Counseling families Counseling families when providing a when providing a

diagnosis of diagnosis of impairment/disabilitimpairment/disabilit

yy

in “Congenital in “Congenital Differences” Project Differences” Project

Case study 1: a mother Case study 1: a mother and child with and child with hydrocephalushydrocephalus She was invited to the She was invited to the

conference to share conference to share her ideas: she said her ideas: she said that she received the that she received the counseling regarding counseling regarding her child’s situation her child’s situation from doctors but the from doctors but the more she spoke the more she spoke the more we realised that more we realised that the quality of the quality of counseling needs to be counseling needs to be improved: she has no improved: she has no idea about her child idea about her child long term outcomelong term outcome

Case study 2: a women with Case study 2: a women with suspected rubella infection in suspected rubella infection in

early pregnancyearly pregnancy The project was The project was

approached by a approached by a woman and she woman and she told us she feels told us she feels confused about confused about what to dowhat to do

Counselling provided by Counselling provided by ultrasound doctorultrasound doctor

The ultrasound The ultrasound doctor is too busy doctor is too busy to provide to provide counseling so the counseling so the women was women was referred to genetic referred to genetic counseling counseling departmentdepartment

Counseling provided by the Counseling provided by the genetic counseling genetic counseling

departmentdepartment Although they have skills of Although they have skills of

counseling, the guidelines about counseling, the guidelines about rubella infection is not clearrubella infection is not clear

At the provincial level, it is difficult to At the provincial level, it is difficult to provide such counseling, so how provide such counseling, so how about at the district or commune about at the district or commune level?level?

What is the objective of the What is the objective of the project to improve project to improve

counselingcounseling Support parentsSupport parents Training health workers on different Training health workers on different

kinds of counselingkinds of counseling Create awareness raising on need for Create awareness raising on need for

counselingcounseling To organise a workshop with patterns To organise a workshop with patterns

to have clear guideline on rubella to have clear guideline on rubella infection infection

Supporting parentsSupporting parents

Communication is Communication is importantimportant

Most parents will Most parents will grieve for the loss of grieve for the loss of the ‘healthy’ babythe ‘healthy’ baby

Feelings need to be Feelings need to be discussed and discussed and acknowledgedacknowledged

Non – directive Non – directive counselling is when counselling is when the clinician the clinician attempts attempts to help families arrive to help families arrive at the best decisions at the best decisions from personal from personal perspectives and are perspectives and are not guiding them not guiding them towards any towards any particular decisionparticular decision

Non – directive counsellingNon – directive counselling

Why is non – directive Why is non – directive counselling important?counselling important?

Families can feel regretful, Families can feel regretful, guilty or angry if they take guilty or angry if they take the decision of the doctor the decision of the doctor and it conflicts with their and it conflicts with their own religious or moral own religious or moral idealsideals

Non – directive counselingNon – directive counseling

““helping clients helping clients reach a decision reach a decision wisely rather than wisely rather than reach a wise reach a wise decision” means decision” means helping families to helping families to come to a come to a decision that they decision that they believe inbelieve in

Directive approachDirective approach

The intrinsic danger of using a The intrinsic danger of using a directive approach is the directive approach is the opportunity for the opportunity for the doctor/counsellor to insinuate doctor/counsellor to insinuate his or her own religious or his or her own religious or other beliefs into the other beliefs into the counselling. This can cause counselling. This can cause families to take decisions that families to take decisions that are not completely theirs and are not completely theirs and they may later feel regretful they may later feel regretful and angry.and angry.

CommunicationCommunication

The day when the The day when the anxious, waiting anxious, waiting couple learns that couple learns that their fetus has a their fetus has a malformation or malformation or genetic disorder genetic disorder will live on in their will live on in their memories forevermemories forever

CommunicationCommunication

When bad news When bad news is given, people is given, people rarely remember rarely remember the details of the details of what was said, what was said, but they will but they will always always remember the remember the way it was saidway it was said

CommunicationCommunication

Some parents with lower level of Some parents with lower level of education do not understand what a education do not understand what a doctor says or provides guidelines to doctor says or provides guidelines to take care the child: take care the child:

Information given by a doctor is not Information given by a doctor is not clear and too technicalclear and too technical

DIFFICULTIESDIFFICULTIES Doctors, nurses’ attitude: they said Doctors, nurses’ attitude: they said

they are busythey are busy Lack of communication skillsLack of communication skills Provide the counseling: complicated Provide the counseling: complicated

when saying who will take the final when saying who will take the final responsibility. Idea of blaming from responsibility. Idea of blaming from familiesfamilies

Facilities: they do not have separated Facilities: they do not have separated counseling room in the hospital systemcounseling room in the hospital system

WHAT CAN THE PROJECT WHAT CAN THE PROJECT DO?DO?

Provide the training on Provide the training on communication skills for doctors, communication skills for doctors, nurses: in the external evaluation of nurses: in the external evaluation of the project all the focus group of the project all the focus group of health workers report that they need health workers report that they need this training this training

Upgrade and equip the counseling Upgrade and equip the counseling room in the hospitalroom in the hospital

What can the project do?What can the project do?

Organise the workshop to ensure Organise the workshop to ensure that clear guideline on Rubella that clear guideline on Rubella infection in pregnancy and other infection in pregnancy and other issues existissues exist

In all trainings on early detection and In all trainings on early detection and ultrasound there must be included ultrasound there must be included the significant part of counselingthe significant part of counseling

Thank youThank you