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.