Patient and Caregiver Experience with Long-Term Home Non-Invasive Ventilation in Kazakhstan: A Qualitative Study

Background For patients with chronic respiratory failure, the transition to home mechanical ventilation is a life-altering event. While the physiological benefits of Non-Invasive Ventilation (NIV) are well established, the human experience of adapting to this therapy, particularly in Central Asia's unique geographic and healthcare context, remains largely unexplored. This study aims to give a voice to patients and caregivers in Kazakhstan, exploring their lived experiences to identify the barriers and facilitators that shape their journey with long-term home NIV. Methods We conducted a phenomenological qualitative study using semi-structured telephone interviews to reach participants across the vast geography of Kazakhstan. The study included 21 participants (patients with chronic respiratory failure and their caregivers). To complement the qualitative narratives, we used the EQ-5D-3L questionnaire to quantitatively assess health-related quality of life. Thematic analysis was performed using NVivo software, adhering to the COREQ guidelines. Results The patient experience was synthesized into five interconnected themes: (1) The Patient’s Journey, often characterized by confusion and a critical lack of information at the regional primary care level; (2) The Adaptation Curve, describing the emotional transition from the initial fear of the "closed" mask to a sense of security; (3) Reclaiming Life, highlighting significant clinical improvement and social reintegration; (4) The Digital Lifeline, revealing a sharp contrast between the lack of local expertise and the critical safety net provided by specialized remote support; and (5) Quantitative Outcomes, where high self-rated health scores (mean VAS 71.2) corroborated the qualitative reports of well-being. Conclusions Long-term home NIV does more than improve physiological parameters; it restores a sense of normalcy and quality of life for patients in Kazakhstan. However, patients face a systemic "information vacuum" in regional areas. Currently, telemedicine acts as a vital bridge across the country's vast distances. To ensure safety and equity, this informal digital support must be formalized, and regional primary care providers must be empowered with NIV competencies.