Positive Approaches Journal, Volume 9, Issue 4

Murray | 9-27

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In 1988, three researchers from the University of Michigan made what was for that time a startling claim, which was published in the prestigious journal, Science¹. Their work suggested that “social relationships, or the relative lack thereof, constitute a major risk factor for health—rivaling the effects of well-established health risk factors such as cigarette smoking, blood pressure, blood lipids, obesity, and physical activity.”  While the importance of social connectedness for good physical health is relatively well accepted today, this idea was somewhat shocking at the time. Moreover, fostering relationships as a critical component to safety and well-being remains a challenge today, especially for those disadvantaged by circumstance and/or need. ²

Social isolation activates chronic stress reactions in the brain. This causes marked elevations in cortisol, the body’s main stress hormone. Chronic and repeated exposures to elevated cortisol have negative downstream effects in the body including heightened cardiovascular and inflammatory responses—such as elevated blood pressure and heart rate, chronic pain, and increased susceptibility to illness. Furthermore, this chronic elevation in cortisol—essentially a constant hyper vigilant state, the famed “fight or flight” response—results in greater tendency for impulsive behaviors which can further potentiate these health risks through poor lifestyle choices such as smoking or overeating. Epidemiological research done with large community samples consistently demonstrate that those who are more socially connected live longer and healthier lives.³

The COVID-19 pandemic has made even more clear the wide health disparities which exist in our country.⁴ Individuals who are Black, Latinx, or Indigenous have more than twice the risk of dying from COVID-19 than White individuals.  Additionally, there are also socioeconomic vulnerabilities associated with COVID-19 mortality risk with individuals from disadvantaged backgrounds at highest risk. The pandemic and the enacted infection control/containment strategies have been especially challenging for intellectually and/or developmentally disabled (IDD) communities.⁵ At a time of extreme stress, individuals with very complex needs who benefit from high support and consistent routines were frequently provided neither. Furthermore, the community access restrictions enacted to limit the transmission of the virus revealed the social integration vulnerability many with IDD experience which increases their stress reactions (and all of its downstream ill effects) for a population already at high risk.

Social Integration Patterns for Individuals with Intellectual and/or Developmental Disabilities

Adults with IDD face greater challenges with social integration. Despite desiring a range of social relationships, they experience greater difficulty achieving true engagement due to skills deficits, inadequate supports, lack of opportunity, or some combinations of these factors. Lippold and Burns found that despite being involved in more community-based activities, adults with IDD have more restricted social networks than adults with physical disabilities. ⁶ Additionally, adults with physical disabilities had a greater balance of relationships with disabled and non-disabled people than adults with IDD. Social support and companionship for adults with IDD is mainly provided by family/caregivers, other individuals with IDD, and paid supports. For individuals with IDD, a key factor in determining successful social integration is the quality of their friendships—frequently by achieving greater balance in interactions with disabled and non-disabled peers.⁷

As the recent community restriction measures have painfully demonstrated, physical presence in a community through participating/attending community-based activities is not adequate for achieving true social integration in that community. As sites were restricted due to public health concerns, many individuals with IDD experienced heightened marginalization during the pandemic as their social integration was highly dependent on physically attending/accessing their familiar routine(s) rather than from the resultant relationships from community participation. In other words, much of their social connections relied on the scaffolding of shared experience (i.e. both doing the same the same thing at the same time) as would be seen with an acquaintance rather than shared friendship which would be less dependent on external structuring.

Evaluating Social Networks

Post-pandemic, opportunities to safely reintegrate individuals with IDD with their communities will create opportunity for reevaluating community participation activities and the needed supports to achieve greater social integration. Realizing the vulnerabilities that many individuals with IDD face due to their lack of social integration, supporting individuals to develop more robust social networks—comprised of different types of relationships with different types of social partners serving different needs and functions— is of high priority.

When considering social networks, there are a few key concepts to keep in mind.  Social integration refers to any type of social connection or relationships. Of note, this can range from the most superficial acquaintance to lifelong deep friendships. Social networks refer to the web of social relationships surrounding a person. This web crosses domains, settings, and includes relationships of varying degrees of integration.  Structural characteristics of social networks include^8,9:

Individuals with strong social networks display variability across these domains; in other words, an individual with a strong social network would have some relationships with high reciprocity and intensity and some with low.  The pandemic experience has demonstrated that many individuals with IDD social networks are dominated by relationships which are low in reciprocity, intensity, density, and bidirectionality, and high in formality and homogeneity leaving them highly vulnerable to social isolation when, due to public health measures, community settings and activities were not available to scaffold their social interactions.

Social relationships are collections of social behaviors superimposed over interpersonal emotions and attachment. These relationships can serve different social functions for an individual—that is what that relationship gives to the individual. Social capital refers to the impact of close, bidirectional relationships through providing high-value interactions and resources. Relationships which result in social capital are highly reciprocal and trusting. There are four primary forms of social capital: (1) emotional capital provides empathy, love, and caring; (2) instrumental capital provides tangible services or aid; (3) informational capital provides advice, suggestions, and information which can address problems; and (4) appraisal capital provides constructive feedback and affirmation.¹⁰ Relationships can provide more than one type of social capital and the type(s) of social capital can change with time and circumstance.

There are other potential social functions to relationships.  Social influence is the process by which thoughts, emotions, and/or actions are changed by the actions of others; this influence can be negative—such as imitating an acquaintance’s smoking behavior—or positive—such as exercising with a friend. Social hindrance is the process by which one’s attainment of goals is hindered by another’s expressed criticism or negative affect—such as an acquaintance making fun of the choice of a salad for lunch when someone is trying to lose weight. Companionship is sharing leisure and other activities with social partners—this is the function of many peer-peer relationships existing within highly structured social/leisure activities such as participating on a bowling team. Social support is giving and/or receiving support to another in the context of an ongoing relationship. This differs from social capital in that these relationships are not highly reciprocal and typically are unidirectional and highly formalized. Most consumer-support professional relationships have this function.

Relationships can have more than one function at any given time. Additionally, relationships are dynamic, and the functions of a relationship are likely to change as the relationship evolves. Most relationships which have a social capital function initially start with a lower function such as companionship or social influence; it takes time and shared experience to develop the reciprocity and trust needed for social capital. However, relationships with social capital are the ones most individuals find most meaningful and which enhance quality of life. Research has demonstrated that social capital is also most influential on health behaviors.^2,10,3

Supporting Social Networks

A helpful step in supporting the development and enhancement of social networks is to evaluate an individual’s current significant social partners and map how they potentially interact in his/her social network. Table 1 provides a tool to evaluate the structure, function, and potential social capital for an individual’s significant social relationships. Given the unique circumstances resulting from the pandemic, space is provided to provide assessment for relationship prior to enacted public health restrictions (“Pre-COVID-19”) as well as plan for the initial community reintegration (“Post-COVID-19”) and any long-term goals for relationship development (“Goal’). The individual should actively participate in the identification of significant social partners as well as plans/goals formation for potential relationship development as he/she is able. After completing these assessments for all significant relationships, any challenges to developing a strong social network for that person may be more apparent such as little variability in one or more structural components of the person’s network or little identified social capital. Table 2 provides opportunity to begin mapping the positive and negative components (contained across the sum collection of a person’s relationships) of the individual’s social network. Space is provided to document any identified missing components of the individual’s network; of note, any identification of missing components should reflect the individual’s self-determined social integration goals. This mapping might help identify goals for the individual and her/his support team. For example, increased planning for diversifying community exposures may be needed to address high homogeneity and low density across relationships. Similarly, identified social skill deficits interfering with the development of social capital can guide ISP or other goal-setting planning.

Typically, social network interventions in support of health behaviors take one of four form^8,9,11:

Social network interventions should always reflect the individual’s social integration priorities and are typically most productive when they utilize resources most meaningful to that person.

Case Example

Jillian is a 28-year-old woman with Autism Spectrum Disorder (ASD) and a mild Intellectual Disability (ID) who lives in a group home with 2 other individuals. Prior to pandemic public health restrictions, her high-value community activities included working part-time in a grocery store, attending a community center pottery class, and weekly shopping trips with her housemates. She has not done any of these activities for over 6 months. Her social interactions have been restricted to daily contact with her housemates, regular contact with her residential support staff, and weekly video calls with her sister and parents. Of note, she has not had contact with her coworkers from the grocery store—several of whom she identified as being “friends”—and people from the community center.

To prepare for eventual safe return to community-based activities, Jillian and her Supports Coordinator completed relationship matrix assessments for Jillian’s significant social relationships. Jillian identified her two housemates and two most favored staff as being the most significant relationships from her group home setting. She identified her sister, her parents, and one of her aunts as being the most significant relationships from her family. She stated that two of her coworkers and one of her peers from the pottery class as being significant social partners for her from her community activities.

After completing an individual assessment for each of the identified social partners, Jillian and her support coordinator mapped Jillian’s social network:

Function	Who: Relationship(s)	Where: Domain(s)	What: Supports to  Maintain Bond
Companionship	Maggie (housemate) Ella (peer) Teresa (coworker/friend) Bill (coworker)	Group home Community Center Work Work	No additional supports Transportation to CC Continued employment Continued employment
Positive Influence	George (staff) Bill (co-worker) Beth (sister)	Group home Work Family	Continued employment Continued employment Way to visit
Social Support	George (staff) Anita (staff) Beth (sister) Dominic (housemate)	Group home Family Group home	Continued  No additional supports employment Continued employment Way to visit
Emotional Capital	Mom Dad Aunt Sue	Family Family Extended family	Continued health Continued health Continued health, way to visit
Instrumental Capital	Mom Dad	Family Family	Continued health and financial stability (both)
Informational Capital	Mom Dad Aunt Sue	Family Family Extended family	Continued health Continued health Continued health, way to visit
Appraisal Capital	Mom	Family	Continued health
Negative Influence	Negative Influence	Negative Influence	Continued employment and overlapping shifts

They also identified Missing Components:

Function	Target Who	Target Where	Needed Supports and/or Skills
Increase all types of social capital	Beth	Family	Spend more time together and find more meaningful ways to interact
Find more positive influences	Ella	Community	Look for additional shared interests and ways to spend time together

After completing this exercise, Jillian and her team looked for additional ways of strengthening the two relationships which Jillian indicated were priorities for her. After having a discussion with Beth, the sisters decided to spend Saturday afternoons together as a way of increasing the reciprocity and intensity in their relationship which both admitted could be improved. Jillian was excited to share more of her sister’s life more routinely and soon added her sister’s boyfriend, Mike, to her list of positive influences as she got to know him better. Jillian’s Supports Coordinator worked with Ella’s supports broker to arrange for the two women to attend a Zumba class together which was also taught at the community center. Additionally, Jillian and Ella went out to dinner and a movie twice a month to spend time with each other outside of the community center. Ella also occasionally joined Beth and Jillian for lunch on Saturdays. At the three-month check-in when she and her Supports Coordinator remapped her social relationships, Jillian shared that she felt that her social network was both expanding and strengthening.

Conclusion

The pandemic has created physical, mental, and social health consequences for most Americans.  Due to their generally limited social networks, individuals with IDD may have been particularly vulnerable as the resulting social isolation created by needed public health measures led to significant social disengagement resulting in even greater overall health risks. Community reintegration efforts will allow for more thoughtful consideration of individual social integration goals and opportunity to address or strengthen identified relationship priorities. Examining the structural components of social relationships and then determining the function(s) of those relationships are critical to understanding an individual in the context of her/his social world. Mapping the interactions of these relationships helps identifies area(s) of strength and potential need. Supporting individuals with IDD to create robust social networks not only promotes higher quality of life and better health, it also can be highly rewarding work.

Social Network Evaluation and Planning Tools

Table 1.

Individual Relationship Matrix

Social Partner:	Pre-COVID-19	Post-COVID-19	Goal
STRUCTURE: (high/medium/low)
Reciprocity Shared support
Intensity Emotional closeness
Compexity Multiple functions
Formality Exists within
Density Interactions with other network members
Homogeneity How similar to you
Dispersion Near to where you live
Directionality Shared decision making
FUNCTION: Influence: Positive or negative Undermining: Interferes with goals Companionship: Shared activities and interests Support: Giving/receiving support in relationships
SOCIAL CAPITAL: (emotional/instrumental/ informational/ appraisal) For relationship high in reciprocity, intensity, and directionality

Table 2.

Positive Network Components

Function	Who: Relationship(s)	Where: Domain(s)	What: Supports to Maintain Bond
Companionship
Positive Influence
Social Support
Emotional Capital
Instrumental Capital
Informational Capital
Appraisal Capital

Negative Network Components

Function	Who: Relationship(s)	Where: Domain(s)	What:  Supports to Maintain Bond
Negative Influence
Social Hindrance

Missing or Underrepresented Network Components

Function	Target Who	Target Who	Target Who

References

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2.      Cacioppo JT, Cacioppo S. Social relationships and health: The toxic effects of perceived social isolation. Social and Personality Psychology Compass. 2014;8(2):58-72. doi:10.1111/spc3.12087.

3.      Holt-Lunstad J. Why social relationships are important for physical health: A systems approach to understanding and modifying risk and protection. Annu Rev Psychol. 2018 Jan 4; 69:437-458. doi: 10.1146/annurev-psych-122216-011902. Epub 2017 Oct 16. PMID: 29035688.

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7.      Green FP, Schleien SJ, Mactavish J, Benepe S. Nondisabled adults’ perceptions of relationships in the early stages of prearranged partnerships with peers with mental retardation. Education and Training in Mental Retardation and Developmental Disabilities, 1995;30: 91-108.

8.      Glanz K, Rimer BK, Viswanath K, Heaney CA, Israel BA. Chapter 9. In: Health Behavior and Health Education: Theory, Research, and Practice. San Francisco, CA: Jossey-Bass; 2008:189-210. https://edc.iums.ac.ir/files/hshe-soh/files/%5BKaren_Glanz%2C_Barbara_K._Rimer%2C_K._Viswanath%5D_Heal(BookFi.org)(1).pdf#page=227. Accessed January 4, 2021.

9.      Stough LM, Ducy EM, Holt JM. Changes in the social relationships of individuals with disabilities displaced by disaster. International Journal of Disaster Risk Reduction. 2017;24:474-481. doi:10.1016/j.ijdrr.2017.06.020

10.  Forrester-Jones R, Carpenter J, Coolen-Schrijner P, et al. The social networks of people with intellectual disability living in the community 12 Years after resettlement from long-stay hospitals. Journal of Applied Research in Intellectual Disabilities. 2006;19(4):285-295. doi:10.1111/j.1468-3148.2006.00263.x.

11.  Simplican SC, Leader G, Kosciulek J, Leahy M. Defining social inclusion of people with intellectual and developmental disabilities: An ecological model of social networks and community participation. Research in Developmental Disabilities . 2015;38:18-29. doi:10.1016/j.ridd.2014.10.008.

Biography

Dr. Murray is an associate professor of Psychiatry and Behavioral Health at Penn State College of Medicine. He is the director of the division of Autism Services for Penn State Health and the director of the central region ASERT collaborative.

Contact information