ArticlePDF Available

Bereaved mothers' and fathers' prolonged grief and psychological health 1‐5 years after loss – a nationwide study

Authors:

Abstract and Figures

Objective To assess differences in prolonged grief, depression, posttraumatic stress and sleep disturbances in bereaved parents across years since loss (1‐5 years) and by gender, and to assess potential interactive effects of time since loss and gender on bereavement outcomes. Methods This study examined symptom levels of Prolonged Grief Disorder, depression, posttraumatic stress and insomnia in bereaved parents. A sample, including 133 mothers and 92 fathers who had lost a child to cancer 1‐5 years previously, subdivided to five subsamples, one for each year since loss. ANOVA was used to assess differences in symptom levels, related to years since loss and gender. Results Regardless of how many years had passed since the loss, symptom levels of prolonged grief, depression, posttraumatic stress symptoms and insomnia, were elevated in all subsamples. Mothers showed higher symptom levels of prolonged grief, depression and posttraumatic stress than fathers. However, no significant interaction effects were found between years since loss and gender on any of the symptom levels. Conclusions Cancer‐bereaved mothers and fathers are vulnerable to prolonged grief and psychological symptoms up to five years after the death of their child. Findings highlight that bereaved parents may need long‐term support and the results deserve further attention in research and clinical care.
Content may be subject to copyright.
PAPER
Bereaved mothers' and fathers' prolonged grief and
psychological health 1 to 5 years after lossA nationwide study
Lilian Pohlkamp
1
|Ulrika Kreicbergs
1,2
|Josefin Sveen
1,3
1
Department of Health Care Sciences,
Palliative Research Centre, Ersta Sköndal
Bräcke University College, Stockholm, Sweden
2
Department of Women's and Children's
Health, Karolinska Institutet, Stockholm,
Sweden
3
Department of Neuroscience, Psychiatry,
Uppsala University, Uppsala, Sweden
Correspondence
Lilian Pohlkamp, Department of Health Care
Sciences, Palliative Research Centre, Ersta
Sköndal Bräcke University College, Stockholm,
Sweden.
Email: lilian.pohlkamp@esh.se
Funding information
Barncancerfonden, Grant/Award Number:
PR20150050; TJ20150021; Ersta Sköndal
Bräcke University College; Gålö Foundation;
Swedish Childhood Cancer Foundation, Gålö
Foundation, and Ersta Sköndal Bräcke Univer-
sity College
Abstract
Objective: To assess differences in prolonged grief, depression, posttraumatic
stress, and sleep disturbances in bereaved parents across years since loss (15 years)
and by gender and to assess potential interactive effects of time since loss and gender
on bereavement outcomes.
Methods: This study examined symptom levels of prolonged grief disorder, depres-
sion, posttraumatic stress, and insomnia in bereaved parents. A sample, including 133
mothers and 92 fathers who had lost a child to cancer 1 to 5 years previously,
subdivided to five subsamples, one for each year since loss. Analysis of variance
(ANOVA) was used to assess differences in symptom levels, related to years since
loss, and gender.
Results: Regardless of how many years had passed since the loss, symptom levels
of prolonged grief, depression, posttraumatic stress symptoms, and insomnia were
elevated in all subsamples. Mothers showed higher symptom levels of prolonged
grief, depression, and posttraumatic stress than fathers. However, no significant
interaction effects were found between years since loss and gender on any of the
symptom levels.
Conclusions: Cancerbereaved mothers and fathers are vulnerable to prolonged
grief and psychological symptoms up to 5 years after the death of their child. Findings
highlight that bereaved parents may need longterm support, and the results deserve
further attention in research and clinical care.
KEYWORDS
childhood cancer, depression, fathers, mothers, insomnia, pediatric oncology, PGD, posttraumatic
stress, prolonged grief
1|INTRODUCTION
The death of a child violates the perceived order of living in the family
life cycle; combined with strong attachment bonds, it puts parents at
increased risk for severe suffering and an elevated risk for developing
prolonged grief disorder (PGD) and other negative psychological
health outcomes.
1,2
Grief reactions in PGD are essentially similar to
those in natural grief, but when separation distress is so persistent
and pervasive that it impairs the bereaved person's functioning in daily
life more than 6 months after the loss, a PGD diagnosis may be appli-
cable according to ICD11.
3
A recent metaanalysis reported a pooled
PGD prevalence rate of 10% in nonviolent adult bereavement,
4
but
PGD prevalence rates tend to be higher in samples of bereaved
parents.
5,6
Common psychological symptoms associated with bereavement
are depression, posttraumatic stress, and insomnia.
7
Although
prolonged grief, depression, and posttraumatic stress are strongly
related, they are distinguishable concepts.
8
Evidence of this
Received: 25 February 2019 Revised: 6 May 2019 Accepted: 13 May 2019
DOI: 10.1002/pon.5112
PsychoOncology. 2019;17. © 2019 John Wiley & Sons, Ltd.wileyonlinelibrary.com/journal/pon 1
distinctiveness includes a longitudinal study on bereaved couples,
showing that grief was predicted by bereavementspecific factors,
while depression was predicted by individual factors.
9
Although the prevalence of prolonged grief and depression in
bereaved parents is frequently studied, posttraumatic stress and sleep
disturbances have been studied less. A recent review on bereaved par-
ents suggests that the death of an infant is such a traumatic event that
health care professionals should keep in mind the possibility of post-
traumatic stress disorder (PTSD) when meeting bereaved parents.
10
A recent longitudinal study showed elevated levels of posttraumatic
stress symptoms in parents bereaved owing to a child's cancer.
11
While there is a growing body of research on the intensity of grief
reactions and other psychological health problems in parents who
have lost a child to cancer, a recent review found that many of these
studies had small sample sizes or did not use validated measures.
12
Another common health problem associated with bereavement is
sleep disturbance.
13,14
A study
15
reported that fathers were more
likely to have sleep disturbances than mothers were, 4 to 9 years after
the loss of a child to cancer. In addition, disturbed sleep has been
associated with elevated symptom levels of PGD,
16
depression,
17
and posttraumatic stress.
18
Theories on grief and bereavement have evolved during recent
decades; Bowlby's and Parke's pioneering works on separation stage
theory and attachment theory led to greater understanding of
bereavement adjustment.
19,20
They suggested that how grief is expe-
rienced and expressed may be related to individual attachment styles.
Further exploration of these concepts resulted in the formulation of
the dual process model of coping,
21
which is now a leading conceptual
framework for research on coping with bereavement. Coming to terms
with the loss of a child takes timeoften yearsbut few studies have
examined the grief of mothers and fathers in relation to the time since
loss. The aim of this study was to assess differences in prolonged grief,
depression, posttraumatic stress, and sleep disturbances in bereaved
parents across years since loss (15 years) and by gender. A secondary
aim was to assess potential interactive effects of time since loss and
gender on bereavement outcomes.
2|METHODS
2.1 |Design
This crosssectional study was based on data from a nationwide postal
Swedish survey.
2.2 |Participants
Eligible parents were identified through the Swedish Childhood Cancer
Registry (a national database on all children who receive a cancer diag-
nosis) combined with the Cause of Death Registry and the Swedish
Population Register at the Swedish Tax Agency. Inclusion criteria were
being a parent of a child (age 024 years) who had died during the
period August 2010 to July 2015 of cancer (age at diagnosis 016
years) in Sweden. At the time of the study, the parent should live in
Sweden and understand Swedish. No significant differences were
found between responders and nonresponders regarding the parents'
age at the time of the study, age at the time of the child's death, years
since loss, child's gender, and child's age at time of diagnosis and death.
The only exception was that the percentage of women was higher
among responders than among nonresponders (X
2
= 8.83, P< .05).
Ethical approval for this study was obtained from the Regional Ethical
Review Board in Stockholm, Sweden (No: 2015/218331/5).
2.3 |Procedure
Eligible parents (N = 512) received an information letter describing the
study's purpose and procedures. All potential participants could con-
tact the research group with questions about the study. Each parent
of each child was contacted separately by telephone and asked
whether he or she would agree to participate. Parents with unlisted
telephone numbers were sent a letter requesting that they contact
us by phone or email. A second letter of invitation was sent after 1
month to those who had not responded. Seventysix parents could
not be reached, 63 declined, and 373 parents consented to participate
and were sent a questionnaire with a prepaid return envelope. Parents
who did not return the questionnaire within 1 month were contacted
by telephone. Of the 373 parents who agreed to participate, 232
returned the questionnaire. Seventysix parent dyads were included;
however, we do not know if they were living together at the time of
the study.
2.4 |Measures
The questionnaire was based on an earlier survey
22
and contained
questions on demographics, health care experiences from diagnosis
until the child's death, and family communication. While developing
the questionnaire, eight facetoface validation interviews with
cancerbereaved parents were conducted by the first author (L.P.),
and questions were adjusted according to their suggestions.
Prolonged grief disorder13 (PG13)
23
was used to assess PGD. It
consists of 13 items: two items on duration and impairment that are
to be answered yesor no,and 11 items assessing cognitive, behav-
ioral, and emotional symptoms experienced during the past month,
rated on a 5point frequency scale ranging from: not at allto several
times a day(scoring 15), or an intensity scale ranging from not at all
to overwhelmingly(scoring 15). PG13 is scored as a continuous
measure by summing the eleven symptom items and excluding the
two duration and functional impairment items.
23
The total score
ranges from 11 to 55, with a higher score indicating more symptoms
of PGD, cutoff
24
equal to or more than 35. Cronbach's αwas 0.89.
The MontgomeryÅsberg Depression Rating Scale (MADRS)
25
was
used to assess symptoms of depression. It consists of nine items: sad-
ness, inner tension, reduced sleep, reduced appetite, concentration
difficulties, fatigue, inability to feel, pessimistic thoughts, and suicidal
thoughts. The items are rated on a 7point scale (scoring 06), and
2POHLKAMP ET AL.
the total score ranges from 0 to 54, a higher score indicating a greater
risk of depression. Range for mild depression is 13 to 19, moderate 20
to 34 and cutoff for severe depression equal to or more than 34.
Cronbach's αwas 0.90.
The Posttraumatic Stress Disorder Checklist for DSM5 (PCL5)
26
was
used to assess symptoms of PTSD. It consists of 20 items divided into
four subscales: intrusion, avoidance, negative alterations in cognitions
and mood, and alterations in arousal and reactivity. The items are
rated on a 5point scale (scoring 04), and the total score ranges from
0 to 80, with a higher score indicating more symptoms of PTSD, cut
off equal to or more than 33. Cronbach's αwas 0.94.
The Insomnia Severity Index (ISI)
27
was used to assess symptoms of
insomnia and consisted of seven items: severity of problems falling
asleep, staying asleep, early morning awakening problems, sleep dis-
satisfaction, interference of sleep difficulties with daytime functioning,
noticeability of sleep problems to others, and distress caused by the
sleep difficulties. The items are rated on a 5point scale from no
problemto severe problem(scoring 04) and the total score ranges
from 0 to 28, with a higher score indicating more symptoms of insom-
nia, cutoff equal to or more than 10. Cronbach's αwas 0.94.
2.5 |Data analysis
Significance level for all analyses was P< .05. Characteristics of
responders and nonresponders were compared with Wilcoxon's
ranksum test and χ
2
analysis. Spearman correlation analyses and scat-
ter plots were used to evaluate dependency of data, as dyads of par-
ents of the same child were included (ie, 152 of the 232 parents in
the study). Analysis indicated a weak but significant correlation for
MADRS (Spearman's rho 0.26, .03) and a moderate correlation for
PG13 (Spearman's rho 0.44, P< .001) between mothers and fathers
of the same child, while the analysis showed no significant correlations
for PCL5 and ISI. Since the correlations between dyads were so weak,
the data were treated as independent in the further analyses.
First, descriptive analysis was conducted on demographic charac-
teristics of the total sample. Then, the sample was divided into five
subsamples according to the number of years since loss. Once mean
scores for the subsamples were retrieved, scores for each subsample
were assessed separately for mothers and fathers.
Finally, twoway analysis of variance (ANOVA) was used to assess
differences in psychological symptom levels associated with years
since loss and parent's gender, as well as interaction effects between
time since loss and gender. IBM SPSS Statistics version 22 was used
for all statistical analysis.
3|RESULTS
3.1 |Sociodemographic characteristics
Demographic characteristics of the parents and deceased children are
summarized in Table 1. At the time of the study the mean age of the
parents was 46.0 years; 133 (59%) were mothers and 92 (41%)
fathers; 196 (87%) parents were either employed or studying, and
126 parents (56%) lived in an urban area. When examining statistical
differences between mothers and fathers with regards to the
TABLE 1 Characteristics of the bereaved parents (n = 225) and
deceased children (n = 151)
Mean (SD) Range
Parent age at study 46.0 (8.15) 2466
Parent age at child death 42.2 (8.01) 2062
Childs' illness length in years 2.7 (3.51) 021
Years since loss 3.1 (1.47) 15
Characteristics of the parents at the time of the study n (%)
Parent gender
Female 133 (59%)
Male 92 (41%)
Other children than the deceased child 201 (90%)
Not stated 1
Religious 90 (40%)
Not religious 131 (58%)
Marital status
Married/cohabiting 206 (91%)
Single 17 (8%)
Not stated 2 (1%)
Level of education
Primary/secondary school 117 (52%)
University 107 (48%)
Not stated 1
Residential region
Rural 96 (43%)
Town 71 (32%)
City 55 (24%)
Not stated 2 (1%)
Employment
Employed/studying 196 (87%)
On sick/parental leave/unemployed 28 (12%)
Not stated 1 (0.4%)
Characteristics of the deceased children n (%)
Child gender
Girl 66 (44%)
Boy 85 (56%)
Diagnoses
Brain tumors 56 (37%)
Leukemia/lymphoma 42 (28%)
Sarcoma 22 (14%)
Other 32 (21%)
Child age at diagnosis 7.25 (5.32) 016
Child age at death 9.93 (6.54) 024
POHLKAMP ET AL.3
characteristics in Table 1, no statistical differences were found except
for statistical differences in age and employment; fathers were older
than the mothers, t(230) = 2.05, P< .05, and fathers were in employ-
ment more than mothers, χ
2
= (1, N = 224) 9.49, P< .01, as more
mothers were on parental leave. The mean age of the deceased chil-
dren (n = 151) was 7.3 years at diagnosis and 9.9 years at death.
3.2 |Symptoms of prolonged grief, depression,
posttraumatic stress, and insomnia
All mean scores in the total sample as well as for mothers and fathers
separately are summarized in Table 2 and for subsamples by year in
Table 3. Figure 1 illustrates symptom levels for mothers and fathers
in subsamples. Parents' average score for prolonged grief was 29.7
with 32.9% (n = 74) of parents scoring over the cutoff indicating pos-
sible PGD. Parents' average score on depression was 12.9, indicating
mild depression. The average score for posttraumatic stress symptoms
was 21.3, indicating moderate symptom levels. Parents reported an
average insomnia score of 10.1, which is over cutoff. Table 2 presents
the scores for symptoms of PGD, depression, posttraumatic stress,
and insomnia, subdivided according to number of years since loss.
3.3 |Differences in psychological symptom levels
across years since loss and between mothers and
fathers
The twoway ANOVA revealed no statistically significant main effect
of years since loss on symptoms of PGD, F
4
= 0.74, .57. Mothers
had significantly higher PGD symptom levels than fathers, F
1
=
6.22, .01. However, there was no interaction effect between years
since loss and gender on PGD, F
4
= 0.98, .42.
We found no significant main effect of years since loss on symp-
toms of depression, F
4
= 0.27, .90. There was, however, a significant
effect for gender on symptoms of depression, F
1
= 4.06, .05, with
mothers scoring higher than fathers. There was no sign of significant
interaction between years since loss and the parents' gender on
depression, F
4
= 1.17, .32.
No significant difference was observed in posttraumatic stress
symptoms across years since loss, F
4
= 0.49, .75. Mothers scored sig-
nificantly higher on posttraumatic stress symptoms than fathers, F
1
=
5.24, .02. There was no significant interaction between years since
loss and gender on posttraumatic stress symptoms F
4
= 1.60, .17.
In symptoms of insomnia, we saw no significant effect of years
since loss, F
4
= 1.12, .35 and no difference between genders, F
1
=
1.92, .17. There was no significant interaction between years since
loss and gender on insomnia F
4
= 1.16, .33.
Symptom levels of mothers and fathers in the subsamples
corresponding to years since loss are illustrated in Figure 1. Overall,
symptom levels are elevated for all subsamples. Even though we
found no significant interaction effect between years since loss and
gender on the bereavement outcomes, the graphs show a pattern of
mothers reporting more intense reactions than fathers in years 1 to
3, while the intensity of mothers' and fathers' in grief and psychologi-
cal reactions are more similar in years 4 and 5. However, for insomnia,
the pattern is somewhat different.
4|DISCUSSION
This study examined bereavement outcomes and psychological symp-
toms in a Swedish sample of 232 parents who had lost a child to can-
cer 1 to 5 years earlier. Parents reported elevated levels of prolonged
grief, depression, posttraumatic stress, and insomnia across the first 5
years postloss. Mothers reported higher symptom levels of prolonged
grief, depression, and posttraumatic stress than fathers, but no differ-
ences between mothers and fathers were found regarding insomnia.
When splitting the total sample into subsamples according to years
since loss, there was no significant interaction effect between years
since loss and gender on the symptom levels of prolonged grief,
depression, posttraumatic stress, and insomnia.
This study showed that adjustment to a loss for parents takes at
least 5 years, since all the subsamples divided by years since loss
showed similar symptom levels. Even though the present study is
TABLE 2 Selfreported mean symptom levels in bereaved parents
All Parents Mothers Fathers
Mean (SD) Mean (SD) Mean (SD)
Prolonged grief 29.70 (SD 9.54) 31.01 (10.11) 27.80 (8.34)
Depression 12.91 (SD 9.30) 13.89 (9.64) 11.36 (8.59)
Posttraumatic stress 21.34 (SD 15.94) 23.40 (16.59) 18.24 (14.58)
Insomnia 10.12 (SD 7.46) 10.70 (7.63) 9.11 (7.06)
TABLE 3 Selfreported symptom levels in bereaved parents; subsamples by years since loss
Years since loss
Prolonged grief Depression Posttraumatic Stress Insomnia
Mean (SD; n) Mean (SD; n) Mean (SD; n) Mean (SD; n)
N = 225 N = 225 N = 222 N = 222
1 30.47 (9.59; 45) 12.22 (9.00; 45) 19.33 (14.21; 44) 9.56 (7.23; 43)
2 31.26 (10.28; 43) 13.86 (10.49; 42) 23.36 (18.20; 43) 9.59 (7.80; 42)
3 29.56 (9.52; 45) 12.84 (10.17; 45) 20.26 (15.27; 43) 8.98 (6.35; 45)
4 29.14 (9.64; 37) 13.79 (8.97; 38) 22.48 (16.08; 37) 11.92 (8.85; 39)
5 28.35 (8.95; 55) 12.20 (8.23; 55) 21.44 (16.11; 55) 10.65 (7.10; 53)
4POHLKAMP ET AL.
not longitudinal, a pattern was observed where mothers showed
higher symptom levels and fathers showed lower symptom levels at
1year postloss. However, at 5 years postloss, fathers' symptoms,
which had been lower at year 1, were the same or even higher than
mothers in later years. Similarly, Ljungman et al
11
found that cancer
bereaved mothers reported initially higher symptom levels of post-
traumatic stress, which declined from 9 months to 5 years postloss;
fathers' posttraumatic stress symptoms were initially lower than
mothers' but had a weaker decline, and at 5 years postloss, mothers
and fathers had similar symptom levels. A recent review on parental
grief concluded that the grief experiences after the loss of a child
are generally so long lasting and severe that they might warrant paren-
tal grief being considered a distinct subtype of grief.
1
In the present study, both mothers and fathers report values near
or over the cutoff for insomnia symptoms. There is growing evidence
for sleep disturbance being associated with mental health symptoms
following loss,
28
which is consistent with research in other populations
showing that long lasting sleep disturbance is related to poor psycho-
logical and physical health.
17
This indicates that parents may also suf-
fer from multiple psychological or physiological symptoms that are
associated with insomnia.
On a group level, mothers in this study reported more symptoms
than fathers. This is consistent with several studies showing a higher
risk for mothers than fathers regarding psychological ill health after
the loss of a child. For example, bereaved mothers are reported to
show more intense grief reactions,
29,30
more symptoms of depres-
sion,
31
and more posttraumatic stress symptoms
32
than fathers. Possi-
ble theoretical explanations for differences between mothers' and
fathers' grief reactions may be found in the dual process model of
coping with bereavement. To undertake the process of adjustment,
oscillating between two types of coping is needed.
21
While women
tend to use lossoriented coping, focusing on their grief and express-
ing emotions, men often prefer more externally oriented coping,
engaging in practical tasks; this may reflect cultural and societal habits
regarding behavior and emotional reactions in both genders.
33
How individuals adjust to bereavement is predicted by various fac-
tors,
34
but the grief experienced by parents is generally very severe,
35
probably reflecting the strong attachment relationship between par-
ents and children. Parents with severely ill children often develop
strong relationships with health care staff whom they come to rely
on in a distressed situation. The need of the parents for continued
connection with health care staff and hospital community, thus offer-
ing them access to available attachment figures, may be considered
when developing interventions aimed at improving parents' psycho-
logical bereavement outcomes. Standardized followups of the parents
will enable identification of those at risk for psychological symptoms
and offer them targeted support if needed.
6
The results of this study
indicate that bereaved parents may need access to support up to 5
years postloss.
Lichtenthal et al
36
showed that many cancerbereaved parents do
not receive bereavement support, partly because the loss is not only
too painful to talk about but also due to difficulties in finding such ser-
vices. Currently, childhood cancer centers often lack routines for
assessment of the parents' needs of bereavement care, prior to and
postloss, and even if such services are available, there are large varia-
tions in how they are delivered.
37
The other recommended standard is
communitybased resources as a sustainable framework for bereave-
ment care, but the availability and quality of such support are highly
variable.
38
Therefore, standardized bereavement support is suggested
to be included as an integral part of pediatric care settings. Therapeu-
tic alliances between parents and health care professionals are already
established during the child's illness, which may help facilitate the
FIGURE 1 Symptom levels for mothers and
fathers in subsamples by years since loss. The
maximum numbers on the yaxes reflect the
specific score range of each instrument
POHLKAMP ET AL.5
adjustment and the healing of the parents following the loss of their
child.
39
Clearly, grief after the loss of a child deserves attention in its
own right, both in future research and in the development of bereave-
ment care.
4.1 |Study limitations
This is the first study to examine both prolonged grief, depression,
posttraumatic stress, and insomnia by means of validated instruments
in a total population of parents in Sweden who had lost a child to can-
cer 1 to 5 years previously. Other strengths include the equal gender
distribution among responders and the small number of missing
responses in the questionnaire. One limitation is that the unavailability
of data on the psychological health of nonresponders, which limits the
generalizability of the results. Since the results of this study are based
on a Swedish nationwide population, we can speculate that our results
could be valid for all parents in Sweden who have lost a child to
cancer. Because of cultural differences in grief and bereavement care,
we cannot be certain that our results would be generalizable to other
cultural contexts or other causes of death. Another limitation is that
the results are based on selfreported data, and no clinical assessment
interviews were conducted.
4.2 |Clinical implications and conclusions
The death of a child has longlasting effects on the psychological
health of the parents. Cancerbereaved mothers and fathers are vul-
nerable to prolonged grief, depression, posttraumatic stress symp-
toms, and sleep disturbances up to 5 years after the death of their
child. Mothers showed higher symptom levels of prolonged grief,
depression, and posttraumatic stress than fathers. However, we found
no interaction effect of time and gender on parents' grief over the first
5 years following loss. Since the results indicate that some cancer
bereaved parents may suffer from prolonged grief and psychological
symptoms at least up to 5 years after the death of their child, clinicians
should be aware of this when meeting bereaved parents. This is a
much longer timespan than is current practice for bereavement care
in most pediatric oncology settings. The longlasting psychological
problems reported by the parents in the present study underscore
the need to establish policy guidelines for provision of psychological
support to cancerbereaved parents, who may need support even
years after a child's death.
ACKNOWLEDGEMENTS
We thank the parents who participated in the study. This study was
financially supported by the Swedish Childhood Cancer Foundation,
Gålö Foundation, and Ersta Sköndal Bräcke University College.
CONFLICTS OF INTEREST
None declared.
ETHICAL STANDARDS
The authors assert that all procedures contributing to this work
comply with the ethical standards of the relevant national and institu-
tional committees and with the Helsinki Declaration of 1975, as
revised in 2008.
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available on
request from the corresponding author. The data are not publicly
available due to privacy or ethical restrictions.
ORCID
Lilian Pohlkamp https://orcid.org/0000-0002-4142-5967
Josefin Sveen https://orcid.org/0000-0002-5523-8126
REFERENCES
1. Morris S, Fletcher K, Goldstein R. The grief of parents after the death
of a young child. J Clin Psychol Med Settings. 2018;25:118.
2. Barrera M, D'Agostino NM, Schneiderman G, Tallett S, Spencer L,
Jovcevska V. Patterns of parental bereavement following the loss of
a child and related factors. OMEGA J Death Dying. 2007;55(2):
145167.
3. ICD11 for Mortality and Morbidity Statistics [Internet]. 2018. https://
icd.who.int/browse11/lm/en#/http%3a%2f%2fid.who.int%2ficd%
2fentity%2f1183832314.
4. Lundorff M, Holmgren H, Zachariae R, FarverVestergaard I, O'Connor
M. Prevalence of prolonged grief disorder in adult bereavement: a sys-
tematic review and metaanalysis. J Affect Disord. 2017;212:138149.
5. Kersting A, Brahler E, Glaesmer H, Wagner B. Prevalence of compli-
cated grief in a representative populationbased sample. J Affect
Disord. 2011;131(13):339343.
6. Lichtenthal W, Sweeney C, Roberts K, et al. Bereavement followup
after the death of a child as a standard of care in pediatric oncology.
Pediatr Blood Cancer. 2015;62(Suppl 5):S834S869.
7. Stroebe M, Schut H, Stroebe W. Health outcomes of bereavement.
Lancet. 2007;370(9603):19601973.
8. Aoyama M, Sakaguchi Y, Morita T, et al. Factors associated with possi-
ble complicated grief and major depressive disorders. Psychooncology.
2018;27(3):915921.
9. Wijngaardsde Meij L, Stroebe M, Schut H, et al. Couples at risk follow-
ing the death of their child: predictors of grief versus depression. J
Consult Clin Psychol. 2005;73(4):617623.
10. Christiansen DM. Posttraumatic stress disorder in parents following
infant death: a systematic review. Clin Psychol Rev. 2017;51:6074.
11. Ljungman L, Hoven E, Ljungman G, Cernvall M, von Essen L. Does time
heal all wounds? A longitudinal study of the development of posttrau-
matic stress symptoms in parents of survivors of childhood cancer and
bereaved parents. Psychooncology. 2015;24(12):17921798.
12. Rosenberg A, Baker K, Syrjala K, Wolfe J. Systematic review of psycho-
social morbidities among bereaved parents of children with cancer.
Pediatr Blood Cancer. 2012;58(4):503512.
13. Buckley T, Sunari D, Marshall A, Bartrop R, McKinley S, Tofler G. Phys-
iological correlates of bereavement and the impact of bereavement
interventions. Dialogues Clin Neurosci. 2012;14(2):129139.
6POHLKAMP ET AL.
14. Boelen PA, Lancee J. Sleep difficulties are correlated with emotional
problems following loss and residual symptoms of effective prolonged
grief disorder treatment. Depress Res Treat. 2013;2013:739804.
15. Lannen PK, Wolfe J, Prigerson HG, Onelov E, Kreicbergs UC. Unre-
solved grief in a national sample of bereaved parents: impaired
mental and physical health 4 to 9 years later. J Clin Oncol Off J Am
Soc Clin Oncol. 2008;26(36):58705876.
16. Prigerson H, Frank E, Kasl S, et al. Complicated grief and bereavement
related depression as distinct disorderspreliminary empirical valida-
tion in elderly bereaved spouses. Am J Psychiatry. 1995;152(1):2230.
17. Alvaro PK, Roberts RM, Harris JK. A systematic review assessing
bidirectionality between sleep disturbances, anxiety, and depression.
Sleep. 2013;36(7):10591068.
18. Germain A, Hall M, Krakow B, Katherine Shear M, Buysse DJ. A brief
sleep scale for posttraumatic stress disorder: Pittsburgh Sleep Quality
Index Addendum for PTSD. J Anxiety Disord. 2005;19(2):233244.
19. Parkes C. Attachment across the life cycle. London: Routledge; 1993.
20. Bowlby J. Loss, sadness and depression. London: Random House UK
Limited; 1980.
21. Stroebe M, Schut H. The dual process model of coping with bereave-
ment: rationale and description. Death Stud. 1999;23(3):197224.
22. Kreicbergs U, Valdimarsdottir U, Onelov E, Henter JI, Steineck G. Anx-
iety and depression in parents 49 years after the loss of a child owing
to a malignancy: a populationbased followup. Psychol Med.
2004;34(8):14311441.
23. Prigerson HG, Horowitz MJ, Jacobs SC, et al. Prolonged grief disorder:
Psychometric validation of criteria proposed for DSMV and ICD11.
PLoS Med. 2009;6(8):e1000121.
24. Pohlkamp L, Kreicbergs U, Prigerson HG, Sveen J. Psychometric prop-
erties of the prolonged grief disorder13 (PG13) in bereaved Swedish
parents. Psychiatry Res. 2018;267:560565.
25. Montgomery SA, Asberg M. A new depression scale designed to be
sensitive to change. Br J Psychiatry. 1979;134(4):382389.
26. Weathers FW, Litz BT, Keane TM, Palmieri PA, Marx B, Schnurr PP.
The PTSD Checklist for DSM5 (PCL5). Scale available from the
National Center for PTSD at www.ptsd.va.gov. 2013.
27. Morin CM. Insomnia: Psychological assessment and management. New
York: Guilford Press; 1993.
28. Monk TH, Germain A, Reynolds CF. Sleep disturbance in bereavement.
Psychiatr Ann. 2008;38(10):671675.
29. Büchi S, Mörgeli H, Schnyder U, et al. Grief and posttraumatic growth
in parents 26 years after the death of their extremely premature
baby. Psychother Psychosom. 2007;76(2):106114.
30. Keesee NJ, Currier JM, Neimeyer RA. Predictors of grief following the
death of one's child: the contribution of finding meaning. J Clin Psychol.
2008;64(10):11451163.
31. Vance J, Najman J, Thearle M, Embelton G, Foster W, Boyle F. Psycho-
logical changes in parents eight months after the loss of an infant from
stillbirth, neonatal death, or sudden infant death syndromea longitu-
dinal study. Pediatrics. 1995;96(5):933938.
32. Christiansen DM, Elklit A, Olff M. Parents bereaved by infant death:
PTSD symptoms up to 18 years after the loss. Gen Hosp Psychiatry.
2013;35(6):605611.
33. Dyregrov A, Matthiesen SB. Similarities and differences in mothers'
and fathers' grief following the death of an infant. Scand J Psychol.
1987;28(1):115.
34. Stroebe M, Folkman S, Hansson RO, Schut H. The prediction of
bereavement outcome: development of an integrative risk factor
framework. Soc Sci Med. 2006;63(9):24402451.
35. Dias N, Brandon D, Haase JE, Tanabe P. Bereaved parents' health sta-
tus during the first 6 months after their child's death. Am J Hosp Palliat
Care. 2018;35(6):829839.
36. Lichtenthal WG, Corner GW, Sweeney CR, et al. Mental health ser-
vices for parents who lost a child to cancer: if we build them, will
they come. J Clin Oncol Off J Am Soc Clin Oncol. 2015;33(20):
22462253.
37. Wiener L, Rosenberg AR, Lichtenthal WG, Tager J, Weaver MS. Per-
sonalized and yet standardized: an informed approach to the
integration of bereavement care in pediatric oncology settings. Palliat
Support Care. 2018;16(6):706711.
38. Donovan LA, Wakefield CE, Russell V, Cohn RJ. Hospitalbased
bereavement services following the death of a child: a mixed study
review. Palliat Med. 2015;29(3):193210.
39. Morris SE, Dole OR, Joselow M, Duncan J, Renaud K, Branowicki P.
The development of a hospitalwide bereavement program: ensuring
bereavement care for all families of pediatric patients. J Pediatr Health
Care. 2017;31(1):8895.
How to cite this article: Pohlkamp L, Kreicbergs U, Sveen J.
Bereaved mothers' and fathers' prolonged grief and psycholog-
ical health 1 to 5 years after lossA nationwide study. Psycho
Oncology. 2019;17. https://doi.org/10.1002/pon.5112
POHLKAMP ET AL.7
... Such an experience also brings detrimental health consequences, regardless of its timing (Goldstein et al., 2018;Pohlkamp et al., 2019). For example, bereaved parents report lower levels of well-being (Rogers et al., 2008) and poorer health-related life quality than their non-bereaved counterparts (Song et al., 2010), also after a considerably long time since the loss (e.g., Horesh et al., 2018;Rubin, 1993). ...
... Moreover, descriptive examinations showed that bereaved men had higher levels of affectionate touch than bereaved women in both Loss and Comparison Groups. Although there are some mixed findings regarding the grief reactions of men and women, especially in response to nonchild deaths, studies have highlighted that women may be more vulnerable to experiencing depression and post-traumatic symptoms than men after child loss (e.g., Pohlkamp et al., 2019). Such symptoms were shown to be negatively associated with parents' romantic relationship functioning (Lambert et al., 2012) and feelings of intimacy (Riggs, 2014). ...
Article
Full-text available
Although child loss impairs well-being, its impact on behavioral exchanges between bereaved parents remains understudied. We compared bereaved and non-bereaved couples regarding affectionate touch levels, the role of affectionate touch in intimacy, and the association between partners' affectionate touch similarity and intimacy. Bereaved (228 couples, 27 individuals) and non-bereaved (258 couples, seven individuals) people participated in our seven-day diary study. Although bereaved and non-bereaved men reported equal affectionate touch, bereaved women's affectionate touch was lower than non-bereaved women's. Despite this discrepancy, multi-level analyses revealed that affectionate touch concurrently benefited both genders' intimacy in bereaved and non-bereaved couples. For bereaved women, touch also contributed to next day's intimacy. We also showed that couples reported higher intimacy if both partners had higher vs. lower affectionate touch. Our findings highlight bereaved and non-bereaved couples' similarity regarding the relational gains of affectionate touch and the promising function of affectionate touch in coping with loss.
... Neuroimaging studies have shown that total brain volumes and gray and white matter volumes are lower in bereaved individuals than in non-bereaved individuals. This may affect their functioning, as it is more difficult to maintain attention and focus on cognitive tasks when they have repeated intrusive memories and thoughts of loss (15,16). ...
... Participants indicated their use of coping strategies on a 4-point Likert scale ranging from 1 (I did not do this at all) to 4 (I did this a lot). Items 2, 7, 10, 12, 14, 17, 23 and 25 were summed to score PCC, while items 5,9,13,15,18,20,21,22,24,26,27 and 28 were categorised under ECC. The sum of the item scores was divided by the number of items to determine the mean score of each coping form, with a higher mean score indicating greater use of each coping. ...
Article
Background: Complicated grief is characterised by persistent low mood, intense distress and cognitive impairment. This study aimed to explore coping strategies (i.e. emotion-, problem- and meaning-centred) used by bereaved individuals facing complicated grief and how these strategies may predict psychological and cognitive outcomes. Methods: In a cross-sectional study, 20 bereaved individuals (5 males, 15 females) that aged 27 years old–65 years old (mean = 42.25, standard deviation [SD] = 9.30) were recruited following the loss of a loved one due to physical illness. Participants were screened for complicated grief and subsequently completed self-report assessments of coping strategies and depressive symptoms using Brief Grief Questionnaire (BGQ), Brief Coping Orientation to Problems Experienced (COPE) Questionnaire, Meaning-Centered Coping Scale (MCCS) and Patient Health Questionnaire-9 Items (PHQ-9). Following that, participants underwent a neurocognitive assessment of working memory using the 2-Back task. Results: Caregivers with complicated grief suffered from moderate severity of depressive symptoms (mean = 17.45, SD = 4.43) as they were coping with the losses. Furthermore, the f indings showed that MCC significantly predicted lower levels of depressive symptoms (b = −0.50, t (16) = −2.25, P = 0.04). However, coping strategies did not significantly predict working memory performance. Conclusion: These findings highlight the potential benefits of MCC in alleviating depressive symptoms in bereaved individuals and underscore its contribution to the development of grief interventions. Grief therapists can emphasise this coping strategy to promote healing and resilience in patients in the grief work.
... This echoes previous findings that suggest deficiencies in municipal support for bereaved families, 11 even though losing a child is recognized as one of the most distressing events one can experience, 43 often accompanied by serious grief reactions that impair functioning over time. 44,45 These findings emphasize the necessity for clearer guidelines in this area. ...
Article
Full-text available
Background Municipality-based pediatric palliative care (PPC) is recommended to promote the quality of life for the child and family by enabling them to stay at home as much as possible. However, municipality-based PPC presents complex challenges and places significant demands on healthcare professionals. Yet, it remains an underexplored field. Objectives Semi-structured and individual interviews with 16 healthcare professionals with experiences from PPC were conducted and transcribed. Data was analyzed using systematic text condensation. Results To increase the knowledge base and understanding of important factors for municipality-based PPC from healthcare professionals’ perspective. Design A qualitative method with an interpretive descriptive design was applied. Methods The bridging theme “Establishing a sense of security and predictability for the family and healthcare professionals” emerged from the analysis. This was elaborated by three main themes: (1) “A comprehensive approach to the family,” (2) “Establishing and maintaining a dedicated, multidisciplinary pediatric palliative team in the municipality,” and (3) “Collaboration and communication between involved services.” Each main theme was further elaborated by subthemes. Conclusion The importance of establishing security and predictability in municipality-based PPC was emphasized. To achieve this, holistic support for the entire family and ensuring sufficient competence in the municipality seem crucial. Establishing municipality PPC teams is proposed, and the need for early referral, routines for collaboration, and a designated coordinator appear to be key systemic factors. Registration and reporting guidelines The study is registered in the institutional system for research project (RETTE ID: R2082), and the study is reported according to the COREQ checklist for qualitative studies.
... Among mothers, the risk of being hospitalized for a psychiatric disorder was constantly elevated for approximately five years after their child's death. This finding is supported by Pohlkamp, et al. (2019), who studied the prolonged effects of bereaved parents who lost their child to cancer. Researchers found that cancer-bereaved mothers and fathers are vulnerable to prolonged grief, depression, posttraumatic stress symptoms, and sleep disturbances up to five years after the death of their child. ...
... After death of their child from cancer, parents endure prolonged grief and are vulnerable to negative mental health outcomes and post-traumatic symptoms. (Ljungman et al., 2015;Pohlkamp et al., 2019), often persisting beyond five years (Kreicbergs et al., 2004;McCarthy et al., 2010). The psychosocial impacts of losing a child to cancer, including duration, severity, and factors associated with negative outcomes, remain insufficiently explored. ...
Article
Parents experience lasting psychological distress after a child's death from cancer. Limited evidence exists regarding difficult life events, duration of psychosocial impacts, and associated risk factors among bereaved parents. Alex's Lemonade Stand Foundation surveyed self-selected, bereaved parents regarding difficult life events and psychosocial wellbeing (life satisfaction, unanswered questions, and missing the care team) through a public, cross-sectional survey. 176 bereaved parents (89% mothers) participated a median of 7 y after their child's death. The most difficult events were family vacations (80%), their child's birthday (80%), and anniversary of their child's death (76%). Only the latter did not improve with time. Greater life satisfaction was associated with male sex (ARR = 1.2, 95% CI:1.1-1.4) and being married/partnered (ARR = 1.2, 95% CI = 1.0-1.3). Having unanswered questions and missing the child's team were associated with annual income <$50,000 (ARR = 1.2, 95% CI:1.1-1.2; ARR = 1.2, 95% CI:1.0-1.3, respectively). Pediatric oncology programs need robust bereavement programs that include prolonged contact with families.
Article
Full-text available
A minority of bereaved adults experiences prolonged grief disorder, depression, and/or posttraumatic stress disorder, with heightened risks observed among bereaved parents. Cognitive-behavioural therapies, both face-to-face and online, have demonstrated efficacy in treating post-loss mental health problems. Mobile phone applications potentially offer an efficient and cost-effective way to deliver self-help to bereaved adults, yet controlled effectiveness studies are lacking. Therefore, we examined the short-term efficacy of the My Grief app, based on cognitive-behavioural therapy, in 248 bereaved parents, in a randomised controlled trial (Clinicaltrials. gov, identifier: NCT04552717). Participants were randomly allocated to access to the My Grief app (n = 126) or a waitlist (n = 122). At baseline and post-assessment, symptoms of prolonged grief, posttraumatic stress, and depression, negative grief cognitions, rumination, and avoidance were assessed. Reductions in prolonged grief and posttraumatic stress symptoms and negative cognitions in the intervention group were larger than in the control group, albeit with small effect sizes. Fifteen app users reported negative experiences with the app; for example, some mentioned that it elicited painful memories and emotions related to their loss. My Grief appears to achieve modest improvements in mental health in bereaved parents. Given that it is accessible and low-cost, it is an important addition to the suite of prolonged grief interventions.
Article
This study aims to validate the Korean version of the Revised Prolonged Grief Disorder scale (PG-13-R-K) by exploring the psychometric properties of the revised Prolonged Grief Disorder scale in bereaved South Korean adults. A total of 694 bereaved individuals who had experienced the loss of a close person for a duration ranging from 12 to 24 months were included in this study and randomly divided into two separate datasets to conduct factor analyses. The results of both EFA and CFA revealed a single-factor structure for the PG-13-R-K. Moreover, the results of reliability and validity tests showed adequate internal consistency and concurrent validity. These findings suggest that the PG-13-R-K is a reliable and valid tool for assessing PGD symptoms among bereaved Korean adults. The limitations and implications of this study are thoroughly examined and discussed.
Article
Full-text available
Research demonstrates that severe forms of grief and grief-related pathology exist in the general population. Less attention, however, has been paid to the grief of parents following the death of a young, dependent child. In this review, we summarize a search of Pubmed, PsycINFO and Web of Science from 1995 to 2017, using the terms ‘parental complicated grief’, ‘parental traumatic grief’, and ‘parent Prolonged Grief Disorder’, specifically addressing parental grief and identified risk factors for complicated or prolonged grief. Forty-two studies met criteria and indicate a significant burden of complicated or prolonged grief in parents of children dying from virtually any cause. It appears that the empiric literature is undermined by great variability, including the composition of samples, the causes of death studied, the psychometric measures used, and post-loss intervals. We conclude that the uniform severity of grief experiences following the death of a young child is potentially a distinct subtype of grief, deserving of attention in its own right in future research and diagnostic formulations.
Article
Full-text available
This study aimed to validate the Swedish version of the Prolonged Grief Disorder-13 tool (PG-13) by examining its psychometric properties, including factor structure, discriminant and concurrent validity. The PG-13 was assessed in a sample of Swedish parents who had lost a child to cancer 1-5 years previously. The sample included 225 parents (133 mothers and 92 fathers) with a mean age of 46.02 years (SD = 8.15) and 16.0% met the criteria for Prolonged Grief Disorder (PGD). A principal component analysis was performed, and the results supported a one-factor structure of the PG-13. The PG-13 was shown to have high internal consistency and intelligible associations with concurrent psychological symptoms and grief rumination as well as with known risk factors for PGD. These results indicate satisfactory psychometric properties of the instrument, thus supporting the use of the PG-13 as a valid measure of PGD.
Article
Full-text available
After a child's death to cancer, families commonly want continued connection with the healthcare team that cared for their child, yet bereavement follow-up is often sporadic. A comprehensive literature search found that many bereaved parents experience poor psychological outcomes during bereavement and that parents want follow-up and benefit from continued connection with their child's healthcare providers. Evidence suggests that the standard of care should consist of at least one meaningful contact between the healthcare team and bereaved parents to identify those at risk for negative psychosocial sequelae and to provide resources for bereavement support. Pediatr Blood Cancer © 2015 Wiley Periodicals, Inc.
Article
Objective The death of a child has been associated with adverse parental outcomes, including a heightened risk for psychological distress, poor physical health, loss of employment income, and diminished psychosocial well-being. Psychosocial standards of care for centers serving pediatric cancer patients recommend maintaining at least one meaningful contact between the healthcare team and bereaved parents to identify families at risk for negative psychosocial sequelae and to provide resources for bereavement support. This study assessed how this standard is being implemented in current healthcare and palliative care practices, as well as barriers to its implementation. Method Experts in the field of pediatric palliative care and oncology created a survey that was posted with review and permission on four listservs. The survey inquired about pediatric palliative and bereavement program characteristics, as well as challenges and barriers to implementation of the published standards of care. Result The majority of participants ( N = 100) self-reported as palliative care physicians (51%), followed by oncologists (19%). Although 59% of staff reported that their center often or always deliver bereavement care after a child's death, approximately two-thirds reported having no policy for the oncology team to routinely assess bereavement needs. Inconsistent types of bereavement services and varying duration of care was common. Twenty-eight percent of participants indicated that their center has no systematic contact with bereaved families after the child's death. Among centers where contacts are made, the person who calls the bereaved parent is unknown to the family in 30% of cases. Few centers (5%) use a bereavement screening or assessment tool. Significance of results Lack of routine assessment of bereavement needs, inconsistent duration of bereavement care, and tremendous variability in bereavement services suggest more work is needed to promote standardized, policy-driven bereavement care. The data shed light on multiple areas and opportunities for improvement.
Article
Objective: Complicated grief (CG) is considered a distinctive symptom from other bereavement-related mental impairments such as major depressive disorder (MDD). CG and MDD may appear independently or co-morbidly; however, the factors associated with each situation are unclear. Methods: We conducted a nationwide cross-sectional questionnaire survey involving bereaved family members of cancer patients in 175 institutions. The following items were included in the questionnaires to assess the prevalence of CG and MDD, and the following associated factors: demographic characteristics; bereaved family depression (Patient Health Questionnaire-9) and grief status (Brief Grief Questionnaire); structure and process of care (Care Evaluation Scale); overall care satisfaction; and achievement of a good death (Good Death Inventory). Results: A total of 9,123 questionnaires were returned. The prevalence of CG and MDD was 14% and 17%, respectively. Additionally, 58% of the possible CG participants showed co-morbid symptoms. Common factors that showed significant association with either independent or co-morbid symptoms of CG and MDD were pre=existing mental impairment; belief in the survival of the soul after physical death; unpreparedness for the death; poor physical or psychological health status; and the belief that the deceased felt themselves as a burden to others (all p <0.05). The duration of bereavement did not remain significant after multivariate analysis. Conclusions: While there were many common factors associated with both CG and MDD independently, few participants exhibited associations to both CG and MDD. Therefore, CG and MDD can be considered as distinctive symptoms, which frequently appear co-morbidly.
Article
Purpose: To examine bereaved parents' physical, mental, and social health during the first 6 months after their child's (<12 years) death from a life-threatening illness. Background and significance: Bereaved parents have higher mortality and morbidity rates when compared to nonbereaved parents. Acute illnesses, hospitalizations, and medication changes are highest in the first 6 months. An understanding of bereaved parents' health risk indicators can help inform development of health promotion and disease prevention measures. Methods and Analysis: A prospective descriptive study examined 8 parent dyads. Parents completed health surveys (Patient-Reported Outcomes Measurement Information System-global, social, and sleep; Brief Symptom Inventory [BSI] 18), which are used to assess parents' health at 3 and 6 months after their child's death. Demographic data included a medical history, hospital or emergency department visits, and smoking and alcohol intake. Descriptive statistics were used to compare parents' scores to US general population scores. Findings: Mothers' and fathers' physical, mental, and sleep health scores were typically within 1 to 2 standard deviations of the population norms. However, their social health scores were as low as 3 standard deviations and all parents' scores were below population norms. Four (25%) of the 16 parents had new diagnosis during the first 6 months. Based on the BSI-18, 3 parents had their scores above population cutoffs, which warranted a need for further clinical evaluation. Conclusions: Health data highlight the "at-risk" health status of bereaved parents. Further validation of these data is required to support the development of health promotion and disease prevention programs.
Article
Background: Prolonged grief disorder (PGD) is a bereavement-specific syndrome expected to be included in the forthcoming ICD-11. Defining the prevalence of PGD will have important nosological, clinical, and therapeutic implications. The present systematic review and meta-analysis aimed to estimate the prevalence rate of PGD in the adult bereaved population, identify possible moderators, and explore methodological quality of studies in this area. Methods: A systematic literature search was conducted in PubMed, PsycINFO, Embase, Web of Science, and CINAHL. Studies with non-psychiatric, adult populations exposed to non-violent bereavement were included and subjected to meta-analytic evaluation. Results: Fourteen eligible studies were identified. Meta-analysis revealed a pooled prevalence of PGD of 9.8% (95% CI 6.8-14.0). Moderation analyses showed higher mean age to be associated with higher prevalence of PGD. Study quality was characterized by low risk of internal validity bias but high risk of external validity bias. Limitations: The available studies are methodologically heterogeneous. Among the limitations are that only half the studies used registry-based probability sampling methods (50.0%) and few studies analyzed non-responders (14.3%). Conclusions: This first systematic review and meta-analysis of the prevalence of PGD suggests that one out of ten bereaved adults is at risk for PGD. To allocate economic and professional resources most effectively, this result underscores the importance of identifying and offer treatment to those bereaved individuals in greatest need. Due to heterogeneity and limited representativeness, the findings should be interpreted cautiously and additional high-quality epidemiological research using population-based designs is needed.
Article
Parents who have lost an infant prior to, during, or following birth often interpret the event as highly traumatic. The present systematic review included 46 articles based on 31 different studies of posttraumatic stress disorder (PTSD) in parents bereaved by infant death. The PTSD prevalence in mothers differed widely across studies with estimated rates at 0.6–39%. PTSD in fathers following infant loss has been less extensively studied but PTSD levels were generally much lower than in mothers with reported prevalence rates at 0–15.6% across studies. PTSD symptoms were not found to differ much depending on whether the death occurred prior to, during, or following birth and nor was gestational age consistently associated with PTSD severity. A number of risk and protective factors have been found to be associated with PTSD severity. Relevant focus areas for future research are presented along with considerations for future pregnancies and children. The suffering associated with PTSD following infant loss is overwhelming because of the rates at which such losses occur around the world. For this reason, it is problematic that not all types of infant loss resulting in sufficient symptoms of re-experiencing, avoidance, and arousal can elicit a DSM-5 PTSD diagnosis.
Article
Although grief is a normal response to loss, the death of a child is believed to be one of the most difficult losses a person can endure, and bereaved parents are considered to be an “at-risk” group. Even though most deaths of children in the United States occur in hospitals, bereavement care provided by hospitals is highly variable, and little attention has been directed to how hospitals can best support grieving parents. In this article, we describe the development of a hospital-wide bereavement program at Boston Children's Hospital, where we conceptualize bereavement care as a preventive model of care. We identify the primary constructs of the program as education, guidance, and support and outline a template for use by other hospitals. We recommend that all pediatric hospitals implement basic, coordinated bereavement programs as the standard of care to ensure that all families receive bereavement care after the death of a patient.