Bereavement Counsellors Research Articles

What Has the Sudden Unexpected Infant Death and Sudden Death in the Young Case Registry Learned About Consenting Families for DNA Banking and/or Genomic Research?

Since 2015, the Sudden Unexpected Infant Death (SUID) and Sudden Death in the Young (SDY) Case Registry has characterized sudden and unexpected deaths among young people (0-20 years). Families may provide informed consent to save biospecimens for banking and/or genomic research. We reviewed all consent-eligible cases to describe the frequency, time from death to consent, type (paper, phone, or electronic), and staffing method (Medical Examiner Office-based bereavement counselor vs outsourced genetic counselor). Of 5438 cases from January 2015 to January 2022, 3498 (64%) were eligible for consent and 391 (11%) were successfully consented. Half (54%) were obtained within 60 days of the death, 39% within 48 hours. Most were paper based (73%); 23% were obtained by phone, and 4% electronically. Consent rates varied by site from 3% to 66%. Higher consent rates were achieved within a Medical Examiner Office by a social worker or death investigator. Only 3% of consents attempted by a contracted genetic counselor were successful. Identified barriers include lack of available contact information, inability to reach family using the collected information, and lack of response when contacted. Consent rates were highest shortly after death when families were contacted by the Medical Examiner Office as part of bereavement outreach.

Bereavement Counsellors' Experiences Supporting the Families of Deceased Children Within a German Bereavement Network- A Qualitative Interview Study.

Background: The "Bereavement Network Lower Saxony" (BNLS) provides professional bereavement support to families grieving for a child. The present study aimed at exploring the experiences of BNLS bereavement counsellors in providing bereavement support to affected families. Methods: 12 semi-structured qualitative interviews were conducted with bereavement counsellors of the BNLS between June and August 2022. Interviews were recorded, transcribed and analysed using qualitative content analysis, according to Mayring (2010). Results: Bereavement counsellors perceived that grief could be experienced very differently, and thus bereavement support must always be based on the individual needs and resources of bereaved family members. Bereavement counsellors appreciated exchange within the network and supervision to cope with emotional load that arises from compassion for those affected. Conclusions: Bereavement support within a network structure may improve the accessibility of individual support and enable exchange between counsellors, thus ensuring better bereavement support. Public outreach and strategic partnerships with clinics may amplify the positive impact of this support service.

Digital photographic legacies, mourning, and remembrance: looking through the eyes of the deceased

This article examines how digital photographic legacies affect and shape mourning and remembrance. The research sample comprises 32 interviews with bereaved persons, two expert interviews, 500 photographs, 200 screenshots, and social media contents. The qualitative, empirical research utilises constructivist grounded theory. Research data were gathered through intensive media-elicitation interviews, researcher-generated photography, and extant data collection. The findings demonstrate the profound impact of digital photographic legacies on mourning and remembrance, and that creatively working with inherited photographs is an essential task in bereavement. Digital photographs left behind empower mourners to recall everyday life in rich detail, to recognise the personality of the deceased, to feel close, and to reconnect with them. Further, inherited photographs may alleviate grief by allowing mourners to experience missed periods of the deceased’s life, to learn about their hidden facets, to be reassured about their good life, to answer questions of why, guilt, and time in cases of suicide, and thus to reconstruct the deceased’s biography. The article advocates a refocusing of photography research on photography’s commemorative function. It suggests that bereavement researchers and counsellors could benefit from further exploration of digital photographic legacies for grief and through a consideration of advancing therapeutic grief techniques which utilise digital photographs.

Engaging and supporting the public on the topic of grief and bereavement: an evaluation of Good Grief Festival.

Good Grief Festival was originally planned as a face-to-face festival about grief and bereavement. Due to COVID-19, it was held online over 3 days in October 2020. To evaluate the festival's reach and impact. Pre/post evaluation. Pre-festival online surveys assessed reasons for attending and attitudes to bereavement across four items (fear of saying the wrong thing, avoiding talking to someone bereaved, knowing what to do if someone bereaved was struggling, knowing how to help). Post-festival online surveys evaluated audience experiences and the four attitude items. Free-text responses, analysed using thematic analysis, generated suggestions for improvement and general comments. Between 5003 and 6438 people attended, with most attending two to five events. Pre-festival survey participants (n = 3785) were mostly women (91%) and White (91%). About 9% were from Black or minoritised ethnic communities. About 14% were age ⩾65 years, 16% age ⩽34 years. Around 75% were members of the public, teachers, students or 'other'; 25% academics, clinicians or bereavement counsellors. A third had been bereaved in the last year; 6% had never been bereaved. People attended to learn about grief/bereavement (77%), be inspired (52%) and feel part of a community (49%). Post-festival participants (n = 685) reported feeling part of a community (68%), learning about grief/bereavement (68%) and being inspired (66%). 89% rated the festival as excellent/very good and 75% agreed that they felt more confident talking about grief after attending. Higher ratings and confidence were associated with attending more events. Post-festival attitudes were improved across all four items (p < 0.001). Attendees appreciated the festival, particularly valuing the online format, opportunities for connection during lockdown and the diversity and quality of speakers. Suggestions included improving registration, more interactive events and less content. Good Grief Festival successfully reached a large public audience, with benefit in engagement, confidence and community-building. Evaluation was critical in shaping future events. Findings suggest festivals of this nature can play a central role in increasing death- and grief-literacy within a public health approach.

Pediatric and Adult Cardiologists' and Respirologists' Referral Practices to Palliative Care.

Children and adults with advanced cardiac or respiratory disease may benefit from specialized palliative care (SPC), but there has been little SPC research in this area. To explore pediatric cardiologists' and respirologists' (pediatric clinicians) beliefs about and referral practices to SPC and compare these results to adult cardiologists and respirologists (adult clinicians). Pediatric and adult clinicians were sent a survey exploring SPC referral practices and beliefs. Responses were summarized with descriptive statistics. Pediatric and adult clinicians' responses were compared using Pearson's chi-square test. The response rate was 56% (989/1759); 9% (87/989) were pediatric clinicians. Pediatric clinicians were more likely than adult clinicians to be female, work in an academic center, and experience fewer patient deaths (P<0.001). Pediatric clinicians reported better access to SPC clinical nurse specialists, spiritual care specialists and bereavement counselors (P<0.001), while adult clinicians reported better access to palliative care units (P<0.001). Pediatric clinicians referred to SPC earlier, while adult clinicians tended to refer after disease directed therapies were stopped (P<0.001). More than half of all clinicians felt patients had negative perceptions of the phrase "palliative care". Although most clinicians were satisfied with SPC quality (73-82%), fewer adult clinicians were satisfied with SPC availability (74 vs. 47%; P<0.001). Fewer pediatric clinicians felt that SPC prioritized oncology patients (13 vs. 53%; P<0.001). There are important differences between pediatric and adult clinicians' beliefs about and referral practices to SPC. This may reflect unique features of pediatric diseases, provider characteristics, care philosophies, or service availability.

Experience of Childhood Bereavement and Current Attachment Style

Purpose: Previous research supports the idea that attachment style is closely associated to experience of bereavement, but the research investigating current attachment style and childhood experience of bereavement is lacking. This study aims to explore how experience of bereavement in childhood relates to current attachment style in adulthood and to utilize attachment theory in understanding the experience of bereavement during childhood. &#x0D; Methodology: Mixed method design was used to address the research objectives. This study was based on qualitative interview and a quantitative questionnaire. Twenty-four students from University of Bedfordshire were employed through purposive sampling to conduct semi-structured interviews. Experience in Close Relationships (ECR) questionnaire was used for quantitative assessment.&#x0D; Findings: The results of thematic analysis showed people with various attachment styles offered various accounts of their bereavement experience as children. This study offered proof that this was the case.&#x0D; Recommendations: It is suggested that this research can help us understand how children experience bereavement by illustrating how attachment theory might be used. This study may aid mental health practitioners in identifying some practical methods for assisting grieving individuals. The parent-child attachment bond approach among bereaved families may involve the appropriate bereavement counsellors and professionals. Bereavement experience during childhood links to adulthood attachment style. This study will contribute in developing the understanding of bereavement in children with attachment theory perspective.

Review: Narrative Medicine in Hospice Care: Identity, Practice, and Ethics through the Lens of Paul Ricoeur, by Tara Flanagan

Review: <i>Narrative Medicine in Hospice Care: Identity, Practice, and Ethics through the Lens of Paul Ricoeur</i>, by Tara Flanagan

Working After Loss: How Bereavement Counsellors Experience Returning to Therapeutic Work After the Death of Their Parent

Despite increased interest in the impact of external events on counsellors, surprisingly little has been written on counsellor bereavement. To address the research question: How do bereavement counsellors experience therapeutic work after the death of their parent? Interviews were conducted with four bereaved counsellors who reflected on its impact on their work. Data were analysed using Interpretative Phenomenological Analysis (IPA). Three major themes emerged; how decisions about returning to work were informed by colleagues and supervision; the benefits of returning to work and the use of ‘bracketing’; long-term implications for practice including heightened empathy with clients’ and disclosure of loss. In addition, participants felt they had insufficient guidance regarding fitness to practice. The possible limitations of the study were that self-selection may have introduced an element of bias to the results. These findings support existing literature and also revealed potential gaps in grief and loss training for counsellors and supervisors. A particular training issue for supervisors might be identifying and discussing fitness to practice issues with supervisees. There are also implications for counsellors in terms of the use of self-disclosure in therapy. Suggested further research to explore the use of self-disclosure in greater depth.

Bereavement Support Services in a National Sample of Hospices: A Content Analysis

Although the Medicare Hospice Benefit mandates that hospices provide bereavement services to families for 1 year following death, it does not stipulate what services should be offered or how. Thus, this study aimed to explore the range of hospice bereavement services. This study stems from Cagle et al.’s (2020) prior study surveying 600 randomly selected agencies, stratified by state and profit status. Most participants (N = 76) worked as clinical supervisors or directors of patient services (41.6%) for medium-sized (53.2%), for-profit hospices (50.6%). Responses to “What types of bereavement support does your hospice provide to families?” were content analyzed. Analyst triangulation and peer debriefing enhanced trustworthiness. Four domains emerged: timing of support, providers of support, targets of support, and formats of support. Each domain reflected substantial variability. All hospices offered postdeath bereavement support. A minority described offering predeath support, often through bereavement risk assessment and supportive services targeting those at risk. Providers frequently included trained bereavement counselors, social workers, and chaplains. Less often, hospices leveraged familiar members of the decedents’ care team to encourage family participation. Although bereavement services predominantly targeted surviving adult family members of deceased hospice patients, services tailored to children and hospice-unaffiliated community members also emerged. The format of bereavement services demonstrated the widest variability. Commonly reported formats included written materials, support groups, and phone calls. Most hospices employed multiple formats. Although findings are consistent with prior research, the variability in each domain complicates rigorous investigation of which aspects offer the greatest benefit to bereaved family members.

Therapeutic creativity and the lived experience of grief in the collaborative fiction film Lost Property

This collaborative project aimed to represent the embodied experience of grief in a fiction film by drawing on research, and on the personal and professional experience of all involved: academics; an artist; bereavement therapists and counsellors; and professional actors, cinematographers, sound engineers and other film crew. By representing grief in a more phenomenologically minded manner, the project sought to capture the lived experience of loss on screen while contributing meaningfully to the discourse on practice-as-research. Hay, Dawson and Rosling used a collaborative fiction film and participatory action research to investigate whether storying loss, and representing it through narrative, images and embodied movement, is therapeutic. Participatory action research was beneficial in facilitating changes in the co-researchers’ thinking, feeling and practice, and in enabling participants to inhabit multiple roles in a manner that expanded their disciplinary boundaries. However, while the project’s effect on some of the participants demonstrated the ways that creativity and meaning making can support adaptive grieving, it also revealed the risks of using participatory action research and fiction film to investigate highly emotive topics such as grief.

Development and psychometric validation of the Dying Imagery Scale-Revised

Survivors of sudden death losses frequently experience vivid imagery associated with the events surrounding their loved one’s death. This paper describes the development and psychometric validation of the Dying Imagery Scale-Revised (DIS-R), a 15-item measure assessing three forms of death imagery, including Reenactment, Remorse, and Revenge imagery. The first study details the development of the DIS-R in a sample of suddenly bereaved college students. The second study examines the validity and reliability of the DIS-R among suddenly bereaved adults. Results suggest that the measure is psychometrically sound and may provide clinically useful information for bereavement counselors.

Management of Stillbirth: Obstetric Care Consensus No, 10 Summary.

Stillbirth is one of the most common adverse pregnancy outcomes, occurring in 1 in 160 deliveries in the United States. In developed countries, the most prevalent risk factors associated with stillbirth are non-Hispanic black race, nulliparity, advanced maternal age, obesity, preexisting diabetes, chronic hypertension, smoking, alcohol use, having a pregnancy using assisted reproductive technology, multiple gestation, male fetal sex, unmarried status, and past obstetric history. Although some of these factors may be modifiable (such as smoking), many are not. The study of specific causes of stillbirth has been hampered by the lack of uniform protocols to evaluate and classify stillbirths and by decreasing autopsy rates. In any specific case, it may be difficult to assign a definite cause to a stillbirth. A significant proportion of stillbirths remains unexplained even after a thorough evaluation. Evaluation of a stillbirth should include fetal autopsy; gross and histologic examination of the placenta, umbilical cord, and membranes; and genetic evaluation. The method and timing of delivery after a stillbirth depend on the gestational age at which the death occurred, maternal obstetric history (eg, previous hysterotomy), and maternal preference. Health care providers should weigh the risks and benefits of each strategy in a given clinical scenario and consider available institutional expertise. Patient support should include emotional support and clear communication of test results. Referral to a bereavement counselor, peer support group, or mental health professional may be advisable for management of grief and depression.

Management of Stillbirth: Obstetric Care Consensus No, 10.

Stillbirth is one of the most common adverse pregnancy outcomes, occurring in 1 in 160 deliveries in the United States. In developed countries, the most prevalent risk factors associated with stillbirth are non-Hispanic black race, nulliparity, advanced maternal age, obesity, preexisting diabetes, chronic hypertension, smoking, alcohol use, having a pregnancy using assisted reproductive technology, multiple gestation, male fetal sex, unmarried status, and past obstetric history. Although some of these factors may be modifiable (such as smoking), many are not. The study of specific causes of stillbirth has been hampered by the lack of uniform protocols to evaluate and classify stillbirths and by decreasing autopsy rates. In any specific case, it may be difficult to assign a definite cause to a stillbirth. A significant proportion of stillbirths remains unexplained even after a thorough evaluation. Evaluation of a stillbirth should include fetal autopsy; gross and histologic examination of the placenta, umbilical cord, and membranes; and genetic evaluation. The method and timing of delivery after a stillbirth depend on the gestational age at which the death occurred, maternal obstetric history (eg, previous hysterotomy), and maternal preference. Health care providers should weigh the risks and benefits of each strategy in a given clinical scenario and consider available institutional expertise. Patient support should include emotional support and clear communication of test results. Referral to a bereavement counselor, peer support group, or mental health professional may be advisable for management of grief and depression.

Obstetric Care Consensus #10: Management of Stillbirth: (Replaces Practice Bulletin Number 102, March 2009)

Stillbirth is one of the most common adverse pregnancy outcomes, occurring in 1 in 160 deliveries in the United States. In developed countries, the most prevalent risk factors associated with stillbirth are non-Hispanic black race, nulliparity, advanced maternal age, obesity, preexisting diabetes, chronic hypertension, smoking, alcohol use, having a pregnancy using assisted reproductive technology, multiple gestation, male fetal sex, unmarried status, and past obstetric history. Although some of these factors may be modifiable (such as smoking), many are not. The study of specific causes of stillbirth has been hampered by the lack of uniform protocols to evaluate and classify stillbirths and by decreasing autopsy rates. In any specific case, it may be difficult to assign a definite cause to a stillbirth. A significant proportion of stillbirths remains unexplained, even after a thorough evaluation. Evaluation of a stillbirth should include fetal autopsy; gross and histologic examination of the placenta, umbilical cord, and membranes; and genetic evaluation. The method and timing of delivery after a stillbirth depend on the gestational age at which the death occurred, maternal obstetric history (eg, previous hysterotomy), and maternal preference. Health care providers should weigh the risks and benefits of each strategy in a given clinical scenario and consider available institutional expertise. Patient support should include emotional support and clear communication of test results. Referral to a bereavement counselor, peer support group, or mental health professional may be advisable for management of grief and depression.

In Praise of Dead Pets: An Investigation into the Content and Function of Human-Style Pet Eulogies

ABSTRACTFew socially recognized death customs are available for bereaved pet owners, who may experience adverse mental health as a result of disenfranchisement and other complications surrounding pet loss. Additionally, pet owners can experience complex grief when the death is by euthanasia. When a human loved one dies, societal infrastructures allow mourners to express loss through death rites. Such customs often include a eulogy; a traditional testimony of praise which serves a number of functions in human bereavement, allowing the mourner to celebrate the life of the deceased, publicly validating their loss, and facilitating a “letting go.” This study assessed the value of eulogy writing as a therapeutic memorial device for bereaved pet owners. The text of 19 human-style pet eulogies, provided by professional celebrants, was investigated using inductive thematic analysis and emerging themes revealed two higher order categories: Structural Content and Emotional Content. Lower-order Structural Content themes included references to “biographical detail” of the pet, “relationships,” “spirituality,” and “death.” Lower-order Emotional Content themes included the strong presence of “love” and “joy/happiness,” as well as “sadness” and “guilt” around euthanasia. Similarities in content and structure were found between pet and human eulogies: praising the deceased and describing fond memories and happy times spent together. This suggests that human and pet eulogies may also share similar therapeutic benefits: allowing mourners to “let go,” providing validation, and a means of retaining a remembrance bond with the pet. We suggest that eulogy writing could offer a powerful tool to allow bereaved owners to process their loss within a positive framework, and recommend that supporting professionals, like veterinarians, social workers and bereavement counsellors, should consider exploring the use of eulogy writing as a coping-strategy option for vulnerable bereaved clients.

Negotiating recovery in bereavement care practice in England: a qualitative study

AbstractThis paper explores how ‘recovery’ from grief is negotiated in bereavement care practice in England. What constitutes recovery from grief remains contested in bereavement research and practice. In this paper, I outline some of the debates in the literature concerning what constitutes recovery following bereavement before presenting interview data from bereavement counsellors and support workers to discover how practitioners negotiate recovery following bereavement in practice. The findings show mixed responses to the use of the term recovery. I highlight six components that emerged across the accounts and that the participants agreed were important to the success of bereavement counselling. However, rather than provide an empirical basis for recovery, the findings in this paper reveal the conflicts and ambiguities that exist in bereavement care practice.

Perceived Stigma of Sudden Bereavement as a Risk Factor for Suicidal Thoughts and Suicide Attempt: Analysis of British Cross-Sectional Survey Data on 3387 Young Bereaved Adults.

The sudden death of a friend or relative, particularly by suicide, is a risk factor for suicide. People who experience sudden bereavement report feeling highly stigmatised by the loss, potentially influencing access to support. We assessed whether perceived stigma following sudden bereavement is associated with suicidal thoughts and suicide attempt. We analysed cross-sectional survey data on 3387 young adults bereaved by the sudden death of a close contact. We tested the association of high versus low perceived stigma (on the stigma sub-scale of the Grief Experience Questionnaire) with post-bereavement suicidal ideation and suicide attempt, using random effects logistic regression, adjusting for socio-demographic factors, pre-bereavement psychopathology, and mode of sudden bereavement (natural causes/unnatural causes/suicide). Subjects with high perceived stigma scores were significantly more likely to report post-bereavement suicidal thoughts (adjusted odds ratio (AOR) = 2.74; 95% confidence interval (CI) = 1.93–3.89) and suicide attempt (AOR = 2.73; 95% CI = 2.33–3.18) than those with low stigma scores. People who feel highly stigmatised by a sudden bereavement are at increased risk of suicidal thoughts and suicide attempt, even taking into account prior suicidal behaviour. General practitioners, bereavement counsellors, and others who support people bereaved suddenly, should consider inquiring about perceived stigma, mental wellbeing, and suicidal thoughts, and directing them to appropriate sources of support.

Brutus and Other Heroines: Playing Shakespeare's Roles for Women

lengthy stays elsewhere, including in Ireland and Syria. The usual autobiographical elements are present: Bachi describes living in small Parisian apartments during his student years as well as his love life and his development as an author. Bachi also engages in a sort of dialogue with Albert Camus (1913– 60), another child of Algeria who loved his native land but could not survive there. Some of the most moving moments of Bachi’s book are found in the descriptions of his trips back to Algeria, in order to visit his family: “There is nothing left of the Casbah where my father was born, nor of Belcourt where he grew up: many of the working-class neighborhoods that were neglected for half a century now resemble bombed-out ruins.” Bachi often points out that the main mission of a writer is to bear witness, something he does clearly, honestly, and eloquently in his latest work. Edward Ousselin Western Washington University Harriet Walter. Brutus and Other Heroines: Playing Shakespeare’s Roles for Women. London. Nick Hern Books. 2016. 210 pages. British actress Harriet Walter (who won a Tony Award nomination for Mary Stuart on Broadway in 2009) offers feminist essays on major Shakespearean roles for women as well as some of the male roles. Her chapters on Ophelia, Imogen, and Lady Macbeth are abridged or edited versions of earlier incarnations elsewhere (Players of Shakespeare and Clamorous Voices, for instance), but her collection (while neither an academic treatise nor a practical handbook) is a kind of autobiography spanning over thirty years of her career, moving from female roles of great vulnerability (Ophelia, Helena, Imogen) to those of confident complexity and wisdom (Beatrice, Portia) and culminating in a Cleopatra of genuine insecurity. When Walter was offered three “trouser roles”in1987—herYearoftheBoy—shewas able to discover how Shakespeare’s women use disguise variously and for different purposes : to get a job in an exclusively male court (Viola); to survive outside the court (Rosalind); or to enter a world from which women were normally barred (Portia). The essays show a deep study of text, though some of the supplementary resources (such as consultations with psychiatrists, bereavement counselors, or prisoners) could seem excessive to those who put a primacy on the actor’s imagination rather than on psychiatry or sociology. However, the theatrical results, according to her evidence, bore good fruit (especially for interpreting Lady Macbeth), though her take on Beatrice as “an old maid” (something becoming ever more prevalent in our time) is idiosyncratic, if not downright wrong. The most provocative sections of her book are, of course, the essays on Brutus and Henry IV, and her cordial letter to Shakespeare, all of which are critical of the male template. Walter believes that if it was legitimate for boys to play women (even Cleopatra) in Shakespeare’s day, then it is equally legitimate for women to play men. Well, not necessarily, because gender illusion is usually defeated by an actress’s natural vocal pitch and physical movement. While women can, indeed, bring feminist insights to male roles, how should Lady Anne, for instance, be played opposite a female Richard III? Nevertheless, Walter’s book presents many valuable insights from a skilled Shakespearean player’s point of view because she strives to retrace Shakespeare’s steps from word to thought to motivation to the heart of character. In the process, she offers us much to ponder as she challenges theater audiences to broaden their definitions of man and woman, hero and heroine. Keith Garebian Mississauga, Ontario Pierre Voélin To Each Unfolding Leaf: Selected Poems (1976–2015) Trans. John Taylor Bitter Oleander Press This edition brings the major works of Swiss poet and essayist Pierre Voélin to anglophone readers for the first time. Presented en face, Voélin’s poetry confronts the inhumanity of man to man while navigating the complex relationships between humanity and the natural systems that produced such a complex and conflicted animal. Nota Bene STATEMENT OF OWNERSHIP, MANAGEMENT, AND CIRCULATION 1. Publication Title: World Literature Today 2. Publication Number: 060-680 3. Filing Date: September 1, 2017 4. Issue Frequency: Bimonthly 5. Number of Issues Published Annually: Five 6. Annual Subscription Price...

Care in subsequent pregnancies following stillbirth: an international survey of parents.

To assess the frequency of additional care, and parents' perceptions of quality, respectful care, in pregnancies subsequent to stillbirth. Multi-language web-based survey. International. A total of 2716 parents, from 40 high- and middle-income countries. Data were obtained from a broader survey of parents' experiences following stillbirth. Data were analysed using descriptive statistics and stratified by geographic region. Subgroup analyses explored variation in additional care by gestational age at index stillbirth. Frequency of additional care, and perceptions of quality, respectful care. The majority (66%) of parents conceived their subsequent pregnancy within 1 year of stillbirth. Additional antenatal care visits and ultrasound scans were provided for 67% and 70% of all parents, respectively, although there was wide variation across geographic regions. Care addressing psychosocial needs was less frequently provided, such as additional visits to a bereavement counsellor (10%) and access to named care provider's phone number (27%). Compared with parents whose stillbirth occurred at ≤ 29 weeks of gestation, parents whose stillbirth occurred at ≥ 30 weeks of gestation were more likely to receive various forms of additional care, particularly the option for early delivery after 37 weeks. Around half (47-63%) of all parents felt that elements of quality, respectful care were consistently applied, such as spending enough time with parents and involving parents in decision-making. Greater attention is required to providing thoughtful, empathic and collaborative care in all pregnancies following stillbirth. Specific education and training for health professionals is needed. More support for providing quality care in pregnancies after stillbirth is needed. Study rationale and design More than two million babies are stillborn every year. Most parents will conceive again soon after having a stillborn baby. These parents are more likely to have another stillborn baby in the next pregnancy than parents who have not had a stillborn baby before. The next pregnancy after stillbirth is often an extremely anxious time for parents, as they worry about whether their baby will survive. In this study we asked 2716 parents from 40 countries about the care they received during their first pregnancy after stillbirth. Parents were recruited mainly through the International Stillbirth Alliance and completed on online survey that was available in six languages. Findings Parents often had extra antenatal visits and extra ultrasound scans in the next pregnancy, but they rarely had extra emotional support. Also, many parents felt their care providers did not always listen to them and spend enough time with them, involve them in decisions, and take their concerns seriously. Parents were more likely to receive various forms of extra care in the next pregnancy if their baby had died later in pregnancy compared to earlier in pregnancy. Limitations In this study we only have information from parents who were able and willing to complete an online survey. Most of the parents were involved in charity and support groups and most parents lived in developed countries. We do not know how well the findings relate to other parents. Finally, our study does not include parents who may have tried for another pregnancy but were not able to conceive. Potential impact This study can help to improve care through the development of best practice guidelines for pregnancies following stillbirth. The results suggest that parents need better emotional support in these pregnancies, and more opportunities to participate actively in decisions about care. Extra support should be available no matter how far along in pregnancy the previous stillborn baby died.

OA44 Do it yourself care: from diagnosis to crematorium.

: Our mum was diagnosed, declined and died over a period of two months and one week. My siblings gathered from around the globe. We cared for her in her home on a small island off the west coast of British Columbia (Canada). She described this as the richest period of her life. We shared the care. And her friends, "the walkie-talkies" came to support us and to check in on her. We took time for fresh air. We walked the beaches. A piece of driftwood inspired my brothers to build a coffin. Silk in her studio inspired my sister to create a beautiful shroud. We snuggled with her, talked, sang, reminisced. We listened to her stories. And then in the quiet of the night, she died. We kept her body at home for a full day. Her friends gathered. Then early the next morning, with government permit to transport her body, we went via ferry, and drove her down Vancouver Island, past the green burial ground that my brother designed to the crematorium. The next day the bereavement counsellor greeted us, and with warmth and sensitivity introduced us to the staff and the cremator. After a bit of time, we lifted her body into the cremator and pushed the button. In Canada, the majority of after death care is provided by funeral professionals, but there is a growing interest in the concept of do it yourself care for the body and funerals. The purpose of this presentation is to share a photo journal of this experience, and depending on time allotted, open time for discussion regarding "do it yourself" care.