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Linda Dowdney a Sutton Hospital, Sutton, Surrey
SM5 2NF, b Department of Child Psychology, Sutton Hospital, c Kingston Hospital, Kingston, Surrey
KT2 7QB, d Medical Research Council Child Psychiatry Unit, Institute of
Psychiatry, De Crespigny Park, London SE5 8AF, e Behavioural Sciences
Unit, Institute of Child Health, London WC1N 1EH
Correspondence to: L Dowdney,
Department of Psychology, University of Surrey, Guildford, Surrey GU2
5XH L.Dowdney{at}surrey.ac.uk
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Abstract |
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Objectives:
To identify whether psychiatric
disturbance in parentally bereaved children and surviving parents is
related to service provision.
Design:
Prospective case-control study.
Setting:
Two adjacent outer London health authorities.
Participants:
45 bereaved families with children aged
2 to 16 years.
Main outcome measures:
Psychological disturbance in
parentally bereaved children and surviving parents, and statistical
associations between sample characteristics and service provision.
Results:
Parentally bereaved children and surviving parents showed higher than expected levels of psychiatric difficulties. Boys were more affected than girls, and bereaved mothers had more mental health difficulties than bereaved fathers. Levels of psychiatric disturbance in children were higher when parents showed probable psychiatric disorder. Service provision related to the age of the
children and the manner of parental death. Children under 5 years of
age were less likely to be offered services than older children even
though their parents desired it. Children were significantly more
likely to be offered services when the parent had committed suicide or
when the death was expected. Children least likely to receive service
support were those who were not in touch with services before parental death.
Conclusions:
Service provision was not significantly
related to parental wishes or to level of psychiatric disturbance in
parents or children. There is a role for general practitioners and
primary care workers in identifying psychologically distressed
surviving parents whose children may be psychiatrically disturbed, and
referring them to appropriate services.
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Key messages
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Introduction |
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The few empirical studies of parentally bereaved children report increased psychological disturbance, with a wide range of symptoms including anxiety, depression, withdrawal, sleep disturbance, and aggression.1-10 The risk of psychiatric disorders in children is greater when surviving parents have mental health difficulties.4 When impaired parenting results, bereaved children are at risk of psychiatric disturbance in adult life.11
Despite this risk, bereaved children are not routinely offered support services. Mental health professionals disagree about service provision. Although counselling after parental death could be an important preventive mental health measure,12 limited resources, coupled with a lack of specificity in identifying children at greatest risk, militate against service provision in the absence of overt disorder.13 Yet surviving parents, who may themselves be experiencing mental health difficulties, may want support for their children.
Methodological shortcomings in previous research include a lack of
standardised measures or control groups
1 6 8
; the use of
referred samples
1 4
or community samples identified through obituaries or undertakers,
2 5 7 10
a method
that fails to identify up to 30% of bereaved families.3
Our study is novel for two reasons: it is the first British study of
childhood bereavement using a representative community sample, and it
is the first study to ascertain whether surviving parents wanted service support for their children and whether service provision is
related to parental or child mental health. We obtained ethical approval for our study from the ethics committees of the health authorities in which the study families lived.
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Participants and methods |
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Sample
We identified deceased adults aged 18-55 years from the
death records of public health offices for two adjacent health
authorities over an 18 month period. General practitioners were asked
to provide the age and sex of the deceased's children. Cooperation of
general practitioners was exceptionally high. Of the 542 recorded
deaths, 476 were registered with general practitioners. Only four
general practitioners refused access to families. Of the remaining 472 (99%) patients, 94 had children aged 2-18 years. We included all
children (81 families) whose parent had died 3-12 months previously and
who lived with both parents when the death occurred. We excluded
children (two families) not living with the surviving parent, and two
families where one parent had murdered the other. Of the remaining 77 families, 73 were still living in the health authorities concerned. We
traced and contacted 71 families (97%): 45 families (63%)
agreed to be interviewed, and 40 (56%) completed all standardised
questionnaires. The final sample consisted of 32 surviving mothers and
13 surviving fathers. We chose one child at random from each family for
our study, giving 16 boys and 29 girls. Eight children were aged 2-5 years, 15 were aged 5-11 years, and 22 were aged 12-16 years. The
median length of time since parental death was 7 months. The 45 participating families did not differ from non-participants in manner
of death (expected or unexpected), sex of surviving parent, sex of
index child, age of child, or family size (one or more
children).
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Measures
We conducted a semistructured interview in each family's
home, gathering information on the death, familial grieving activities,
and adjustment of the child and family after the death. We also
obtained information on whether parents had desired, sought, or been
offered bereavement support from public or voluntary services for
themselves or their children, and their uptake of bereavement services.
Parental mental health measures
Parental mental health was assessed with the general health
questionnaire. This was scored using the conventional method to
identify adults with probable psychiatric disorder.14
Child mental health measures
Child emotional and behavioural disturbances were measured
with standardised checklists completed by the parents (child behaviour
checklist),
15 16
and, for school aged children, by
teachers (teachers' report form).17 These instruments
measure a broad range of symptoms including behaviour that is
withdrawn, anxious, and depressed (internalising scale), and behaviours
that are disruptive, aggressive, or delinquent (externalising scale). To reflect appropriate expressions of child disturbance for age, separate checklists were used for 2-3 year olds16 and 4-18 year olds.15 All subscales are summed to give a
total problem score. For each scale the normative sample mean T
(standardised) score is 50. For both parent and teacher checklists, T
scores of 67 and above on the internalising and externalising scales
and 60 or more on the total problem scale are expected to be obtained by only 5% of the general population, and indicate problems of probable clinical severity.
Statistics
Not all measurement scales were distributed continuously or
according to an interval scale. Therefore we used non-parametric
statistics. Significance values were two tailed, and
2
significance values were corrected for continuity. When expected cell
values were less than 5, we used the Fisher exact probability test. We
used the Wilcoxon matched pairs signed rank test for analyses of
matched pairs and the logistic regression and the Pearson product
moment correlation when appropriate. Confidence intervals were
calculated for median values with confidence interval analysis.
18 19
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Results |
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Parental mental health
Parental mental health scores ranged from 0 (6 cases) to 21 (2 cases), the median being 8 (interquartile range 3-14). Twenty nine
(64%) parents scored 5 or more, a level indicating probable
psychiatric disorder.14 Twenty one mothers (78%) showed
probable psychiatric disturbance compared with only four fathers (31%)
(P=0.05). Parents with more than one child living at home had
significantly higher scores (P=0.03). No significant associations were
found between parental mental health scores and time since death, age
of the surviving parent, age or sex of the child, or whether the death
was expected or unexpected.
Children's emotional and behavioural problems: parental report
Problem scores reported by parents showed a wide range
(table 1). Median scores were above the population mean for 25 (63%)
children on the internalising scale, 23 (58%) children on the
externalising scale, and 24 (60%) children on total problem scores.
Eleven children (28%) had total problem scores above the 95th centile.
Bereaved boys had significantly higher externalising and total problem
scores than bereaved girls (table 2). Total problem scores were not
significantly influenced by age, ordinal position, sex of the deceased
parent, whether the death was expected or unexpected, length of time
since the death, or the number of children living at home. Parental
mental health scores were significantly correlated with parents'
reports of emotional and behavioural distress in their children on the internalising scale (r=0.55, P=0.001) and total problem scores (r=0.53,
P=0.001) but not on the externalising scale.
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Children's emotional and behavioural problems: teachers' report
Bereaved children had significantly higher internalising
and total problem scores than controls (table 3). Teachers considered
them to be significantly more withdrawn, anxious, depressed,
aggressive, and delinquent and to show more attention and thinking
difficulties. Ten bereaved children had total problem scores above the
95th centile compared with none of the controls (P=0.002).
Parent and teacher agreement
Parents and teachers agreed whether a child was above or
below the 95th centile on their total problem scores in 79% of the
paired sample (
=0.51, P=0.003).
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Service support for bereaved children
Most parents (27/45, 60%) wanted service support for their
children. The only significant influence on this desire was the mental
state of the child, specifically externalising behaviour (above or
below the median: P=0.03) and total problem scores (above or below the
median: P=0.05). Of those parents whose children were probably
psychiatrically disturbed, 82% (9 of 11) would have liked support
compared with 53% (18 of 34) of parents whose children were not
psychiatrically disturbed (P=0.07). Similarly, 90% (9 of 10) of
parents whose children were rated by teachers as probably
psychiatrically disturbed desired support compared with only
55%11 of those not so rated (P=0.06). The manner of parental death did not influence whether surviving parents wanted support for their children (P=0.7), neither did parental mental health
scores when forced into a logistic regression before child total
problem scores (P=0.1).
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Discussion |
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We found high levels of psychological morbidity in a representative sample of parentally bereaved children and the surviving parents 3 to 12 months after the death. Mothers were more disturbed than fathers. Boys were more symptomatic than girls, particularly in acting out or aggressive behaviour. Parents with high levels of psychiatric disturbance reported more symptoms in their child. Independent teacher ratings indicated that bereaved children were significantly more likely than matched controls to show widespread psychological difficulties. Teacher and parental ratings of probable child psychiatric disturbance showed good agreement.
Service provision for bereaved children was unrelated to probable psychiatric disturbance in children or parents or to parental desire for support. Given resource limitations, service provision should be targeted at psychologically disturbed children or psychiatrically disturbed parents wanting parenting support, or both. It was only the child's level of disturbance that significantly influenced parental desire for service support. Yet those most likely to be offered service provision were families in touch with services before the death, particularly services such as hospices with existing child provision. We found no association between the children's age and outcome. None the less, preschool children were less likely than older children to be offered services even though their parents were no less likely to want them. These findings indicate a serious mismatch between service need and provision.
The literature offers little guidance on the duration of childhood grieving. Our clinical experience suggests that where childhood disturbance persists beyond 3 months after death and results in family disturbance or affects performance or relationships at school, primary care practitioners should consider referral to specialist services. Practitioners should also be aware that child disturbance may reflect undetected psychological distress in the surviving parent.
Limitations
Bereaved children are neither easily identifiable nor
accessible. We overcame the first difficulty by searching death
records. Researchers followed ethical guidelines20 and did
not unduly pressurise general practitioners or bereaved patients who
declined to participate. Our response rate of 63% was lower than we
wanted but better than in other community studies
(26%-54%).
6 9
those in care, and those whose parents were murdered
may
mean that we underestimated the full extent of
disturbance.22
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Conclusion |
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Our findings indicate a gap in support for bereaved
families at the primary care level. The supportive role of
paediatricians and their function as gatekeepers for the referral of
bereaved children to specialised services are well
specified.23 We agree with Black24 that
general practitioners and primary care workers are ideally placed to
identify families in need of help, particularly when levels of parental
distress are high and when parents report persistent child disturbance
at home or at school.
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Acknowledgments |
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We thank the families who participated at a very difficult time in their lives. We hope their efforts and the information they provided will result in an improvement in the match between service provision and need. We also thank the general practitioners who cooperated with this study and gave us access to their patients. Their understanding and desire to help was important for the project.
Contributors: LD and RW initiated the research and with BM and DS designed the study and generated primary study hypotheses. LD, RW, BM, MA, and PS developed interview measures. LD supervised data collection, took the primary role in data analysis and interpretation, and took responsibility for writing the paper. RW and BM discussed core ideas and interpretation of findings and, with DS, contributed to the paper. MA and PS conducted piloting of instruments, sensitively interviewed the families, participated in discussion of core ideas, and undertook preliminary analyses. LD will act as guarantor for the paper.
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Footnotes |
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Funding: South Thames Regional Health Authority (PGA 105/D).
Competing interests: None declared.
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References |
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(Accepted 28 April 1999)
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