1. SECTIONS:
2. preface & acknowledgements
3. genetics at a glance
4. contacts, support & testing
5. testing & pregnancy
6. newborn screening
7. cancer in the family
8. cardiovascular conditions
9. chromosomal conditions
10. clotting & bleeding conditions
11. cystic fibrosis
12. diabetes
13. fragile X syndrome and other causes of developmental delay
14. haemoglobinopathies
15. hereditary haemochromatosis
16. neurofibromatosis
17. neurological conditions
18. psychiatric conditions
19. genetics in practice
20. emerging genetic technologies
21. glossary

Support groups

 

Community perspective

 

In the development of the Genetics in Family Medicine handbook, a focus group study was conducted exploring Australian consumers’ views regarding the management of genetic conditions by GPs. This was an exploration of how people living with genetic conditions view GPs as unique health care providers: what is done well and what could be improved upon regarding management of genetic conditions. The following points have been drawn from the study’s results as being specific to the GP’s role regarding support groups.

 

GPs play a unique role:

1. As the first point of contact for patients, GPs fill a certain ‘gate-keeping’ role. In this sense, their direction regarding specialist and support interventions is very important.
2. GPs are expected to treat patients and their families in a holistic manner – covering specific genetic, other medical and psychosocial issues. Referral to support groups is part of such holistic treatment, promoting overall wellbeing in the patient and family.

 

GPs could improve their use of support groups:

1. Overall it was considered that GPs need to be more aware of support groups and networks that could benefit their patients and have relevant information on hand to refer patients and their families to relevant groups.
2. Through being aware of the wider community it is hoped that GPs are able to include and appreciate the benefits of support groups as part of their everyday practice.

 

For contact details of some key support groups, refer to Table 1, Peak Bodies of the Australian Genetic Alliance.

 

You can find out more about support groups from the umbrella body for support groups, the Australasian Genetic Alliance, and refer your patients and their families to their website www.australasiangeneticalliance.org.au or their email info@australasiangeneticalliance

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