Upload
lambert-martin
View
212
Download
0
Tags:
Embed Size (px)
Citation preview
The exchange of social support
within the social networks of caregivers
Heather Coates, B.S., CCRPMasters Program in Health Informatics, Thesis Defense
IUPUI School of InformaticsAugust 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
Caregiver Burden
• Physical• Mental/
emotional• Social• Financial
Needs• 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
Social Support
• Four dimensions– Appraisal– Emotional– Informational– Instrumental
• Many standardized measures– Perception of quality
Caregiver Burden
• Physical• Mental/
emotional• Social• Financial
Needs• 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
“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
Demographicsn = 52
Social network questionsn = 17
Social support questionsn = 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• 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
Caregiver Burden
• Physical• Mental/
emotional• Social• Financial
Needs• 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
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
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.
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.