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

  • Marie Cederschiöld University College
  • Marie Cederschiöld University

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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.
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Bereaved mothers' and fathers' prolonged grief and
psychological health 1 to 5 years after lossA nationwide study
Lilian Pohlkamp
|Ulrika Kreicbergs
|Josefin Sveen
Department of Health Care Sciences,
Palliative Research Centre, Ersta Sköndal
Bräcke University College, Stockholm, Sweden
Department of Women's and Children's
Health, Karolinska Institutet, Stockholm,
Department of Neuroscience, Psychiatry,
Uppsala University, Uppsala, Sweden
Lilian Pohlkamp, Department of Health Care
Sciences, Palliative Research Centre, Ersta
Sköndal Bräcke University College, Stockholm,
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
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.
childhood cancer, depression, fathers, mothers, insomnia, pediatric oncology, PGD, posttraumatic
stress, prolonged grief
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.
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.
A recent metaanalysis reported a pooled
PGD prevalence rate of 10% in nonviolent adult bereavement,
PGD prevalence rates tend to be higher in samples of bereaved
Common psychological symptoms associated with bereavement
are depression, posttraumatic stress, and insomnia.
prolonged grief, depression, and posttraumatic stress are strongly
related, they are distinguishable concepts.
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, 1
distinctiveness includes a longitudinal study on bereaved couples,
showing that grief was predicted by bereavementspecific factors,
while depression was predicted by individual factors.
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.
A recent longitudinal study showed elevated levels of posttraumatic
stress symptoms in parents bereaved owing to a child's cancer.
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.
Another common health problem associated with bereavement is
sleep disturbance.
A study
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,
and posttraumatic stress.
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.
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,
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.
2.1 |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
= 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
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)
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.
The total score
ranges from 11 to 55, with a higher score indicating more symptoms
of PGD, cutoff
equal to or more than 35. Cronbach's αwas 0.89.
The MontgomeryÅsberg Depression Rating Scale (MADRS)
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
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)
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)
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
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.
3.1 |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%)
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%)
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
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
= (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
The twoway ANOVA revealed no statistically significant main effect
of years since loss on symptoms of PGD, F
= 0.74, .57. Mothers
had significantly higher PGD symptom levels than fathers, F
6.22, .01. However, there was no interaction effect between years
since loss and gender on PGD, F
= 0.98, .42.
We found no significant main effect of years since loss on symp-
toms of depression, F
= 0.27, .90. There was, however, a significant
effect for gender on symptoms of depression, F
= 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
= 1.17, .32.
No significant difference was observed in posttraumatic stress
symptoms across years since loss, F
= 0.49, .75. Mothers scored sig-
nificantly higher on posttraumatic stress symptoms than fathers, F
5.24, .02. There was no significant interaction between years since
loss and gender on posttraumatic stress symptoms F
= 1.60, .17.
In symptoms of insomnia, we saw no significant effect of years
since loss, F
= 1.12, .35 and no difference between genders, F
1.92, .17. There was no significant interaction between years since
loss and gender on insomnia F
= 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.
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)
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
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.
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,
which is consistent with research in other populations
showing that long lasting sleep disturbance is related to poor psycho-
logical and physical health.
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,
more symptoms of depres-
and more posttraumatic stress symptoms
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.
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.
How individuals adjust to bereavement is predicted by various fac-
but the grief experienced by parents is generally very severe,
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.
The results of this study
indicate that bereaved parents may need access to support up to 5
years postloss.
Lichtenthal et al
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.
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
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
adjustment and the healing of the parents following the loss of their
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.
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.
None declared.
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.
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.
Lilian Pohlkamp
Josefin Sveen
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How to cite this article: Pohlkamp L, Kreicbergs U, Sveen J.
Bereaved mothers' and fathers' prolonged grief and psycholog-
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... 10 The perceived quality of PPC affects parental well-being after the child's death, and bereaved parents and siblings are at risk of complicated grief trajectories, as well as posttraumatic stress disorder PTSD. 11,12 One example is that insufficient symptom management has been linked to lower quality of life in paediatric patients and long-term parental grief and distress. 13,14 The existing research indicates that symptom management, emotional and psychological aspects of care and efficient care coordination are the most important factors for successful homebased PPC. ...
... Several studies underline the importance of both high-quality PPC and bereavement support, as families who lose a child are at risk of developing complex grief reactions. 12 Furthermore, low-quality PPC impairs parents' bereavement outcomes, 11,14 and lack of psychosocial support in grief increases the likelihood of complicated grief reactions. 32 Based on their experiences, the parents outlined several implications for clinical practice. ...
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Background Having a child with a life-limiting illness is a situation that is relatively rare and represents a multidimensional burden on the family. Paediatric palliative care (PPC) aims to maintain the quality of life for the ill child and the family. Traditionally, most PPC has been provided at a specialist healthcare level, but research indicates that most families wish to spend as much time at home as possible. However, we have limited knowledge of PPC in community healthcare, especially from the parent’s perspective. This knowledge is important to provide optimal home-based PPC. Objectives To explore parents’ experiences of PPC within the community healthcare system. Design Qualitative study with an interpretive descriptive design. Methods In all, 11 parents of children with different life-limiting illnesses were interviewed after the child’s death using a semi-structured interview guideline. Data were analysed using systematic text condensation. Consolidated criteria for reporting qualitative research (QOREQ) was followed. Results The parents’ experiences were captured in five main themes: (i) ‘Interaction with hospital and community services’, (ii) ‘Parents did not always get the help they needed’, (iii) ‘The child’s needs became increasingly complex’, (iv) ‘When the end came’ and (v) ‘The parents asked for an ordinary life in an unordinary situation’. Each main theme was further elaborated by two subthemes. Conclusion Overall, the parents experienced PPC in the community as limited and fragile, and as lacking flexibility, coordination and professional competence related to the children’s complex needs. There appears to be potential for improvement in PPC through improved care coordination between the hospital and the community healthcare services, involving the community healthcare system at an early timepoint in the illness trajectory, including a family focus, and providing accessibility, flexibility and care coordination of community services. Registration and reporting guidelines The study is registered in the institutional system for research project (RETTE; ID number F2082).
... Bereaved parents have increased psychiatric and medical admissions (2) and increased mortality compared to parents who did not lose a child (3,4). The loss of a child has been associated with elevated symptoms of depression, anxiety (5), and post-traumatic stress, as well as severe, persistent, and disabling grief, termed prolonged grief (6,7). ...
... Previous research found that mothers reported more severe prolonged grief symptoms than fathers 1-5 years post-loss (6). ...
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Mobile health (mHealth) apps have been shown to be useful to monitor and reduce mental health problems across a variety of stress-related and affective disorders, yet research on the value of apps for prolonged grief is scarce. Therefore, the main aim of this study was to elucidate bereaved parents' experiences of using the self-help app My Grief with a focus on helpfulness, satisfaction, and usability. A mixed-method design was used, analyzing quantitative and qualitative data from the 3-month post-assessment of the intervention group (n=67) within a randomized controlled trial. The sample consisted of 88% women, with a mean age of 47 years, who predominantly lost their child to cancer (41%), on average 4.8 years ago. Participating parents indicated that the My Grief app helped them increase their knowledge about prolonged grief and track their grief over time. The app was experienced as easy to navigate in and around half of the parents used the app more than one day a week. Almost all parents were satisfied with the app and would recommend it to other parents in similar situations. The findings add to the knowledge base justifying mHealth within support systems for bereaved adults. Abbreviations App-a smartphone application CBT-cognitive behavior therapy mHealth-mobile health PGD-prolonged grief disorder PTSD-posttraumatic stress disorder
... Estimated prevalence of probable PGD ranged from 26 to 32 percent, dependent on the diagnostic system and chosen diagnostic algorithm. This aligns with reviews showing that child loss is a potential risk factor for severe and persistent grief (e.g., Burke & Neimeyer, 2013) as well as with prior research in a national Swedish sample showing that about a third of bereaved parents develops such grief responses following the death of a child (Pohlkamp et al., 2019). However, it should be noted that the present sample was pre-selected on experiencing elevated grief levels for participation in a trial on a grief app and, as such, these comparisons should be made with caution. ...
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The International Classification of Diseases eleventh edition (ICD-11) and the Diagnostic and Statistical Manual of Mental Disorders fifth edition, text revision (DSM-5-TR) now include prolonged grief disorder (PGD). Since criteria for PGD in both classification systems differ from prior proposed grief disorders and each other, the validation of a single instrument to screen for prolonged grief (PG) symptoms of both new diagnoses is critical for bereavement research and care. Therefore, we evaluated the psychometric properties of the Swedish version of the Traumatic Grief Inventory Self-Report Plus (TGI-SR+). Two-hundred and forty-eight bereaved parents completed questions about sociodemographic and loss-related variables, the TGI-SR+, and symptom measures of posttraumatic stress (PTS), depressionand an older measure of PG symptoms, the Prolonged Grief scale 13 (PG-13). Confirmatory factor analyses showed that a one-factor factor model best fit DSM-5-TR and ICD-11 PG symptoms and the analyses of the internal consistency and inter-item correlations showed that these symptoms could be reliably assessed. In support of convergent validity, DSM-5-TR and ICD-11 PG symptoms correlated with symptoms of PTS, depression and PG assessed with the PG-13. In support of known-groups validity, DSM-5-TR and ICD-11 PG symptoms were higher among lower educated (vs. higher educated) participants and related negatively to time since loss. ROC analyses showed optimal cut-off score of ≥ 71 and ≥ 72 to determine probable caseness for DSM-5-TR and ICD-11 PGD, respectively. Results support the reliability and validity of the Swedish TGI-SR+ as a screening instrument for PG in research and bereavement care.
... Based on the findings, we suggest improvements in the services. Not only did most participants report a need for professional help after the death, but the mean scores of prolonged grief symptoms were high, in fact higher than in a study of Swedish parents who had lost an underage child within the last five years, comparing the same time since bereavement (Pohlkamp et al., 2019). Our sample is made up of heterogenous relations to the deceased, and as Titlestad and Dyregrov (2022) shows, there are group differences in mean scores in this sample depending on the relation. ...
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Background and aims: Individuals bereaved after sudden and unexpected deaths can benefit from professional help to cope after the loss, and the bereaved call for proactive, early and flexible help from professional services. Most drug-related deaths (DRDs) happen suddenly and unexpectedly. DRDs are a significant public health issue, yet few studies have examined DRD-bereaved people’s needs and experiences with professional help. This article investigates the needs for help and received help reported by DRD-bereaved family members and friends, and suggests improvements in services based on the findings. Data and method: A heterogeneous convenience sample of DRD-bereaved family members and close friends (n = 255) were recruited for a survey from February to December 2018. Descriptive analyses were conducted for experiences with professional help, chi-square analyses to find predictors for help needs and received help, and logistic regression analysis to find predictors for satisfaction with the help provided. Results: Most DRD-bereaved individuals reported a need for professional help after the death regardless of family relation to the deceased, and about half of the participants received help. Nearly half of them were satisfied with the help. Our results indicated higher satisfaction with help among older bereaved, and the participants who received help from a crisis team or psychotherapist. The latter was particularly stated for younger participants. Few participants with children in the family reported that the children had received help, and less than one-third were satisfied with this help. Conclusion: The study shows that younger age groups and children need particular recognition, and a family perspective from services is essential. When assessing the help needs of the DRD-bereaved, relations of both psychological and biological closeness should be recognised. Help efforts should be tailored according to established knowledge of the provided help that bereaved populations deem effective.
... XX, No. XX of depressive symptoms (Pinquart, 2019) and health-related parenting stress (Cohn et al., 2020;Pinquart, 2018). Caring for children may expose caregivers to physical and psychosocial burdens, which could erode their own health and well-being as they age (Namkung et al., 2018;Pohlkamp et al., 2019). Additionally, as caregivers themselves age, they may become increasingly concerned about their ability to continue providing care for their children (Mengel et al., 1996). ...
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Objectives: Theories suggest that self-perceptions of aging (SPA) reflect structural and cultural ageism together with an individual's personal life experiences. We examine the impact of an individual's history of informal caregiving on their SPA. Methods: Using data from the Health and Retirement Study (HRS, N = 8,372, age range 50 - 102 years), we investigated caregiving history as a determinant of later-life SPA. HRS participants provided reports of up to five episodes of caregiving, the life course timing of each episode (start / end year), and their relationship with the care recipients. SPA was measured by the HRS Attitudes toward Own Aging Scale. We conducted linear regressions to examine associations between specific caregiving histories and later-life SPA. Models included controls for current sociodemographic and health status. Results: Individuals who were ever a caregiver reported more negative SPA than non-caregivers. Variations in the impact of histories of caregiving were also revealed. Specifically, compared to people who had cared for adult(s) only, HRS participants who cared for both a child with special needs and an adult reported more negative SPA later in life. Discussion: The study provides insight into potential life course precursors of SPA and highlights the importance of conceptualizing caregiving history as a complex life experience that might impact an individual's SPA later in life.
... Chen, 2022;van Schaik & Wojtkowiak, 2023). The death of a child is one of the most stressful events experienced across cultures (Miller & Rahe, 1997), often resulting in prolonged and intense grief reactions that affect daily functioning (Dutta et al., 2019;Pohlkamp et al., 2019;Schorr et al., 2016;Wilcox et al., 2015). Parents who lose a child during the perinatal period often struggle to come to terms with their grief or to provide an identity for their child (Cacciatore, 2010;Malacrida, 1999;Pollock et al., 2020). ...
... A broad lit er a ture has exam ined the asso ci a tions between child hood illnesses and par ents' men tal health (Bruce 2006;Kazak et al. 1998;Pinquart 2019). Recent stud ies from the Nor dic countries have also dem on strated that a child's ill ness exerts a psycho log i cal toll on the par ents (e.g., Adhvaryu et al. 2023;Breivik and Costa-Ramón 2022;Eriksen et al. 2021), with espe cially acute men tal health symp toms when the child dies (Pohlkamp et al. 2019). Consequently, the men tal health effect of a child's can cer could explain part of the neg a tive labor mar ket impact on the par ents. ...
This article employs a couple-level framework to examine how a child's severe illness affects within-family gender inequality. We study parental labor market responses to a child's cancer diagnosis by exploiting an event-study methodology and rich individual-level administrative data on hospitalizations and labor market variables for the total population in Finland. We find that a child's cancer negatively affects the mother's and the father's labor income. The effect is considerably larger for women, increasing gender inequality beyond the well-documented motherhood penalty. We test three potential moderators explaining the more negative outcomes among mothers: (1) breadwinner status, (2) adherence to traditional gender roles and conservative values, and (3) the child's care needs. We find that mothers who are the main breadwinner experience a smaller reduction in their household income contribution than other mothers. Additionally, working in a gender-typical industry and a child's augmented care needs reinforce mothers' gendered responses. These findings contribute to the literature by providing new insights into gender roles when a child falls ill and demonstrating the effects of child health on gender inequality in two-parent households.
Background: The impact of a child's cancer diagnosis on subsequent maternal physical health is unclear. Methods: We identified all Ontario children diagnosed less than 18 years with cancer between 1992 and 2017. Linkage to administrative databases identified mothers who were matched to population controls. We identified physical health conditions, acute healthcare use, and preventive healthcare use through validated algorithms using healthcare data, and compared them between exposed (child with cancer) and unexposed mothers. Predictors of health outcomes were assessed among exposed mothers. Results: We identified 5311 exposed mothers and 19,516 matched unexposed mothers. For exposed mothers, median age at last follow-up was 48 years, (interquartile range: 42-53). Exposed mothers had an increased risk of cancer (hazard ratio [HR] 1.2, 95% confidence interval [95% CI]: 1.0-1.5, p = .03), but not of any other adverse physical outcomes or of increased acute healthcare use. Exposed mothers were more likely to receive influenza vaccinations (odds ratio 1.4, 95% CI: 1.3-1.5, p < .0001), and underwent cancer screening at the same rate as unexposed mothers. Among exposed mothers, bereavement was associated with a subsequent increased risk of cancer (HR 1.7, 95% CI: 1.2-2.5, p = .004) and death (HR 2.2, 95% CI: 1.2-4.1, p = .01). Conclusion: Mothers of children with cancer are at increased risk of developing cancer, but not of other adverse physical health outcomes, and were equally or more likely to be adherent to preventive healthcare practices. Bereaved mothers were at increased risk of subsequent cancer and death. Interventions targeting specific subpopulations of mothers of children with cancer or focused on screening for specific cancers may be warranted.
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Perinatal loss is a devastating event for any mother. What is often overlooked is a mothers continued ability to lactate following the death of her child. Donor breast milk is a commodity highly sought after given its value for feeding sick babies resident in Neonatal Intensive Care Units. This study aimed to explore the lived experience of mothers who have expressed and donated their breast milk following the loss of their infant. Seven bereaved mothers who donated milk to the Human Milk Bank in Northern Ireland were recruited. These women took part in semistructured interviews, which explored their experiences of perinatal loss and the role that expression/donation played for them in their grief. Their accounts were analysed using a qualitative interpretative phenomenological analysis (IPA) method. After transcription and analysis, three superordinate themes emerged; (1) fulfilling the mother role; (2) the power of being able to 'Do'; (3) making good from the bad. The stories of these women reflect the independent and individual nature of grief. Each mother gained a great deal of comfort in having the ability to express milk. For some this created a physical connection to their child, for others, it created time alone to process what had happened and for all, it created a sense of autonomy and ownership in what was otherwise a very turbulent time in their lives.
De dood van een kind is een van de meest intense ervaringen van verlies. Bij de dood van een kind speelt niet alleen het rouwen van de ene ouder, maar voelt deze ook permanent het verdriet van de ander. Een levenloos geboren kind, een miskraam, ongewenste kinderloosheid – het zijn allemaal voorbeelden van ingrijpende gebeurtenissen in het leven van vrouwen en mannen. Ook het afscheid moeten nemen van een partner leidt tot hevige pijn. Nederland kent twee keer zo veel weduwen als weduwnaars, waarbij vrouwen meer dan mannen op jonge leeftijd geconfronteerd worden met de dood van hun partner. Rouwen betekent een manier vinden om met een groot verlies om te gaan. Die manier hangt samen met de leefomstandigheden en levensloop van mensen. De context en voorgeschiedenis zijn voor vrouwen anders dan voor mannen. Dit hoofdstuk beschrijft hoe rouw verloopt en hoe vrouwen en mannen omgaan met verlies en rouw.
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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.
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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.
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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.
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.
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.
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.
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.
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.
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.