Study of Burden Among Caregivers of Children with Cleft Lip and Palate

Abstract

The psychological and physical health of caregivers of children with cleft lip and palate can be strongly influenced by the child’s condition and behavior, and care required by the treatment. This study’s objective was to identify overload levels among these caregivers. A total of 100 caregivers, whose children were in the perioperative period of cheiloplasty and/or palatoplasty, were interviewed using the Scale Burden Interview. The data were analyzed quantitatively. Moderate and moderate severe burden levels were identified in 43% of the sample. The mothers of children aged around 12 months presented significantly higher overload. The results indicate that children in this developmental stage present greater care demand because they seek autonomy in locomotion, explore objects in their surrounding environment, and continually request communicative and affective-social interaction with their reference to greater attachment (the caregiver), which may have contributed to higher burden.

The Burden and Perceived Stress on Family Caregivers of Patients With Orofacial Cleft Deformities in The Perioperative Period of Cleft Repair

“…This study has demonstrated that the overall caregiver burden among family caregivers of cleft patients was mainly moderate with about 34.5% experiencing little or no burden, 40% experiencing mild to moderate burden, while 21.1% had experienced moderate to severe burden, and only 4.4% had experienced severe burden. A similar study earlier carried out in Brazil also reported a similar finding in which 57% of family caregivers did not show any evidence of burden while only 7% experienced severe burden (15). This similar finding may be due to the similarity in African and Brazilian family structure as well as similar supports received for cleft care from different agencies and organizations like smile train that support free cleft surgeries globally.…”

“…The minimum sample size of 80 was calculated using an appropriate statistical formula for descriptive health studies (n = Z 2 pq/d 2 ) with 7% of family caregivers having severe caregivers’ burden and nonresponders taken into consideration ( 15 ).…”

Parental care for infants with feeding tube: psychosocial repercussions

“…On the other hand, there are increasing existential transformations for the caregiver, which include the reframing of life based on a positive coping with changing the guidelines of their daily lives, emerging feelings of satisfaction and duty accomplished (25,30) .…”

“…This occurs when using the feeding tube, whether seeking the knowledge necessary for care or seeking resources or support from family members and the community. If necessary, they should waive or underestimate issues related to their social and physical well-being (30) .…”

Problemas de Salud Mental en Niños con Fisura Labiopalatina

“…Este aislamiento está vinculado a distintas razones, como la falta de redes de apoyo, una falta de conocimiento y entendimiento de la enfermedad de parte de los otros, y el no tener contacto con otros padres que viven experiencias similares. Es importante considerar que el cuidador principal del hijo afectado suele ser la madre, y que las tareas de cuidado que los hijos requieren suelen ser demandantes, contribuyendo a la sobrecarga (Razera, Trettene, Tabaquim, & Niquerito, 2017). Dentro de las tareas que se le atribuyen al cuidador se encuentran cuidados diarios, los turnos médicos de rutina, y las discusiones de preocupaciones y estrategias con los profesionales de salud (Pelentsov, Fielder, & Esterman, 20162).…”