Counseling a patient with chronic disease - OSCE station

As a PICU guy, I often have to counsel parents of patients with chronic diseases and I have tried to summarise the points, I have learned during my ICU practice. Every counseling session is different and needs to be tailor-made according to the need and understanding of the family, however, the gist remains the same. Let us begin...

Background

Chronic diseases in childhood are increasingly seen with better diagnostic facilities and advances in medical management. Counseling is a very important part of a child’s treatment plan.

Following is the standard approach for counseling parents/carers of a child with chronic disease

1. Setting the stage for communication.

This is important since the entire aim is to pass on effective information, clear doubts, and help the child and family. Anything that interferes with clear communication is noise be it Physical or nonphysical.

1. Introduce yourself, and your role in the team.
2. Choose a calm and undisturbing environment. Show your involvement by avoiding mobile phones, bleeps, and other audiovisual disturbances.
3. Ensure privacy by taking care of the counseling space such as keeping the doors closed.
4. Explain the reason for consultation
5. Use key language as fas as possible

2. Collecting information

Use ICE, ideas, concerns, and expectation for this.

Asking about a patient's ideas, concerns and expectations allows you to gain insight into how a patient currently perceives their situation, what they are worried about, and what they are expecting from the consultation.

I: Extracting patient/carers Ideas (Beliefs)

'Idea' is an opinion of the patient/family/carer about a possible diagnosis, treatment, or prognosis. This establishes the patient’s understanding of the situation and helps modify the counseling.

The following phrases can be used

• Before we talk about this more, I would like to know what exactly do u know about it…...
• It will help me understand your thoughts about it and add more or correct it if necessary
• Please tell me what you think is the reason that has caused the condition?
• Have you heard of .......(diagnosis)...... before?
• Do you have any ideas about what is happening to (name of patient)

C: Knowing the concerns

• What concern Do you have?
• Is there anything in particular that you are concerned about?

Start with...

"We understand your concerns but would you like to elaborate on them, so that we can address them specifically."

Uncovering the patient’s concerns will also help in addressing the underlying anxieties. Sometimes these anxieties/beliefs can be false and removing them can be very relieving.

E: Understanding the expectations

"What are you hoping, we as a team, might be able to do for ... (Name) .?"

Knowing the patient’s expectations can help identify their agenda and establish what they want out of this consultation. This will subsequently help to keep you on points that are vital to the parents/family. (Patient-centric counseling)

3. Giving out information

1. While giving out information it is better to continue a two-way communication. Interactive counseling ensures giving out information that is relevant to the patient and or their families.
2. Acknowledge ‘cues’ and emotions while speaking.
3. Use non-verbal communication where necessary.

Explain the science in words easier to understand. Avoid jargon, technical words, and terminologies.

Following generic points can be used while counseling about any chronic disease.

1. Start with normal anatomy and physology in lay terms
2. State what has deviated from normalcy
3. Explain the Cause (The families sometimes may blame themselves, this needs to be resolved)
4. How the disease can progress, additional symptoms, etc.
5. Red flag signs to watch for
6. Complications in future
7. Treatment options with their Pro's and Con's say for eg. In JIA Early treatment can prevent deformity and reduce or minimize deformities. More about JIA
8. Discuss nutrition if relevant
9. Outcomes

Don’t bombard the patient with too much information, allow time gaps to absorb the information.

4. Ensuring adaptation of the family to the diagnosis.

Acceptance of the diagnosis is the key to adaptation to disease. Affirmation of a diagnosis is therefore important. Ensure that rest of the differentials are rued out and explained to the family.

Remember the process of adaptation takes time. The patient and family may need more than one session.

5. Helping Patients/parents change

The diagnosis will change a lot in the child's surroundings. Give information on desired changes in lifestyle, and habits for both patient and their family.

Offer professional help

1. Offer professional counseling wherever needed.
2. This includes clinical psychologists and disease-specific groups in the area. Counsel regarding how family groups can help them. Knowing others in a similar situation can offer new ways of adaptation.

6. Problem-solving

Communicate the possible problems that may arise due to the chronic course of the disease and guide to troubleshoot them. This may require involving a social worker during the counseling.

Recognize and counsel about the following issues that may arise.

• Behavioral issues: Temper tantrums, aggressive behavior, a refusal for taking medication.
• Altered Mood: Anxiety, fear, sadness, depression, etc
• Parent issues: Blame, guilt, financial issues, stressed environment at home etc.
• Physical issues: Changes in eating, sleep disturbance etc.
• School: Academic problems, change in school performance etc.

School-aged children may be most affected by the inability to attend school and form relationships with peers. Adolescents may struggle with the new dependent life if they require assistance from parents/family members. 

Adress psychosocial issues

Complete counseling must include addressing psychosocial issues. Find out about the family background to understand issues. Find out how this condition affects their lives and what you can do to help them.

" If I may ask you (addressing the parents),

1. What job do you do?
2. Where do you live?
3. Are their problems in current housing "

7. Closing the consultation

Provide resources

1. Give a leaflet about the disease in question (if available or kept on OSCE station)
2. Provide contact details of support group
3. Provide hospital contact number/emergency number as the case may be

Summarise

Summarise the discussion.

Invite questions

Encourage questions if any. "Would you like to know anything else which have not been discussed yet?"

Acknowledge any inability to answer parents/patient's questions and offer an opinion of senior/colleague.

8. Arranging a follow-up

1. Discuss the follow-up plan including follow-up procedures and tests for monitoring that you are going to arrange on follow-up. Give tress on why regular follow-up is required in such illnesses.
2. Inform the need of Involving a multidisciplinary team since most chronic disorders will need a holistic approach.

OSCE station - Counseling a patient with chronic disease

1. Introduces self by name and position held.
2. Confirms patient’s name and date of birth to avoid the wrong identity
3. Explains the reason for consultation
4. Enquires- Ideas, Concerns, and expectations
5. Listens carefully
6. Uses a systematic approach to provide information.
   1. keeps the session interactive
   2. Stays positive but realistic
   3. Acknowledges and responds to patient’s ‘cues’. Pauses and gives sufficient time for patient/family to speak.
   4. Avoid Jargon/complex terminologies and uses simple and small phrases
   5. Stays on the point, Does not deviate from the purpose
7. Check patient/families understanding
8. Communicates about psychosocial issues, offers help/advise
9. Provides patient information leaflet, and or offers contact details of support groups, hospital, ward, etc.
10. Encourages questions.
11. Discusses and Arranges a follow-up plan

References

1. Management of chronic disease by practitioners and patients: are we teaching the wrong things? BMJ. 2000 Feb 26; 320(7234): 572–575. doi: 10.1136/bmj.320.7234.572 (Link)
2. Chronic Disease in Children. Guidelines for parents. Indian Academy of Pediatrics (IAP)(Link)

Author

Ajay Agade | DNB (Pediatrics), FNB (Pediatric Intensive Care), Fellowship in Pediatric pulmonology and LTV

Ajay is a Paediatric Intensivist, currently working in Pediatric Pulmonology & LTV at Great Ormond Street Hospital NHS, London