Impact of Disease Disclosure in Paediatric Patients With Human Immunodeficiency Virus (HIV) in Hospital Tuanku Fauziah, Malaysia: A Qualitative Study

Karniza Khalid, Haslizawati Hashim, Mazura Ishak, Maznah Ibrahim


Progression to AIDS is more rapid in HIV-infected children.

Objective: Our study aimed to investigate the effect of HIV status disclosure in children in terms of their perception of the illness, knowledge on their disease and medications and the overall impact on their quality of life.

Methods: A qualitative study was conducted from 1st June 2017 till 8th September 2017 involving face-to-face interviews with HIV-positive children receiving combination anti-retroviral therapy (cART) under paediatric HIV clinic follow-up, Hospital Tuanku Fauziah, Kangar, Perlis. Transcribed interview dialogues were subsequently coded for analysis.

Results: Data were collected from 6 out of 8 HIV-positive children on cART in Hospital Tuanku Fauziah, Perlis. Participants’ mean age was 12.2 years (standard deviation [SD] 2.11); 3 with disease disclosure. Disease-disclosed participants with ironically poor knowledge on their disease emerged as the key theme in the study. Disease-disclosed participants were also noted to be more withdrawn with very few friends, if any. Disease disclosure status did not affect the patients’ knowledge and compliance to medication.

Conclusion: Assessment of patients’ understanding after disease-disclosure session is crucial to encourage therapy adherence and prevention of future transmission. Re-appraisal of the healthcare policy with regards to holistic management of children living with HIV is warranted to attain positive social and developmental goal throughout their lives.

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HIV Infections; Qualitative Research; Paediatrics; Patient Compliance

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