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Counseling families when providing a diagnosis of impairment/disability in “Congenital Differences” Project Case study 1: a mother and child with hydrocephalus She was invited to the conference to share her ideas: she said that she received the counseling regarding her child’s situation from doctors but the more she spoke the more we realised that the quality of counseling needs to be improved: she has no idea about her child long term outcome Case study 2: a women with suspected rubella infection in early pregnancy The project was approached by a woman and she told us she feels confused about what to do Counselling provided by ultrasound doctor The ultrasound doctor is too busy to provide counseling so the women was referred to genetic counseling department Counseling provided by the genetic counseling department Although they have skills of counseling, the guidelines about rubella infection is not clear At the provincial level, it is difficult to provide such counseling, so how about at the district or commune level? What is the objective of the project to improve counseling Support parents Training health workers on different kinds of counseling Create awareness raising on need for counseling To organise a workshop with patterns to have clear guideline on rubella infection Supporting parents Communication is important Most parents will grieve for the loss of the ‘healthy’ baby Feelings need to be discussed and acknowledged Non – directive counselling Non – directive counselling is when the clinician attempts to help families arrive at the best decisions from personal perspectives and are not guiding them towards any particular decision Why is non – directive counselling important? Families can feel regretful, guilty or angry if they take the decision of the doctor and it conflicts with their own religious or moral ideals Non – directive counseling “helping clients reach a decision wisely rather than reach a wise decision” means helping families to come to a decision that they believe in Directive approach The intrinsic danger of using a directive approach is the opportunity for the doctor/counsellor to insinuate his or her own religious or other beliefs into the counselling. This can cause families to take decisions that are not completely theirs and they may later feel regretful and angry. Communication The day when the anxious, waiting couple learns that their fetus has a malformation or genetic disorder will live on in their memories forever Communication When bad news is given, people rarely remember the details of what was said, but they will always remember the way it was said Communication Some parents with lower level of education do not understand what a doctor says or provides guidelines to take care the child: Information given by a doctor is not clear and too technical DIFFICULTIES Doctors, nurses’ attitude: they said they are busy Lack of communication skills Provide the counseling: complicated when saying who will take the final responsibility. Idea of blaming from families Facilities: they do not have separated counseling room in the hospital system WHAT CAN THE PROJECT DO? Provide the training on communication skills for doctors, nurses: in the external evaluation of the project all the focus group of health workers report that they need this training Upgrade and equip the counseling room in the hospital What can the project do? Organise the workshop to ensure that clear guideline on Rubella infection in pregnancy and other issues exist In all trainings on early detection and ultrasound there must be included the significant part of counseling Thank you