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Peer Reviewed Articles on Grief and Loss in Children

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When a kid dies: a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief- and loss theories

  • Floor Jenkentwo,
  • Paul A. Boelen3,4,
  • Laura M. A. Debenone,
  • Jurrianne C. Fahner1,
  • Agnes van den Hoogenii,
  • Saskia C. C. Thousand. Teunissenone,
  • Karin Geleijnsi &
  • Marijke C. Kars1

BMC Palliative Intendance volume 19, Article number:28 (2020) Cite this article

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Abstract

Background

The availability of interventions for bereaved parents have increased. However, nigh are do based. To raise the implementation of bereavement care for parents, an overview of interventions which are replicable and show-based are needed. The aim of this review is to provide an overview of well-defined bereavement interventions, focused on the parents, and delivered by regular wellness care professionals. Also, we explore the alignment between the interventions identified and the concepts contained in theories on grief in gild to determine their theoretical evidence base.

Method

A systematic review was conducted using the methods PALETTE and PRISMA. The search was conducted in MEDLINE, Embase, and CINAHL. We included articles containing well-divers, replicable, paediatric bereavement interventions, focused on the parent, and performed past regular health care professionals. We excluded interventions on pathological grief, or interventions performed by healthcare professionals specialised in bereavement care. Quality appraisal was evaluated using the chance of bias, adapted adventure of bias, or COREQ. In order to facilitate the evaluation of any theoretical foundation, a synthesis of x theories most grief and loss was adult showing five central concepts: anticipatory grief, working models or plans, appraisal processes, coping, and continuing bonds.

Results

Twenty-one articles were included, describing fifteen interventions. Five overarching components of intervention were identified roofing the content of all interventions. These were: the acknowledgement of parenthood and the child's life; establishing keepsakes; follow-up contact; education and data, and; remembrance activities. The studies reported mainly on how to conduct, and experiences with, the interventions, simply not on their effectiveness. Since most interventions lacked empirical evidence, they were evaluated against the key theoretical concepts which showed that all the components of intervention had a theoretical base.

Conclusions

In the absence of empirical evidence supporting the effectiveness of well-nigh interventions, their alignment with theoretical components shows support for most interventions on a conceptual level. Parents should be presented with a range of interventions, covered by a variety of theoretical components, and aimed at supporting dissimilar needs. Bereavement interventions should focus more on the continuous process of the transition parents experience in readjusting to a new reality.

Trial registration

This systematic review was registered in Prospero (registration number: CRD42019119241).

Peer Review reports

Background

Afterward the expiry of an infant, or child, parents are left with an intense and overwhelming sense of grief [1,2,3]. Parents experience an accumulation of feelings of loss from the kid's initial diagnosis, through the progressive deterioration in the child's condition, and eventually, to the decease of the child [4]. In addition to their own feelings of grief, parents also feel the burden of grief from the dying child and their siblings [three]. Grief is a normal reaction to the loss of a child. For most parents, moderate back up from regular health intendance professionals (HCPs), and relatives, is sufficient in helping to cope with feelings of grief [5]. All the same, around 10 to 25% of parents experience a serious disruption in emotional stability, which may result in poor psychosocial outcomes and agin mental and physical health effects [half dozen, 7].

A growing body of literature demonstrates that HCPs recognise parents' demand for support in handling feelings of loss and grief [eight,9,10]. This has resulted in an increasing number of interventions in practice aimed at all bereaved parents and provided by regular HCPs [10]. Although care standards state that providing bereavement care to parents is an important aspect of end-of-life care, such care is not notwithstanding routinely implemented in most hospitals [seven, 11]. This might be due to the fact that HCPs oft feel sick equipped to provide bereavement care [12]. Another explanation might be that bereavement interventions based in practice exercise not contain articulate guidelines or protocols, making them difficult to standardise [13]. The assumption is that clear protocols and guidelines make interventions replicable for other HCPs. An overview of, articulate, replicable interventions, containing guidelines and instructions, could lead to improved implementation and appropriate care commitment to all bereaved parents. This is considering the availability of evidence-based do guidelines could enable HCPs to feel more equipped [12]. Still, such an overview is currently missing.

Some other feature of this exercise-based nature of the interventions is that theoretical and empirical back up are frequently unclear or not provided at all [10, fourteen, fifteen]. Theoretical agreement is an essential ingredient in developing, evaluating, and implementing behavioural interventions and all-time clinical practices [16]. A social theory can be seen as a set of statements that explicate aspects of social life, and which demonstrate how people conduct and discover meaning in daily life [17]. However, the theoretical field of loss and grief is all the same evolving. Nonetheless, several theories take been put forrad to provide a supporting construction to the theoretical agreement of the procedure of grief [xviii,19,xx,21,22,23,24,25,26,27,28,29,xxx]. Agreement how different elements of interventions might relate to, or rely on, such theories, could improve our understanding of the underlying mechanisms of these interventions and provide an indication of their effectiveness.

This review volition provide an overview of well-defined bereavement interventions performed past regular HCPs, and aimed at supporting parents in coping with loss, during both the stop of their child's life and after their child'south death. Furthermore, nosotros will provide an overview of their effectiveness and whether the bereavement interventions currently proficient are substantiated past theory about loss and grief, and, as such, provide a theoretical ground for the effective elements of bereavement interventions.

Methods

Pattern

The field of paediatric palliative care is relatively immature and then clear terminology is yet to be established. Therefore, we used an iterative method for amalgam a search strategy: Palliative cAre Literature rEview iTeraTive mEthod (PALETTE) [31]. In add-on, our method complied with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) [32]. This systematic review was registered in Prospero (registration number: CRD42019119241).

Databases and searches

The starting time manufactures were identified through a preliminary search in PubMed and via skillful advice from senior researchers in the field of paediatric palliative care and bereavement. From these manufactures, different synonyms were gathered and terminology became clearer, a procedure known equally 'pearl growing'. Equally a result, articles were identified which were referred to as golden bullets because they met all inclusion criteria and thus should be included in the review. These processes resulted in additional searches. The procedure of pearl growing, identifying such new articles and adjusting the search string conducted in collaboration with an information specialist, was repeated until the search was validated [31]. That is, when all golden bullets were identified in the results of the search. Subsequently the information specialist involved conducted the terminal structured literature search in the post-obit databases: MEDLINE, Embase, and CINAHL. See Additional file 1 for the total search strings.

Study selection

The studies that were published in peer reviewed English language journals between Jan 1, 1998 and November 15, 2018, were included when they contained a well-defined bereavement intervention, offered by regular HCPs, to parents of deceased children or children with a life limiting status at the end-of-life phase. This period of time was chosen because palliative intendance was formalised in a definition by the Globe Health Arrangement (WHO) in 1998, providing a consensus around the term 'palliative care'. Interventions were divers as an intentional act performed for, with, or on behalf of, a parent or parents. An intervention must consist of well-defined, concrete proceedings. This means it can be replicated past other HCPs and is supported by instructions, a manual, grooming, a programme or other supporting documents. Nosotros divers regular HCPs equally professionals working in neonatal, or paediatric, care, where in their daily tasks, they are confronted with palliative care and care for loss and bereavement, without having necessarily received specialist preparation in these domains. Furthermore, interventions aimed at circuitous grief were excluded, since most parents do not require specialised services and such interventions are mostly performed past specialists on bereavement intendance. Full inclusion, and exclusion, criteria are listed in Table 1. When the full text was not available online, or when it was unclear whether the practices described were supported by a protocol or supporting documents, the first author of the commodity was contacted past email and requested to send additional information or a copy of the commodity. Both the title and abstract, and full text screenings, were performed past two researchers independently (EK, FJ), supported past the web-based screening program Rayyan (https://rayyan.qcri.org/welcome). Disagreements were resolved in dialogue with the inquiry squad. All the articles included were reference checked for additional relevant studies.

Table 1 Inclusion and exclusion criteria

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Data extraction and quality cess

Data on baseline characteristics, participants, interventions, and outcomes were extracted past three researchers (EK, KG, FJ) using a predesigned form based on Schulz's intervention taxonomy [34].

The quality assessment was performed by two researchers independently. The trials were assessed using the Cochrane risk of bias tool (KG, AvdH) [35], observational studies with an adjusted hazard of bias tool based on the Cochrane take a chance of bias assessment tool (KG, AvdH) [36], and qualitative studies were assessed with the COnsolidated criteria for REporting Qualitative enquiry (COREQ) (FJ, EK) [37], recommended by Cochrane Netherlands. The total scores ranged from 0 to seven in the trials and observational studies, and from 0 to 32 in the qualitative studies. The quality appraisals did not bear on inclusion in the review due to the explorative nature of this systematic review, and also due to the fact that articles containing depression appraisal scores could still incorporate valuable interventions and thus be relevant for the study aim [38].

Synthesis of grief theories

The interventions were compared with a theoretical synthesis, in order to recoup for the expected lack of evidence for most interventions, and to evaluate the possible effectiveness. Since there is not a singular dominant theory on grief [sixteen], leading theoretical models accept been identified using a pragmatic approach. At outset, experts in the field of bereavement (PB, MK, EK) and palliative care (MK) were consulted, preliminary searches were conducted in Google scholar and Medline, and; a compendium on bereavement was consulted [39]. Secondly, a pragmatic search was conducted in Medline using keywords such as grief, loss, bereavement, theory and equivalents (EK). Thirdly, the theories identified were validated past experts (PB, MK). They aimed for articles that showed the variation in bereavement theories and were a reflection of the most accepted theories from several dissimilar domains [18,19,20,21,22,23,24,25,26,27,28,29,30]. Past doing and so an overview of the leading theoretical concepts available was adult, which were extracted from the theoretical articles, clustered into communal theoretical concepts, and labelled appropriately. Most theories on grief emphasise that bereaved families need to adjust from the 'onetime world' to the 'new reality' [18,19,xx,21, 23, 26,27,28,29,thirty], where the deceased is no longer physically present. This readjustment can be seen as a continuous process that takes months to years to consummate, while the grief, itself, may never be resolved. The theories advise different approaches to how this adjustment is achieved. However, when comparison the leading theories we found that most theories take several key concepts at their core. This offered the opportunity to synthesize the theories on a conceptual level and, as such, capture the cadre mechanisms of most theories. These core mechanisms create the 'how' in which the theories explain the process of readjustment to the new reality. The synthesis of theories resulted in v concepts: anticipatory grief; an attachment to working models and plans; appraisal processes; coping behaviours, and; standing bonds. These 5 concepts volition be discussed in the following section. Importantly, these concepts do not represent elements of a sequential procedure, but rather elements of adjustment that may be re-addressed over fourth dimension. The Additional file 2 displays how the theoretical concepts are formed, based on different theoretical articles.

Anticipatory grief refers to feelings of loss and grief earlier an imminent loss [30]. Information technology involves forms of coping and reorganisation prior to loss and expiry, managing conflicting demands, facilitating a 'good' death, and preparedness. Preparedness comprises several dissimilar dimensions such as medical, psychosocial, spiritual, and practical dimensions [25]. Preparedness may help informal caregivers in coping with grief at a later stage.

Concepts concerning attachment working models and plans heighten multiple types of plans, namely: internal plans such every bit personal plans which may help a person empathize their environment [27, 28]; relational plans such as how the self relates to others [26, 28, 30], and; attachment plans such equally those created in early childhood and which guide a person in forming attachment bonds with others [19, 23]. Such plans brand the world understandable, recognisable, and predictable. Nonetheless, sometimes they practice not match reality, for example when a kid dies. This causes a severe stress reaction. This new reality must exist incorporated into the existing plans to establish a new stable situation [18, 20].

Appraisal systems are set when a new situation needs to be evaluated. In the state of affairs of the loss of a child, the appraisal systems conclude the fact that the reality does not lucifer the existing plans [xix, 20, 23, 24, 26]. Appraisal systems will so be active until new plans are developed [26], or the erstwhile plans are revised [26, thirty]. The loss is and then incorporated into the autobiographical memory and a revision of self-identity tin take identify [18, 27].

Stressful situations are managed past employing helpful coping behaviours [eighteen, 20]. Different coping styles exist, such equally those focusing on the problem or the emotion [24]. Some coping styles may be orientated towards loss or restoration [21, thirty], while some strategies may seek to make meaning out of the experience [28]. The reaction and coping behaviours differ between individuals and depend upon several factors including context and personality [26]. Effective coping includes the power to shift, flexibly, between different coping strategies [20, 21, 27].

Finally, the concept of continuing bonds refers to an ongoing relationship betwixt the individual and the deceased [21, 22, 26].

Results

The search yielded 5144 unique articles, of which nineteen met the inclusion criteria [40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58] and 2 were added post-obit an additional reference cheque (Fig. 1) [59, 60]. Twelve articles represented empirical information fatigued from the interventions of bereavement care programmes. Of these, four represented quantitative studies [40,41,42,43], vi represented qualitative studies [44,45,46,47,48,49], and two represented studies which included both quantitative and qualitative outcomes [50, 51]. Nine manufactures were descriptive in nature [52,53,54,55,56,57,58,59,60]. These articles contained well-defined bereavement interventions, however the interventions were not tested empirically and, therefore, the outcomes could not exist provided. An overview of all the articles included is provided in Table 2. Quality appraisals ranged between 2 and 5 for trials and observational studies, and between eight and 21 for qualitative studies. Quality scores on all studies can be constitute in Table 2. Qualitative studies received college appraisal scores.

Fig. one
figure 1

Study flow

Full size paradigm

Tabular array 2 Baseline characteristics

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The twenty-ane manufactures included xv unique bereavement interventions, identified with the letters of the alphabet A through to O. Two interventions were described in multiple articles (A and Grand). The intervention characteristics are summarised in Table 3.

Table 3 Intervention characteristics

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The characteristics of bereavement care interventions

The bereavement intendance programmes were predominantly initiated by hospital staff (A-North). They took place in the field of neonatology (due north = 5) (F,H,I,M,O), paediatrics (due north = ix) (B,C,D,East,G,J,K,L,N), or both neonatology and paediatrics (n = ane) (A). Some interventions were aimed at children with a certain diagnosis: Sudden Infant Death Syndrome (SIDS) (northward = ane) (O), and cancer (due north = 4) (B,E,G,N). 3 studies presented a bereavement intendance programme, while focussing on the affect on HCPs of losing a patient (A,Chiliad,J).

With regard to the timing, we institute that eleven interventions started after the child's expiry (A,B,C,D,Eastward,One thousand,I,M,L,1000,O), i intervention started during the cease-of-life phase (J), and iii interventions covered both before, and afterward, death (F,H,N).

In most interventions, the person intervening was either a nurse, appointed equally the principal carer and operating individually or as part of a team (A,C,E,H,I,One thousand,Grand), or a physician (A,C,D,1000,I). Other people intervening included clinical social workers (B,H,G), chaplains (A,L) or peer supporters - parents who take previously lost a child also - (A), photographers (J), trained counsellors (D), public wellness nurses (O), team members who had the almost contact with parents or experienced the lightest workload (F) or, bereavement care squad members not otherwise specified (N).

We identified five overarching components of interventions which cover the variety of practices described in the interventions. These are: (i) the acknowledgement of parenthood and the child'southward life; (ii) establishing keepsakes; (3) follow-upwardly contact; (iv) pedagogy and information, and; (v) remembrance activities.

  1. (i)

    The acknowledgement of parenthood and the child's life consisted of washing, holding, or dressing the child (H,I), giving parents privacy in the moments surrounding the decease of the child, for instance in a family unit room (H), providing the child with a certificate of life (I), or a blessing ceremony (F,H).

  2. (ii)

    Establishing keepsakes consisted of safeguarding a lock of pilus (H,I), hand, foot, or confront print (H,I), pictures (F,H,I,J), or items that belonged to the kid, such as toys, a blanket (H), ornaments (H), a retention stone (I), wearing apparel (I), a baby band or bracelet (H,I), memory books (F), poems (A,H), or other belongings (F,H). The created items were often provided to the parents in the form of a condolement basket or retentiveness box (B,H). Keepsakes, especially for siblings, could besides be provided (I).

  3. (iii)

    Follow-upward contact consisted of follow-up calls (A,B,E,F,Thousand,H,I,K,O), cards (B,E,G,H,I,Northward), visits (A,F,L,O), flowers (F), condolence letters (K), and appointments (A,C,D,G,M). Follow-up contact as well included facilitating contact with peers (A,Chiliad,N).

  4. (iv)

    Education and information on coping, grief, and practical data concerning the decease of the child, consists of folders and booklets with information (A,B,E,F,G,H,I,Yard,L,Northward), financial advice (F), videos containing information (L), educational support meetings for peers and relatives (Fifty), seminars or workshops on coping and grief (Chiliad), and information sessions (A,C,D,M,M) during which HCPs provided information near the treatment and autopsy (I), or answered questions (I).

  5. (v)

    Remembrance activities included ceremonies or services (F,H,Chiliad,Due north), and HCPs attending the funeral (E,50).

The empirical basis of the interventions and the outcomes of the studies

Most interventions identified consisted of a description of practices, sometimes based on years of experience, but did not include an empirical or theoretical basis. Several studies did provide substantiation for their interventions such equally a previous, non-specified, literature search (A,East), interviews and focus groups (B,Eastward,Grand), or practiced cognition and special educational activity (A,B,D,F,J,O). But 2 interventions were developed using a clear theoretical footing. One intervention was based on principles of stress and social support theory (B), and the other contained a psycho-educational bereavement guide based on the principles of cerebral behavioural theory (Thou).

The studies that evaluated an intervention, showed that parents reported a positive experience with bereavement photography and follow-upwards contact (A,B,C,East,G,J,L). Parents were grateful to receive photos of their child, and helped HCPs feel better well-nigh their role (J). The outcomes of most of the empirical studies focused on how the parents had experienced the follow-upwards contact with the HCPs who had taken care of their child. Follow-up contact was by and large valued. It helped parents cope with their grief, provided closure, and gave parents a secure feeling of the ongoing bond with the infirmary and their child (A,B,C,E,G,L). Parents found follow-up meetings with HCPs and/or peers helpful in learning to tolerate and understand grief better. Moreover, information technology stimulated further thinking and discussion between the parents about the topics addressed in the meeting and helped parents to express their ideas and feelings apropos grief to each other and to their family and friends (L,Thousand).

The alignment between intervention components and theoretical key concepts

Given the lack of knowledge concerning the effectiveness of the interventions, the potential worth of the components of intervention is evaluated by aligning the v intervention components identified (i-five) to the key theoretical concepts equally described in the Methods section. These are: anticipatory grief; attachment to working models and plans; appraisal processes; coping, and; continuing bonds. Hereafter, all the components volition exist discussed and hypothesised, considering how they align with the theoretical concepts identified (Tabular array four).

Table four The alignment of theoretical key concepts and intervention components

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The acknowledgement of parenthood and the child's life

This component includes facilitating parents to fulfil their part equally a parent, and to acknowledge the identity of their child. Facilitating parents in their parental part is a component HCPs provide earlier and subsequently decease. The principal strategy in these interventions is to enable parents to nurture their child and to admit their kid's uniqueness [54]. Parents are facilitated to experience the bond with the child, create memories, have a blessing ceremony, and say their farewells [59, 60]. Information technology allows parents to begin to contemplate the idea that their child is dying, while ensuring that their child is as comfortable as possible [60]. These practices support anticipatory grief, since they foster emotional preparedness, allow parents to accommodate slowly to the fact that their child is dying, and assist to create lasting memories for parents to cherish after expiry [54]. A document of life empowers parents to recognise the identity of their kid. In letting parents participate in the last treat their child, this also enables them to arrange, gradually, to the fact that their kid is dying, and makes the transition between the internal plans less abrupt.

Establishing keepsakes

HCPs have the initiative in creating keepsakes together with, or in accordance with, the parents. These keepsakes provide the parents with a tangible memory of the child. Especially in neonatology, where parents will not accept been outside the hospital with their child, keepsakes provide parents with a fashion to cherish a part of their child, when the child is no longer present. Establishing keepsakes can help parents experience attached and close to their child and to provide comfort [54]. Over time, the keepsakes can help the parents in remembering the child, and aid parents with processing, conceptually, the loss, while they revise the autobiographical memories and the memories of the child in order to adjust to the new reality. Over time, when the parents take adjusted to the new reality, the tangible memories of the child serve every bit a class for expressing the continuation of the bail between the parents and their child.

Follow-up contact

Follow-up contact with the infirmary may have various forms. Parents value ongoing contact with the infirmary staff, since the infirmary staff know the child and many parents developed a bond with them over time [45,46,47]. When parents feel that the HCPs call up their child, this is felt as an acknowledgement of the child's identity, and a validation that their child has made an impact and mattered [45, 46]. This acknowledgement results in positive reappraisal processes and adds positive pregnant to the past events. These positive reappraisals could also foster adaptive coping behaviours, for example the sharing of the story of the loss with friends and family. The continuous reappraisal and coping behaviours in plow outcome in altering the working models and plans considering the loss is processed conceptually. This helps parents to find a identify for, and to ascertain a new bond with, the deceased child in the new reality [47]. Follow-up contact with HCPs and peer supporters, simply their presence and conversations, help parents to cope with loss [40, 43]. During follow-up contacts, HCPs can offer parents an explanation of the grade of treatment and the rationale for certain decisions that were made. This is important every bit parents often depict being in a haze during the finish-of-life flow of their child [44, 46]. Furthermore, autopsy results are oftentimes shared in society to clarify the physical illness [53, 54]. HCPs also have the opportunity to reassure parents that at that place is aught that they could have done differently [58]. This helps parents to make sense of the preceding events and to clarify the memories surrounding the death of their child [46, 53]. This clarification, in turn, aids reappraisal of the situation and past events, and provides parents with a form of closure. It also allows parents to readjust their memories of the state of affairs, address doubts virtually themselves, and treasure memories of their child, which results in readjustment to new memories and thus creates new plans about themselves, their child, and the past events.

Didactics and information

Information folders, booklets, workshops, and seminars tin can help parents in regaining some control over the many different challenges they face in a new, unknown, and insecure, situation. Information technology makes parents feel more prepared in practical terms such as with fiscal help, funeral arrangements, and in finding extra emotional assist when needed [59]. An case of practical assistance might exist how to provide explanations to, and support for, the siblings, reassuring parents that what they are feeling is normal, actions which can be termed preparation and which offer a sense of validation [55, 59]. Only practical aid could likewise include providing information about when and who to turn to for actress support [55]. These forms of help back up parents in coping with the new situation considering it makes the new demands slightly more manageable. The information provided, and the validation of the emotions they experience, also aid parents in creating new cognition structures and plans with regard to their grief and the hereafter they face. It helps the appraisal processes and offers new working models.

Remembrance activities

The remembrance activities provide an opportunity to experience shut to the child again and to recollect memories about their life [sixty]. It is also a means of feeling supported by friends, family unit, hospital staff, and the community, that may help parents to cope with the loss [51]. These remembrance occasions provide a secure environment where parents feel connected to the child and feel the bond that they had, and that withal exists. Remembrance activities assist parents in finding a way to go on their bond with the child in the new reality. Religious or spiritual aspects of the events can also assist parents to make sense of, and find significant in, the child's death. Such "significant making" later the decease is a helpful coping mechanism for parents, in which they can revise their memories and plans surrounding the death of their kid in a positive and helpful manner.

Give-and-take

This review identified fifteen well-divers bereavement interventions provided by regular HCPs to support parents of seriously sick children both at the end of their child's life and subsequently death. All interventions were clustered into five overarching components of the intervention. These are: the acknowledgement of parenthood and the child's life; establishing keepsakes; follow-upwardly contact; education and information, and; remembrance activities. The majority of interventions started after the death of the child, and were performed by a nurse, assigned as the primary carer, or a physician. Most of the empirical studies included in this review evaluated how to conduct the intervention and experiences with the interventions, but not their effectiveness. To compensate for this lack of prove, the components of intervention were assessed against a theoretical synthesis on loss and grief, which revealed that all the components from which the interventions were built were covered by theories on a conceptual level. The theoretical synthesis did uncover that bereavement is characterised by the continuous process of adjusting to a new reality [xviii,19,20,21, 23, 26,27,28,29,30]. Five key theoretical concepts clarify this procedure: anticipatory grief; attachment working models and plans; the appraisal processes; coping behaviours, and; continuing bonds. The theoretical synthesis shows the demand for bereavement interventions to focus on the continuous nature of grief, and thus, starting before the expiry and guiding parents through the grieving process. Most interventions we identified relied on a combination of multiple components or time points. However, few interventions reviewed hither showed such a continuous process in supporting the parents.

In our comparison of the components of intervention, and the theoretical synthesis, we constitute HCPs pursued several underlying aims for providing bereavement care to parents. The interventions were offered by HCPs to raise the parents' feeling of preparedness towards the decease of their child. These comprise providing parents with information, nurturing the child, and experiencing support from HCPs or their peer supporters. Those designed to enhance their ability to create memories of, and with, their child include nurturing the kid, treasuring keepsakes, and recollecting memories at the subsequent remembrance ceremony. Finally, the interventions to provide parents with comfort and reassurance involve making memories and keepsakes, answering questions and providing comfort in follow-upwardly, providing information in general, and remembering and acknowledging the child. These elements are not captured in a unmarried moment, but require support at unlike moments and in a continuous nature [61]. A divergence nosotros noticed is that the importance of supporting parents in their parental role, and acknowledging the identity of the kid, may have a dissimilar meaning in neonatology compared to paediatrics [54, 62]. The fourth dimension in the infirmary is often the only time these parents can make memories with their kid and to nurture them. The HCPs are often the only people, apart from the family, to have seen the child alive.

Bereavement theories emphasise that dealing with loss takes grade in a transition towards a new reality [18,19,twenty,21, 23, 26,27,28,29,xxx]. Nevertheless, just four interventions included in this review commenced before the death of the kid [50, 57, 59, 60]. Yet, conversations between HCPs and parents about the condition of their child, and their preparedness for the death of their kid, tin contribute positively to the bereavement process afterwards their kid has died [25, 63]. The possible explanations for this are, firstly, that there is a delicate balance betwixt preserving hope and letting go of the child during the end-of-life phase. Most, but not all, parents are able to make this transition [4, 64]. Nearly parents are intellectually aware that their child's death is imminent, nonetheless, emotional awareness unremarkably follows at a subsequently stage, or not until after the death [65]. For the HCPs these phenomena, and the parental diversity, make it difficult to assess when parents are receptive to bereavement back up during the end-of-life stage. Furthermore, this diversity tends to provoke insecurity among HCPs. However, HCPs should be able to influence parents' awareness and openness towards bereavement support, for case past informing parents nearly the finality of curative options by sharing information honestly and considering whether to stop ongoing curative treatment [65]. Secondly, given the diversity both in parental responses to letting go of their child, and in their emotional sensation, information technology is hard to create a standardised intervention, including a protocol, for bereavement treat parents during the end-of-life phase. Since our inclusion criteria consisted of interventions that needed to be replicable, and supported by a protocol or documents, these kind of interventions could have been excluded. This could mean that there is, in fact, attention for feelings of loss and grief, prior to the death of the child, by HCPs in their electric current daily practice. Withal, these practices are not standardised and thus were non covered in this review.

The comparison of key theoretical concepts and components of intervention showed that interventions all account for small fragmented pieces in the grieving process. Merely, also, that there are no interventions that emphasise the continuous parental adjustment procedure as a whole. The regular HCPs who had been involved in the kid's care since diagnosis could be a pregnant cistron in this continuous care. Studies have shown that parents crave at least one meaningful follow-up contact with the HCPs who cared for their child [14, 66]. We propose that bereavement care, including follow-up conversations, are important parts of the regular HCPs' activities. There are 3 main reasons for the integration of follow-upward care into the HCPs activities. Firstly, parents oft have outstanding questions virtually their kid'due south intendance, disease, and their role in the menses of the illness [67]. The regular HCPs are able to answer these questions since they take been part of the care prior to death. Secondly, the trustworthiness and bonds that already exist between the HCPs and parents are very of import [54]. Thirdly, parents seek proximity to their child - an acknowledgement of his or her life, and the touch on the life has fabricated; it helps parents in the grieving process when the HCPs speak of their memories of the child, reflect on his or her unique identity, and are effected past the child's death [14, 45]. Another important element of the conversations between the HCPs and parents could be psycho-education [68, 69]. Psycho-education encompasses information near what parents are experiencing while preparing them for what they could run into during their journey through the grieving process. Information technology has been shown to have positive effects on the self-efficacy of informal caregivers. Psycho-education could strengthen parents in their transition to a new reality where the child is no longer physically present, if they sympathize which challenges they are going to face, and fix them with helpful coping strategies [68]. Psycho-educational activity might as well take a positive effect on mental appraisals when a setback in the grieving process occurs and in validating the feelings parents experience equally normal [lxx].

Once a child dies, their parents are left with an overwhelming sense of grief. They describe the fourth dimension passing every bit a blur [44, 54]. Parents are not aware, during that period, of all the interventions and assistance HCPs could offer them. However, options could be presented to parents, and the most appropriate could be chosen. Therefore, it is important that HCPs offering parents a wide range of interventions [71]. This is likewise of import because the central theoretical concepts are not sequential. Instead they form a continuum and the most dominant of these key concepts alter according to the demands at a given fourth dimension [18, twenty, 21, 27]. Also, effective coping is defined by a process of alternating between two or more different coping strategies, depending on the demands at a specific time [72]. If HCPs could determine, in what stage parents were at a given time, or with which processes they experience difficulties, the appropriate components of intervention to aid that process could be selected.

Strengths and limitations

The search was constructed using a recently adult method, PALETTE, in addition to PRISMA. This was helpful in identifying all the relevant articles in relatively young domains where terminology is nonetheless diffuse. To our knowledge, given the difficulty of measuring outcomes in the field of paediatric palliative intendance, this is the offset systematic review to requite insight into the theoretical effectiveness of bereavement interventions. In particular, the inclusion of replicable interventions provides HCPs with opportunities to implement them in their practice. A limitation of this systematic review concerns the inclusion and exclusion criteria. These eliminated less developed practices and potentially helpful professional attitudes and behaviours out of sight. Information technology is possible that these contain strategies that tin be considered supportive in parental grief. Also, we included replicable interventions which could be implemented in practice since these interventions are supported past a protocol or clear guidelines. However, well-nigh interventions are not tested and offer little evidence in their support. This is required earlier implementing an intervention. Testing these interventions might then be difficult due to the setting of paediatric palliative intendance. Therefore, the theoretical synthesis and alignment could simply provide a form of theoretical support for the interventions we reviewed.

Decision

This review provides an overview of well-defined, replicable, bereavement interventions. The theoretical synthesis in this review provides a basis for the effectiveness of the components of intervention. All v of these embrace multiple primal concepts derived from theory. HCPs can choose multiple interventions for different components to provide parents with a continuous grade of bereavement care, aiding the transition that parents take to go through following their loss. Hereafter inquiry is needed on how this continuous support can exist established, which time points are crucial for providing bereavement intendance, and how new interventions can exist adult that marshal with this transition, and thus, ultimately, help parents in adjusting to their new reality.

Availability of information and materials

Not applicable.

Abbreviations

COREQ:

COnsolidated criteria for REporting Qualitative inquiry

HCP(s):

Health Care Professional(s)

NICU:

Neonatal Intensive Care Unit

PALETTE:

Palliative intendance Literature rEview iTeraTive

PICU:

Paediatric Intensive Care Unit

PRISMA:

Preferred Reporting Items for Systematic Reviews and Meta-Analyses

SIDS:

Sudden Baby Decease Syndrome

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Acknowledgements

Nosotros thank René Spijker for sharing his expertise in constructing the search string and for performing the electronic literature search. We thank Paulien Wiersma for sharing her expertise in helping to conduct the preliminary searches.

Funding

The authors disclosed receipt of the following financial back up for the research, authorship, and/or publication of this article. This review is role of a larger project: the emBRACE report (embedded bereavement care in paediatrics). This piece of work was supported past ZonMw [grant number 844001506]. The funding party did non accept function in the blueprint of the systematic review, interpretation of the results, and in writing or revising the manuscript.

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Affiliations

  1. Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Universiteitsweg 100, 3584 CG, Utrecht, The Netherlands

    Eline M. Kochen, Laura K. A. Deben, Jurrianne C. Fahner, Saskia C. C. M. Teunissen, Karin Geleijns & Marijke C. Kars

  2. Section Adult female and Baby, Wilhelmina Childrens Hospital, Lundlaan 6, 3584 EA, Utrecht, Kingdom of the netherlands

    Floor Jenken & Agnes van den Hoogen

  3. Section of clinical psychology, Utrecht University, Heidelberglaan one, 3584 CS, Utrecht, The Netherlands

    Paul A. Boelen

  4. Arq Psychotrauma Adept Group, Nienoord 5, 1112 XE, Diemen, The netherlands

    Paul A. Boelen

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EK, FJ, Pb, JF, AH, ST, KG, and MK were involved in the development of the conception and pattern of this piece of work. EK, FJ, KG, AH were involved in commodity selection, data extraction, and quality appraisal. EK, MK, Pb performed the theoretical synthesis on grief theories. EK, FJ, Pb, LD, JF, AH, ST, KG, and MK were involved in the interpretation of data and in drafting or substantially revising the manuscript for intellectual content. All authors reviewed and approved the final manuscript.

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Correspondence to Eline M. Kochen.

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Kochen, E.M., Jenken, F., Boelen, P.A. et al. When a child dies: a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief- and loss theories. BMC Palliat Care 19, 28 (2020). https://doi.org/10.1186/s12904-020-0529-z

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Keywords

  • Bereavement
  • Parents
  • Paediatrics
  • Systematic review
  • Models theoretical
  • Interventions

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