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1.
Artigo em Inglês | MEDLINE | ID: mdl-38632000

RESUMO

This article explores the landscape of dysphagia assessment in adults. Dysphagia, a complex condition affecting the lifespan and many health conditions, significantly compromises individuals' quality of life. Dysphagia is often underdiagnosed, emphasizing the need for comprehensive assessment methods to ensure timely and accurate intervention. It encompasses clinical history, physical examination, clinical and instrumental swallow evaluations. Procedures within each of these modalities are reviewed, highlighting strengths, limitations, and contribution toward a complete understanding of dysphagia, ultimately guiding effective intervention strategies for improved patient outcomes.

2.
J Texture Stud ; 55(2): e12823, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38613313

RESUMO

In 2017, the International Dysphagia Diet Standardisation Initiative (IDDSI) introduced the IDDSI flow test which enables patients, clinicians, caregivers, food service professionals and researchers to classify liquid thickness into five levels based on the volume of liquid remaining in a standard 10 mL slip tip syringe after 10 s of flow under gravity. Within a few months of publishing the IDDSI flow test instructions, several barriers emerged: (1) the preferred model of syringe (BD 303134) was not equally accessible around the world, causing some users to perform flow tests with alternate models of syringe; (2) differences in syringe geometry across models led to variations in IDDSI flow test results; and (3) the need to use a second syringe for sample loading added complexity and cost to end users. To address these barriers, IDDSI designed the IDDSI funnel, a novel device, which combines the geometry of the BD 303134 syringe with a kitchen funnel to facilitate easy loading of liquid samples without need for a second syringe. In this report, we compare the IDDSI flow test results across two devices: syringe BD 303134 and IDDSI funnel. IDDSI level classifications were in complete agreement with the syringe reference test results in 67/73 (92%) of the test fluids and temperature conditions with mean difference of residual liquid across devices of 0.2 (2% full scale). These results demonstrate excellent correspondence between the two devices.


Assuntos
Transtornos de Deglutição , Serviços de Alimentação , Humanos , Fenômenos Físicos , Temperatura
4.
Dysphagia ; 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38558178

RESUMO

Dysphagia is one of the most common symptoms of stroke and can lead to other complications such as pneumonia, dehydration, and malnutrition. This retrospective cohort study evaluated the predictive value of a comprehensive swallowing assessment tool, the Mann Assessment of Swallowing Ability (MASA), in the acute phase of stroke for oral intake status at discharge. Among 1,133 consecutive patients with acute stroke, 512 patients whose swallowing function was assessed using the MASA within 24 h of admission were included. Data including demographic information, stroke severity, MASA, Oral Health Assessment Tool, body mass index, and serum albumin level were collected. Predictive factors for oral intake were analyzed using a multiple logistic regression model, and the receiver operating characteristic (ROC) curve analysis was used to determine the cutoff values of the MASA score for determining oral intake at discharge. Oral intake at discharge was established in 69.1% of the cohort (354/512). The multiple logistic regression analysis identified a higher MASA score, younger age, and higher serum albumin level as significant predictors of oral intake at discharge. The cutoff value of the MASA score for oral intake was 136.5 points, with an area under the ROC curve of 0.87. These findings suggest that the MASA is a valid tool for predicting oral intake in patients with dysphagia during the acute phase of stroke.

5.
J Oral Rehabil ; 2024 Apr 03.
Artigo em Inglês | MEDLINE | ID: mdl-38570928

RESUMO

BACKGROUND: Upper oesophageal sphincter (UES) serves as an important anatomical and functional landmark during swallowing. However, the precise UES location before and during swallowing has not been well established. OBJECTIVE: This study aimed to determine upper oesophageal sphincter (UES) location and displacement during swallowing accounting for sex, age, and height in healthy adults using 320-row area detector computed tomography (320-ADCT). METHODS: Ninety-four healthy adults (43 males; 22-90 years) underwent 320-ADCT scanning while swallowing one trial of 10 mL honey thick barium. UES location at bolus hold and at maximum displacement and vertical displacement during swallowing were identified using the coordinates and the section classification of vertebrae (VERT scale). The differences and correlations of UES location and distance in terms of sex, age, and height were analysed using Mann-Whitney U test and Spearman's correlation coefficient. RESULTS: UES locations at bolus hold and at maximum displacement were significantly lower and UES vertical displacement was significantly larger in males than in females (p < .001). UES location at bolus hold became lower with increasing age (r = -.312, p = .002), but the negative correlation was low at maximum displacement (r = -.230, p = .026), resulting in larger vertical distance with ageing. UES locations showed high negative correlation at bolus hold with height (r = -.715, p < .001), and showed moderate negative correlation at maximum displacement with height (r = -.555, p < .001), although this effect was unclear when analysed by sex. CONCLUSION: Males showed lower UES location and larger displacement than females. The impact of age was evident with lower location before swallowing and larger displacement during swallowing. Differences observed by sex were not completely explained by using the VERT scale to adjust for height.

6.
J Child Health Care ; : 13674935241242824, 2024 Apr 09.
Artigo em Inglês | MEDLINE | ID: mdl-38590229

RESUMO

Increasing use of paediatric long-term ventilation (LTV) has been reported around the world over the last two decades and it is anticipated that use of this medical intervention will continue to grow. Research has shown that children who use LTV have risk factors for feeding and swallowing difficulties which result in long-term reliance on non-oral feeding methods. This Patient and Public Involvement (PPI) activity explored experiences of parents of children with LTV on their children's feeding and swallowing journeys. Individual and group interviews with seven parents were conducted. Interview data was then analysed using content analysis. Families discussed a range of themes including impacts on their family, facilitators and barriers to feeding and swallowing journeys, speech and language therapy (SLT) support, their family's healthcare journey in relation to quality of life and future directions for research. This study highlighted potential key areas to explore when identifying ways to improve SLT care and research in feeding and swallowing for children who use LTV.

7.
Braz J Otorhinolaryngol ; 90(4): 101426, 2024 Mar 25.
Artigo em Inglês | MEDLINE | ID: mdl-38608636

RESUMO

OBJECTIVE: To classifying the degree of swallowing impairment in the elderly, comparing clinical and instrumental assessment. METHODS: This is a cross-sectional study with quantitative and qualitative analysis of clinical and instrumental assessment of 37 elderly, aged 60-82 years, of both genders without neurological, oncological or systemic diseases, participated in this study. All participants were submitted to clinical evaluation and their results compared through fiberoptic endoscopic evaluation of swallowing considering liquid, pudding and solid food consistencies. Data were analyzed descriptively and statistically using the analysis of variance test (two-way ANOVA) and Tukey's post hoc test (p <  0.05). RESULTS: In the clinical evaluation there was a higher occurrence of moderate swallowing impairment, followed by functional swallowing, while in fiberoptic endoscopic evaluation of swallowing the severity of the impairment was greater for moderate and mild degrees. There was no statistical difference between the clinical and instrumental evaluation methods. However, there was a significant interaction between the variables, with a difference for liquid consistency in the instrumental evaluation method. CONCLUSION: Healthy elderly have different degree of swallowing impairment according to food consistency. The clinical assessment using a scale that considers the physiological changes of the elderly, presented results similar to those found in the instrumental examination.

8.
Artigo em Inglês | MEDLINE | ID: mdl-38642087

RESUMO

PURPOSE: This study aimed to assess swallowing and laryngeal function at long-term follow-up in patients treated for severe COVID-19 in the ICU. METHODS: Thirty-six patients with severe COVID-19 were prospectively examined with fiberendoscopic evaluation of swallowing (FEES) about 6 and 12 months after ICU discharge. Comparison with initial FEES examinations during the time in hospital was performed in 17 patients. Analysis of swallowing function and laryngeal features was performed from video recordings. Twenty-five participants responded to Eating Assessment Tool, Voice Handicap Index, and the Hospital Anxiety and Depression Scale at follow-up. RESULTS: Penetration to the laryngeal vestibule (PAS ≥ 3) was seen in 22% and silent aspiration (PAS = 8) in 11% of patients on at least one swallow at follow-up. Fourteen percent had obvious residue in the vallecula and/or pyriform sinuses after swallowing thick liquid or biscuits. Self-reported eating and swallowing difficulties were found in 40% of patients. Abnormal findings in the larynx were present in 53% at follow-up. Thirty-three percent had reduced or impaired vocal fold movement, of whom 22% had bilateral impaired abduction of the vocal folds. Possible anxiety and depression were found in 36% and 24% of responders, respectively. CONCLUSION: Although a majority of patients appear to regain normal swallowing function by 1 year after treatment for severe COVID-19, our results indicate that dysphagia, abnormal laryngeal function, and anxiety/depression may remain in a substantial proportion of patients. This suggests that swallowing and laryngeal function, and emotional symptoms, should be followed up systematically over time in this patient group.

9.
Artigo em Inglês | MEDLINE | ID: mdl-38581573

RESUMO

PURPOSE: Dysphagia is a prevalent symptom observed in acute stroke. Several bedside screening tests are employed for the early detection of dysphagia. Pulse oximetry emerges as a practical and supportive method to augment the existing techniques utilized during bedside swallowing assessments. Desaturation levels, as measured by pulse oximetry, are acknowledged as indicative of aspiration by certain screening tests. However, the predictive capability of pulse oximetry in determining aspiration remains a subject of controversy. The objective of this study was to compare aspiration and oxygen desaturation levels by time and aspiration severity in dysphagic patients compared to healthy controls. It also aimed to evaluate the accuracy of pulse oximetry by comparing it with VFSS findings in detecting aspiration in both liquid (IDDSI-0) and semi-solid (IDDSI-4) consistencies. MATERIALS AND METHODS: Eighty subjects (40 healthy and 40 acute stroke patients) participated. Patients suspected of dysphagia underwent videofluoroscopy as part of the stroke unit's routine procedure. Baseline SpO2 was measured before VFSS, and stabilized values were recorded. Sequential IDDSI-0 and IDDSI-4 barium tests were conducted with 5 ml boluses. Stabilized SPO2 values were recorded during swallowing and 3-min post-feeding. Patients with non-dysphagia received equal bolus monitoring. Changes in SPO2 during, before, and after swallowing were analyzed for each consistency in both groups. RESULTS: The study revealed a statistically significant difference in SPO2 between patients with dysphagia and controls for IDDSI-4 and IDSSI-0. In IDDSI-4, 20% of patients experienced SpO2 decrease compared to 2.5% in control group (p = 0.013). For IDDSI-0, 35% of patients showed SpO2 decrease, while none in the control group did (p = 0.0001). Aspiration rates were 2.5% in IDDSI-4 and 57.5% in IDDSI-0. In IDDSI-0, SpO2 decrease significantly correlated with aspiration (p = 0.0001). In IDDSI-4, 20.5% had SpO2 decrease without aspiration, and showing no significant difference (p = 0.613). Penetration-Aspiration Scale scores had no significant association with SpO2 decrease (p = 0.602). Pulse oximetry in IDDSI-4 had limited sensitivity (0%) and positive predictive value, (0%) while in IDDSI-0, it demonstrated acceptable sensitivity (60.9%) and specificity (100%) with good discrimination capability (AUC = 0.83). CONCLUSIONS: A decrease in SPO2 may indicate potential aspiration but is insufficient alone for detection. This study proposes pulse oximetry as a valuable complementary tool in assessing dysphagia but emphasizes that aspiration cannot be reliably predicted based solely on SpO2 decrease.

10.
Dysphagia ; 2024 Mar 22.
Artigo em Inglês | MEDLINE | ID: mdl-38517530

RESUMO

To review the assessment methods of dysphagia as a criterion for the decision-making process for Percutaneous Endoscopic Gastrostomy (PEG) placement in patients with Amyotrophic Lateral Sclerosis (ALS). Systematic review. A search was conducted in three databases (EMBASE, CINAHL, PUBMED) in December 2022 and updated in July 2023. Two reviewers independently screened, selected, and extracted data. Study quality was appraised using the Joanna Briggs Institute Critical Appraisal Tools. Systematic review registration number in the International Prospective Register of Systematic Reviews (PROSPERO): CRD42022385461. The searches identified 240 records. The 10 eligible studies included 2 case reports, 4 retrospective studies, 3 prospective studies, and 1 cohort observational study. Study quality was low, with most studies having moderate to high risk of bias. Dysphagia is a common criterion for decision-making. Dysphagia assessment is usually in the form of either self-reports, objective instrumental assessments, or both. Dysphagia is a common criterion for the decision-making process, yet is missing in clinical guidelines. Establishing the optimal means of dysphagia assessment is important for timely decision-making procedures, so that life-threatening consequences of dysphagia are minimized.

11.
Artigo em Inglês | MEDLINE | ID: mdl-38521722

RESUMO

Pediatric dysphagia is a common condition encountered in clinical practice. We review the physiology and development of swallow, presentation, epidemiology, and etiology of dysphagia. Additionally, comorbidities, associated conditions, and medical management of dysphagia are discussed.

12.
J Neuromuscul Dis ; 11(2): 473-483, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38457144

RESUMO

Background: The manifestation of bulbar symptoms, especially swallowing, is important for evaluating disease-modifying therapies for spinal muscular atrophy (SMA). Due to the lack of instruments, the topic is still underrepresented in research. Objective: This study aimed to develop a tool to monitor swallowing development in children aged 0 to 24 months with SMA. Methods: The method was guided by the COSMIN guidelines and followed a multi-stage Delphi process. The first step was a rapid review of swallowing outcomes in children with SMA younger than 24 months. In the second step, online group interviews with experts (n = 7) on dysphagia in infants were conducted, followed by an anonymous online survey among experts in infants with SMA (n = 19). A predefined consensus threshold for nominal scaled voting was set at≥75 % and for 5-point Likert scale voting at 1.25 of the interquartile range. The third step was the pilot test of the instrument, performed with three groups (healthy controls n = 8; pre-symptomatic n = 6, symptomatic n = 6). Results: Based on the multi-level interprofessional consensus, the DySMA comprises two parts (history and examination), ten categories, with 36 items. Implementation and scoring are clearly articulated and easy to implement. The pilot test showed that swallowing development could be recorded in all groups. Conclusion: The DySMA is well suited for monitoring swallowing development in pre-symptomatic and symptomatic treated infants with SMA. It can be performed in a time-efficient and interprofessional manner. The resulting score is comparable to results from other instruments measuring other domains, e.g., motor function.


Assuntos
Transtornos de Deglutição , Atrofia Muscular Espinal , Criança , Lactente , Humanos , Deglutição , Consenso , Transtornos de Deglutição/diagnóstico , Transtornos de Deglutição/etiologia , Inquéritos e Questionários
13.
Nutrition ; 122: 112385, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38428221

RESUMO

OBJECTIVE: The aim to examine the prevalence and prognosis of cachexia according to the Asian Working Group for Cachexia (AWGC) criteria in patients with sarcopenic dysphagia. METHODS: A retrospective cohort study was conducted with 271 patients diagnosed with sarcopenic dysphagia out of 467 patients enrolled in the Japanese sarcopenic dysphagia database. Cachexia was diagnosed by the AWGC criteria. The AWGC criteria includes chronic diseases, either or both weight loss (2% or more over 3-6 mo) or low BMI (<21 kg/m2), and at least one of the following: anorexia, decreased grip strength (<28 kg in men and <18 kg in women), or elevated C-reactive protein levels (>0.5 mg/dL). Outcomes were death, swallowing function as assessed by the Food Intake LEVEL Scale (FILS), and activities of daily living as assessed by the Barthel Index (BI) at follow-up. RESULTS: The mean age was 84 (±8) y; 152 (56%) were female, and 97 (36%) had cachexia. In univariate analysis, death was significantly more common in the cachexia group (15% versus 2%, P ≤ 0.001). Logistic regression analysis showed that cachexia was independently associated with death (odds ratio: 3.557, 95% confidence interval: 1.010, 12.529). No significant differences were found in the presence or absence of cachexia in the FILS (7 versus 8, P = 0.849) and BI (55 versus 52.5, P = 0.892). CONCLUSIONS: Cachexia was found in 36% of patients with sarcopenic dysphagia, and death was significantly higher in cachexia.


Assuntos
Transtornos de Deglutição , Sarcopenia , Masculino , Humanos , Feminino , Idoso de 80 Anos ou mais , Sarcopenia/complicações , Sarcopenia/diagnóstico , Sarcopenia/epidemiologia , Transtornos de Deglutição/etiologia , Transtornos de Deglutição/complicações , Atividades Cotidianas , Estudos Retrospectivos , Caquexia/diagnóstico , Caquexia/epidemiologia , Caquexia/etiologia , Prevalência , Prognóstico
14.
Clin Case Rep ; 12(3): e8660, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38487636

RESUMO

Dysphagia resulting from bulbous pemphigoid is a rare but significant manifestation. A 77-year-old with bullous pemphigoid with no neurological history presented with severe oropharyngeal dysphagia, attributable to underlying blistering and edema, as documented on a fiberoptic endoscopic swallow examination.

15.
Dysphagia ; 2024 Mar 11.
Artigo em Inglês | MEDLINE | ID: mdl-38466426

RESUMO

The suprahyoid muscles play an important role in protecting the airway by elevating both the hyoid bone and larynx superior-anteriorly during swallowing. However, providing systematic external resistance when performing exercises to improve suprahyoid muscle strength is practically difficult. This study attempted to confirm whether systematic resistance can be provided to the suprahyoid muscles using the Iowa Oral Performance Instrument (IOPI)-a representative tongue pressure measurement device. Thirty-one healthy adults participated in this study (20.6 ± 0.96 y, 19 females). The participants performed 16 exercise tasks using the IOPI three times each in random order (Anterior/posterior tongue × pressing/swallowing task × 40/60/80/100% maximum tongue pressure). Furthermore, the floor of the mouth (FOM) muscle activity during exercise was simultaneously measured using surface electromyography. During the pressing task, there were significant differences in FOM maximal muscle activity among the four exercise intensities for both the anterior and posterior oral tongue. For the swallowing task, a significant difference was found in FOM muscle activity among the four exercise intensities for the anterior tongue. For the posterior tongue, significant differences were identified among all conditions except for the comparison between 80% and 100% maximum tongue pressure. Significant correlations between the degree of tongue pressure and maximal FOM muscle activity were found in both the pressing and swallowing tasks at the anterior and posterior oral tongue. Overall, these results indicate that objective and systematic external resistance can be applied using the IOPI-a standard tongue pressure measurement device-during the program to improve suprahyoid muscle function.

16.
Dysphagia ; 2024 Mar 19.
Artigo em Inglês | MEDLINE | ID: mdl-38502346

RESUMO

Dysphagia or swallowing dysfunction is associated with reduced quality of life and poor long term outcomes. While standard dysphagia treatment focuses on improving swallowing function, it is not clear if people with dysphagia also have difficulties performing daily tasks. This study aimed to determine if individuals with dysphagia had difficulties with participating in daily tasks requiring physical function, as compared to those with no dysphagia. We conducted a secondary data analysis using the responses of 24,107 adults aged 18 years or older who completed the 2022 National Health Interview Survey. The independent variable was report of swallowing problem during the past 12 months, and the dependent variables were report of difficulty in physical function tasks (e.g., self-care, mobility, working, social participation). We utilized propensity score methods to balance demographic and clinical variables between groups, and examined if individuals with dysphagia had more difficulties with the physical function tasks. The propensity score methods balanced the demographic and clinical variables (absolute standardized differences < 0.1). People with dysphagia had significantly higher odds ratios (ranged from 1.23 to 1.70, all p < 0.05) of having difficulties in physical function tasks than those without dysphagia. The findings revealed an association between experiencing dysphagia and encountering difficulties in self-care, mobility, working, and social participation in the general adult population in the US. Results of our study indicate that during the course of rehabilitation, healthcare professionals should consider the potential impact of dysphagia symptoms on clients' ability to partake in independent activities in their community settings.

17.
Dysphagia ; 2024 Mar 19.
Artigo em Inglês | MEDLINE | ID: mdl-38503935

RESUMO

Feeding/swallowing and airway protection are complex functions, essential for survival, and continue to evolve throughout the lifetime. Medical and surgical advances across the globe have improved the long-term survival of medically complex children at the cost of increasing comorbidities, including dysfunctional swallowing (dysphagia). Dysphagia is prominent in children with histories of preterm birth, neurologic and neuromuscular diagnoses, developmental delays, and aerodigestive disorders; and is associated with medical, health, and neurodevelopmental problems; and long-term socioeconomic, caregiver, health system, and social burdens. Despite these survival and population trends, data on global prevalence of childhood dysphagia and associated burdens are limited, and practice variations are common. This article reviews current global population and resource-dependent influences on current trends for children with dysphagia, disparities in the availability and access to specialized multidisciplinary care, and potential impacts on burdens. A patient example will illustrate some questions to be considered and decision-making options in relation to age and development, availability and accessibility to resources, as well as diverse cultures and family values. Precise recognition of feeding/swallowing disorders and follow-up intervention are enhanced by awareness and knowledge of global disparities in resources. Initiatives are needed, which address geographic and economic barriers to providing optimal care to children with dysphagia.

18.
J Surg Case Rep ; 2024(3): rjae149, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38505334

RESUMO

This case study presents a female patient with progressive dysphagia for solids, heartburn, and obesity that proved refractory to clinical management. Imagenological diagnosis revealed esophageal stenosis and achalasia. Furthermore, metabolic syndrome was established. We proposed intervention through esophagogastric reconstruction due to stenosis, revision of cardiomyotomy and robotic gastric bypass revealing scar tissue and fibrosis on the anterior aspect of the stomach resulting from prior fundoplication surgery. The patient underwent esophagogastric reconstruction due to adhesion bands which conditioned partial angulation of the gastroesophageal junction, cardiomyotomy revision, anterior and posterior hiatal plasty, and Roux Y Gastric Bypass assisted by a robot without complications. The intervention resulted in significant improvement in postoperative symptoms. This case highlights the importance of considering the probability of mechanical obstruction due to postsurgical adhesions in the initial evaluation of recurrent and persistent dysphagia, with surgical reintervention being the ideal option for resolution.

19.
Australas J Ageing ; 2024 Mar 27.
Artigo em Inglês | MEDLINE | ID: mdl-38539043

RESUMO

OBJECTIVE: The development of a dysphagia screening test is an urgent issue in the field of frailty prevention among community-dwelling older people. The purpose of this study was to evaluate the screening performance of a 100-mL water swallowing test (WST). METHODS: The study employed a cross-sectional design. Participants were 304 (65 men and 239 women, mean age = 80 years) Japanese community-dwelling older adults aged over 65 years. We investigated swallowing disorder using the 10-item Eating Assessment Tool (EAT-10), and compared choking signs, swallowing time and number of swallows, and their combination in the 100-mL WST. We calculated the sensitivity and specificity of these indices. Receiver operating characteristic (ROC) curve analysis was used to determine the optimal cut-off value of swallowing time and number of swallows in the 100-mL WST based on the Youden Index among participants without choking signs. RESULTS: The sensitivity and specificity of choking signs in the 100-mL WST were 20% and 91%, respectively. The discriminating ability of swallowing time and number of swallows among participants without any choking signs was .76 and .72, respectively, in the area under the ROC curve. Diagnostic sensitivity and specificity to discriminate dysphagia from normal swallowing ability were 65% and 74% when the cut-off was >10 s based on maximisation of the Youden Index. The 100-mL WST performed best when the indices of choking signs and swallowing time were combined, with a sensitivity and specificity of 72% and 68%, respectively. CONCLUSIONS: The 100-mL WST would be an adequate screening tool when compared to the EAT-10.

20.
Cardiol Young ; : 1-6, 2024 Mar 07.
Artigo em Inglês | MEDLINE | ID: mdl-38450498

RESUMO

Dysphagia is common in children with CHDs, resulting in multiple stressors for their caregivers including having a child with a serious medical condition and coping with their child's feeding needs. However, relatively little is known about caregivers' perceptions and experiences of the burden of care and support needs for their child with a CHD and dysphagia in low-middle income contexts. This qualitative study investigated the burden of care and support needs identified by parents of children with CHDs and dysphagia in a single centre in South Africa. Semi-structured interviews took place in a tertiary hospital with seven mothers of children with CHDs and dysphagia, followed by content analysis. Participants described four main impacts of their child's condition, which included worry, the burden of caregiving, emotional responses, and acceptance and coping. The participants were well-supported by speech-language therapists and dieticians, but suggestions for additional support included support groups and using mobile messaging apps for communication with peers and professionals. The study has important implications for understanding challenges faced by caregivers of children with complex needs in low-middle income settings and will be useful to inform and improve holistic healthcare practice for families of children with CHDs and dysphagia.

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