Department of Psychiatry of Disability, St George's Hospital Medical School, London, UK
Correspondence: Heather Sequeira, Department of Psychiatry of Disability, St George's Hospital Medical School, Cranmer Terrace, London SW17 0RE, UK. Tel: 020 8725 5501; e-mail: heathersequeira{at}onetel.net.uk
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ABSTRACT |
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Aims To critically review the published research in this field.
Method A literature search in peer-reviewed psychiatry, psychology, nursing and social care journals for the years 1974 to 2001 was conducted and 25 studies were reviewed.
Results Several studies suggest that, following sexual abuse, people with learning disabilities may experience a range of psychopathology similar to that experienced by adults and children in the general population. However, because of methodological limitations, these results are not conclusive.
Conclusions Whether people with learning disabilities experience reactions to sexual abuse similar to the general population has yet to be explored by systematic research.
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INTRODUCTION |
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It is tempting to hypothesise that sexual trauma victims both with and without learning disability would share a similar range of behavioural or psychological reactions. It might also be expected that some reactions, mediated by cognitive impairment, would not be found in the general population. These ideas have yet to be explored by systematic research, which could be a useful source of information for clinicians.
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METHOD |
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Search strategies were conducted using variations on the following: LEARNING DISABILIT*, DISABLED PERSON, INTELLECTUAL DISABILIT*, CHILD ABUSE, DEVELOPMENTAL DISABILIT*, SEXUAL ABUSE, RETARDATION, RAPE, MENTAL HANDICAP, *ASSAULT, MENTAL* SUBNORMAL*, PTSD.
Papers were identified that presented original data and directly or indirectly addressed the question, What are the psychological effects of sexual abuse in people with learning disabilities? Papers that did not directly report on the effects of abuse were excluded from this review. However, studies where effects were reported as a secondary consideration (e.g. part of a wider incidence survey) were incorporated in the comprehensive compilation of the literature. Both adult and child studies were included. There were no other inclusion criteria.
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RESULTS |
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The literature review identified 8 retrospective studies of clinical case material or surveys involving over 50 participants, 4 smaller quantitative studies of clinical case material, 11 descriptive reviews of clinical cases or single case studies and 2 studies that employed a qualitative methodology. The most significant of these studies are discussed in the text.
Mansell et al
(1998)
A notable study of the sequelae of sexual abuse is that of Mansell et
al (1998), who reported
the effects of sexual abuse for two clinical samples of sexually abused
children (43 with learning disabilities and 43 without learning disabilities).
The authors did not meet with the children or informants directly but used
notes from counselling sessions and meetings with counsellors to complete a
customised information record. The record included, among other victim and
offender variables, seven broad categories of reported sexual abuse sequelae:
school/academic/work activities; personal relationships; sexuality; bedtime;
hygiene; behavioural/emotional problems; medical/clinical findings. The face
and content validity of this assessment is reported to be adequate. However,
there are no data on reliability or discriminative validity and there was no
use of standardised measures to assess the presence or absence of behavioural
or emotional problems.
Overall, Mansell et al found that clinical symptoms recorded in reports from counselling sessions for children with learning disabilities were similar to those in the non-learning-disability group. Both groups of children exhibited aggressive and dominant behaviours, inappropriate anger, poor self-esteem and nightmares. The authors reported statistically significant differences between the groups, including poor sense of personal safety and little sexual knowledge among children with learning disabilities. However, they acknowledge that these factors may be more accurately described as risk factors, or reflect deficiencies in education rather than the effects of abuse. The authors also identified several non-significant differences between the groups, including a higher frequency of self-abuse and a higher frequency of withdrawal into fantasy among the children with learning disabilities, and suggested that these might represent different kinds of response to abuse. Unfortunately, there is no clear description of how these phenomena were defined or how they were assessed.
The authors acknowledged a number of limitations in their study, in particular the lack of a control group of non-abused children. Without such a control group the effects of sexual abuse cannot be determined. The presenting problems in the children with learning disabilities might be due to factors associated with the cognitive impairment per se or other life events and not necessarily the experience of sexual abuse. A further limitation was the use of a clinically referred sample of children, who might be expected to be presenting with either behavioural or emotional difficulties. It is therefore possible that the sample was biased towards children with mental health problems and not representative of children who were not referred to treatment.
Mansell et al
(1992)
Earlier studies by the same research team also attempted to address the
question of clinical effects of abuse. Mansell et al
(1992) studied 119 victims of
sexual abuse with learning disabilities. Information was obtained from family
members, service providers and in some cases the victims themselves. The study
focused on whether the sexually abused person experienced any social,
emotional or behavioural injury and the nature and extent of such trauma. It
was reported that 9.8% of the sample with mild and moderate disabilities and
17.7% of those with severe and profound disabilities experienced withdrawal;
19.6% of the group with mild and moderate disabilities and 31.1% with profound
disabilities were reported to show aggressive and/or other behavioural
problems such as inappropriate sexual behaviour. Only 3.9% of respondents with
mild and moderate disabilities reported no social or emotional problems, and
all those with more severe learning disabilities showed difficulties in these
areas. Without a non-abused control group, however, it is difficult to be
certain whether the reported difficulties would have been present regardless
of the abuse.
Sobsey & Mansell
(1994)
In a further paper, Sobsey & Mansell
(1994) reported that 98.5% of
130 sexually abused children with a wide range of disabilities reported
emotional distress, withdrawal or behavioural problems. Specific problems
included tantrums, non-compliance, aggressive acting out or sexually
inappropriate behaviours. Unfortunately, no validity or reliability data are
provided for the measure used; terms such as emotional distress are not
defined and the proportion of the sample presenting with learning disabilities
is not specified. This study, like its predecessor, lacked a non-abused
control group.
Ryan (1994)
A study by Ryan (1994)
examined 310 persons who presented to a consultation service for people with
learning disabilities in Colorado, USA. The average degree of learning
disability in the sample was within the moderate range and half were reported
to be non-verbal. All presented with complicated behaviours. Ryan reported
that of the 310 referrals almost all had suffered significant abuse or trauma.
She indicated that trauma most frequently included sexual abuse by multiple
assailants, but unfortunately does not indicate the numbers who had
experienced sexual abuse compared with other sources of trauma. All reports of
trauma were confirmed by outside sources.
Of the 310 referrals, Ryan determined that 51 (16.5%) met the DSM-III-R (American Psychiatric Association, 1987) criteria for post-traumatic stress disorder (PTSD). Although this is an important finding, it must be noted that the sample was drawn from a clinical population and it is unclear whether this is representative of the wider population of people with learning disability who experience trauma. It is possible that this sample was biased towards those people presenting with clinical symptoms.
Ryan reported that persons who are non-verbal typically reported the history and current symptoms through drawing or gestures. The DSM-III-R criteria on which the PTSD diagnosis was made in each case were not reported. This is a crucial omission, because it could be argued that several of the diagnostic criteria for PTSD DSM-III-R require a verbal response.
Firth et al
(2001)
In contrast to Ryan's finding, Firth et al
(2001) found that
post-traumatic symptoms were not common in a sample of victims and
perpetrators of sexual abuse with learning disabilities. From a retrospective
review of 43 cases (21 victims only, and 22 perpetrators of whom 16 were also
victims), only 1 case of PTSD was identified. It is possible that the
difference in the findings between this study and Ryan's is due to the
different natures of the populations studied. For example, Firth et
al examined British children and adolescents across the whole range of
disability, in contrast to Ryan, who reported on adults from the USA (average
age 33 years and average degree of mental retardation moderate). Although both
studies were of in-patient populations, there is insufficient detailed
information provided (e.g. gender, proportion of sample in each ability range)
to draw any firm conclusions on this point.
Beail & Warden
(1995)
The importance of stating the nature of the population studied is
highlighted by Beail & Warden
(1995), who suggest that gender
may affect the response to abuse. The authors reported on 22 cases of people
with learning disabilities who had experienced sexual abuse and who received
psychoanalytic psychotherapy in a clinical psychology service over a 4-year
period. They found that 19 of the 22 cases were male, which is at odds with
other reports of sexual abuse of people with learning disability
(Turk & Brown, 1993;
Sobsey et al, 1997)
and also with the wider literature on sexual abuse, where the majority of
sexual abuse victims are female (Watkins
& Bentovim, 1992).
Beail & Warden noted that the men in the study were referred for behavioural problems or sexualised behaviour that had potential to cause problems for their families or carers. In contrast, two of the three women victims did not present with severely challenging behaviour; the third woman presented with self-injurious behaviour. The authors note that this might suggest that men and women with learning disabilities cope with abusive experiences in different ways.
The study used a questionnaire developed by Dunne & Power (1990). This questionnaire covers the background of the survivor and the perpetrator, the type of abuse, how disclosure occurred, investigations, treatment and the effects of the abuse. The psychological impact of sexual abuse is examined in limited depth by this instrument. The study was limited by retrospective assessment, the absence of psychometric measures and reliance on case notes. Nevertheless, its design was presented in a structured and thorough manner that could be replicated in future work.
Lindsay et al
(2001)
A further study worthy of note is of 46 sexual and 48 non-sexual offenders
by Lindsay et al
(2001). They report that 38%
of the sexual offenders had experienced sexual abuse, compared with 12.7% of
non-sexual offenders. They suggest that sexual abuse is a significant variable
in the history of sexual offenders, but that the cycle of abuse is neither
inevitable nor an adequate explanation of future offending.
Clinical effects
All the studies reviewed above attempted to use a systematic approach to
document the psychological effects of sexual abuse in people with learning
disabilities. Other studies identified in
Table 1 include small-scale or
single case studies or studies where the clinical effect of abuse was not the
primary focus (e.g. Brown et al,
1995). As can be seen from
Table 1, a range of clinical
effects were reported. These include: PTSD and depression
(Davidson et al,
1994); loss of self-esteem, self-destructive tendencies and anger
(Westcott, 1993);
schizophreniform psychosis (Martorana,
1985); multiple personality disorder
(Fairley et al,
1995); and dissociative symptoms, self-harm and alcohol abuse
(Johnson, 2001).
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DISCUSSION |
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Assessment of symptoms using validated measures
The interpretation of existing research is hindered by a lack of clear
descriptions of the symptoms under focus. Therefore, future study should aim
to document symptoms in a systematic and reliable way, preferably using
validated measures. Many tools have been validated for assessing
psychopathology and challenging behaviour in people with learning disabilities
(O'Brien et al,
2001), but no standardised diagnostic instrument is known to exist
that specifically assesses the effects of trauma in this population. It is
important that assessment should cover a wide range of possible disturbances
and not just the post-traumatic symptoms known to occur in the general
population.
Communication difficulties and assessment of psychiatric
symptoms
The major difficulty in research involving people with more-severe learning
disabilities is one of communication. A person may not be able to report on
symptoms according to the respondent measures used with more able clients.
Many researchers have relied on informant measures (completed with parents or
keyworkers) but such reports are inevitably incomplete: informants cannot be
totally aware of the internal subjective experience of a client or of
non-visible autonomic symptoms that could be crucial to making a correct
diagnosis. The diagnostic criteria for psychiatric disorders for use with
adults with learning disability/mental retardation (DC-LD)
(Royal College of Psychiatrists,
2001) are an attempt to address this problem by proposing symptom
clusters to assist the clinician in making a diagnosis. Studies of
self-reports in people with more severe learning disabilities using drawing or
gestures may be more suited to qualitative research methods.
Definitions of sexual abuse and certainty of abuse occurrence
Further study should define the criteria used for sexual abuse. Without
knowing the operational definition of sexual abuse being used, we cannot be
sure what types of experience we are looking at. It is also important to
specify whether unsubstantiated cases of abuse are being included. This is
vital information in the interpretation of any findings and, unfortunately,
the vast majority of the studies reviewed do not report on the certainty of
abuse having occurred. A system for classifying the degree of
certainty/uncertainty in abuse cases is suggested by Brown & Turk
(1992). This system could be
usefully employed in further studies in this field.
Research relevant to people with learning disabilities
Mental health practitioners receive frequent referrals of clients who have
both learning disabilities and a known history of sexual abuse. So that
therapeutic work may be effective, practice must be grounded in research that
takes account of the cognitive, emotional, social and developmental factors
that are an integral part of the psychopathology of people with intellectual
disabilities. It is not sufficient to apply the established findings relevant
to other client groups, such as children or adults in the general population,
because factors associated with cognitive impairment will undoubtedly mediate
the impact of sexual trauma.
As this review has demonstrated, factual knowledge regarding the possible clinical sequelae of sexual abuse in this population is sparse. Research is needed to establish the range of psychological and behavioural effects of sexual abuse in people with a learning disability, employing standardised measures. Studies should use community samples that are not necessarily biased towards clients presenting with psychological disturbance (as in clinical samples). Most crucially, studies should compare findings for abused samples with non-abused control or comparison samples.
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Clinical Implications and Limitations |
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LIMITATIONS
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ACKNOWLEDGMENTS |
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Received for publication April 18, 2002. Revision received July 10, 2002. Accepted for publication July 16, 2002.
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