Journal of Applied Research in Intellectual Disabilities 2006, 19, 191203

I Get by with a Little Help from my Friends: Adults with Intellectual Disability Discuss Loneliness1
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 experienced by adults with intellectual disability, with intermittent to limited support needs. Method A measure of loneliness was piloted, and qualitative techniques used to develop a greater understanding of the participants experience. Results The Loneliness Scale proved valid and reliable and the participants reported loneliness in ways comparable with the general population. Conclusions The ndings 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, recommendations are made concerning the issues and types of support families and professionals could consider when seeking to assist people with intellectual disability address loneliness. Further investigation of the effects of differing educational and vocational opportunities 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 inuencing a persons quality of life (Kennedy & Itkonen 1996). In support of this, the literature documents how relationships provide practical aid, emotional support, information, assistance with decision making, and opportunities to broaden existing support networks (Hughes 1999), as well as important safeguards against stress and psychological illness (Duck 1991). The literature further documents specic mental and physical health benets associated with the development of interpersonal networks, and the adverse consequences associated with having poor social networks and the experience of loneliness (Lynch 1977; Bloom et al. 1978; Flynn 1989; Stanfeld 1999).
This paper is based on the Doctoral Research of Keith R. McVilly, and partly funded by an Australian Postgraduate Award, in the Faculty of Medicine, University of Sydney. 2006 BILD Publications
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Service providers and policy makers need to be conscious that, for many people with disability, signicant 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 important 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 networks could be signicant factors contributing to psychopathology (e.g. depression and anxiety), manifest as challenging behaviour (Lunsky & Havercamp 1999; McVilly 2002). To put the experiences of people with intellectual disability into perspective, and to highlight the potential for loneliness to be a signicant factor inuencing their quality of life, Katz & Yekutiel (1974) reported that 61% of graduates from an adult training programme had no
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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 residences. Barber & Hupp (1993) reported people living in smaller groups to have larger social networks and concluded that the size of the social networks of those living 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 infrequently. These ndings 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 ndings from a large population-based study which indicated 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 ndings also suggested that the settings in which participants lived were more signicant determinants of the form and content of friendship activities, than the participants personal characteristics (i.e. skills and behaviours). It is therefore evident that, although many people with developmental disability are at least more physically 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 isolation 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 intellectual disability conceptualize this and what would they like to do about it? Peplau & Perlman (1982) have dened loneliness in terms of an unpleasant experience arising from insuf-

cient social interaction. They further assert that it is essentially a personal (subjective) experience, independent of either the quantity or duration of social interaction. For this reason, loneliness can be understood to reect a discrepancy between an individuals expectations concerning relationships and his or her interpretation of their own social experience. Andersson et al. (1987), consistent with Weiss (1973) and Russell et al. (1984), have dened loneliness as two separate, but inter-related dimensions. The rst is the social dimension, arising as a result of the persons experience of deciencies 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 perceived lack of meaningful and rewarding socio-emotional 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. However, 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 describe feelings of both aloneness and sadness in response to the question Do you know what being lonely means?, with the remaining 7% providing a satisfactory description of aloneness, but not sadness. Williams & Asher (1992) reported success in measuring 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 intellectual disability. Similarly, Petrovski & Gleeson (1997), using standardized measures, reported that adults with mild intellectual disability did not appear to experience difculties relating their experiences of loneliness. They found a moderate negative correlation between selfreported 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 disability. Heiman (2001) further reported an association between self-reported ratings of loneliness and selfreported ratings of depression. Although it appears possible to use standardized instruments to measure loneliness in people with intellectual disability, such an approach is limited in that it

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superimposes on the assessment process the researchers preconceived ideas of how the participants will conceptualize and describe their experience. This quantitative approach is useful for testing established theory. However, standardized questionnaires alone are insufcient 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 potential 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). Furthermore, harnessing qualitative techniques is in keeping with the growing recognition of the importance of listening to people with disability relate their own experiences, 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 construct 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 inuence or explain the participants experience of loneliness. 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.

specic life domains (Luckasson et al., 2002). This was established with reference to a combination of individual records and by assessment using the Scales of Independent BehaviourRevised (Bruininks et al. 1996). All were verbal and none had a physical or sensory disability. 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 assessment).

Instrumentation
Participant data were collected in two ways: a Loneliness 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 questionnaire for parents, teachers and work supervisors.

The Loneliness Scale

The original version of the Loneliness Scale was developed for use with children (Asher & Wheeler 1985). The current adaptation used the 15 core loneliness questions. However, items were modied to read as rst person statements and to better reect 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 modied, extending the original three-point scale (Yes, No or Sometimes) to a ve-point scale, (Never, Rarely, Sometimes, Usually and Always). In addition, the response format was modied from a verbal report, to incorporate a card-sort exercise and a visual analogue scale. These modications 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 ve categories, with each of the descriptions augmented by ticks (Never no tick to Always XXXX). At each of the ve points, the A4 landscape sheet was perforated by a metal le fastener, providing a spike on which response cards (hole-

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 identied conceptual, social or practical skills in

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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, the respondent was asked How often does this sound like you?. The card was then read aloud and handed to the respondent. Respondents were cued with a consistent moving hand gesture to select one of the response categories. Where respondents exhibited difculty, two forms of assistance were offered; rst, verbatim repetition of the question; and second, where they still exhibited difculty, a standard rephrasing, How much does this sound like you; how many ticks would you give it: ? (Sigelman et 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, ve items were phrased such that higher ratings were indicative 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. Subsequently, 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 ndings of a series of focus groups consisting of adults with intellectual disability (McVilly 2004). There were seven key areas of questioning: personal prole and demographics (conrmed by parents, teachers and work supervisors); daily activities and occupation; personal networks; contact with people considered a friend; background to individual friendships; description of a best friend; reections on friendship experiences overall, including loss and/or absence of friendships.

Tasmania Human Research Ethics Committee. Participants at TAFE colleges were contacted via the Teacher Consultant in disability at each of ve colleges, and participated 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 Modied Loneliness Scale. Of these, 16 (31%) participants volunteered to repeat the questionnaire, approximately 2 weeks later. None reported any signicant adverse life events in the intervening period. All respondents were then invited to participate in an interview about friendship issues. Subsequently, 32 (63%) volunteered for the in-depth interview. 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. Signicant 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, conducted as part of the wider study of friendship issues. Data were analysed using both deductive and inductive 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 Comparative Method (Lincoln & Guba 1985). The themes were then used to develop both a descriptive and an explanatory narrative about the phenomenon of loneliness from the participants perspective. Direct quotations were used to elucidate the themes, with minimal paraphrasing used only in the interests of clarity. The thematic interpretations were in turn validated with reference to a focus group of adults with intellectual disability (McVilly 2004).

Results The Modied Loneliness Scale Psychometric properties of the scale

Participants scores on the Modied Loneliness Scale ranged between 0 and 47 (M 18.04; SD 10.41). Reliability of the scale total score was rst explored using split-half (odd/even) reliability analysis, a measure of

Procedures
Approval was provided by both the University of Sydney Human Research Ethics Committee and the University of

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Table 1 Correlations (Pearsons r) between the characteristics of participants (n 51) and their ratings of loneliness (and associated P-values)

School history (special ed./ mainstream)

Relationship between ratings of loneliness and participant characteristics

Self-reported ratings of loneliness were investigated in relation to the participants characteristics, using multiple regression, with the Loneliness Scale score as the dependent variable. Independent variables were participant 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 relationship status (single or couple). The analysis indicated no problems with collinerarity among any of the independent variables. Correlations (Pearsons r) between the variables 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 mainstream school (M 16.03; SD 10.06). Participants whose primary day activity was TAFE reported higher levels of loneliness (M 20.93; SD 11.08) than those whose primary day activity was employment (M 14.23; SD 8.22). There were no statistically signicant relationships evident between reported levels of loneliness

Living arrangements (family/independent)

0.06 (0.34)

0.30 (0.02)

0.08 (0.29) )0.03 (0.43) )0.02 (0.44) 0.02 (0.45)

)0.12 (0.20)

0.23 (0.06)

Gender (male/female)

Age (months)

0.65 (0.00)

)0.42 (0.00)

Self-reported rating of loneliness

0.11 (0.23) )0.15 (0.16) )0.22 (0.07)

)0.29 (0.02)

)0.33 (0.01)

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Self-reported rating of loneliness Gender (male/female) Age (months) Living arrangements (family/ independently) School history (special ed./ mainstream) Primary day activity (TAFE/employed) Community access (supported/independent) Relationship status (single/couple)

)0.14 (0.17)

)0.03 (0.43)

0.05 (0.38) 0.05 (0.37)

0.13 (0.19)

0.17 (0.12)

0.20 (0.08)

)0.04 (0.39)

0.02 (0.46)

0.09 (0.27)

internal consistency. The Guttman split-half coefcient (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 was further 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 pairedsamples t-test indicated that there was no signicant difference between participants total scores on the rst (M 17.69; SD 8.43) and those on the second administration [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 signicant difference in the Loneliness Scale scores for participants identied by proxies as lonely (M 26.71; SD 11.03) and those identied as not lonely (M 16.86; SD 5.95, t(19) )2.69, P 0.01). Additional conrmation of the ecological validity of the scale was evident in the analysis of the semi-structured interviews, discussed later.

Relationship status (single/couple)

Community access (supported/ independent)

Primary day activity (TAFE/employed)

0.02 (0.46)

0.07 (0.33)

0.13 (0.18)

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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 commonly lived independent of their family, and those living 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 signicance. However, there was a signicant, 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). In addition to the relationship between participant characteristics and ratings of loneliness, there was a signicant positive correlation between the number of people nominated by participants as friends and the number of leisure activities they identied (r 0.35, P < 0.05). Moreover, there was a signicant 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).

groups, each consisting of six participants, were identied. A summary of participant proles for the most lonely and least lonely groups are provided in Table 3. Not surprisingly, the mean self-reported rating of loneliness for the most lonely group (M 34.50; SD 8.09) was signicantly 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 reections on friendship experiences.

Participant networks and contacts with friends

Each participant identied as most lonely was able to nominate a person they would call a friend. They generally 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 discrepancy 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 person 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 signicant relationships with other people with disability: we both have a disability; we both know what it is like to have a disability; she nds it hard to get friends; hes just like me, has a disability; but different, Im goofy and hes quiet. These individuals suggested that after leaving school, making friends was difcult, 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 identied a person without disability as a friend both spoke of their friendships having been

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
Table 2 Correlations (Pearsons r) between occupational and social factors reported by participants (n 51) and their selfreported ratings of loneliness Day-time occupation Study days per week Working days per week Social network No. of people identied Mean frequency of contact Mean duration of contact No. of activities identied Mean frequency of activities Mean duration of activities

0.12 )0.25 )0.21 )0.15 )0.44* 0.21 0.00 0.13

Positive correlations are associated with participant ratings indicating HIGHER levels of loneliness; *P < 0.05.

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Table 3 Summary of participant proles for the most lonely and least lonely groups

Group 1 most lonely Gender One male Five Females Age 1731 years (M 21 years 10 months) SIB-R scores Broad Independence 13 to 54 (M 45.75) Support Level Score 76 to 82 (M 79.25) Support Category Intermittent Communication skills All could speak in sentences None used Augmentative & Alternative Communication (AAC) techniques Living arrangements All six living with parents

Group 2 least lonely

Five males One female 1751 years (M 27 years 5 months) Broad Independence 38 to 58 (M 48.60) Support Level Score 57 to 82 (M 71.00) Support Category Intermittent All could speak in sentences None used Augmentative & Alternative Communication (AAC) techniques Four living with parents One living with partner One living in group home Five were employed One attending TAFE Five were single One with a partner Two to 15 signicant others (M 6.67) Three to six social activities (M 4.83)

Day activities One was employed Five attending TAFE Social circumstances All were single Two to seven signicant others (M 4.33) Three to seven social activities (M 5.33)

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 prevent 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 distinct, 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 reections 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 condante and

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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. However, this exclusive and relatively long-standing relationship did not seem satisfying. She stated: I want more friends; the more you nd 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 loneliness: You can go out with your boyfriend, but you can speak with your friends, more than your boyfriend; boyfriends get jealous and angry, friends dont. Three of the participants identied 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 thirdparty 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 dened 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 difcult 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 identied 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 friendships in more dynamic terms than did the lonely participants: 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 identied their best friend to be a person with disability. 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 nominated his sister who looks after me; looks after my doctors bill; she calls me Stalky. This participant, though, was unable to name any other person, also identied 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 further.

Discussion
This study explored loneliness, as experienced by adults with intellectual disability, and intermittent to limited support needs (Luckasson et al., 2002). It included piloting a scale to assess loneliness and utilized qualitative techniques to develop an enhanced understanding of the participants experience. It was proposed an enhanced understanding of the participants perspective was important to inform support strategies in keeping with their priorities. The modied Loneliness Scale piloted in the current study was found to be reliable for use by people with intellectual disability and intermittent to limited support 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 signicant others (parents, teachers and work supervisors). Furthermore, when interviews were sorted according to the participants Loneliness Scale scores (most lonely/least lonely), disparate 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 therapy or other services. Furthermore, at a group level, it could be used to evaluate the effectiveness of programmes implemented to enhance quality of life through improving peoples social skills and social networks. For the quantitative analysis, generally demographic factors (e.g. gender, age, living arrangements, community access support needs and, interestingly, relationship status) were insufcient to explain the participants

Loneliness Scale scores. However, there was some evidence to suggest that those who had previously attended 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 ndings, 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 signicant negative correlation between participant 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 signicant relationship between ratings of loneliness and either the mean number of people nominated as part of the participants social networks, nor the average frequency of contact with those network members. These results afrm 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 ndings, effectively conveying the participants experience. The data suggested distinct differences between the perspectives and experiences of participants whose Loneliness Scale ratings classied them as most lonely and those who were classied least lonely. These differences included how the two groups described their friendships and the expectations they had of their friends, as well as their personal experiences establishing, negotiating and maintaining friendships, and the subsequent impact of these events on their experience of loneliness. While the quantitative analysis did not indicate any signicant association between gender and ratings of loneliness, this was suggested by the qualitative analysis. All but one of the six loneliest participants were women. This group described their ideal friend in terms of a loyal condant, whom they could trust and with whom they could talk openly and honestly about problems. Conversely, all but one of the least lonely participants were men, who generally described their friendships in terms of shared activities and practical support. These descriptions were consistent with gender stereotypes of friendship identied in the general population (Phillips 1981; Cohen & Haberman 1982).

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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 socioemotional 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 generally 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 relationships 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 stories describing a betrayal of trust and/or a breakdown of honesty in their friendship, which appeared to contribute to their experience of loneliness. These were indicative 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 qualitative analysis further suggested that those who were identied as most lonely appeared concerned about an insufcient 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 connections 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 signicant

other (i.e. a best friend or best buddy). Rather, loneliness was least evident among those who perceived themselves to be part of a network of people, each member of which performed a specic function or fullled a specic need; the combined effect of which was to provide a safeguard against loneliness. This nding 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 peoples social and emotional needs if they include opportunities for relationships that involve people with and without intellectual disability. For the current participants, relationships with family members and professionals could address some important needs (e.g. practical support and assistance to solve some problems). 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 identied difculties maintaining such relationships. For this reason, family members and professionals could provide vital assistance in fostering the continuation of connections between people with intellectual disability at key transitions 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 highlighted by participants as areas where they wanted practical 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 postschool education; there was no attempt at establishing a stratied 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 warranted in generalizing the quantitative ndings 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 qualitative analysis the researcher was the instrument of analysis (Lincoln & Guba 1985), consideration should be given to the possibility that knowledge that the participants in the two sub-groups were already classied as most lonely or least lonely could have inuenced the

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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 proles. Personal relationships are one of the key areas requiring attention if people with disability are to experience a quality life as valued members of the community (McVilly & Rawlinson 1998; Wolfensberger 2000; Reinders 2002). Furthermore, the mission statements of support organizations commonly suggest that enhancing the quality of life of people with disability is a priority. However, in promoting and supporting personal relationships, 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 intellectual 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, Australia (e-mail: kmcvilly@med.usyd.edu.au).

References
Amado A. (ed.) (1993) Friendships and Community Connections between People with and without Developmental Disability. Paul H. Brookes, Baltimore, MD. Amado A. (2004) Lessons learned about promoting friendship. Connections 30, 812. Andersson L., Mullins L. & Johnson D. (1987) Parental intrusion versus social isolation: a dichotomous view of the sources of loneliness. Journal of Social Behaviour and Personality 2, 125134. Asher S. & Wheeler V. (1985) Childrens loneliness: a comparison of neglected and rejected peer status. Journal of Consulting and Clinical Psychology 53, 500505. Asher S., Hymel S. & Renshaw P. (1984) Loneliness in children. Child Development 55, 14561464. Australian Bureau of Statistics (ABS) (1997) How Australians Use their Time. ABS, Canberra. Azmi S., Hatton C., Emerson E. & Caine A. (1997) Listening to adolescents and adults with intellectual disabilities from South Asian communities. Journal of Applied Research in Intellectual Disabilities 10, 250263. Bayley M. (1997) What Price Friendship: Encouraging the Relationships of People with Learning Difculties. Hexagon Publishing, Wootton Courtenay.

Barber D. & Hupp S. (1993) A comparison of friendship pattens of individuals with developmental disability. Education and Training in Mental Retardation 28, 1322. Barnes C. (1992) Qualitative research: valuable or irrelevant? Disability, Handicap and Society 7, 115124. Biklen S. & Moseley C. (1988) Are you retarded? No, Im Catholic: qualitative methods in the study of people with severe handicaps. Journal of the Association of Severely Handicapped 13, 155162. Bloom B., Asher S. & White S. (1978) Marital disruption as a stressor. Psychological Bulletin 85, 867894. Blum R., Resnick M., Nelson R. & St Germaine A. (1991) Family and peer issues among adolescents with spina bida and cerebral palsy. Pediatrics 88, 280285. Brantlinger E., Klingner J. & Richardson V. (2005) Importance of experimental as well as empirical qualitative studies in special education. Mental Retardation 43, 92119. Bruininks R., Woodcock R., Weatherman R. & Hill B. (1996) Scales of Independent BehaviourRevised. Riverside Publishing, Chicago, IL. Cassidy J. & Asher S. (1992) Loneliness and peer relations in young children. Child Development 63, 350365. Chadsey-Rusch J., DeStefano L., OReilly M., Gonzalez P. & Collet-Klingengerg L. (1992) Assessing the loneliness of workers with mental retardation. Mental Retardation 30, 85 92. Cohen S. & Haberman H. (1982) Positive Events and Social Supports as Buffers on Life Change Stress: Maximising the Prediction of Health Outcome. University of Oregon Press, Corvallis, OR. Dattilo J., Hoge G. & Malley S. (1996) Interviewing people with mental retardation: validity and reliability strategies. Therapeutic Recreation Journal 30, 163178. Duck S. (1991) Understanding Relationships. The Guilford Press, New York. Duvdevany I. & Arar E. (2004) Leisure activities, friendships and quality of life of persons with intellectual disability: foster homes vs community residential settings. International Journal of Rehabilitation Research 27, 289296. Emerson E. & McVilly K. (2004) Friendship activities of adults with learning disabilities in supported accommodation. Journal of Applied Research in Intellectual Disabilities 17, 17. Fleming I. & Stenfert-Kroese B. (1990) Evaluation of a community care project for people with learning difculties. Journal of Mental Deciency Research 34, 451464. Flynn M. (1989) The social environment. In: Making Connections (eds A. Brechin & J. Walmsley). Hodder & Stoughton, London. Froese P., Richardson M., Romer L. & Swank M. (1999) Comparing opinions of people with developmental disabilities and signicant persons in their lives using the Individual Supports Identication System (ISIS). Disability and Society 14, 831843. Goodley D. (1996) Tales of hidden lives: a critical examination of life history research with people who have learning difculties. Disability and Society 3, 333348.

2006 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 19, 191203

202 Journal of Applied Research in Intellectual Disabilities

Guba E. & Lincoln Y. (1994) Competing paradigms in qualitative methods. In: Handbook of Qualitative Research (eds N. Denzin & Y. Lincoln), pp. 105117. Sage Publications, Thousand Oaks, CA. Hall I., Strydom A., Richards M., Hardy R., Bernal J. & Wadsworth M. (2005) Social outcomes in adulthood of children with intellectual impairment: evidence from a birth cohort. Journal of Intellectual Disability Research 49, 171182. Halpern A., Close D. & Nelson D. (1986) On My Own: The Impact of Semi-independent Living Programmes for Adults with Mental Retardation. Paul H. Brookes, Baltimore, MD. Heenan D. (2002) It wont change the world, but it turned my life around: participants views on the Personal Advisor scheme in the New Deal for Disabled People. Disability and Society 17, 383401. Heiman T. (2001) Depressive mood in students with mild intellectual disability: students reports and teachers evaluations. Journal of Intellectual Disability Research 45, 526534. Heiman T. & Margalit M. (1998) Loneliness, depression and social skills among students with mild mental retardation in different educational settings. Journal of Special Education 32, 154163. Hill B., Rotegard L. & Bruininks R. (1984) The quality of life of mentally retarded people in residential care. Social Work 29, 275281. Hughes A. (1999) Befriending: a note of caution. British Journal of Learning Disabilities 27, 8892. Johnson J. (2000) The Aspirations of People with a Disability within an Inclusive Victorian Community. A Report Prepared by Millward Brown & Associates for the Department of Health Services (DisAbility Services Programme). DisAbility Services, Melbourne. Katz S. & Yekutiel E. (1974) Leisure time problems of mentally retarded graduates of training programmes. Mental Retardation 2, 5457. Kennedy C. & Itkonen T. (1996) Social relationships, inuential variables and chance across the lifespan. In: Positive Behavioural Support: Including People with Difcult Behaviour in the Community (eds L. Koegel, R. Koegel & G. Dunlap), Section iii. Paul H. Brookes, Baltimore, MD. Kitchin R. (2000) The researched opinions of research: disabled people and disability research. Disability and Society 15, 2547. Knox M. & Hickson F. (2001) The meaning of close friendships: the views of four people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 14, 276291. Knox M., Monk M. & Parmenter T. (2000) Working with the experts: collaborative research with people with an intellectual disability. Disability and Society 15, 4961. Krauss M., Seltzer M. & Goodman S. (1992) Social support networks of adults with mental retardation who live at home. American Journal on Mental Retardation 96, 432441. Lincoln Y. & Guba E. (1985) Naturalistic Inquiry. Sage Publications, Newbury Park, CA.

Lowe K. (1992) Community based service: what consumers think. British Journal of Mental Subnormality 38, 614. Luckasson R., Borthwick-Duffy S., Buntinx W., Craig E., Coulter D., Schalock R., Snell M., Spitalnick D., Reeve A., Spreat S. & Tasse M. (eds) (2002) Mental Retardation: Denition, Classication and Systems of Support, 10th edn. American Association on Mental Retardation (AAMR), Washington, DC. Lunsky Y. & Havercamp S. (1999) Distinguishing low levels of social support and social strain: implications for dual diagnosis. Mental Retardation 104, 200204. Lynch (1977) The Broken Heart: Medical Consequences of Loneliness. Basic Books, New York. Marcoen A. & Brumagne M. (1985) Loneliness among children and young adolescents. Developmental Psychology 21, 1025 1031. McLeod J., Stewart G. & Robertson M. (2002) Community Inclusion Enhancing Friendship Networks among People with a Cognitive Impairment. A Report Commissioned by the Department of Health Services, Victoria. DisAbility Services, Melbourne. McVilly K. (1995) Interviewing people with a learning disability about their residential service. British Journal of Learning Disabilities 23, 138142. McVilly K. (2002) Positive Behaviour Support for People with Intellectual Disability: Evidence-based Practice Promoting Quality of Life. Australian Society for the Study of Intellectual Disability, Sydney. McVilly K. (2004) I Get by with a Little Help from my Friends. Doctoral Dissertation, University of Sydney, Sydney. McVilly K. & Rawlinson R. (1998) Quality of life: issues in the development and evaluation of services for people with intellectual disability. Journal of Intellectual and Developmental Disability 23, 199218. ODay B. & Killeen M. (2002) Research on the lives of persons with disabilities: the emerging importance of qualitative research methodologies. Journal of Disability Policy Studies 13, 915. Pearson V., Wong Y. & Pierini J. (2002) The structure and content of social inclusion: voices of young adults with learning difculties in Guangzhou. Disability and Society 17, 365382. Peplau L. & Perlman D. (1982) Perspectives on loneliness. In: Loneliness: A Source Book of Current Theory, Research and Therapy (eds L. Peplau & D. Perlman), pp. 118. Wiley, New York. Pescosolido B. (2001) The role of social networks in the lives of persons with disabilities. In: Handbook of Disability Studies (eds G. Albrecht, K. Seelman & M. Bury) pp. 468489. Sage Publications, Thousand Oaks, CA. Petrovski P. & Gleeson G. (1997) The relationship between job satisfaction and psychological health in people with an intellectual disability in competitive employment. Journal of Intellectual and Developmental Disability 22, 199211. Phillips S. (1981) Network characteristics related to the wellbeing of normals: a comparative base. Schizophrenia Bulletin 7, 117123.

2006 BILD Publications, Journal of Applied Research in Intellectual Disabilities, 19, 191203

Journal of Applied Research in Intellectual Disabilities 203

Rapley M. & Beyer S. (1996) Daily activity, community participation and quality of life in an ordinary housing network. Journal of Applied Research in Intellectual Disabilities 9, 3139. Read G. (2002) Issues Arising from 43 Quality Network Reviews. The Quality Network. The British Institute of Learning Disabilities (BILD), Kidderminister. Reinders J. (2002) The good life for citizens with intellectual disability. Journal of Intellectual Disability Research 46, 15. Rice P. & Ezzy D. (1999) Qualitative Research Methods: A Health Focus. Oxford University Press, Melbourne. Riches V. & Green V. (2003) Social integration in the workplace for people with disabilities: and Australian perspective. Journal of Vocational Rehabilitation 19, 127142. Russell D., Cutrona C., Rose J. & Yurko K. (1984) Social and emotional loneliness: an examination of Weiss typology of loneliness. Journal of Personality and Social Psychology 46, 1313 1321. Schwandt T. (1994) Constructivist, interpretivist approaches to human enquiry. In: Handbook of Qualitative Research, Part 2 (eds N. Denzin & Y. Lincoln), Part 2. Sage Publications, Thousand Oaks, CA.

Sigelman C., Schoenrock C., Budd E., Winer J., Spanhel C., Martin P., Hromas S. & Bensberg G. (1983) Communicating with Mentally Retarded Persons: Asking Questions and Getting Answers. Research and Training Centre in Mental Retardation, Texas Technical University, Lubbock, TX. SPSS (2003) Statistical Package for Social Sciences, Version 12 [Computer software]. SPSS, Chicago, IL. Stanfeld S. (1999) Social support and social cohesion. In: Social Determinants of Health (eds M. Marmot & R. Wilkinson), pp. 155178. Oxford University Press, Oxford. Strully J. & Strully C. (1985) Teach your children. The Canadian Journal on Mental Retardation 35, 311. Weiss R. (1973) Loneliness: The Experience of Emotional and Social Isolation. MIT Press, Cambridge, MA. Williams G. & Asher S. (1992) Assessment of loneliness at school among children with mild mental retardation. American Journal on Mental Retardation 96, 373385. Wolfensberger W. (2000) A brief overview of Social Role Valorization. Mental Retardation 38, 105123.

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