Abstract：
BACKGROUND: The onset of psychosis brings unfamiliar experiences that can be disturbing for patients and their caregivers. Few studies from India (only one from North India) have examined these experiences from the perspective of the patient and caregiver. We explored experiences of first episode psychosis (FEP) patients and their caregivers within a North Indian context.
METHODS: Semi-structured interviews were conducted in 2019 with ten FEP patients and their caregivers (total n=20) receiving out-patient care in a tertiary care centre. Topic guides focused on concerns/complaints, symptoms, help-seeking, and barriers and facilitators to treatment. Interviews were audio recorded, transcribed, and analysed using qualitative content analysis.
RESULTS: Main categories of responses from patients and caregivers included: initial complaints for seeking help, initial emotional response, barriers to seeking treatment, perceived dysfunction and improvement, experienced stigma, understanding about illness, early follow-up, preventive measures and awareness programs. Caregivers undergo myriad of emotional reactions including anger, anxiety, guilt, and confusion. Symptoms other than psychotic symptoms were the primary complaint upon seeking help, and there was lack of understanding about the psychosocial model of care (role of medications acknowledged with little awareness regarding psychosocial interventions in recovery). Persisting occupational dysfunction despite perceived symptomatic improvement was described by both patients and caregivers.
CONCLUSIONS: North Indian patients with FEP lack awareness of symptoms. Therefore, onus for seeking help often falls on their caregivers. Psychoeducation from first contact with services and increasing awareness about psychotic illness within the community might help address lack of awareness about symptoms, mental health services, early signs of relapse, and importance of psychosocial interventions in achieving functional recovery.
METHODS: Semi-structured interviews were conducted in 2019 with ten FEP patients and their caregivers (total n=20) receiving out-patient care in a tertiary care centre. Topic guides focused on concerns/complaints, symptoms, help-seeking, and barriers and facilitators to treatment. Interviews were audio recorded, transcribed, and analysed using qualitative content analysis.
RESULTS: Main categories of responses from patients and caregivers included: initial complaints for seeking help, initial emotional response, barriers to seeking treatment, perceived dysfunction and improvement, experienced stigma, understanding about illness, early follow-up, preventive measures and awareness programs. Caregivers undergo myriad of emotional reactions including anger, anxiety, guilt, and confusion. Symptoms other than psychotic symptoms were the primary complaint upon seeking help, and there was lack of understanding about the psychosocial model of care (role of medications acknowledged with little awareness regarding psychosocial interventions in recovery). Persisting occupational dysfunction despite perceived symptomatic improvement was described by both patients and caregivers.
CONCLUSIONS: North Indian patients with FEP lack awareness of symptoms. Therefore, onus for seeking help often falls on their caregivers. Psychoeducation from first contact with services and increasing awareness about psychotic illness within the community might help address lack of awareness about symptoms, mental health services, early signs of relapse, and importance of psychosocial interventions in achieving functional recovery.
摘要：
背景：精神病的发作带来了不熟悉的经历，可能会困扰患者及其护理人员。很少有来自印度的研究（只有来自印度北部的研究）从患者和护理人员的角度研究了这些经历。我们探索了北印度地区首发精神病（FEP）患者及其护理人员的经验。
方法：2019年对10名FEP患者及其照顾者（总共n=20）在三级护理中心接受门诊护理进行了半结构化访谈。主题指南侧重于关注/投诉，症状,寻求帮助,以及治疗的障碍和促进者。采访是录音，转录，并使用定性内容分析进行分析。
结果：患者和护理人员的主要反应类别包括：寻求帮助的初始投诉，最初的情绪反应，寻求治疗的障碍，感知功能障碍和改善，经历过的耻辱，了解疾病，早期随访，预防措施和宣传计划。照顾者经历了无数的情绪反应，包括愤怒，焦虑,内疚，内疚和困惑。除精神病症状外的其他症状是寻求帮助时的主要主诉，并且缺乏对心理社会护理模式的了解(药物的作用被公认为对康复中的心理社会干预的认识很少).患者和护理人员都描述了尽管感觉到症状改善但仍存在持续的职业功能障碍。
结论：北印度FEP患者缺乏对症状的认识。因此,寻求帮助的责任往往落在他们的照顾者身上。从首次接触服务和提高对社区内精神病的认识开始的心理教育可能有助于解决对症状缺乏认识的问题。心理健康服务,复发的早期迹象，以及心理社会干预在实现功能恢复中的重要性。
方法：2019年对10名FEP患者及其照顾者（总共n=20）在三级护理中心接受门诊护理进行了半结构化访谈。主题指南侧重于关注/投诉，症状,寻求帮助,以及治疗的障碍和促进者。采访是录音，转录，并使用定性内容分析进行分析。
结果：患者和护理人员的主要反应类别包括：寻求帮助的初始投诉，最初的情绪反应，寻求治疗的障碍，感知功能障碍和改善，经历过的耻辱，了解疾病，早期随访，预防措施和宣传计划。照顾者经历了无数的情绪反应，包括愤怒，焦虑,内疚，内疚和困惑。除精神病症状外的其他症状是寻求帮助时的主要主诉，并且缺乏对心理社会护理模式的了解(药物的作用被公认为对康复中的心理社会干预的认识很少).患者和护理人员都描述了尽管感觉到症状改善但仍存在持续的职业功能障碍。
结论：北印度FEP患者缺乏对症状的认识。因此,寻求帮助的责任往往落在他们的照顾者身上。从首次接触服务和提高对社区内精神病的认识开始的心理教育可能有助于解决对症状缺乏认识的问题。心理健康服务,复发的早期迹象，以及心理社会干预在实现功能恢复中的重要性。
