1. The exchange of social support within the social networks of caregivers Heather Coates, B.S., CCRP Masters Program in Health Informatics, Thesis Defense IUPUI School of Informatics August 10, 2010

3. Problem Statement 16.8 million American caregivers for children with special needs Prevalence of ASD in the US averages to 1 in 110 children Cost of providing care for a child with special needs ranges from 2.5-20 times that of a typical child Caregiver burden – physical, mental/ emotional, social Families at risk for reduced ability to provide care due to caregiver burden Social support may be a mediator for the effects of caregiver burden

4. The aim of this study was to explore the relationships between the functional (i.e., four dimensions of social support) and the structural (i.e., ties and density) characteristics of the social networks of mothers providing care for children who have been diagnosed with one of the three Autism Spectrum Disorders, with the ultimate goal of developing interventions and services that meet their particular health information needs.

5. 1.Capture and describe the basic features/characteristics of their social network structure. 2.What types of social support are embedded within these social networks? 3.What relationships exist between participant demographics and social support? 4.What relationships exist between participant demographics and the structural characteristics of the network? 5.What relationships exist between the provision of specific types of social support and the structural characteristics of the network?

6. BACKGROUND

7. Care recipients National Alliance for Caregiving, 2009

9. Caregiver Burden Physical Mental/emotional Social FinancialNeeds Food Clothing Shelter Education Treatment & Therapies Socialization Caregiving Activities Feeding (ADL) Getting dressed (ADL) Bathing (ADL) Getting into/out of seat (ADL) Transportation Coordination of therapies

10. Social Support Four dimensions – Appraisal – Emotional – Informational – Instrumental Many standardized measures – Perception of quality

11. Caregiver Burden Physical Mental/emotional Social FinancialNeeds Food Clothing Shelter Education Treatment & Therapies Socialization Social Support Appraisal Emotional Informational Instrumental Caregiving Activities Feeding (ADL) Getting dressed (ADL) Bathing (ADL) Getting into/out of seat (ADL) Transportation Coordination of therapies

12. “A stable and supportive social network improves health outcomes for people with a wide range of conditions from heart failure to post-partum depression.” Sarasohn-Kahn, 2008

13. RESEARCH DESIGN

16. Population & Sample Mothers providing care for one or more children diagnosed with an Autism Spectrum Disorder Convenience sample of Indiana residents Recruited via two email distribution lists including approximately 1,500 parents

17. Interview 60-90 minute interview (07/09-12/09) Semi-structured – Qualitative analysis (Content analysis) Health challenges within past 6 months Related information seeking strategies and resources – Quantitative analysis Demographics: participant & child characteristics Technology access & use Social network structure & function

18. Online survey 20-25 minute survey (01/10-02/10) Quantitative data – Demographics (including technology) Participant & child characteristics – Social network structure – Social support (social network function)

19. RESULTS

20. Participant response Demographics n = 52 Social network questions n = 17 Social support questions n = 17

21. Who were the participants? Aged 35-44 Some college education (all completed HS) Married Employed full- or part-time Caucasian, non-Hispanic Living in Central Indiana

22. Technology access & use All had home computers with internet 83% use the internet (browsers) daily Connect via some type of broadband 44% use the internet (browsers) 1-7 hours per week 31% use the internet (browsers) 8-14 hours per week

23. Research Question 1: Characteristics of network structure wide range of network sizes (3-11) density of respondents’ networks is relatively low ties are generally multiplex most participants use at least three technologies to communicate with members

30. Research Question 2: social support in networks caregivers engage in sharing informational support more than they receive it appraisal support (advice) is the least prevalent dimension all dimensions of social support are embedded MeanStandard Deviation Get info 2.762.33 Share info 4.942.86 Advice (appraisal) 3.122.74 Emotional 4.472.98 Assistance (instrumental) 3.652.52 Average number of connections for dimensions of social support

31. Research Question 3: demographics and social support Child age (significant for all dimensions and social support as a whole) Age of diagnosis (significant for receiving info, emotional support, advice, and social support as a whole)

32. Research Question 4: demographics & network structure Correlations – Participant age (association) – Age of diagnosis (correlation) – Time spent on internet (Texting network) Associations – Education – Employment – Child age – Age of diagnosis

33. Research Question 5: network structure & network function Correlations – Network size (all positive) Instrumental support with email, telephone, f2f, SNS and whole networks Emotional support with email and SNS networks Sharing information with f2f, telephone, and whole networks Social support as a whole with email, f2f, and whole networks – Network density Assistance with SNS network Emotional support with email network

34. CONCLUSIONS

35. Evaluating the evidence Strengths Examines an understudied population Information in context – as one piece of social support Child & caregiver characteristics Suggests characteristics for use in predictive models Limitations Small sample size Convenience sample Typographical error in survey Missing data (non-responders) Limited social network data – Roles – Proximity Limited characterization of networks

36. Caregiver Burden Physical Mental/emotional Social FinancialNeeds Food Clothing Shelter Education Treatment & Therapies Socialization Social Support Appraisal Emotional Informational Instrumental Caregiving Activities Feeding (ADL) Getting dressed (ADL) Bathing (ADL) Getting into/out of seat (ADL) Transportation Coordination of therapies

37. Future Research Social network data for actor role, proximity, frequency of interactions Parent report of child needs (ADLs) Perceptions of caregiver burden Longitudinal study – Child-caregiver networks – Caregiver social support networks – Child & caregiver social networks

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