time to make choices, and 3) talking with parents about options, including storing photographs in hospital records or a locked box if parents would prefer not to see photographs initially. While all health professionals can contribute positively to parental wellbeing and provide parents with information and support regarding bereavement photography in instances of stillbirth, midwives are particularly well-positioned to play a pivotal role in successfully implementing our evidence-informed recommendations for clinical practice.
6. Limitations
Our review has contributed to a key gap in the literature in providing an overview of the qualitative evidence concerning bereavement photography following stillbirth. Our review is limited by the inclusion only of studies published in English, which limits the evidence-based to English-speaking countries. It is also limited by gaps in the available literature. In particular, and as already noted, very few studies included fathers’ perspectives, and the available literature was heavily centred on Caucasian parents' experiences. Additionally, very few studies considered healthcare providers' perspectives; a critical gap in knowledge given that recommendations stemming from the included studies point to the important role of providers in helping parents navigate choices following stillbirth. Similarly, no studies included photographers, whose conduct and role are likely key to parents’ experiences.
7. Conclusion
Our review highlights the important role of stillbirth bereavement photography in parents’ experiences of stillbirth, both at the time of the stillbirth and into the future. In particular, memory-making - specifically bereavement photography - was an important part of parents' sense-making following stillbirth. Overall, our review demonstrates the importance of normalising photography and facilitating memory-making to help parents maintain memories of their baby and share their experience with others.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
Ethical statement
Ethical approval was not required for this study as it is a review of the existing literature.
Conflict of interest
The authors declare no conflict of interest.
Acknowledgements
The authors would like to acknowledge the assistance of Research Librarian, Ms Vikki Langton, for her guidance with search terms.
Flenady V., Oats J., Gardener G., Masson V., McCowan L., Kent A., et al. for the PSANZ Care around the time of stillbirth and neonatal death guidelines group. Clinical Practice Guideline for Care Around Stillbirth and Neonatal Death. Version 3.4, NHMRC Centre of Research Excellence in Stillbirth. Brisbane, Australia, January 2020.
Kmet L.M., Cook L.S., Lee R.C. Standard quality assessment criteria for evaluating primary research papers from a variety of fields. 2004. Alberta Heritage Foundation for Medical Research (AHFMR).
'I should have seen her face at least once': parent's and healthcare providers' experiences and practices of care after stillbirth in Kabul province, Afghanistan.
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