When a child dies: a systematic review of well-defined ...
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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 Page 2 of 22
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.
Kochen et al. BMC Palliative Care (2020) 19:28 Page 3 of 22
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.
Kochen et al. BMC Palliative Care (2020) 19:28 Page 4 of 22
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
Kochen et al. BMC Palliative Care (2020) 19:28 Page 5 of 22
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
Kochen et al. BMC Palliative Care (2020) 19:28 Page 6 of 22
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.
Kochen et al. BMC Palliative Care (2020) 19:28 Page 7 of 22
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.
Kochen et al. BMC Palliative Care (2020) 19:28 Page 8 of 22
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
Kochen et al. BMC Palliative Care (2020) 19:28 Page 9 of 22
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
Kochen et al. BMC Palliative Care (2020) 19:28 Page 10 of 22
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
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
Kochen et al. BMC Palliative Care (2020) 19:28 Page 11 of 22
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
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
Kochen et al. BMC Palliative Care (2020) 19:28 Page 12 of 22
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
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
Kochen et al. BMC Palliative Care (2020) 19:28 Page 13 of 22
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
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
Kochen et al. BMC Palliative Care (2020) 19:28 Page 14 of 22
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
-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
Kochen et al. BMC Palliative Care (2020) 19:28 Page 15 of 22
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
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
Kochen et al. BMC Palliative Care (2020) 19:28 Page 16 of 22
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
Kochen et al. BMC Palliative Care (2020) 19:28 Page 17 of 22
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
Kochen et al. BMC Palliative Care (2020) 19:28 Page 18 of 22
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
Kochen et al. BMC Palliative Care (2020) 19:28 Page 19 of 22
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.
Kochen et al. BMC Palliative Care (2020) 19:28 Page 20 of 22
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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