{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,2]],"date-time":"2026-07-02T16:06:36Z","timestamp":1783008396182,"version":"3.54.5"},"reference-count":57,"publisher":"MDPI AG","issue":"17","license":[{"start":{"date-parts":[[2025,9,5]],"date-time":"2025-09-05T00:00:00Z","timestamp":1757030400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Jagiellonian University Medical College","award":["N43\/DBS\/000289"],"award-info":[{"award-number":["N43\/DBS\/000289"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JCM"],"abstract":"<jats:p>Background\/Objectives: Home mechanical ventilation (HMV) is a therapeutic approach that enables individuals with chronic respiratory failure to be cared for in home settings, thereby improving their quality of life. However, it also imposes a substantial burden on informal caregivers. This scoping review aimed to explore and synthesize current research on the psychosocial well-being of informal caregivers of adults receiving HMV and to identify existing knowledge gaps. Methods: Following PRISMA-ScR guidelines, six electronic databases were systematically searched without language or date restrictions. Eligible studies were original, peer-reviewed publications focusing on informal caregivers of adults receiving HMV. Relevant data were extracted and analyzed. Results: A total of 38 studies met the inclusion criteria. The majority of caregivers were women, most commonly spouses or partners. Caregivers frequently experienced high levels of burden, anxiety, depression, fatigue, and reduced quality of life. Common challenges included social isolation, sleep disturbances, and financial difficulties. Caregivers employed a range of coping strategies, both adaptive and maladaptive. Many reported unmet needs, particularly in the areas of psychological, informational, and professional support. Conclusions: Providing care for individuals receiving HMV is complex and demanding. While some caregivers find meaning and fulfillment in their role, many experience significant physical, emotional, and psychological challenges. These findings highlight the urgent need for comprehensive, individualized interventions aimed at reducing caregiver burden, enhancing quality of life, and ensuring better integration of caregivers into the broader care continuum.<\/jats:p>","DOI":"10.3390\/jcm14176294","type":"journal-article","created":{"date-parts":[[2025,9,5]],"date-time":"2025-09-05T14:53:01Z","timestamp":1757083981000},"page":"6294","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Psychosocial Well-Being of Informal Caregivers of Adults Receiving Home Mechanical Ventilation: A Scoping Review"],"prefix":"10.3390","volume":"14","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-2170-3760","authenticated-orcid":false,"given":"Jakub","family":"Cicho\u0144","sequence":"first","affiliation":[{"name":"Department of Specialized Nursing, Faculty of Health Sciences, Jagiellonian University Medical College, 31-501 Krak\u00f3w, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Monika","family":"Homa","sequence":"additional","affiliation":[{"name":"Aestimo s.c., 31-062 Krak\u00f3w, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0767-6559","authenticated-orcid":false,"given":"Lucyna","family":"P\u0142aszewska-\u017bywko","sequence":"additional","affiliation":[{"name":"Department of Specialized Nursing, Faculty of Health Sciences, Jagiellonian University Medical College, 31-501 Krak\u00f3w, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria","family":"K\u00f3zka","sequence":"additional","affiliation":[{"name":"Department of Specialized Nursing, Faculty of Health Sciences, Jagiellonian University Medical College, 31-501 Krak\u00f3w, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2025,9,5]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"439","DOI":"10.1097\/00002060-200106000-00011","article-title":"Psychosocial Problems Arising from Home Ventilation","volume":"80","author":"Velthuis","year":"2001","journal-title":"Am. J. Phys. Med. Rehabil."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"131","DOI":"10.4266\/acc.2020.00514","article-title":"Home Mechanical Ventilation: Back to Basics","volume":"35","author":"Park","year":"2020","journal-title":"Acute Crit. Care"},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"140","DOI":"10.1016\/S1474-4422(05)70326-4","article-title":"Effects of Non-Invasive Ventilation on Survival and Quality of Life in Patients with Amyotrophic Lateral Sclerosis: A Randomised Controlled Trial","volume":"5","author":"Bourke","year":"2006","journal-title":"Lancet Neurol."},{"key":"ref_4","first-page":"CD001941","article-title":"Nocturnal Mechanical Ventilation for Chronic Hypoventilation in Patients with Neuromuscular and Chest Wall Disorders","volume":"2014","author":"Annane","year":"2014","journal-title":"Cochrane Database Syst. Rev."},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"357","DOI":"10.1513\/AnnalsATS.201708-663OC","article-title":"Transitions to Home Mechanical Ventilation: The Experiences of Canadian Ventilator-Assisted Adults and Their Family Caregivers","volume":"15","author":"Dale","year":"2018","journal-title":"Ann. Am. Thorac. Soc."},{"key":"ref_6","doi-asserted-by":"crossref","unstructured":"Kwiatosz-Muc, M., Kopacz, B., and Fija\u0142kowska-Nestorowicz, A. (2023). Quality of Life and Stress Levels in Patients under Home Mechanical Ventilation: What Can We Do to Improve Functioning Patients at Home? A Survey Study. Int. J. Environ. Res. Public Health, 20.","DOI":"10.3390\/ijerph20010874"},{"key":"ref_7","doi-asserted-by":"crossref","unstructured":"P\u0142aszewska-\u017bywko, L., Fajfer-Gryz, I., Cicho\u0144, J., and K\u00f3zka, M. (2024). Burden, Social Support, and Coping Strategies in Family Caregivers of Individuals Receiving Home Mechanical Ventilation: A Cross-Sectional Study. BMC Nurs., 23.","DOI":"10.1186\/s12912-024-02024-6"},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"380","DOI":"10.4187\/respcare.05689","article-title":"Home Mechanical Ventilation: A 12-Year Population-Based Retrospective Cohort Study","volume":"63","author":"Povitz","year":"2018","journal-title":"Respir. Care"},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"467","DOI":"10.7326\/M18-0850","article-title":"PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation","volume":"169","author":"Tricco","year":"2018","journal-title":"Ann. Intern. Med."},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"2119","DOI":"10.11124\/JBIES-20-00167","article-title":"Updated Methodological Guidance for the Conduct of Scoping Reviews","volume":"18","author":"Peters","year":"2020","journal-title":"JBI Evid. Synth."},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"103525","DOI":"10.1016\/j.amjoto.2022.103525","article-title":"Amplifying Patient Voices amid Pandemic: Perspectives on Tracheostomy Care, Communication, and Connection","volume":"43","author":"Pandian","year":"2022","journal-title":"Am. J. Otolaryngol."},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"n71","DOI":"10.1136\/bmj.n71","article-title":"The PRISMA 2020 Statement: An Updated Guideline for Reporting Systematic Reviews","volume":"372","author":"Page","year":"2021","journal-title":"BMJ"},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"125","DOI":"10.1080\/21678421.2022.2079993","article-title":"Care Burden and Related Factors among Informal Caregivers of Patients with Amyotrophic Lateral Sclerosis","volume":"24","author":"Alankaya","year":"2023","journal-title":"Amyotroph. Lateral Scler. Frontotemporal Degener."},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"807","DOI":"10.1093\/fampra\/cmae027","article-title":"An Investigation of the Effect of the Universal Model of Family-Centered Care on Patient and Family Outcomes in Patients under Home Invasive Mechanical Ventilation","volume":"41","author":"Kavand","year":"2024","journal-title":"Fam. Pract."},{"key":"ref_15","doi-asserted-by":"crossref","unstructured":"Klingshirn, H., Gerken, L., Hofmann, K., Heuschmann, P.U., Haas, K., Schutzmeier, M., Brandstetter, L., Wurmb, T., Kippnich, M., and Reuschenbach, B. (2022). Comparing the Quality of Care for Long-Term Ventilated Individuals at Home versus in Shared Living Communities: A Convergent Parallel Mixed-Methods Study. BMC Nurs., 21.","DOI":"10.1186\/s12912-022-00986-z"},{"key":"ref_16","doi-asserted-by":"crossref","unstructured":"Schaepe, C., and Ewers, M. (2018). \u201cI See Myself as Part of the Team\u201d\u2014Family Caregivers\u2019 Contribution to Safety in Advanced Home Care. BMC Nurs., 17.","DOI":"10.1186\/s12912-018-0308-9"},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"229","DOI":"10.1177\/10784535231195507","article-title":"Effectiveness of a Supportive Program on Caregiver Burden of Families Caring for Patients on Invasive Mechanical Ventilation at Home: An Experimental Study","volume":"29","author":"Esmaeili","year":"2023","journal-title":"Creat. Nurs."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"1498","DOI":"10.1378\/chest.119.5.1498","article-title":"Caregiver Strain Associated with Tracheostomy in Chronic Respiratory Failure","volume":"119","author":"Ferrario","year":"2001","journal-title":"Chest"},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"874","DOI":"10.18621\/eurj.1143986","article-title":"Hidden Face of Chronic Obstructive Pulmonary Disease: Effects of Patients\u2019 Psychiatric Symptoms on Caregivers\u2019 Burden and Quality of Life","volume":"9","author":"Aydin","year":"2023","journal-title":"Eur. Res. J."},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"e25","DOI":"10.1097\/JNN.0000000000000075","article-title":"Ventilator Use, Respiratory Problems, and Caregiver Well-Being in Korean Patients with Amyotrophic Lateral Sclerosis Receiving Home-Based Care","volume":"46","author":"Kim","year":"2014","journal-title":"J. Neurosci. Nurs."},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"6","DOI":"10.1002\/j.2048-7940.1994.tb01295.x","article-title":"Caring for Individuals Using Home Ventilators: An Appraisal by Family Caregivers","volume":"19","author":"Findeis","year":"1994","journal-title":"Rehabil. Nurs."},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"652","DOI":"10.1177\/17423953211026362","article-title":"A Contextual Needs Assessment of Families with Home Invasive Mechanical Ventilation Patients: A Qualitative Study","volume":"18","author":"Esmaeili","year":"2022","journal-title":"Chronic Illn."},{"key":"ref_23","first-page":"41","article-title":"Adaptation of Caregivers of Individuals on Mechanical Ventilation to Caregiving Role","volume":"28","author":"Aydin","year":"2024","journal-title":"Indian J. Crit. Care Med."},{"key":"ref_24","first-page":"373","article-title":"Family Caregiver Perspectives on Caring for Ventilator-Assisted Individuals at Home","volume":"19","author":"Evans","year":"2012","journal-title":"Can. Respir. J."},{"key":"ref_25","doi-asserted-by":"crossref","first-page":"430","DOI":"10.1016\/j.rmed.2007.10.006","article-title":"Outcome and Attitudes toward Home Tracheostomy Ventilation of Consecutive Patients: A 10-Year Experience","volume":"102","author":"Marchese","year":"2008","journal-title":"Respir. Med."},{"key":"ref_26","doi-asserted-by":"crossref","first-page":"1602","DOI":"10.1089\/jpm.2013.0211","article-title":"The Impact on the Family Carer of Motor Neurone Disease and Intervention with Noninvasive Ventilation","volume":"16","author":"Baxter","year":"2013","journal-title":"J. Palliat. Med."},{"key":"ref_27","doi-asserted-by":"crossref","first-page":"890","DOI":"10.1016\/S0885-3924(03)00323-3","article-title":"Quality of Life and Psychosocial Issues in Ventilated Patients with Amyotrophic Lateral Sclerosis and Their Caregivers","volume":"26","author":"Wasner","year":"2003","journal-title":"J. Pain Symptom. Manag."},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"61","DOI":"10.1159\/000087460","article-title":"Burden and Coping Strategies in Families of Patients under Noninvasive Home Mechanical Ventilation","volume":"73","author":"Tsara","year":"2006","journal-title":"Respiration"},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"1686","DOI":"10.1111\/j.1365-2702.2009.03007.x","article-title":"Role Adaptation of Family Caregivers for Ventilator-Dependent Patients: Transition from Respiratory Care Ward to Home","volume":"19","author":"Huang","year":"2010","journal-title":"J. Clin. Nurs."},{"key":"ref_30","doi-asserted-by":"crossref","first-page":"746","DOI":"10.1080\/09638288.2017.1408148","article-title":"The Experience of Parents of Adult Sons with Duchenne Muscular Dystrophy Regarding Their Prolonged Roles as Primary Caregivers: A Serial Qualitative Study","volume":"41","author":"Yamaguchi","year":"2019","journal-title":"Disabil. Rehabil."},{"key":"ref_31","doi-asserted-by":"crossref","first-page":"e2157","DOI":"10.1111\/hsc.13654","article-title":"Home Health Care for Mechanical Ventilation-Dependent Patients: A Grounded Theory Study","volume":"30","author":"Khankeh","year":"2022","journal-title":"Health Soc. Care Community"},{"key":"ref_32","first-page":"157","article-title":"Caregiver Learning Needs and Reactions to Managing Home Mechanical Ventilation","volume":"23","author":"Smith","year":"1994","journal-title":"Heart Lung"},{"key":"ref_33","doi-asserted-by":"crossref","unstructured":"Volpato, E., Vitacca, M., Ptacinsky, L., Lax, A., D\u2019Ascenzo, S., Bertella, E., Paneroni, M., Grilli, S., and Banfi, P. (2022). Home-Based Adaptation to Night-Time Non-Invasive Ventilation in Patients with Amyotrophic Lateral Sclerosis: A Randomized Controlled Trial. J. Clin. Med., 11.","DOI":"10.3390\/jcm11113178"},{"key":"ref_34","doi-asserted-by":"crossref","first-page":"306","DOI":"10.1002\/mus.28115","article-title":"Burden and Preparedness of Care Partners of People Living with Amyotrophic Lateral Sclerosis at Home in Korea: A Care Partner Survey","volume":"70","author":"Lee","year":"2024","journal-title":"Muscle Nerve"},{"key":"ref_35","doi-asserted-by":"crossref","first-page":"38","DOI":"10.12968\/bjnn.2006.2.1.20501","article-title":"A Study of the Burden of Caring for Patients with Amyotrophic Lateral Sclerosis (MND) in Japan","volume":"2","author":"Akiyama","year":"2006","journal-title":"Br. J. Neurosci. Nurs."},{"key":"ref_36","doi-asserted-by":"crossref","first-page":"283","DOI":"10.1002\/nop2.213","article-title":"A Qualitative Study of Experiences of Health and Social Care in Home Mechanical Ventilation","volume":"6","author":"MacLaren","year":"2019","journal-title":"Nurs. Open"},{"key":"ref_37","first-page":"180","article-title":"Caring for the Person Receiving Ventilatory Support at Home: Care Givers\u2019 Needs and Involvement","volume":"21","author":"Thomas","year":"1992","journal-title":"Heart Lung"},{"key":"ref_38","doi-asserted-by":"crossref","first-page":"e7396","DOI":"10.1097\/MD.0000000000007396","article-title":"Burden on Caregivers of Ventilator-Dependent Patients: A Cross-Sectional Study","volume":"96","author":"Liu","year":"2017","journal-title":"Medicine"},{"key":"ref_39","doi-asserted-by":"crossref","first-page":"418","DOI":"10.1016\/j.jamda.2020.06.038","article-title":"Prolonged Mechanical Ventilation: A Comparison of Patients Treated at Home Compared With Hospital Long-Term Care","volume":"22","author":"Jacobs","year":"2021","journal-title":"J. Am. Med. Dir. Assoc."},{"key":"ref_40","doi-asserted-by":"crossref","unstructured":"Liang, H.-Y., Lee, M.-D., Lin, K.-C., Lin, L.-H., and Yu, S. (2022). Determinants of the Health Care Service Choices of Long-Term Mechanical Ventilation Patients: Applying Andersen\u2019s Behavioral Model. PLoS ONE, 17.","DOI":"10.1371\/journal.pone.0274303"},{"key":"ref_41","doi-asserted-by":"crossref","first-page":"429","DOI":"10.1017\/S147895152200027X","article-title":"Prolonged Mechanical Ventilation and Caregiver Strain: Home vs. Long-Term Care Facility","volume":"21","author":"Marcus","year":"2023","journal-title":"Palliat. Support Care"},{"key":"ref_42","doi-asserted-by":"crossref","first-page":"114","DOI":"10.1080\/14038190701803351","article-title":"Patients\u2019 with ALS and Caregivers\u2019 Experiences of Non-Invasive Home Ventilation","volume":"11","author":"Sundling","year":"2009","journal-title":"Adv. Physiother."},{"key":"ref_43","doi-asserted-by":"crossref","first-page":"120","DOI":"10.1080\/21642850.2018.1462708","article-title":"Negotiating Boundaries of Care: An Interpretative Phenomenological Analysis of the Relational Conflicts Surrounding Home Mechanical Ventilation Following Traumatic Spinal Cord Injury","volume":"6","author":"Dickson","year":"2018","journal-title":"Health Psychol. Behav. Med."},{"key":"ref_44","first-page":"349","article-title":"Adaptation in Families with a Member Requiring Mechanical Ventilation at Home","volume":"20","author":"Smith","year":"1991","journal-title":"Heart Lung"},{"key":"ref_45","doi-asserted-by":"crossref","first-page":"438","DOI":"10.1212\/WNL.43.2.438","article-title":"Home Ventilation for Amyotrophic Lateral Sclerosis Patients: Outcomes, Costs, and Patient, Family, and Physician Attitudes","volume":"43","author":"Moss","year":"1993","journal-title":"Neurology"},{"key":"ref_46","doi-asserted-by":"crossref","first-page":"239","DOI":"10.1080\/21678421.2024.2416668","article-title":"NIV@Home: A Pilot Randomized Controlled Trial of in-Home Noninvasive Ventilation Initiation Compared to a Single-Day Admission Model","volume":"26","author":"Sheers","year":"2024","journal-title":"Amyotroph. Lateral Scler. Front. Degener."},{"key":"ref_47","doi-asserted-by":"crossref","first-page":"7","DOI":"10.5498\/wjp.v6.i1.7","article-title":"Gender Differences in Caregiving among Family\u2014Caregivers of People with Mental Illnesses","volume":"6","author":"Sharma","year":"2016","journal-title":"World J. Psychiatr."},{"key":"ref_48","first-page":"e10","article-title":"Burden and Gender Inequalities around Informal Care","volume":"38","year":"2020","journal-title":"Invest. Educ. Enferm."},{"key":"ref_49","first-page":"438","article-title":"Caregiver Burden: A Concept Analysis","volume":"7","author":"Liu","year":"2020","journal-title":"Int. J. Nurs. Sci."},{"key":"ref_50","doi-asserted-by":"crossref","unstructured":"Choi, J.Y., Lee, S.H., and Yu, S. (2024). Exploring Factors Influencing Caregiver Burden: A Systematic Review of Family Caregivers of Older Adults with Chronic Illness in Local Communities. Healthcare, 12.","DOI":"10.3390\/healthcare12101002"},{"key":"ref_51","doi-asserted-by":"crossref","first-page":"1875","DOI":"10.1111\/jan.13695","article-title":"Quality of Life, Anxiety, Depression and Burden among Stroke Caregivers: A Longitudinal, Observational Multicentre Study","volume":"74","author":"Pucciarelli","year":"2018","journal-title":"J. Adv. Nurs."},{"key":"ref_52","doi-asserted-by":"crossref","first-page":"1277","DOI":"10.1002\/gps.4504","article-title":"Effectiveness of Respite Care in Supporting Informal Caregivers of Persons with Dementia: A Systematic Review","volume":"31","author":"Vandepitte","year":"2016","journal-title":"Int. J. Geriat. Psychiatry"},{"key":"ref_53","doi-asserted-by":"crossref","unstructured":"Del-Pino-Casado, R., Priego-Cubero, E., L\u00f3pez-Mart\u00ednez, C., and Orgeta, V. (2021). Subjective Caregiver Burden and Anxiety in Informal Caregivers: A Systematic Review and Meta-Analysis. PLoS ONE, 16.","DOI":"10.1371\/journal.pone.0247143"},{"key":"ref_54","doi-asserted-by":"crossref","unstructured":"Hajek, A., Kretzler, B., and K\u00f6nig, H.-H. (2021). Informal Caregiving, Loneliness and Social Isolation: A Systematic Review. Int. J. Environ. Res. Public Health, 18.","DOI":"10.3390\/ijerph182212101"},{"key":"ref_55","doi-asserted-by":"crossref","unstructured":"Liu, C., Hu, J., and Bai, X. (2023). A Systematic Review of Literature on Caregiving Preparation of Adult Children. Int. J. Environ. Res. Public Health, 20.","DOI":"10.3390\/ijerph20136295"},{"key":"ref_56","doi-asserted-by":"crossref","unstructured":"Gaspar, T., Raimundo, M., De Sousa, S.B., Barata, M., and Cabrita, T. (2023). Relationship between Burden, Quality of Life and Difficulties of Informal Primary Caregivers in the Context of the COVID-19 Pandemic: Analysis of the Contributions of Public Policies. Int. J. Environ. Res. Public Health, 20.","DOI":"10.3390\/ijerph20065205"},{"key":"ref_57","doi-asserted-by":"crossref","first-page":"gbad165","DOI":"10.1093\/geronb\/gbad165","article-title":"Quality of Relationships and Caregiver Burden: A Longitudinal Study of Caregivers for Advanced Cancer Patients","volume":"79","author":"Sun","year":"2024","journal-title":"J. Gerontol. Ser. B"}],"container-title":["Journal of Clinical Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2077-0383\/14\/17\/6294\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,9]],"date-time":"2025-10-09T18:41:01Z","timestamp":1760035261000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2077-0383\/14\/17\/6294"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,9,5]]},"references-count":57,"journal-issue":{"issue":"17","published-online":{"date-parts":[[2025,9]]}},"alternative-id":["jcm14176294"],"URL":"https:\/\/doi.org\/10.3390\/jcm14176294","relation":{},"ISSN":["2077-0383"],"issn-type":[{"value":"2077-0383","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,9,5]]}}}