An investigation on parenting stress of children with cystic fibrosis

Abstract

Background: The management of chronic diseases, particularly in children, requires an integrated physical and psychological approach to both sick children and their family. This is the case of Cystic Fibrosis (CF), a complex genetic chronic disease, where, a comprehensive evaluation of the emotional impact and an effective multidimensional approach are indicated. Aim: This study investigates on parenting stress in children and adolescents with CF and its determinants related to parents, children and the disease severity. Methods: The study involved 34.04% adult males and 65.96% adult females (range 21-55 years) and 47 children with CF, 54.35% males and 45.65% females (range 1-17 years). The data were obtained through a Parenting Stress Index -Short Form (PSI-SF) questionnaire. According to the PSI-SF scoring system, three types of stress were detected: a typical stress pattern (normal), a high stress pattern (increased) and a defensive response, which may be considered as a high stress feature in children which requires monitoring and clinical evaluation. Results: This study shows a significant presence of stress in females (60.23%), of subject married (84.62%), unemployed (69.23%) and with education level such as "middle School" (61.54%). Concerning children of parents with high stress, it resulted most frequent children with one sibling (53.85%). Finally, by univariate analysis, it resulted a significant positive correlation between parenting stress and disease degree of children. Instead by multivariate analysis, we found that the variables: Number of siblings and Birth order were a significant positive and negative predictor of parenting stress respectively. Conclusion: An increased stress level was detected in less than one third of parents of subjects with CF. These data may be related to the psychological support which is part of the routine management of CF care team. However, as children's features seem to act as a determinant of stress more than parental ones, the parental-child dysfunction should be the target for further integrated interventions.

The Role of Telehealth Services in Children with Cystic Fibrosis During Coronavirus Disease 2019 Outbreak

“…24 As the presence of an accompanying chronic illness that primarily affects the immune and respiratory systems would likely increase the anxiety level to a greater degree in the caregivers of healthy children, this was an expected finding. 25 Malnutrition was reported to be an independent factor that negatively affects survival. 26 One of the aims of the present study was to determine the nutritional status of the CF patients via telehealth services and intervene as necessary.…”

Evaluation of Soft Skills among Italian Healthcare Rehabilitators: A Cross Sectional Study

“…In fact, healthcare professionals, must be able to manage their emotions in difficult situations involving both patients and parents. 5,6 Soft skills are fundamentally based on the following: 7,8 • Interpersonal skills: active listening, good relationships, being useful, conflict resolution and mediation, negotiation, persuasion and influencing skills, team-working, problem solving and decision-making. • Organizational skills: time management, the ability to complete activities multitask, the ability to achieve goals and follow guidelines.…”

“…In fact, healthcare professionals, must be able to manage their emotions in difficult situations involving both patientsand parents. 5 , 6 Soft skills are fundamentally based on the following: 7 , 8 …”

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“…Psychological symptoms in both individuals with CF and parent caregivers have been associated with decreased lung function, lower body mass index, worse adherence, worse health-related quality of life, more frequent hospitalizations, and increased healthcare costs [ 223 ]. Continisio et al [ 224 ] showed a significant presence of stress in females (60.23%), subjects married (84.62%), unemployed subjects (69.23%) and "middle School" education levels (61.54%). Authors also highlighted a positive correlation between clinical severity and total stress, i.e., an increase of abnormal stress was found in parents who were concerned because of severe course of the disease in their kids.…”