Impacto no cotidiano de cuidadores de crianças com disfagia orofaríngea

Abstract

Dysphagia in the pediatric population can have a detrimental effect on food intake, growth and development. In addition, negative psychological and social consequences can affect parents and family members, as the demand for care, difficulties, concerns and responsibilities can lead the caregiver to overload, isolation, fatigue and stress. Objectives: To verify the impact on the daily life of the dysphagia caregiver, through the use of the instruments Pediatric Quality of Life Inventory™ - Family Impact Module (PedsQL™ - FIM), and the Feeding/Swallowing Impact Survey (FS-IS). Method: Descriptive observational study, in which all caregivers of infants and children with the diagnosis of oropharyngeal dysphagia were invited to participate, during hospitalization or in speech therapy, from May 2022 to September 2022, at the Hospital of Children and Maternity and at the Reikilibre rehabilitation clinic – São José do Rio Preto. Results: 43 caregivers participated in the study, with a mean age of 35.6 years and 93% female. The children's mean age was 3.85 years and a median of 2.0 years; the minimum age was 22 days (0.07 years) and the maximum was 14 years. Severe dysphagia was the predominant diagnosis of dysphagia, in 29 (67.4%) cases. 74.4% received exclusive alternative feeding form. In the application of the PedsQL™ - FIM, it was observed that the average values remained between 50 and 60 points, showing the impact suffered by caregivers. The most affected domain was “Worry”, followed by “Daily activities” and “Emotional aspect”. In the application of the FS-IS, it was possible to observe that the most affected domains were “Daily activities”, “Concern”, followed by “Difficulties in eating”. There was a strong negative correlation between the FS-IS total score and the PedsQL™ - FIM total score, as well as with the HRQOL and Family Functioning subscales. The three FS-IS subscales also correlated negatively with the total PedsQL™ - FIM score and its subscales. Therefore, the more the impact on caregivers' daily lives, assessed by FS-IS, the lower the quality of life assessed by PedsQL™ - FIM. Conclusions: It was possible to conclude that caregivers of children with oropharyngeal dysphagia have negative impacts in the family environment, in daily activities and with concerns.