Problem behaviours, caregiver mental health symptoms and health service use in Australian children with cystic fibrosis: a prospective cohort study

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Background: Cystic fibrosis (CF) is an inherited, recessive condition, primarily affecting the respiratory and digestive systems. The current median life expectancy for adults with CF is approximately 37 years. Children with CF endure an intensive daily treatment regimen including dietary requirements, pancreatic enzyme replacements, vitamin supplementation, regular antibiotics, and airway clearance, in order to maintain their health status and reduce CF symptoms. The treatment regimen is often delivered by the primary caregiver. Caregivers can encounter problems in any of these areas in addition to other behaviour problems that are not specific to CF but nonetheless common in children. This thesis follows up a cohort of 117 caregivers of children with CF, initially recruited in 2007 from three CF clinics in the states of Victoria and New South Wales (NSW), Australia. Caregivers completed a survey about child problem behaviours and their own mental health. The baseline survey indicated that child moderate/severe sleep problems and eating/mealtime problem behaviours were more common than in healthy children. Physiotherapy adherence was a problem for 50.4% of the sample and symptoms of caregiver mental health problems were two to three times more common than in caregivers of healthy children. However, the natural history of these child problem behaviours and caregiver mental health symptoms remains unknown, as do the predictors of persistent child problem behaviours, and the use of health services by caregivers of children with CF. The aims of this study were therefore to: (1) describe the natural history of child problem behaviours and caregiver mental health symptoms over time; (2) identify caregiver and child health factors associated with child problem behaviours three years on and (3) document caregiver use of health services for their child and/or their own wellbeing. Method: The 117 caregivers who completed the baseline survey were invited to participate in the three year follow up. One child was excluded at follow up and 102 of the remaining 116 (88%) participated. At follow up children were aged three to eight years (M = 5.5, SD = 1.7). Caregivers provided consent for the child’s respiratory physician to supply the child’s most recent height, weight and lung function measurements. Caregivers completed questionnaires which repeated baseline measures. Several new measures were also included at follow up (i.e. caregiver coping and measures of child health status). Results: The proportions of child sleep, eating/mealtime and internalising problem behaviours at follow up were two to three times higher than community proportions. The prevalence of caregiver mental health symptoms also remained two to three times higher than community data. 71/102 (70%) of children experienced at least one persistent problem behaviour, with persistent physiotherapy and eating/mealtime problems being the most common. Caregiver mental health difficulties at baseline predicted persistent child moderate/severe sleep problems (adjusted OR 6.5, 95% CI 1.2 to 36.2, p = 0.03) and persistent poor adherence to the physiotherapy regimen (adjusted OR 3.5, 95% CI 1.3 to 9.2, p=.01). Whilst 47/98 caregivers (48%) reported no mental health symptoms at either time point, 25/98 (25%) reported persistent mental health symptoms. Children of caregivers with persistent symptoms of depression were six times more likely to experience moderate/severe sleep problems (adjusted OR = 6.2, 95% CI 1.5 to 25.8, p = .01) and four times more likely to experience internalising problem behaviours (adjusted OR = 4.3, 95% CI 1.1 to16.9, p = .04) at follow up. Children of caregivers with persistent stress symptoms were four times more likely to experience inappropriate eating/mealtime behaviours at follow up (adjusted OR = 4.1, 95% CI 1.1 to 14.9, p = .03). The child problem behaviours were generally not associated with child illness severity. Caregivers tended to seek help for child problems which reflected more ‘medical’ issues (i.e. eating (62/102, 61%), and physiotherapy difficulties 46/101 (46%)) but less so for behaviour, emotional or sleep problems. To address their own health/wellbeing 45/102 (44.1%) caregivers sought help from a health care professional, with General Practitioners (20/45; 44.4%) and Psychologists (16/45; 35.6%) being the most common sources of help. Conclusions: Child problem behaviours are common in children with CF, persist over time and are often predicted by elevated parent mental health symptoms. Caregiver mental health symptoms are also common and persist for one quarter of the caregiver population. Routine surveillance for, and management of, child problem behaviours and caregiver mental health symptoms is urgently required. Future studies assessing the feasibility and efficacy of caregiver interventions addressing both child problem behaviour and caregiver mental health are recommended.