When a child dies: a systematic review of well-defined ...

RESEARCH ARTICLE Open Access

When a child dies: a systematic review ofwell-defined parent-focused bereavementinterventions and their alignment withgrief- and loss theoriesEline M. Kochen1* , Floor Jenken2, Paul A. Boelen3,4, Laura M. A. Deben1, Jurrianne C. Fahner1,Agnes van den Hoogen2, Saskia C. C. M. Teunissen1, Karin Geleijns1 and Marijke C. Kars1

Abstract

Background: The availability of interventions for bereaved parents have increased. However, most are practicebased. To enhance the implementation of bereavement care for parents, an overview of interventions which arereplicable and evidence-based are needed. The aim of this review is to provide an overview of well-definedbereavement interventions, focused on the parents, and delivered by regular health care professionals. Also, weexplore the alignment between the interventions identified and the concepts contained in theories on grief inorder to determine their theoretical evidence base.

Method: A systematic review was conducted using the methods PALETTE and PRISMA. The search was conductedin MEDLINE, Embase, and CINAHL. We included articles containing well-defined, replicable, paediatric bereavementinterventions, focused on the parent, and performed by regular health care professionals. We excludedinterventions on pathological grief, or interventions performed by healthcare professionals specialised inbereavement care. Quality appraisal was evaluated using the risk of bias, adapted risk of bias, or COREQ. In order tofacilitate the evaluation of any theoretical foundation, a synthesis of ten theories about grief and loss wasdeveloped showing five key concepts: anticipatory grief, working models or plans, appraisal processes, coping, andcontinuing bonds.

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

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* Correspondence: [email protected] Center for Health Sciences and Primary Care, University MedicalCenter Utrecht, Universiteitsweg 100, 3584 CG Utrecht, The NetherlandsFull list of author information is available at the end of the article

Kochen et al. BMC Palliative Care (2020) 19:28 https://doi.org/10.1186/s12904-020-0529-z

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Conclusions: In the absence of empirical evidence supporting the effectiveness of most interventions, theiralignment with theoretical components shows support for most interventions on a conceptual level. Parents shouldbe presented with a range of interventions, covered by a variety of theoretical components, and aimed atsupporting different needs. Bereavement interventions should focus more on the continuous process of thetransition parents experience in readjusting to a new reality.

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

Keywords: Bereavement, Parents, Paediatrics, Systematic review, Models theoretical, Interventions

BackgroundAfter the death of an infant, or child, parents are leftwith an intense and overwhelming sense of grief [1–3].Parents experience an accumulation of feelings of lossfrom the child’s initial diagnosis, through the progressivedeterioration in the child’s condition, and eventually, tothe death of the child [4]. In addition to their own feel-ings of grief, parents also experience the burden of grieffrom the dying child and their siblings [3]. Grief is a nor-mal reaction to the loss of a child. For most parents,moderate support from regular health care professionals(HCPs), and relatives, is sufficient in helping to copewith feelings of grief [5]. However, around 10 to 25% ofparents experience a serious disruption in emotional sta-bility, which may result in poor psychosocial outcomesand adverse mental and physical health effects [6, 7].A growing body of literature demonstrates that HCPs

recognise parents’ need for support in handling feelings ofloss and grief [8–10]. This has resulted in an increasingnumber of interventions in practice aimed at all bereavedparents and provided by regular HCPs [10]. Although carestandards state that providing bereavement care to parentsis an important aspect of end-of-life care, such care is notyet routinely implemented in most hospitals [7, 11]. Thismight be due to the fact that HCPs often feel ill equippedto provide bereavement care [12]. Another explanationmight be that bereavement interventions based in practicedo not contain clear guidelines or protocols, making themdifficult to standardise [13]. The assumption is that clearprotocols and guidelines make interventions replicable forother HCPs. An overview of, clear, replicable interven-tions, containing guidelines and instructions, could lead toimproved implementation and appropriate care deliveryto all bereaved parents. This is because the availability ofevidence-based practice guidelines could enable HCPs tofeel more equipped [12]. However, such an overview iscurrently missing.Another characteristic of this practice-based nature of

the interventions is that theoretical and empirical sup-port are often unclear or not provided at all [10, 14, 15].Theoretical understanding is an essential ingredient indeveloping, evaluating, and implementing behavioural

interventions and best clinical practices [16]. A socialtheory can be seen as a set of statements that explain as-pects of social life, and which demonstrate how peopleconduct and find meaning in daily life [17]. However,the theoretical field of loss and grief is still evolving.Nevertheless, several theories have been put forward toprovide a supporting structure to the theoretical under-standing of the process of grief [18–30]. Understandinghow different elements of interventions might relate to,or rely on, such theories, could improve our understand-ing of the underlying mechanisms of these interventionsand provide an indication of their effectiveness.This review will provide an overview of well-defined be-

reavement interventions performed by regular HCPs, andaimed at supporting parents in coping with loss, duringboth the end of their child’s life and after their child’sdeath. Furthermore, we will provide an overview of theireffectiveness and whether the bereavement interventionscurrently practiced are substantiated by theory about lossand grief, and, as such, provide a theoretical basis for theeffective elements of bereavement interventions.

MethodsDesignThe field of paediatric palliative care is relatively youngand so clear terminology is yet to be established. There-fore, we used an iterative method for constructing asearch strategy: Palliative cAre Literature rEview iTera-Tive mEthod (PALETTE) [31]. In addition, our methodcomplied with the Preferred Reporting Items for System-atic Reviews and Meta-Analyses (PRISMA) [32]. Thissystematic review was registered in Prospero (registra-tion number: CRD42019119241).

Databases and searchesThe first articles were identified through a preliminarysearch in PubMed and via expert advice from senior re-searchers in the field of paediatric palliative care and be-reavement. From these articles, different synonyms weregathered and terminology became clearer, a processknown as ‘pearl growing’. As a result, articles were identi-fied which were referred to as golden bullets because they

Kochen et al. BMC Palliative Care (2020) 19:28 of 22

https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=119241

met all inclusion criteria and thus should be included inthe review. These processes resulted in additional searches.The process of pearl growing, identifying such new articlesand adjusting the search string conducted in collaborationwith an information specialist, was repeated until thesearch was validated [31]. That is, when all golden bulletswere identified in the results of the search. Subsequentlythe information specialist involved conducted the finalstructured literature search in the following databases:MEDLINE, Embase, and CINAHL. See Additional file 1for the full search strings.

Study selectionThe studies that were published in peer reviewed Englishlanguage journals between January 1, 1998 and November15, 2018, were included when they contained a well-definedbereavement intervention, offered by regular HCPs, to par-ents of deceased children or children with a life limitingcondition at the end-of-life phase. This period of time waschosen because palliative care was formalised in a definitionby the World Health Organization (WHO) in 1998, provid-ing a consensus around the term ‘palliative care’. Interven-tions were defined as an intentional act performed for,with, or on behalf of, a parent or parents. An interventionmust consist of well-defined, concrete proceedings. Thismeans it can be replicated by other HCPs and is supportedby instructions, a manual, training, a program or other sup-porting documents. We defined regular HCPs as profes-sionals working in neonatal, or paediatric, care, where intheir daily tasks, they are confronted with palliative careand care for loss and bereavement, without having neces-sarily received specialist training in these domains. Further-more, interventions aimed at complex grief were excluded,since most parents do not require specialised services andsuch interventions are mostly performed by specialists onbereavement care. Full inclusion, and exclusion, criteria arelisted in Table 1. When the full text was not available on-line, or when it was unclear whether the practices describedwere supported by a protocol or supporting documents, thefirst author of the article was contacted by email and re-quested to send additional information or a copy of the art-icle. Both the title and abstract, and full text screenings,were performed by two researchers independently (EK, FJ),supported by the web-based screening program Rayyan(https://rayyan.qcri.org/welcome). Disagreements were re-solved in dialogue with the research team. All the articlesincluded were reference checked for additional relevantstudies.

Data extraction and quality assessmentData on baseline characteristics, participants, interven-tions, and outcomes were extracted by three researchers(EK, KG, FJ) using a predesigned form based on Schulz’sintervention taxonomy [34].

The quality assessment was performed by two re-searchers independently. The trials were assessed usingthe Cochrane risk of bias tool (KG, AvdH) [35], observa-tional studies with an adapted risk of bias tool based onthe Cochrane risk of bias assessment tool (KG, AvdH)[36], and qualitative studies were assessed with the COn-solidated criteria for REporting Qualitative research(COREQ) (FJ, EK) [37], recommended by CochraneNetherlands. The total scores ranged from 0 to 7 in thetrials and observational studies, and from 0 to 32 in thequalitative studies. The quality appraisals did not affectinclusion in the review due to the explorative nature ofthis systematic review, and also due to the fact that arti-cles containing low appraisal scores could still containvaluable interventions and thus be relevant for the studyaim [38].

Synthesis of grief theoriesThe interventions were compared with a theoretical syn-thesis, in order to compensate for the expected lack of evi-dence for most interventions, and to evaluate the possibleeffectiveness. Since there is not a singular dominant theoryon grief [16], leading theoretical models have been identi-fied using a pragmatic approach. At first, experts in the

Table 1 Inclusion and exclusion criteria

Inclusion criteria:

• Articles containing well-defined bereavement interventions offeredby regular HCPs to parents of children who have died or those chil-dren in the phase of receiving palliative care.

• Interventions aimed at consoling intense feelings of grief during theend-of-life phase or after the loss of a child. Bereavement care mayalso occur before the death of the child, for example from the mo-ment the condition of the child is deteriorating and death isimminent.

• Studies must address interventions defined as: Intentional actsperformed for, with, or on behalf of, a parent or parents. Anintervention must consist of well-defined, concrete proceedings. Thismeans it can be replicated by other HCPs and is supported by in-structions, a manual, training, a program or other supporting docu-ments. Our definition is based upon the definition of interventionsused by the World Health Organization [33].

• Studies must address regular HCPs defined as: All types of health careprofessionals who primarily provide care and/or treatment and,therefore, do not specialise in bereavement care.

• Research in the field of paediatrics and neonatology.

• Articles published in a peer reviewed journal.

• Studies published in English.

Exclusion criteria:

• Review articles.

• Articles published before 1998.

• Articles containing interventions that focus on complex grief andcomplex bereavement care.

• Articles which solely include prenatal death and stillbirth, defined as:No signs of life at or after 28 weeks’ gestation. No occurrence ofcirculation outside of the uterus.


https://rayyan.qcri.org/welcome

field of bereavement (PB, MK, EK) and palliative care(MK) were consulted, preliminary searches were conductedin Google scholar and Medline, and; a compendium on be-reavement was consulted [39]. Secondly, a pragmaticsearch was conducted in Medline using keywords such asgrief, loss, bereavement, theory and equivalents (EK).Thirdly, the theories identified were validated by experts(PB, MK). They aimed for articles that showed the vari-ation in bereavement theories and were a reflection of themost accepted theories from several different domains[18–30]. By doing so an overview of the leading theoreticalconcepts available was developed, which were extractedfrom the theoretical articles, clustered into communal the-oretical concepts, and labelled accordingly. Most theorieson grief emphasise that bereaved families need to adjustfrom the ‘old world’ to the ‘new reality’ [18–21, 23, 26–30],where the deceased is no longer physically present. This re-adjustment can be seen as a continuous process that takesmonths to years to complete, while the grief, itself, maynever be resolved. The theories propose different ap-proaches to how this adjustment is achieved. However,when comparing the leading theories we found that mosttheories have several key concepts at their core. This of-fered the opportunity to synthesize the theories on a con-ceptual level and, as such, capture the core mechanisms ofmost theories. These core mechanisms create the ‘how’ inwhich the theories explain the process of readjustment tothe new reality. The synthesis of theories resulted in fiveconcepts: anticipatory grief; an attachment to workingmodels and plans; appraisal processes; coping behaviours,and; continuing bonds. These five concepts will be dis-cussed in the following section. Importantly, these con-cepts do not represent elements of a sequential process,but rather elements of adjustment that may be re-addressed over time. The Additional file 2 displays how thetheoretical concepts are formed, based on different theoret-ical articles.Anticipatory grief refers to feelings of loss and grief

before an imminent loss [30]. It involves forms of cop-ing and reorganisation prior to loss and death, man-aging conflicting demands, facilitating a ‘good’ death,and preparedness. Preparedness comprises several dif-ferent dimensions such as medical, psychosocial, spirit-ual, and practical dimensions [25]. Preparedness mayhelp informal caregivers in coping with grief at a laterstage.Concepts concerning attachment working models and

plans enhance multiple types of plans, namely: internalplans such as personal plans which may help a personunderstand their environment [27, 28]; relational planssuch as how the self relates to others [26, 28, 30], and;attachment plans such as those created in early child-hood and which guide a person in forming attachmentbonds with others [19, 23]. Such plans make the world

understandable, recognisable, and predictable. However,sometimes they do not match reality, for example whena child dies. This causes a severe stress reaction. Thisnew reality must be incorporated into the existing plansto establish a new stable situation [18, 20].Appraisal systems are set up when a new situation

needs to be evaluated. In the situation of the loss ofa child, the appraisal systems conclude the fact thatthe reality does not match the existing plans [19, 20,23, 24, 26]. Appraisal systems will then be active untilnew plans are developed [26], or the old plans are re-vised [26, 30]. The loss is then incorporated into theautobiographical memory and a revision of self-identity can take place [18, 27].Stressful situations are managed by employing helpful

coping behaviours [18, 20]. Different coping styles exist,such as those focusing on the problem or the emotion[24]. Some coping styles may be orientated towards lossor restoration [21, 30], while some strategies may seek tomake meaning out of the experience [28]. The reactionand coping behaviours differ between individuals and de-pend upon several factors including context and personal-ity [26]. Effective coping includes the ability to shift,flexibly, between different coping strategies [20, 21, 27].Finally, the concept of continuing bonds refers to an

ongoing relationship between the individual and the de-ceased [21, 22, 26].

ResultsThe search yielded 5144 unique articles, of whichnineteen met the inclusion criteria [40–58] and twowere added following an additional reference check(Fig. 1) [59, 60]. Twelve articles represented empiricaldata drawn from the interventions of bereavementcare programmes. Of these, four represented quantita-tive studies [40–43], six represented qualitative studies[44–49], and two represented studies which includedboth quantitative and qualitative outcomes [50, 51].Nine articles were descriptive in nature [52–60].These articles contained well-defined bereavement in-terventions, yet the interventions were not tested em-pirically and, therefore, the outcomes could not beprovided. An overview of all the articles included isprovided in Table 2. Quality appraisals ranged be-tween 2 and 5 for trials and observational studies,and between 8 and 21 for qualitative studies. Qualityscores on all studies can be found in Table 2. Quali-tative studies received higher appraisal scores.The twenty-one articles included fifteen unique be-

reavement interventions, identified with the letters ofthe alphabet A through to O. Two interventions weredescribed in multiple articles (A and G). The interven-tion characteristics are summarised in Table 3.


The characteristics of bereavement care interventionsThe bereavement care programmes were predominantlyinitiated by hospital staff (A-N). They took place in thefield of neonatology (n = 5) (F,H,I,M,O), paediatrics (n =9) (B,C,D,E,G,J,K,L,N), or both neonatology and paediat-rics (n = 1) (A). Some interventions were aimed at chil-dren with a certain diagnosis: Sudden Infant DeathSyndrome (SIDS) (n = 1) (O), and cancer (n = 4) (B,E,G,N). Three studies presented a bereavement careprogramme, while focussing on the impact on HCPs oflosing a patient (A,G,J).With regard to the timing, we found that eleven inter-

ventions started after the child’s death (A,B,C,D,E,G,I,K,L,M,O), one intervention started during the end-of-lifephase (J), and three interventions covered both before,and after, death (F,H,N).In most interventions, the person intervening was ei-

ther a nurse, appointed as the primary carer and operat-ing individually or as part of a team (A,C,E,H,I,K,M), ora physician (A,C,D,G,I). Other people intervening in-cluded clinical social workers (B,H,K), chaplains (A,L) orpeer supporters - parents who have previously lost achild too - (A), photographers (J), trained counsellors(D), public health nurses (O), team members who hadthe most contact with parents or experienced the light-est workload (F) or, bereavement care team membersnot otherwise specified (N).We identified five overarching components of in-

terventions which encompass the variety of practicesdescribed in the interventions. These are: (i) the

acknowledgement of parenthood and the child’s life;(ii) establishing keepsakes; (iii) follow-up contact; (iv)education and information, and; (v) remembranceactivities.

(i) The acknowledgement of parenthood and thechild’s life consisted of washing, holding, ordressing the child (H,I), giving parents privacy inthe moments surrounding the death of the child,for instance in a family room (H), providing thechild with a certificate of life (I), or a blessingceremony (F,H).

(ii) Establishing keepsakes consisted of safeguarding alock of hair (H,I), hand, foot, or face print (H,I),pictures (F,H,I,J), or items that belonged to thechild, such as toys, a blanket (H), ornaments (H), amemory stone (I), clothes (I), a baby ring orbracelet (H,I), memory books (F), poems (A,H), orother belongings (F,H). The created items wereoften provided to the parents in the form of acomfort basket or memory box (B,H). Keepsakes,especially for siblings, could also be provided (I).

(iii)Follow-up contact consisted of follow-up calls(A,B,E,F,G,H,I,K,O), cards (B,E,G,H,I,N), visits(A,F,L,O), flowers (F), condolence letters (K), andappointments (A,C,D,G,M). Follow-up contact alsoincluded facilitating contact with peers (A,K,N).

(iv) Education and information on coping, grief, andpractical information concerning the death of thechild, consists of folders and booklets with

Fig. 1 Study flow


Table

2Baselinecharacteristics

Qua

ntitativestud

ies

Autho

r/ye

ar/

coun

try

Stud

ytype

Aim

ofthestud

ySe

tting

Sample

Metho

dof

data

colle

ction

Outco

mes

mea

sures

Qua

lity

Aho

etal.

(2011)

[40],

Finland

RCTFollow-

upprog

ram

vs.usualcare

Toevaluate

abe

reavem

entfollow-up

interven

tionforfathers,by

comparin

ggriefreactio

nsandto

exploretheir

expe

riences

with

theprog

ram

Intensivecare

unit,

maternity

ward,

and

emerge

ncyroo

min

fiveun

iversity

med

ical

centres

Fathersof

childrenwho

died

atage≤3years

1.Hog

anGrief

Reactio

nsChe

cklist

2.Questionn

aire

measurin

gsocial

supp

ortprovided

byHCPs

and

peer

supp

orters

3.Questionn

aire

measuringfathers

experiencewith

thefollow-up

prog

ram

1.Despair,panic

behaviou

r,pe

rson

algrow

th,b

lameand

ange

r,de

tachmen

t,disorganisation.

2.Affect,affirm

ation,

aidfro

mHCPs

and

peer

supp

orters

3.Theim

plem

entatio

nof

theprog

ram

2ou

tof

7

Meertet

al.

(2014)

[41],

USA

Observatio

nal

stud

yTo

evaluate

thefeasibility

andpe

rceived

bene

fitsof

cond

uctin

gph

ysician-parent

follow-upmeetin

gs

Sevenchildren’s

hospitals,oncolog

yun

its

Criticalcare

physicians,b

ereaved

parentsof

childrenwho

have

died

inthePICU,relevantothe

rs

Survey

(item

son

Likertscaleand

open

-end

edqu

estio

ns)

1.Ph

ysicianadhe

rence

totheframew

ork

2.Expe

riences

with

follow-upmeetin

g

4ou

tof

7

Nikkolaet

al.(2013)

[42],

Finland

Observatio

nal

stud

yTo

describ

emothe

rs’experiences

with

thebe

reavem

entfollow-upprog

ram

Intensivecare

unit,

maternity

ward,

and

emerge

ncyroo

min

fiveun

iversity

med

ical

centres

Mothe

rsof

childrenwho

died

atage≤3years

1.Questionn

aire

measurin

gsocial

supp

ortprovided

byHCPs

and

peer

supp

orters

2.Questionn

aire

measurin

gmothe

rsexpe

riencewith

thefollow-up

prog

ram

1.Affect,affirm

ation,

aid.

2.Theim

plem

entatio

nof

theprog

ram

5ou

tof

7

Raitioet

al.

(2015)

[43],

Finland

RCTFollow-

upprog

ram

vs.usualcare

Toexploretheeffectsof

abe

reavem

ent

follow-upinterven

tionon

mothe

rs’g

rief

Five

university

med

icalcentres

Mothe

rsof

childrenwho

died

atage≤3years

1.Hog

anGrief

Reactio

nsChe

cklist

1.Despair,panic

behaviou

r,pe

rson

algrow

th,b

lameand

ange

r,de

tachmen

t,disorganisation.

2ou

tof

7

Qua

litativestud

ies

Autho

r/ye

ar/

coun

try

Stud

ytype

Aim

ofthestud

ySe

tting

Sample

Metho

dof

data

colle

ction

Outco

mes

Qua

lity

Aho

etal.

(2011)

[44],

Finland

Gen

eric

qualitative

stud

y

Toevaluate

theexpe

riences

and

sugg

estio

nsforfurthe

rim

provem

entof

abe

reavem

entfollow-upprog

ram

interven

tion

Perin

atalandne

onatal

units

HCPs

who

wereappo

intedto

care

forachild

who

died

atage≤3years

Ope

n-en

ded

questio

nnaire

and

individu

alteleph

one

interviews

1.Expe

riences

with

thebe

reavem

ent

follow-upprog

ram

2.Ideasto

improve

thebe

reavem

ent

follow-upprog

ram

14,5ou

tof

32


Table

2Baselinecharacteristics(Con

tinued)

Berrett-

Abe

beet

al.(2017)

[45],U

SA

Gen

eric

qualitative

stud

y

Toun

derstand

parents’expe

riences

with

participationin

aho

spital-b

ased

bereavem

entsupp

ortprog

ram

following

theloss

ofachild

tocancer

Tertiary

care

centre,

Dep

artm

entof

paed

iatric

haem

atolog

y/on

cology

Parentsof

childrenwho

have

died

ofcancer

Focusgrou

p1.Expe

riences

with

med

icalteam

durin

gchild’sillne

ss2.Expe

riences

with

bereavem

entfollow-

upprog

ram

after

child’sde

ath

3.Expe

riences

ofothe

rbe

reavem

ent

supp

ort

19,5ou

tof

32

Brinket

al.

(2016)

[46],

Den

mark

Gen

eric

qualitative

stud

y

Toexploreparents’expe

rienceof

afollow-upmeetin

gUniversity

hospital,

Paed

iatricIntensive

CareUnit

Parentsof

children(age

d0–16)who

have

died

inthePICU

Individu

alface-to-

face

interview

1.Expe

riences

arou

ndafollow-upmeetin

g19

outof

32

Darbyshire

etal.

(2012)

[47],

Australia

Gen

eric

qualitative

stud

y

Toexploretheexpe

riences

ofparents

who

participated

inanu

rse-led

teleph

onefollow-upsupp

ortprog

ram

inpaed

iatricon

cology.

Region

alwom

en’s&

children’sho

spital,

paed

iatricon

cology

unit

Parentsof

childrenwho

have

died

from

anon

cology-related

cond

ition

Individu

alface-to-

face

interview

1.Expe

riences

with

afollow-upsupp

ort

prog

ram

21ou

tof

32

Egglyet

al.

(2011)

[48],

USA

Gen

eric

qualitative

stud

y

Tode

scrib

eaframew

orkto

assistPICU

physicians

incond

uctin

gfollow-up

meetin

gs

Sevenchildren’s

hospitals,oncolog

yun

its

Criticalcare

physicians

andbe

reaved

parentswho

sechildrendied

inthe

PICU

Individu

alinterviewsby

teleph

one

1.Expe

riences

with

follow-upmeetin

gs8ou

tof

32

Meertet

al.

(2011)

[49],

USA

Gen

eric

qualitative

stud

y

Toinvestigateph

ysicians’experiences

andpe

rspe

ctives

regardingfollow-up

meetin

gs

Sevenchildren’s

hospitals,oncolog

yun

its.

Criticalcare

physicians

Individu

alinterviewsby

teleph

one

1.Expe

riences

with

follow-upmeetin

gs2.Ideasforfuture

follow-upmeetin

gs

17ou

tof

32

Mixed

metho

dstud

y

Autho

r/ye

ar/

coun

try

Stud

ytype

Aim

ofthestud

ySe

tting

Sample

Metho

dof

data

colle

ction

Outco

mes

Qua

lity

Miche

lson

etal.

(2013)

[50],

USA

Mixed

metho

dstud

yTo

describ

eim

plem

entatio

nof,

reflections

on,and

addressbarriersfora

PICU

bereavem

entph

otog

raph

yprog

ram,according

toHCPs

Children’sho

spital,

PICU

HCPs

who

caredforchildrenat

PICU

who

met

oneof

followingcriteria:

impe

ndingde

ath,planne

dwith

draw

alof

life-sustaining

therapieswith

anexpe

ctationof

asudd

ende

ath,

exam

inationconsistent

with

brain

death

Questionn

aires

(closedandop

en-

ende

dqu

estio

ns)

1.Expe

riences

with

abe

reavem

ent

photog

raph

yprog

ram

2.Ideasto

improve

theprog

ram

4ou

tof

715,5ou

tof

32

Oliver

etal.

(2001)

[51],

USA

Mixed

metho

dstud

yTo

exploreexpe

riences

with

abe

reavem

entsupp

ortprog

ram

Region

alchildren’s

hospital,paed

iatric

traumacentre

Families

ofchildrenwho

have

died

inthepaed

iatrictraumacentre

and

parentalsupp

orters

Survey

and

individu

alinterview

1.Expe

riences

with

abe

reavem

ent

supp

ortprog

ram

4ou

tof

710

outof

32

Descriptive

articles

Autho

r/ye

ar/

coun

try

Stud

ytype

Aim

ofthestud

ySe

tting

Target

pop

ulation

Metho

dof

data

colle

ction

Outco

mes

Qua

lity

Aho

etal.

(2010)

[52],

Finland

Descriptive

article

Tode

scrib

ethede

velopm

entand

implem

entatio

nof

abe

reavem

ent

follow-upinterven

tionforgrieving

fathers

Five

university

med

icalcentres,

perin

ataland

neon

atalun

it

Fathersof

childrenwho

died

atage3

oryoun

ger

N.A.

N.A.

N.A.


Table

2Baselinecharacteristics(Con

tinued)

Coo

ket

al.

(2002)

[53],

UK

Descriptive

article

Toreview

localb

ereavemen

tssupp

ort

practices

over

thelast5years

Region

alho

spital,

PICU

Parentsof

childrenwho

have

died

unexpe

cted

lyin

thePICU

N.A.

N.A.

N.A.

Edi-O

sagie

etal.

(2005)

[59],

UK

Descriptive

article

Tode

scrib

eatemplatefora

bereavem

entservice

Tertiary

care

centre,

NICU

Parentsof

childrenwho

have

died

intheNICU

N.A.

N.A.

N.A.

Gibsonet

al.(2011)

[60],U

SA

Descriptive

article

Tode

scrib

ethede

velopm

entof

aNICU

bereavem

entprog

ram

University

hospital,

NICU

Parentsof

childrenwho

have

died

intheNICU

N.A.

N.A.

N.A.

Levick

etal.(2017)

[54],U

SA

Descriptive

article

Tosummarizeandevaluate

acompreh

ensive

approach

ofbe

reavem

entservices

toNICUfamilies

anded

ucation/supp

ortto

NICUstaff

Region

alchildren’s

hospital,NICU

Parentsof

childrenwho

have

died

intheNICU

N.A.

N.A.

N.A.

Morris

etal.(2016)

[55],U

SA

Descriptive

article

Todiscussthego

alsof

bereavem

entcare

andthene

edto

standardize

bereavem

entcare

inthepaed

iatric

setting,

andde

scrib

etheirho

spitalw

ide

bereavem

entmod

el

Hospital,paed

iatric

setting

Families

ofchildrenwho

have

died

ina

paed

iatricsetting

N.A.

N.A.

N.A.

Reilly-

Smoraw

ski

etal.

(2010)

[56],

USA

Descriptive

article

Toevaluate

expe

riences

ofbo

thindividu

alsandcoup

leswith

abe

reavem

entsupp

ortgrou

p

Tertiary

Cen

tre,NICU

Parentsof

new-borns

orinfantswho

have

died

intheNICU.

N.A.

N.A.

N.A.

Snam

anet

al.(2017)

[57],U

SA

Descriptive

article

Toreview

thethreeprim

arypillarsof

aparent-in

spiredandparent-derived

bereavem

entprog

ram

University

children’s

hospital,on

cology

andpalliativecare

unit

Parentsof

childrenwho

have

died

ofcancer

N.A.

N.A.

N.A.

Stastnyet

al.(2016)

[58],U

SA

Descriptive

article

Toprovideapracticalgu

idelineforpu

blic

health

nurses

(PHN)in

perfo

rmingho

me

visitsto

bereaved

parents

Hom

evisits

Parentsof

childrenwho

have

died

ofsudd

eninfant

deathsynd

rome

N.A.

N.A.

N.A.


Table

3Interven

tioncharacteristics

Autho

r/ye

ar/

coun

try

Interven

tion

ist

Interven

tion

Outco

mes

Dev

elop

men

tIm

plemen

tation

Theo

retical

support

Outlin

eCom

pon

ents

A.A

hoet

al.

(2010)

[52],

Aho

etal.

(2011a)[40],

Aho

etal.

(2011b

)[44],

Nikkolaet

al.

(2013)

[42],

Raitioet

al.

(2015)

[43],

Finland

Peer

supp

orters

andHCPs

-Supp

ortpackageat

dischargeafterthechild’s

death

-Peer

supp

orton

eweek

afterthechild’sde

ath

-Follow-upcontactby

HCPafter2–6weeks

-Supp

ortpackage

-Peer

contact

-HCPcontact

Outcomes

fathers(Aho

etal.2011a):

-Expe

rienced

mostaffect

andem

otionalsup

port,

morefro

mpe

ersupp

ortersthan

from

HCPs.

-Mostfathersrespon

ded

that

thefollow

upcontacthe

lped

them

incoping

,tim

ingof

contact

was

appreciated

-Lower

values

inall

dimen

sion

sof

grief

except

forpe

rson

algrow

thin

the

interven

tiongrou

pOutcomes

mothe

rs:

-Nosign

ificant

differences

ingriefreactio

nsbe

tweeninterven

tion-

andcontrolg

roup

(Raitio

etal.2015)

-Mothe

rsreceived

most

affect,m

oderate

affirmation,andlittle

aid

from

HCPs

andpe

ersupp

orters(Nikkolaet

al.

2013)

-Follow-upcontacthe

lped

mothe

rsin

coping

(Nikkolaet

al.2013).

Outcomes

HCPs

(Aho

etal.

2011b)

-Follow-upcontact

impo

rtantelem

entof

care,b

utalso

stressful

anddifficult

-Im

plem

entatio

npo

ssible

dueto

positiveattitud

eHCPs,resou

rces

inadeq

uate

-Interven

tionincreased

coop

erationbe

tween

HCPs

andpe

ersupp

orters

-Baselinestud

yon

curren

tbe

reavem

entsupp

ort

system

s-System

aticreview

-Expe

rtpane

l-Clinicalexpe

rienceand

patient

perspe

ctive

-Training

for

implem

enters

-Training

tousethe

interven

tionwas

provided

forpe

ersupp

ortersandHCP

Not

men

tione

d


Table

3Interven

tioncharacteristics(Con

tinued)

Autho

r/ye

ar/

coun

try

Interven

tion

ist

Interven

tion

Outco

mes

Dev

elop

men

tIm

plemen

tation

Theo

retical

support

Outlin

eCom

pon

ents

B.Berrett-Abe

beet

al.(2017)

[45],U

SA

Socialworker

(program

coordinator)and

clinician

Twoyearsbe

reavem

ent

prog

ram:

-Com

fortbasket

3–4

weeks

afterde

ath

-Ph

onecall/no

te:2

weeks,

1mon

thand2mon

ths

afterchild’sde

ath,

annu

allyon

birthd

ayand

anniversary

-Letters:at

3,6,10,12,18,24

mon

thsafterde

ath

-Com

fortbasket

-Ph

onecalls

-Letters

-Info

sheets

-(Ann

iversary-)cards

Iden

tifiedthem

es:

(1)Livedexpe

rienceof

grief;griefisintense,

long

-lasting,

variesday

byday,different

for

everyone

.Relationships

couldbe

comestrained

oracomfortingsource

ofsupp

ort.

(2)Relatio

nships

HCPs:

Beingtreatedlike

family,hum

anconn

ectedn

essand

compassion

(3)Hospital-b

ased

bereavem

entsupp

ort:

Feelingof

notbe

ing

forgottenby

HCPs,

parentsappreciated

talkingto

HCPs

who

wereno

tafraid

oftalkingabou

ttheir

traumaticexpe

riences.

Parentsvalued

the

conten

tof

theletter,

comfortbasket

and

materials.

(4)Preferen

cesextend

edbe

reavem

entcare:

ongo

ing,

flexible,

annu

alinform

algathering,

form

alizes

peerssupp

ortcontact

-Develop

men

tby

multid

isciplinaryworking

grou

pin

oncology

-Basedon

socialsupp

ort

theo

ry,inp

utfro

mparents,andclinical

know

ledg

e

Not

men

tione

dStress

andcoping

socialsupp

ort

theo

ry:social

supp

orthe

lps

individu

als

managestressful

situations

byim

provingcoping

respon

ses

C.Brin

ket

al.

(2016)

[46],

Den

mark

PICUph

ysicianand

nurses

90-m

infollow-upmeetin

gat

thePICU

,4–8

weeks

aftertheloss

ofthechild:

45min

todiscussmed

ical

topics

(physician

and

nurse)

and45

min

todiscusscare

andde

aling

with

everyday

life(nurse)

-Follow-upmeetin

gIden

tifiedthem

es:

(1)Turningback:stressful

andun

pleasant

toreturn

toPICU,noprior

expe

ctations,valuable

toseeHCPs

affected

bythechild’sadmission

.(2)Fram

eworkmeetin

g:am

bience

calm

and

oppressiveor

good

and

emotional(with

focus

onparents).Participation

ofnu

rses

was

valued,

parentsexperienced

Not

men

tione

dNot

men

tione

dNot

men

tione

d


Table

3Interven


tinued)

Autho

r/ye

ar/

coun

try

Interven

tion

ist

Interven

tion

Outco

mes

Dev

elop

men

tIm

plemen

tation

Theo

retical

support

Outlin

eCom

pon

ents

moretend

ernesswhen

theph

ysicianleft.

(3)Relatio

nsHCP:

relatio

nshipwith

staff

makes

return

toPICU

good

expe

rience,eg

.be

ingrecogn

ized

and

men

tione

dby

name.

(4)Closure:m

eetin

gwas

expe

rienced

asclosure

ofthecourse

inthe

PICU

D.C

ooket

al.

(2002)

[53],U

KTraine

dcoun

sellor

anddo

ctor

-Inform

ationlettersfor

parents

-Encouragem

entof

families

toseek

supp

ort

-Follow-upmeetin

gs8–12

weeks

afterchild’sde

ath

-Follow-upmeetin

g-Person

alized

inform

ation

-Encouragem

ent

Not

applicable

Traine

dcoun

selloris

available

Not

men

tione

dNot

men

tione

d

E.Darbyshire

etal.(2012)[47],

Australia

Designatednu

rse

-Inform

ationfolders,

containing

contacts,

readings

andpractical

advice

-Atten

ding

thechild’s

fune

ral

-Ph

onecalls

until

13mon

thsafterde

ath

-Cards

atspecialtim

essuch

asbirthd

ay.

-Inform

ationfolders

-Atten

ding

the

fune

ral

-Follow-upph

ones

calls

-Send

ingcards

-Allparentsreceived

the

follow-upcalls

andwere

satisfiedwith

theleng

thof

thefollow-upprog

ram.

-Allparentswerepo

sitive

abou

ttheteleph

one

follow-upprog

ram

and

valued

theop

portun

ityto

sharemem

orieswith

someo

newho

knew

their

child

-Person

alized

cardsand

lettersfeltas

anacknow

ledg

edof

the

impo

rtantrelatio

nship

with

theho

spital.

Theinterven

tionwas

basedon

aliterature

search

andafocusgrou

p.

-Bereavem

ented

ucation

andtraining

twiceayear.

-Bereavem

entcase

fileis

created,

includ

inga

photo,callplan,and

copies

ofcorrespo

nden

ce.

Not

men

tione

d

F.Edi-O

sagie

etal.(2005)

[59],U

K

Bereavem

entCare

Team

(BCT):team

mem

berthat

had

mostcontactwith

theparentsbe

fore

death,or

theon

ewith

thelightest

case

load.

Priorto

death:Introd

ucing

mem

berof

BCT,coun

sellor,

andchaplain.O

ffer

blessing

orreligious

ceremon

yandaccess

tobe

reavem

entsuite.

Immediate

periodfollowing

death:Literature/

inform

ationisprovided

,clothing

from

bereavem

ent

room

nursingthebaby,

providecold

cot.Help

-Blessing

/religious

ceremon

y-Bereavem

entsuite

-Mem

orybo

ok-Pictures

-Keep

sakes

-Inform

ationletters

-Providecold

cot

-Helpin

arrang

ing

thefune

ral

-Mem

orybo

xand

keep

sake

bag

Not

applicable

Mem

bersof

bereavem

ent

care

team

have

unde

rtaken

coun

selling

courses,

educationalw

orksho

ps,

andworksho

pon

how

totrainothe

rs.

Regu

lared

ucationsessions

forHCPs,w

ritten

guidance.

Not

men

tione

d


Table

3Interven


tinued)

Autho

r/ye

ar/

coun

try

Interven

tion

ist

Interven

tion

Outco

mes

Dev

elop

men

tIm

plemen

tation

Theo

retical

support

Outlin

eCom

pon

ents

planning

thefune

raland

attend

,cardissent.

Provisionof

mem

orybo

xandkeep

sake

bag.

Helps

explaining

thede

athto

the

siblings.24hteleph

one

supp

ortavailable.Advice

onfinancialmattersand

socialbe

nefits.

Followup:H

omevisitto

all

bereaved

parents,flowers

aresent

after6weeks.

Ann

ualrem

embrance

service.

-Accessto

teleph

one

supp

ort24/7

-Financialadviceand

bene

fits

-Follow-upvisit

-Flow

erssent

-Ann

ual

remem

brance

service

G.Egg

lyet

al.

(2011)

[48],

Meertet

al.

(2011)

[49],

Meertet

al.

(2014)

[41]

Physicians

ofthe

PICUwho

are

traine

din

cond

uctin

gfollow-

upmeetin

gs.

Fram

eworkfollow-up

meetin

g:-Invitatio

nat

discharge

andafteron

emon

th-Card/callafteron

emon

th,evaluating

preferen

cesformeetin

gandplanning

-Follow-upmeetin

g(1

h)-After

meetin

g:thankyou

note,sup

portive

inform

ation

-Deb

riefingforHCPs

-Follow-upmeetin

g-Supp

ortivematerials

andinform

ation

-Ph

onecallandcard

-Ph

ysicians’p

articipation

infollow-upmeetin

gs:

never(33%

),1–5

meetin

gs(31%

),>5

meetin

gs(36%

).Atten

dantsparticipated

moreoftenthan

fellows.

-Parentspe

rceivedthe

meetin

gas

helpfulfor

them

selves

(92%

),for

othe

rs(89%

)and

incoping

with

thefuture

(78%

)-Ph

ysicians

stated

that

they

adhe

reto

the

framew

ork(75%

),consider

theframew

ork

easy

touse(92%

),be

neficialfor

parents

(92%

)and

forthem

selves

(89%

)

EgglyS(2011):Framew

ork

isbasedon

theexpe

rience

andpe

rspe

ctives

ofbe

reaved

parentsand

paed

iatricintensivecare

unitph

ysicians.

Physicianparticipants

weretraine

dto

usethe

follow-upmeetin

gframew

orkviaface-to-face

orweb

-based

smallg

roup

sessions.Training

includ

ed:edu

catio

non

bereavem

entprocesses

andtheframew

ork,

simulated

follow-up

meetin

gsandinteractive

discussion

s

Not

men

tione

d

H.G

ibsonet

al.

(2011)

[60],

USA

Staffof

theNICU

(mostly

nurses

and

socialworkers),all

bereavem

ent

coun

cilm

embe

rs.

Priorto

death:profession

alph

otog

raph

y,offer

baptism,d

iscuss

endof

life

preferen

ces

Afterd

eath

ofthechild:G

ive

tedd

ybear;inform

abou

tmem

orybo

xandfollow-up

contact;providefoldersand

readingmaterial.

Follow-upcontact:6fixed

times,from

1daythroug

h1year.C

ardsche

dule:6

-Washing

/holding

thechild

-Baptism/religious

ceremon

yavailability

offamily

room

-Hand−

/foo

tprin

tsandlock

ofhair

-Mem

orybo

x(includ

esCDwith

photos,b

racelets,

rings,she

llfro

mbaptism,any

Not

applicable

Practice-basedandon

the

person

alexpe

riences

ofon

enu

rse.Severaln

urses

and2socialworkers

attend

edtheResolve

Throug

hSharing(RTS)

training

byBereavem

ent

Services

-Che

cklistin

med

icalfile

-Educationne

wem

ployeesandon

e-a-

year

educationfair

-Mon

thlycoun

cilm

eetin

g

Not

men

tione

d


Table

3Interven


tinued)

Autho

r/ye

ar/

coun

try

Interven

tion

ist

Interven

tion

Outco

mes

Dev

elop

men

tIm

plemen

tation

Theo

retical

support

Outlin

eCom

pon

ents

cardson

speciald

ays.

Twiceayear

amem

orial

service.Parentsareinvited

thefirsttw

oyearsafter

death.

bedsidebe

long

ings)

-Follow-upcards

(includ

ingbu

tterfly

ornamen

t)andcalls

-Family

supp

ort

folder

-Casket

-Remem

brance

ceremon

y

I.Levick

etal.(2017)

[54],

USA

Neo

natologistand

design

ated

staff

mem

ber(prim

arily

nurse)

with

supp

ortfro

mBC

T

Whenneon

atejustdied:

invitin

glovedon

es,hold

andbathechild,p

reserving

infant’sbe

dsidetillp

aren

tsarereadyto

removeit.

Keep

sakeseven

ifparents

areun

certain.In

that

case,

hospitalstoresthe

keep

sakes.Theability

tolet

parent

help

with

making

keep

sakes.Che

cklistof

services

that

canbe

provided

.Follow-upprogram:call

sche

dule;w

ithin

days,at2-

3weeks,after

threeweeks

adjusted

towishe

sparents

until

12mon

thsafter

death.Cardsche

dule:

standard

with

in2weeks

andat

11mon

ths.Other

mom

entsadjusted

towishe

sof

parents.

-Hold/bath

child

-Sympathycards

-Follow-upph

one

calls

-Ph

otos

ofthechild

-Hand−

/foo

t−/head

printsof

thechild,

couldbe

combine

dwith

hand

ofthe

parent/sibling

-Siblingsupp

ort

prog

ram

-Bereavem

ent

inform

ationfolder

-Certificateof

life

-Beaded

name

bracelet

-Mem

oryston

e-Locket

ofhair

-Seashe

llused

for

baptism

-Bereavem

entgo

wn

and/or

gowncrafted

from

donated

wed

ding

dresses

-Escortparents/

siblings

tothecar

-Keep

sake

boxfor

siblings

(storybo

oks,

stuffedanim

als,

mem

oryston

e,hand

−/foo

tprin

ts

Not

applicable

Literature

review

-Theinterven

tionis

coordinatedby

theNICU

Bereavem

entCareTeam

(BCT).

-Bereavem

ent/keep

sake

checklistisused

byall

person

nel.

-BC

TNurse

repo

rts

person

alinform

ationand

dates,andde

sign

ated

nurseappo

intedin

spreadsheet.

Not

men

tione

d

J.Miche

lson

etal.(2013)[50],

USA

Photog

raph

erwho

hasspecific

expe

rtisein

bereavem

ent

photog

raph

yand

training

in

Photog

raph

erisup

dated

onmed

ical/family

situationof

family

byHCP.

Taking

photog

raph

sof

patient

andfamily

with

out

posing

.Preparin

galbu

min

-Ph

otog

raph

albu

mof

patient

andfamily

indo

cumen

tary

style

-HCPs

thou

ghtparents

weregrateful

forph

otos

(85%

),andph

otos

made

HCPs

feelbe

tter

abou

ttheirrole(70%

)and

did

nottake

toomuchtim

e

Prog

ram

was

basedon

abe

reavem

entph

otog

raph

yprog

ram

inNICUand

adjusted

with

inpu

tfro

mmultid

isciplinarygrou

p.

Educationof

staff

mem

bersabou

tthe

prog

ram

throug

hpresen

tatio

nsat

regu

lar

meetin

gs,information

provided

onlineand

Not

men

tione

d


Table

3Interven


tinued)

Autho

r/ye

ar/

coun

try

Interven

tion

ist

Interven

tion

Outco

mes

Dev

elop

men

tIm

plemen

tation

Theo

retical

support

Outlin

eCom

pon

ents

bereavem

ent

supp

ort.

documen

tary

styleand

deliver

albu

mto

family.

(85%

).-Po

sitive:im

pact

prog

ram

onfamilies

andHCPs

-Barriers:fun

ding

,availabilityph

otog

raph

ers,

inform

edconsen

tparents

individu

ally.

K.Morris

etal.

(2016)

[55],

USA

Prog

ram

coordinator,social

workersanda

nursepractitione

r

-New

lybe

reaved

families

aremaileda

bereavem

entpacket

(includ

esaform

alcond

olen

celetter,a

psycho

-edu

catio

nal

bereavem

entgu

ide,a

flyer

outlining

upcoming

seminarsat

theho

spital,

andalistof

online

prog

rams).

-Seminarsforparents

abou

tcoping

with

grief

and8-weeksupp

ort

grou

peach

sprin

g.-Availabilityof

supp

ort

grou

ps,ind

ividual

coun

selling

,telep

hone

supp

ort,andmem

orial

service

-Con

dolenceletter

-Mem

orialevents

-Educationalg

uide

(boo

klet

andon

web

site)

-Seminarsabou

tcoping

with

grief

-Supp

ortgrou

p-Worksho

pfor

parentsandsiblings

-Teleph

onesupp

ort

-Referraland

resource

inform

ation

Not

applicable

Theprog

ram

isde

velope

dby

parentsandstaff.The

bereavem

entprog

ram

was

mod

elledon

the

bereavem

entprog

ram

develope

dat

ane

arcancer

institu

tewhe

reed

ucation,

guidance

andsupp

ort

wereiden

tifiedas

the

prim

aryconstructs.

Quarterlyseminarsfor

staff,offeredby

the

bereavem

entTask

Force,

abou

tgrief,be

reaved

families,and

self-care

for

clinicians

.

Thepsycho

-ed

ucational

bereavem

ent

guide“W

hen

GriefisNew

”,is

basedon

cogn

itive

behaviou

rtheo

ryprinciples.

L.Oliver

etal.

(2001)

[51],

USA

Chaplain

-Firstmeetin

gat

hospital

justafterchild’sde

ath

(religious

ritualsare

offered,

parentsare

provided

with

inform

ationalb

rochures)

-Second

meetin

gat

fune

ralo

rthefamilies’

homeafteron

emon

th-Third

meetin

g:ed

ucationald

inne

rwith

thefamily

and15

supp

orters(egfrien

ds/

family),with

intw

omon

thsafterde

ath

-Inform

ation

brochu

re-Inform

ationvide

oforsurviving

children

-Atten

ding

fune

ral

-Hom

evisit

-Educationalevent

with

supp

orters

Parent

Survey:

-Timein

hospital:staff

wererepo

rted

sensitive

tothechild

andparents

(90%

&93%),prep

ared

parentsforde

ath(81%

),andthetreatm

entwas

unde

rstand

able(90%

).-Chaplain’sfirstvisit:

parentswanteda

meetin

g,themeetin

gwas

helpful,and

answ

ered

questio

ns(80,

90,78%

).-Meetin

gwith

supp

orts:

Supp

ortersremem

bered

thechild

(91%

),accepted

adjustmen

ttim

e(89%

),andcalled,

visited,

take

outandwrote

more

(73%

)

Not

men

tione

dNot

men

tione

dNot

men

tione

d


Table

3Interven


tinued)

Autho

r/ye

ar/

coun

try

Interven

tion

ist

Interven

tion

Outco

mes

Dev

elop

men

tIm

plemen

tation

Theo

retical

support

Outlin

eCom

pon

ents

-Supp

orterssurvey:The

meetin

ghe

lped

supp

ortersun

derstand

parents’journe

y(95%

),prep

ared

tocare

(82%

),madeitlikelyto

use

advise

(82%

),supp

orters

took

specificactio

nsto

remem

berthechild

(69%

),accepted

adjustmen

ttim

e(94%

),andcalled,

visited,

took

out,wrote

more(78%

).Observatio

nson

the

supp

ortne

twork:63%

took

actio

nsto

remem

ber

thechild,50%

accepted

adjustmen

ttim

e,31%

called,

visited,

took

out

andwrote

often,and77%

repo

rted

ongo

ingbe

nefit

from

dinn

ermeetin

g.

M.Reilly-

Smoraw

skiet

al.(2010)[56]

Twosenior

NICU

staffnu

rses

with

backgrou

ndsin

psycho

logy

and

socialwork

Aclosed

,hospital-b

ased

form

atforcoup

le-based

supp

ortgrou

p(12

weeks):

week1–3:introd

uctory

phase

week3–11:ope

n-form

atde

sign

week11:a

qualitativeevaluatio

ntool

was

distrib

uted

and

collected

.week12:sum

marizingthe

supp

ortgrou

pexpe

rience

andforfinalprep

aration

forlifeafterthe

bereavem

entgrou

p.Leadersplanne

dto

offerto

reconven

ethegrou

pat

intervalsof

3mon

thsfor

theyear

followingthe

baby’sde

ath

12weeks

coup

le-

basedbe

reavem

ent

grou

p;attend

ing

weeklyTop

icsfor

discussion

:Athebaby’sde

ath

andrelatedeven

tsBpe

rson

algrief

expe

riences

Ccoup

leissues

includ

ingge

nder-

relatedgrieving

and

commun

ication

Dthefuture

Not

applicable

Prog

ram

was

basedon

severalo

bservatio

nson

bereaved

coup

les.Cou

ple-

basedbe

reavem

entgrou

pwas

partof

bereavem

ent

care

prog

ram.

-After

each

12-w

eek

sessionthem

esof

the

survey

werebu

ndled,

andadjustmen

tswere

madewhe

rene

eded

toim

provethesupp

ort

grou

pfunctio

ning

.-Educationof

the

facilitators

-Atten

ding

ofbe

reavem

entcoun

selling

worksho

psandrelated

conferen

ces

Not

men

tione

d

N.Snaman

etal.

(2017)

[57],

USA

Qualityof

life

team

,be

reavem

ent

prog

ram

coordinatorand

Thebe

reavem

entprog

ram

describ

esthreeparts:

Part1:Clinicaland

Supp

ortiveInterven

tions:

-Child/fam

ilymeetthe

-Send

ingcards

-Peer

contact

-Mem

oriald

ay-Bo

okletsand

inform

ationfolders

Not

applicable

Theprog

ram

isde

velope

dby

parentsandstaff.

Bereaved

parentsand

multid

isciplinarymem

bers

oftheho

spitalcom

prise

Parent

men

torsreceive

training

onavariety

oftopics.

Not

men

tione

d


Table

3Interven


tinued)

Autho

r/ye

ar/

coun

try

Interven

tion

ist

Interven

tion

Outco

mes

Dev

elop

men

tIm

plemen

tation

Theo

retical

support

Outlin

eCom

pon

ents

bereaved

parent

men

tors

QOLteam

and

bereavem

entcoordinator

tostartsupp

ortive

relatio

nship.

Families

receiveabo

oklet,op

tion

forpe

ersupp

ort.

-Mem

orialevent;twoday

gatheringforbe

reaved

parentswho

sechild

died

6mon

thsto

threeyears

previously.

Part2:Parent-Created

Materials:

-Con

dolencecard,several

weeks

tochild’sde

ath.

-Bereavem

entresources

guideismailedwith

intw

oweeks

ofachild’s

death.

-Season

sbo

oklet&

Remem

brance

mailings

-Add

ition

alresources:

booksforsiblings,p

aren

tsvide

os.

Part3:Bereaved

parent

couldbe

involved

ined

ucationforstaffand

participatein

research.

-Vide

o’sforparents

-Con

tact

bycards/

emails

theQualityof

Life

(QOL)

steerin

gcoun

cilu

nder

the

guidance

ofan

expe

rtbe

reavem

entcoordinator.

O.Stastny

etal.

(2016)

[58],

USA

Publiche

alth

nurse

Afte

rpu

bliche

alth

nurse

hasreceived

inform

ationof

coroner’s

investigator

families

arecontactedby

phon

e/em

ailtosche

dule

aho

mevisit(s).Friend

sand

family

may

beinvited.

Duringtheho

mevisit(s)

themainfocusisto

providesupp

ort,ed

ucation,

SIDSs

referrals,resources

andconn

ectwith

othe

rSIDSbe

reaved

families

-Ph

onecontact

-Hom

evisit(Edu

cate,

supp

ort,provide

resources,conn

ect

with

peers,referral)

Not

applicable

Autho

rsexpe

rience(PHN

SIDScoordinator)

Not

men

tione

dNot

men

tione

d


information (A,B,E,F,G,H,I,K,L,N), financial advice(F), videos containing information (L), educationalsupport meetings for peers and relatives (L),seminars or workshops on coping and grief (K), andinformation sessions (A,C,D,G,M) during whichHCPs provided information about the treatmentand autopsy (I), or answered questions (I).

(v) Remembrance activities included ceremonies orservices (F,H,K,N), and HCPs attending the funeral(E,L).

The empirical basis of the interventions and theoutcomes of the studiesMost interventions identified consisted of a descrip-tion of practices, sometimes based on years of experi-ence, but did not include an empirical or theoreticalbasis. Several studies did provide substantiation fortheir interventions such as a previous, non-specified,literature search (A,E), interviews and focus groups(B,E,G), or expert knowledge and special education(A,B,D,F,J,O). Only two interventions were developedusing a clear theoretical basis. One intervention wasbased on principles of stress and social support the-ory (B), and the other contained a psycho-educationalbereavement guide based on the principles of cogni-tive behavioural theory (K).The studies that evaluated an intervention, showed that

parents reported a positive experience with bereavementphotography and follow-up contact (A,B,C,E,G,J,L). Par-ents were grateful to receive photos of their child, andhelped HCPs feel better about their role (J). The outcomesof most of the empirical studies focused on how the par-ents had experienced the follow-up contact with the HCPswho had taken care of their child. Follow-up contact wasgenerally valued. It helped parents cope with their grief,provided closure, and gave parents a secure feeling of theongoing bond with the hospital and their child (A,B,C,E,G,L). Parents found follow-up meetings with HCPs and/orpeers helpful in learning to tolerate and understand griefbetter. Moreover, it stimulated further thinking and

discussion between the parents about the topics addressedin the meeting and helped parents to express their ideasand feelings concerning grief to each other and to theirfamily and friends (L,M).

The alignment between intervention components andtheoretical key conceptsGiven the lack of knowledge concerning the effective-ness of the interventions, the potential worth of thecomponents of intervention is evaluated by aligning thefive intervention components identified (i-v) to the keytheoretical concepts as described in the Methods section.These are: anticipatory grief; attachment to workingmodels and plans; appraisal processes; coping, and; con-tinuing bonds. Hereafter, all the components will be dis-cussed and hypothesised, considering how they alignwith the theoretical concepts identified (Table 4).

The acknowledgement of parenthood and the child’s lifeThis component includes facilitating parents to fulfil theirrole as a parent, and to acknowledge the identity of theirchild. Facilitating parents in their parental role is a compo-nent HCPs provide before and after death. The main strat-egy in these interventions is to enable parents to nurturetheir child and to acknowledge their child’s uniqueness[54]. Parents are facilitated to experience the bond withthe child, create memories, have a blessing ceremony, andsay their farewells [59, 60]. It allows parents to begin tocontemplate the idea that their child is dying, while ensur-ing that their child is as comfortable as possible [60].These practices support anticipatory grief, since they fos-ter emotional preparedness, allow parents to adjust slowlyto the fact that their child is dying, and help to create last-ing memories for parents to cherish after death [54]. Acertificate of life empowers parents to recognise the iden-tity of their child. In letting parents participate in the lastcare for their child, this also enables them to adjust, grad-ually, to the fact that their child is dying, and makes thetransition between the internal plans less abrupt.

Table 4 The alignment of theoretical key concepts and intervention components

Componentsconcerninganticipatory grief

Components concerningattachment working modelsand plans

Componentsconcerning theappraisal processes

Componentsconcerningcoping

Componentsconcerningcontinuing bonds

Acknowledgingparenthood and thechild’s life

+ + +

Keepsakes + + +

Follow-up contact + + + +

Education andinformation

+ + +

Remembrance activities + +

+: Intervention component supported by key theoretical concept


Establishing keepsakesHCPs take the initiative in creating keepsakes togetherwith, or in accordance with, the parents. These keepsakesprovide the parents with a tangible memory of the child.Especially in neonatology, where parents will not have beenoutside the hospital with their child, keepsakes provide par-ents with a way to cherish a part of their child, when thechild is no longer present. Establishing keepsakes can helpparents feel attached and close to their child and to providecomfort [54]. Over time, the keepsakes can help the parentsin remembering the child, and help parents with process-ing, conceptually, the loss, while they revise the autobio-graphical memories and the memories of the child in orderto adjust to the new reality. Over time, when the parentshave adjusted to the new reality, the tangible memories ofthe child serve as a form for expressing the continuation ofthe bond between the parents and their child.

Follow-up contactFollow-up contact with the hospital may take variousforms. Parents value ongoing contact with the hospitalstaff, since the hospital staff know the child and manyparents developed a bond with them over time [45–47].When parents feel that the HCPs remember their child,this is felt as an acknowledgement of the child’s identity,and a validation that their child has made an impact andmattered [45, 46]. This acknowledgement results in posi-tive reappraisal processes and adds positive meaning tothe past events. These positive reappraisals could alsofoster adaptive coping behaviours, for example the shar-ing of the story of the loss with friends and family. Thecontinuous reappraisal and coping behaviours in turn re-sult in altering the working models and plans becausethe loss is processed conceptually. This helps parents tofind a place for, and to define a new bond with, the de-ceased child in the new reality [47]. Follow-up contactwith HCPs and peer supporters, simply their presenceand conversations, help parents to cope with loss [40,43]. During follow-up contacts, HCPs can offer parentsan explanation of the course of treatment and the ra-tionale for certain decisions that were made. This is im-portant as parents often describe being in a haze duringthe end-of-life period of their child [44, 46]. Further-more, autopsy results are often shared in order to clarifythe physical illness [53, 54]. HCPs also have the oppor-tunity to reassure parents that there is nothing that theycould have done differently [58]. This helps parents tomake sense of the preceding events and to clarify thememories surrounding the death of their child [46, 53].This clarification, in turn, aids reappraisal of the situ-ation and past events, and provides parents with a formof closure. It also allows parents to readjust their mem-ories of the situation, address doubts about themselves,and treasure memories of their child, which results in

readjustment to new memories and thus creates newplans about themselves, their child, and the past events.

Education and informationInformation folders, booklets, workshops, and seminarscan help parents in regaining some control over the manydifferent challenges they face in a new, unknown, and in-secure, situation. It makes parents feel more prepared inpractical terms such as with financial aid, funeral arrange-ments, and in finding extra emotional assistance whenneeded [59]. An example of practical assistance might behow to provide explanations to, and support for, the sib-lings, reassuring parents that what they are feeling is nor-mal, actions which can be termed preparation and whichoffer a sense of validation [55, 59]. But practical assistancecould also include providing information about when andwho to turn to for extra support [55]. These forms of as-sistance support parents in coping with the new situationbecause it makes the new demands slightly more manage-able. The information provided, and the validation of theemotions they experience, also assist parents in creatingnew knowledge structures and plans with regard to theirgrief and the future they face. It helps the appraisal pro-cesses and offers new working models.

Remembrance activitiesThe remembrance activities provide an opportunity tofeel close to the child again and to recollect memoriesabout their life [60]. It is also a means of feeling sup-ported by friends, family, hospital staff, and the commu-nity, that may help parents to cope with the loss [51].These remembrance occasions provide a secure environ-ment where parents feel connected to the child and feelthe bond that they had, and that still exists. Remem-brance activities help parents in finding a way to con-tinue their bond with the child in the new reality.Religious or spiritual aspects of the events can also helpparents to make sense of, and find meaning in, thechild’s death. Such “meaning making” after the death isa helpful coping mechanism for parents, in which theycan revise their memories and plans surrounding thedeath of their child in a positive and helpful manner.

DiscussionThis review identified fifteen well-defined bereavement in-terventions provided by regular HCPs to support parentsof seriously ill children both at the end of their child’s lifeand after death. All interventions were clustered into fiveoverarching components of the intervention. These are:the acknowledgement of parenthood and the child’s life;establishing keepsakes; follow-up contact; education andinformation, and; remembrance activities. The majority ofinterventions started after the death of the child, and wereperformed by a nurse, assigned as the primary carer, or a


physician. Most of the empirical studies included in thisreview evaluated how to conduct the intervention and ex-periences with the interventions, but not their effective-ness. To compensate for this lack of evidence, thecomponents of intervention were assessed against a theor-etical synthesis on loss and grief, which revealed that allthe components from which the interventions were builtwere covered by theories on a conceptual level. The theor-etical synthesis did uncover that bereavement is charac-terised by the continuous process of adjusting to a newreality [18–21, 23, 26–30]. Five key theoretical conceptsclarify this process: anticipatory grief; attachment workingmodels and plans; the appraisal processes; coping behav-iours, and; continuing bonds. The theoretical synthesisshows the need for bereavement interventions to focus onthe continuous nature of grief, and thus, starting beforethe death and guiding parents through the grievingprocess. Most interventions we identified relied on a com-bination of multiple components or time points. However,few interventions reviewed here showed such a continu-ous process in supporting the parents.In our comparison of the components of intervention,

and the theoretical synthesis, we found HCPs pursued sev-eral underlying aims for providing bereavement care toparents. The interventions were offered by HCPs to en-hance the parents’ feeling of preparedness towards thedeath of their child. These comprise providing parentswith information, nurturing the child, and experiencingsupport from HCPs or their peer supporters. Those de-signed to enhance their ability to create memories of, andwith, their child include nurturing the child, treasuringkeepsakes, and recollecting memories at the subsequentremembrance ceremony. Finally, the interventions to pro-vide parents with comfort and reassurance involve makingmemories and keepsakes, answering questions and provid-ing comfort in follow-up, providing information in gen-eral, and remembering and acknowledging the child.These elements are not captured in a single moment, butrequire support at different moments and in a continuousnature [61]. A difference we noticed is that the importanceof supporting parents in their parental role, and acknow-ledging the identity of the child, may have a differentmeaning in neonatology compared to paediatrics [54, 62].The time in the hospital is often the only time these par-ents can make memories with their child and to nurturethem. The HCPs are often the only people, apart from thefamily, to have seen the child alive.Bereavement theories emphasise that dealing with loss

takes form in a transition towards a new reality [18–21, 23,26–30]. However, only four interventions included in thisreview commenced before the death of the child [50, 57, 59,60]. Yet, conversations between HCPs and parents aboutthe condition of their child, and their preparedness for thedeath of their child, can contribute positively to the

bereavement process after their child has died [25, 63]. Thepossible explanations for this are, firstly, that there is a deli-cate balance between preserving hope and letting go of thechild during the end-of-life phase. Most, but not all, parentsare able to make this transition [4, 64]. Most parents are in-tellectually aware that their child’s death is imminent, how-ever, emotional awareness usually follows at a later stage, ornot until after the death [65]. For the HCPs these phenom-ena, and the parental diversity, make it difficult to assesswhen parents are receptive to bereavement support duringthe end-of-life phase. Furthermore, this diversity tends toprovoke insecurity among HCPs. However, HCPs shouldbe able to influence parents’ awareness and openness to-wards bereavement support, for example by informing par-ents about the finality of curative options by sharinginformation honestly and considering whether to stop on-going curative treatment [65]. Secondly, given the diversityboth in parental responses to letting go of their child, andin their emotional awareness, it is difficult to create a stan-dardised intervention, including a protocol, for bereavementcare for parents during the end-of-life phase. Since our in-clusion criteria consisted of interventions that needed to bereplicable, and supported by a protocol or documents, thesekind of interventions could have been excluded. This couldmean that there is, in fact, attention for feelings of loss andgrief, prior to the death of the child, by HCPs in theircurrent daily practice. However, these practices are notstandardised and thus were not covered in this review.The comparison of key theoretical concepts and compo-

nents of intervention showed that interventions all ac-count for small fragmented pieces in the grieving process.But, also, that there are no interventions that emphasisethe continuous parental adjustment process as a whole.The regular HCPs who had been involved in the child’scare since diagnosis could be a significant factor in thiscontinuous care. Studies have shown that parents requireat least one meaningful follow-up contact with the HCPswho cared for their child [14, 66]. We propose that be-reavement care, including follow-up conversations, areimportant parts of the regular HCPs’ activities. There arethree main reasons for the integration of follow-up careinto the HCPs activities. Firstly, parents often have out-standing questions about their child’s care, illness, andtheir role in the period of the illness [67]. The regularHCPs are able to answer these questions since they havebeen part of the care prior to death. Secondly, the trust-worthiness and bonds that already exist between the HCPsand parents are very important [54]. Thirdly, parents seekproximity to their child - an acknowledgement of his orher life, and the impact the life has made; it helps parentsin the grieving process when the HCPs speak of theirmemories of the child, reflect on his or her unique iden-tity, and are effected by the child’s death [14, 45]. Anotherimportant element of the conversations between the HCPs


and parents could be psycho-education [68, 69]. Psycho-education encompasses information about what parentsare experiencing while preparing them for what they couldencounter during their journey through the grievingprocess. It has been shown to have positive effects on theself-efficacy of informal caregivers. Psycho-educationcould strengthen parents in their transition to a new real-ity where the child is no longer physically present, if theyunderstand which challenges they are going to face, andprepare them with helpful coping strategies [68]. Psycho-education might too have a positive effect on mental ap-praisals when a setback in the grieving process occurs andin validating the feelings parents experience as normal[70].Once a child dies, their parents are left with an over-

whelming sense of grief. They describe the time passing asa blur [44, 54]. Parents are not aware, during that period,of all the interventions and assistance HCPs could offerthem. However, options could be presented to parents,and the most appropriate could be chosen. Therefore, it isimportant that HCPs offer parents a broad range of inter-ventions [71]. This is also important because the key the-oretical concepts are not sequential. Instead they form acontinuum and the most dominant of these key conceptsalter according to the demands at a given time [18, 20, 21,27]. Also, effective coping is defined by a process of alter-nating between two or more different coping strategies,depending on the demands at a specific time [72]. If HCPscould determine, in what stage parents were at a giventime, or with which processes they experience difficulties,the appropriate components of intervention to aid thatprocess could be selected.

Strengths and limitationsThe search was constructed using a recently developedmethod, PALETTE, in addition to PRISMA. This washelpful in identifying all the relevant articles in relativelyyoung domains where terminology is still diffuse. To ourknowledge, given the difficulty of measuring outcomesin the field of paediatric palliative care, this is the firstsystematic review to give insight into the theoretical ef-fectiveness of bereavement interventions. In particular,the inclusion of replicable interventions provides HCPswith opportunities to implement them in their practice.A limitation of this systematic review concerns the in-clusion and exclusion criteria. These eliminated less de-veloped practices and potentially helpful professionalattitudes and behaviours out of sight. It is possible thatthese contain strategies that can be considered support-ive in parental grief. Also, we included replicable inter-ventions which could be implemented in practice sincethese interventions are supported by a protocol or clearguidelines. However, most interventions are not testedand offer little evidence in their support. This is required

before implementing an intervention. Testing these in-terventions might then be difficult due to the setting ofpaediatric palliative care. Therefore, the theoretical syn-thesis and alignment could only provide a form of theor-etical support for the interventions we reviewed.

ConclusionThis review provides an overview of well-defined, replic-able, bereavement interventions. The theoretical synthesisin this review provides a basis for the effectiveness of thecomponents of intervention. All five of these cover mul-tiple key concepts derived from theory. HCPs can choosemultiple interventions for different components to provideparents with a continuous form of bereavement care, aid-ing the transition that parents have to go through follow-ing their loss. Future research is needed on how thiscontinuous support can be established, which time pointsare crucial for providing bereavement care, and how newinterventions can be developed that align with this transi-tion, and thus, ultimately, help parents in adjusting totheir new reality.

Supplementary informationSupplementary information accompanies this paper at https://doi.org/10.1186/s12904-020-0529-z.

Additional file 1. Search strategy.

Additional file 2. Synthesis of theories on grief and loss.

AbbreviationsCOREQ: COnsolidated criteria for REporting Qualitative research;HCP(s): Health Care Professional(s); NICU: Neonatal Intensive Care Unit;PALETTE: Palliative cAre Literature rEview iTeraTive; PICU: Paediatric IntensiveCare Unit; PRISMA: Preferred Reporting Items for Systematic Reviews andMeta-Analyses; SIDS: Sudden Infant Death Syndrome

AcknowledgementsWe thank René Spijker for sharing his expertise in constructing the searchstring and for performing the electronic literature search. We thank PaulienWiersma for sharing her expertise in helping to conduct the preliminarysearches.

Authors’ contributionsEK, FJ, PB, JF, AH, ST, KG, and MK were involved in the development of theconception and design of this work. EK, FJ, KG, AH were involved in articleselection, data extraction, and quality appraisal. EK, MK, PB performed thetheoretical synthesis on grief theories. EK, FJ, PB, LD, JF, AH, ST, KG, and MKwere involved in the interpretation of data and in drafting or substantiallyrevising the manuscript for intellectual content. All authors reviewed andapproved the final manuscript.

FundingThe authors disclosed receipt of the following financial support for theresearch, authorship, and/or publication of this article. This review is part of alarger project: the emBRACE study (embedded bereavement care inpaediatrics). This work was supported by ZonMw [grant number 844001506].The funding party did not take part in the design of the systematic review,interpretation of the results, and in writing or revising the manuscript.

Availability of data and materialsNot applicable.


https://doi.org/10.1186/s12904-020-0529-z

https://doi.org/10.1186/s12904-020-0529-z

Ethics approval and consent to participateNot applicable.

Consent for publicationNot applicable.

Competing interestsThe authors declare that they have no competing interests.

Author details1Julius Center for Health Sciences and Primary Care, University MedicalCenter Utrecht, Universiteitsweg 100, 3584 CG Utrecht, The Netherlands.2Department Woman and Baby, Wilhelmina Childrens Hospital, Lundlaan 6,3584 EA Utrecht, The Netherlands. 3Department of clinical psychology,Utrecht University, Heidelberglaan 1, 3584 CS Utrecht, The Netherlands. 4ArqPsychotrauma Expert Group, Nienoord 5, 1112 XE Diemen, The Netherlands.

Received: 7 November 2019 Accepted: 19 February 2020

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