One Social Network, Two Perspectives: Social Networks of People with Down Syndrome Based on Self Reports and Proxy Reports

Abstract

Background:

For people with intellectual disabilities (ID), social networks play a key role in facilitating social inclusion, health, and quality of life. This study shows that a multi-informant approach to collecting social network data improves our understanding of the social worlds of people with Down Syndrome (DS).

Method:

A mixed methods egocentric network approach was employed to investigate 27 dyads comprised of people with DS and their family members as proxy reporters to examine variability in network characteristics across self- and proxy reports.

Results:

The self-reported total network size of people with DS was significantly smaller than the network size based on proxy reports. Significant differences were found between self- and proxy-reported networks with respect to most relationship groups. Proxy informants reported more “paid staff”.

Conclusion:

Our study showed that multiple perspectives on the social networks of people with DS are advantageous for researchers, policy makers, and practitioners.

1. Introduction

There is strong evidence suggesting that being embedded within a social network is important for a person’s health, quality of life, sense of belonging, and security (Holt-Lunstad, 2018; House, Landis, & Umberson, 1988; Umberson & Karas Montez, 2010; Valente, 2010). Here, a social network is the set of people with whom a focal individual interacts in various ways, also referred to as a personal or ego-centered network (Hannemann & Riddle, 2005; Marin & Wellman, 2011). Social networks have structural and functional features, including the types and strengths of relationships and resources exchanged among network members. People who have few or no relationships with others are socially isolated; those who are formally and informally connected to others experience a strong sense of belonging and community (Umberson & Karas Montez, 2010). Social connectedness is associated with improved health and longevity, likely through increased access to resources, such as employment opportunities, information, and social support (Holt-Lunstad, 2018; House et al., 1988).

Very little is known about the social worlds of people with Down Syndrome (DS). Understanding their social networks will provide invaluable information on how to support the health and well-being of people with DS as they age. There has been a remarkable improvement in the life span of people with DS over the past 80 years; currently, people with DS have a life expectancy of approximately 60 years in developed countries, compared to a life expectancy of just 12 years in the 1940s (Bittles et al., 2002). This increased life expectancy brings with it new challenges related to anticipating and preparing for the care and support people with DS may need from family and other network members as they age. Moreover, people with DS are at a greater risk of developing Alzheimer’s disease (Strydom et al. 2010), pointing to the need for ageing parents, who are often the primary caregivers, to identify strategies of care for when they no longer are able to provide required care.

While there is a growing body of literature on the social networks of people with intellectual disabilities (ID), there has been no research on the social networks of people with DS in particular. Taken together, there is a need to better understand the social support networks of people with DS, particularly those who are older, in order to develop strategies to better support people with DS and their families as they age. In this study, we investigated the social networks of people with Down syndrome (DS) as reported by both the person with DS and a family member (the terms ‘family member’ and ‘proxy’ are used interchangeably throughout this report).

1.1. Social Network Studies of People with ID

According to the United Nations Convention of the Rights of Persons with Disabilities (2006), people with disabilities have the right to live and age in their communities with opportunities equal to those of people without disabilities. While there have been considerable improvements in recent years, physical presence in a community alone does not guarantee actual social inclusion. Further, simply participating in a community activity does not guarantee meaningful social contact and a sense of belonging (Abbott & McConkey, 2006; Ager, Myers, Kerr, Myles & Green, 2001).

From research on the social networks of people with ID, we know that they have smaller social networks consisting of fewer members than other groups, such as people with physical disabilities (Lippold & Burns, 2009; Robertson et al., 2001), people with autism spectrum disorders, and members of the general public (Pockney, 2006; van Asselt-Goverts, Embregts, Hendriks, 2013; Wiener & Schneider, 2002). Thus, there is some evidence that people with ID are socially isolated. Sullivan and colleagues (2016) found that close relationships are particularly important for people with ID to feel safe and have consistency in their lives. This evidence suggests that the quality and function of these relationships may be at least as or even more important than the mere number of people in their networks. However, forming and maintaining close relationships is difficult for people with ID. Indeed, many barriers must be overcome. Overall, people with ID tend to have fewer opportunities for forming friendships due to, for example, the lack of transport, fewer opportunities to meet people, and a lack of reciprocity (Brackenridge & McKenzie 2005; Friedmann and Rizzolo, 2018). While for many people with ID, the ideal close relationship is characterized by feeling valued and accepted, in many cases they experience the opposite—including feelings of powerlessness and being overly controlled (Sullivan, et al., 2016). In addition to the number of network members, it is therefore important to know more about the perceived closeness and quality of relationships that people with ID have with others.

1.2. Social Network Data Collection

A variety of approaches have been used to collect data about the social networks of people with ID. Self-reports on social networks is the most common approach (Jahoda & Pownall, 2014; Lippold & Burns, 2009; Rosen & Burchard, 1990; van Asselt-Goverts et al., 2013). Lunsky & Benson (1997) demonstrated that people with mild intellectual disabilities are reliable reporters about their personal social support network. Ethnographic approaches have also been used to study the social networks of people with ID and their influence on employment (Donelly et al., 2010; Petner-Arrey et al., 2015). As well, proxy reports have been used, relying on information about the social networks of people with ID by surveying support staff or housing managers (Bigby, 2008; Forrester-Jones et al., 2006), legal representatives, and parents (Kamstra, van der Putten, Post & Vlaskamp, 2015).

In a recent paper, Scott & Havercamp (2018) used self and proxy reports to collect information about the social networks of people with ID. They argue that a better understanding of how self-reported and proxy-reported data relate to each other can lead to a better interpretation of data when one of those types of data (e.g., self-reports) are not available (Scott & Havercamp, 2018). However, they did not collect qualitative data to explain the similarities and discrepancies between self- and proxy-reported data. In the current study, we addressed this gap by collecting qualitative data that offers opportunity to understand more fully how self- and proxy-reported data do or do not relate to each other.

We analyzed the social support systems of people with ID—specifically adults with Down syndrome (DS)—based on self- and proxy-reported information. The qualitative data complemented the quantitative data to help us explain discrepancies between self- and proxy-reported social networks. Collecting both qualitative and quantitative data helped us to explain, for example, why people with DS or their proxies added unique network members when reporting on social networks. Thus, the multi-informant nature of the study provided insight into the varying perspectives on the same social networks of people with DS. This insight will help us to understand why some relationships are apparently more important to people with DS than they are to their proxies and vice versa.

In this article, we demonstrate that this multi-informant approach to collecting social network information can improve our understanding of the social networks of people with DS, particularly through consideration of the differences between the self- and proxy-reported social network data. Using a mixed methods approach, this paper aims to achieve the following:

1. Describe the composition (size, relationships) of the social networks of people with DS, based on both self and proxy reports;

2. Evaluate the overlap of network members across self- and proxy-reports; and

3. Determine whether there are systematic differences in the network compositions based on self- and proxy-reports and identify the reasons for these differences.

2. Method

This study used a mixed methods sequential explanatory design, including a quantitative phase followed by a qualitative inquiry with the goal of further explaining the results obtained through the quantitative analysis (Creswell, Plano Clark, Gutmann, & Hanson, 2003; Domínguez, & Hollstein, 2014). The Institutional Review Board (IRB) at the participating university approved the study.

2.1. Recruitment

Adults with DS were recruited through contacts with local Down syndrome associations, agencies that provide support for people with DS, and through volunteering at events such as ‘buddy walks’ for people with DS (where flyers were distributed). Proxies and people with DS who were interested in participating in the study contacted the first author directly.

2.2. Participants

To be included, the participants with DS had to meet the following criteria: i) being 18 years or older, and ii) being able to respond to questions either verbally or in writing. People with and without guardians were included in the study. The proxy interviewees had to meet the following criteria: i) being a self-identified support person for a study participant with DS, and ii) having received consent from the person with DS that the proxy can talk with the researcher about the person with DS’ social network. Each participant received a $15 gift card.

Overall, 54 interviews were conducted, 27 of them with people with DS and 27 with their respective proxies. These interviews were conducted in two states in the Midwest of the United States between September 2016 and August 2017. Twenty-one mothers, three parent couple (mother and father were treated as one proxy), two sisters, and one cousin of a person with DS were interviewed. Eighteen proxies lived in the same household with the person with DS. While people with DS were between 19 and 58 years old (M = 31.2 years), family members ranged in age from 42 to 82 (M = 57.66). All names are pseudonyms. All participants were white and all people with DS had some kind of employment. Other demographic data of the participating people with DS and their family members are provided in Table 1.

Table 1.

Demographics of people with DS and their family members

		People with DS (N = 27)	Family Members (N = 27)
Female		70.40% (19)	88.88% (24)
Age
	19-29	48.15% (13)	0.00% (0)
	30-49	40.74% (11)	25.93% (7)
	>50	11.11% (3)	74.07% (20)
Mean Age		31.22 years (range 19-58 years)	57.67 years (range 42-82 years)
PPVT
Mean raw score		106.11 (range 40-157)
Mean age equivalent (months)		81.15 months (range 41-129)
Living Situation
	With the family member	66.70% (18)
	Without the family members	33.30% (9)
Relationship to person with DS
	Parent		88.88% (24)
	Other relative		10.30% (3)

Abbreviation: PPVT, Peabody Picture Vocabulary Test

2.2. Procedure

Interested participants were contacted and chose the place for interviews, often including study rooms in public libraries or family homes. All participants provided written informed consent. The first author interviewed each person with DS and her or his proxy separately using a standard semi-structured interview guide. The interviews with individuals with DS were always conducted first, in order for them to give the researcher permission to speak with the proxy about his or her social network. Each interview first collected basic demographic information, and the person with DS then completed the Peabody Picture Vocabulary Test (PPVT). The social network interview was then conducted which took between 30 to 45 minutes.

2.3. Measures

2.3.1. Language comprehensive score.

Prior to the social network interview, the Peabody Picture Vocabulary Test, Fourth Edition (PPVT-4; Dunn & Dunn, 2007) was used to measure receptive vocabulary language. The PPVT-4 has been used in adults with mild to moderate ID; acceptable test-retest reliability and concurrent validity with this population have been reported elsewhere (Dunn & Dunn, 1981; Lewis, Freebairn, Heeger, & Cassidy, 2002). The raw score of the PPVT ranged from 40 to 157 (M = 106.11). Transferred to age equivalents, this resulted in a range of 41 to 129 equivalent months, indicating that our participants’ intellectual disability ranged from moderate to mild. No one was excluded because of their PPVT score.

2.3.2. Social Network.

To collect the social network data, we combined the concentric circle technique, or hierarchical mapping, with social network interviews (Antonucci, 1986; Tracy & Whittaker, 1990). The hierarchical mapping technique is a reliable approach and has been extensively used in social network research including a national study of the support networks of older adults (Antonucci & Akiyama, 1987) and studies investigating the social networks of people with ID (Forrester-Jones et al., 2006; Jahoda & Pownall, 2014; Krauss, Seltzer, & Goodman, 1992; Lippold & Burns, 2009; Robertson et al., 2001; Tracy & Whittaker, 1990). To visualize and produce the social networks during the interviews, a notebook and the program VennMaker 2.0.0 were used.

2.3.2.1. Self-reported network.

The social network interviews with the individuals with DS began with the following name generator question: “Think about the people you saw, talked with, or wrote to. This includes people who made you feel good, people who made you feel bad, and others who just played a part in your life. They may be people who had an influence on the way you made decisions during this time. Right now, we’ll list as many people as you come up with—we can add to that list as you think about the questions that I will ask you later.” Because of the limited research about the social networks of people with DS, we used this very general name generator question and did not further restrict the participants with regard to time (“within the last six months”) or any other category as is often done in social network research.

Participants with DS were then asked to place each member on one of three concentric circles, each circle representing a different level of closeness. The first circle included network members who were regarded as “emotionally close” and “so close to you that it would be hard to live without them” (i.e., very close). The second circle included those who were seen as close but not as close as those in the first circle (i.e., somewhat close), and the third circle included network members who were not as close as the others, but still included in the participants’ social network (i.e., not very close).

The circles were divided into different sectors. Each sector represented a particular relationship category, including family (e.g. aunts, uncles, mother, and father), neighbors, organizations (e.g., Special Olympics), co-workers, paid (care) staff, and friends. The network members were added according to their relationships to the individuals with DS (see Figure 1). Participants could add network members at any time as additional people came to mind. Some people with DS used their smartphone to check if they wanted to add another person to the network. They were free to talk about each network member; however, they were not prompted to share information about their decisions to add or not to add network members. Most participants talked while developing their social network map and provided information about why they decided to add or leave out certain network members. These interviews were audio recorded.

Figure 1.

Example of a hypothetical social network map, produced with VennMaker 2.0.0

2.3.2.2. Proxy-reported network.

The social network interviews with the family members followed the same format. The family members received identical instructions and prompts, with one important difference. They were asked to answer the questions from the perspective of the person with DS (e.g., “Now think from the perspective of [name of the person with DS]; how close is this person [pointing to an identified network member] to [name of the person with DS]?”).

2.4. Data analysis

The data were processed and analyzed using SPSS version 25. To describe the differences in social network composition between self- and proxy-reports, we calculated the absolute number of network members nominated in each relationship group (family, friends, paid staff, work, organization and neighbors). Paired sample t-tests were used to test whether the means of the network sizes differed significantly between self- and proxy-reports.

To identify network members that were uniquely nominated by either the proxy or the person with DS, the self- and proxy-reports were reconciled by matching network members reported by both informants based on first names. Individuals qualified as “uniquely nominated” when they were named by either the proxy or the people with DS, respectively, but not by the other informant, irrespective of the relationship category they were placed in. For example, if the person with DS identified Dagmar as a friend and the mother identified Dagmar as a professional, Dagmar would not count as a unique network member. To further analyze why proxies and people with DS uniquely reported certain network members, a thematic analysis (Braun & Clarke, 2014) was conducted using the transcribed interviews.

3. Results

3.1. Social Network Composition from two Perspectives

For each network member, two indicator variables were constructed representing whether the person with DS nominated the network member (self-report = 1) and whether the proxy-report nominated the network member (proxy-report = 1). A cross tabulation of the variables ‘self-report’ and ‘proxy-report’ for each of the relationship groups identified both common and unique network members in each relationship group. Table 2 shows the total number of network members nominated in each relationship group (family, friends, paid staff, work, organization, and neighbors) by the person with DS and the proxy, respectively.

Table 2.

Frequency, percent, means and standard deviations of self- and proxy- reported network sizes and composition

Relationship Groups	People with DS (N =27)				Proxies/Family Members (N=27)
	Total	%	M	SD	Total	%	M	SD
Family*	194	50.0	7.19	2.80	234	44.2	8.67	2.53
Friends	102	26.3	3.78	2.68	113	21.3	4.19	2.42
Paid staff***	23	6.2	0.85	1.40	66	12.5	2.44	1.95
Work	30	7.7	1.11	1.25	40	7.5	1.48	1.22
Organization**	29	7.5	1.07	1.04	62	11.7	2.30	1.94
Neighbours*	9	2.3	0.33	0.62	15	2.8	0.56	0.70
Total***	387	100	14.33	5.26	530	100	19.63	5.23

NOTE: Paired sample t test was used to evaluate mean differences,

^*p < .05;

^**p < .01;

^***p <.001.

The 27 people with DS nominated a total of 387 network members, resulting in a mean network size of 14.33. The 27 proxies nominated a total of 530 network members, resulting in a mean network size of 19.63. On average, proxies nominated significantly more network members in the person with DS’s network in each relationship group with significant differences observed for family, paid staff, organizations, and neighbors. Notably, the relationship group ‘paid staff’ was the third largest relationship group as reported by the proxies, but was the second to last category as reported by people with DS. Paid staff constituted almost 13% of all network members nominated by proxies but only 6% of all network members nominated by people with DS.

3.2. Overall Nomination and Matching Nominations

The total number of network members nominated by all informants was 612. Out of this total number, people with DS and proxies named the same person 305 times, 49.84% of the total nominations. When considering the informant type (i.e., people with DS or proxies), the match ratio of the members nominated by people with DS was higher than the match ratio of the members nominated by proxies (see Table 3), indicating that proxies or family members made more unique nominations.

Table 3.

Overview of total nominations, matching nominations and unique nominations by informant type (people with DS or family members)

	People with DS (N = 27)	Proxies/Family Members (N = 27)
Total nominations by informant type	387 (100%)	530 (100%)
Total match (names match exactly)	305 (78.8%)	305 (57.5%)
Unique nominations	82 (21.2%)	225 (42.5%)
Total nominations by both informant types (total match plus total unique)	612

Out of the 305 matching nominations, informants only place 12 network members in different relationship categories. While these nominations counted as matches, they did not count as unique nominations.

3.3. Unique Network Members

A network member that was nominated only by a person with DS or only by a proxy but not by the other informant was considered a uniquely nominated network member. This approach highlights the advantages of a multi-informant design. Such a design provides information on how network sizes would differ and which network members would have been missing if the networks had only been reconstructed based on reports from one informant. Table 4 shows the distribution of unique network member nominations by the proxy and the person with DS. If people with DS were not asked about their social networks and only proxy reports were considered, on average, three network members would be missing. If proxies were not asked about social networks and only self-reports were considered, on average eight network members would be missing. As seen in Table 4, unique nominations for people with DS tend to be in the relationship group “friends” (i.e., 40% of all unique network members). For proxy reports, unique network members tended to be “family” (27%) or “paid staff” (22%). Notably, there are varying patterns with regard to the unique nominations of network members across the two groups: people with DS are more likely to uniquely nominate friends and coworkers than proxies. Proxies, on the other hand, are more likely to uniquely nominate paid support staff and organizations.

Table 4.

Unique nominations of network members and percentages of unique nominations by people with DS and proxies, distinguished by relationship groups

Relationship Groups	People with DS (N = 27)			Proxies/Family Members (N = 27)
	Total	M	%	Total	M	%
Family	19	0.70	23.2	60	2.22	26.7
Friends	33	1.11	40.2	47	1.74	21.9
Paid Staff	8	0.30	9.8	49	1.81	21.8
Work	11	0.41	13.4	19	0.70	8.4
Organization	9	0.44	11.0	43	1.59	19.1
Neighbours	2	0.07	2.4	7	0.26	3.1
Total	82	3.03	100	225	8.33	100

3.4. Closeness levels of the unique nominations

We examined how close the nominated persons were perceived to be to the person with DS, based on both self- and proxy-reports. Closeness levels provided information about the importance and meaning of the relationship for a person. Figure 2 shows the unique network members nominated by either proxies or people with DS according to closeness levels. If we consider the unique nominations, only 11% of all network members uniquely nominated by proxies were ranked as ‘very close’ (i.e., the inner circle). In contrast, 29% of all network members uniquely nominated by people with DS were ranked as ‘very close’. For network members regarded as ‘less close’ (i.e., the outer circle), however, the relationship was reversed: The percentage of network members considered ‘less close’ uniquely reported by proxies (40%) was twice as high those reported by people with DS (20%).

Figure 2.

Percentages of unique network member nominations by people with DS and family members according to closeness level

3.5. Reasons for unique nomination of network members

After identifying the unique nominations, we went back to the interview transcripts to find the text passages about the unique network members. While neither the people with DS nor the proxies were prompted to explicitly talk about their reasons for nominating network members during the interviews, both groups of informants spontaneously provided further explanations. People with DS provided explanations for why they nominated network members for 21% of those who turned out to be unique; similarly, proxies provided explanations for 38% of uniquely nominated network members.

To develop themes based on the information provided by the people with DS and their proxies for discrepancies in network member nominations, the thematic analysis approach from Braun & Clarke (2014) was used. The first author worked closely with her qualitative research group. She developed the codes but they were then repeatedly discussed in the group and subsequently checked for agreement. Five themes were developed to explain differences in nominations by proxies and people with DS: 1) Network members had an influence on the person with DS in the past; 2) Network members have an important future role for the person with DS; 3) Network members support the proxy; 4) Helping to integrate the person with DS into the community; 5) Special Bond.

3.5.1. Theme 1: Network members had an influence on the person with DS in the past.

Proxies sometimes reported network members that people with DS did not mention because they believed that this person had an important influence on their son’s or daughter’s life in the past. This might have been a long time ago, and the person with DS might not have had regular contact with them more recently. In the following example, a proxy decided to include a cousin in the network because the proxy believed that the cousin was a role model for the son with DS:

He [cousin] played hockey when he was young, and we went to a lot of his games, and Ron [person with DS] always wanted to play hockey like his cousin Nick, and then we found this program for Ron. [Mother 126]

3.5.2. Theme 2: Network members have an important future role for the person with DS.

Proxies also added network members—especially family network members—that they expected to play an important role in the future. In the quote below, the proxy (i.e., a mother) and her husband explained that they added the person with DS’ cousin and her husband because they would play an important legal role in their daughter’s future when they themselves as parents would no longer be able to do so. When the interview was conducted, the parents were not in close contact with these potential future guardians who lived far away. But they believed they would provide support in the future because of their professional background and because are younger:

Hanna [cousin] is a lawyer. And her husband Sebastian is a financial analyst. And they’re like in their 30s, so they are younger than us. … So, that’s why we put Hanna and Sebastian in charge of Anna [person with DS] stuff. And yeah, we talked to them about it and they agreed to it. And Sebastian is very knowledgeable about trusts and wills and stuff like that because that’s the field he’s in. [Mother 113]

3.5.3. Theme 3: Network member support the proxies.

Proxies often identified aunts and cousins who were supportive to themselves as proxies. These people listened to their worries and helped them when they had parenting needs that were difficult to handle. In the following quote, for example, a mother of a person with DS describes how her sister and niece helped her to convince her daughter with DS to make a decision that the mother preferred:

Like we went to a wedding and she [person with DS] didn’t want to dress appropriately for the wedding and she’s on her period and she didn’t want to wear a pad [laughter]. So then if she didn’t want to cooperate for me then I incorporate somebody else, like an aunt, or a cousin. [Mother 128]

From the descriptive data, we know that almost 27% of the unique network members nominated by proxies were considered “family” (see Table 4). Many of these family network members uniquely nominated by proxies are likely to be people who supported proxies or who played an important role in the person with DS’s past or are expected to do so in their future. They were generally not added to the ‘very close’ level. Most of these people were not currently relevant or even visible to the person with DS.

3.5.4. Theme 4: Helping to integrate the person with DS into the community.

Proxies decided to include paid staff in the support network of the person with DS when they believed that a professional is helping to integrate the person with DS into the community. Paid staff included case managers, support brokers, job coaches, and support staff from agencies. Paid staff tasks included informing families about available resources, providing help with finding jobs, helping to find housing or supported living, and supporting the person with DS more generally. This was especially important when the person with DS had finished high school because these activities provided some structure and support for the person’s everyday life. This transition period from high school to further education or work life was particularly crucial as families needed support with integrating the person with DS into the community. Family members saw these professionals as very important resources for the person with DS and regarded them as fulfilling an important role in their daughter’s or son’s life. Based on the qualitative interview data, we define these activities as ‘helping to integrate the person with DS into the community’.

For example, a mother of a woman with DS included a social worker in her daughter’s social network because she worked closely together with the family and the person with DS. The mother also had known her for a while and they were working together to enable her daughter with DS to move into a supported living apartment with somebody else:

So maybe Emilia [social worker] needs to be on that [referring on the network map on the computer]. I’ve been working with her for a couple of years now. Emilia came to me and said, “There is a family in [city] who’s looking for a roommate. Are you interested?” [Mother 126]

The quantitative data show that almost 22% of paid staff were uniquely nominated by the proxies (Table 4). People with DS did not add as many paid staff as members of their social networks because they did not recognize or value this kind of support as much as family member proxies did. However, there was one exception. From the almost 10% of network members that people with DS uniquely nominated in the ‘paid staff’ relationships group (see Table 4), many were job coaches who were more directly visible on a daily basis to people with DS.

3.5.5. Theme 5: Special bond.

Approximately 40% of the network members in the relationship category ‘friends’ were only nominated by people with DS (see Table 3). These were people that the respective person with DS had a special bond with or shared a special experience with. For example, in the following quote, the person with DS adds a friend [Daniel] to his network because he supported Daniel during a difficult time. This memory of being supportive made the person with DS add him to his network.

Person with Down Syndrome (PwDS): Yeah, like I said, a guy named Daniel.

Researcher: Daniel? So, that’s also a friend, right?

PwDS: Yeah.

Researcher: A friend, okay.

PwDS: Yeah. I was at his mom’s funeral. His mom passed away. [PwDS 116]

Another important reason for self-reports to nominate friends compared to proxy-reports was that the person with DS had a boyfriend or girlfriend. For example, a person with DS told the interviewer about her feelings for her boyfriend: “He is the one for me, and I’m so grateful that he’s in my life!” [PwDs 117]

Proxies were not always aware of these boy- or girlfriends, especially when people with DS lived independently. However, in some cases, proxies were aware of them but did not include them in the network because they did not regard them as important enough. For example, in this particular case (PwDS 117) the mother mentioned the boyfriend of her daughter but did not include him in her daughter’s network because she did not regard them as close:

He’s not, and I wouldn’t call—I mean, he’s a boyfriend kind of in name only. They do things together. Does she feel close to him emotionally? Not necessarily. Is he supportive to her? Not necessarily. It’s just a fun thing, so it’s—I didn’t include him in this circle of network just because he is a part of her life, but I don’t think that he would be somebody that she could go to for help. [Mother 117]

The qualitative data complemented the quantitative data and allowed us to explain why proxies or people with DS added unique network members. The analysis revealed that proxies decided to add network members who served or are likely to serve a more functionally supportive role for the person with DS (e.g., helping them become integrated into society). Likewise, proxies were more likely to add such network members who might not be ‘very close’ to the person with DS. People with DS did not add these network members because they did not regard them as important for their current lives or they were unaware of what these individuals did, does, or will do for them. People with DS rather added network members because they felt ‘very close’ and emotionally connected to them. Proxies, in turn, did not add these network members because they were not aware of them or because they thought that they did not play an important supportive role for the person with DS. These results are based on data that was freely provided during the network interviews and may thus not be representative of the full sample.

4. Discussion

This study investigated the social networks of people with DS and the differences between these networks based on the self-reports of people with DS and reports by their proxies (i.e., family members). We found that the average social network size was 14 members when reported by a person with DS. The average social network size was 19 members when reported by their proxies. This self-reported average network size of people with DS is almost identical with the results of Asselt-Goverts et al. (2013)’s study of social networks of people with mild ID. Regardless of the informant, the network sizes observed in the current study are consistent with previous research on people with ID, which has reported average network sizes between 7 and 22 (Forrester-Jones et al., 2006; Krauss et al., 1992; Lippold & Burns, 2009; Robertson et al., 2001). Our results also support the general finding that the networks of people with ID are smaller than those of people without ID (Lippold & Burns, 2009; Rosen & Burchard, 1990; van Asselt-Goverts, Embregts, & Hendriks, 2014).

It is likely that people with ID with small networks and weak ties to others have fewer resources and opportunities and are therefore more restricted than people with ID with larger networks and closer ties (Pockney 2006; Wiener & Schneider 2002). These restrictions in turn may lead to isolation (Pockney, 2006). One implication of this finding is that it is necessary to expand and strengthen the social networks of people with ID to promote their social inclusion and improve their quality of life, health, and well-being. At the same time, a lot depends on the quality of specific social ties. As long as some of these relationships are particularly deep and meaningful to them, some people might be satisfied with smaller social networks. The quality of these ties and interactions may protect them against the social isolation and other negative effects commonly associated with having small social networks (Amieva et al. 2010). If and how much network size matters for the life satisfaction of people with ID remains an important question for future research.

With respect to network composition, according to both self- and proxy-reports, the social networks of people with DS was largely comprised of family members. This finding is consistent with other network studies of people with ID (Kamstra et al., 2015; Krauss et al., 1992; Lippold & Burns, 2009; Rosen & Burchard, 1990; van Asselt et al., 2013). However, while previous studies reported that professionals play a more important role in the social networks of people with ID than other non-family relationships (Forrester-Jones et al., 2006; Lippold & Burns, 2009; van Asselt-Goverts et al. 2013), this was only partly supported by our study. According to proxies, paid staff were an important part of the social networks of people with DS. However, people with DS nominated significantly fewer paid staff as members of their networks compared to proxies. According to our qualitative data, this discrepancy in the nomination of professionals may be due to people with DS sometimes being unaware of the connecting role that professionals play in helping them become integrated into society. That people with DS are less likely to nominate paid staff is likely attributable to these professionals working most closely with their family members as they coordinate care.

A large proportion of emotionally close, non-family network members were nominated by people with DS but were not nominated by their proxies. Among unique nominations, people with DS nominated 40% of network members as ‘friends.’ This result shows that the importance of friends would have been severely underestimated if the person with DS had not been asked directly about important network members in their social worlds. We found that out of all the network members nominated by people with DS, an average of 29% of nominations at the “very close” level were unique nominations that did not appear in the networks based on proxy-reports. In the literature, these kinds of close relationships are considered to be particularly important (House, 1981; Sullivan, Bowden, McKenzie & Quayle, 2016) but also difficult to form (Sullivan, Bowden, McKenzie, & Quayle, 2016). Among these important but difficult to form relationships are intimate relationships which provide emotional support and promote feelings of belonging. Reis (1990) found that this type of relationship is correlated with self-esteem and self-efficacy. Future research should look more into the intimate relationships and friendships of people with DS from their own perspective and from the perspective of proxies since both seem to perceive these relationships very differently while they are likely to have a very strong effect on the quality of live and the sense of belonging of people with DS.

In comparison to their proxies’ reports of their social networks, people with DS had a smaller proportion of network members at the “somewhat close” level. For people with DS, the decision to add network members to their circle is about how close they feel to a person. Thus, it is critical to continue interviewing people with DS and other ID about their social networks. Otherwise, their perspective, which seems to favor closeness over functional support might get overlooked and the type of support provided as a result might be inadequate.

This research raises important questions about the different perspectives on the social networks of people with DS. Indeed, our results suggest that the social networks provided by people with DS and their proxies vary in important and meaningful ways. For example, a proxy might add particular network members such as paid staff; the person with DS might not add paid staff because they do not perceive their care or support role as important enough. Family members, on the other hand, often facilitate network building for the person with DS and tend to think about these networks in more functional ways (Roll & Bowers, 2019). People with DS, on the other hand, seem to think less about functions and more about emotional closeness. Thus, the person with DS is more likely to nominate friends and co-workers with whom they have an emotional connection. Their proxies are often unaware of these people or of their perceived closeness to the person with DS. In both cases, information about network members that play important support roles would be lost if only one and not both of these perspectives is considered. These results have significant implications for both research and practice aimed at improving the health and well-being of people with DS and their families.

From a policy perspective, it is essential to integrate people with DS and other ID into the community so that they can happy and healthy living there. In our study, we found that work is an important environment for people with DS to build and maintain close relationships. Therefore, more work opportunities should be made available and accessible for people with ID in communities. A third implication is that family members become more aware that – while the functional support of people with DS remains important – emotional closeness plays a key role and might be considered more important among people with DS.

This study has limitations that should be kept in mind. First, the findings are limited to people with DS who live in the community. Second, because we did not systematically ask people with DS and family members to explain why they did or did not include certain network members, the qualitative analysis was restricted to the information freely offered during the network enumeration interviews. While many interviewees were inspired by the visualization of the social networks and talked about why they did or did not add certain network members, others were less open about the reasons. Third, given the fact that the life expectation of people with DS has been increasing over the past decades, social networks might also change with age, which is something we did not investigate systematically.

5. Conclusion

Examining the social networks of people with DS from multiple perspectives provides a more comprehensive picture of the structure and characteristics of the social relationships of people with DS. Given the vital importance of social networks for the health, integration, and overall well-being of people with DS, it is important to get a better understanding of their social networks and the support they receive in the community. This understanding would help in planning more effective social network interventions and benefit researchers when collecting social network data for individuals with DS moving forward. Even in cases where only one party is interviewed about these social networks, referring to the results of this study may allow the findings to be properly contextualized—providing a more accurate interpretation and a better understanding of social networks –and the people with DS within them.

Our results regarding paid staff strengthen our assumption that reconstructing a social network from two perspectives provides important information about these networks that would otherwise be lost. If only one perspective is used, social networks are likely to be incomplete and support staff would miss information they need to support people with DS and other ID in building new and/or maintaining existing relationships. Not including the perspective of the proxy would also be problematic. Without the perspective of proxies, network members with important functions that people with DS tend to not include in their networks might be unacknowledged.