Adults With Intelectual Disability Discuss Loneliness
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Transcript of Adults With Intelectual Disability Discuss Loneliness
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I Get by with a Little Help from my Friends:Adults with Intellectual Disability DiscussLoneliness1
Keith R. McVilly*, Roger J. Stancliffe*, Trevor R. Parmenter* and Rosanne M. Burton-Smith
*Centre for Developmental Disability Studies, University of Sydney, Sydney, Australia, School of Psychology, University of
Tasmania, Hobart, Australia
Accepted for publication 10 May 2005
Background This study explored loneliness as experi-
enced by adults with intellectual disability, with inter-
mittent to limited support needs.
Method A measure of loneliness was piloted, and qualit-
ative techniques used to develop a greater understand-
ing of the participants experience.
Results The Loneliness Scale proved valid and reliable
and the participants reported loneliness in ways com-
parable with the general population.
Conclusions The findings demonstrate the effectiveness
of combining quantitative and qualitative techniques
to enhance understanding of peoples perspective
when developing support systems to promote their
quality of life. Based on participant perspectives, rec-
ommendations are made concerning the issues and
types of support families and professionals could consi-
der when seeking to assist people with intellectual dis-
ability address loneliness. Further investigation of the
effects of differing educational and vocational oppor-
tunities on peoples post-school social networks
appears warranted.
Keywords: friendship, intellectual disability, loneliness,
qualitative analysis, quality of life, relationships
Introduction
Stable and rewarding interpersonal relationships are
arguably the single most important factor influencing a
persons quality of life (Kennedy & Itkonen 1996). In
support of this, the literature documents how relation-
ships provide practical aid, emotional support, informa-
tion, assistance with decision making, and opportunities
to broaden existing support networks (Hughes 1999), as
well as important safeguards against stress and psycho-
logical illness (Duck 1991). The literature further docu-
ments specific mental and physical health benefits
associated with the development of interpersonal net-
works, and the adverse consequences associated with
having poor social networks and the experience of lone-
liness (Lynch 1977; Bloom et al. 1978; Flynn 1989; Stan-
feld 1999).
Service providers and policy makers need to be con-
scious that, for many people with disability, significant
interpersonal relationships are rare or non-existent
(Fleming & Stenfert-Kroese 1990; Blum et al. 1991;
Rapley & Beyer 1996; Amado 2004; Duvdevany & Arar
2004). Yet, opportunities for people with disability to
develop and maintain personal relationships are impor-
tant to the people themselves (Halpern et al. 1986;
McVilly 1995; Froese et al. 1999; Johnson 2000; Knox &
Hickson 2001; Read 2002), as well as to their families
and advocates (Strully & Strully 1985). Furthermore,
loneliness and the lack of or disruption to peoples net-
works could be significant factors contributing to psy-
chopathology (e.g. depression and anxiety), manifest as
challenging behaviour (Lunsky & Havercamp 1999;
McVilly 2002).
To put the experiences of people with intellectual dis-
ability into perspective, and to highlight the potential
for loneliness to be a significant factor influencing their
quality of life, Katz & Yekutiel (1974) reported that 61%
of graduates from an adult training programme had no
1This paper is based on the Doctoral Research of Keith R. McV-
illy, and partly funded by an Australian Postgraduate Award,
in the Faculty of Medicine, University of Sydney.
Journal of Applied Research in Intellectual Disabilities 2006, 19, 191203
2006 BILD Publications 10.1111/j.1468-3148.2005.00261.x
-
friends. Hill et al. (1984) reported a special relationship
to be evident for only 36% of people in an institutional
facility and for only 58% of those in community resi-
dences. Barber & Hupp (1993) reported people living in
smaller groups to have larger social networks and con-
cluded that the size of the social networks of those liv-
ing in smaller groups was comparable with the size of
social networks in the general population. However,
Krauss et al. (1992) reported that among adults with
intellectual disability living at home, 42% of participants
had no friends outside of their immediate family (here,
although the absence of non-familial relationships need
not automatically imply loneliness). Similarly, Petrovski
& Gleeson (1997) reported that while 73% of participants
in competitive employment indicated that they had
friends at work, 97% of these indicated that they did not
see any of their work-friends outside of the work place.
Furthermore, of the participants who indicated that they
had friends outside of work, the majority of people
reported seeing their non-work friends only infre-
quently. These findings are in contrast to the experience
of people in the general population where, in excess of
70% of time spent socializing is reported to be with
friends, rather than with family or extended family
members [Australian Bureau of Statistics (ABS) 1997].
Furthermore, Emerson & McVilly (2004) reported find-
ings from a large population-based study which indi-
cated overall low levels of friendship activities for
adults with intellectual disability (e.g. having a friend
visit their house or visiting a friends house) and that
most activities with friends occurred in public places,
with little or no opportunity for privacy. These findings
also suggested that the settings in which participants
lived were more significant determinants of the form
and content of friendship activities, than the partici-
pants personal characteristics (i.e. skills and behav-
iours).
It is therefore evident that, although many people
with developmental disability are at least more physic-
ally integrated and have the opportunity for activities in
their neighbourhoods and towns, most are still not
really part of their communities. The majority of these
people have very few, if any friends (Amado 1993, pp.
279280). Do these individuals experience social isola-
tion and, if so, does this give rise to an experience of
loneliness as it is understood in the general population?
If loneliness is a consequence, how do people with intel-
lectual disability conceptualize this and what would
they like to do about it?
Peplau & Perlman (1982) have defined loneliness in
terms of an unpleasant experience arising from insuffi-
cient social interaction. They further assert that it is
essentially a personal (subjective) experience, indepen-
dent of either the quantity or duration of social interac-
tion. For this reason, loneliness can be understood to
reflect a discrepancy between an individuals expecta-
tions concerning relationships and his or her interpret-
ation of their own social experience. Andersson et al.
(1987), consistent with Weiss (1973) and Russell et al.
(1984), have defined loneliness as two separate, but
inter-related dimensions. The first is the social dimen-
sion, arising as a result of the persons experience of
deficiencies in his/her social network and his/her lack
of social integration (i.e. peer group acceptance and
involvement in collective activity). The second is the
emotional dimension, arising from the persons per-
ceived lack of meaningful and rewarding socio-emo-
tional bonding with others, on a more intimate level.
Weiss (1973) questioned if the experience of loneliness
was a meaningful and measurable construct for those at
the earlier stages of socio-emotional development. How-
ever, a number of studies have since established it to be
a construct that can be measured reliably in children as
young as 812 years of age (Asher et al. 1984; Asher &
Wheeler 1985; Marcoen & Brumagne 1985). Furthermore,
Cassidy & Asher (1992) reported in a study of children
aged 57 years, 93% of participants were able to des-
cribe feelings of both aloneness and sadness in
response to the question Do you know what being
lonely means?, with the remaining 7% providing a sat-
isfactory description of aloneness, but not sadness.
Williams & Asher (1992) reported success in measur-
ing loneliness in a study involving 62 matched pairs of
students with and without intellectual disability, 8
12 years of age. So too, Chadsey-Rusch et al. (1992)
reported that it is possible to obtain a reliable measure
of loneliness for adults with mild to moderate intellec-
tual disability. Similarly, Petrovski & Gleeson (1997),
using standardized measures, reported that adults with
mild intellectual disability did not appear to experience
difficulties relating their experiences of loneliness. They
found a moderate negative correlation between self-
reported measures of loneliness and job satisfaction.
Heiman & Margalit (1998) reported students aged 11
16 years with mild intellectual disability to self-report
higher levels of loneliness than their peers without dis-
ability. Heiman (2001) further reported an association
between self-reported ratings of loneliness and self-
reported ratings of depression.
Although it appears possible to use standardized
instruments to measure loneliness in people with intel-
lectual disability, such an approach is limited in that it
192 Journal of Applied Research in Intellectual Disabilities
2006 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 19, 191203
-
superimposes on the assessment process the resear-
chers preconceived ideas of how the participants will
conceptualize and describe their experience. This quanti-
tative approach is useful for testing established theory.
However, standardized questionnaires alone are insuffi-
cient when seeking to explore and explain the lived
experience of participants (Barnes 1992; Schwandt 1994;
Rice & Ezzy 1999). Conversely, open-ended or semi--
structured interviews alone, although having the poten-
tial to generate rich narrative data, can be more
confusing than clarifying, especially where respondents
have limited expressive communication skills (Biklen &
Moseley 1988). Therefore, the integration of quantitative
and qualitative techniques, as is commonly the practice
in a clinical setting, is proposed as an appropriate
research methodology (ODay & Killeen 2002). Further-
more, harnessing qualitative techniques is in keeping
with the growing recognition of the importance of lis-
tening to people with disability relate their own experi-
ences, as a means of developing an understanding of
those experiences in order to better live and effectively
work with them (Lowe 1992; McVilly 1995; Goodley
1996; Azmi et al. 1997; Kitchin 2000; Knox et al. 2000;
Knox & Hickson 2001; Heenan 2002; Pearson et al. 2002;
Brantlinger et al. 2005).
This study, part of a wider investigation on the
friendship aspirations and experiences of people with
intellectual disability (McVilly 2004), explored the con-
struct of loneliness as experienced by participants in
post-secondary school education and employment. It
involved both piloting a Loneliness Scale and harnessing
qualitative techniques to identify factors that could
influence or explain the participants experience of lone-
liness. It was proposed that assessing and developing an
understanding of the participants experience would
provide insight and guidance for family members and
service providers, assisting them to develop more
appropriate and effective strategies to promote a quality
life for people with intellectual disability, including
meaningful and rewarding relationships.
Method
Participants
Participants consisted of a purposive sample of 22 males
and 29 females, aged 1652 years (mean (M) 25 years,2 months). All had intellectual disability with limited
to intermittent support needs; i.e. life-long, requiring
episodic to regular planned support with the execution
of identified conceptual, social or practical skills in
specific life domains (Luckasson et al., 2002). This was
established with reference to a combination of individual
records and by assessment using the Scales of Inde-
pendent BehaviourRevised (Bruininks et al. 1996). All
were verbal and none had a physical or sensory disabil-
ity. Thirty-nine lived with their parents, six in supported
accommodation and six in their own home, although in
receipt of regular support. Forty-two attended Technical
And Further Education (TAFE) college programmes
designed for adults with intellectual disability and nine
worked in supported employment. All volunteered in
response to an invitation to participate via their class
teacher or work supervisor. There were no volunteers
who required exclusion from the current study (e.g.
because of their inability to participate in the assess-
ment).
Instrumentation
Participant data were collected in two ways: a Loneli-
ness Scale was administered to all 51 participants; and a
sub-set of participants also undertook a semi-structured
interview, developed as part of the wider study of
friendship issues. Moreover, proxy data were gathered
as part of the wider study, using a background ques-
tionnaire for parents, teachers and work supervisors.
The Loneliness Scale
The original version of the Loneliness Scale was devel-
oped for use with children (Asher & Wheeler 1985). The
current adaptation used the 15 core loneliness questions.
However, items were modified to read as first person
statements and to better reflect the adult status of the
respondents. For example, Do you have friends at
school? was changed to read I have friends. The
response scale was modified, extending the original
three-point scale (Yes, No or Sometimes) to a five-point
scale, (Never, Rarely, Sometimes, Usually and Always).
In addition, the response format was modified from a
verbal report, to incorporate a card-sort exercise and a
visual analogue scale. These modifications were made to
enhance reliability, by focusing respondent attention on
single items and by making the decisionresponse task
more tangible (Dattilo et al. 1996).
The card-sort exercise incorporated a visual analogue
scale based on five categories, with each of the descrip-
tions augmented by ticks (Never no tick toAlways XXXX). At each of the five points, the A4landscape sheet was perforated by a metal file fastener,
providing a spike on which response cards (hole-
Journal of Applied Research in Intellectual Disabilities 193
2006 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 19, 191203
-
punched at one end) could be placed. The presentation of
the loneliness items on individual cards was preceded by
seven training cards. The training items were designed to
both teach the respondents how to use the scale and to
identify any participants whose scale-based responses
could not be considered reliable. Each category was
explained to the respondent: e.g. this means what I read
NEVER sounds like you. Then, for each item, therespondent was asked How often does this sound like
you?. The card was then read aloud and handed to therespondent. Respondents were cued with a consistent
moving hand gesture to select one of the response categ-
ories. Where respondents exhibited difficulty, two forms
of assistance were offered; first, verbatim repetition of the
question; and second, where they still exhibited difficulty,
a standard rephrasing, How much does this sound like
you; how many ticks would you give it: ? (Sigelmanet al. 1983). All participants demonstrated competence in
the use of the scale, consistently providing appropriate
responses to the training items.
Loneliness items were scored on a scale of 0 (Never)
to 4 (Always). Consistent with the original scale, five
items were phrased such that higher ratings were indic-
ative of loneliness (e.g. I feel all alone), and 10 items
were phrased such that higher ratings were interpreted
to be more positive, i.e. indicative of less loneliness (e.g.
It is easy to make new friends). Prior to conducting the
analysis, the 10 positive items were reverse-scored. Sub-
sequently, possible total scores ranged between 0 (never
lonely) and 60 (always lonely).
Semi-structured interviews
The semi-structured interview was developed as part of
the wider study, based on issues drawn from both the
literature concerning friendship for adults in the general
population and the findings of a series of focus groups
consisting of adults with intellectual disability (McVilly
2004). There were seven key areas of questioning: perso-
nal profile and demographics (confirmed by parents,
teachers and work supervisors); daily activities and
occupation; personal networks; contact with people con-
sidered a friend; background to individual friendships;
description of a best friend; reflections on friendship
experiences overall, including loss and/or absence of
friendships.
Procedures
Approval was provided by both the University of Sydney
Human Research Ethics Committee and the University of
Tasmania Human Research Ethics Committee. Partici-
pants at TAFE colleges were contacted via the Teacher
Consultant in disability at each of five colleges, and parti-
cipated as volunteers during class-time. Participants in
supported employment were approached via their
employer and given an opportunity to volunteer during
work time.
All 51 participants completed the Modified Loneliness
Scale. Of these, 16 (31%) participants volunteered to
repeat the questionnaire, approximately 2 weeks later.
None reported any significant adverse life events in the
intervening period. All respondents were then invited to
participate in an interview about friendship issues. Sub-
sequently, 32 (63%) volunteered for the in-depth inter-
view. For each participant, interviews were conducted
at a location with which they were already familiar (e.g.
TAFE college or workplace), over two to three weekly
sessions of approximately 1 h each. Significant others
(parents, teachers and work supervisors) were also
asked if, in their opinion, the participant was lonely
and/or wanted to have more friends. Their responses
were recorded on an informant questionnaire, conduc-
ted as part of the wider study of friendship issues.
Data were analysed using both deductive and induct-
ive techniques. First, participants Loneliness Scale data
were analysed using Statistical Package for the Social
Sciences (SPSS 2003). Second, criterion sampling, based
on the quantitative analysis, was then used to identify
two sub-groups of participants (most lonely and least
lonely). Interview data from the two sub-groups were
compared and analysed using the Constant Comparat-
ive Method (Lincoln & Guba 1985). The themes were
then used to develop both a descriptive and an explana-
tory narrative about the phenomenon of loneliness
from the participants perspective. Direct quotations
were used to elucidate the themes, with minimal para-
phrasing used only in the interests of clarity. The the-
matic interpretations were in turn validated with
reference to a focus group of adults with intellectual dis-
ability (McVilly 2004).
Results
The Modified Loneliness Scale
Psychometric properties of the scale
Participants scores on the Modified Loneliness Scale
ranged between 0 and 47 (M 18.04; SD 10.41). Reli-ability of the scale total score was first explored using
split-half (odd/even) reliability analysis, a measure of
194 Journal of Applied Research in Intellectual Disabilities
2006 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 19, 191203
-
internal consistency. The Guttman split-half coefficient
(an estimate of reliability that does not assume the two
parts are of equal length or of equal variance) indicated
a to be 0.78 (P < 0.05). Reliability of the scale wasfurther explored by applying a test/re-test model for a
sub-set of 16 total scores, from those participants who
had undergone the repeated administration. A paired-
samples t-test indicated that there was no significant dif-
ference between participants total scores on the first
(M 17.69; SD 8.43) and those on the second admin-istration [M 18.69; SD 10.13; t(15) )0.87, P 0.40;Pearsons r-value was 0.89, P < 0.01]. Finally, where
proxy reports were available (i.e. from parents, teachers
and work supervisors), there was a significant difference
in the Loneliness Scale scores for participants identified
by proxies as lonely (M 26.71; SD 11.03) and thoseidentified as not lonely (M 16.86; SD 5.95,t(19) )2.69, P 0.01). Additional confirmation of theecological validity of the scale was evident in the analy-
sis of the semi-structured interviews, discussed later.
Relationship between ratings of loneliness and participant
characteristics
Self-reported ratings of loneliness were investigated in
relation to the participants characteristics, using mul-
tiple regression, with the Loneliness Scale score as the
dependent variable. Independent variables were partici-
pant gender (male or female), age (in months), living
arrangements (with family or independently), school
history (special education or mainstream), primary day
activity (TAFE or employment), community access
arrangements (supported or independent), and relation-
ship status (single or couple). The analysis indicated no
problems with collinerarity among any of the independ-
ent variables. Correlations (Pearsons r) between the var-
iables are given in Table 1.
Following the application of stepwise regression
(backward selection), only two factors remained in the
equation, explaining 19% of the variance [R2 0.19,F(2,48) 5.37, P < 0.01; school history (beta )0.29,P < 0.05) and primary day activity (beta )0.32,P < 0.05)]. Participants who had attended a special
school reported higher levels of loneliness (M 22.44;SD 10.11) than those who had attended a mainstreamschool (M 16.03; SD 10.06). Participants whose pri-mary day activity was TAFE reported higher levels of
loneliness (M 20.93; SD 11.08) than those whoseprimary day activity was employment (M 14.23;SD 8.22). There were no statistically significant rela-tionships evident between reported levels of loneliness T
able1
Co
rrel
atio
ns
(Pea
rso
ns
r)b
etw
een
the
char
acte
rist
ics
of
par
tici
pan
ts(n
51)
and
thei
rra
tin
gs
of
lon
elin
ess
(an
das
soci
ated
P-v
alu
es)
Sel
f-re
port
ed
rati
ng
of
lon
elin
ess
Gen
der
(mal
e/fe
mal
e)
Age
(mon
ths)
Liv
ing
arra
nge
men
ts
(fam
ily/
inde
pen
den
t)
Sch
ool
hist
ory
(spe
cial
ed./
mai
nst
ream
)
Pri
mar
yda
y
acti
vity
(TA
FE
/em
ploy
ed)
Com
mu
nit
yac
cess
(su
ppor
ted/
inde
pen
den
t)
Rel
atio
nsh
ip
stat
us
(sin
gle/
cou
ple)
Sel
f-re
po
rted
rati
ng
of
lon
elin
ess
Gen
der
(mal
e/fe
mal
e)0.
11(0
.23)
Ag
e(m
on
ths)
)0.
15(0
.16)
0.05
(0.3
8)
Liv
ing
arra
ng
emen
ts(f
amil
y/
ind
epen
den
tly
)
)0.
22(0
.07)
0.05
(0.3
7)0.
65(0
.00)
Sch
oo
lh
isto
ry(s
pec
ial
ed./
mai
nst
ream
)
)0.
29(0
.02)
0.13
(0.1
9))
0.12
(0.2
0)0.
06(0
.34)
Pri
mar
yd
ayac
tiv
ity
(TA
FE
/em
plo
yed
)
)0.
33(0
.01)
)0.
42(0
.00)
0.23
(0.0
6)0.
30(0
.02)
0.02
(0.4
6)
Co
mm
un
ity
acce
ss
(su
pp
ort
ed/
ind
epen
den
t)
)0.
02(0
.44)
0.02
(0.4
5))
0.03
(0.4
3)0.
08(0
.29)
0.09
(0.2
7)0.
02(0
.46)
Rel
atio
nsh
ipst
atu
s
(sin
gle
/co
up
le)
)0.
14(0
.17)
)0.
03(0
.43)
0.17
(0.1
2)0.
20(0
.08)
)0.
04(0
.39)
0.07
(0.3
3)0.
13(0
.18)
Journal of Applied Research in Intellectual Disabilities 195
2006 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 19, 191203
-
and participant gender, age, living arrangements, ability
to access the community independent of support, or
interestingly, relationship status. Finally, the correlations
in Table 1 indicated that older participants more com-
monly lived independent of their family, and those liv-
ing with their family more commonly attended TAFE
rather than being employed.
Given the comparatively small initial sample size, the
number of individual characteristics to be considered
and the additional effect of missing data on sample size,
additional analyses were limited to bivariate correlations
(Pearsons r). Correlations between loneliness scores and
various social factors are presented in Table 2. As this
table shows, most correlations did not attain statistical
significance. However, there was a significant, negative
correlation between participant ratings of loneliness and
their reported duration of contact with nominated
friends; i.e. ratings of loneliness decreased as reported
duration of contact increased (r )0.44, P < 0.05). Inaddition to the relationship between participant charac-
teristics and ratings of loneliness, there was a significant
positive correlation between the number of people
nominated by participants as friends and the number of
leisure activities they identified (r 0.35, P < 0.05).Moreover, there was a significant negative correlation
between the participants reported frequency of social
activity and their age, with older people reporting lower
frequency of social activity (r )0.40, P < 0.05).
The semi-structured interviews
The semi-structured interviews of participants whose
Loneliness Scale rating was >1 SD below or above the
sample mean were then analysed. Consequently two
groups, each consisting of six participants, were identi-
fied. A summary of participant profiles for the most
lonely and least lonely groups are provided in Table 3.
Not surprisingly, the mean self-reported rating of loneli-
ness for the most lonely group (M 34.50; SD 8.09)was significantly greater than that for the least lonely
group (M 2.17; SD 2.40, t(10) )9.38, P < 0.001).Transcripts of the selected interviews were each read
and explanatory quotes extracted and collated according
to the major domains of the original interview protocol:
(a) participant networks and contacts with friends; (b)
background to and descriptions of best friendships, and
reflections on friendship experiences.
Participant networks and contacts with friends
Each participant identified as most lonely was able to
nominate a person they would call a friend. They gen-
erally reported contact with their best friend to be less
than once a week and mostly less than once a month.
Five of the six most lonely participants indicated a dis-
crepancy between how frequently they currently saw
their nominated friend and how frequently they would
like to see them. The one person who reported being
happy with their current frequency of contact, several
times a week, described his relationship thus: Hes a
nice person; hes got a good attitude; his name is A;
because Ive known him the longest; but he doesnt take
it [our friendship] seriously. One of the most lonely
participants could not identify a current friend. For the
purpose of the interview, they chose to talk about a per-
son who used to be a friend, and who they no longer
saw: I had a boyfriend; she (the person who used to be
her friend) kissed him; we stopped being friends; C and
my boyfriend.
Among the six most lonely participants, four spoke
of having or having had significant relationships with
other people with disability: we both have a disability;
we both know what it is like to have a disability; she
finds it hard to get friends; hes just like me, has a dis-
ability; but different, Im goofy and hes quiet. These
individuals suggested that after leaving school, making
friends was difficult, but easier where the other person
had a disability: at school you get left out (reporting
4 years experience of an integrated high-school); at
TAFE you are all on the same level; we have all been
through the same things (attending TAFE classes
designed to meet the needs of students with intellectual
disability). The two participants in the most lonely
group who identified a person without disability as a
friend both spoke of their friendships having been
Table 2 Correlations (Pearsons r) between occupational and
social factors reported by participants (n 51) and their self-reported ratings of loneliness
Day-time occupation
Study days per week 0.12
Working days per week )0.25Social network
No. of people identified )0.21Mean frequency of contact )0.15Mean duration of contact )0.44*No. of activities identified 0.21
Mean frequency of activities 0.00
Mean duration of activities 0.13
Positive correlations are associated with participant ratings
indicating HIGHER levels of loneliness; *P < 0.05.
196 Journal of Applied Research in Intellectual Disabilities
2006 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 19, 191203
-
forged in an integrated school setting. However, they
reported their current contact to be less than once a
month, and in both instances indicated that this was
because she is studying her HSC. Here it was possible
that, while the integrated school experience had fostered
friendships, these relationships had not been sustained
beyond the school environment in such a way as to pre-
vent or at least temper the experience of loneliness.
The least lonely participants reported the frequency
of contact with their friend to be in keeping with their
aspirations (e.g. at least several times per week): I see
them Saturday, Sunday and Tuesday, just when ever I
can; keep it just as it is. Furthermore, for the least
lonely group, multiple relationships were consistently
reported. The one participant who was living with his
spouse spoke positively of his marriage, but for the
focus of the interview opted to describe a relationship
with his friend T: we stuck by one another; we kept
contact after he moved to Queensland and when he
came back; he is the only one from school who kept
contact; we always ring one another up. Four of the six
participants in the least lonely group spoke of the dis-
tinct, yet complementary role of boyfriend/girlfriend
and other best friends: I only see him a few times a
week; I have time for other friends, to hang out, do
stuff, go to the movies. Those in the least lonely group
consistently volunteered information not only about
their nominated friend, but also about their connections
with others that were linked to their relationship with
their best friend: we play cricket with our mates. One
participant explicitly stated the value of social networks
to promoting friendship: friends help you make
friends.
Background to and descriptions of best friendships, and
reflections on friendship
The most lonely participants described friendship as
involving trust, a person with whom they could talk
openly and honestly, who was a loyal confidante and
Table 3 Summary of participant profiles
for the most lonely and least lonely
groups
Group 1 most lonely Group 2 least lonely
Gender
One male Five males
Five Females One female
Age
1731 years (M 21 years 10 months) 1751 years (M 27 years 5 months)
SIB-R scores
Broad Independence 13 to 54
(M 45.75)Broad Independence 38 to 58
(M 48.60)Support Level Score 76 to 82
(M 79.25)Support Level Score 57 to 82
(M 71.00)Support Category Intermittent Support Category Intermittent
Communication skills
All could speak in sentences
None used Augmentative & Alternative
Communication (AAC) techniques
All could speak in sentences
None used Augmentative & Alternative
Communication (AAC) techniques
Living arrangements
All six living with parents Four living with parents
One living with partner
One living in group home
Day activities
One was employed Five were employed
Five attending TAFE One attending TAFE
Social circumstances
All were single Five were single
Two to seven significant others
(M 4.33)One with a partner
Three to seven social activities
(M 5.33)Two to 15 significant others (M 6.67)
Three to six social activities (M 4.83)
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who could provide social and moral support: A friend
is truthful and open; I hate secrets; I hate bitching; A
person you can trust to keep secrets; they have to be
honest, someone who knows how you feel; someone
who cares about you, no matter who you are; someone
you can trust, who cares for you; who stands up for
you. A friend was also described as a person with
whom to share activities of mutual interest: You can go
out and do nice things; go out and have fun; go out
with them on the weekends; going to parties, dance
parties parties without drugs. However, for this
group, activity seemed to be of secondary importance to
the opportunity to exchange thoughts and ideas: It
doesnt matter where you are, so long as you can talk.
The one most lonely participant who chose to talk
about a past friendship recalled how When I was upset
she would cuddle me and if she was upset, I would
cuddle her; she would listen to my problems and I
would listen to hers; we went out to night clubs to 4am;
I went to her place and she went to mine; I cooked for
her and she cooked for me only once or twice. This
same participant recalled I had a man friend, he used
to live next door; he was trustworthy; he used to get
drunk he was an idiot drunk; then I hated him; I dont
want to talk about that. For those who were lonely, a
common experience was that of recurrent betrayal of
trust in their relationships.
Another of the most lonely participants started by
saying I dont really have a friend; they all turn out to
be back stabbers. She later went on to describe having a
boyfriend: Ive known him a long time 3 years; we
have been dating for 1 year; he works in a factory; I
dont know what he does; he doesnt backstab. How-
ever, this exclusive and relatively long-standing relation-
ship did not seem satisfying. She stated: I want more
friends; the more you find the more you feel happy.
However, later her comments suggested that it was the
opportunity for communication within a relationship
that was at the heart of her current experience of loneli-
ness: You can go out with your boyfriend, but you can
speak with your friends, more than your boyfriend; boy-
friends get jealous and angry, friends dont.
Three of the participants identified as most lonely
spoke of wanting a relationship in the context of having
a boyfriend or girlfriend. Each of these individuals
spoke of having experienced a breakdown in such a
relationship. Two participants spoke of how a third-
party friend had become involved with their boyfriend/
girlfriend and how subsequently they had lost both
friendships. A third participant spoke of how the
demands of their relationship had exceeded what they
felt they were able to do and how they believed these
demands fell outside the scope of how they defined
their friendship: T, he had a disability; I couldnt take
his responsibilities, to look after him; I dont want to be
his mum as well as his girlfriend.
The most lonely participants spoke of how difficult
it was to make and keep relationships: You worry you
will lose them. They suggested that its hard to open
up if they are shy; because Im shy I dont go up to
people, I expect them to come to me; its best when
you are introduced to someone else; introduced to
someone who might suit you; everything is hard; just
getting along with people. Three of the six most lonely
participants identified disability as an issue affecting
how they got along with people and an impediment to
the formation of satisfying relationships: its hard to
break in on the group; Ive been picked on because of
my disability; they ignore you; they didnt like me
because I have disability, they saw me black out; the
best place is on the Internet, where they cant see you;
cant see what you look like.
The least lonely participants described their friend-
ships in more dynamic terms than did the lonely partici-
pants: she does anything I want; she comes over; we go
out together; takes me places; calms me down; helps
me when (I) go to him; lets me sleep at his house; you
get invites to parties.
A further characteristic common to participants in the
least lonely group was the apparent connection they
had with the family of their nominated best friend: I
get on with his family; his brothers are like brothers to
me; his family are good too; I keep my troubles to
myself (i.e. not relying on the nominated best friend
for personal or practical assistance), but his family
would help me; I met her at KFC (open employment);
we talk to each other; were getting to know each
others families.
Four of the participants in the least lonely group
identified their best friend to be a person with disabil-
ity. In two instances these were people described in
terms of being an old school friend, one was a current
work mate (in supported employment) and one was a
boyfriend, known through family connections: his
mum is from my mums village (in Italy); I love him
since I was seven (aged 17 at the time of interview). For
the other two people, one nominated their best friend
to be a youth worker in a local church group who takes
me places; calms me down if Im in a bad mood; helps
me solve my problems; I count on him to make me
happy. However, although he was able to identify other
youth leaders at the group, he was unable to identify
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any other peers in the group. The sixth participant nom-
inated his sister who looks after me; looks after my doc-
tors bill; she calls me Stalky. This participant,
though, was unable to name any other person, also
identified The Captain and his wife at the local church
as being among the most important people in his life.
Attending a group associated with the local church was
also an important feature in his social network: you can
make friends everywhere; at church; at Cross Roads;
nowhere else really. For this person having a girlfriend
(who happened to have a disability) was also important,
but apart from naming her, he declined to comment fur-
ther.
Discussion
This study explored loneliness, as experienced by
adults with intellectual disability, and intermittent to
limited support needs (Luckasson et al., 2002). It inclu-
ded piloting a scale to assess loneliness and utilized
qualitative techniques to develop an enhanced under-
standing of the participants experience. It was proposed
an enhanced understanding of the participants perspec-
tive was important to inform support strategies in keep-
ing with their priorities.
The modified Loneliness Scale piloted in the current
study was found to be reliable for use by people with
intellectual disability and intermittent to limited sup-
port needs, in terms of both its internal consistency and
test/re-test reliability. It was also demonstrated to be a
valid measure of loneliness, with moderate correlations
between participants scale scores and observer ratings
of loneliness made by significant others (parents, teach-
ers and work supervisors). Furthermore, when inter-
views were sorted according to the participants
Loneliness Scale scores (most lonely/least lonely), dis-
parate themes were evident which distinguished
between the two groups, in the expected direction. With
some further development (e.g. further validation and
the development of norms), at an individual level, this
scale could be used to assess and monitor loneliness
experienced by adults with disability in receipt of ther-
apy or other services. Furthermore, at a group level, it
could be used to evaluate the effectiveness of pro-
grammes implemented to enhance quality of life
through improving peoples social skills and social net-
works.
For the quantitative analysis, generally demographic
factors (e.g. gender, age, living arrangements, commu-
nity access support needs and, interestingly, relationship
status) were insufficient to explain the participants
Loneliness Scale scores. However, there was some evi-
dence to suggest that those who had previously atten-
ded mainstream schools were less lonely than those
who had previously attended special schools. Similarly,
participants who were employed were less lonely than
those whose primary day activity was TAFE. Future
studies could explore these findings, and in particular
the effect of different educational and vocational options
on peoples post-school/adult social networks and their
subsequent relationships (Riches & Green 2003; Hall
et al. 2005).
Social factors also did not satisfactorily explain the
participants ratings of loneliness. For example, although
there was a significant negative correlation between par-
ticipant ratings of loneliness and the length of time they
reported spending with their friends (i.e. lower ratings
of loneliness were associated with reports of longer time
spent with friends), the analysis did not support a signi-
ficant relationship between ratings of loneliness and
either the mean number of people nominated as part of
the participants social networks, nor the average fre-
quency of contact with those network members. These
results affirm the importance of evaluating peoples
qualitative experience when seeking to understand
friendship and loneliness, and not relying solely on a
quantitative analysis of their social network.
The qualitative analysis added to the quantitative
findings, effectively conveying the participants experi-
ence. The data suggested distinct differences between
the perspectives and experiences of participants whose
Loneliness Scale ratings classified them as most lonely
and those who were classified least lonely. These dif-
ferences included how the two groups described their
friendships and the expectations they had of their
friends, as well as their personal experiences establish-
ing, negotiating and maintaining friendships, and the
subsequent impact of these events on their experience of
loneliness.
While the quantitative analysis did not indicate any
significant association between gender and ratings of
loneliness, this was suggested by the qualitative analy-
sis. All but one of the six loneliest participants were
women. This group described their ideal friend in terms
of a loyal confidant, whom they could trust and with
whom they could talk openly and honestly about prob-
lems. Conversely, all but one of the least lonely partici-
pants were men, who generally described their
friendships in terms of shared activities and practical
support. These descriptions were consistent with gender
stereotypes of friendship identified in the general popu-
lation (Phillips 1981; Cohen & Haberman 1982).
Journal of Applied Research in Intellectual Disabilities 199
2006 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 19, 191203
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All, but one of the most lonely group could identify
a person they would currently call a friend, though
generally contact with their friend was infrequent (e.g.
less than once a month). However, even where contact
was more frequent, they were of the view that their
friend either did not take the relationship seriously or,
while the friendship was important (e.g. a boyfriend or
girlfriend), it failed to meet their full range of socio-
emotional needs. This was in contrast to the least
lonely group, who reported higher frequency of contact
with their friend (e.g. several times a week) and gener-
ally described how their best friend connected them to
others, especially members of their friends family, who
were reported to be an important source of practical
support.
The qualitative analysis suggested that connection (or
lack of connection) with a social network, which could
meet a diversity of emotional and practicals needs, was
a critical factor linked to the participants experience of
loneliness. This is consistent with the assertion that rela-
tionships serve a variety of purposes and therefore, by
necessity, involve a variety of persons (Bayley 1997).
Those who were least lonely described the value of
their network, while the most lonely participants
expressed a longing for these connections, the absence
of which seemed to contribute to their experience of
loneliness. Similarly, the lonely participants related stor-
ies describing a betrayal of trust and/or a breakdown of
honesty in their friendship, which appeared to contrib-
ute to their experience of loneliness. These were indicat-
ive of participants sensitivity to both the social and
emotional dimensions of loneliness, as described for
the general population by Weiss (1973); Russell et al.
(1984) and Andersson et al. (1987).
Consistent with Peplau & Perlman (1982), the qualita-
tive analysis further suggested that those who were
identified as most lonely appeared concerned about an
insufficient level of social interaction or a discrepancy
between the quantity of their social interaction and their
personal expectations. This concern of the participants
was not evident in the quantitative analysis.
The participants in the current study valued both the
social and emotional dimensions of friendship; people
with whom to do things and people with whom they
could be themselves. Where discrepancies between
their expectations and their experiences emerged, they
reported loneliness. It was evident that in addressing
loneliness, it is important to consider fostering connec-
tions that provide for both of these needs. Furthermore,
it was evident that where these needs were effectively
met, participants did not rely on a single significant
other (i.e. a best friend or best buddy). Rather, loneli-
ness was least evident among those who perceived
themselves to be part of a network of people, each
member of which performed a specific function or ful-
filled a specific need; the combined effect of which was
to provide a safeguard against loneliness. This finding is
consistent with the assertions of Pescosolido (2001), who
emphasized the centrality of social networks in the lives
of people with disability.
Based on the comments of the current participants,
personal networks are most effective in meeting peo-
ples social and emotional needs if they include oppor-
tunities for relationships that involve people with and
without intellectual disability. For the current partici-
pants, relationships with family members and profes-
sionals could address some important needs (e.g.
practical support and assistance to solve some prob-
lems). However, relationships with those who had
shared life experiences associated with or linked to their
intellectual disability were also very important. Here,
many of the lonely participants identified difficulties
maintaining such relationships. For this reason, family
members and professionals could provide vital assist-
ance in fostering the continuation of connections
between people with intellectual disability at key transi-
tions in their life: the completion of high school or
TAFE; when leaving a place of employment; or moving
house. Finding their friends telephone numbers, having
support to exchange greetings cards at birthdays and
Christmas, to initiate contact and to extend invitations
to visit or to go out together, and help to identify the
bus or train routes to their friends houses were all high-
lighted by participants as areas where they wanted prac-
tical assistance.
The sample for the current study was purposive, in
so far as adults with intellectual disability were
approached to participate at their place of work or post-
school education; there was no attempt at establishing a
stratified random sample. However all participants met
inclusion criteria, which included a screening protocol
to assess competency to use the Loneliness Scale. Given
the size and structure of the sample caution is warran-
ted in generalizing the quantitative findings to the wider
population of people with disability. This should not be
a major concern with respect to the qualitative analysis
(Guba & Lincoln 1994). However, given that for the qua-
litative analysis the researcher was the instrument of
analysis (Lincoln & Guba 1985), consideration should be
given to the possibility that knowledge that the partici-
pants in the two sub-groups were already classified as
most lonely or least lonely could have influenced the
200 Journal of Applied Research in Intellectual Disabilities
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interpretation of the interviews. Future studies could
address this possibility through the use of third-party
coders, blind to any additional information concerning
participant profiles.
Personal relationships are one of the key areas requi-
ring attention if people with disability are to experience
a quality life as valued members of the community
(McVilly & Rawlinson 1998; Wolfensberger 2000; Rein-
ders 2002). Furthermore, the mission statements of sup-
port organizations commonly suggest that enhancing
the quality of life of people with disability is a priority.
However, in promoting and supporting personal rela-
tionships, and in particular friendships, considerable
work is yet to be done (McLeod et al. 2002; Read 2002).
This work could be more effective if family members
and support professionals had a greater understanding
of the experiences and aspirations of people with intel-
lectual disability. To this end, further research utilizing
a clinical methodology incorporating both quantitative
and qualitative techniques, as used in the current study,
could prove to be of considerable utility.
Correspondence
Any correspondence should be directed to Keith R.
McVilly, CDDS, PO Box 6 Ryde, New South Wales, Aus-
tralia (e-mail: [email protected]).
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