Component Task: Counselling of Parents Whose Child Has a Congenital Anomaly

This is the art and science of assisting a family of a child with birth defect to make an informed decision in the care of that child.

Aims

·         Provide psychosocial support to the family

·         Assist family in adjusting to the situation

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

·         Discuss available treatment options

·         Prevent complications

·         Provide options for rehabilitation

·         Prevent stigmatization and social isolation

Requirements

·         Pen and notepad

·         Folder/Records (Manual/electronic)

·         Examination gloves

·         Examination couch

·         Comfortable environment

·         Screen (if necessary)

Steps

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

2.      Provide privacy

3.      Explain the need for counseling

4.      Obtain inform consent form

5.      Perform five moments of hand hygiene

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

7.       Obtain family history and enquire about consanguinity

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

9.      Perform a physical assessment of the child and record

10.    Confirm diagnosis and relevant investigations done

11.      Remain non judgmental

12.    Clear up any misconceptions and allay feelings of guilt

13.    Encourage parent/family to allow child to socialize e.g. schooling, playing with friends etc.

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

15.    Encourage interaction with other known family on such conditions

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

17.    Explain available treatment options to child, parent/family if any

18.    Inform child, parent/family about availability of rehabilitation to improve quality of life

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

20.  Advice/give information on support groups available

21.    Encourage them to accept the malformed child

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

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

24.  Appreciate child, parent/family for their cooperation

25.  Dispose off, decontaminate and clean used items

26.  Document findings manually or electronically