Illness perception and healthcare-seeking behaviour among people with schizophrenia and their caregivers: A qualitative study

Objective: This study explored the perception of illness and health care-seeking behaviour from the perspective of people with schizophrenia and their caregivers in the Indonesian cultural context. Methods: A qualitative study was employed, using in-depth interviews, in the southern areas of Kalimantan, Indonesia. The qualitative data were analyzed using inductive content analysis. Results: Participants perceived schizophrenia as a result of diverse factors, including drug abuse, depression, stress, spiritual possession, black magic, and neurological disorders. These perceptions were influenced by participants’ beliefs, religions, social norms, local culture, and information provided by clinicians. The patterns of healthcare-seeking behavior were similar in the first psychosis episode and during relapse. The severity of symptoms, whether classified as mild or severe, affected their healthcare-seeking behaviour. When symptoms were considered mild, they chose self-medication or alternative treatments. However, if symptoms were severe or life-threatening, patients were directed to seek assistance from healthcare centers. During relapses, the recurrent patterns of health care-seeking behaviour persisted, with the caregivers’ capacity to recognize symptoms significantly influencing this continuity. Conclusion: participants’ unfamiliarity with the term “schizophrenia” is indicative of a knowledge gap. Moreover, to manage the symptoms and provide quality care, an intervention is necessary to improve the patient and caregiver’s knowledge of schizophrenia.