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

Patient and Caregiver Experience with Long-Term Home Non-Invasive Ventilation in Kazakhstan: A Qualitative Study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Patient and Caregiver Experience with Long-Term Home Non-Invasive Ventilation in Kazakhstan: A Qualitative Study Aurini Serikova, Irina Mukatova, Oxana Tsigengagel This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8299150/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 6 You are reading this latest preprint version Abstract 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. Long-term non-invasive ventilation Chronic respiratory failure Patient experience Quality of life Telemedicine Kazakhstan Figures Figure 1 Background The global burden of chronic respiratory failure (CRF) is rising, driven by conditions such as Chronic Obstructive Pulmonary Disease (COPD) and obesity hypoventilation syndrome. For these patients, long-term home non-invasive ventilation (NIV) has become the gold standard of care, offering a lifeline that reduces hospitalizations and extends survival [ 1 , 2 ]. However, the success of NIV is not determined solely by the machine, but by the person using it. Adapting to sleeping with a mask and a pressurized machine is a complex physical and psychological challenge. Patients often grapple with discomfort, claustrophobia, and the fear of dependence on technology [ 3 ]. European studies have shown that a patient’s "buy-in" and the quality of their relationship with healthcare providers are the strongest predictors of adherence [ 4 , 5 ]. In Kazakhstan, this human journey takes place against a unique backdrop. The country’s vast territory creates a stark contrast between high-tech specialized centers in major cities and the primary care available in remote regions. As recent local research emphasizes, there is currently no formalized, integrated service model for home care respiratory support [ 6 ]. Patients often find themselves navigating a disconnect: initiated on complex therapy in a national center, they return home to regions where local doctors may be unfamiliar with the device. Understanding the lived experience of these patients is crucial. It allows us to move beyond clinical metrics and understand the human reality of managing respiratory failure at home. This study aimed to explore the experiences, fears, and triumphs of patients receiving long-term home NIV in Kazakhstan, to help build a more patient-centered healthcare model. Methods Study Design We employed a phenomenological qualitative design to capture the essence of the participants' experiences. Data collection took place between September and November 2025. The study is reported in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Participants We recruited 21 participants (patients and close caregivers) dealing with CRF requiring home NIV. To reflect the true diversity of the patient experience, we used purposive sampling to include individuals from major metropolises (Astana, Almaty) as well as remote industrial and rural towns (Aralsk, Ekibastuz, Kokshetau, Aktau, Atyrau). Inclusion criteria were: age ≥ 18 years, established on home NIV for at least one month, and the ability to articulate their experience (or have a caregiver do so). Data Collection To accommodate the participants' health conditions and wide geographic dispersion, semi-structured interviews were conducted via telephone. This approach allowed patients to share their experiences from the safety and comfort of their own home environment. The interviews were led by a female pulmonologist trained in qualitative listening. Crucially, she was not involved in the patients' direct clinical care, which helped establish a rapport based on trust and encouraged participants to speak openly about their challenges without fear of judgement. The semi-structured interview guide was developed specifically for this study based on existing literature [ 7 ] to suit the local context; the full English version of the guide is provided as Supplementary File 1 . The dialogue explored the lived experience of the patient journey from the first symptoms to adapting to life with the device. Additionally, the EQ-5D-3L questionnaire was administered to capture a broader perspective on their well-being. Data Analysis Interviews were audio-recorded and transcribed verbatim. Thematic analysis was performed using NVivo 12 software (QSR International). An inductive approach was used to identify emerging themes. Two researchers independently coded the transcripts and met to reach a consensus on the final themes. Descriptive statistics were used to analyze the EQ-5D data. Results Participant Characteristics The study included a diverse group of 21 participants with a median age of 47 years (range 19–75). The majority (57.1%) were male. Most patients (61.9%) were managing severe respiratory failure requiring a combination of NIV and long-term oxygen therapy (LTOT). Detailed demographics are presented in Table 1 . Table 1 Sociodemographic and clinical characteristics of the study participants (n = 21) Characteristic Categories n (%) or Median (Range) Age, years 47 (19–75) Gender Male 12 (57.1%) Female 9 (42.9%) Region of Residence Astana (Capital) 7 (33.3%) Akmola Region (Kokshetau) 3 (14.3%) Pavlodar Region (Ekibastuz, Pavlodar) 2 (9.5%) Atyrau Region 2 (9.5%) Mangystau Region (Aktau) 2 (9.5%) Kostanay Region 2 (9.5%) Kyzylorda Region (Aralsk) 1 (4.8%) East Kazakhstan Region 1 (4.8%) Karaganda Region 1 (4.8%) Clinical Diagnosis COPD 11 (52.4%) Interstitial Lung Diseases 4 (19.0%) Bronchiectasis 4 (19.0%) Cystic Fibrosis 1 (4.8%) Other (e.g., Kyphoscoliosis) 1 (4.8%) Type of Home Respiratory Support NIV + LTOT 13 (61.9%) NIV only 8 (38.1%) Note: NIV: Non-Invasive Ventilation; LTOT: Long-term Oxygen Therapy; COPD: Chronic Obstructive Pulmonary Disease. The analysis of the interviews revealed five profound themes describing the patient journey. These are summarized alongside the quantitative results in Table 2 . Table 2 Summary of qualitative themes and quantitative health-related quality of life (EQ-5D) Results Categories / Dimensions n (%) or Frequency* Qualitative Themes (Total References) Cat 1: Patient’s Journey to NIV 58 1.1. Information deficit in regions / Referral to the Center 35 1.2. Role of family in decision & purchase 23 Cat 2: Adaptation and Usage Experience 64 2.1. Fears (death, mask, dependence) & doubts 21 2.2. Adaptation process (duration) 19 2.3. Routine use and independence 24 Cat 3: Impact on Quality of Life 82 3.1. Clinical improvements (sleep, dyspnea, energy) 48 3.2. Social activity (work, travel, household) 34 Cat 4: Interaction with Healthcare System 45 4.1. Specialized support (telemedicine/WhatsApp) 28 4.2. Barriers at the regional PHC level (lack of knowledge) 17 Quantitative Results: EQ-5D-3L (n = 21) Patients n (%) Mobility * Level 1 (No problems) 13 (61.9%) * Level 2 (Some problems) 6 (28.6%) * Level 3 (Confined to bed) 2 (9.5%) Self-Care * Level 1 (No problems) 16 (76.2%) * Level 2 (Some problems) 4 (19.0%) * Level 3 (Unable to wash/dress) 1 (4.8%) Usual Activities * Level 1 (No problems) 10 (47.6%) * Level 2 (Some problems) 11 (52.4%) * Level 3 (Unable to perform) 0 (0%) Pain / Discomfort * Level 1 (No pain) 13 (61.9%) * Level 2 (Moderate pain) 7 (33.3%) * Level 3 (Extreme pain) 1 (4.8%) Anxiety / Depression * Level 1 (No anxiety) 15 (71.4%) * Level 2 (Moderate anxiety) 5 (23.8%) * Level 3 (Extreme anxiety) 1 (4.8%) EQ-VAS Score (0–100) Mean ± SD * Self-rated health state 71.2 ± 21.2 *Note: For qualitative themes, 'n' represents the number of coded references in the transcripts. Category 1: The Patient’s Journey - Navigating the Unknown For many, the journey began with confusion. A striking finding was the "information vacuum" in regional areas. 17 out of 21 patients discovered NIV only after travelling to the National Scientific Center in Astana or encountering research doctors. In regions like Aktobe and Aralsk, patients reported that their local physicians were often unaware that such therapy existed for home use. “In our polyclinic, they have heard about breathing apparatuses, but they don't know how to turn them on or adjust them. We found out ourselves.” (Patient 13) “In Aralsk, I tell you, this treatment does not exist. You have to go to Astana.” (Patient 20) Category 2: The Adaptation Curve - From Fear to Security The initial encounter with the machine was often fraught with anxiety. Patients viewed the device with a mix of hope and dread - fearing the "closed system" of the mask or worrying they might stop breathing if they fell asleep. “I was afraid I would have to sleep in this mask for the rest of my life. I thought I might suffocate.” (Patient 9) However, contrary to some literature suggesting prolonged struggles, most participants (n = 14) reported a surprisingly rapid adaptation (1–3 days). This was frequently attributed to the immediate symptom relief and the reassurance provided by remote support. “From the first day, I put on the mask... No one helped me. I adapted immediately.” (Patient 14) Category 3: Reclaiming Life The impact of therapy was profound. Patients described not just medical improvement, but a return to personhood. The regression of breathlessness and the ability to sleep supine allowed for social reintegration. “I became a human again. A full human being. You just didn't see how I was before.” (Patient 12) “I walk to work calmly, I don't get tired like before... I used to have to sit down, now I just walk.” (Patient 14) Category 4: The Digital Lifeline The contrast between local and specialized care was a defining theme. While patients felt unsupported by local clinics, they highly valued the "digital proximity" of the research team. WhatsApp and video calls were not just convenient; they were a lifeline that made the therapy sustainable in remote locations. “In my polyclinic, they don't even ask, they don't know about it... [But] we are in touch with you, even though so much time has passed, you always answer.” (Patient 20) Category 5: Quantitative Validation (EQ-5D) The qualitative sense of "returning to life" was supported by the numbers. The mean self-rated health score (EQ-VAS) was 71.2 ± 21.2, a high score for this patient population. While physical limitations persisted (with 52.4% reporting problems in "Usual Activities"), the low rates of reported anxiety and depression (71.4% with no problems) suggest that effective respiratory support plays a crucial role in stabilizing mental well-being. Discussion To our knowledge, this is the first qualitative study exploring the patient experience with home NIV in Kazakhstan. Our findings paint a picture of resilience: patients traversing a fragmented system to find a therapy that ultimately restores their quality of life. Adaptation and the "Learning Curve" Our participants described a distinct emotional trajectory: from initial fear to a sense of security. This mirrors the findings of Hussain et al. (2025), who identified "becoming confident" as a pivotal phase in long-term adherence [ 8 ]. Interestingly, our patients reported a notably rapid adaptation. We hypothesize this is due to the intense "digital proximity" of the specialized team: immediate answers via WhatsApp reduced the anxiety often associated with technical alarms or mask discomfort, a barrier frequently cited in European qualitative literature [ 9 , 10 ]. Impact on Sleep and Well-being A major motivator for adherence was the tangible improvement in sleep. Patients reported waking up "fresh" and free of headaches. This qualitative finding aligns with recent objective data indicating that optimizing NIV settings significantly enhances sleep architecture and reduces sleep fragmentation [ 11 ]. The restoration of restorative sleep appears to be a key driver for the high self-rated health scores observed in our study. Healthcare Interaction: The Digital Safety Net The most critical finding for the healthcare system is the dichotomy between the lack of local expertise and the effectiveness of remote specialized support. While gaps in access to respiratory care are a global challenge [ 12 ], the situation in Kazakhstan is exacerbated by vast distances. Patients explicitly stated that local doctors "do not know the device." This lack of competence regarding complex medical equipment poses a potential risk to patient safety. As highlighted in previous analyses of healthcare offences in Kazakhstan, ensuring professional competence is critical for delivering safe care and reducing medical errors [ 13 ]. Currently, telemedicine acts as the primary mode of care for these patients. This supports the conclusion of Serikova et al. that establishing a coordinated home care service is a necessity for the country [ 6 ]. Our results demonstrate that until such a service is fully implemented, telemedicine remains the critical "safety net," bridging the geographic divide. Limitations The study is limited by its sample size (n = 21) and the fact that some interviews involved caregivers, which might influence the narrative. However, the diverse geographic representation strengthens the validity of the findings regarding regional disparities. Conclusions This study demonstrates that long-term home NIV is successfully implemented in Kazakhstan and substantially improves patients' quality of life. However, the system relies heavily on the initiative of patients and the remote support of a few specialists. The primary barrier is the "knowledge gap" at the regional primary care level. Abbreviations NIV Non-Invasive Ventilation CRF Chronic Respiratory Failure COPD Chronic Obstructive Pulmonary Disease HRQoL Health-Related Quality of Life LTOT Long-Term Oxygen Therapy PHC Primary Healthcare COREQ Consolidated Criteria for Reporting Qualitative Research Declarations Acknowledgements We would like to thank all the patients and their caregivers who participated in this study for their trust, time, and valuable insights. Authors' contributions AS, IM, and OT designed the study, contributed to the data analysis, and provided critical input on the intellectual content of the work. AS performed the data collection and drafted the original manuscript. All authors reviewed and approved the final manuscript. Funding The authors declare that no funds, grants, or other support were received during the preparation of this manuscript. Data availability The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request. Ethics approval and consent to participate The study was conducted in accordance with the Declaration of Helsinki. Ethical approval was granted by the Local Ethics Committee of Astana Medical University (Protocol No. 6, dated 10 April 2025). All participation was voluntary. Informed consent was obtained from all individual participants included in the study. Due to the remote nature of data collection for some participants, consent was obtained both orally (audio-recorded) and in writing. Consent for publication Not applicable. Competing interests The authors declare no competing interests. Author details 1 Department of internal illnesses №3, Astana Medical University, Astana, Kazakhstan 2 Department of Epidemiology and Biostatistics, Astana Medical University, Astana, Kazakhstan. References Ergan B, Oczkowski S, Rochwerg B, et al. European Respiratory Society guidelines on long-term home non-invasive ventilation for management of COPD. Eur Respir J. 2019;54(3):1901003. D'Cruz RF, Kaltsakas G, Suh ES, Hart N. Quality of life in patients with chronic respiratory failure on home mechanical ventilation. Eur Respir Rev. 2023;32(168):220237. McCormick JL, Clark TA, Shea CM, et al. Exploring the Patient Experience with Noninvasive Ventilation. Chronic Obstr Pulm Dis. 2022;9(1):80-94. Masefield S, Vitacca M, Dreher M, et al. Attitudes and preferences of home mechanical ventilation users from four European countries: an ERS/ELF survey. ERJ Open Res. 2017;3(2):00015-2017. Baigenzhin A, Pak A, Zaripova L, Zarkumova Z, Chuvakova E. 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Supplementary Files COREQ.docx SupplementaryFile1InterviewGuide.pdf Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 02 Apr, 2026 Reviewers invited by journal 06 Jan, 2026 Editor assigned by journal 05 Jan, 2026 Editor invited by journal 12 Dec, 2025 Submission checks completed at journal 10 Dec, 2025 First submitted to journal 10 Dec, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. 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05:51:04","extension":"jpeg","order_by":7,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":305114,"visible":true,"origin":"","legend":"","description":"","filename":"floatimage1.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-8299150/v1/d7e5c855f2d253e10bc52d80.jpeg"},{"id":100360890,"identity":"beb2eca8-2443-4a44-8129-99c14da9f934","added_by":"auto","created_at":"2026-01-16 07:44:06","extension":"png","order_by":8,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":156069,"visible":true,"origin":"","legend":"","description":"","filename":"OnlineFigure1NIVExperienceKazakhstan1.png","url":"https://assets-eu.researchsquare.com/files/rs-8299150/v1/81894eee35d6ae1f2d7387f8.png"},{"id":100360870,"identity":"81af721b-c867-405d-8b79-3026ebf18cf8","added_by":"auto","created_at":"2026-01-16 07:44:04","extension":"png","order_by":9,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":66735,"visible":true,"origin":"","legend":"","description":"","filename":"Onlinefloatimage1.png","url":"https://assets-eu.researchsquare.com/files/rs-8299150/v1/cdd3e8ffc55c22a498f5af12.png"},{"id":100007780,"identity":"4b81f149-51ee-410f-98de-fb871b7df889","added_by":"auto","created_at":"2026-01-12 05:51:04","extension":"xml","order_by":10,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":77871,"visible":true,"origin":"","legend":"","description":"","filename":"f86608faf4fe41cf86622234f345aa851structuring.xml","url":"https://assets-eu.researchsquare.com/files/rs-8299150/v1/df65984f261442d1dffb7a1a.xml"},{"id":100007783,"identity":"f23af184-76e2-4f88-86f4-0d3c2fdcb2a4","added_by":"auto","created_at":"2026-01-12 05:51:04","extension":"html","order_by":11,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":89676,"visible":true,"origin":"","legend":"","description":"","filename":"earlyproof.html","url":"https://assets-eu.researchsquare.com/files/rs-8299150/v1/89d2ea43a0288e10f8fb2dd3.html"},{"id":100007777,"identity":"f9dd3a11-ffca-454d-bf9f-6deb607f8bb4","added_by":"auto","created_at":"2026-01-12 05:51:04","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":491221,"visible":true,"origin":"","legend":"\u003cp\u003eSchematic representation of the patient journey and experience with home NIV in Kazakhstan. The diagram illustrates the interplay between the five identified categories. The central linear flow (Categories 1–3) depicts the patient's progression from an initial information vacuum to successful adaptation and improved quality of life. The bottom section (Category 4) highlights the unique healthcare context: the red arrow indicates barriers at the regional primary care level, while the green arrow demonstrates the enabling role of specialized telemedicine support. The top section (Category 5) integrates quantitative EQ-5D findings, validating the perceived improvements.\u003c/p\u003e","description":"","filename":"Figure1NIVExperienceKazakhstan1.png","url":"https://assets-eu.researchsquare.com/files/rs-8299150/v1/144e9d2a02af545a90630f74.png"},{"id":100381327,"identity":"1e1b7612-ae9c-4d6b-afc9-89b5c841fbe6","added_by":"auto","created_at":"2026-01-16 10:38:12","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1319187,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8299150/v1/2d2f0e4a-2479-403a-a68b-765bfce21985.pdf"},{"id":100361893,"identity":"d905ec65-d014-4540-9b04-72e3d9e30f36","added_by":"auto","created_at":"2026-01-16 07:45:54","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":20410,"visible":true,"origin":"","legend":"","description":"","filename":"COREQ.docx","url":"https://assets-eu.researchsquare.com/files/rs-8299150/v1/6070ed1668474f6bf6c853d7.docx"},{"id":100360938,"identity":"c2d44656-80df-4fef-a657-23fa1bddd7c5","added_by":"auto","created_at":"2026-01-16 07:44:12","extension":"pdf","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":135373,"visible":true,"origin":"","legend":"","description":"","filename":"SupplementaryFile1InterviewGuide.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8299150/v1/8269db9c215d172e7c3a8a88.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Patient and Caregiver Experience with Long-Term Home Non-Invasive Ventilation in Kazakhstan: A Qualitative Study","fulltext":[{"header":"Background","content":"\u003cp\u003eThe global burden of chronic respiratory failure (CRF) is rising, driven by conditions such as Chronic Obstructive Pulmonary Disease (COPD) and obesity hypoventilation syndrome. For these patients, long-term home non-invasive ventilation (NIV) has become the gold standard of care, offering a lifeline that reduces hospitalizations and extends survival [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eHowever, the success of NIV is not determined solely by the machine, but by the person using it. Adapting to sleeping with a mask and a pressurized machine is a complex physical and psychological challenge. Patients often grapple with discomfort, claustrophobia, and the fear of dependence on technology [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. European studies have shown that a patient\u0026rsquo;s \"buy-in\" and the quality of their relationship with healthcare providers are the strongest predictors of adherence [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eIn Kazakhstan, this human journey takes place against a unique backdrop. The country\u0026rsquo;s vast territory creates a stark contrast between high-tech specialized centers in major cities and the primary care available in remote regions. As recent local research emphasizes, there is currently no formalized, integrated service model for home care respiratory support [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. Patients often find themselves navigating a disconnect: initiated on complex therapy in a national center, they return home to regions where local doctors may be unfamiliar with the device.\u003c/p\u003e \u003cp\u003eUnderstanding the lived experience of these patients is crucial. It allows us to move beyond clinical metrics and understand the human reality of managing respiratory failure at home. This study aimed to explore the experiences, fears, and triumphs of patients receiving long-term home NIV in Kazakhstan, to help build a more patient-centered healthcare model.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy Design\u003c/h2\u003e \u003cp\u003eWe employed a phenomenological qualitative design to capture the essence of the participants' experiences. Data collection took place between September and November 2025. The study is reported in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eParticipants\u003c/h3\u003e\n\u003cp\u003eWe recruited 21 participants (patients and close caregivers) dealing with CRF requiring home NIV. To reflect the true diversity of the patient experience, we used purposive sampling to include individuals from major metropolises (Astana, Almaty) as well as remote industrial and rural towns (Aralsk, Ekibastuz, Kokshetau, Aktau, Atyrau). Inclusion criteria were: age\u0026thinsp;\u0026ge;\u0026thinsp;18 years, established on home NIV for at least one month, and the ability to articulate their experience (or have a caregiver do so).\u003c/p\u003e\n\u003ch3\u003eData Collection\u003c/h3\u003e\n\u003cp\u003e To accommodate the participants' health conditions and wide geographic dispersion, semi-structured interviews were conducted via telephone. This approach allowed patients to share their experiences from the safety and comfort of their own home environment. The interviews were led by a female pulmonologist trained in qualitative listening. Crucially, she was not involved in the patients' direct clinical care, which helped establish a rapport based on trust and encouraged participants to speak openly about their challenges without fear of judgement. The semi-structured interview guide was developed specifically for this study based on existing literature [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e] to suit the local context; the full English version of the guide is provided as \u003cem\u003eSupplementary File 1\u003c/em\u003e. The dialogue explored the lived experience of the patient journey from the first symptoms to adapting to life with the device. Additionally, the EQ-5D-3L questionnaire was administered to capture a broader perspective on their well-being.\u003c/p\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eData Analysis\u003c/h2\u003e \u003cp\u003eInterviews were audio-recorded and transcribed verbatim. Thematic analysis was performed using NVivo 12 software (QSR International). An inductive approach was used to identify emerging themes. Two researchers independently coded the transcripts and met to reach a consensus on the final themes. Descriptive statistics were used to analyze the EQ-5D data.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eParticipant Characteristics\u003c/h2\u003e \u003cp\u003eThe study included a diverse group of 21 participants with a median age of 47 years (range 19\u0026ndash;75). The majority (57.1%) were male. Most patients (61.9%) were managing severe respiratory failure requiring a combination of NIV and long-term oxygen therapy (LTOT). Detailed demographics are presented in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eSociodemographic and clinical characteristics of the study participants (n\u0026thinsp;=\u0026thinsp;21)\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCharacteristic\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCategories\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003en (%) or Median (Range)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eAge, years\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e47 (19\u0026ndash;75)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eGender\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e12 (57.1%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e9 (42.9%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eRegion of Residence\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAstana (Capital)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7 (33.3%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAkmola Region (Kokshetau)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (14.3%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePavlodar Region (Ekibastuz, Pavlodar)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (9.5%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAtyrau Region\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (9.5%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMangystau Region (Aktau)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (9.5%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eKostanay Region\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (9.5%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eKyzylorda Region (Aralsk)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (4.8%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eEast Kazakhstan Region\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (4.8%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eKaraganda Region\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (4.8%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eClinical Diagnosis\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCOPD\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e11 (52.4%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eInterstitial Lung Diseases\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4 (19.0%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBronchiectasis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4 (19.0%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCystic Fibrosis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (4.8%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOther (e.g., Kyphoscoliosis)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1 (4.8%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eType of Home Respiratory Support\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNIV\u0026thinsp;+\u0026thinsp;LTOT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e13 (61.9%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eNIV only\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8 (38.1%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"3\"\u003e\u003cem\u003eNote: NIV: Non-Invasive Ventilation; LTOT: Long-term Oxygen Therapy; COPD: Chronic Obstructive Pulmonary Disease.\u003c/em\u003e\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eThe analysis of the interviews revealed five profound themes describing the patient journey. These are summarized alongside the quantitative results in Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eSummary of qualitative themes and quantitative health-related quality of life (EQ-5D) Results\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCategories / Dimensions\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003en (%) or Frequency*\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eQualitative Themes (Total References)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCat 1: Patient\u0026rsquo;s Journey to NIV\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003e58\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1.1. Information deficit in regions / Referral to the Center\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e35\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1.2. Role of family in decision \u0026amp; purchase\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e23\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eCat 2: Adaptation and Usage Experience\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e64\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2.1. Fears (death, mask, dependence) \u0026amp; doubts\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e21\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2.2. Adaptation process (duration)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e19\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2.3. Routine use and independence\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e24\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eCat 3: Impact on Quality of Life\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e82\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3.1. Clinical improvements (sleep, dyspnea, energy)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e48\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3.2. Social activity (work, travel, household)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e34\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eCat 4: Interaction with Healthcare System\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e45\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4.1. Specialized support (telemedicine/WhatsApp)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e28\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4.2. Barriers at the regional PHC level (lack of knowledge)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e17\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eQuantitative Results: EQ-5D-3L (n\u0026thinsp;=\u0026thinsp;21)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003ePatients n (%)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eMobility\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e* Level 1 (No problems)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e13 (61.9%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e* Level 2 (Some problems)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6 (28.6%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e* Level 3 (Confined to bed)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (9.5%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eSelf-Care\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e* Level 1 (No problems)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e16 (76.2%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e* Level 2 (Some problems)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (19.0%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e* Level 3 (Unable to wash/dress)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (4.8%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eUsual Activities\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e* Level 1 (No problems)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10 (47.6%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e* Level 2 (Some problems)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11 (52.4%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e* Level 3 (Unable to perform)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0 (0%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003ePain / Discomfort\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e* Level 1 (No pain)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e13 (61.9%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e* Level 2 (Moderate pain)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7 (33.3%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e* Level 3 (Extreme pain)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (4.8%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eAnxiety / Depression\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e* Level 1 (No anxiety)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e15 (71.4%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e* Level 2 (Moderate anxiety)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 (23.8%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e* Level 3 (Extreme anxiety)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (4.8%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eEQ-VAS Score (0\u0026ndash;100)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003eMean\u0026thinsp;\u0026plusmn;\u0026thinsp;SD\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e* Self-rated health state\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e71.2\u0026thinsp;\u0026plusmn;\u0026thinsp;21.2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e*Note: For qualitative themes, 'n' represents the number of coded references in the transcripts.\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eCategory 1: The Patient’s Journey - Navigating the Unknown\u003c/h3\u003e\n\u003cp\u003eFor many, the journey began with confusion. A striking finding was the \"information vacuum\" in regional areas. 17 out of 21 patients discovered NIV only after travelling to the National Scientific Center in Astana or encountering research doctors. In regions like Aktobe and Aralsk, patients reported that their local physicians were often unaware that such therapy existed for home use.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;In our polyclinic, they have heard about breathing apparatuses, but they don't know how to turn them on or adjust them. We found out ourselves.\u0026rdquo; (Patient 13) \u0026ldquo;In Aralsk, I tell you, this treatment does not exist. You have to go to Astana.\u0026rdquo; (Patient 20)\u003c/em\u003e \u003c/p\u003e\n\u003ch3\u003eCategory 2: The Adaptation Curve - From Fear to Security\u003c/h3\u003e\n\u003cp\u003eThe initial encounter with the machine was often fraught with anxiety. Patients viewed the device with a mix of hope and dread - fearing the \"closed system\" of the mask or worrying they might stop breathing if they fell asleep.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I was afraid I would have to sleep in this mask for the rest of my life. I thought I might suffocate.\u0026rdquo; (Patient 9)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eHowever, contrary to some literature suggesting prolonged struggles, most participants (n\u0026thinsp;=\u0026thinsp;14) reported a surprisingly rapid adaptation (1\u0026ndash;3 days). This was frequently attributed to the immediate symptom relief and the reassurance provided by remote support.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;From the first day, I put on the mask... No one helped me. I adapted immediately.\u0026rdquo; (Patient 14)\u003c/em\u003e \u003c/p\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eCategory 3: Reclaiming Life\u003c/h2\u003e \u003cp\u003eThe impact of therapy was profound. Patients described not just medical improvement, but a return to personhood. The regression of breathlessness and the ability to sleep supine allowed for social reintegration.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I became a human again. A full human being. You just didn't see how I was before.\u0026rdquo; (Patient 12)\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I walk to work calmly, I don't get tired like before... I used to have to sit down, now I just walk.\u0026rdquo; (Patient 14)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eCategory 4: The Digital Lifeline\u003c/h2\u003e \u003cp\u003eThe contrast between local and specialized care was a defining theme. While patients felt unsupported by local clinics, they highly valued the \"digital proximity\" of the research team. WhatsApp and video calls were not just convenient; they were a lifeline that made the therapy sustainable in remote locations.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;In my polyclinic, they don't even ask, they don't know about it... [But] we are in touch with you, even though so much time has passed, you always answer.\u0026rdquo; (Patient 20)\u003c/em\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eCategory 5: Quantitative Validation (EQ-5D)\u003c/h2\u003e \u003cp\u003eThe qualitative sense of \"returning to life\" was supported by the numbers. The mean self-rated health score (EQ-VAS) was 71.2\u0026thinsp;\u0026plusmn;\u0026thinsp;21.2, a high score for this patient population. While physical limitations persisted (with 52.4% reporting problems in \"Usual Activities\"), the low rates of reported anxiety and depression (71.4% with no problems) suggest that effective respiratory support plays a crucial role in stabilizing mental well-being.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eTo our knowledge, this is the first qualitative study exploring the patient experience with home NIV in Kazakhstan. Our findings paint a picture of resilience: patients traversing a fragmented system to find a therapy that ultimately restores their quality of life.\u003c/p\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eAdaptation and the \"Learning Curve\"\u003c/h2\u003e \u003cp\u003eOur participants described a distinct emotional trajectory: from initial fear to a sense of security. This mirrors the findings of Hussain et al. (2025), who identified \"becoming confident\" as a pivotal phase in long-term adherence [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Interestingly, our patients reported a notably rapid adaptation. We hypothesize this is due to the intense \"digital proximity\" of the specialized team: immediate answers via WhatsApp reduced the anxiety often associated with technical alarms or mask discomfort, a barrier frequently cited in European qualitative literature [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eImpact on Sleep and Well-being\u003c/h2\u003e \u003cp\u003eA major motivator for adherence was the tangible improvement in sleep. Patients reported waking up \"fresh\" and free of headaches. This qualitative finding aligns with recent objective data indicating that optimizing NIV settings significantly enhances sleep architecture and reduces sleep fragmentation [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. The restoration of restorative sleep appears to be a key driver for the high self-rated health scores observed in our study.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eHealthcare Interaction: The Digital Safety Net\u003c/h2\u003e \u003cp\u003eThe most critical finding for the healthcare system is the dichotomy between the lack of local expertise and the effectiveness of remote specialized support. While gaps in access to respiratory care are a global challenge [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e], the situation in Kazakhstan is exacerbated by vast distances. Patients explicitly stated that local doctors \"do not know the device.\" This lack of competence regarding complex medical equipment poses a potential risk to patient safety. As highlighted in previous analyses of healthcare offences in Kazakhstan, ensuring professional competence is critical for delivering safe care and reducing medical errors [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eCurrently, telemedicine acts as the primary mode of care for these patients. This supports the conclusion of Serikova et al. that establishing a coordinated home care service is a necessity for the country [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. Our results demonstrate that until such a service is fully implemented, telemedicine remains the critical \"safety net,\" bridging the geographic divide.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eLimitations\u003c/h2\u003e \u003cp\u003eThe study is limited by its sample size (n\u0026thinsp;=\u0026thinsp;21) and the fact that some interviews involved caregivers, which might influence the narrative. However, the diverse geographic representation strengthens the validity of the findings regarding regional disparities.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusions","content":"\u003cp\u003eThis study demonstrates that long-term home NIV is successfully implemented in Kazakhstan and substantially improves patients' quality of life. However, the system relies heavily on the initiative of patients and the remote support of a few specialists. The primary barrier is the \"knowledge gap\" at the regional primary care level.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eNIV\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eNon-Invasive Ventilation\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eCRF\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eChronic Respiratory Failure\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eCOPD\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eChronic Obstructive Pulmonary Disease\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eHRQoL\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eHealth-Related Quality of Life\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eLTOT\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eLong-Term Oxygen Therapy\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003ePHC\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003ePrimary Healthcare\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eCOREQ\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eConsolidated Criteria for Reporting Qualitative Research\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe would like to thank all the patients and their caregivers who participated in this study for their trust, time, and valuable insights.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors' contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAS, IM, and OT designed the study, contributed to the data analysis, and provided critical input on the intellectual content of the work. AS performed the data collection and drafted the original manuscript. All authors reviewed and approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that no funds, grants, or other support were received during the preparation of this manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData availability\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study was conducted in accordance with the Declaration of Helsinki. Ethical approval was granted by the Local Ethics Committee of Astana Medical University (Protocol No. 6, dated 10 April 2025). All participation was voluntary. Informed consent was obtained from all individual participants included in the study. Due to the remote nature of data collection for some participants, consent was obtained both orally (audio-recorded) and in writing.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor details\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003csup\u003e1\u003c/sup\u003eDepartment of internal illnesses №3, Astana Medical University, Astana, Kazakhstan\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003csup\u003e2\u003c/sup\u003eDepartment of Epidemiology and Biostatistics, Astana Medical University, Astana, Kazakhstan.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n \u003cli\u003eErgan B, Oczkowski S, Rochwerg B, et al. European Respiratory Society guidelines on long-term home non-invasive ventilation for management of COPD. Eur Respir J. 2019;54(3):1901003.\u003c/li\u003e\n \u003cli\u003eD\u0026apos;Cruz RF, Kaltsakas G, Suh ES, Hart N. Quality of life in patients with chronic respiratory failure on home mechanical ventilation. Eur Respir Rev. 2023;32(168):220237.\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eMcCormick JL, Clark TA, Shea CM, et al. Exploring the Patient Experience with Noninvasive Ventilation. Chronic Obstr Pulm Dis. 2022;9(1):80-94.\u003c/li\u003e\n \u003cli\u003eMasefield S, Vitacca M, Dreher M, et al. Attitudes and preferences of home mechanical ventilation users from four European countries: an ERS/ELF survey. ERJ Open Res. 2017;3(2):00015-2017.\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eBaigenzhin A, Pak A, Zaripova L, Zarkumova Z, Chuvakova E. Respiratory Support for Patients with Chronic Respiratory Failure: the Necessity of a Long-Term Homecare Ventilation Program. J Clin Med Kaz. 2024;21(5):56-60.\u003c/li\u003e\n \u003cli\u003eCaneiras C, J\u0026aacute;come C, Moreira E, et al. A qualitative study of patient and carer experiences with home respiratory therapies: Long-term oxygen therapy and home mechanical ventilation. Pulmonology. 2022;28(4):268-275.\u003c/li\u003e\n \u003cli\u003eTong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349-57.\u003c/li\u003e\n \u003cli\u003eYacob Hussain NZY, Hassan N, Wong HS, Mok Y, Klainin-Yobas P. Adaptation to Long-Term Home Non-Invasive Ventilation for People with Chronic Hypercapnic Respiratory Failure: A Qualitative Study. Nurs Rep. 2025;15(5):176.\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eKaminska M, Adam V, Orr JE. Home Noninvasive Ventilation in COPD. Chest. 2024;165(6):1372-1379.\u003c/li\u003e\n \u003cli\u003eMansell SK, Kilbride C, Wood MJ, Gowing F, Mandal S. Experiences and views of patients, carers and healthcare professionals on using modems in domiciliary non-invasive ventilation (NIV): a qualitative study. BMJ Open Respir Res. 2020;7(1):e000510.\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eWollsching-Strobel M, Bauer IA, Baur JJ, et al. The Impact of Non-Invasive Ventilation on Sleep Quality in COPD Patients. J Clin Med. 2022;11(18):5483.\u003c/li\u003e\n \u003cli\u003eGillmeyer KR, Shusterman S, Rinne ST, Elwy AR, Wiener RS. Gaps in access to pulmonary hypertension care and opportunities for improvement: a multi-site qualitative study. BMC Pulm Med. 2025;25(1):355.\u003c/li\u003e\n \u003cli\u003eTsigengagel, O., Glushkova, N., Mammadov, V., Khismetova, Z., Gazaliyeva, M., Ibrayeva, Z., \u0026amp; Semenova, Y. (2021). Epidemiology of Offences against Health in the Republic of Kazakhstan: 2015-2019. Journal of law and medicine, 28(2), 492\u0026ndash;502.\u003c/li\u003e\n \u003cli\u003eChatwin M, Hawkins G, Panicchia L, et al. Randomised crossover trial of telemonitoring in chronic respiratory patients (TeleCRAFT trial). Thorax. 2016;71(4):305-311.\u003c/li\u003e\n \u003cli\u003ePierucci P, Portacci A, Carpagnano GE, et al. The right interface for the right patient in noninvasive ventilation: a systematic review. Expert Rev Respir Med. 2022;16(8):931-944.\u003c/li\u003e\n \u003cli\u003eRaurell-Torred\u0026agrave; M, Argilaga-Molero E, Colomer-Plana M, R\u0026oacute;denas-Francisco A, Garcia-Olm M. Nurses\u0026apos; and physicians\u0026apos; knowledge and skills in non-invasive ventilation: Equipment and contextual influences. Conocimiento y habilidades de enfermeras y m\u0026eacute;dicos en ventilaci\u0026oacute;n mec\u0026aacute;nica no invasiva: equipamiento e influencias contextuales. Enferm Intensiva (Engl Ed). 2019;30(1):21-32.\u003c/li\u003e\n \u003cli\u003eVolpato E, Banfi P, Pagnini F. Promoting Acceptance and Adherence to Noninvasive Ventilation in Chronic Obstructive Pulmonary Disease: A Randomized Controlled Trial. Psychosom Med. 2022;84(4):488-504.\u003c/li\u003e\n \u003cli\u003eToujani S, Dabboussi S, Snene H, et al. Ventilation non invasive \u0026agrave; domicile au cours de la broncho-pneumopathie chronique obstructive [Home non-invasive ventilation for chronic obstructive pulmonary disease]. Rev Pneumol Clin. 2018;74(4):235-241.\u003c/li\u003e\n \u003cli\u003eDuiverman ML, Vonk JM, Bladder G, et al. Home initiation of chronic non-invasive ventilation in COPD patients with chronic hypercapnic respiratory failure: a randomised controlled trial. Thorax. 2020;75(3):244-252.\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eSchwarz SB, Mathes T, Majorski DS, et al. Living conditions and autonomy levels in COPD patients receiving non-invasive ventilation: impact on health related quality of life. BMC Pulm Med. 2021;21(1):255.\u003c/li\u003e\n \u003cli\u003eFarre R, Lloyd-Owen SJ, Ambrosino N, et al. Quality control of equipment in home mechanical ventilation: a European survey. Eur Respir J. 2005;26(1):86-94.\u003c/li\u003e\n \u003cli\u003eCantarini KV, Sanches RP, Donini VV, Pires R, Gaspar HA. Telemonitoring in Home Mechanical Ventilation. J Bras Pneumol. 2022;48(6):e20220142.\u0026nbsp;\u003c/li\u003e\n \u003cli\u003ePla-Canalda E, Jim\u0026eacute;nez-Herrera MF, Fern\u0026aacute;ndez-S\u0026aacute;ez J, Concha-Mart\u0026iacute;nez P, Mart\u0026iacute;nez-Segura E. Impact of Educational Intervention on NIMV: \u0026apos;Impact of Educational Intervention on Noninvasive Ventilation (NIV) in Nurses and Students\u0026apos;. Clin Teach. 2025;22(5):e70168.\u003c/li\u003e\n \u003cli\u003eWindisch W, Freidel K, Schucher B, et al. The Severe Respiratory Insufficiency (SRI) Questionnaire: a specific measure of health-related quality of life in patients receiving home mechanical ventilation. J Clin Epidemiol. 2003;56(8):752-759.\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eAckrivo J, Elman L, Hansen-Flaschen J. Telemonitoring for Home-assisted Ventilation: A Narrative Review. Ann Am Thorac Soc. 2021;18(11):1761-1772.\u003c/li\u003e\n \u003cli\u003eFagerudd S, Lammintausta A, Laitinen T, Anttalainen U, Saaresranta T. Home non-invasive ventilation: An observational study of aetiology, chronic respiratory failure of multiple aetiologies, survival and treatment adherence. Heliyon. 2024;10(12):e32508.\u003c/li\u003e\n \u003cli\u003ePatout M, Lhuillier E, Kaltsakas G, et al. Long-term survival following initiation of home non-invasive ventilation: a European study. Thorax. 2020;75(11):965-973.\u003c/li\u003e\n \u003cli\u003eChao C, Berlowitz DJ, Howard ME, Rautela L, McDonald LA, Hannan LM. Measuring Adherence to Long-Term Noninvasive Ventilation. Respir Care. 2021;66(9):1469-1476\u003c/li\u003e\n \u003cli\u003ePiroddi IMG, Barlascini C, Esquinas A, Braido F, Banfi P, Nicolini A. Non-invasive mechanical ventilation in elderly patients: A narrative review. Geriatr Gerontol Int. 2017;17(5):689-696.\u003c/li\u003e\n \u003cli\u003eMasa JF, Corral J, Caballero C, et al. Non-invasive ventilation in obesity hypoventilation syndrome without severe obstructive sleep apnoea. Thorax. 2016;71(10):899-906.\u0026nbsp;\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-pulmonary-medicine","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pulm","sideBox":"Learn more about [BMC Pulmonary Medicine](http://bmcpulmmed.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pulm/default.aspx","title":"BMC Pulmonary Medicine","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Long-term non-invasive ventilation, Chronic respiratory failure, Patient experience, Quality of life, Telemedicine, Kazakhstan","lastPublishedDoi":"10.21203/rs.3.rs-8299150/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8299150/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eFor 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.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eWe 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.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eThe patient experience was synthesized into five interconnected themes: (1) The Patient\u0026rsquo;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.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eLong-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.\u003c/p\u003e","manuscriptTitle":"Patient and Caregiver Experience with Long-Term Home Non-Invasive Ventilation in Kazakhstan: A Qualitative Study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-01-12 05:50:59","doi":"10.21203/rs.3.rs-8299150/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2026-04-02T11:22:42+00:00","index":"","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-01-07T03:55:24+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-01-05T12:04:25+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-12-12T13:58:51+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-12-10T15:40:35+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Pulmonary Medicine","date":"2025-12-10T15:30:22+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-pulmonary-medicine","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pulm","sideBox":"Learn more about [BMC Pulmonary Medicine](http://bmcpulmmed.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pulm/default.aspx","title":"BMC Pulmonary Medicine","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"9dd2c7f8-c748-4797-872a-e141917c550c","owner":[],"postedDate":"January 12th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-04-08T11:53:25+00:00","versionOfRecord":[],"versionCreatedAt":"2026-01-12 05:50:59","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8299150","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8299150","identity":"rs-8299150","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}