Soumil PatwardhanSeth G. S. Medical College

IntroductionWhy information therapy for patients is the

need of the hourSupport groups an important component of

this initiative.How life-threatening and disabling disorders

like Duchenne Muscular Dystrophy, Huntington’s Chorea and Down’s syndrome highlight the need of such support groups.

DefinitionSupport Group (syn. Self Help Group)

‘A support group or self help group is a voluntary organization, usually of peers, who have come together for mutual help and support, in satisfying a common need, overcoming a common handicap or a life-threatening problem and bringing about desired social or personal change or both’

Types of Support groupsProfessional Types These are established and managed by

professionals like doctors, nurses or other health workers who may or may not have any personal experience with the concerned condition.

Peer Types These are established by past/present

sufferers of the condition or by people, with kith/kin who have suffered or friends who have come in close contact with sufferers of the condition.

History of Support GroupsOne of the first support groups was

Alcoholics Anonymous, started in 1935.1960s – Civil rights movements, people’s

awareness led to development of the support group movement.

1970s – Mass movements became more local movements addressing current local conditions and difficulties

1976s – Literature and scientific works published on the support group movement.

History (contd.)1980s – Self help group systems established.

Information and referral services provided to public enabling easy access to such groups and inter-communication between them.

Another feature in the ’80s was the development of international networks of support groups thus widening the horizons.

1990s – Online support groups established.

Importance of Support GroupsSources of InformationWelfare – People meet individuals suffering

from similar conditions.Political – Help rally for getting a point acrossLegal – Protection and upgrading privacy

laws/protects members from discriminationResearch – Members form a cohort for

researchEstablishing basic treatment guidelinesProvision of funds/resources and facilities.

Certain aspects to look out for…Accountability – May be lacking in some

groups

Too few people running the show with a very few active members.

Well known disorders may get a much larger share of attention from the groups as well as people with lesser known conditions and its sufferers being left out.

New trends – Online groupsMore convenient

Widespread

Greater availability of information

Greater interaction between people

How can Society ‘support’ Support Groups

Regular participation of members of societyVolunteering in social workProviding funds and donationsProviding words of encouragementInteraction of society members with sufferers

of the particular condition that the support group is associated with.

Support Groups in Mumbai & beyond

http://www.karmayog.com/lists/support.htmhttp://groups.yahoo.com/group/karmayog/

message/2350http://www.dailystrength.org/support-groupshttp://www.rarechromo.org/html/home.asp

Future…

The future holds great promises with worldwide networking, widespread participation, increasing funds, bringing members from different countries together with hopes of better treatment options and strategies.

‘Ordinary riches can be stolen, real riches cannot. In your soul, are infinitely precious things that cannot be taken from you’

- Oscar Wilde