Bereavement Care after the Unexpected Death of a Child in a Pediatric Intensive Care Unit: A Systematic Integrative Review

Interpersonal qualities

Ten articles described attributes families needed to experience within clinician interactions in the PICU to establish meaningful connections. One was a quantitative study by Meert et al., ³⁷ who found families needed clinicians to be caring and responsive. A lack of caring emotional attitude displayed by PICU staff was associated with detrimental short-term and long-term parental bereavement outcomes, specifically elevated grief intensity scores near the time of death and two to five years afterward. ³⁷ The remaining nine articles reported qualitative findings based on parental perspectives and experiences. Four articles reported the importance of compassion, warmth, and respect in clinician interactions with parents,^24,25,33,37 while three found family members needed clinicians to be available to answer questions and provide emotional support.^24,29,39 Of these, one article related specifically to unexpected death. ²⁴ In the context of parents “negotiating a catastrophic loss,” Hoover et al. ²⁴ reported parents felt clinician compassion, warmth, and respect eased “the emotional difficulty of their child’s impending death and organ donation” ²⁴ (p. 110).

Positive connections

Three articles described positive connections needed by families.^30,36,38 Butler et al. ³⁰ found families needed to be involved in their child’s care to build trusting relationships with staff, and they also needed to maintain connection with known clinicians after leaving the hospital. Similarly, Meert et al. ³⁸ found most parents wanted to meet with their PICU physician after leaving the hospital, while Macnab et al. ³⁶ recommended ongoing connections with PICU nurses, finding more than 70% of their study participants found PICU nurses supportive during their bereavement.

Therapeutic alliance

Approaches to meeting family members’ need for connection included activities in the PICU and beyond. Four articles reported the value of developing a therapeutic alliance with family members.^30,45,46,48 Therapeutic alliance describes the strength and quality of relationships between family members and clinicians. ⁴⁸ Suttle et al. ⁴⁸ found parents who developed stronger therapeutic alliance with PICU physicians demonstrated less severe symptoms of complicated grief during bereavement. Six articles described aspects that enhanced development of therapeutic alliance,^{24,29–31,33,39} including attention to tone, ³⁹ continuity of staff, ³³ role negotiation with family members,^30,31 supporting parental involvement in care,^24,30 and provision of practical assistance such as moving equipment to enable parents to get closer to their dying child. ²⁹ Supporting parental involvement in care was particularly important in the context of unexpected death. ²⁴ In Hoover et al.’s qualitative exploratory analysis, ²⁴ parents realized “professionals cannot change the reality of the child’s death,” but could improve the provision of end-of-life care by appreciating parents’ preferences at end of life (p. 110). Additionally, four articles reported negative interactions that did not foster therapeutic alliance, including unprofessional behavior such as arrogance and dismissive or judgmental comments.^33,36,39,45

Bereavement follow-up

Beyond the PICU setting, five articles recommended provision of hospital-based bereavement follow-up,^{24,25,30,33,36} with three identifying ongoing connection from PICU clinicians as a core component.^30,33,38 Specifically for unexpectedly bereaved families, Bellali et al. ²⁵ highlighted the importance of follow-up to reduce feelings of confusion and abandonment. During their PICU stay, parents reported “everything happened so fast” and this caused increased distress throughout the course of their bereavement afterward when they felt that they “were quickly forgotten” by clinicians involved in their child’s care (p. 221). Other aspects of follow-up included offering resources to support families,^25,28 as well as counseling and referral to specialist grief services. ³³ Butler et al. ³⁰ recommended intensive connection in early bereavement, gradually tapering off over a period of ∼12 months. They found for parents, “ongoing contact demonstrated that their child meant something to the staff” (p. 95). ³⁰ These findings showed a sense of connection with clinicians was needed by families during their time in the PICU, and should be maintained through bereavement follow-up after leaving the hospital.

Information delivery

Four qualitative articles reported family perceptions of communication as key findings, each identifying parents needed information about their child’s care and treatment.^25,29,33,39 In the context of organ donation, Bellali et al. ²⁵ found parents needed different information before, during and after their child’s death, such as prognostic information beforehand and feedback about organ donation outcomes afterward. El Halal et al. ³³ found the quality of communication in PICU was key to the best experience for children and families at end of life. ³³ Similarly, Meert et al. ³⁹ found that effective physician–parent communication was vital for parents to understand their child’s prognosis. Butler et al. ²⁹ found “good” health care providers facilitated information sharing, whereas “poor” health care providers mishandled communication (p. 21). ²⁹

Information quality

A further five articles—two quantitative and three qualitative—reported aspects that differentiated communication of quality information from poor communication.^{24,28,36,37,39} Quality information was characterized by adequacy, ³⁷ honesty and completeness, ³⁹ understandable language, ²⁸ and relevance to the child’s condition, such that parents were able to make informed treatment decisions. ²⁴ For unexpectedly bereaved families, information quality was very important because their hospital experience was a “blur,” during which they had difficulty “soaking in the information.” ²⁴ (p. 108) When information was unclear, parents became confused about their child’s care options, especially when donation was discussed. ²⁴ Despite other bereavement interventions receiving higher ratings in Macnab et al.’s survey study, ³⁶ communication or provision of information was identified as the most critical bereavement care element. They recommended individualized communication to meet the needs of each family. ³⁶ Importantly, Brooten ²⁸ found the stress of being in the PICU affected retention of information, and parents needed information repeated several times to ensure understanding and prevent decision-making regret.

Communication content

Communication content was described in five original research articles.^24,29,30,36 Macnab et al. ³⁶ found parents needed practical information, such as advice about funeral arrangements and explanation of autopsy results. Four qualitative articles, one relating exclusively to unexpected death, described the way parents needed hope and how this affected communication.^24,30,31 Butler et al. ³⁰ found parents needed hope despite clear indications that their child was dying, and this need remained until “every bit of information comes in” (p. 29). ³¹ Mishandling communication by extinguishing hope too soon was found to be a hallmark of “poor” communication by health care providers. ²⁹

Communication as a bidirectional process was described in two articles, with Meert et al. ³⁸ finding families needed opportunity to provide reciprocal information by way of expressing their emotions and providing feedback to PICU staff. This feedback was seen as an important exchange of information whereby parents’ communicating their negative experiences could influence future staff communication and may prevent other families from experiencing similar problems. ³⁸

Communicating bad news

A secondary analysis of a qualitative study focused on the way physicians communicated bad news to parents in the PICU. ³⁹ In this study, bad news referred to sharing information about grave diagnoses, unfavorable prognosis, limitations of treatment options, or complications. ³⁹ Although just one aspect of communication, Meert et al. ³⁹ found communication of bad news was extremely important to most parents. Withholding prognostic information left parents feeling angry, betrayed, or distrustful. ³⁹ Meert et al. ³⁹ recommended physicians provide frequent updates so that bad news is understood incrementally, with a caring emotional tone and at a pace matching parents’ capacity to comprehend. These results were supported by two other qualitative articles, which recommended avoiding jargon or technical language, ³³ and not using a callous, or “cold” insensitive tone (p. 4). ³⁸

Bereavement meetings

One qualitative interview, ³⁸ two quantitative observational studies,^43,44 and two guidelines,^10,53 focused specifically on bereavement meetings as an approach to meeting parents’ communication needs after their child’s death. Meert et al. ³⁸ found provision of information was the most important feature of bereavement meetings and helped parents to make sense of what had happened to their child. In a separate study, Meert et al. ⁴³ found that a structured approach to bereavement meeting arrangements was helpful for 92% of parents who participated. This concept was supported by a guideline that proposed a structured framework to guide bereavement meetings. ⁵³ Most parents desired a meeting approximately three months after their child’s death,^10,43 and they wanted their spouse or partner, parents, and child’s nurse to be present. ⁴³ Suttle et al. ⁴⁴ found parents of children who died of sudden and unexpected causes were statistically significantly less likely (p = 0.047) to attend bereavement meetings due to traumatic associations with the hospital setting, and recommended more research to develop targeted interventions to better support these families.

Parents’ needs

Parental experiences were specifically considered in seven research articles^{24,26,28,32,34,42,55} and one guideline. ²⁹ Of these, three articles related exclusively to unexpected death.^24,25,29 Hoover et al. ²⁴ found parental experiences were affected by the sudden and unexpected nature of their child’s death. Parents needed clinicians to recognize the sense of shock that made their child’s death very difficult to cope with and to be responsive to their concerns at end of life. ²⁴ Parents also needed to connect with others who had similar experiences. ²⁴ Butler et al. ²⁶ found parents needed support to navigate police presence in the PICU as part of a routine investigation into their child’s unexpected death, and these findings were consistent with the Royal College of Pathologists Guidelines.^26,55

Including both expected and unexpected deaths, Meert et al. ⁴² validated a comprehensive Bereaved Parent Needs Assessment instrument, finding that parental bereavement needs included participating in their child’s care, having confidence in the professionals caring for their child, having their culture and religion respected, and having their emotions validated. Brooten et al. ²⁸ found parents also needed to take care of themselves to be able to function, retain their employment, and care for their family.

Three quantitative articles separated the needs of mothers from fathers, exploring coping strategies at various time points after the death of their child.^28,32,34 Brooten et al. ²⁸ found mothers needed self-care most, followed by talking about and remembering their child. ²⁸ Caicedo et al.’s ³² findings were similar but ranked religious activities as more important for mothers than self-care and remembrance. ³² Hawthorne et al. ³⁴ found that engaging in spiritual activities was significantly associated with increased personal growth in mothers, but not fathers. ³⁴ Fathers ranked self-care as their highest priority for coping, followed by the need to feel like they were moving forward after the death.^28,32

Grandparents’ needs

One article reported findings about grandparent bereavement needs. ⁵⁰ Youngblut et al. ⁵⁰ compared the physical and mental health of grandmothers after the death of a child in an intensive care unit, mainly in the PICU but also NICU. They found that grandmothers showed grief close to that of mothers, similar levels of blame, anger, panic, and disorganization, but fewer acute illnesses and depression. ⁵⁰ They reported grandmothers needed to talk through their grief, and relied on social supports such as family and friends for this support. ⁵⁰

Siblings’ needs

Bereavement needs of siblings were examined in five research articles,^27,49,51,52 and one guideline. ⁵⁴ Youngblut et al. ⁵¹ found that children who did not see their sibling in the PICU or NICU around the time of death showed increased anxiety, and those who did not attend the funeral had higher depression scores at four and six months. Brooten et al. ⁵⁸ found adolescent siblings felt shock and disbelief when they were not present at the hospital but heard their sibling had died. These findings, along with the Lullaby Trust guidelines, ⁵⁴ suggested children needed to see their sibling in hospital, be included in the end-of-life process, receive age-appropriate explanations, and attend the funeral to understand and cope with the death.^27,51,54

Brooten et al. ²⁷ and Youngblut et al.^49,52 surveyed and interviewed primary school-age and adolescent children, finding they needed to talk to their parents, family, friends, and even the deceased sibling, as well as to incorporate play and quiet activities into their grief. These studies did not separate sibling needs according to type of death; however, Youngblut et al.’s ⁵² study included 55% acute or violent deaths. Within this sample of primarily unexpectedly bereaved siblings, 13% wished they had saved or helped their sibling, such as “stopping the sibling from crossing the street into an oncoming car.” ⁵² (p. 230). Some siblings preferred to avoid their grief by focusing on other things, ⁴⁹ while others wished to remember, ⁴⁹ and some relied on prayer and faith. ²⁷ School-age and adolescent siblings experienced changes in friendships, ⁴⁹ activities, and school grades, indicating a need for increased educational support.^27,49,51,52 Brooten et al. ²⁷ found adolescents needed to talk about their grief but struggled to open up in the presence of their parents, suggesting adolescent siblings benefited from individualized attention and concern to share their grief.

Grief responses

Approaches to meeting the grief needs of different family members revolved around awareness and differentiating “normal” responses to grief from potentially concerning responses. Various expected grief responses were described in seven original research articles,^{25,27,28,34,36,37,46,50} and three guidelines.^54–56 These included crying, despair, distress, and sadness,^{25,27,36,54–56} disbelief, guilt, anger and irritability, as well as physical changes such as difficulty sleeping and loss of appetite.^54,56 Of these, two original research articles^25,37 and three guidelines,^54–56 specifically mentioned unexpected death, characterizing expected grief responses as “increased” ²⁵ (p. 220) or “especially devastating” ⁵⁴ (p. 31) for these families. The increased intensity of expected grief responses was attributed to the “profound effects of shock and trauma” that accompany unexpected death. ⁵⁴ (p. 31) Three articles described increased rates of acute and chronic physical illnesses in bereaved parents,^28,37,46,50 while three guidelines described grief as an experience unique to each person.^54–56 The importance of acknowledging family members who grieved differently from each other and validating and supporting individual grief responses was implied but not explicitly reported in three research articles.^28,34,46,50

Mental health symptoms

Potential pathological effects of grief and the mental health risks to bereaved parents and other family members were described in two guidelines,^10,54 and five original research articles.^{46–48,50,51} These specifically considered mental health outcomes, finding increased risk of anxiety, depression, complicated grief, and posttraumatic stress among bereaved parents and siblings.^{46–48,50,51} Risk of developing these mental health symptoms was increased for those who grieved sudden and unexpected deaths. ⁴⁶ Awareness of the risk factors for complex grief responses emerged as an important approach to enable the provision of proactive supportive interventions.^10,46,54

Risk factors and determinants

Risk factors and determinants for complex grief responses were identified in nine research articles.^{24–26,28,32,37,40,41,46} Suttle et al. ⁴⁶ found that sudden, unexpected death was a risk factor for increased mental health symptomology, along with black race and insecure attachment style, including attachment anxiety and avoidance of emotional closeness. Other determinants of complex early grief responses included decision-making regret relating to the child’s treatment,^28,32 police presence in the PICU, ²⁶ physical well-being of parents, ³⁷ spousal disagreement,^25,40 request for organ donation,^24,25,40 and being a nonbiological parent or guardian. ⁴¹ Suttle et al. ⁴⁶ concluded awareness of risk factors should direct the provision of bereavement support, and supportive interventions should be offered to parents at high risk for at least the first year after their child’s death.

Quality end-of-life care

High-quality end-of-life care for the child as an essential support need was reported in seven articles.^{24,25,30,32,33,36,38,42} Hoover et al. ²⁴ recommended PICU clinicians respect parental perceptions of their child’s preferences at end of life, acknowledge parents as protectors, and honor their child’s bodily integrity. Specifically in the context of unexpected death, Bellali et al. ²⁵ highlighted the importance of validating parental decision-making, a concept that was supported by three other studies.^24,25,33,38 El Halal ³³ reported that support centralized in the family was the key to quality of care for both expected and unexpected deaths. Having adequate or sufficient time was an important aspect of family-centered care, ⁴² including time to spend with their child at end of life,^{24,25,30,32,36} and time without staff present. ²⁸ Memory-making was also identified as a valued component of end-of-life care, with Macnab et al. ³⁶ finding creation of tangible mementoes such as hand or footprints highly appreciated. Finally, Butler et al. ³⁰ found families also needed support to meaningfully farewell their child.

Legacy and coping

Seven research articles outlined aspects of support required to meet the ongoing needs of parental grief.^{24,25,35,37,38,46,51} Meert et al. ³⁷ found parents needed to develop intrinsic strategies, such as cognitive coping, or the ability to preserve a positive self-concept and sense of self-worth, and to rebuild personal identity after the loss. Coping mechanisms were related to activities such as honoring their child’s legacy,^24,35 maintaining a sense of their child’s continuing presence, ³⁵ and channeling grief into meaningful actions. ³⁵ Legacy refers to an enduring representation of the child’s life. ³⁵ Jones et al. ³⁵ found that unexpected death complicated perceptions of legacy because parents did not have time for meaningful experiences with their child prior to the death. Legacy-building activities after death, including family rituals, artistic expressions of their child’s life, and altruistic pursuits were described as important by parents who experienced an unexpected bereavement. ³⁵ To develop coping strategies, build their child’s legacy, and achieve positive bereavement outcomes, parents needed ongoing emotional support for at least the first 12 months of bereavement.^25,38,46,51

PICU environment

Three research articles reported the importance of a supportive PICU environment.^33,36,42 Meert et al. ⁴² found parents who perceived greater bereavement need fulfillment experienced less complicated grief symptoms, but their needs were challenging to meet in the PICU setting due to physical and operational constraints. Approaches to meet bereavement needs included compassionate policies that welcomed visits from relatives and the child’s friends at end of life,^33,36,42 and creation of accommodating PICU physical spaces.^33,46 Examples included removal of excessive technology and medical devices from the child’s room, ³⁶ amenities for parents to sleep near their child, ⁴² provision of private spaces for family at the end of life, ³⁶ close proximity to food and refreshments, and access to cultural or religious facilities such as a chapel. ⁴² Environmental factors were not specifically linked to the experiences of unexpectedly bereaved families in these articles. However, Meert et al. ⁴² did note a non-statistically significant inverse relationship between death from trauma and the fulfillment of bereavement needs in the PICU, suggesting that the needs of parents who experience unexpected bereavement may not be adequately met in the current PICU environment.

Follow-up support

Approaches to supporting families after leaving the PICU were recommended in five original research articles.^{25,26,30,37,44} Butler et al. ³⁰ concluded families benefited from close, supportive relationships with clinicians to facilitate the transition from hospital to home and a post-PICU reality.^25,37 Important facets of support needed at this time included guidance for engaging with the coroner, ²⁶ and support to return to the hospital for bereavement follow-up meetings. ⁴⁴ Suttle et al. ⁴⁴ recommended provision of alternative options for families who felt unable to return to the hospital due to traumatic memories of their time there, which was more frequently seen among unexpectedly bereaved parents.