Experiences Of Bereaved Parents Research Articles

Parent Preferences and Experiences in Advance Care Planning in the Neonatal Intensive Care Unit.

Our objective was to evaluate the preferences and experiences of bereaved parents around advance care planning (ACP) in the neonatal intensive care unit (NICU). Single-center cross-sectional survey of bereaved parents who experienced the death of a child in the Boston Children's Hospital NICU between 2010 and 2021 was carried out. Chi-square, Fisher's exact, Fisher Freeman Halton, and Wilcoxin rank sum tests were used to evaluate differences between parents who did and did not receive ACP. Out of eligible parents, 40 out of 146 (27%) responded to our survey. Most parents (31 out of 33, 94%) rated ACP as being very important and 27 out of 33 (82%) reported having ACP discussions during their child's admission. Parents preferred initial ACP discussions to occur early in their child's illness trajectory with members of the primary NICU team, with most parents' experiences aligning with these preferences. Parents value ACP discussions suggesting a further role for ACP in the NICU. · NICU parents value and participate in advance care planning discussions. · Parents prefer advance care planning with members of the primary NICU, specialty, and palliative care teams. · Parents prefer advance care planning early in their child's illness trajectory.

Toward Optimal Emotional Care During the Experience of Miscarriage: An Integrative Review of the Perspectives of Women, Partners, and Health Care Providers.

Miscarriage is frequently associated with significant emotional impact, causing psychological distress, trauma, and grief. Unfortunately, women and partners frequently report dissatisfaction with care around miscarriage, and health care providers report feeling ill-prepared and underequipped to provide emotional support. This integrative review synthesizes the individual perspectives of the woman experiencing the miscarriage, the partner, and the different health care provider roles involved in the care to better understand what future research is necessary to improve the experiences of bereaved parents and their health care providers. Electronic databases were searched for studies that covered emotional care around miscarriage from the perspective of women, partners, or health care providers. The review included studies published in English between 2015 and 2022, using either quantitative or qualitative methods. Thematic analysis was carried out, and conclusions from these articles were integrated into themes and subthemes. A total of 60 studies met the inclusion criteria. Two main themes were identified for women: (1) a need for more information and (2) a need for acknowledgment of their loss. Two main themes were likewise identified for partners: (1) a need for more information and (2) a need for recognition. Three main themes were identified for health care providers: (1) a need for additional training, (2) components of quality care, and (3) perceived barriers to providing care. There is broad overlap in the needs identified by bereaved parents and their health care providers, as well as general agreement regarding the barriers to providing effective care. Five areas of future research priority were identified to understand how best to meet these needs: empirical evaluation of strategies to meet identified needs, investigation of setting-specific needs, integrated consideration of all relevant roles, investigation of the care needs of diverse groups, and an investigation of the predictors of emotional impact.

Bereaved parents’ experience of support groups following perinatal bereavement: a thematic synthesis

Support groups play an essential role in caring for parents experiencing perinatal death and bereavement. However, there is very little data on the effectiveness of these services on their well-being. To better understand the experience of bereaved parents using support group services, a qualitative systematic review was conducted using Thomas and Harden’s method. Seven databases (MEDLINE, CINAHL, Scopus, PsycARTICLES, Cairn, Érudit, and Repère) were searched in October 2017 with an update in June 2021. A total of 16 studies were included and critically evaluated. The thematic synthesis made it possible to generate four analytical themes to describe parents’ experience according to the notion of spaces. The first theme refers to external space, i.e., the format of the support groups (virtual or face-to-face), and the other three themes reflect internal spaces, i.e., the functions of the groups (support, expression, and learning). This thematic synthesis confirms that participating in support groups benefits bereaved parents. It also offers possible solutions to improve the structure and accessibility of support groups.

Caring for the Bereaved Parents in the NICU: Fathers-The Missing Piece of the Puzzle.

Grief after infant death is a common experience of bereaved parents often seen in the neonatal intensive care unit (NICU). The NICU staff tend to focus more on the mother's support, and fathers are often not treated equally as mothers. This study aimed to investigate the circumstance of caring for parents facing infant death in NICUs. Twenty-eight face-to-face in-depth interviews were conducted between March 2018 and April 2019 in the northwest of Iran. Participants were selected via purposive sampling. An inductive thematic approach was used for data analysis. Three main themes and 7 subthemes were extracted. The main themes were: "the father-the missing piece of the puzzle in the mourning process," "restricted presence of fathers due to religious and traditional beliefs," and "the father-the patience stone." Due to cultural-religious backgrounds, traditional beliefs, structural problems, and organizational restrictions, fathers in NICUs do not receive adequate support, particularly when faced with their infant's death. Bereaved fathers need to receive more support and attention from healthcare providers. Therefore, there is a need for changing the care providers' attitudes regarding the role of fathers and the quality of support that fathers should receive in the Muslim populations.

Grief Trajectories of Bereaved Parents of Adolescents and Young Adults With Advanced Cancer: A Qualitative Analysis Using Phenomenology.

Different parents grieve differently. However, research directed at understanding the important contextual or individual factors that influence the path each bereaved parent takes is lacking. In this qualitative analysis we seek to understand the array of bereaved parent experiences more completely. By deeply diving into one parent dyad using interpretive phenomenology analysis and situating that story within the conventional content analysis of 13 other bereaved parents of adolescents and young adults (AYAs) who died from advanced cancer, we illustrate the roles of religion/spirituality, maintaining a connection, and fulfilling parental roles as elements of grief processing. Clinicians and investigators should consider similar individualized approaches to understanding and supporting the grief experiences of bereaved parents before and after the death of a child.

How Bereaved Parents Experience Public, Self Stigma Years After a Child's Death.

This study identifies the stigma experienced by 12 bereaved parents 2 and 5years after losing a child in the Sewol ferry disaster in South Korea. Using thematic analysis, we categorized the experience of stigma into two components based on Corrigan and Kosyluk's social cognitive model of stigma: public stigma and self-stigma, and each was analyzed into three types of stigma: stereotype, prejudice, and discrimination. We identified four additional factors related to stigma mitigation. The potential implications for characterizing the experiences of bereaved parents, particularly those facing stigma, are discussed in light of these findings in the longitudinal perspective.

Bereaved parents’ perspectives on their child’s end-of-life care: connecting a self-report questionnaire and interview data from the nationwide Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study

BackgroundPaediatric Palliative Care (PPC) focuses on ensuring the best possible quality of life for the child and his/her family by extending beyond the physical domain into psychosocial and spiritual wellbeing. A deep understanding of what is important to parents is crucial in guiding the further evaluation and improvement of PPC and end-of-life (EOL) care services. Much can be learned from specific positive and negative experiences of bereaved parents with the EOL care of their child. This report builds upon a questionnaire survey as part of the national Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study.MethodsOne part of the PELICAN study was set up to assess and explore the parental perspectives on their child’s EOL care. Interview data were used to explain the extremely positive and negative results of a quantitative survey in an explanatory sequential mixed-methods approach. Data integration occurred at different points: during sampling of the interview participants, when designing the interview guide and during analysis. A narrative approach was applied to combine the qualitative results reported here with the already published quantitative survey results.ResultsEighteen mothers (60%) and twelve fathers (40%) participated in 20 family interviews. All parents reported having both positive and negative experiences during their child’s illness and EOL, which was characterised by many ups and downs. The families transitioned through phases with a prospect of a cure for some children as well as setbacks and changing health status of the child which influenced prognosis, leading to the challenge of making extremely difficult decisions. Severely negative experiences still haunted and bothered the parents at the time when the interview took place.ConclusionsA deep understanding of the perspectives and needs of parents going through the devastating event of losing a child is important and a prerequisite to providing compassionate care. This complex care needs to recognise and respond to the suffering not only of the child but of the parents and the whole family. Communication and shared decision-making remain pivotal, as do still improvable elements of care that should build on trustful relationships between families and healthcare professionals.

Informing Simulation Design: A Qualitative Phenomenological Study of the Experiences of Bereaved Parents and Actors.

Simulations, which represent reality, are effective in pediatric healthcare communication skills education and training. Parents are increasingly engaged in simulation development, particularly for authentic character development, to help achieve greater psychological fidelity. For simulated encounters related to a child's end-of-life, involvement of bereaved parents would make sense. However, this is challenging because there is limited research to guide their inclusion and significant responsibility for any approach to be thoughtful and psychologically safe for participating parents. This study explores the impact and experiences of bereaved parents and actors who participated in simulation design. This qualitative phenomenological study involved five bereaved parents and two actors who participated in a full-day workshop to design and develop characters for use in a simulation. Individual semistructured interviews were conducted up to four weeks after the workshop. Data collected from these telephone interviews were analyzed using inductive content analysis. Bereaved parents found the workshop emotionally challenging but positive, worthwhile, and beneficial. Similarly, actors found the workshop helpful in character development and, although it was an intense experience for them, it validated the importance of their work. Key elements of our research findings could inform future such activities. Involving bereaved parents in simulation design can be psychologically safe and beneficial for both parents and actors. Ongoing involvement of bereaved parents may lead to higher-quality simulated experiences, allowing clinicians to practice skills to enhance care provided at a child's end-of-life.

Comparative Analysis of the Psychosocial Symptoms and Experiences of Bereaved Parents and Parents of Children Who Survived the Sewol Ferry Accident After 5 Years: A Qualitative Interview Study.

BackgroundThis study aimed to investigate the psychosocial symptoms and experiences of bereaved parents of victims and parents of survivors of the Sewol Ferry accident five years after the accident.MethodsIn-depth interviews of 186 bereaved parents of victims or survivors of the Sewol Ferry accident were conducted. We elicited and categorized meaning units relevant to the psychological, cognitive, and physical traits of the participants from these interviews. Differences in responses between bereaved parents and survivors’ parents and between genders were examined using frequency analyses and χ2 tests.ResultsData were organized under seven headings: observed attitude and impression of participants, difficulties due to mental health problems, difficulties due to physical pain, difficulties in relationships, negative changes following the incident, positive changes following the incident, and help needed. Within these headings, 27 themes, 60 sub-themes, and 80 meaning units were elicited.ConclusionThis study explored the psychiatric, physical, and relational problems reported by bereaved parents and those of survivors as well as major changes in their personal and social lives after the Sewol Ferry accident. Differences in responses according to gender were also identified. The results from this study could inform and facilitate the implementation of intervention measures, such as long-term psychological evaluation, to bereaved parents of victims or survivors of disasters.

Compassionate Healthcare for Parents of Children with Life-limiting Illnesses: A Qualitative Study.

Objectives:Premature death of a child from a serious illness is probably one of the most painful experiences for a parent. This study examined the clinical experiences of bereaved parents of children with a life-limiting illness to provide recommendations for quality care.Materials and Methods:Data were collected using semi-structured in-depth interviews with bereaved parents whose children had died at least 3 months before the interview. Parents were purposively sampled from two institutions offering end-of-life care to children with life-limiting illnesses. Data were analysed using thematic analysis.Results:Data analysis revealed three main themes: (1) Clinical communication, (2) Healthcare infrastructure and (3) Non-physical aspects of healthcare. The seven subthemes uncovered were as follows: (1) Honesty and clarity, (2) empathy, (3) interdisciplinary communication, (4) inconveniences in hospital, (5) home palliative care, (6) financial burden of illness and (7) psychosocial and spiritual support.Conclusion:Strategies to improve healthcare for children and their families are multifold. Underlying the provision of quality care is compassion; a child and family-friendly healthcare system with compassionate providers and compassionate institutional policies are vital components to achieving quality healthcare. Culturally sensitive psychosocial, emotional and spiritual support will need to be integrated as standard care.

"Parenting Beyond the Veil": The Continued Parenting Relationship After a Child's Death Due to Cancer.

Background: Childhood cancer is the leading cause of illness-related death, leaving thousands of parents to experience bereavement. This article presents select findings about the nature of the continued parenting relationship, which is an essential theme of the parental bereavement experience. Method: Heideggerian phenomenology provided the philosophical underpinnings of this study, which aimed to describe the lived experience of bereaved parents who experienced the death of a child due to cancer. Van Manen's (1997) method guided data collection and analysis. Six parents participated in interviews to share what it has been like for them since their child's death. The researcher wrote analytic memos, documented detailed field notes, and used a member checking process to ensure trustworthiness of findings. Results: A structure of the lived experience of parental bereavement emerged, which included the essential theme of the continued parenting relationship. The parenting relationship continues throughout a parent's lifetime in spite of the child's physical absence, albeit in a different manner. This different nature of parenting is known as parenting beyond the veil. Bereaved parents continue to parent beyond the veil by engaging in meaningful activities, seeking activities that strengthen a deep connection with the child, and being open to comforting signs that enhance their continued relationship. Discussion: Parents believe sharing their experience can help nurses and other professionals understand the importance of their continued parenting relationship and their need to parent beyond the veil so that they can provide high quality care to bereaved parents in the future.

The impact of cultural beliefs and practices on parents\u2019 experiences of bereavement following stillbirth: a qualitative study in Uganda and Kenya

BackgroundStillbirth is an extremely traumatic and distressing experience for parents, with profound and long-lasting negative impacts. Cultural beliefs and practices surrounding death vary considerably across different contexts and groups, and are a key influence on individual experiences, impacting grief, adjustment, and support needs. Few studies have explored cultural influences surrounding stillbirth in an African context. This study explored the influence of cultural beliefs and practices on the experiences of bereaved parents and health workers after stillbirth in urban and rural settings in Kenya and Uganda.MethodsA qualitative descriptive study design was employed. Face to face interviews were conducted with parents (N = 134) who experienced a stillbirth (≤ 1 year) and health workers (N = 61) at five facilities in Uganda and Kenya. Interviews were conducted in English or the participants’ local language, audio-recorded and transcribed verbatim. Analysis was conducted using descriptive thematic analysis.ResultsCommonalities in cultural beliefs and practices existed across the two countries. Three main themes were identified: 1) Gathering round, describes the collective support parents received from family and friends after stillbirth. 2)‘It is against our custom’ addresses cultural constraints and prohibitions impacting parents’ behaviour and coping in the immediate aftermath of the baby’s death. 3) ‘Maybe it’s God’s plan or witchcraft’ summarises spiritual, supernatural, and social beliefs surrounding the causes of stillbirth.ConclusionsKinship and social support helped parents to cope with the loss and grief. However, other practices and beliefs surrounding stillbirth were sometimes a source of stress, fear, stigma and anxiety especially to the women. Conforming to cultural practices meant that parents were prevented from: holding and seeing their baby, openly discussing the death, memory-making and attending the burial. The conflict between addressing their own needs and complying with community norms hindered parents’ grief and adjustment. There is an urgent need to develop culturally sensitive community programmes geared towards demystifying stillbirths and providing an avenue for parents to grieve in their own way.

Weighing Distress and Benefit: Understanding the Research Participation Experiences of Bereaved Parents of Children With Complex Chronic Conditions

ContextImproving end-of-life care for children with complex chronic conditions (CCCs) requires parental perspectives. The vulnerability of bereaved parents has historically been a research barrier and studies describing their research participation experience are lacking. ObjectivesTo examine the research participation experience of bereaved parents of children with CCCs and to identify factors associated with distress or benefit. MethodsIn this cross-sectional study, parents of deceased children who received care at Boston Children's Hospital between 2006 and 2015 completed survey questions describing their research participation experience after completing the Survey About Caring for Children with CCCs. Multivariable logistic regression was used to identify factors associated with perceived distress or benefit with participation. Free responses were analyzed using qualitative techniques. ResultsOne hundred fourteen (54%) of 211 eligible parents completed the survey a median of 3.9 years (interquartile range, 2.1–6.5) after their child's death. Most parents felt comfortable (78%) and reported benefit (88%) from survey participation. Only 6% of parents reported “a great deal” of distress with participation, and of those, 67% still found it beneficial. Being at least moderately spiritual was associated with benefit (adjusted odds ratio 7.12 [95% CI: 1.58–32.1]), while parental decisional regret was associated with distress (adjusted odds ratio 3.41 [95% CI: 1.33–8.72]). Benefit was the most common domain identified, with parents expressing appreciation for the opportunity to help others and share their story. ConclusionA majority of parents responded to questions about their child's end-of-life care without significant distress. When present, distress was often accompanied by a perception that participation was beneficial.

The Experiences of Bereaved Parents After the Loss of a Child to Cancer: A Qualitative Metasynthesis.

This study aims to synthesize qualitative evidence about the bereavement experience of parents following the death of a child due to cancer. A qualitative metasynthesis was conducted from searching five databases. The search identified 650 articles that were independently assessed by two reviewers. Thirty-one articles were selected for full-text reading and assessed for eligibility; a total of 14 articles were included in the final sample and submitted to quality appraisal. The software NVivo® was used to organize the data and support the thematic analysis procedures. Two analytical themes were constructed: (1) losing a child and facing a rupture in identity and sense of life and (2) surviving grief and reengaging in life. The grief process was dynamic, continuous, and begun before the death of the child. Fathers and mothers reacted differently to the loss and experience of grief. The loss of a child definitively changed the parents' life and caused identity crisis and loss of life's purpose. During the process of survival, parents constructed new meanings that helped them cope with grief; they used strategies that allowed them to recover their sense of purpose in life. Synthesizing the experience of bereaved parents is essential to improve the support families of children with advanced cancer receive to better cope with their suffering and loss, before and after the child's death.

The Power of Bereaved Parent Faculty to Inform Pediatric End-of-Life Education with Standardized Patients

Introduction Caring for a child at end-of-life (EOL) can be a distressing event for pediatric clinicians; this is compounded by the lack of formal training in EOL care and the taboo nature of discussing such an emotionally heavy topic. To address these issues, communication-based simulations can provide relevant and meaningful training experiences. These types of simulations require a heightened need for sensitivity, respect, and authenticity, especially in standardized patient (SP) performance. The lived experience of bereaved parents—those …

Healing the Hearts of Bereaved Parents: Impact of Legacy Artwork on Grief in Pediatric Oncology

ContextApproximately 12% of children with cancer will not survive, representing a devastating loss for parents. Strategies to improve parental coping and grief have been understudied. Although legacy-making is frequently offered as standard care to children with terminal illness and their families, these interventions have received little empirical attention. ObjectivesThis study qualitatively explores the legacy-making and grief experiences of bereaved parents who participated in legacy artwork with their child before his or her death from cancer. MethodsTwelve bereaved parents and 12 healthcare providers participated in individual semistructured interviews guided by the Dual Process Model of Grief and Continuing Bonds theory. Qualitative data were analyzed via conventional content analysis. ResultsFive themes emerged. Legacy artwork allows for family bonding and opens communication regarding the child's impending death; provides opportunities for parents to engage in life review and meaning-making; is often displayed in the parents' home after the child's death, and parents take comfort in using these projects to continue their bond with their deceased child; can ameliorate parents' grief after their child's death; and may reduce healthcare providers' compassion fatigue and provide them an outlet for coping with their patients' deaths. ConclusionParticipating in legacy artwork may result in self-reported positive outcomes for bereaved parents before and after their child's death, including family bonding, enhanced communication, meaning-making, and improvements in grief. As a result of these benefits, children's hospitals may consider offering legacy artwork for children with cancer and their families.

Trauma to Transformation: the lived experience of bereaved parents of children with chronic life-threatening illnesses in Singapore

BackgroundIn 2016, over 6.6 million children died globally, and 245 children died in Singapore. Chronic illnesses are prevalent causes of child mortality around the world. Despite growing research that examines the lived experience of parents bereaved by their child’s chronic life-threatening illness, there is no such study within the Asian context.MethodsTo bridge this knowledge gap, meaning-oriented, strength-focused interviews were conducted with 25 parental units (i.e. 6 couples, 13 lone mothers, 4 lone fathers, and 2 primary parental figures) who lost their child to chronic life-threatening illness in Singapore (N = 31), including those of Chinese (n = 17), Malay (n = 10) and Indian ethnicities (n = 4), between August 2017 and April 2018.ResultsData analysis adhering to the grounded theory approach revealed 7 themes and 25 sub-themes that were organized into a Trauma-to-Transformation Model of Parental Bereavement. This model shows the major milestones in participants’ lived experience of their child’s chronic life-threatening illness and death, starting from the diagnosis of their child’s chronic life-threatening illness and the subsequent emotional turmoil (Theme 1), the mourning of their child’s death and the losses which accompanied the death (Theme 3) and participants’ experience of posttraumatic growth through reflection of their journey of caregiving and child loss (Theme 5). The model further describes the deliberate behaviors or ‘rituals’ that helped participants to regain power over their lives (Theme 2), sustain an intimate bond with their child beyond death (Theme 4), and transcend their loss by deriving positive outcomes from their experience (Theme 6). Finally, the model denotes that the lived experiences and well-being of participants were embedded within the health-and-social-care ecosystem, and in turn impacted by it (Theme 7).ConclusionThese themes and their corresponding sub-themes are discussed, with recommendations for enhancing culturally sensitive support services for grieving Asian parents around the globe.

Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study.

Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time. This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child's life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient. Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services. Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.

Voices of the unheard: A qualitative survey exploring bereaved parents experiences of stillbirth stigma

BackgroundEvery year, 2.6 million babies are stillborn worldwide. Despite these figures, stillbirth remains a relatively ignored public health issue. The wider literature suggests that this is due to the stigma associated with stillbirth. The stigma of stillbirth is seen as possibly one of the greatest barriers in reducing stagnant stillbirth rates and supporting bereaved parents. However, empirical evidence on the extent, type, and experiences of stillbirth stigma remain scarce. AimThis study aimed to explore the stigma experiences of bereaved parents who have endured a stillbirth. MethodsAn online survey of closed and open-questions with 817 participants (n=796 female; n=17 male) was conducted in high-income countries. FindingsBased on self-perception, 38% of bereaved parents believed they had been stigmatised due to their stillbirth. Thematic data analysis revealed several themes consistent with Link and Phelan’s stigma theory- labelling, stereotyping, status loss and discrimination, separation, and power. One more theme outside of this theory- bereaved parents as agents of change was also discovered. ConclusionBereaved parents after stillbirth may experience stigma. Common experiences included feelings of shame, blame, devaluation of motherhood and discrimination. Bereaved parents also reported the silence of stillbirth occurred during their antenatal care with many health care providers not informing them about the possibility of stillbirth. Further research needs to be undertaken to explore further the extent and type of stigma felt by bereaved parents after stillbirth, and how stigma is impacting the health care professional disseminating and distributing resources to pregnant women.

Incorporating Bereaved Parents as Faculty Facilitators and Educators in Teaching Principles of Palliative and End-of-Life Care.

Education and training for interdisciplinary pediatric providers requires training in principles of palliative and end-of-life (EOL) care. The experiences of bereaved parents can inform and enhance palliative care educational curricula in uniquely powerful and valuable ways. The objective of this study is to present an innovative palliative care educational program facilitated by trained bereaved parents who serve as volunteer educators in local and national palliative care educational forums and to describe how incorporation of bereaved parents in these educational forums affects participant comfort with communication and management of children at the EOL. Parent educators underwent both general and session-specific training and participated in debriefings following each session. Survey tools were developed or adapted to determine how bereaved parent educators affected participant experiences in 3 different educational forums. Pre- and postsession surveys with incorporation of retrospective preprogram assessment items to control for response shift were used in the evaluation of institutional seminars on pediatric palliative and EOL care and role-play-based communication training sessions. Results from feedback surveys sent to attendees were used to appraise the participants' experience at the international oncology symposium. Involvement of trained parent educators across diverse, interdisciplinary educational forums improved attendee comfort in communicating with, and caring for, patients and families with serious illness. Importantly, parent educators also derive benefit from involvement in educational sessions with interdisciplinary clinicians. Integration of bereaved parents into palliative and EOL care education is an innovative and effective model that benefits both interdisciplinary clinicians and bereaved parents.