Representative quotations illustrating ethical and practical challenges in the care of patients with neurodevelopmental disorder, in Lebanese physicians
| Theme | Reference | Quotations |
| I. Struggles with medical ethics principles and their interrelation | (a) | Physician 2: “Autonomy is when we tell the patient everything regarding the treatments and its successes and side effects, what other options for treatment are present and what suits the patient” |
| (b) | Physician 11: “Justice is that each patient should have his rights, despite the region, religion and socioeconomic status” | |
| II. Conflicting views on ethical care in Lebanon | (a) | Physician 16: “These patients have special situations; they are different and not retarded. We shouldn’t treat them the same way, even the location and type of cabinet shouldn’t be the same” |
| (b) | Physician 17: “The doctor’s job here is talking them into accepting it and how to live with it without making the child feel as he/she are different, not normal” | |
| III. Exploring the spectrum of decision-making | (a) | Physician 13: “It depends on the degree of severity. Some patients have ADHD but are very good and cognizant” |
| (b) | Physician 10: “but there are cases that differ from each other, the degree of developmental disorder differs, they are different from a patient to another and I personally think that the excellence of a doctor is showed by his capability to know the degree of developmental delay this child has” | |
| (c) | Physician 2: “Their parents are the ones to take the decision. Such patients don’t have the ability to participate in taking a decision” | |
| (d) | Physician 11: “Usually we communicate and talk to the parents and not the children. Therefore, children usually don’t know what is happening. Children are not even in direct relation with everything” | |
| (e) | Physician 11: “It’s not possible to ask a child of 11-year-old to ask his opinion. The final decision is always to the parents” | |
| IV. Tailoring health information to patients | (a) | Physician 13: “The patient should understand that he/she should take the medication in order to live normally and carry out with all activities and not get seizures, but the doctor wouldn’t straight up say “this medication is for brain electricity” because the patient wouldn’t understand” |
| (b) | Physician 10: “If the patient doesn’t have the capacity to communicate and comprehend, I would consider these efforts to be a loss of energy from my part” | |
| (c) | Physician 12: “The doctor should explain to the patient. As a neuropediatric, I see the patient for around 30 to 45 min per session, so definitely I will have to explain to the patient as would any other neuropediatrician” | |
| V. Specialised approach to consultation in Lebanon | (a) | Physician 1: “First of all, it is important to set an appointment beforehand, especially for the patients with ASD. The doctor starts work at 10, but for patients with ASD, he will set their appointment at nine because such patients won’t be comfortable with waiting outside” |
| (b) | Physician 1: “In general, once the patient enters the clinic, his/her actions should be watched (how they speak and move, if there are repetitive behaviors, eye contact…)” | |
| (c) | Physician 11: “Always you have to go back to the story from the beginning. The pregnancy, birth conditions, psychomotor tests every month. Them we can go for the family history, if there’s any consanguinity…” | |
| (d) | Physician 16: “I would call out the steps (what tests I’m going to do or what treatment is going to be used) to the parents in front of the patients so the patient would know what is going to be done to her” | |
| (e) | Physician 6: “However, I would approach the child in a gentler way by doing less aggressive exams in order not to disturb him/her” | |
| VI. Exploring the extent of patient autonomy offered | (a) | Physician 12: “If the child is able to communicate, then of course she would take the patient’s opinion” |
| (b) | Physician 10: “If he is able to communicate of course but if he’s not able to communicate, I wouldn’t waste my time and talk to him” | |
| (c) | Physician 8: “We should be using the pre-assessments, that are unfortunately absent in Lebanon, to guide our practice” | |
| VII. Promoting effective active listening and communication | (a) | Physician 13: “We communicate with these patients in many times, because sometimes their answers is more reliable than their parents” |
| (b) | Physician 5: “Maybe it would be through a tap on the back or a smile, as much as a doctor can to properly engage with the patient during the patient’s visiting time” | |
| (c) | Physician 9: “I would tell the patient, about their conditions and treatments and give them the needed insight in a simple way, without getting into details” | |
| VIII. Patient–provider communication and relationship challenges | (a) | Physician 10: “I don’t know how much the time; the mental capacity and the financial abilities do doctors have right now that allow him to do the proper work like they used to before” |
*Quotations are sometimes slightly modified in order to enhance readability