Lee, Siew Pien and Alias, Kamila and Wan Mohd Annuar, W Solihatul Hafidzah and Atan, Ashikin and Muhd Helmi, Muhd Alwi and Leong, Steven Fook Seong and Ahmad, Norfadzilah and Mohamad Shariff, Nurasikin and Solikhah, Umi
(2026)
From passive observers to active participants: reframing shared decision making in adolescents with type 1 diabetes.
Journal of Liaquat University of Medical & Health Sciences (JLUMHS)., Special Issue (1).
pp. 11-18.
Abstract
OBJECTIVE: To explore the experiences and perceptions of adolescents regarding their involvement in
SDM for diabetes self-management.
METHODOLOGY: A generic qualitative research design was employed to explore adolescents'
experiences of SDM in T1DM care. The study was conducted at two tertiary hospitals and two
community health clinics in Malaysia. Data collection was carried out between January and June 2025
across multiple clinical settings at a University Hospital and a Public Hospital, and two community
health clinics in Malaysia. Data were collected through non-participant observation and semi-structured
interviews with adolescents, parents, and healthcare professionals, using an interview guide. Purposive
sampling was used to recruit 30 participants: 12 adolescents with T1DM (aged 10–18 years), 14 parents,
and 4 healthcare professionals (paediatricians, pharmacists, and dietitians). Interviews were audio-
recorded, transcribed verbatim, and analyzed thematically.
RESULTS: Three patterns of adolescent engagement were identified: (i) passive roles characterized by
silence and disengagement, (ii) defensive behaviors triggered by emotional pressure or perceived
blame, and (iii) active yet limited participation where adolescents expressed satisfaction with their
current involvement. Despite their presence during clinical encounters, most adolescents deferred
decisions to parents or clinicians. Those who actively participated did so more confidently when
supported through age-appropriate education and positive reinforcement.
CONCLUSION: Adolescents showed three patterns of participation, including passive, defensive, and
active but limited. Most decisions were deferred to parents or clinicians, while active engagement
occurred through supportive communication and age-appropriate education.
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