Supported Privacy: An Essential Principle for End-of-Life Care for Children and Families in the PICU.

Caring for children and their families at the end-of-life is an essential but challenging aspect of care in the PICU. During and following a child's death, families often report a simultaneous need for protected privacy and ongoing supportive presence from staff. Balancing these seemingly paradoxical needs can be difficult for PICU staff and can often lead to the family feeling intruded upon or abandoned during their end-of-life experience. In this "Pediatric Critical Care Medicine Perspectives" piece, we reframe provision of privacy at the end-of-life in the PICU and describe an essential principle that aims to help the interprofessional PICU team simultaneously meet these two opposing family needs: "Supported Privacy." In addition, we offer concrete recommendations to actualize "Supported Privacy" in the PICU, focusing on environmental considerations, practical needs, and emotional responses. By incorporating the principles of "Supported Privacy" into end-of-life care practices, clinicians can support the delivery of high-quality care that meets the needs of children and families navigating the challenges and supports of end-of-life in the PICU.

"We want to include him in that journey": A qualitative descriptive study of parental experiences and considerations for sibling inclusion in the paediatric ICU.

OBJECTIVES: Siblings are an important yet often forgotten part of the paediatric intensive care unit (PICU) family experience. Commonly, siblings are supported through the experience by their parents; however, very little is known about parental experiences of providing this support. This study aims to explore parental experiences of supporting sibling inclusion in PICU. RESEARCH METHODOLOGY/DESIGN: This study utilised a qualitative descriptive approach to conduct semi-structured interviews with 6 parents of 5 children with congenital heart disease who had spent time in PICU. Data were analysed using reflexive thematic analysis. SETTING: Australian PICUs. FINDINGS: Parental considerations and experiences for sibling inclusion were identified across three key phases: Pre-inclusion, The PICU visit, and Post-inclusion. Prior to including siblings in PICU, parents considered various ways of sharing information with siblings, and weighed up the risks and benefits of bringing siblings into PICU. Parents also recounted a number of challenges and facilitators to a positive sibling experience in PICU, including supportive staff and fun activities. Finally, parents, identified that siblings require ongoing support after their inclusion in PICU and made suggestions for ongoing availability of information and supportive resources. CONCLUSIONS: This study has illuminated key parental experiences when supporting sibling inclusion in PICU before, during and after their visit. By understanding these parental experiences, PICU staff can work with and support parents where needed, helping to achieve a positive sibling inclusion experience. IMPLICATIONS FOR CLINICAL PRACTICE: Parents need ongoing support to explain the PICU to siblings of critically ill children and may benefit from specific visual resources to aid communication. In addition, PICUs should aim to ensure the physical layout is supportive of sibling needs, with dedicated spaces for siblings to play and take time out during their experience.

The impact of COVID-19 on the provision of bereavement support in Australian intensive care units: A national survey.

BACKGROUND: Bereavement support is a vital part of caring for families when a patient dies in the intensive care unit (ICU). Previous research has demonstrated that while many ICUs provide some informal aspects of bereavement care, formalised follow-up programmes are uncommon. The impacts of COVID-19 on ICU-based bereavement support are currently unknown. OBJECTIVES: The objectives of this study were to explore the current provision of bereavement support in Australian ICUs and identify the impacts of the COVID-19 pandemic on these services. METHODS: A cross-sectional exploratory web-based survey was used. The survey was distributed to one senior nurse in each public and private adult, paediatric, and neonatal ICU in Australia between April and July 2022. Descriptive statistics and reflexive thematic analysis were used to analyse the data. Ethical approval was received from La Trobe University. RESULTS: One hundred and four ICUs from 82 hospitals responded to the survey, with 36 units reporting a formal bereavement follow-up service. When compared to prepandemic levels, almost all of the common bereavement care practices explored in the survey were significantly reduced during the COVID-19 pandemic. Open-ended responses also demonstrated significant impacts of COVID-19 on bereavement care provision, particularly related to Restricted family togetherness, Logistical Challenges, and Impacts on Staff. Staff members reported adjusting care provision in response to these challenges by exploring Alternative family communications, Facilitation of family togetherness, and Increasing familysupports. CONCLUSIONS: Many of the common elements of ICU-based bereavement care were significantly reduced during the COVID-19 pandemic. In addition, the number of formal bereavement follow-up services in Australian ICUs remains largely unchanged since 2015. Ongoing research is needed to explore the long-term effects of these changes on staff and family wellbeing and on ongoing provision of ICU-based bereavement support.

Palliative care for children with complex cardiac conditions: survey results.

OBJECTIVE: To explore perspectives of paediatric cardiac and palliative care professionals on providing palliative care to children with complex cardiac conditions. DESIGN: A national survey including closed-ended and open-ended questions as well as clinical scenarios designed to capture referral practices, attitudes towards palliative care, confidence delivering key components of palliative care and perspectives on for whom to provide palliative care. Responses to closed-ended questions and scenarios were analysed using descriptive statistics. Open-ended responses were analysed thematically. PARTICIPANTS: Paediatric cardiac and palliative care professionals caring for children with complex cardiac conditions in the UK. RESULTS: 177 professionals (91 cardiac care and 86 palliative care) responded. Aspects of advance care planning were the most common reasons for referral to palliative care. Palliative care professionals reported greater confidence than cardiac colleagues with such discussions. Clinicians agreed that children with no further surgical management options, comorbid genetic disorders, antenatal diagnosis of a single ventricle, ventricular device in situ, symptomatic heart failure and those awaiting heart transplantation would benefit from palliative care involvement. CONCLUSIONS: Components of palliative care, such as advance care planning, can be provided by cardiac care professionals alongside the disease-directed care of children with complex cardiac conditions. Further research and training are needed to address confidence levels in cardiac care professionals in delivering components of palliative care as well as clarification of professional roles and parent preferences in delivery of family-centred care for children with complex cardiac conditions.

Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously ill children.

BACKGROUND: Research ethics committees are commonly perceived as a 'barrier' to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to applications for research with other populations. Whether or not this is the case in practice is unknown. AIM: The aim of this study was to explore committees' concerns, expectations and decisions for research applications involving seriously ill children submitted for review in the United Kingdom. DESIGN: Content analysis of committee meeting minutes, decision letters and researcher response letters. SETTING/PARTICIPANTS: Chief investigators for National Institute of Health Research portfolio studies involving seriously ill children were contacted for permission to review their study documents. RESULTS: Of the 77 applications included in this study, 57 received requests for revisions at first review. Committee expectations and concerns commonly related to participant information sheets, methodology, consent, recruitment or formatting. Changes were made to 53 of these studies, all of which were subsequently approved. CONCLUSION: Our findings suggest that committees review applications for research involving seriously ill children with the same scrutiny as applications for research with other populations. Yet, the perception that committees act as a barrier to this type of research persists. We suggest that this perception remains due to other factors including, but not limited to, the high levels of formatting or administrative revisions requested by committees or additional study requirements needed for research involving children, such as multiple versions of consent forms or participant information sheets.

When a Child Dies in the PICU: Practice Recommendations From a Qualitative Study of Bereaved Parents.

OBJECTIVES: Around the world, the PICU is one of the most common sites for hospitalized children to die. Although ensuring the best possible care experience for these children and their families is important, clear recommendations for end-of-life and bereavement care, arising from the parents themselves, remain limited within current literature. This report aims to describe bereaved parents' recommendations for improvements in end-of-life care and bereavement follow-up when a child dies in intensive care. DESIGN: Thematic analysis of incidental data from a larger grounded theory study. SETTING: Four Australian PICUs. SUBJECTS: Twenty-six bereaved parents participated in audio-recorded, semi-structured interviews in 2015-2016. Interviews explored their experiences of having a child die in intensive care and their experiences of end-of-life care and bereavement follow-up. Data pertaining to this report were analyzed via thematic analysis. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Bereaved parents identified several areas for care delivery and improvement across three time periods: during hospitalization; during the dying phase; and during bereavement. During hospitalization, parents' recommendations focused on improved communication, changes to the physical environment, better self-care resources, and provision of family support. During the dying phase, parents suggested private, de-medicalized rooms, familiar staff members, and support to leave the hospital. Recommendations for care after death focused mainly on the provision of ongoing support from the hospital or local bereavement services, as well as improved information delivery. CONCLUSIONS: Findings from this study offer many concrete recommendations for improvements in care both during and after a child's death. These recommendations range from simple practice changes to larger organizational modifications, offering many potential avenues for change and improvement both on an individual healthcare provider level and within individual PICUs.

Bereaved parents' experiences of the police in the paediatric intensive care unit.

BACKGROUND: A child's death in the intensive care unit is often sudden and unexpected, requiring the involvement of the state coroner to investigate both the cause and the circumstances surrounding the death. This process often involves the police, who arrive in intensive care to identify the body and collect statements from the parents. At present, very little is known about parents' experiences of this process. OBJECTIVES: To explore bereaved parents' experiences of police presence in intensive care, as part of routine coronial investigations. The findings arose from a larger study on bereaved parents' experiences of the death of a child in the intensive care unit. METHODS: Secondary analysis of incidental data from a larger grounded theory study. Nine bereaved parents from two paediatric intensive care units (PICUs) mentioned police presence in the PICU during their original audio-recorded, semistructured interviews. These data were extracted, and thematic analysis techniques were used to identify key themes. RESULTS: Three main concepts were identified with the parents' experiences: (i) timing of police interviews; (ii) the impacts of police presence; and (iii) the demeanour of the officers. Overall, the parents' experiences of police presence were negative. They felt that police arrived too soon after their child's death and took too long taking their statements, hindering their ability to say goodbye. The presence of police officers also made parents feel as though they were being accused of involvement in their child's death. Finally, several participants also experienced inappropriate or unsympathetic attitudes from the police officers attending their child's death. CONCLUSIONS: Findings from our study indicate that parents' experiences of police presence in the PICU as part of a coronial investigation may be negative, leaving lasting impressions on their experiences of their child's death. These findings provide areas for improvements in care delivery and the treatment of newly bereaved parents during the early phases of a coronial investigation.

Welcoming expertise: Bereaved parents' perceptions of the parent-healthcare provider relationship when a critically ill child is admitted to the paediatric intensive care unit.

BACKGROUND: Entering the paediatric intensive care unit with a critically ill child is a stressful experience for parents. In addition to fearing for their child's well-being, parents must navigate both a challenging environment and numerous new relationships with healthcare staff. How parents form relationships with staff and how they perceive both their own and the healthcare providers' roles in this early stage of their paediatric intensive care journey is currently unknown. PURPOSE: This paper explores bereaved parents' perceptions of their role and their relationships with healthcare providers when their child is admitted to the intensive care unit, as part of a larger study exploring their experiences when their child dies in intensive care. METHODS: A constructivist grounded theory approach was utilised to recruit 26 bereaved parents from 4 Australian intensive care units. Parents participated in audio-recorded, semi-structured interviews lasting 90-150min. All data were analysed using the constant comparative analysis processes, supported by theoretical memos. RESULTS: Upon admission, parents viewed healthcare providers as experts, both of their child's medical care and of the hospital system. This expertise was welcomed, with the parent-healthcare provider relationship developing around the child's need for medical care. Parents engaged in 2 key behaviours in their relationships with staff: prioritising survival, and learning 'the system'. Within each of these behaviours are several subcategories, including 'Stepping back', 'Accepting restrictions' and 'Deferring to medical advice'. CONCLUSIONS: The relationships between parents and staff shift and change across the child's admission and subsequent death in the paediatric intensive care unit. However, upon admission, this relationship centres around the child's potential survival and their need for medical care, and the parent's recognition of the healthcare staff as experts of both the child's care and the hospital system.

The impact of the social and physical environments on parent-healthcare provider relationships when a child dies in PICU: Findings from a grounded theory study.

OBJECTIVES: This study explores the influences of the paediatric intensive care environment on relationships between parents and healthcare providers when children are dying. It forms part of a larger study, investigating parental experiences of the death of their child in intensive care. RESEARCH METHODOLOGY: Constructivist grounded theory. SETTING: Four Australian paediatric intensive care units. MAIN OUTCOME MEASURES: Audio-recorded, semi-structured interviews were conducted with twenty-six bereaved parents. Data were analysed using the constant comparison and memoing techniques common to grounded theory. FINDINGS: The physical and social environment of the intensive care unit influenced the quality of the parent-healthcare provider relationship. When a welcoming, open environment existed, parents tended to feel respected as equal and included members of their child's care team. In contrast, environments that restricted parental presence or lacked resources for parental self-care could leave parents feeling like 'watchers', excluded from their child's care. CONCLUSIONS: The paediatric intensive care unit environment either welcomes and includes parents of dying children into the care team, or demotes them to the status of 'watcher'. Such environments significantly influence the relationships parents form with healthcare staff, their ability to engage in elements of their parental role, and their experiences as a whole.

Researching people who are bereaved: Managing risks to participants and researchers.

Conducting qualitative research, especially in areas considered 'sensitive', presents many challenges. The processes involved in such research often expose both participants and the research team to a vast array of risks, which may cause damage to their personal, professional, social and cultural worlds. Historically, these risks have been considered independent of each other, with most studies exploring only the risks to participants or only risks to researchers. Additionally, most researchers only consider risks during data collection, frequently overlooking risks that might be present during other phases of the research project. We aim, therefore, to bring together this fractured literature to enable an integrated exploration of the current academic discourse relating to risks to participants with the literature exploring risks to researchers across all phases of the research process. This article draws on personal experiences to highlight ethical issues and risks encountered by both participants and researchers throughout all phases of a research project. Beginning in recruitment, we discuss the risk of secondary distress in participants arising from researcher contact and then explore the concept of informed consent during grief and bereavement research. We then focus on risks present during data collection, examining risks for participants, such as emotional distress, and potential safety risks for the research team. Finally, we consider the risks which arise in data analysis, including both confidentiality and the possibility of researcher burnout. Previous recommendations are summarised, with new management strategies suggested based on lessons learned along the way.

Bereaved parents' experiences of research participation.

BACKGROUND: As understandings of the impacts of end-of-life experiences on parents' grief and bereavement increase, so too does the inclusion of bereaved parents into research studies exploring these experiences. However, designing and obtaining approval for these studies can be difficult, as guidance derived from bereaved parents' experiences of the research process are limited within the current literature. METHODS: We aimed to explore bereaved parents' experiences of research participation in a larger grounded theory study exploring experiences of the death of a child in the paediatric intensive care unit. Data were obtained during follow-up phone calls made to 19 bereaved parents, five of whom provided data from their spouse, 1 week after their participation in the study. Participants were asked to reflect on their experiences of research participation, with a focus on recruitment methods, timing of research contact, and the location of their interview. Parents' responses were analysed using descriptive content analysis. RESULTS: Our findings demonstrate that despite being emotionally difficult, parents' overall experiences of research participation were positive. Parents preferred to be contacted initially via a letter, with an opt in approach viewed most favourably. Most commonly, participants preferred that research contact occurred within 12-24 months after their child's death, with some suggesting contact after 6 months was also appropriate. Parents also preferred research interviews conducted in their own homes, though flexibility and parental choice was crucial. CONCLUSIONS: Findings from this study offer further insight to researchers and research review committees, to help ensure that future studies are conducted in a way that best meets the unique needs of bereaved parents participating in research.

Gradually Disengaging: Parent-Health care Provider Relationships After a Child's Death in the Pediatric Intensive Care Unit.

When a child dies in the intensive care unit, many bereaved parents want relationships with their child's health care staff to continue in the form of follow-up care. However, the nature of these relationships and how they change across the parents' bereavement journey is currently unknown. This article explores early and ongoing relationships between parents and health care staff when a child dies in intensive care. Constructivist grounded theory methods were used to recruit 26 bereaved parents from four Australian pediatric intensive care units into the study. Data were collected via audio-recorded, semistructured interviews and analyzed using the constant comparative methods and theoretical memoing. Findings show that these relationships focus on Gradually disengaging, commonly moving through three phases after the child dies: Saying goodbye, Going home, and Seeking supports. These findings provide guidance to health care staff on what families need as they leave the intensive care unit and move through bereavement.

Critical care nurses' experiences of caring for a dying child: A qualitative evidence synthesis.

AIM: To synthesize qualitative research examining the experience of critical care nurses caring for a dying child. BACKGROUND: Caring for a dying child remains one of the most difficult aspects of nursing, potentially leading to personal and professional distress. A thorough understanding of this experience for critical care nurses allows for improved delivery of care and support for the nurse. DESIGN: A qualitative evidence synthesis was undertaken, informed by Thomas and Harden's thematic synthesis methodology. DATA SOURCES: Studies were retrieved from CINAHL Plus, Scopus, OVID Medline, and Embase, alongside hand-searching reference lists in February 2016. REVIEW METHODS: Two reviewers independently assessed each study using a multistep screening process and performed critical appraisal of each included study. Data were extracted onto a predeveloped tool and analysed using thematic analysis. RESULTS: There is a blurred line between the role of the nurse as a person or a professional while caring for the child and family throughout hospitalization and during and after the death. Each stage of care involves tasks and emotions that highlight the changing dominance of the nurse as either a person or professional. CONCLUSION: Personal, interpersonal, and contextual factors affect delivery of care and impact of the death of the child on the critical care nurse. Reviewing individual and institutional practices could improve provision of care, interprofessional collaboration, and support provided to staff involved.

Becoming a Team: The Nature of the Parent-Healthcare Provider Relationship when a Child is Dying in the Pediatric Intensive Care Unit.

PURPOSE: To explore bereaved parents' perspectives of parent and staff roles in the pediatric intensive care unit when their child was dying, and their relationships with healthcare staff during this time. DESIGN AND METHODS: Constructivist grounded theory was used to undertake this study. Semi-structured interviewers were conducted with 26 bereaved parents recruited from four Australian pediatric intensive care units. The constant comparative method, coupled with open, focused, and theoretical coding were used for data analysis. RESULTS: Becoming a team explores the changes that occurred to the parent-healthcare provider relationship when parents realized their child was dying and attempted to become part of their child's care team. When the focus of care changed from 'life-saving' to 'end-of-life', parents' perspectives and desires of their and the healthcare providers' roles changed. Parents' attempted to reconstruct their roles to match their changing perspectives, which may or may not have been successful, depending on their ability to successfully negotiate these roles with healthcare providers. CONCLUSIONS: Findings offer insights into parental understandings of both the parental and healthcare provider roles for parents of dying children in intensive care, and the ways in which the parent-healthcare provider relationships can influence and be influenced by changes to these roles. PRACTICE IMPLICATIONS: Successful parent-healthcare provider relationships require an understanding of the parental and healthcare provider role from the parents' perspective. The meanings of the parental and healthcare provider roles should be explored with parents of dying children, and supported as much as possible to enable the development of a collaborative relationship.

"Some were certainly better than others" - Bereaved parents' judgements of healthcare providers in the paediatric intensive care unit: A grounded theory study.

OBJECTIVE: To explore bereaved parents' judgements of healthcare providers, as part of a larger study examining their perceptions of the death of a child in the paediatric intensive care unit. RESEARCH METHODOLOGY: Constructivist grounded theory. SETTING: Four Australian paediatric intensive care units. MAIN OUTCOME MEASURES: Semi-structured, audio recorded interviews were undertaken with 26 bereaved parents 6-48 months after their child's death. Data were transcribed verbatim and analysed using open, focused and theoretical coding and the constant comparative method. FINDINGS: Bereaved parents judged healthcare providers as 'good' or 'poor' based on behaviours they exhibit. 'Good' behaviours were further subdivided by parents into four categories: 'Better than others', 'good', 'very good', and 'fantastic'. Common behaviours identified as 'good' included provision of practical assistance, facilitation of parental presence, and sharing of information. In contrast, the concept of 'poor' had no subdivision: all identified behaviours, including diminishing parental concern, mishandling hope, adopting an unprofessional demeanour, judging the child's worth, and mishandling communication, were equally detrimental. CONCLUSIONS: Findings demonstrate that bereaved parents have clear opinions on what constitutes 'good' and 'poor' behaviours when their child is dying. These judgements provide clear examples for healthcare providers who provide end-of-life care, ensuring they provide high quality care.

Learning style preferences of Australian accelerated postgraduate pre-registration nursing students: A cross-sectional survey.

Graduate entry programs leading to registration are gaining momentum in nursing. These programs attract student cohorts with professional, cultural, gender and age diversity. As a consequence of this diversity, such accelerated programs challenge traditional pedagogical methods used in nursing and require different approaches. To date, however, there has been limited research on the learning styles of students undertaking these programs to inform academics involved in their delivery. Kolb's Experiential Learning model has been used widely in a variety of educational settings because it is based on the theory of experiential learning. More recently VARK (Visual, Aural, Read/write and Kinaesthetic) model has become popular. The aim of this study was to investigate the learning styles of two cohorts of graduate entry nursing students undertaking an accelerated masters-level program. This was a cross-sectional survey of two cohorts of Master of Nursing Practice students enrolled at a large Australian university. The students were more inclined toward converging (practical) and least toward concrete experience (experiencing) learning styles. The majority of students were more inclined toward kinaesthetic and least toward aural learning style. Findings have implications for academics engaged in teaching graduate entry nursing students.

The changing nature of relationships between parents and healthcare providers when a child dies in the paediatric intensive care unit.

AIM: To explore bereaved parents' interactions with healthcare providers when a child dies in a paediatric intensive care unit. BACKGROUND: Although most children admitted to a paediatric intensive care unit will survive, 2-5% will die during their stay. The parents of these children interact and form relationships with numerous healthcare staff during their child's illness and death. Although previous studies have explored the parental experience of child death in intensive care generally, the nature of their relationships with healthcare providers during this time remains unknown. DESIGN: This study used a constructivist grounded theory approach. METHODS: Data were collected via semi-structured, audio-recorded interviews with 26 bereaved parents from four paediatric intensive care units over 18 months in 2015-2016. Constant comparative analysis and theoretical memos were used to analyse the data. FINDINGS: The theory "Transitional togetherness" demonstrates the changing nature of the parent-healthcare provider relationship across three key phases of the parents' journey. Phase one, "Welcoming expertise," focuses on the child's medical needs, with the healthcare provider dominant in the relationship. Phase two, "Becoming a team," centres around the parents' need to recreate a parental role and work collaboratively with healthcare providers. Finally, "Gradually disengaging" describes the parents' desire for the relationship to continue after the child's death as a source of support until no longer needed. CONCLUSIONS: Findings from this study offer valuable insights into the changing nature of the parent-healthcare provider relationship and highlight the key foci of the relationship at each stage of the parental journey.

Ethical and Practical Realities of Using Letters for Recruitment in Bereavement Research.

Recruitment of participants into bereavement research may present many challenges for the research team. At present, there is little consensus for researchers and ethics committees on the most appropriate method of recruitment. There is some evidence that participants prefer to be contacted about research studies via letters. However, recruitment involving the use of a letter can occur in a number of ways, each with ethical and practical benefits and limitations. In a study of the experiences of bereaved parents, we used letters in three ways: direct mailing from the research team with an opt-out option; permission to mail letters obtained by social workers from a hospital-based follow-up program during routine contact; and letters mailed from the hospital's PICU research nurse at the hospital with instruction on how to opt in. In this paper, the practical and ethical realities of each method are highlighted, using examples from our own experiences. Nineteen parents also provided reflections in follow-up phone calls. While direct researcher contact is perhaps the most feasible for researchers, ethical concerns may render it unacceptable. While contact via a known member of a follow-up program is more ethically appropriate for participants, it also presents significant practical issues. We suggest that contact via a representative of the healthcare institution provides the best balance of ethical and practical acceptability for both participants and the research team, but responsiveness to the ethical and practical requirements of the study is crucial in ensuring it can be successfully undertaken. © 2017 Wiley Periodicals, Inc.

Family Experience and PICU Death: A Meta-Synthesis.

BACKGROUND AND OBJECTIVES: The PICU is the most common site for inpatient pediatric deaths worldwide. The impact of this clinical context on family experiences of their child's death is unclear. The objective of the study was to review and synthesize the best available evidence exploring the family experience of the death of their child in the PICU. METHODS: Studies were retrieved from CINAHL Plus, OVID Medline, Scopus, PsycINFO, and Embase. Gray literature was retrieved from greylit.com, opengrey.edu, Trove, Worldcat, and Google scholar. Study selection was undertaken by 4 reviewers by using a multistep screening process, based on a previously developed protocol (International Prospective Register of Systematic Reviews 2015:CRD42015017463). Data was extracted as first-order constructs (direct quotes) or second-order constructs (author interpretations) onto a predeveloped extraction tool. Data were analyzed by thematic synthesis. RESULTS: One main theme and 3 subthemes emerged. "Reclaiming parenthood" encompasses the ways in which the parental role is threatened when a child is dying in the PICU, with the subthemes "Being a parent in the PICU," "Being supported," and "Parenting after death" elucidating the ways parents work to reclaim this role. The review is limited by a language bias, and by the limitations of the primary studies. CONCLUSIONS: When a child dies in a PICU, many aspects of the technology, environment, and staff actions present a threat to the parental role both during and after the child's death. Reclaiming this role requires support from health care providers and the wider community.