The exchange of social support via social networks of maternal caregivers for children with Autism...

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

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