The exchange of social support via social networks of maternal caregivers for children with Autism Spectrum Disorders (ASD)
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defense presentation for MS in Health Informatics at IUPUI
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The exchange of social support via social networks of maternal caregivers for children with Autism Spectrum Disorders (ASD)
- 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. Capture and describe the basic features/characteristics of their social network structure. What types of social support are embedded within these social networks? What relationships exist between participant demographics and social support? What relationships exist between participant demographics and the structural characteristics of the network? 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
- 11. Bathing (ADL)
- 12. Getting into/out of seat (ADL)
- 13. Transportation
- 15. Mental/emotional
- 16. Social
- 18. Clothing
- 19. Shelter
- 20. Education
- 25. Bathing (ADL)
- 26. Getting into/out of seat (ADL)
- 27. Transportation
- 29. Emotional
- 30. Informational
- 32. Mental/emotional
- 33. Social
- 35. Clothing
- 36. Shelter
- 37. Education
- 40. Research design
- 43. 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
- 44. 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
- 45. 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)
- 46. Results
- 47. Participant response Demographics n = 52 Social network questions n = 17 Social support questions n = 17
- 48. 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
- 49. 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
- 50. 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
- 57. 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 Average number of connections for dimensions of social support
- 58. 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)
- 59. 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
- 60. 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
- 61. CONCLUSIONS
- 62. 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
- 65. Bathing (ADL)
- 66. Getting into/out of seat (ADL)
- 67. Transportation
- 69. Emotional
- 70. Informational
- 72. Mental/emotional
- 73. Social
- 75. Clothing
- 76. Shelter
- 77. Education
- 81. Agneessens, F., Waege, H., & Lievens, J. (2006). Diversity in social support by role relations: A typology. Social Networks, 28, 427-441. Ashida, S., & Heaney, C. A. (2008). Differential associations of social support and social connectedness with structural features of social networks and the health status of older adults. Journal of Aging and Health, 20(7), 872-893. Hampton, K. N., Sessions, L. F., & Her, E. J. (2009). Social Isolation and New Technology - How the internet and mobile phones impact Americans ’ social networks. Retrieved from http://pewinternet.org/Reports/2009/18--Social-Isolation-and-New-Technology.aspx. Lin, C. H. (2009). Exploring facets of a social network to explicate the status of social support and its effects on stress. Social Behavior and Personality, 37(5), 701-710. National Alliance for Caregiving. (2009). Caregivers of children: A focused look at those caring for a child with special needs under the age of 18 Caregiving in the U.S. 2009. Bethesda, MD: National Alliance for Caregiving.
- 82. Phillips, A. C., Gallagher, S., Hunt, K., Der, G., & Carroll, D. (2009). Symptoms of depression in non-routine caregivers: The role of caregiver strain and burden. British Journal of Clinical Psychology, 48, 335-346. Sarasohn-Kahn, J. (2008). The wisdom of patients: Health care meets online social media ihealthreports. Oakland, CA: California HealthCare Foundation. Tadema, A. C., & Vlaskamp, C. (2009). The time and effort in taking care for children with profound intellectual and multiple disabilities: A study on care load and support. British Journal of Learning Disabilities, 38, 41-48. Tsai, S.-M., & Wang, H.-H. (2009). The relationship between caregiver's strain and social support among mothers with intellectually disabled children. Journal of Clinical Nursing, 18, 539-548. Wasserman, S., & Faust, K. (1994). Social Network Analysis: Methods and Applications. Cambridge: Cambridge University Press.
Hinweis der Redaktion
- About me-today, I’m completing the last requirement for the dual-degree program for library science and health informatics-interested in health sciences librarianship, particularly usability & accessibility of web-based information resources, reference & instruction, and librarians’ role in supporting health research
- In the next 20 minutes or so, I’ll provide a brief overview of my thesis research. While working at the Christian Sarkine Autism Treatment Center, I provided consumer health information for parents of children with ASD. I became interested in the challenges these parents faced and decided to explore the ways that they receive and share health information.
- Research questions were basically to characterize the structure and function of caregivers’ social support networks
- ASD: core characteristic across the spectrum is meaningful impairment in social relating, but children across the spectrum often face multiple issues particularly developmental delays and behavioral issues
- According to a 2009 study by the National Alliance for Caregiving:-typical caregiver for a child with special needs is 40 years old, has been caring for that child for 4.2 years, and spends 30 hours per week providing care-25% of caregivers spend more than 40 hours per week
- My review of the literature suggests that the caregiving activities commonly reported by caregivers of children with special needs include the following. These caregiving needs result from the functional independence of the child.The literature on caregiver burden suggests that it is felt in four ways – physically, mentally/emotionally, socially, and financially.
- Social support has been studied in many contexts and populations, perhaps most commonly as a type of social capital. Ashida and Heaney also describe it as a functional characteristic of social networks.
- Several studies including Lin (2009) & Tsai & Wang (2009) report results suggesting that social support plays a role in mediating the effect of caregiving strain or burden on caregivers. Specifically, Tsai & Wang report that the mother’s health status, social support, time spent as a caregiver, and the child’s degree of dependent daily living activity were significant predictors of mothers’ strain.
- In summary, social support has been shown to play an important role in the social networks of many groups of people.
- -social network analysis is a set of techniques that allow researchers to examine the exchanges or relations between actors-those exchanges or relationships can be anything from a vague conception of “close friends” to specific exchanges such as loaning money, providing transportation, or childcare-Ashida & Heaney describe the functional characteristics of social network systems as social connectedness, social support, social influence, or social comparison-for the purposes of this study, participants were asked to name people who: >help them care for their child >share information with them about ASDs >they share information with about ASDs >who provide emotional support
- For example, we can look a person’s social network and analyze the people in their lives in a variety of ways – by self-described relationships (best friends), societal norms (colleagues, kin, neighbors), and specific behaviors (weekly contact via phone or email, sharing childcare responsibilities, exchanging emotional support)-a person’s social network based on weekly interactions >red indicates the ego >yellow dots indicate close friends >green dots indicate non-close friends >blue indicates family-the Pew Social Isolation study asked participants to provide names of people “with whom [they] discussed important matters over the last six months.” and who were considered “especially significant” in their lives
- -describe recruitment challenges
- -survey was created in SurveyGizmo
- How do these characteristics compare with other populations?Pew Social Isolation study -face-to-face interactions trumps all other types -many internet technologies are used as much for local contact as for distant communication -some demographics such as years of education are associated with larger core social networks, while those with more formal education are more likely to use technology -those who use mobile phones and instant messaging (chat) have larger core social networks -f2f, telephones (landline & mobile), and text messaging are used most frequently with local social ties -email, SNS, and chat/IM are used as frequently to maintain local and distant ties -on average, internet and mobile phone users are less likely to have no confidants and tend to have more people with whom they discuss important matters (core social network) -the compound influence of using ICT is more strongly correlated with network size than other demographics such as race, gender, and education
- -as these summary sociograms demonstrate, participants had varying levels of connectedness and multiplexity >each network member is represented by a node >each tie between two nodes is represented by a line >the width of the line represents multiplexity (or use of multiple technologies with a particular node)
- No caregiver characteristics were significantly associated or correlated with social support; may be due to small sample size and Type II errorPossibly a direct relationship between adaptive child functioning and parent need for social support
- *smaller sub-sample reported use of texting-education and employment have been shown -results for association may be useful variables in constructing predictive models for caregivers at risk
- The only negative correlations detected were for chat and texting networks:-negative correlation chat network size and advice, but sub-sample size was very small-negative correlation between texting network size and sharing information, but the sub-sample size was quite small-negative correlation between chat network density and network density-negative correlations between texting network density and sharing information and emotional support*mention the correlations that approach significance; these may not have been strong enough due to small sample size
- Social network data for actor role and proximityParent report of child needs (ADLs)Perceptions of caregiver burdenLongitudinal study >child-caregiver networks - who provides what types of care over time?>caregiver social support networks - from diagnosis to adulthood; how do these change?>child & caregiver social networks – is there a relationship between the two?These results in combination with insights from large-scale studies such as the Pew Social Isolation study can provide useful insight into the ways that caregivers access health information and perhaps facilitate the development of more effective and efficient mechanisms to distribute quality health information.