Component Task: Genetic Counselling

This is a communication process between the paediatric nurse and parents/family to address human problems associated with the occurrence, recurrence of hereditary disorders in the family. It helps to provide appropriate information and advice to help solve or adapt to health problems that occur in individuals, couples and families.

Aims

·         Diagnose problem, its implications in relation to prognosis and possible treatment

·         Determine the mode of inheritance and the risk of developing or transmitting the disorder

·         Discuss available treatment options

·         Provide psychological support

·         Prevent complications

Types

·         Prospective genetic counselling

·         Retrospective genetic counselling

Requirements

·         Pen and notepad

·         Folder (Manual/electronic)

·         Laboratory results

·         Comfortable environment

·         Screen (if necessary)

·         Examination gloves

·         Examination couch

Steps

1.        Establish rapport with the child, parent/family (Refer to steps)

2.      Explain the need for counselling to the child, parent/family (Refer to steps)

3.      Perform five moments of hand hygiene

4.      Provide privacy 6. Obtain family history and enquire about consanguinity

5.      Obtain accurate prenatal, natal, postnatal and medical history of the disorder

6.      Prepare a family tree or pedigree chart for three generations

7.       Perform a physical assessment of the child and record

8.      Confirm diagnosis and relevant investigations done

9.      Deliver and explain test result in a non-biased manner using simple language to be able to understand

10.    Remain non judgmental

11.      Clear up any misconceptions and allay feelings of guilt

12.    Enhance and reinforce self-image and self-worth of child, parent/family

13.    Encourage interaction with other known family on such conditions

14.    Assess child, parent/family’s level of understanding throughout the consultation

15.    Give the child, parent/family sufficient time to deliberate and seek further relevant input if necessary

16.    Advice/give information on support groups available

17.    Encourage them to accept the malformed child

18.    Offer continuous emotional support to the child, parent/family

19.    Arrange for follow up visits or call for help if the need arises

20.  Appreciate child, parent/family for their cooperation

21.    Dispose off, decontaminate and clean used items

22.  Document findings manually or electronically