A Randomized Controlled Trial Comparing the Effect of Tracheostomy Training using Mannequin-Based Simulation and Smartphone Application on Self-Efficacy and Anxiety of Caregivers.

Inefficient education is a cause of anxiety and low self-efficacy among caregivers, especially for those caring for patients with tracheostomy. This randomized controlled trial aimed to compare the outcomes of tracheostomy care education by mannequin-based simulation and smartphone application. The participants were 126 primary caregivers of tracheostomy patients being discharged home from hospitals affiliated with Tehran University of Medical Sciences. The control group received routine care. Caregiver self-efficacy was assessed using the Caregiver Inventory and the Hamilton Anxiety Rating Scale prior to the education and 1 month after. There were significant differences among the three groups regarding the mean scores of self-efficacy and anxiety. There was a significant increase in self-efficacy (P ≤ .0001) and a significant decrease in anxiety (P ≤ .0001) scores after the intervention. The intergroup comparison showed a significant difference between the intervention groups and the control group in terms of changes in the anxiety and self-efficacy scores of caregivers (P < .001).

Longing for a Voice: A Qualitative Study.

Tracheostomy involves a challenging care process in which both patients and caregivers have difficulty communicating. Loss of speaking ability negatively affects caregivers as well as patients. The objective of this study was to examine the experiences of caregivers of patients with tracheostomy during care and after the first vocal exercise. This is a qualitative interview study using in-depth interviews. We used Colaizzi's method of data analysis. The interviews were carried out with 17 caregivers from March to July 2023. Two main themes were identified: the communication process and the first time hearing the patient's voice. In addition, communication techniques, difficulty in communication, providing motivation, and emotions were considered as subthemes. A better quality of care can be provided by understanding the experiences of caregivers of patients with tracheostomy, by sharing feelings and thoughts, and by using patient-specific communication methods.

Anxiety Levels of Primary Caregivers of Children With Tracheostomy During the COVID-19 Pandemic.

We aim to evaluate the anxiety levels of caregivers of children with tracheostomy during the COVID-19 (coronavirus disease 2019) pandemic. Caregivers of 31 children with tracheostomy and 105 healthy children (control group) were included. The State-Trait Anxiety Inventory was administered via teleconference in order to investigate how participants describe how they feel at a particular moment (State) and how they generally feel (Trait). The trait anxiety levels of caregivers of children with tracheostomy were significantly higher (P = .02). Their state anxiety levels were similar. The state and trait anxiety levels of caregivers of children with tracheostomy correlated (r = 0.70, P < .001). At the end of the teleconference, caregivers of children with tracheostomy experienced greater anxiety relief than controls (P < .001). Trait anxiety scores were higher among caregivers of children with tracheostomy, but their state anxiety levels were comparable to those of controls. Caregivers with high trait anxiety also exhibited high state anxiety. Informing caregivers of children with tracheostomy about COVID-19 via teleconference can reduce their anxiety during such stressful times.

Implementation of an Online Multimedia Pediatric Tracheostomy Care Module for Healthcare Providers.

OBJECTIVES/HYPOTHESIS: To investigate the effect of a multimedia educational module on provider attitudes toward pediatric tracheostomy care. We also describe the process of module development and dissemination at an academic children's hospital. STUDY DESIGN: Prospective observational study. METHODS: The pediatric airway committee at an urban tertiary care center developed a multimedia pediatric tracheostomy care module. Nurses, respiratory therapists, as well as resident, fellow, and attending physicians caring for pediatric patients with tracheostomies were eligible. Managers and clinical supervisors from various units recruited participants to complete the pediatric tracheostomy care electronic module and pre- and postassessment knowledge quizzes and surveys. Provider confidence was analyzed using Kruskal-Wallis H-test and Mann-Whitney U-test, and paired t-test was used to compare pre- and postmodule quiz scores. RESULTS: A total of 422 participants completed the module. A total of 275 participants completed the premodule survey, 385 completed the premodule quiz, 253 completed the postmodule survey, and 233 completed the postmodule quiz. Participants included providers in the neonatal intensive care unit, pediatric intensive care unit, pediatric emergency department, and pediatric wards. Postmodule surveys demonstrated a significant reduction in the average percentage of participants indicating lack of confidence with regards to changing an established tracheostomy, responding to accidental decannulation of established tracheostomy, and responding to accidental decannulation of fresh tracheostomy (P < .001). Average quiz scores increased by 5.6 points from 83.0% to 88.6% (P < .00001). CONCLUSIONS: A multimedia educational module can improve provider perception of their knowledge and confidence surrounding pediatric tracheostomy management. LEVEL OF EVIDENCE: 3 Laryngoscope, 131:1893-1901, 2021.

The Suffering Child: Claims of Suffering in Seminal Cases and What To Do About Them.

In all of medicine, there is perhaps nothing so distressing as bearing witness to a patient's suffering, especially if that patient is a child. We want to do everything that we can to avoid or alleviate a child's suffering, yet what do clinicians, ethicists, lawyers, or family members mean when they use the term "suffering," and how should these claims of suffering factor into pediatric decision-making? This question of suffering and what to do about it has played a key role in several prominent pediatric cases over the past decade, including the cases of Charlie Gard, Alfie Evans, and Baby Joseph. These cases have become seminal cases precisely because there is no clear resolution, and the "suffering child" continues to challenge our moral ideals of what it means to live a good life. In this article, I explore the various ways in which the concept of suffering is used in these cases, and I offer new ways in which parents, providers, and all those who work with sick children can approach the suffering child.

Relationships Among Body Perception, Life Satisfaction, and Attitude Toward Seeking Psychological Help in Patients With a Tracheostomy After Discharge: A Descriptive and Cross-sectional Study.

A patient with a tracheostomy may have impaired body perception, reduced life satisfaction, and a need for psychological help after discharge. PURPOSE: This study aimed to investigate the relationships among body perception, life satisfaction, and attitude toward seeking psychological help in patients with a tracheostomy after discharge. METHODS: The data were collected between November 2019 and January 2020. The sample consisted of 60 patients with a tracheostomy who agreed to participate in the study voluntarily, were discharged with a tracheostomy, and continued home care for at least 1 month (maximum 3 months) after discharge. Thirty-three (33) of these patients (55%) were older than 65 years of age, and 45 patients (75%) were female. The Sociodemographic Characteristics Form, the Body Cathexis Scale, the Satisfaction With Life Scale, and the Attitude Scale toward Seeking Psychological Help were used in data collection. Data were collected via face-to-face interviews between patients and researchers using paper-and-pencil questionnaires and were analyzed. Descriptive statistics, independent samples t-test, analysis of variance, and Pearson correlation analysis were used to analyze the data; P < .05 was accepted as the level of significance. RESULTS: The mean Body Cathexis Scale score of all 60 patients was 127.03 ± 29.02 (minimum 40; maximum 200), their mean score on the the Satisfaction With Life scale was 16.20 ± 6.55 (minimum 5; maximum 35), and the mean score on the Attitude Scale toward Seeking Psychological Help was 55.21 ± 12.19 (minimum 18; maximum 90). Statistically significant correlations were found between body perceptions and life satisfaction (r = 0.419, P <.001), body perceptions and attitude toward seeking psychological help (r = 0.530, P < .001), and life satisfaction and attitude toward seeking psychological help (r = 0.448, P < .001). CONCLUSION: In this study, patients with a tracheostomy who had a good body perception and higher life satisfaction had a more positive attitude toward seeking psychological help. Additional studies are needed to confirm these results and explore the effects of correlations to improve the well-being of persons with a tracheostomy.

Identifying Caregiver Needs for Children With a Tracheostomy Living at Home.

This study sought to understand caregiver needs of children with tracheostomies (CWT) living at home and inform development of standardized tracheostomy simulation training curricula. Long-term goals are decreasing hospital readmissions following tracheostomy placement and improving family experiences while implementing a medical home model. We recruited caregivers of CWT and conducted semistructured interviews, subsequently recorded, transcribed, and analyzed for emerging themes using NVivo. Demographic data were collected via quantitative surveys. Twenty-seven caregivers participated. Emerging themes included the following: (1) caregivers felt overwhelmed, sad, frightened when learning need for tracheostomy; (2) training described as adequate, but individualized training desired; (3) families felt prepared to go home, but transition was difficult; (4) home nursing care fraught with difficulty and yet essential for families of CWT. Families of CWT have specific needs related to discharge training, resources, support, and home nursing. Provider understanding of caregiver needs is essential for child well-being, patient-/family-centered care, and may improve health outcomes.

Quantifying the benefits from a care coordination program for tracheostomy placement in neonates.

OBJECTIVE: Value-based care models are becoming instrumental in structuring clinical care delivery in our healthcare climate. Our objective was to determine the value associated with implementation of a Family-Centered Care Coordination (FCCC) program for neonates undergoing tracheostomy. METHODS: A multi-disciplinary FCCC program was implemented at the Massachusetts Eye and Ear Infirmary and MassGeneral Hospital for Children in January 2013. This program is designed to ensure a safe transition out of the hospital for children undergoing tracheostomy, reduce re-admission rates, and increase caregiver quality of life (QOL). Study participants included neonates undergoing tracheostomy in 2012 and 2015. This retrospective cohort study examined length of stay (LOS), utilized time-driven activity-based costing to estimate the cost of care, assessed caregiver QOL with 1-month Pediatric Tracheostomy Health Status Instrument (PTHSI) scores, and assessed complications with 6-month Medical Complications Associated with Pediatric Tracheostomy (MCAT) scores. RESULTS: Following implementation of the FCCC program, average LOS decreased from 30.5 days (range 17-39) to 16.6 days (range 9-23). The largest process improvement (cost reduction of 61%) occurred in the discharge-planning phase. The overall cost per care cycle was reduced by 36%. A large clinically meaningful benefit was demonstrated for PTHSI (effect size 0.80) as well as MCAT scores (effect size 9.35). CONCLUSIONS: We demonstrated the higher outcomes, including reductions in caregiver burden and complication rates, and the lower costs associated with implementation of the FCCC program for neonates undergoing tracheostomy.

Social support of families with tracheostomized children.

OBJECTIVE: To understand the social support of families with tracheostomized children. METHOD: Qualitative study using the Model of Dimensions of Social Support together with the Family System-Illness model as theoretical frameworks, based on the hybrid model of thematic analysis. Nine families with tracheostomized children were interviewed in an outpatient pediatric otorhinolaryngology department of a public hospital in the inner state of São Paulo. RESULTS: The experience of social support to each phase of the family experience was presented in three themes: "Knowing the need for a tracheostomy", "Performing a tracheostomy" and "Living with a tracheostomy". FINAL CONSIDERATIONS: Understanding how the experience of social support occurs can support assessment and intervention strategies, aiming to meet the demands of the family at each phase of its trajectory, collaborating for a continuous and integral nursing care.

Children's and adolescents' experiences of living with respiratory assistance: A systematic review of qualitative studies.

OBJECTIVES: To date, no review has focused exclusively on the child's reported experience of living with respiratory assistance. The objective of this study was to review empirical studies exploring children's experiences and perceptions of living with respiratory assistance. METHODS: Literature searches (1980-2017) of databases (PubMed, Web of Science, PsycINFO and CINAHL) resulted in 1,750 references. Studies were included if they used qualitative methods to explore children's (under 18 years) experiences of living with respiratory assistance, such as tracheostomies and/or those who were ventilator dependent. Studies that focused only on parents, carers or other family member's perspectives, included only adults, used only quantitative methods or were not published in the English language were excluded. Reference lists of relevant studies were reviewed. Each study meeting criteria was reviewed and assessed and key themes were extracted and grouped. RESULTS: Seven studies were included in this review. Synthesis of the data identified four main themes: children's understanding of respiratory assistance, identity, social experiences and service delivery. Most children recognised the important function of respiratory assistance on their physical health. They spoke of positive social experiences and some of the challenges they had experienced. Children discussed their experiences of healthcare providers in terms of what was helpful to them and provided suggestions, based on their experience, for future service provision. CONCLUSION: This review identified the valuable contribution children's perspectives make to the growing evidence-base in this area. Further in-depth explorations are needed to provide greater understanding about children's experiences of living with respiratory assistance. Research exploring the journey of a young person with respiratory assistance is important in developing knowledge and service provision in this field.

Quality of life in paediatric tracheostomy patients and their caregivers - A cross-sectional study.

OBJECTIVES: (1) To better outline quality of life outcomes in paediatric tracheostomy patients and their caregivers. (2) To establish whether quality of life outcomes for children are associated with those of their caregivers. (3) To establish whether quality of life outcomes were associated with the demographic and clinical variables of age, duration of time with a tracheostomy, number of comorbidities, and ventilator dependence. METHODS: Cross-sectional methodology was applied to gather quantitative data on quality of life outcomes, through PedsQL written questionnaires. These questionnaires covered social, emotional, physical and role/cognitive functioning. Caregivers also provided information on communication, worries, daily activities and family relationships. All children with a tracheostomy in situ, or recently decannulated, attending Sheffield Children's Hospital during the study period were eligible for inclusion. RESULTS: 25 families wished to participate, with patients ranging from 0.5 to 16.5 years (median 6.25). Both patients and caregivers attained lower scores than many other chronic diseases studied. Mean patient HRQoL was 56.2, with a physical health score of 52.4, psychosocial health score of 61.7. Caregiver HRQoL was 63.8, family functioning score was 68.1 and total family impact score was 61.6. Relative deficits were seen in caregiver social functioning (54.9), communication (56.3), worries (49.1) and daily activities (48.9), whilst role/cognitive functioning (73.8) and family relationships (79.6) subsections produced higher scores. Child psychosocial health showed moderate positive correlation (r = 0.492, p = 0.015) with both caregiver HRQoL and total family impact score. No correlation was identified between quality of life outcomes and demographic or clinical variables. CONCLUSIONS: Disease burden appears to be particularly high for children and families with tracheostomies, especially when compared to other serious childhood disease. Lack of time and energy to complete daily activities, social isolation, worries, as well as difficulty communicating and perceived lack of understanding of their child's health were instrumental in reduced quality of life of caregivers. Anxiety about the future affected the majority of caregivers. This psychosocial impact may be lost in the busyness of delivery of medical care. We recommend provision of psychosocial support for these families as is now also recommended in other chronic childhood illness.

Long-term functional and psychological recovery in a population of acute respiratory distress syndrome patients treated with VV-ECMO and in their caregivers.

BACKGROUND: Acute respiratory distress syndrome (ARDS) survivors are affected with long-term physical/mental impairments, with improvements limited mostly to the first year after intensive care (ICU) discharge. Furthermore, caregivers of ICU patients exhibit psychological problems after family-member recovery. We evaluated the long-term physical and mental recovery of ARDS survivors treated with veno-venous extracorporeal membrane oxygenation (VV-ECMO), and the long-term psychological impact on their caregivers. METHODS: Single-center prospective evaluation of a retrospective cohort of 75 ARDS patients treated with VV-ECMO during a seven-year period (25.10.2009-11.08.2016). Primary outcomes were the 36-Item Short-Form Health-Survey (SF-36, patients only), and risks of depression, anxiety or post-traumatic stress disorder (PTSD), both for patients and their caregivers. We investigated correlations between outcomes and population characteristics. RESULTS: Of 50 ICU-survivors, seven died later and five were not contactable. Among 38 living patients, 33 participated (87%, 31 with their caregiver) with 2.7 years of median follow-up. Physical and mental SF-36 component scores were 42 (inter-quartile range, IQR:22) and 52 (IQR:18.5), respectively. The worst domains of the SF-36 were physical-role limitations (25, IQR:100) and general-health perception (56, IQR:42.5). Psychological tests highlighted high risk of depression (39-42%, patients; 39-52%, caregivers), anxiety (42%, patients; 39%, caregivers), and PTSD (47%, patients; 61%, caregivers). Patient depression or anxiety scores were correlated to age and to the outcome reported by caregivers. CONCLUSIONS: At almost three-year follow-up, ARDS survivors treated with VV-ECMO showed reduced health-related quality-of-life and high risk of psychological impairment, in particular PTSD. Caregivers of this population were at high psychological risk as well.

Development and Pilot Testing of a Simulation to Study How Physicians Facilitate Surrogate Decision Making Based on Critically Ill Patients' Values and Preferences.

CONTEXT: There are no evidence-based programs to train physicians to facilitate shared decision making based on incapacitated intensive care unit patients' values and preferences. OBJECTIVES: The objective of this study was to develop a high-fidelity simulation to fill this gap. METHODS: Case development involved six steps: 1) drafting a case about an elderly patient receiving prolonged mechanical ventilation; 2) engaging an expert advisory board to optimize case content; 3) revising the case based on advisory board input; 4) training actors to portray the case patient's daughter; 5) obtaining physician feedback on the simulation; and 6) revising the case based on their feedback. We conducted a cross-sectional pilot study with 50 physicians to assess feasibility and acceptability, defined a priori as an enrollment rate >40 physicians/year, study procedures <75 minutes/participant, >95% actor adherence to standardization rules, and high physician ratings of realism and acceptability. RESULTS: Advisory panel feedback yielded two modifications: 1) refocusing the case on decision making about tracheostomy and percutaneous gastrostomy and 2) making the patient's values more authentic. Physician feedback yielded two additional modifications: 1) reducing how readily the actor divulged the patient's values and 2) making her more emotional. All 50 physicians enrolled in the pilot study over 11 months completed study procedures in <75 minutes. Actor adherence to standardization rules was 95.8%. Physicians' mean ratings of realism and acceptability were 8.4 and 9.1, respectively, on a 10-point scale. CONCLUSION: Simulation is feasible, is acceptable, and can be adequately standardized to study physicians' skills for facilitating surrogate decision making based on an incapacitated intensive care unit patient's values and preferences.

A Descriptive Qualitative Study of Home Care Experiences in Parents of Children with Tracheostomies.

PURPOSE: The number of pediatric patients who require a long-term tracheal tube at home is gradually increasing. Studies have demonstrated that the parents of these children report high levels of stress, anxiety and other negative emotions as early as shortly after discharge from the hospital. The purpose of this study is to describe the home care experiences of parents of children with tracheostomies during the transition from hospital to home in China to more effectively address their needs. DESIGN AND METHODS: This study used a qualitative descriptive design and face-to-face interviews with semi-structured questions to learn about the home care experiences of parents whose children had undergone a tracheostomy. RESULTS: Thirteen parents were recruited from the otorhinolaryngology outpatient ward of Xinhua Hospital in Shanghai, China. These parents described three categories of home care experiences: "direct care overload," "psychological overload," and "personal growth." Subcategories included parental "role change," "from helplessness to skillfulness," "lack of professional support," "anxiety and depression," and "social isolation." They also reported personal growth, which was mainly reflected by "changing their perspectives" and "developing potential." CONCLUSION: Although the findings of this study indicate that the physical and psychological overload reported by parents of children with tracheostomies during home care is inevitable, a better understanding of parents' caring experiences among professionals may facilitate clinical practice and promote continued community nursing care in China. PRACTICE IMPLICATIONS: Parents hope to receive systematic education during hospitalization, including web-based video education for skills training after discharge. In addition, parents desire public recognition so that they can participate in normal family and community activities.

Social support of families with tracheostomized children / Apoyo social de familias de niños traqueostomizados / Apoio social de famílias de crianças traqueostomizadas

ABSTRACT Objective: To understand the social support of families with tracheostomized children. Method: Qualitative study using the Model of Dimensions of Social Support together with the Family System-Illness model as theoretical frameworks, based on the hybrid model of thematic analysis. Nine families with tracheostomized children were interviewed in an outpatient pediatric otorhinolaryngology department of a public hospital in the inner state of São Paulo. Results: The experience of social support to each phase of the family experience was presented in three themes: "Knowing the need for a tracheostomy", "Performing a tracheostomy" and "Living with a tracheostomy". Final considerations: Understanding how the experience of social support occurs can support assessment and intervention strategies, aiming to meet the demands of the family at each phase of its trajectory, collaborating for a continuous and integral nursing care.

RESUMEN Objetivo: Entender el apoyo social de las familias con niños traqueostomizados. Método: Estudio cualitativo en que se utilizó como marco teórico el modelo de apoyo social y sus dimensiones y el modelo sistema familiar-enfermedad, y en el análisis se utilizó el modelo híbrido de análisis temático. Se entrevistó a nueve familias con niños traqueostomizados en seguimiento en el Servicio Ambulatorio de Otorrinolaringología Pediátrica de un hospital público del interior del estado de São Paulo. Resultados: La experiencia de apoyo social específico a cada fase de la experiencia de la familia ocurre de tres maneras: "Saber de la necesidad de la traqueostomía", "Realizar la traqueotomía" y "Convivir con la traqueotomía". Consideraciones finales: El entendimiento sobre cómo ocurre la experiencia del apoyo social puede permitir que se establezcan estrategias de evaluación e intervención, para atender las demandas de la familia en cada fase de su trayectoria y colaborar con una asistencia de enfermería continua e integral.

RESUMO Objetivo: compreender o apoio social de famílias de crianças traqueostomizadas. Método: estudo qualitativo que utilizou como referenciais teóricos o modelo de Apoio Social e suas Dimensões e o modelo Sistema Familiar-Doença, e cuja análise foi pautada pelo modelo Híbrido de Análise Temática. Foram entrevistadas nove famílias de crianças traqueostomizadas em acompanhamento no serviço ambulatorial de otorrinolaringologia pediátrica de um hospital público do interior do estado de São Paulo. Resultados: a experiência de apoio social peculiar a cada fase da experiência da família foi apresentada em três temas: "Saber da necessidade de traqueostomia" "Realizar a traqueostomia" e "Conviver com a traqueostomia". Considerações Finais: compreender como se dá a experiência do apoio social pode subsidiar estratégias de avaliação e intervenção, visando atender às demandas da família em cada fase de sua trajetória, colaborando para uma assistência de Enfermagem contínua e integral.

Risk analysis for tracheostomy dependency in curatively treated laryngeal cancer with organ preservation.

BACKGROUND: A tracheostomy has an enormous negative impact on the patient's quality of life. The purpose of this study is to describe risk factors for permanent tracheostomies in patients undergoing curative organ-preserving treatment of laryngeal cancer. METHODS: The charts of all patients with laryngeal cancer diagnosed at our tertiary referral center were reviewed. Cases receiving a tracheostomy before, during, or after primary organ-preserving treatment were eligible. RESULTS: A total of 87 patients who underwent tracheostomies were enrolled in the present study. During follow-up, 48 patients (55%) required a permanent tracheostomy, whereas 39 patients (45%) were decannulated. Multivariate analysis revealed primary radiotherapy (RT; odds ratio [OR] 12.857; P < .001) and recurrence (OR 25.84; P < .001) as independent factors of permanent tracheostomy. CONCLUSION: This study identifies primary curative RT and tumor relapse as independent risk factors of permanent tracheostomy dependency in patients with laryngeal cancer undergoing a tracheostomy during or after primary curative organ-preserving treatment.

Quality of life improves for tracheostomy patients with return of voice: A mixed methods evaluation of the patient experience across the care continuum.

OBJECTIVES: A tracheostomy tube can profoundly impact ability to communicate. The impact of this on patients' self-esteem and quality of life in the care continuum from the intensive care unit to after decannulation has not been reported. Therefore, the aim was to investigate the patient-reported experience regarding change in communication function, communication-related self-esteem and quality of life. RESEARCH DESIGN: A mixed methods approach was utilised. Quantitative data were obtained using validated measures of self-esteem related to communication-related quality of life and general health. Data were measured before return of voice, within 48 hours of voice return and six months after tracheostomy decannulation. Qualitative data were collected through structured interviews six months after tracheostomy. RESULTS: Seventeen participants completed the study. Four themes emerged from the interviews: It's hard communicating without a voice; What is happening to me?; A storm of dark emotions and More than a response…it's participating and recovering. Significant positive change occurred in six items of self-esteem related to communication from baseline to return of voice. Overall, positive changes in quality of life scores were observed. CONCLUSIONS: Voice loss with tracheostomy significantly affected participants' abilities to effectively communicate their care and comfort needs. Restoration of voice occurred in conjunction with patient-reported improved mood, outlook and sense of recovery.

The Role of the Medical Social Worker in a Pediatric Aero-Digestive Program.

Families experience many psycho-social challenges when caring for a child with a tracheostomy in the home. The support of a Medical Social Worker in a Pediatric Aero-digestive Program is vitally important to help families navigate the multiple systems required to help manage the needs of medically complex child. The Medical Social Worker should strive to partner with families to provide resources and coordinate care to enhance coping and improve overall patient care and well-being.

A Systematic Review of Patient and Caregiver Experiences with a Tracheostomy.

BACKGROUND: A tracheostomy is a surgically created opening through the anterior neck tissues and the trachea, into which a tube is inserted. Despite its influence on basic human needs such as respiration, communication and nutrition, little is known about the impact of tracheostomy on patients and their caregivers or what could be done to enable better care and quality of life (QoL) for these individuals. OBJECTIVE: The aim of this review was to better understand the current knowledge related to the experience and QoL of adults living with a tracheostomy and their caregivers so as to be able to improve these experiences. METHOD: A systematic review of the English-language, peer-reviewed literature was conducted in PubMed, Scopus, PsychINFO, Google Scholar, and CINAHL databases. Articles were eligible if they included adult patient or lay caregiver-reported experiences of tracheostomy. RESULTS: Overall, 1080 articles were identified and 17 eligible for inclusion. Fourteen articles reported on experiences of tracheostomy patients, while three focused on those of their caregivers. Studies were conducted in the home setting (n = 5), on a hospital ward (n = 4), in an intensive care unit (n = 3), in an outpatient clinic (n = 3), in a rehab facility (n = 1), and online (n = 1). Patients and their caregivers reported a range of mostly negative experiences related to the care, support, and management of a tracheostomy, speech and communication, wellbeing and QoL, disfigurement and body image, and stigma and social withdrawal. CONCLUSION: Few studies have published data on the patient and caregiver experiences with tracheostomy, especially in the community setting. There is a need to better understand these experiences in order to be able to formulate strategies and provide resources to improve the quality of care and overall QoL of patients with a tracheostomy and their caregivers in-hospital and in the community.