Diagnosis: a professional’s perspective

In this step, we will hear from Sheila, Tracey, Suresh, Maria Regina, Roxanne, Gornmigar and Francis, healthcare professionals from across the world, who will share their experience and reflect upon the process of diagnosis and discussing the news with parents.

The assessment process is a difficult time for families, and it will often involve a number of visits to different healthcare professionals. Healthcare professionals must approach the process with honesty and empathy. It is important to be open throughout the assessment process, even if all of the facts are not yet known. Withholding information from parents will only exacerbate and prolong their concern, and can break the trust between a parent and clinician.

^{© Holt International}

Having heard from both parents and healthcare professionals, it may be useful for healthcare professionals to follow these general principles of best practice:

Setting/Location

• Inform parents of the diagnosis in a quiet, private location, free from interruption
• If possible, have the room available for parents to reflect on the news after your consultation
• Leave ample time for the appointment. Do not rush parents

People present

• Provide a diagnosis verbally and in person
• The professional giving the diagnosis must be a trained member of staff who can respond to any questions
• If one parent attends the consultation alone, for whatever reason, have sufficient support available, either through extended family or a second professional
• Do not have unnecessary staff present

^{© Holt International}

Communication

• Follow the principles of empathy, respect, honesty and understanding
• Provide a positive, realistic message. Emphasise a child’s potential and describe the support available to the family, but do not give false hope
• Never use dismissive, negative or judgemental language. Avoid negative stereotypes
• If necessary, arrange for a translator to be present
• Use direct, simple and straightforward language to explain the condition
• Relay information back to parents to check their learning and understanding
• Give them ample time to ask these questions
• Listen. Ask parents about their concerns and respect their views and questions

Information and support

• Provide parents with relevant, up to date material on the condition and interventions
• Inform them on next steps, including early intervention programmes, such as physiotherapy, speech and language therapy etc.
• Give information about any support networks in the local area or useful websites
• Always schedule a follow up appointment to continue discussions about ongoing care
• If possible, provide parents with the option of counselling

At times, healthcare professionals will not know the answer to a parent’s question, whether that be about the cause of the condition or the child’s prognosis. This is difficult to admit, as many professionals believe that they should reflect their status as an ‘expert’, in order to help a parent cope with the news. This means that some professionals hazard a guess.

Recognise that it is ok not to know the answer. Guessing is far more damaging than simply admitting that an answer is not known. It is ok to seek more time to review the child’s case or ask colleagues for a further consultation. As they say, “honesty is the best policy”.

Discussion

As ever, we welcome you to discuss your own personal experiences in the comments section below.

• Do you have other examples of good practice to share?
• How could you improve the process of assessment and diagnosis in your area?
• What works when you don’t know the answer to a parent’s question?