Informative Genetic counselling should provide accurate and unbiased information about the disorder. To do this effectively, it is necessary to find out the prior knowledge and perceptions of the client concerning SCD. Any myths, wrong or superstitious beliefs should be uncovered, corrected and then replaced with accurate information.
Depending on the level of understanding and the cultural background of the client, this informative process should be conducted in an appropriate language with illustrations and imagery to enhance the spoken word. More than one counselling session may be necessary and a summary of the session should be augmented with appropriate written materials, which the client can take home.
Confidentiality must be maintained so that the client will be assured that his privacy is respected and kept. This will encourage full disclosure and create a trusting and beneficial relationship with the counsellor.
Counselling is not about telling clients what to do. It is about giving them accurate information to help them reach their own decisions. Directing them to take a particular course of action is often counter-productive. If the client later regrets the decision he or she will resent the directive and blame the counsellor for it. Where the client decides to ignore the directive the relationship with the counsellor becomes threatened and may cease to exist. It is unethical for the counsellor to subtly direct the client by providing unbalanced and biased information.
The counsellor should empathise with and support the decisions taken by the client. The counsellor should help the client explore self, feelings, attitudes, and values in relation to the diagnosis. The client should feel secure enough to return and discuss possible consequences of his decision. The counsellor should refer the client to where he can obtain further information, social services or appropriate health care advice.
Objectives of genetic counselling
The counsellor should
1. Ensure that the client has obtained an accurate diagnosis of his condition
2. Ensure that the client is feeling well and comfortable and not at that moment in need of medical attention
3. Ensure that the client knows what the session is about and how long it might last
4. Take a family history pertaining to sickle cell or other inherited haemoglobin disorder
5. Establish the prior awareness, knowledge and perceptions of the client about SCD and sickle cell trait
6. Tactfully but firmly dispel myths and misinformation held by the client
7. Ensure that the client understands the inheritance of SCD and how it might affect him or his children depending on the Hb genotypes of their parents
8. Ensure that the client understands the likely clinical course and treatment needs of patients with SCD
9. Ensure that the client understands that carriers of the sickle cell gene are healthy persons who are unlikely to fall ill because of their status.
10. Inform the client about existing facilities for health and social care and provide a referral where necessary
11. Provide the client with a spectrum of careers that are compatible with living with SCD.
12. Encourage affected clients and their parents by referring to successful role models living with SCD in the community
13. Summarise the session, allow for questions, handover educational materials and make appointment for a follow up session.
The importance of research is underestimated in Nigeria due largely perhaps to our under-development. There would be no progress without research into all aspects of sickle cell disorder. But for the research carried out in America, the present state of knowledge which has improved the quality of life and life- expectancy in sickle cell anaemia would not have been possible. As the country with the largest burden and blessed with many bright scientists, we need the financial resources to devote to research that should convert sickle cell anaemia to a disorder like hypertension which is compatible with normal duration and quality of life.
- Development of a National Policy on SCD
The SCFN has constituted a Nigerian Sickle Cell Expert Advisory Committee.
The committee’s first objective is to consider, initiate and revise policy and strategies appropriate to the management, prevention and control of sickle cell disorder in Nigeria.
- The First World Sickle Cell Day – 19 June, 2009
Following decades of advocacy, the United Nations in December 2008 resolved to recognise sickle cell anaemia as a public health problem and to mark the World Sickle Cell Day (WSCD) on June 19, every year, starting from 2009. The intention is that the WSCD will create awareness and draw attention of governments, donors and all stake holders every year, to what has been achieved and what needs to be done to address SCD in each of the affected countries.
- Nothing good comes easy and lofty goals must be adequately funded. (sickle cell)
It is remarkable that over 80% of the annual budget of the Sickle Cell Association of America is derived from thousands of small individual donations rather than from a few large corporate donations.
Many Nigerians agree that we should tackle our national burden of SCD, but not many regard themselves as part of the solution. A friend donated an unsolicited cheque of half a million naira to the SCFN last year. Another couple spearheaded the contribution of a large generator to the National Sickle Cell Centre.
Contribution of professional services of solicitors, auditors, health educationists and publicity specialists are also welcome. We hope that with support to the National and State Sickle Cell Centres as in Owerri and Benin and others yet to be developed, we can all help show that Nigerians are capable of competently and sustainably addressing their problems. We hope that many Nigerians will thus be encouraged to contribute to reducing the national burden of sickle cell disorder in our country by supporting and sustaining the effort of the Sickle Cell Foundation and accredited collaborators in each State of the Federal Republic of Nigeria.