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Healthcare professionals face ethical challenges in managing care for neurodevelopmental disorders: a qualitative
Mustafa Saleh1,2, Hani Chanbour3, Lara Saoudi3
1Faculty of Medical Sciences, Lebanese University, Beirut, Lebanon salehjmustafa@gmail.com.
Insights
Healthcare professionals in Lebanon face ethical challenges managing neurodevelopmental disorders (NDDs) in children. Balancing patient autonomy with surrogate decision-making and communication complexities are key issues requiring tailored approaches.
Area of Science:
- Medical Ethics
- Neurodevelopmental Disorders
- Pediatric Healthcare
Background:
- Managing children and adolescents with neurodevelopmental disorders (NDDs) presents unique ethical challenges for healthcare professionals (HCPs).
- Ethical dilemmas often involve navigating patient autonomy, surrogate decision-making, and communication barriers, particularly with severe cognitive impairments.
Purpose of the Study:
- To explore the ethical challenges encountered by HCPs in Lebanon when managing pediatric patients with NDDs.
- To understand how HCPs address ethical dilemmas concerning patient autonomy, surrogate decision-making, and communication in the context of cognitive impairments.
Main Methods:
- A qualitative, cross-sectional study design was employed.
- Semi-structured interviews were conducted with 16 HCPs, including pediatric neurologists and psychiatrists.
- Thematic analysis was used to identify and analyze key ethical challenges in clinical practice.
Main Results:
- Key ethical challenges identified include balancing patient autonomy with surrogate decision-making, tailoring care to cognitive abilities, and managing complex communication with families.
- Participants stressed the importance of case-by-case assessment of decision-making capacity.
- A need for specialized, patient-centered approaches that respect autonomy while acknowledging cognitive limitations was highlighted.
Conclusions:
- This study offers critical insights into the ethical considerations for HCPs managing pediatric NDDs in Lebanon.
- Further research is recommended to develop targeted training programs for HCPs to address these ethical challenges.
- Promoting patient-centered decision-making in pediatric NDD care is essential.
Objectives:
This study aimed to explore the ethical challenges faced by healthcare professionals (HCPs) in managing children and adolescents with neurodevelopmental disorders (NDDs) in Lebanon. The primary research question addressed how HCPs navigate ethical dilemmas related to patient autonomy, surrogate decision-making and communication in the context of severe cognitive impairments.
Design:
Qualitative, cross-sectional study using semi-structured interviews. Thematic analysis was applied to identify key ethical challenges in clinical practice.
Setting:
Participants recruited from a range of healthcare specialties, including paediatric neurology, general paediatrics and psychiatry, and registered with the Lebanese Order of Physicians.
Participants:
Sixteen HCPs, including paediatric neurologists and psychiatrists, participated in the study. Participants were selected based on their experience in treating children and adolescents with NDDs. There were no exclusion criteria based on gender, ethnicity or years of experience.
Interventions:
No formal interventions were applied. Participants were interviewed about their experiences and ethical challenges in managing patients with NDD.
Primary And Secondary Outcome Measures:
The primary outcome was the identification of ethical dilemmas faced by HCPs in clinical decision-making with patients with NDD. Secondary outcomes included insights into the strategies employed by HCPs to balance patient autonomy with surrogate decision-making and the communication challenges they face with patients' families.
Results:
Thematic analysis revealed several key ethical challenges, including (1) balancing patient autonomy with the need for surrogate decision-making, (2) tailoring healthcare to individual cognitive abilities and (3) navigating the complexities of communication with patients and their families. Participants emphasised the importance of assessing decision-making capacity on a case-by-case basis. The study also highlighted the need for specialised, patient-centred approaches that respect autonomy while considering the practical limitations imposed by severe cognitive impairments.
Conclusions:
This study provides critical insights into the ethical considerations faced by HCPs in managing children and adolescents with NDDs. Further research is needed to develop training programs for HCPs that address these ethical challenges and promote patient-centred decision-making.
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