Assessing the impact of administering the 'Challenges of Living with Cystic Fibrosis' questionnaire on the self-efficacy of caregivers of children with cystic fibrosis

摘要

INTRODUCTION Cystic Fibrosis is a multi-organ, genetic disorder with the most pronounced effects observed in the lungs, pancreas and the gastrointestinal system. From a young age, patients suffer from chronic pulmonary infections, poor digestion and malabsorption of nutrients from the gut. As a result, patients have to perform numerous therapeutic tasks regularly to remain healthy. These treatments come at the expense of a considerable treatment burden and burden of care to the patient and family involved. METHODS The ‘Challenges of Living with Cystic Fibrosis Questionnaire’ (CLCF-Q) has been developed to measure the burden felt by caregivers of children with CF. The aim of this study was to investigate the effect of administering the CLCF-Q to caregivers during their child’s annual review on the carer’s self-efficacy. Self-efficacy was measured by the ‘Cystic Fibrosis Self-Efficacy Questionnaire’ (CFSE-Q). Participants were randomised into the intervention or control groups. Those in the intervention group completed the CLCF-Q during the annual review process and received feedback at a later date. All participants completed the CFSE-Q at baseline and endpoint to measure their self-efficacy. RESULTS Thirty seven participants (17 Intervention, 20 Control) completed the whole study. The CLCF-Q identified some of the burdens faced by caregivers of children with CF. Total self-efficacy scores ranged from 36-53 in the intervention group and 37-51 in the control group at baseline. End-point scores ranged from 38-54 for the intervention group and 31-53 for the control group. Statistical analysis revealed that the self-efficacy of the intervention group remained stable over time and that of the control group decreased significantly by the end of the study. Self-efficacy scores decreased for six items and increased for six items in the intervention group. Only two items had higher scores in the control group and 10 items had lower scores at the end of the study. DISCUSSION The CLCF-Q may be used as a tool to measure burden in caregivers of children with CF. It helps health care providers recognise the burdens faced by these families. The feedback process aims to involve the caregiver and encourage them in areas of treatment which they find challenging. The combination of these two processes as an intervention may be used to maintain a high level of self-efficacy in caregivers of children with CF. The CFSE-Q was able to detect changes in self-efficacy and may be used in future self-efficacy trials in caregivers of patients with CF.