Gender differences in self-reportedsymptoms of depression and anxiety inadults with intellectual disabilities
Rebecca Chester, Eddie Chaplin, Elias Tsakanikos, Jane McCarthy, Nick Bouras andTom Craig
Rebecca Chester is a Lecturer
Practitioner in Learning
Disability Nursing at the
University of Hertfordshire,
Reading, UK.
Eddie Chaplin is Research and
Strategy Lead at the Estia
Centre, South London and
Maudsley NHS Foundation
Trust, London, UK.
Elias Tsakanikos is a Reader in
Psychology at the Department
of Psychology, Roehampton
University, London, UK and the
Health Service and Population
Research Department, Institute
of Psychiatry, King’s College
London, London, UK.
Jane McCarthy is a Clinical
Director, Nick Bouras is a
Professor Emeritus and Tom
Craig is a Professor, all at the
Institute of Psychiatry, King’s
College London, London, UK.
Abstract
Purpose – This study aimed to examine for differences on how symptoms relating to depression and
anxiety were reported by males and females with intellectual disability as part of the development of the
Self-Assessment Intervention Package (SAINT), a guided self-help tool.
Design/methodology/approach – Three self-report questionnaires were administered ( The Glasgow
Depression Scale – Learning Disabilities (GDS-LD)), Glasgow Anxiety Scale – Intellectual Disabilities
(GAS-ID) and Self-Assessment Intervention Package (SAINT ) to a group of people with mild intellectual
disabilities (n¼ 36), to allow comparison of symptom reporting between genders, in particular examining the
SAINT across the two groups.
Findings – Statistically significant differences in self-reported symptoms as assessed with SAINT were
found between males and females. The symptoms where related mainly to mood and self-esteem. Overall,
endorsement of self-reported depressive symptoms was between 2.7-3.2 times higher in female than
male patients.
Originality/value – There was evidence to suggest differences in self-report and symptom profiles of
depression and anxiety of males and females with mild intellectual disabilities with females reporting higher
in terms of symptoms using the SAINT. The SAINT is a valid tool for screening and self-reporting symptoms
of anxiety and depression in people with intellectual disabilities.
Keywords Intellectual disabilities, Depression, Anxiety, Gender, Self-report, Disabilities
Paper type Research paper
Introduction
This study aimed to examine gender differences in adults with mild intellectual disabilities
in terms of symptoms of depression and anxiety. The working hypothesis was that females
self-report differently to males.
Mood and anxiety disorders are the most common diagnoses of mental illness in people with
intellectual disabilities with estimates for mood disorders 5.5 per cent, depression 3.8 per cent
(Cooper et al., 2007) and anxiety disorder 6 per cent (Smiley, 2005). It is acknowledged that
people with intellectual disabilities are at greater risk of developing mental illness than the
general population with rates reported between 10 and 39 per cent (Deb et al., 2001). This
variation is likely for a number of reasons including definition used, identification and sampling
issues such as the inclusion and exclusion of challenging behaviour (Brothwick-Duffy, 1994).
There is some evidence of gender differences for specific diagnoses such as depression
(Smiley, 2005), with prevalence estimates for affective disorder reported at 5.5 per cent for
males and 8 per cent for female in people with intellectual disabilities (Cooper et al., 2007).
A number of studies have provided evidence to support higher rates of depression in women
DOI 10.1108/AMHID-03-2013-0025 VOL. 7 NO. 4 2013, pp. 191-200, C Emerald Group Publishing Limited, ISSN 2044-1282 j ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES j PAGE 191
(Birleson, 1981; Esbenson et al., 2005; Lunsky, 2003; Meins, 1993), although there are studies
that have found no relationship with gender (Aliley, 2009).
The higher levels of depression experienced by people with intellectual disabilities may be due to
a range of factors including a biological predisposition, increased exposure to adverse
psychosocial experiences and limited cognitive ability (McGillivray and McCabe, 2007). There is
evidence to suggest that symptoms of depression for people with intellectual disabilities are
similar to those within the general population, such as abusive experiences, poor social support
unemployment and social disadvantage (Meins, 1993; Aliley, 2009). A population-based study
of affective disorders for people with intellectual disabilities identified distinct characteristics
relating to female depression not only were rates of depression higher but the diagnosis was
associated with the following characteristics: more significant life events, smoking,
incontinence, type of accommodation including level of support; with a higher prevalence for
those living with paid carer support, lower ability, increased consultations and the absence of
severe physical disabilities and immobility, (Cooper et al., 2007).
To be able to identify signs of mental illness in people with intellectual disabilities we need to
understand how they present. This means knowing how individuals express themselves and if
this is different between the sexes. This is not only in line with recovery-focused approaches that
put the individual at the centre of services but challenges the notion of the “typical presentation”.
Two of the measures used in this study identify symptoms to assist making a diagnosis. The third
the Self-Assessment Intervention Package (SAINT) as well as self-report statements it has an
emphasis on self-management and also contains coping strategies and a diary offering
scope not only to examine how males and females differ in reporting but also in coping with
these symptoms.
Method
The study used three measures to examine differences in the reporting of symptoms of anxiety
and depression in males and females:
1. The Glasgow depression scale for people with intellectual disabilities (GDS-LD) (Cuthill
et al., 2003) consists of 20 items, with three response categories: never/no (0), sometimes (1)
or always/a lot (2), with five items reverse scored.
2. The Glasgow anxiety scale for people with intellectual disabilities (GAS-ID) (Mindham and
Espie, 2003) was developed as a self-rating tool to assess anxiety disorders in people
with intellectual disabilities it has 27 items and is scored like the GDS-LD. There are three
sub-groups to the tool, worries (ten questions), specific fears (nine questions) and
physiological symptoms (eight questions).
3. The SAINT (Chaplin et al., 2012a, b) is a self-assessment tool for people with intellectual
disabilities to use on a daily basis to identify symptoms of mental distress. There are two
sections: a feelings list and a list of things people can do to help them cope. It is a short
ten-item questionnaire written in an accessible format to promote independent use. The
Cronbach’s a suggested high internal consistency for the questionnaire at 0.868 (all n¼ 46
unless stated). With inter item correlation for internal consistency for any item deleted
ranged from 0.821 to 0.853. For convergent validity the Spearman’s r correlation coefficient
was calculated for the SAINT Total, GDS-LD Total and GAS-ID worries The SAINT showed
significant correlation at the 0.01 level (two-tailed) with the GDS-LD (r¼ 0.801), GAS-ID
worries (r¼ 0.658). The test-retest showed statistically significant correlation between Time
1 and Time 2 (r¼ 0.914, po0.01) (Figure 1).
Participants
The inclusion criteria for participants were:
’ aged over 18;
’ mild intellectual disabilities as defined by an IQ of between 50 and –70; and
’ evidence of/or history of affective disorder or anxiety disorder.
PAGE 192 j ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES j VOL. 7 NO. 4 2013
Figure 1 SAINT, GDS-LD and GAS-ID items
4. Do you worry about what will happen in the future? (tailored to the individual; e.g. What will happen if you can’t live with your mum anymore?)
5. Have you made sure you have washed yourself, worn clean clothes, brushed you teeth and combed your hair?
Glasgow Anxiety Scale for People with IntellectualDisabilities Worries
1. Do you worry a lot? (...feel worked up/wound up/uptight/up to high doh)
2. Do you have lots of thoughts that go round in your head? (...thoughts that you can’t stop/come from nowhere)
3. Do you worry about your parents/family?
5. Do you worry that something awful might happen?
6. Do you worry if you do not feel well? (...if you feel sick)
10. Do you worry about death/dying?
9. Can you stop worrying? (reverse score)
8. Do you worry about what you are doing tomorrow?
7. Do you worry when you are doing something new? (...like for the first time)
Glasgow Depression Scale for People withIntellectual Disabilities
In the last week
1. Have you felt sad?a. Have you felt upset?b. Have you felt miserable?c. Have you felt depressed?
2. Have you felt as if you are in a bad mood?a. Have you felt bad-tempered?b. Have you felt as if you want to shout at people?
3. Have you enjoyed the things you have done?a. Have you had fun?b. Have you enjoyed yourself?
4. Have you enjoyed talking to people and being with other people?
a. Have you liked having people around you?
b. Have you enjoyed other people’s company?
a. Have you taken care of the way you look?b. Have you looked after your appearance?
a. Have you gone to sleep during the day?b. Have you found it hard to stay awake during the day?
6. Have you felt tired during the day?
7. Have you cried?
8. Have you felt you are a horrible person?a. Have you felt others don’t like you?
VOL. 7 NO. 4 2013 j ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES j PAGE 193
Figure 1 (continued )
9. Have you been able to pay attention to things (such as watching TV)?a. Have you been able to concentrate on things (like television programmes)?
b. What is your favourite [television programme]? Are you able to watch it from start to finish?
b. Have you found it hard to choose between two things?[Give concrete example if required.]
a. Have you found it hard to decide what to wear, or what you would like to eat, or do?
10. Have you found it hard to make decisions?
b. Have you been moving about a lot, like you can’t help it?
a. Have you fidgeted when you are sitting down?
11. Have you found it hard to sit still?
12. Have you been eating too little?
a. Have you been eating too much?
b. Do people say you should eat more/less?
c. [Positive response for eating too much OR too little is scored.]
13. Have you found it hard to get a good night’s sleep?
a. [Ask questions to clarify information. If a positive response is given to one of the following, score positively.]
b. Have you found it hard to fall asleep at night?
c. Have you woken up in the middle of the night and found it hard to get back to sleep?
d. Have you woken up too early in the morning? [Clarify time.]
14. Have you felt that life is not worth living? (GAS-ID)a. Have you wished you could die?
b. Have you felt you do not want to go on living?
15. Have you felt as if everything is your fault?
a. Have you felt as if people blame you for things?
b. Have you felt that things happen because of you?
16. Have you felt that other people are looking at you, talking about you, or laughing at you?
a. Have you worried a bout what other people think of you?
17. Have you become very upset if someone says you have done something wrong or you have made a mistake?
a. Do you feel sad if someone tells you.../gives you a row?
b. Do you feel like crying if someone tells you.../gives you a row?
18. Have you felt worried?
a. Have you felt nervous?b. Have you felt tense/wound up/on edge?
PAGE 194 j ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES j VOL. 7 NO. 4 2013
Figure 1 (continued )
19. Have you thought that bad things keep happening to you?
a. Have you felt that nothing nice ever happens to you anymore?
20. Have you felt happy when something good happened? [If nothing good has happened in the past week
a. If someone gave you a nice present, would that make you happy?
SAINT
1. I am having bad thoughts
I feel people can control me
I have stopped activities and/or going out
• I feel like I can’t go on• I feel like hurting myself• I don’t want to be alive
People would be better off without me
2. I am not feeling myself• I am hearing things that are not there• I feel people know what I am thinking• I feel people can play with my thoughts
3. I feel in a panic• I feel my heart pounding• I feel hot and cold• I have the shakes
I am sweating
4. I find it difficult to do things (GDS-10)• I am losing interest in things• I don’t feel like going out• I can’t be bothered to change my clothes
5. I am having problems sleeping (GDS13)• I have trouble getting off to sleep• I have trouble waking up• I keep getting up during the night
I feel tired all the time
6. I feel down today (GDS 1)
• I am worried about my temper
I am worried about drinking too much and/or drugs• I feel angry
7. I don’t feel in control (GDS 2)
I feel stressed• I feel tense• I feel worried• I feel sad
VOL. 7 NO. 4 2013 j ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES j PAGE 195
Exclusion criteria for participants were:
’ service users who lack capacity.
Sample
This is a small sample with a large proportion of male participants recruited from inpatient
settings compared to females. Totally, forty-five participants were recruited to the study. Of these
nine participants (n¼ 9) did not take part or complete the study. Of the nine, seven participants
lacked capacity as defined under the principles of the Mental Capacity Act 2005 (Office of
the Public Guardian, 2005), one participant changed their mind and one became unwell and
was unable to participate. The total end sample consisted of 36 participants, all with mild
intellectual disabilities. The ratio of males to females was 21 males (58.3 per cent) and 15
females (41.7 per cent). Participants were aged between 18 and 65 with a total mean of 39 years
of age (SD¼ 12.021). Male participants were aged 18-59 with a mean age of 37 (SD¼ 11.879)
and female participants were aged 18-65 with a mean age of 41 (SD¼ 12.264).
Procedure
All participants were tested using the GDS-LD, GAS-ID and the SAINT. Interviews were
conducted in community and in-patient settings and took between 10 and 20 minutes to
complete. Ratings were made by two registered nurses experienced in working with people
intellectual disabilities and co-morbid mental health problems.
Analysis
Statistical analysis was undertaken using the Statistical Package for Social Science, Version 19
(SPSS 19). Independent-sample t-tests were used to compare scores on the employed
measures for males and females with intellectual disabilities.
Results
Total scores
For the SAINT scores, there was a statistically significant difference in total mean for males
(mean¼ 1.53, SD¼ 1.35) and females (mean¼ 4.67, SD¼ 3.31) with females reporting almost
three times more symptoms than males, t(17.387)¼�3.47, p¼ 0.003.
Figure 1 (continued )
I cannot concentrate on things• I am not washing or bathing• I am not eating well• I am not taking good care of myself
10. Looking after myself (GDS 5)
I am in pain• I feel unwell• I feel heartbroken• My mood keeps going up and down
9. I feel emotionalI keep letting people down
• I feel everyone hates and ignores me• I feel my life will not get any better• I feel people do not like me
8. I feel bad about myself (GDS 8)
PAGE 196 j ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES j VOL. 7 NO. 4 2013
In terms of the GDS-LD scores, females had a higher total mean score (mean¼ 10.33,
SD¼ 8.73) than males (mean¼ 6.33, SD¼ 6.56), although this was not statistically significant,
t(34)¼�1.57, p40.10. The GAS-ID reported that females had a higher total mean score
(mean¼ 18.13, SD 13.01) than males (m¼ 13.0, SD 7.596) but again this was not significant
t(34)¼�1.49, p40.10. Overall, females had higher total scores of self-reported symptoms of
depression, anxiety and mental distress than male participants across the three measures. This
was statistically significant for the SAINT but not for the GDS-LD or GAS-ID scores.
Individual symptoms and sub-scales
Further comparisons between males and females were performed on individual symptoms and
GAS-ID sub-scales: worries, specific fears and physiological symptoms. A number of significant
differences were revealed in that females scored higher than males on the following items: “I feel
down today” (SAINT item 6), for females (mean¼ 0.60, SD¼ 0.51) and for males (mean¼ 0.19,
SD¼ 0.40), t(25)¼�2.59, p¼ 0.015; “I feel bad about myself” (SAINT item 8), it was higher for
females (mean¼ 0.53, SD¼ 0.51) compared to males (mean¼ 0.19, SD¼ 0.40), t(25)¼�2.15,
p¼ 0.041); ‘Have you felt that other people are looking at you, talking about you, or laughing at
you? (GDS-LD item 16), for males lower (mean¼ 0.14, SD¼ 0.478) than females (mean¼ 0.67,
SD¼ 0.816) t(20.823)¼�2.227, p¼ 0.037: “Have you worried about what other people think
of you?” and do you feel scared in wide open spaces? (y.nothing round about you) (GDS-LD
item 19), for males was lower (mean¼ 0.10, SD¼ 0.30) than females (mean 0.67, SD¼ 0.82).
The measurement of difference between males and females for this item was the largest of the
total scores and individual item scores with females reporting about seven times higher than
males, t(16.736)¼�2.588, p¼ 0.000.
Discussion
There is a scarcity of research that examines the different self-report profiles of males and
females with intellectual disabilities with depression and/or anxiety. There is concern that self-
reported symptoms are expressed differently in depressed males (Poutanen et al., 2009; Dekker
et al., 2007). In terms of choice of measures for the study recent reviews (Hermans and
Evenhuis, 2010; Hermans et al., 2011) have identified both the GDS-LD and GAS-ID as the most
capable of the tools in identifying self-reported symptoms of depression for people with
intellectual disabilities. The SAINT has also demonstrated good internal consistency and
reliability with significant correlation to the GDS-LD and GAS-ID suggesting that it is a valid
tool for screening and self-report for depression and anxiety in people with intellectual disabilities
(Chaplin et al., 2012b).
Many people that are referred to clinics do not meet the threshold for a clinical diagnosis but it
may be how people act and behave that necessitates referral. A recent study of a specialist
mental health clinic population found although females were less likely to receive a diagnosis
they were more likely to receive sedatives (Tsakanikos et al., 2011). The lack of a clinical
diagnosis can sometimes mask the real picture. An earlier study reported higher rates of
adjustment reactions (AR) in women with intellectual disabilities. AR is characterised by high
levels of anxiety and depression that fall below the threshold of a clinical diagnosis and is a
reaction to a stressor in the last three months (Tsakanikos et al., 2006).
The main aim of this study was to gain a better understanding of how males and females with
intellectual disabilities self-report symptoms of mental illness, primarily depression and anxiety.
Overall females reported higher levels of psychopathology including symptoms of depression
and anxiety using the SAINT, GDS-LD and GAS-ID compared to males. However, this was only
statistically significant for the SAINT, which measures mental distress as a general concept. Why
this should be so is unclear it may be that females with intellectual disabilities are more likely to
endorse general statements of distress as assessed by the SAINT rather than more specific
depressive symptoms. It may be that this style of questioning is more easily understood given
difficulties in reporting within this group (Larson et al., 2011). We found that females self-report
differently to males, evidenced by increased levels of self-report of symptoms using the SAINT
although this was not the case with the GDS-LD and GAS-ID. The general increased self-report
by females is in agreement with previous findings in the general population where there is
VOL. 7 NO. 4 2013 j ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES j PAGE 197
evidence regarding increased prevalence and self-report of depressive symptoms
by females (Dekker et al., 2007). Furthermore, the overall increase in depressive symptoms
for females with ID was consistent with other studies that employed either interviews or reports
by carers (Esbenson et al., 2005; Lunsky, 2003; Meins, 1993; Lunsky and Benson, 2001;
Heiman, 2001).
The SAINT total suggested that women self-reported symptoms of mental distress three times
higher than males. This is higher than identified from previous reports that females were
approximately one and a half times more likely to receive a diagnosis of affective disorders
(Cooper et al., 2007). Disparity may be due to differences in methodology and criterion used as
the SAINT identifies symptoms of mental distress including anxiety and depression. The SAINT
has not been developed as a diagnostic tool but as a tool for self-managing mental distress and
promoting wellness. The GDS-LD total score reported an increased ratio of self-report from
females of 1.6 times higher than males but this finding was not statistically significant.
Although women reported higher levels of anxiety, this did not reach significance using the
GAS-ID. This supports other studies where anxiety has not been reported to be significantly
increased for women with intellectual disabilities (Pickersgill et al., 1994; Glenn et al., 2003).
In terms of the GAS-ID fears section there was increased reporting of fears in females compared
to males for people without intellectual disabilities, but there was no significant increase in self-
report of fears for women compared to men with intellectual disabilities. In terms of symptom
profiles of mental distress, depression and significant differences were found for individual items
of the SAINT, GDS-LD and GAS-ID. Females had significantly increased self-report for SAINT6,
“I feel down today”, SAINT8, “I feel bad about myself”. GDS-16 “Have you felt other people are
looking at you, talking about you, or laughing at you? Have you worried what other people think
of you?” and GAS-ID19, “do you feel scared in wide open spaces?”
Women generally reported higher than males for individual items of the GDS-LD, GAS-ID and
SAINT although there were three individual items in the GDS-ID that males reported higher than
females and two items reported at the same or marginally different to females. This suggests that
the GDS-LD is sensitive to identifying symptoms of depression associated with men with
intellectual disabilities. Although these areas were not statistically significant, they warrant
discussion. The highest increased self-report for males compared to females was GDS-LD 12,
“Have you been eating too little/have you been eating too much?” Men were 2.174 times more
likely to report this symptom than females. Men also reported higher levels for GDS-LD 13, Have
you found it difficult to get a good nights sleep?’ and GDS-LD 6, “Have you felt tired during the
day?” These symptoms relate to somatic symptoms of depression opposed to psychological
symptoms of depression. The increased presence of tiredness in males compared to females in
people without intellectual disabilities has also been reported (Poutanen et al., 2009). There is no
evidence regarding gender, depression and intellectual disabilities to compare the findings of the
current study. The high ratio of males to females from inpatient services may have contributed to
a skew in the results as people in inpatient services may have higher mental health needs.
A larger sample would have been desirable to match participants for age, ethnicity and by
current services being accessed to infer more from the findings. The study has highlighted
differences in reporting between males and females. This type of study is difficult to generalise
with previous studies producing inconsistent results and finding no difference which may be
down to simple methodological problems such as sample size and measures (Heiman, 2001).
Conclusion
The present study showed clear gender differences in self-reported symptoms profiles of
depression and anxiety in a group of adults with ID. Using the SAINT, a self-report inventory
specifically designed for this population, females were found to report three times more
symptoms of depression and general distress. This supported the hypothesis that females
self-report differently to males evidenced by increased levels of self-report of symptoms of
mental distress using the SAINT in female participants. Using the GDS-LD female symptom
reporting was higher than males although this was not statistically significant. Finally the GAS-ID
self-report for females was 1.34 times higher than males.
PAGE 198 j ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES j VOL. 7 NO. 4 2013
Data across the three questionnaires demonstrated that females had higher total scores
of self-reported symptoms of depression and anxiety than male participants with a number
of items reaching significance. The increase in self-report of females was statistically significant
for the SAINT total score but was not statistically significant for the total GDS-LD or total
GAS-ID score.
What do we already know on this topic?
’ prevalence estimates of affective disorders are reported to be higher in females than males
(Cooper et al., 2007);
’ higher rates of depression are reported by females than males (Birleson, 1981; Esbenson
et al., 2005; Lunsky, 2003; Meins, 1993);
’ there is a dearth of research in to the symptom profiles and characteristics of anxiety or
depression for males and females with intellectual disabilities; and
’ cooper et al. (2007) identified more significant life events, smoking, incontinence, type of
accommodation including level of support, lower ability, increased consultations and the
absence of severe physical disabilities and immobility with higher rates of depression in
female patients with intellectual disabilities.
What more does this study contribute?
’ the present study showed clear gender differences in self-reported symptoms profiles of
depression and anxiety in a group of adults with intellectual disabilities;
’ females were found to report three times more symptoms of depression and general distress
than males with intellectual disabilities;
’ the SAINT is a valid tool for screening and self-reports of symptoms of depression and
anxiety; and
’ due to the self-report element of the SAINT this tool could be used to support recovery
focused approaches for people with intellectual disabilities.
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Corresponding author
Eddie Chaplin can be contacted at: [email protected]
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