Social support and intellectual disabilities: a comparison between social networks of adults with intellectual disability and those with physical disability

Social support and intellectual disabilities: a comparisonbetween social networks of adults with intellectualdisability and those with physical disability

T. Lippold1 & J. Burns2

1 Surrey and Borders Partnership NHS Foundation Trust, Greenlaws, Guildford, Surrey, UK2 Department of Applied Social and Psychological Development, Canterbury Christ Church University, Salomons, Southborough,TunbridgeWells, Kent, UK

Abstract

Background Social support has been identified as amajor protective factor in preventing mental healthproblems and also as a major contributor to qualityof life. People with intellectual disabilities (ID) havebeen identified as having limited social supportstructures. Interventions have been focused onpromoting their social presence and integration.However, previous studies have shown that thisdoes not always lead to the formation of social rela-tionships. To date few studies have looked at howhaving an ID leads to impoverished social networks.This study aimed to do this by contrasting thesocial relationships of people with physical disabili-ties (PD) and people with ID.Methods Two groups of participants wererecruited; 30 people with mild ID and 17 peoplewith PD. Social and functional support networkswere assessed, in addition to life experiences.Between and within group differences were thenexplored statistically.

Results Adults with ID had more restricted socialnetworks than PD, despite being involved in moreactivities. Social support for adults with ID wasmainly provided by family and carers and few rela-tionships with non-disabled people were identified.In contrast adults with PD had larger social net-works than had been reported in the mainstreamliterature and had a balance of relationships withdisabled and non-disabled people.Conclusions The results suggest that there are addi-tional processes attached to having an ID, whichlead to continued impoverished lifestyles. The find-ings also endorse other work that suggests beingphysically integrated and engaged in a wide rangeof activities does not guarantee good social andemotional support.

Keywords intellectual disability, physical disability,social networks, social support

Introduction

The need to develop and maintain relationshipswith others is of fundamental importance to normalpsychological development and well-being. How-ever, the social and personal relationships taken forgranted by many and which contribute to quality of

Correspondence: Prof Jan Burns, Department of Applied Socialand Psychological Development, Canterbury Christ Church Uni-versity, Salomons, Broomhill Road, Southborough, TunbridgeWells, Kent, TN3 OTG, UK (e-mail: [email protected]).

Journal of Intellectual Disability Research doi: 10.1111/j.1365-2788.2009.01170.x

volume 53 part 5 pp 463–473 may 2009463

© 2009 The Authors. Journal Compilation © 2009 Blackwell Publishing Ltd

mailto:[email protected]

life are often elusive for people with intellectual dis-abilities (ID). Physical presence in the communityis not sufficient of itself to achieve integration in acommunity and people with ID can be marginalisedand ‘often remain, socially, outside looking in’(Myers et al. 1998). Friendships may make the dif-ference between integration and isolation within acommunity (Barber & Hupp 1993), but evidencesuggests that people with ID engage in few friend-ship activities and are more likely to be involved inactivities with friends who also have ID (Emerson& McVilly 2004).

Some authors have argued that a key factor indetermining successful social integration is that offriendship between people with ID and thosewithout ID (Kennedy et al. 1989; Green et al.1995). Such friendships can and do exist (Taylor &Bogdan 1989; Lutfiyya 1991), often emerging out ofan earlier professional or caring relationship, butdespite policies to decrease segregation and improvecommunity presence they remain uncommon.Green & Schleien (1991) suggested that the occur-rence of such friendships might be overestimatedbecause ‘facades of friendship’ are falsely perceivedas ‘true friend’ experiences. Thus friendly overturesand increased social contact are misinterpreted asconstituting friendship by both the intellectuallydisabled and their carers. Many people with ID whoreport having a friend in fact experience a relativelysuperficial relationship more akin to that of anacquaintance (Clegg & Standen 1991; Lunsky 2006)without the expected mutuality and reciprocity.Even when examples of successful friendshipsbetween people with ID and community membershave been identified, many of those with ID have atthe same time been isolated and cut off from thewider community (Flynn 1989; Taylor & Bogdan1989) with limited social networks.

Characteristics of social relationships can be con-sidered in terms of both structure and function.Structure includes the size of the network and othercharacteristics such as homogeneity and its connec-tions, such as density and interactions betweenmembers (Flaherty et al. 1983; Bowling 1997). Func-tion refers to the purpose relationships serve, such aspractical aid or emotional support, and in the case ofpositive social relationships equates to the concept ofsocial support (Lunsky 2006). Compared with non-disabled adults the social networks of adults with ID

have been found to be smaller, with proportionatelyfewer friends, less reciprocity and contain a largeproportion of service providers (Rosen & Burchard1990; Forrester-Jones et al. 2006). For individualswith ID living with parents most of the networkmembers have been found to be other familymembers and networks deeply embedded with thoseof the mother (Krauss et al. 1992).

Social support has been widely researched, par-ticularly the notion that social support acts as abuffer in moderating the potentially negative effectsof stress (Cohen & Wills 1985), although much ofthe research is inconsistent (Alloway & Bebbington1987). A less all-encompassing view of socialsupport holds that it should include perceivedsupport and received support as well as satisfactionwith support (Sarason et al. 1990). Functional char-acteristics of social relationships have been lessoften addressed than structural characteristics in IDresearch (Lunsky 2006). Similar findings to thosein mainstream research have been reported, forexample, that low levels of social support can be avulnerability factor for mental health problems suchas depression (Reiss & Benson 1985; Meins 1993;Nezu et al. 1995) and associations have been foundbetween social strain (the converse of socialsupport) and a range of psychopathology (Lunsky& Havercamp 1999; Cooper et al. 2007). Given thatpeople with ID are particularly dependent on thesupport of others, they may be more adverselyaffected than the general population (Meins 1993).Arguing from the standpoint that social relation-ships are the most essential elements and indicatorsof societal inclusion, Newton et al. (1994) describean individual’s social life in terms of four variables:their personal or social network, social interactions,social stability and social support. The first three ofthese are seen as independent variables that serve toinfluence the amount and type of social support theindividual is able to acquire (Newton et al. 1994).

The social inclusion of people with ID continuesto present a major challenge to services (Forrester-Jones et al. 2006). To understand fully how havingan ID contributes to impoverished social networksand limited availability of social support, it is worthlooking both at the contribution of having a disabil-ity, i.e. being different, and the specific issues thatthe particular disability brings, i.e. the type of dif-ference. The experiences of other disabled, and

464Journal of Intellectual Disability Research volume 53 part 5 may 2009

T. Lippold & J. Burns • Social support and intellectual disabilities


hence potentially disenfranchised groups, can becompared with people with ID. The issues of stigmaand physical or cognitive impairments that combinein the handicapping situation for the individualcannot always be clearly delineated. However,efforts should be made to examine the contributionof each, as appropriate interventions may then bebetter focused.

Differences between the quality of life of groups ofpeople with and without disabilities have been foundacross a range of dimensions including the extent ofsocial networks, opportunities to make choices andactivities experienced (Sands & Kozleski 1994). Inthis case disabilities included both physical disability(PD) and ID. In an early study by Schulz & Decker(1985) participants with major, long-standing PDreported only slightly lower well-being than non-disabled adults and high levels of well-being wereassociated with high levels of social support and highlevels of control. However, there is a scarcity ofstudies that directly compare the social support ofpeople with ID with those with PD.

The aim of the present study was to investigatethe social networks and social support available topeople with ID and compare these with a group ofpeople with PD. It was hypothesised that peoplewith ID would have lower levels of social integra-tion, more restricted social networks and fewersources of social support than those with PD.

Participants

The participants consisted of a group of people withID, their carers who acted as additional informantsand a comparison group of people with PD. Partici-pants with disabilities were recruited from specialistday centres for people with ID. Similarly those withPD were recruited from day centres specifically forpeople with PD; both types of centres were locatedwithin the same geographical area. None of the par-ticipants were in full-time employment. Recruitmentcriteria included the ability to hold a simple conver-sation and being aged between 18 and 60 years. Anadditional exclusion criterion for the PD group wasthe presence of ID. As well as signing a simplifiedconsent form participants in the ID group wererequired to demonstrate understanding of consent,including what the researcher would be talking tothem about and what they could do if they no longer

wished to participate. Acquiescence was assessedwith four questions such as ‘Are you over 60?’(Arscott et al. 1999). One person was excluded atthis stage of the study for failing to understand theconsent and acquiescence questions.

Thirty adults (15 men and 15 women) with mildID participated in the study. They ranged in agefrom 22 to 59 years (mean = 36.7 years). Thirteen(43%) of the participants lived with their family;nine (30%) lived in a staffed home; four (13%) livedin supported living and three (10%) lived indepen-dently. None of the ID group were married, but17 (57%) said they had a boyfriend or girlfriend.The PD group consisted of 17 people, 11 womenand six men, ranging in age from 19 to 58 years(mean = 36.94). Six of the PD group (35%) livedwith their family, four (24%) lived in a staffed homeand seven (41%) lived independently. Five (29%) ofthe PD group were married and three (18%) had agirlfriend or boyfriend.

The additional informant group for the partici-pants with ID was required firstly, because of thelimited number of appropriate tools that could beadministered directly to participants with ID andsecondly in order to triangulate data sources andexplore different perspectives of the validity andreliability of the data. The informant group con-sisted of carers or parents nominated by the partici-pants with ID. While they completed consent forms,their role was not to represent themselves, but torepresent the individual with ID.

Methods

The present study drew upon research conductedin North America on the social support and net-works of people with ID (Lunsky & Benson 1997,1999; Lunsky & Havercamp 1999). Measures werechosen either because they had been specificallydesigned for this population or were appropriatewithout significant adaptation. The key variablesexamined included social support, social networks,functional support and life experiences.

Measures

In recent years it has increasingly been accepted thatpeople with ID should be seen as reliable authoritieson their own lives (Lefort & Fraser 2002) and as far




as possible self-report measures were chosen.TheSocial Support Self Report (SSSR) (Lunsky &Benson 1997) is a self-rated measure of socialsupport.The scale consists of five sub-scales, fourrelating to sources of support (family, staff, friendsand partner) and one a composite of items from theother sub-scales measuring reciprocity. Lunsky &Benson (1997) reported internal consistency of theSSSR ranging from a Cronbach’s alpha of 0.55 to0.85 for the different sources of support and totalscores. Using the SSSR individuals with mild IDreported social support ‘with some consistency,within a measure, across measures and generally inaccordance with staff perceptions’ (Lunsky &Benson 1997, p. 284).The circles task provides avisual representation of a person’s network structure.Antonucci & Akiyama (1987) reported the procedurecapable of generating detailed descriptions of thestructural support characteristics of their sample ofadults aged 50 and over. No psychometric data werereported, however, the technique has been used instudies of older adults and people with ID (Felton &Berry 1992; Krauss et al. 1992).

The Functional Support Inventory (FSI) (Felton& Berry 1992) is a self-rated measure of functionalsupport based on six ‘social provisions’ seen as criti-cal for mental health (Weiss, 1974, cited in Felton &Berry 1992).These are attachment, social integra-tion, reliable alliance, guidance, reassurance of worthand opportunity for nurturance. No information wasreported on the psychometric properties of the FSI.

The Life Experiences Checklist (LEC) (Ager1998), which can be self- or informant rated, isused to evaluate quality of life and assess the rangeand extent of an individual’s life experiences.Norms are available for a general population sample(n = 410). Ager (1998) reported test–retest reliabilityof Cohen’s kappa = 0.93 and inter-rater reliability ofbetween 0.93 and 0.97. Ager (1998) also providedevidence for good construct and predictivevalidity.

Procedure

Individual interviews were conducted with partici-pants with ID at their day centres. After completingconsent and acquiescence questions participantswere given the SSSR, circles task and the FSI.SSSR items were read out and participants given

the options ‘not at all’, ‘sometimes’ and ‘a lot’ ondifferent coloured cards. The circles task consistedof three concentric circles on a sheet of paper, par-ticipants were asked to think about importantpeople in their lives and place them in the inner,middle or outer circle according to their level ofimportance. FSI items were also read to partici-pants. Informants were also seen individually andcompleted demographic details and the LEC onbehalf of the ID participant they knew well. ThePD group were seen either at day centres or athome and administered the SSSR, circles task, FSIand LEC, using the same procedure.

Results

Life experiences

Scores obtained on the LEC were compared withnorms for the general population (Ager et al. 1988)using one-sample t-tests for both the ID group(Table 1) and the PD group (Table 2).

Interestingly, the range and frequency of lifeexperiences as measured by the LEC were largelyshown to be significantly higher for the ID groupthan for the mainstream sample from which thenorms were derived (Ager et al. 1988), the excep-tions to this being within the sub-scale of Freedom,where no significant difference was obtained, andon the Relationships sub-scale, where the ID groupwas found to have statistically significant lowerscores than the norms. It might be expected thatcompared with the general population this group ofpeople with ID would have more impoverished rela-tionships; it might not be expected that overall thequantity of life experiences they encountered washigher than the general population. However, theseresults are not inconsistent with those of the servicereceiving populations cited in the LEC Manual(Ager 1998), which again frequently scored higherthan the normative sample.

In comparison with a more recent study of 85

people with ID living in ordinary housing (Hugheset al. 1996) no significant difference in the LECtotal scores was found although significant differ-ences were found in two domains, with Freedombeing significantly lower in the present study(t = -2.87; P < 0.01) and Opportunities significantlyhigher (t = 2.38; P < 0.05).




The only significant difference found between thePD group and the general population sample on theLEC was for the domain Home, with the PD groupscoring significantly higher (Table 1). Items in thisdomain include ‘My home has central heating’ and ‘Iuse a telephone at home at least once a week’, whichmight reflect a higher financial status.

Comparing the two groups of ID and PD nodifference was found on the LEC total scores,however, the PD group scored significantly loweron the domains Leisure (t = 3.49; P < 0.001) andOpportunities (t = 3.93; P < 0.001) and significantlyhigher on Relationships (t = 2.81; P < 0.001).

Social networks

The 30 ID respondents nominated a total of 350

network members on the circles task, giving a mean

network size of 11.67 members (SD 8.5). Previousstudies using the circles task with older adultsreported mean network sizes of 8.9 (SD notreported) (Antonucci & Akiyama 1987), 5.3 (SD3.4) (Felton & Berry 1992), and with ID adultsliving at home 7.1 (SD 3.7) (Krauss et al. 1992).This suggests that the ID group in this study hadlarger social networks in comparison with previouspublished studies using the same measure. Using adifferent measure, ‘The Social Network Guide’,Forrester-Jones et al. (2006) found that for theirsample of 213 people with ID who had been relo-cated in the community over 12 years, the averagesize of the network was 22 members (SD 9.4). Thisperhaps reflects the impact of the living situation,with all the latter sample living outside of the familyhome, but within services and the length of time inthese situations.

Table 1 LEC: comparison of the ID and PD groups with general population

Range forscale

Ager et al.(n = 410)mean (SD)

ID group(n = 30)mean (SD) t

PD group(n = 17)mean (SD) t

Home 0–10 8.0 (1.9) 8.73 (1.47) 2.80** 9 (1.12) 3.69**Leisure 0–10 4.6 (2.0) 6.33 (1.71) 5.56*** 4.47 (1.84) -0.29Relationships 0–10 6.6 (2.2) 5.27 (1.51) -4.85*** 6.76 (2.11) 0.32Freedom 0–10 8.0 (1.8) 7.73 (1.46) -1.00 8.12 (1.17) 0.42Opportunities 0–10 7.5 (1.6) 8.47 (1.07) 4.93*** 6.76 (1.92) -1.58LEC total 0–50 34.8 (6.6) 36.53 (3.94) 2.41* 35.06 (4.67) 0.23

LEC, Life Experiences Checklist; ID, intellectual disabilities; PD, physical disabilities.* P < 0.05; ** P < 0.01; *** P < 0.001.

Table 2 Composition of support network: ID group

Immfamily*

Extendfamily*

Boy/girlfriend

IDfriends

Otherfriends

Daystaff

Residstaff* Other No.

Inner 49 30 6 20 6 23 4 8 146circle 33.56% 20.54% 4.11% 13.7% 4.11% 15.75% 2.74% 5.48%Middle 7 31 1 31 4 14 7 6 104circle 6.73% 29.8% 0.96% 29.81% 3.85% 13.46% 6.73% 5.77%Outer 8 16 2 27 10 20 6 14 100circle 8% 16% 2% 27% 10% 20% 6% 14%Total 64 77 9 78 20 57 17 28 350network 18.28% 22% 2.57% 22.28% 5.71% 16.28% 4.86% 8%

40.28% 28% 21.14%

ID, intellectual disabilities; imm, immediate; extend, extended; resid, residential.




Family members made up the majority of thesupport network (40.28%) followed by friends(28%) (who were mostly friends with ID) andmembers of staff (21.14%) (Table 3).

The 17 people in the PD group nominated a totalof 521 network members, giving a mean networksize of 30.65 (SD 15.69) (Table 4).

These figures are again larger than previouslypublished data.

Significant differences were found between themedian values for the ID and PD groups for theinner circle (z = -2.81; P < 0.01), middle circle(z = -3.64; P < 0.001), outer circle (z = -2.59;P < 0.01) and entire network (z = -4.36; P < 0.001).In all cases the number of network members citedwas greater for the PD group.These findings supportthe hypothesis that people with ID have morerestricted social networks than people with PD.

Table 4 shows the differences between the twogroups in relation the different types of people in

the social circles. Significant differences were foundin the majority of comparisons. The ID group hadsignificantly more involvement with their familyoverall, but less than the PD group with theextended family. Individuals in the ID group alsohad much more involvement with residential staffthan the PD group. In contrast to the ID group,friends rather than family members made up themajority of the support network for the PD group.Thus, friends made up 43% of the network withalmost equal representation of friends with disabili-ties and friends without disabilities (21.9% and21.1% respectively). Family members made up 38%of the network and staff 10.6%.

Social support

The most frequent providers of functional supportreported by the ID group were members of staff,making up 53.1% of the 322 nominations on the

Table 3 Composition of support network: PD group

Immfamily

Extendfamily

Boy/girlfriend

PDfriends

Otherfriends Day staff

Residstaff Other No.

Inner 47 45 7 18 8 9 0 9 143circle 32.87% 31.49% 4.89% 12.59% 5.59% 6.29% 6.29%Middle 8 36 0 71 47 32 3 14 211circle 3.79% 17.06% 33.65% 22.27% 15.16% 1.42% 6.63%Outer 7 55 0 25 53 11 0 14 167circle 4.19% 32.93% 14.97% 31.74% 6.59% 8.38%Total 62 136 7 114 108 52 3 37 521network 11.9% 26.1% 1.3% 21.9% 21.1% 9.98% 0.57%

38% 43% 10.6% 7.1%

PD, physical disabilities; imm, immediate; extend, extended; resid, residential.

Table 4 Comparison of network membership between the PD and ID groups

Immfamily

Extendfamily

Allfamily

Residstaff

Daystaff

Allstaff

Disfriends

Otherfriends

Allfriends

Z -2.65 -2.99 -3.58 -1.81 -1.12 -0.810 -1.7 -4.67 -4.09Exact Sig (1 tailed) 0.003** 0.001** 0.000*** 0.048* 0.133 0.213 0.045* 0.000*** 0.000***

PD, physical disabilities; ID, intellectual disabilities; imm, immediate; extend, extended; resid, residential; dis, disabled.* P < 0.05; ** P < 0.01; *** P < 0.001.




FSI. The next most frequently nominated groupwere friends (18%) of whom the great majoritywere friends with ID. Family members comprised14.6% of nominations and boy or girlfriends2.8%.

The PD group made 214 nominations for provid-ers of support on the FSI of whom the majoritywere family members (29.9%). The next most fre-quently nominated group were members of staff(28.5%) followed by friends (20.6%). Partnersmade up 7.5% of nominations and ‘others’ 13.5%.

The PD group cited family and friends withoutdisabilities significantly more often than the IDgroup (family: z = -2.89; P < 0.01; friends withoutdisabilities: z = -3.46; P < 0.01). Staff were signifi-cantly more likely to be cited by the ID group thanthe PD group (z = -1.95; P < 0.05).

Self-rated social support was compared withNorth American data obtained from one of theauthors of the SSSR (Lunsky 1997) using one-sample t-tests. The only significant difference foundwas for the support source ‘family’ (t = 2.43, d.f. 29,P < 0.05). The UK sample tended to name morefamily members.

No differences were found between the ID andPD groups for overall self-rated social support. ThePD group reported receiving more social supportfrom their family; otherwise there were no signifi-cant differences between the two groups for thesubsections of the SSSR. This finding was notunexpected, as the PD group had cited more familymembers being involved in their care.

Discussion

The extent of life experiences of the participantswith ID appeared relatively high on three of the fivedomains in comparison with the general populationnorms reported, but consistent with the servicesamples which also scored higher (Ager 1998). Thismay be related to the fact that the participants inthis sample were not in employment but did receiveservices, which engaged them in a range of activitiesthat score on the LEC e.g. ‘I am being taught somenew skills’. In addition, standards of living havegenerally improved since the 1980s when the stan-dardisation data were collected, perhaps demon-strated by the fact that the only significantdifference between this group and the general

sample was on the ‘home’ dimension whichincluded items such as ‘I use a telephone at homeat least once a week’.

The one domain where the ID sample scoredsignificantly lower was on the domain of Relation-ships, which supports the hypotheses of this studyand previous research that people with ID tend tohave restricted social networks. It is interestingthat it was also this domain that was significantlydifferent in the same direction when comparingthe PD and ID groups, suggesting that it is notdisability per se that causes the difference but thetype of disability. That the type of disabilityimpacts on activities in differential ways is alsosupported by the finding that PD groups scoredsignificantly worse on the domains Opportunitiesand Leisure than did the ID group. Looking atthe items this might be related to access e.g. ‘Itravel by car or public transport at least once aweek’, as the majority of the PD participants werein wheelchairs. Also possibly finance, as to be ableto participate in all the activities mentioned in theleisure domain, through independent means i.e.not through services, could prove prohibitivelyexpensive.

This finding demonstrates that it is possible to bevery present and active in the community whiledeveloping and maintaining few relationships otherthan with staff who accompany such activities. AsFirth & Rapley (1990) have argued, often staff canconfuse provision of leisure and recreational activi-ties with social relationships. In addition, noaccount is taken of how individual these activitiesare. For example, going to the cinema might involvea group of 10 people with ID, a factor that may welleffect any integration. There is little evidence that,by themselves, leisure activities are a good way ofextending the social lives of people with ID (Firth& Rapley 1990).

The quality of the social network was determinedby examining both the numbers of people within anetwork and the characteristics of members. Themean network size of 11.7 compares favourably withnetwork sizes reported previously (Krauss & Erick-son 1988; Rosen & Burchard 1990; Dagnan &Ruddick 1997; Robertson et al. 2001). However,considerably larger networks were reported in thework of Forrester-Jones et al. (2004, 2006) whoidentified an average network size of 22 (range




3–51) when 213 individuals with mild or moderateID were interviewed using the Social NetworkGuide. Direct comparison between studies is diffi-cult because of different methodologies and use ofdifferent information sources.

The most significant finding given the underlyinghypothesis of this study was that the PD group hadsignificantly more people in their social circle, andthis was true across the range from close friends toacquaintances, once again supporting the hypothesisthat people with ID have more restricted networksthan people with PD.The finding that the PD groupnominated a mean network size of over 30, wellabove that suggested for the general populationcould be a consequence of not only benefiting fromthe usual networks but also being part of a largeservice network. Many had an acquired disabilityand as a consequence maintained previous networkssupplemented by additional networks resulting fromtheir disability. How representative these data are forthe PD group is unclear, as data on network size forpeople with PD are lacking in the literature.Thereare also few studies that compare different groupsin the same study, one exception being Rosen &Burchard (1990) who also found that their (non-disabled) comparison group had a network size twicethat of the ID group. It would appear that the PDgroup in the present study were more similar to anon-disabled population than to the ID group.

It is also important to examine the compositionof these networks given the ‘faux’ friendships thatcan be reported (Cummins & Lau 2003) and thevalue given to friendships between non-disabledand disabled people (McVilly et al. 2006). Consis-tent with the literature the ID groups reportedmore friendships with other people with ID thanthose without (Forrester-Jones et al. 2006) and alarge proportion of the network consisting of staff(21%) and family (40%). In comparison with thePD network the ID group had significantly moreinvolvement with their immediate family, but less sowith the extended family. They had less friendsoverall than the PD group and those that they didhave tended also to have ID, compared with the PDgroup which was much more balanced, beingequally divided between disabled and non-disabledfriends. The ID group also had much more contactwith staff, particularly day service staff, than the PDgroup.

Together with the results of the social circleassessment this suggests a picture of the PD grouphaving established social friendship networks thatmay well have been added to as a consequence oftheir disability through opening up new contacts.Their families form an important part of theirnetwork and this extends to both immediate andextended family. The ID group, however, havemuch more reliance on their immediate family andstaff within their social circle, few people enter itwho are not family, staff or have ID themselves.This supports the findings of previous studies sug-gesting that the ‘care’ providers are still the mainsource of social contact for people with ID (Rosen& Burchard 1990; Robertson et al. 2001).

Indeed, this was further reinforced by the resultsof the FSI and SSSR which showed that the PDgroup received significantly more support from theirfamily than the ID group, who tended to rely moreon staff and had a larger circle of people whosefunction was to provide support. It might beexpected that if you have fewer friends you may relymore on paid help, but this is also likely to be cir-cular in that the more care needs you have the lesslikely you may be to form other relationships asyour network is populated by carers.

Having to rely mainly on staff for social supportcould mean that the ‘convoy’ (protective layer offamily and friends who surround and support theperson) (Antonucci & Akiyama. 1987) may also beless stable over time, that relationships within it aremore role-prescribed and characterised by less reci-procity. Forrester-Jones et al. (2006) commentingon their findings that networks were dense and thestaff were found to provide most types of supportincluding intimate care concluded that ‘alwayshaving things done “for you and to you” cannotfoster reciprocity’. Having the skills and opportuni-ties to reciprocate are fundamental keys to buildingand maintaining friendships (Sherman et al. 2000),which in turn have been found to provide a protec-tive function in terms of mental health (Wilkinson& Marmot, 2003).

In conclusion, the findings of this study supportprevious findings that people with ID tend to havemore restricted social networks and communitypresence, and the involvement of a range of carersis not sufficient to develop friendship networkscomparable with other people in society. The find-




ings also demonstrate that the type of disability aperson has will affect the social relationships theydevelop and this may be particularly detrimental forpeople with ID. Further research needs to examinewhy this might be so, but it might be hypothesisedthat the extent and the range of care needs mightbe implicated, in addition to the part the actualintellectual deficits play in learning the skills neededto form and maintain such friendships. Stigma alsoundoubtedly has a part to play in the isolation ofpeople with ID, and the effects this can then haveon how authentic and open they can be to newsocial contacts (McVilly et al. 2006). A cautionshould also be added about research and interven-tions in this area which tend to suggest more isbetter, when more mainstream research suggeststhat a small number of prolonged social relation-ships that provide the necessary level of intimacy isof greater protective value (Cohen et al. 2000). Thismight suggest a focus not on increasing opportuni-ties but on identifying existing or potential criticalrelationships and ensuring these are fostered, assuggested by Cummins & Lau (2003).

Acknowledgements

We wish to thank the participants and day centrestaff for giving their time to the study. We are alsograteful to Yona Lunsky for her support andencouragement.

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Accepted 18 February 2009




Documents

Social support and intellectual disabilities: a comparison between social networks of adults with intellectual disability and those with physical disability