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Report
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
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
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.
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?
BACKGROUND
Care recipients
National Alliance for Caregiving, 2009
Caregiving Activities
•
•
•
•
•
•
Caregiver
Burden
•
•
•
•
Physical
Mental/emotional
Social
Financial
Feeding (ADL)
Getting dressed (ADL)
Bathing (ADL)
Getting into/out of seat (ADL)
Transportation
Coordination of therapies
Needs
•
•
•
•
•
•
Food
Clothing
Shelter
Education
Treatment &
Therapies
Socialization
Social Support
• Four dimensions
– Appraisal
– Emotional
– Informational
– Instrumental
• Many standardized measures
– Perception of quality
Caregiving Activities
•
•
•
•
•
•
Caregiver
Burden
•
•
•
•
Physical
Mental/emotional
Social
Financial
Feeding (ADL)
Getting dressed (ADL)
Bathing (ADL)
Getting into/out of seat (ADL)
Transportation
Coordination of therapies
Social Support
•
•
•
•
Appraisal
Emotional
Informational
Instrumental
Needs
•
•
•
•
•
•
Food
Clothing
Shelter
Education
Treatment &
Therapies
Socialization
“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
RESEARCH
DESIGN
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
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
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)
RESULTS
Participant response
Demographics
n = 52
Social network questions
n = 17
Social support questions
n = 17
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
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
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
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
Mean Standard
Deviation
Get info
2.76
2.33
Share info
4.94
2.86
Advice
(appraisal)
3.12
2.74
Emotional
4.47
2.98
Assistance
(instrumental)
3.65
2.52
Average number of connections for
dimensions of social support
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)
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
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
CONCLUSIONS
Evaluating the evidence
Strengths
Limitations
• Examines an understudied
population
• Information in context – as
one piece of social support
• Child & caregiver
characteristics
• Suggests characteristics for
use in predictive models
•
•
•
•
•
Small sample size
Convenience sample
Typographical error in survey
Missing data (non-responders)
Limited social network data
– Roles
– Proximity
• Limited characterization of
networks
Caregiving Activities
•
•
•
•
•
•
Caregiver
Burden
•
•
•
•
Physical
Mental/emotional
Social
Financial
Feeding (ADL)
Getting dressed (ADL)
Bathing (ADL)
Getting into/out of seat (ADL)
Transportation
Coordination of therapies
Social Support
•
•
•
•
Appraisal
Emotional
Informational
Instrumental
Needs
•
•
•
•
•
•
Food
Clothing
Shelter
Education
Treatment &
Therapies
Socialization
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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Hampton, K. N., Sessions, L. F., & Her, E. J. (2009). Social Isolation and New
Technology - How the internet and mobile phones impact Americans ’
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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
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Caregiving.
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.
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children with profound intellectual and multiple disabilities: A study on
care load and support. British Journal of Learning Disabilities, 38, 41-48.
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