internet parent support groups

[Guest guest]

Hi,

a while ago I took part in a survey and a few weeks ago I received

the following message and feel like I should share it with all of you.

Peace

Torsten

My dissertation (Factors Related to use of Internet Parent Support

Groups by Primary Caregivers of a Child with Special Health Care

Needs) was finally published in May, 2002!! Here is the abstract

plus my tribute to you as part of my " Acknowledgements. " If you

would like more detail, I can send attachments of the entire thing if

you tell me what format you prefer, or you can go to a university &

request it from Interlibrary Loan. I also attached the details of

what everyone said about recommended/non-recommended IPSGs. They are

in Word 2000, so if you cannot open the files, let me know.

I plan to publish some articles so I welcome any comments/suggestions

you may have. What periodical would you read to get information like

this?

Thank you again for your support of this project. Hope it was worth

it to you.

Respectfully,

Lynda Baum, PhD, APRN, CS Psych/MH

lyndabaum@...

ABSTRACT

The purpose of this study was to explore and describe factors related

to use

of Internet parent support groups (IPSG) by primary caregivers of a

child

with special health care needs (CSHCN) at home. The Transactional

Model of

Stress, Coping and Adaptation was used as a framework for developing

an

Internet survey which was completed by a sample of 114 primary

caregivers,

caring for 140 CSHCN, using over 100 different Internet parent

support

groups. Power analysis for correlations with a moderate effect size

required a minimum sample size of 85 (a = >.05, b = .80).

Retrospective

self-report was in the form of both narrative and Likert type

ratings.

Outcome variables included perceived satisfaction, social support,

change of

view, positive and negative emotion, somatic health, physical

functioning,

family relationships, and wellbeing.

The typical participant was a White, well-educated American mother in

her

late 30s caring for a 3-year-old male with a chronic disability.

Participants used a variety of coping strategies, but unusually high

optimism scores may have skewed perceptions. The top two motives for

seeking online social support were " to get usable ideas " (99%)

and " to help

others " (94%). The majority not only obtained what they sought, but

found

more than expected in terms of insight and people to trust. The

highest

ranking sources of emotional support were family (52%), with IPSGs as

a

strong second.

Strongest relationships (p<.001) with satisfaction were finding

people to

trust (r=.44) and improved caregiver-CSHCN relationship (r=.42).

Finding

people to trust was more powerfully related to positive feelings than

any

other type of support. The top three things having the most long-

lasting

effect on wellbeing were finding people with similar circumstances

(79%),

receiving guidance and information (59%), and understanding and

acceptance.

The majority agreed their viewpoint changed with IPSG use (64%).

IPSGs

primarily generated positive feelings, especially hope (87%). They

were

associated with improved physical functioning (73%), mostly did not

interfere with sleep (61%), or result in neglect of the family

(68%).

Caregivers recommended participating in an IPSG as soon as possible,

and

many recommended belonging to more than one. It appears that IPSGs

may be

an important adjunct for social support for primary caregivers of a

CSHCN,

but further research is needed to establish their efficacy and

function.

TRIBUTE

I especially wish to acknowledge the extraordinary people who took

time out

of their hectic lives to participate in my study. I am in awe of

their

strength and serenity in the face of adversity. They were as

encouraging,

optimistic, and grateful toward me as they are toward life, and it

was truly

a joy and privilege to work with them.