Psychological status of mothers of children with cystic fibrosis and primary ciliary dyskinesia (original) (raw)
Related papers
Caregiver burden in children with cystic fibrosis and primary ciliary dyskinesia
Pediatric Pulmonology, 2019
Introduction: Caregiver burden impacts both the social and economic framework of society. Cystic fibrosis (CF) causes significant caregiver burden, but the current data is scarce. In the case of primary ciliary dyskinesia (PCD), even less is known. This study aims to compare the caregiver burden of the parents of patients with CF and PCD. Methods: Patients with CF and PCD between the ages of 6 to 13 and their parents were included. Patients' clinical information and parents' demographics were recorded. Caregiver burden was measured with Zarit Caregiver Burden Scale (ZCB), while the quality of life (QOL) was measured with CFQOL-revised (CFQOL-R) and PCD QOL questionnaire as the patients' age and diagnosis indicated. Results: A total of 63 patients, 44 with CF (69%) and 85 caregivers (35 mothers, 6 fathers, and 22 mother-father dyads) participated in the study. Caregiver burden was significantly higher in mothers of the CF group with a mean ZCB of 30.5 ± 10.7 when compared to the PCD group with a mean ZCB of 21.93 ± 8.26 (P = .006). This was similar in fathers with mean ZCB of 27.5 ± 9.21 in the CF group and 20.36 ± 7.43 in the PCD group (P = .03). In correlation analyses, mothers' caregiver burden moderately and inversely correlated with CFQOL-R subscales in the CF population. Conclusion: Caregiver burden is significantly higher in the CF population when compared to PCD. It is correlated with pulmonary functions and QOL in patients with CF.
An investigation on parenting stress of children with cystic fibrosis
Italian Journal of Pediatrics
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 stres...
International Journal of Behavioral Medicine, 2014
Background: In children with cystic fibrosis (CF) sleep, eating/mealtime, physiotherapy adherence and internalising problems are common. Caregivers also often report elevated depression, anxiety and stress symptoms. Purpose: To identify, through principal components analysis (PCA), coping strategies used by Australian caregivers of children with CF and to assess the relationship between the derived coping components, caregiver mental health symptoms and child treatment related and non-treatment related problem behaviours. Method: 102 caregivers of children aged three to eight years from three CF clinic sites in Australia, completed self-report questionnaires about their coping and mental health and reported on their child's sleep, eating/mealtime, treatment adherence and internalising and externalising behaviours. Results: Two caregiver coping components were derived from the PCA: labelled 'proactive' and 'avoidant' coping. 'Avoidant' coping correlated moderately with caregiver depression (0.52), anxiety (0.57) and stress (0.55). For each unit increase in caregiver use of avoidant coping strategies, the odds of frequent child eating/mealtime behaviour problems increased by 1.3 (adjusted 95% CI 1.0 to 1.6, p = .03) as did the odds of children experiencing borderline/clinical internalising behaviour problems (adjusted 95% CI 1.1 to 1.7, p = .01). Proactive coping strategies were not associated with reduced odds of any child problem behaviours. Conclusions: Avoidant coping strategies correlated with caregiver mental health and child problem behaviours. Intervening with caregiver coping may be a way to improve both caregiver mental health and child problem behaviours in preschool and early school age children with CF.
The Needs, Concerns and Coping of Mothers of Children with Cystic Fibrosis
Scandinavian Journal of Caring Sciences, 1989
The questionnaire CIC1:PQ for measuring needs, concerns and coping of parents of chronically ill children was mailed to 85 families with children with cystic fibrosis (CF). Some questions about the parents' experiences of the health care system were also included. Fifty-four per cent responded-in all cases but two the mothers. More than half of the mothers wanted help with or opportunities to discuss the state of health and the emotional development of the child and dietary issues. Many of them were concerned about the child's future. Shortage of time was another problem. The coping strategies used when having problems with the child were partly different from those used when problems arose with the spouse. Most mothers were satisfied with the hospital care and the CF paediatrician. They wanted further support from the physiotherapist and many of them missed a CF nurse. The project illuminated many areas for further investigation.
Factors associated with quality of life for cystic fibrosis family caregivers
Discover Mental Health
Cystic Fibrosis (CF) is a genetic and chronic disease affecting 32,100 people in the United States as of 2021, with a life expectancy of 56 years for people with CF (PwCF) born between 2018 and 2022. While there is extensive literature about cystic fibrosis, there are few studies examining the complexity and challenges experienced by family caregivers for PwCF. The aim of this study was to examine the Caregiver Quality of Life Cystic Fibrosis (CQOLCF) scale using data (N = 217) from two separate studies that used the scale to determine if its items represent multiple factors relevant to CF family caregiver QoL. Factor analysis was conducted on the Seven distinct factors were found with analysis of the CQOLCF. Factors were Existential Dread (12%), Burden (11%), Strain (7%), Support (7%), Positivity (6%), Finance (5%) and Guilt (3%). Study findings indicated it is important for healthcare providers and researchers who use the CQOLCF to be knowledgeable and aware of the multiple factor...
Open Journal of Nursing, 2015
The aim was to examine depression and anxiety among parents of children with Cystic Fibrosis and the association between the parents' symptoms and the child's quality of life as rated by the parents. Parents completed HADS (Hospital Anxiety and Depression Scale), and CES-D (Center of Epidemiologic Studies Depression Scale), and assessed the children's quality of life with CFQ-R (Cystic Fibrosis Questionnaire-Revised). Anxiety amongst the parents was higher than the general population (m = 6.55, SD = 3.54, p < 0.001). The level of depression does not differ from that of the general population. Mothers showed more anxiety symptoms than fathers (p < 0.001). Gender differences were not significant for depression symptoms. There is a strong association between the fathers' self-rated depression and their rating of their child's health. Both children and parents should be paid attention to in order to identify mental ill-health and take measures in good time.
Correlates of well-being in mothers of children and adolescents with cystic fibrosis
Child: Care, Health and Development, 1998
Fifty mothers and 44 well siblings of children and adolescents with cystic fibrosis (CF) participated in this study to identify correlates of maternal well-being. Participants completed postal questionnaires which assessed maternal wellbeing, problems experienced surrounding the illness and treatment and the nature of the sibling relationship. Due to the demanding nature of treatment and the fact that CF is both genetic and incurable at present we anticipate mothers of these children will experience higher levels of stress and consequently poorer well-being than the normal population. In addition, illness severity, problems with adherence to treatment, child communication, maternal support and the sibling relationship are expected to relate to maternal well-being. Mothers in this sample did not rate their well-being as any different to the normal population. Results suggest that mothers are likely to rate their own well-being as poor when they report more frequent problems surrounding the illness and treatment and well children rate their sibling relationship as having frequent disagreements and aggression. This study highlights factors that are related to maternal wellbeing in families where one child has CF. These mothers as a group do not appear to be experiencing more stress in their daily lives than the normal population but certain illness and family variables are related to their well-being when examining the mothers on certain dimensions.
Parental Response to Cystic Fibrosis: A Contextual Analysis of the Diagnosis Phase
Journal of Pediatric Psychology, 1992
A contextual framework guided the measurement of specific stressors encountered by parents of children recently diagnosed with cystic fibrosis (CF). Three variables were assessed within the context of the parenting role: illness-specific tasks, normal parenting tasks, and strains in family roles. These situationspecific stressors were contrasted with global measures of parenting stress in their ability to predict depression. Sixty-four parents (36 mothers, 28 fathers) of infants and toddlers recently diagnosed with CF completed a structured interview and standardized measures in the home. Parents reported elevations in both situation-specific and global parenting stress, and a greater number of depressive symptoms than a norm group. Mothers reported significantly greater strain in managing their caregiving role and higher levels of depression than fathers. Controlling for situation-specific parenting stress and marital satisfaction, regression analyses indicated that role strain related to CF was associated with greater depression in mothers, but not fathers. Furthermore, stressors measured contextually rather than globally accounted for substantially greater proportions of the variance in depression. The findings highlight the need to measure ongoing strains specific to the medical condition, and to assess rolerelated changes.