"100 Things I Wish Someone Would Have Told Me": Everyday Challenges Parents Face While Caring for Their Children With a Tracheostomy.

Equitable access to appropriate care, emergency department services, and in-home support aids are needed to minimize the occurrences of adverse events that have a significant impact on families. However, many families of children with medical complexity (CMC) lack consistent care due to issues of health inequity. We conducted 11 qualitative interviews with primary caregivers who were asked about their experiences of providing care to children who have a tracheostomy and are supported by multiple life-saving machines at home. Guided by ecological systems theory, we identified three themes that contextualize the lived experiences of the participants who expressed needs that arose from poor interactions within the mesosystem. Findings convey participant frustrations that result from insufficient support, ineffective training, and inadequate healthcare coverage. Although each theme is organized systematically to emphasize specific concerns within the mesosystem, together these themes emphasize the inextricable relationship between daily needs with systemic barriers to care. We provide a discussion of these needs with a broader context that also impacts the perceived quality of care among families managing the needs of their children who are supported by life-saving technology. By addressing existing challenges and identifying opportunities for improvement within the healthcare system, we seek to contribute to the collective effort of advocating for ethical systemic change on behalf of CMC and their families.

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.

[Satisfaction of patients with tracheostomal epithesis]. / Die Tracheostomaepithese - eine Evaluation der Patientenzufriedenheit.

BACKGROUND: The utilization of craniofacial prosthesis has proven to be very successful for craniofacial defects. However, there is a lack of knowledge about the value of an epithesis for voice rehabilitation in patients with tracheostomy. The aim of this study was to describe application of the tracheostomy epithesis and to present a systematic analysis of the functional results of this prosthetic technique. MATERIALS AND METHODS: This retrospective analysis included 48 patients on follow-up being treated in three different centers after laryngectomy and/or tracheostomy between 2008 and 2014. Subjects were given a questionnaire with items such as speech quality, quality of life, free hand speech ability, respiratory quality and sufficient tracheostomal sealing comparing values before and after application of an individually custom-made tracheostomy epithesis. Twenty-eight answered the questionnaire and could be reported. RESULTS: Twenty-eight of 48 patients were consistently being included in follow-up. The statistical analysis revealed a significant improvement of tracheostoma occlusion (p < 0.05) and improvement in free hand speech ability (p < 0.05). A leakage of air during voice production could be prevented in 59.3% after application of an epithesis. Quality of life correlated directly with successful utilization of an epithesis. CONCLUSION: In the literature, different industrialized products are described to realize occlusion of the tracheostoma for sufficient speech production without using the hands. In numerous cases commercial solutions fail and the patients need individual modifications. Our study first describes the evaluation of custom-made tracheostomal epithesis. From our observed results we advocate the individual tracheostomal epithesis as a durable solution for voice rehabilitation.

Care of patients with permanent tracheostomy.

The third article in our series on tracheostomy care discusses the care of patients with a permanent tracheostomy. While these patients make up a small proportion of all patients who have a tracheostomy inserted, they have complex needs. This means they require practitioners in both acute and community settings, who have time, support and competent tracheostomy-care skills, to achieve a successful discharge and ongoing management of their tracheostomy.

Development and validation of a quality-of-life questionnaire for mechanically ventilated ICU patients.

OBJECTIVE: To develop and validate a new instrument for measuring health-related quality of life in mechanically ventilated patients in the ICU. DESIGN: Expert panel consensus and a prospective longitudinal survey. SETTING: Urban, academic, tertiary care medical center. PATIENTS: One hundred fifteen awake, mechanically ventilated, ICU patients who either received a tracheostomy or remained endotracheally intubated. INTERVENTIONS: A new quality-of-life instrument was developed and validated by using pilot study data; informal interviews of patients, families, and nurses; expert panel consensus; and item analyses. The new instrument was used to measure quality of life at three time points (5 d, 10 d, and 15 d after intubation). MEASUREMENTS AND MAIN RESULTS: A new 12-item quality-of-life questionnaire for mechanically ventilated patients was developed. Patients' responses to the quality-of-life questionnaire revealed moderate-to-high correlations with EuroQol scores (r = -0.4 to -0.9) and the EuroQol Visual Analog Scale (r = 0.6-0.9) across the three times and a moderate correlation with the Sequential Organ Failure Assessment tool (r = 0.5) at 10 days after intubation. Cronbach α ranged from 0.80 to 0.94 across the three times. The quality-of-life questionnaire for mechanically ventilated patients was responsive to changes in treatment modalities (tracheostomy vs no tracheostomy and early vs late tracheostomy demarcated by 10 d of intubation). Exploratory factor analysis revealed that this instrument was unidimensional in nature. CONCLUSIONS: The new quality-of-life questionnaire for mechanically ventilated patients is valid and can reliably measure quality of life in mechanically ventilated ICU patients. It may provide clinicians with an accurate assessment of patients' quality of life and facilitate optimal decision making regarding patients' ICU plan of care.

Double ABCX model of stress and adaptation in the context of families that care for children with a tracheostomy at home: application of a theory.

Theories provide a roadmap for scientific inquiry, help organize knowledge, and establish the foundation for knowledge development. The Double ABCX Model of Family Stress and Adaptation is a middle-range theory developed in social science and widely used by researchers of various disciplines. This model encompasses the major variables of interest in this study, including stress, coping, duration of tracheostomy, and quality-of-life, and forms an excellent framework for this specific research study. The purpose of this article was to discuss relationships between various individual and environmental factors that can impact health and well-being in families. In addition, this article illustrates how the application of the model helps nurses and healthcare providers understand the significance of the family context on positive well-being and promote optimal caring practices to achieve a balance in the midst of illness and suffering.

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.

Tracheostomy Decision Making and Counseling: Comparing Providers' and Caregivers' Perspectives and Perceptions.

Background: The decision to place a tracheostomy in children is complex and involves factors beyond the medical procedure, including quality of life, values, and goals. Providers play an important role in counseling caregivers and guiding them through the decision-making process. There are no established guidelines for tracheostomy counseling, leading to variations in practice. Additionally, how caregivers receive information differs from how providers believe they deliver it. Although studies have explored caregivers' and providers' viewpoints, none have examined them concurrently. Background: The primary aim of this exploratory study is to investigate differences between providers' and caregivers' perceptions of tracheostomy counseling and their perspectives regarding the decision-making process. Design: Semi-structured interviews were conducted with both caregivers and providers for children being evaluated for a tracheostomy. Qualitative analysis was applied to the interview transcripts to identify emergent themes. Subsequently, a comparative analysis was performed to compare these themes between caregivers and healthcare providers. Results: A total of 33 interviews were conducted, involving 16 caregivers and 17 providers. Notably, caregivers provided personal descriptions of their children in 81% of cases, whereas only 35% of providers did so. Concerns and fears for the children were expressed by 69% of caregivers and 59% of providers. In contrast, 75% of caregivers discussed their hopes and dreams for their children, compared with only 29% of providers. When it came to priorities, 69% of caregivers emphasized growth and development, and 38% mentioned discharge home, as opposed to 29% and 47% among providers, respectively. Conclusion: In conclusion, our study highlights a disconnect between caregivers and healthcare providers regarding tracheostomy counseling. These differing perspectives underscore the need for improved communication and understanding between the two groups. Recognizing these differences can help providers tailor their counseling approaches to better align with the values and priorities of families when making decisions about tracheostomy.

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).

Permanent tracheostomy: its social impacts and their management in Ondo State, Southwest, Nigeria.

BACKGROUND: Upper respiratory tract obstruction resulting from bilateral recurrent laryngeal nerve damage is commonly managed with permanent tracheostomy in our environment. OBJECTIVE: To evaluate the social impacts of permanent tracheostomy and its management in Ondo State, Southwest Nigeria. MATERIALS AND METHODS: Four patients were managed with permanent tracheostomy due to bilateral laryngeal nerve paralysis following thyroidectomy. The observed complications are grouped as surgical/medical and social complications. RESULTS: Surgical/medical complications include excessive mucus production, 29 (43.2%), stoma infection 18 (26.8%), stoma polyp and soft tissue blockage of tube fenestrations were 10 (15%) each. The observed impacts on patients' social life include: Negative attitude of family members, difficulty with professional use of voice, problems of social integration and scarcity of tracheostomy tube with speaking valves. CONCLUSION: Management of social impacts of permanent tracheostomy is more difficult than other complications and family members must be involved in it.

[What a tracheostomy changes in a child with a neuromuscular disease]. / Les principaux changements apportés par la trachéotomie chez des enfants atteints de maladies neuromusculaires.

INTRODUCTION: The severe course of certain early onset neuromuscular disorders may lead to the indication of a tracheostomy for a child, a step that parents dread. Previous publications report that families in this situation face particular difficulties and need to develop new strategies of organization and adaptation in order to cope with the new context of life. OBJECTIVES: The aim of this study is identifying, through the mother's eye, what changes implies tracheostomy for the child and his family. METHOD: A qualitative study using semi strutured interviews was performed to the mothers of tracheostomized children affected with a severe neuromuscular disorder. RESULTS: The study revealed four main consequences: tracheostomy immediatly led to a feeling of security for the mother; the need of ventilation during the day increased the quotidian difficulties, in particular concerning social activities; tracheostomy enhanced social stigmatization; finally, tracheostomy requires that parents are specifically trained to be able to perform high level of paramedical care, what leads to a lack of autonomy and the complexity of burden for caregivers. CONCLUSION: Whenever respiratory insufficiency becomes very severe and there is not ventilatory autonomy, tracheostomy, synonimous of life, has as main inconvenient the need of handling different machines, what becomes a significant difficulty in the daily life. In the transition before/ after the tracheotomy, the nurse plays a key role in the evolution of the health care function of parents.

Measurement of mothers' confidence to care for children assisted with tracheostomy technology in family homes.

The purpose of this research was to develop an objective, linear measure of mothers' confidence to care for children assisted with tracheostomy medical technology in their homes. Caregiver confidence is addressed in this research for three technologies, namely, a) trachesotomy, b) tracheostomy and ventilator, and c) BiPAP/CPAP although detailed measurement results are only reported for tracheostomy, and its co-calibration with tracheostomy and ventilator caregiving items. The sample consisted of 53 mothers responding to several caregiver questionnaires based on a caregiving task matrix after content and clinical validation. A major challenge was integrating this construct with overarching principles already established by Functional Caregiving, a multi-level humanistic caregiving model for children with intellectual disabilities. Empirical analyses included principal components analysis, and then linear transformation of Tracheostomy item ratings to an objective, equal-interval scale with a Rasch model. Results show caregiver separation on the Tracheostomy caregiving scale was 2.66 and reliability, .88. In general, co-calibration improved measurement properties without affecting mothers' caregiving confidence measures. Although sample size was small, measuring mothers' confidence to care for a child supported by complex medical technologies appears very promising.

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.

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.

[Smoking behaviour after laryngectomy]. / Rauchverhalten nach Laryngektomie.

BACKGROUND: Tobacco smoking is an important risk factor for laryngeal cancer. Aim of this study was to investigate the prevalence of smoking and to identify factors that can promote tobacco abstinence. PATIENTS AND METHODS: In a multi-centre cross-sectional study, 187 patients after laryngectomy were surveyed regarding their smoking behaviour. Instruments used were the questionnaire "Quality of Life after Laryngectomy" (Ackerstaff & Hilgers) and the "Questionnaire of Health Behaviour" ("Fragebogen zur Erfassung des Gesundheitsverhaltens", Dlugosch & Krieger). RESULTS: Life time prevalence of tobacco smoking was 89%, whereas current prevalence was only 6%. None of the laryngectomies believed tobacco consumption to be safe. 24% thought that their tumour was caused mainly by smoking, although the current prevalence of smoking was not related to that number. 74% of all ex-smokers had stopped smoking at the time of the laryngectomy. CONCLUSIONS: Only a small fraction of laryngectomized patients do smoke several years after the operation. Anti-tobacco interventions should therefore be focused on high risk persons, not on the entire patient population.

[Non-invasive and invasive mechanical ventilation for treatment of chronic respiratory failure. S2-Guidelines published by the German Medical Association of Pneumology and Ventilatory Support]. / Nichtinvasive und invasive Beatmung als Therapie der chronischen respiratorischen Insuffizienz. S2-Leitlinie herausgegeben von der Deutschen Gesellschaft für Pneumologie und Beatmungsmedizin e. V.

The field of mechanical ventilation is highly important in pulmonary medicine. The German Medical Association of Pneumology and Ventilatory Support ["Deutsche Gesellschaft für Pneumologie und Beatmungsmedizin e. V. (DGP)"] therefore has formulated these guidelines for home mechanical non-invasive and invasive ventilation. Non-invasive home mechanical ventilation can be administered using various facial masks; invasive home mechanical ventilation is performed via a tracheostomy. Home mechanical ventilation is widely and increasingly accepted as a treatment option for chronic ventilatory failure which most often occurs in COPD, restrictive lung diseases, obesity-hypoventilation syndrome and neuromuscular disorders. Essential for the initiation of home mechanical ventilation are the presence of symptoms of ventilatory failure and the detection of hypoventilation, most importantly hypercapnia. These guidelines comprise general indication criteria along with disease-specific criteria summarised by treatment algorithms. In addition, the management of bronchial secretions and care of paediatric patients are addressed. Home mechanical ventilation must be organised around a specialised respiratory care centre with expertise in patient selection, the initiation and the control of home mechanical ventilation. In this regard, the guidelines provide detailed information about technical requirements (equipment), control and settings of mechanical ventilation as well as organisation of patient care. A key requirement for home mechanical ventilation is the qualification of specialised home-care services, which is addressed in detail. Independent living and the quality of respiratory care are of highest priority in patients receiving home mechanical ventilation, since home mechanical ventilation can interfere with the integrity of a patient and often marks a life-sustaining therapy. Home mechanical ventilation has been shown to improve health-related quality of life of patients with chronic ventilatory failure. Long-term survival is improved in most patient groups, even though the long-term prognosis is often severely limited. For this reason, ethical issues regarding patient education, communication with ventilated patients at the end of life, living will, testament and medical care during the dying process are discussed.

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.

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.