Abstract
Background: Despite the importance of social networks for health and well-being, relatively little is known about the ways in which adults with intellectual disabilities in the U.K. experience their social networks. Method: A systematic review was completed to identify research focused on the social networks of adults with intellectual disabilities. Studies published from 1990 to 2019 were identified. Studies were thematically analysed. Results: Quantitative, qualitative and mixed methods studies were analysed to identify key factors influencing social networks. Experiences of people with intellectual disabilities identified themes of identity, powerlessness, inclusion, family and support. These themes are discussed with reference to theories of stigma and normalisation. Conclusions: Stigma and normalisation can be used to better understand the needs, desires and dreams of people with intellectual disabilities for ordinary relationships, from which they are regularly excluded. Implications for policy and practice are discussed in relation to building and repairing often spoiled identities.
| Original language | English |
|---|---|
| Pages (from-to) | 973-992 |
| Number of pages | 20 |
| Journal | Journal of Applied Research in Intellectual Disabilities |
| Volume | 34 |
| Issue number | 4 |
| Early online date | 17 Mar 2021 |
| DOIs | |
| Publication status | Published - 31 Jul 2021 |
Bibliographical note
Funding Information:Sixteen of the studies reported on quantitative research, six on qualitative and five were mixed methods studies (see Tables 1 and 2). All but two studies (Emerson, 2004; Emerson & McVilly, 2004) measured network size, but often in different ways. Other studies used social networks to evaluate interventions (Donnelly et al. 1997; Hamilton et al., 2017; Robertson et al., 2007); mental health (Hulbert-Williams et al., 2011); the needs and views of caregivers (Heyman et al., 1997; Prosser & Moss, 1996); or compared people who had intellectual disabilities with people who had physical disability (Lippold & Burns, 2009). A consideration of the factors which influenced social networks is now presented. Firstly, quantitative studies will be examined, including the quantitative aspects of the mixed methods studies. These are followed by a thematic analysis of the qualitative studies, including the qualitative aspects of the mixed methods studies. Bhardwaj et al. (2018) QATSSD score: Good Cooper (1998) QATSSD score: High n?=?207 consisting n?=?134 aged 65+ n?=?73 aged 20?64 Dagnan and Ruddick (1997) QATSSD score: Poor Donnelly et al. (1997) QATSSD score: Good Emerson, E., Robertson, J., Gregory et al. (2000) QATSSD score: Good Emerson et al. (2001) QATSSD score: Good Emerson and McVilly (2004) QATSSD score: Good Emerson (2004) QATSSD score: Good Forrester-Jones et al. (2004) QATSSD score: Good Forrester-Jones et al. (2006) QATSSD score: Good Grant (1973, 1993) QATSSD score: Moderate Gregory et al. (2001) QATSSD score: Good Hamilton et al. (2017) QATSSD score: Good Head et al. (2018) QATSSD score: Good Heyman et al. (1997) QATSSD score: Good Hulbert-Williams et al. (2011) QATSSD score: Good Jahoda et al. (1990) QATSSD score: Good Lippold and Burns (2009) QATSSD score: Good McConkey et al. (2003) QATSSD score: Moderate Murphy et al. (2017) QATSSD score: Good Perry et al. (2011) QATSSD score: Good Power and Bartlett (2019) QATSSD score: Good Prosser and Moss (1996) QATSSD score: Moderate Robertson et al. (2001) QATSSD score: High Robertson et al. (2007) QATSSD score: High Sango and Forrester-Jones (2018) QATSSD score: High The Money, Friends, and Making Ends Meet Research Group c/o Tilly. L. (2012) QATSSD score: High Sixteen of the studies reported on quantitative research, six on qualitative and five were mixed methods studies (see Tables 1 and 2). All but two studies (Emerson, 2004; Emerson & McVilly, 2004) measured network size, but often in different ways. Other studies used social networks to evaluate interventions (Donnelly et al. 1997; Hamilton et al., 2017; Robertson et al., 2007); mental health (Hulbert-Williams et al., 2011); the needs and views of caregivers (Heyman et al., 1997; Prosser & Moss, 1996); or compared people who had intellectual disabilities with people who had physical disability (Lippold & Burns, 2009). A consideration of the factors which influenced social networks is now presented. Firstly, quantitative studies will be examined, including the quantitative aspects of the mixed methods studies. These are followed by a thematic analysis of the qualitative studies, including the qualitative aspects of the mixed methods studies. Bhardwaj et al. (2018) QATSSD score: Good Cooper (1998) QATSSD score: High n?=?207 consisting n?=?134 aged 65+ n?=?73 aged 20?64 Dagnan and Ruddick (1997) QATSSD score: Poor Donnelly et al. (1997) QATSSD score: Good Emerson, E., Robertson, J., Gregory et al. (2000) QATSSD score: Good Emerson et al. (2001) QATSSD score: Good Emerson and McVilly (2004) QATSSD score: Good Emerson (2004) QATSSD score: Good Forrester-Jones et al. (2004) QATSSD score: Good Forrester-Jones et al. (2006) QATSSD score: Good Grant (1973, 1993) QATSSD score: Moderate Gregory et al. (2001) QATSSD score: Good Hamilton et al. (2017) QATSSD score: Good Head et al. (2018) QATSSD score: Good Heyman et al. (1997) QATSSD score: Good Hulbert-Williams et al. (2011) QATSSD score: Good Jahoda et al. (1990) QATSSD score: Good Lippold and Burns (2009) QATSSD score: Good McConkey et al. (2003) QATSSD score: Moderate Murphy et al. (2017) QATSSD score: Good Perry et al. (2011) QATSSD score: Good Power and Bartlett (2019) QATSSD score: Good Prosser and Moss (1996) QATSSD score: Moderate Robertson et al. (2001) QATSSD score: High Robertson et al. (2007) QATSSD score: High Sango and Forrester-Jones (2018) QATSSD score: High The Money, Friends, and Making Ends Meet Research Group c/o Tilly. L. (2012) QATSSD score: High Key findings from an examination of the quantitative data within this review are presented below. These findings relate to network size and characteristics, accommodation and location, and activities. Network size in the 11 quantitative studies which measured this specifically, ranged from 0 (Dagnan & Ruddick, 1997) to a mean of 42 members (Forrester-Jones et al., 2004). Average network size reported in the quantitative studies was 12,059 members. Across the almost 30?years of this review, staff, family and other adults with intellectual disabilities most typically made up the majority of people's network membership, with other people without intellectual disabilities being in a minority. Those studies which measured networks in other ways, such as number of people seen in the previous seven days (Cooper, 1998), or number of activities undertaken with other people in the last four weeks (Emerson & Mcvilly, 2004) also found that networks were typically limited to these three groups. In Dagnan & Ruddick's, 1997 study, where mean network size was 3.1 members, the authors suggested that low numbers of non-disabled people in networks could be as a result of only recently moving from an institutional setting. In the most recent quantitative study, Bhardwaj et al. (2018) found the same three groups made up the bulk of adults' networks, with higher than average network size possibly linked to health, age and level of socially inclusive activities. Network size in all studies though remained significantly lower and less diverse than non-disabled people's networks. A key positive influence on social network size and/or satisfaction with social network members was accommodation type and location, which were usually inter-linked, most often as a result of U.K. Community Care policies which resulted in the closure of long-stay hospitals or other institutional settings. Studies found that larger settings, such as large residential homes, related to larger numbers of contacts with other adults with intellectual disabilities (Cooper, 1998), with few or no friends reported outside of the home (Donnelly et al., 1997). Cluster housing was reported to be related to smaller network size than accommodation which was more dispersed (Emerson, 2004). Smaller homes based in the community related to networks which were less dense (Dagnan & Ruddick, 1997; Emerson et al., 2000) and more likely to be considered close and companionable (Forrester-Jones et al., 2006). Grant (1973/1993) found that when adults with intellectual disabilities lived with parents, networks were typically small (six family and one friend or neighbour) with mothers providing most care. The structure of networks in this study changed over 2?years as policies were introduced which led to professional workers becoming more involved in the lives of adults with intellectual disabilities and their parent carers. This tended to replace the one friend or neighbour with one professional worker, leaving network size unchanged. Perry et al. (2011) offered an alternative view of the influence of accommodation and location. In their study of adults moving from institutions into community settings, they found that staff training may have been an influencing factor in the higher number of activities undertaken by adults before they left the institutional setting. Hospital staff knew that adults were going to be moving into community settings, and the institution day service closed; suggesting that while important, smaller community-based accommodation could be even further enhanced. Robertson et al. (2001) similarly found that while accommodation was a clear factor in network size and structure, personal characteristics, staff ratio, institutional climate and the use of ?active support? also affected these aspects of the social networks of adults with intellectual disabilities. Over the timeframe of these studies, it was suggested that public spaces where friendship activities were found to be more likely to occur (Emerson & McVilly, 2004). Forrester-Jones et al., (2004) findings concurred; they concluded that being employed was a significant factor in increasing social network size and diversity. Day services, where these were available and accessed, were spaces where adults with intellectual disabilities could engage with others outside their home environment, but networks remained small overall (Bhardwaj et al., 2018; Cooper, 1998). Many studies highlighted that even though policies with their basis in normalisation principles, such as community care and person-centred planning, had had a beneficial impact on the lives and networks of adults with intellectual disabilities, the aim of full inclusion in terms of community presence and relationships that early authors had argued for had yet to be achieved (Cooper, 1998; Donnelly et al., 1997; Robertson et al., 2001, 2007). They found that although activities had shifted location from institutional to community settings, these were still segregated from ?ordinary? activities enjoyed by non-disabled people. Activities often took place as a group of adults with one staff member all undertaking the same necessary household activity such as shopping, or took place in day service settings. Both these types of activity, while important, provided adults with limited opportunity to create relationships or build networks as they were unlikely to either meet new people, or to meet a diverse range of people (Lippold & Burns, 2009). Contacts with new neighbours did not necessarily lead to inclusion (Perry et al. 2011); and adults with intellectual disabilities remained criticised by others across settings and by different network members (Forrester-Jones et al., 2004, 2006; Hulbert-Williams et al., 2011). Where networks increased significantly and included higher numbers of non-disabled members, this was in a workplace setting and networks took time to develop as familiarity grew (Forrester-Jones et al., 2004). An examination of the quantitative data has suggested that social network size and structure can be affected by policy. Policies based on normalisation from the 1990s led to adults with intellectual disabilities being moved from institutional to a range of community settings. This provided opportunities for social networks to be developed and maintained. Differences in social networks were found between accommodation type and location, and activity type. Networks remained smaller than that of the wider non-disabled population and were typically comprised of other people with intellectual disabilities, staff and family. Forrester-Jones et al. (2006) highlight the importance of allowing individuals with intellectual disabilities to report on their own social lives, rather than relying on staff accounts; individuals being the best judge of who is included in their social network. Gregory et al.'s (2001) study found participants valued relationships which were friendly, where people got on with one another and did ?ordinary? activities together, such as shopping, working and conversing with neighbours. In that vein, supportive relationships, where they existed, were recognised and valued by people with intellectual disabilities (Bhardwaj et al., 2018). This could be seen in people with intellectual disabilities' definitions of friendships particularly. For example,We say that a friend is someone who is there for you when you are stuck, and someone who is gentle, kind and helpful. You can tell your friends things you do not want other people to know. It is also about having people to spend time with and do things together. (The Money, Friends and Making Ends Meet Research Group, 2012, p. 130) We say that a friend is someone who is there for you when you are stuck, and someone who is gentle, kind and helpful. You can tell your friends things you do not want other people to know. It is also about having people to spend time with and do things together. (The Money, Friends and Making Ends Meet Research Group, 2012, p. 130) Using thematic analysis to consider the experiences of adults with intellectual disabilities from their own perspective, an aspiration for ordinariness, of ?normality? was found throughout the qualitative literature, yet opportunities for the development of broader social networks were often thwarted (Hamilton et al., 2017; Jahoda et al., 1990). This was the main theme which emerged in the analysis of the qualitative data. The following subthemes were also identified: networks and identity; networks and power; networks and inclusion; networks and family; and networks and support services (see Figure 2). These are presented in turn below. The ways in which people with intellectual disabilities made meaning of their experiences were directly affected by how they understood themselves in terms of their relationships with others (Heyman et al., 1997; Head et al., 2018). This could be confusing (Dagnan & Ruddick, 1997; Head et al., 2018) and work both positively and negatively for individuals. The dichotomy that adults with intellectual disabilities experienced was knowing that even while striving to be ordinary, they were being treated as other than ordinary, which could also negatively impact one's sense of self and one's relationships (The Money, Friends, & Making Ends Meet Research Group c/o Liz Tilly, 2012). Positive relationships and networks were found to be essential for the formation of a positive sense of identity (Gregory et al., 2001; Heyman et al., 1997; Jahoda et al., 1990). A negative social identity could equally be created through negative relationships and networks. Hulbert-Williams et al.'s (2011) study for example noted the relationship between some psychological problems and higher levels of criticism by others. The creation of positive social networks and identities included the need for support from others which should be multi-dimensional in order to be effective. This included support to understand social norms which societies create around forming and maintaining relationships and the ways in which identity can be affected by deviance from those norms (The Money, Friends, & Making Ends Meet Research Group c/o Liz Tilly, 2012). Support could be from a variety of sources which should include self-advocacy (Gregory et al., 2001; Heyman et al., 1997). Without support, lack of social networks and valued identities could be thwarted and could lead to vicious cycles within relationships and networks, where people with intellectual disabilities had devalued social identities and could deal with the frustration this caused through fatalistic acceptance of those spoiled identities, often experiencing depression, anxiety, hostility or anger (Hulbert-Williams et al., 2011). Robert for example explained how his lack of networks affected his sense of self, ?I have a bottle of vodka, big massive bottle of vodka on own and drink it. I said ?nobody wants me?? (Hamilton et al., 2017, p. 301). Thwarted opportunities also related to power, especially the powerlessness experienced by adults with intellectual disabilities. When relationships with staff worked well, this could outweigh many other disadvantages people experienced within their new services, especially when people moved out of institutional care (McConkey et al., 2003). A lack of control in relationships with staff was particularly apparent though when people spoke about their experiences of relationships in institutional settings. Abusive relationships with staff could have subsequent negative effects on sense of self (Head et al., 2018). As a participant in Gregory et al.'s study (2001, p. 287) explained, ?They're quite all right here, as long as you do what you're told?. People also experienced little power over ending of relationships, especially when decisions about where they live, with whom, and whether and when they move were made at short notice, often without information or their input. Often the importance of maintaining relationships was thwarted by staff who were nevertheless ideally placed to support that maintenance (Jahoda et al., 1990; McConkey et al., 2003). When relationships, which often helped people to feel safe, were so frequently ended (especially relationships with staff), people were left feeling bereaved as they knew and were known by so few people (Hamilton et al., 2017; Head et al., 2018). People reported finding a range of systems difficult or impossible to negotiate (Power & Bartlett, 2019). Many people did not have access to digital systems and many could not read or write, so needed support from people in their networks without intellectual disabilities in order to access and negotiate systems which are vital for well-being (such as welfare benefits, housing and finances). When this was lacking, people could easily experience a slide into debt and crisis without the social networks and relationships which could slow or stop the slide into powerlessness (The Money, Friends, & Making Ends Meet Research Group c/o Liz Tilly, 2012). Policies introduced to promote adults with intellectual disabilities as employers of their own staff, in principle appeared to afford the opportunity to move into more powerful roles. Yet people still experienced stigma and powerlessness even in these relationships (Hamilton et al., 2017), thereby thwarting possible opportunities for social network development. The composition of people's social networks was far from inclusive of non-disabled people, with most people with intellectual disabilities having very few close relationships of any kind and of those, most being people with intellectual disabilities. People who had moved from institutional life to living in communities were often, ?deeply disappointed? (Jahoda et al., 1990, p. 138) with their lack of integration into ?ordinary? community life and their lack of expected friendships with non-disabled people. Sadly, lower expectations were indicative of people's higher satisfaction with their move (Gregory et al., 2001; Head et al., 2018). Lack of community acceptance appeared to occur irrespective of a person's previous or current accommodation (Murphy et al., 2017). Lack of meaningful daytime activity was also an issue (Murphy et al., 2017) and when staff attempted to involve people with intellectual disabilities in their communities through activities, these tended to be activities delivered to groups of people with intellectual disabilities rather than as part of wider communities. The effects of the double stigma of having intellectual disabilities and having segregated activities affected individuals and their sense of self, ?Makes me feel that size, (the participant made a gesture towards the ground indicating how small he felt) as though I could just crawl into a hole and curl up? (Jahoda et al., 1990, p. 139). This stigma was also seen in ?ordinary? activities and spaces. Adults with intellectual disabilities and the people who supported them were aware of often erroneous reasons for resistance from employers for example (Hamilton et al., 2017; Murphy et al. 2017), even when people performed above the standard of non-disabled colleagues (Hamilton et al., 2017). Much of the literature suggested the need for not only individualised approaches to the training of people with intellectual disabilities and their staff, but also wider tackling of the social stigma attached to negative perceptions about people with intellectual disabilities. This stigma thwarted opportunities for social network development. Authors suggested tackling stigma could begin to dismantle barriers and negative stereotypes, which otherwise may have prevented non-disabled people from considering friendships with people with intellectual disabilities (Forrester-Jones et al., 2004; Head et al., 2018; Heyman et al., 1997; Jahoda et al., 1990; McConkey et al., 2003). Most studies highlighted that a key relationship in many people's lives was the relationship they had with members of their family. As with other relationships in the literature, family relationships (and their lack) could have an empowering or disempowering effect in people's understandings of themselves and their network development. When people with intellectual disabilities received positive regard from people in their social networks, particularly family, (sometimes described as, ?best friend? (Bhardwaj et al., 2018, p262)), it boosted their self-esteem and self-image. Being close to family both figuratively and literally could improve the way people with intellectual disabilities felt about themselves (Head et al., 2018; Heyman et al., 1997; Jahoda et al., 1990). Conversely, physical and emotional distance or abuse could have devastating effects (Power & Bartlett, 2019; Grant, 1973/1993). While families could be a source of valuable and valuing support, Murphy et al. (2017, p. 964) warned professionals not to make assumptions about family settings equating to positive solutions, as when family were perceived as overprotective or abusive (Power & Bartlett, 2019) people experienced limitations in the rest of their relationships and network (Grant, 1973/1993; Bhardwaj et al., 2018), thwarting opportunities to develop supportive networks. Just as authors suggested that policies based in normalisation, such as personalisation and community care, could be perceived as mere rhetoric when not backed by resources, families too were fearful of their family members falling through the gaps in any policy delivery (Prosser & Moss, 1996; Grant, 1973/1993), so strived to protect them from the ?irresponsible? ?drive towards increased independence and choice? at any cost (Hamilton et al., 2017, p. 295). In situations where family were absent, the importance of being connected socially, including being connected to charitable services, became essential for well-being, relationships, social justice and rights (Hamilton et al. 2017; The Money, Friends, & Making Ends Meet Research Group c/o Liz Tilly, 2012). These adults with intellectual disabilities were often reliant on a Social Worker or Care Manager to make decisions on their behalf, making their struggle harder than for those who had family support (Hamilton et al., 2017; Power & Bartlett, 2019). Both people with intellectual disabilities and their (often older-aged) parents could feel trapped in situations where their own expectations around coping were unrealistically high yet support for improvement was desperately needed but either not trusted or not forthcoming, leading people with intellectual disabilities and their wider family members to crisis point (Prosser & Moss, 1996). Policies which promoted the far earlier intervention by professionals, respected the reciprocal nature of care, and had a psychological understanding of the functioning of families and social networks, could better enable the development of wider social network structures and community participation (Grant, 1973/1993). Where Local Authorities had reduced or removed the services they provided, often voluntary sector groups had been a vital source of support. Despite positive policy developments, when experiencing cuts to their services people with intellectual disabilities appeared thwarted in their lives and opportunities for relationships without significant additional support from others (Power & Bartlett, 2019; The Money, Friends, & Making Ends Meet Research Group c/o Liz Tilly, 2012). Adults with intellectual disabilities needed support not only to access social activities and networks but also to access a range of support services (Sango & Forrester-Jones, 2018). Negative impacts of cuts to services on existing networks were reported. Lack of money and irregular hours of support led to reports of boredom (Power & Bartlett, 2019; The Money, Friends, & Making Ends Meet Research Group c/o Liz Tilly, 2012), isolation and harassment by strangers or neighbours. Hamilton et al. (2017) and The Money Friends and Making Ends Meet Research Group c/o Liz Tilly (2012) suggested that any positives of the Personalisation agenda were greatly diminished by significant cuts to social care budgets. As Michael explained, ?they're trying to stretch people as far as they can without spending any money to give people support? (Hamilton et al., 2017, p. 294). Proactive support and reciprocal social network relationships were required to prevent problems occurring in the first instance, with for example reading letters, paying essential bills, shopping, accessing food banks and budgeting on very limited or zero finances until benefits were available (The Money, Friends, & Making Ends Meet Research Group c/o Liz Tilly, 2012). As austerity policies continued, relationships and meaningful networks were perceived as being unimportant in the eyes of funders (Hamilton et al., 2017, p. 301). It was therefore unsurprising that people with intellectual disabilities could feel, ?Sometimes it seems like we are always in a battle? (The Money, Friends, & Making Ends Meet Research Group c/o Liz Tilly, 2012, p. 131).
Keywords
- normalisation
- policy
- relationships
- social networks
- stigma
ASJC Scopus subject areas
- Education
- Developmental and Educational Psychology