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Assessing self efficacy in caregivers of children with cystic fibrosis

Publication Date
  • R Medicine (General)
  • Rj101 Child Health. Child Health Services
  • Communication
  • Medicine
  • Pharmacology
  • Psychology


Does the introduction of a parent reported outcome measure improve the self efficacy of caregivers of children with cystic fibrosis? Background: Parent Reported Outcome Measures (PROM) are an integral component of cystic fibrosis (CF) care yet there is little evidence supporting the role of PROM and their benefits. We are conducting a single centre pilot study to assess the impact of a PROM on the Self Efficacy (SE) of caregivers of children with CF. Aims: The aims of this study were to explore the feasibility and benefits of introducing the Challenges of Living with Cystic Fibrosis-Questionnaire (CLCF-Q) into clinical practice. The anticipated outcome was an increase in the SE of the caregivers. Methods: We are conducting a parallel randomised controlled intervention pilot study using the Cystic Fibrosis Self Efficacy-Questionnaire (CFSE-Q) as an outcome measure. All participants completed the CFSE-Q at 2 time points. Between these time points the intervention group completed the CLCF-Q as part of their annual assessment. They received feedback at their next clinic appointment from the team in the form of colour coded tables illustrating both the positive and negative issues raised in the CLCF-Q. They were invited to talk to members of the CF team and others (consultants, CF nurses, dieticians, physiotherapists, psychologists, pharmacists, family doctors and the school) about the issues raised in the CLCF-Q. Select participants (n=1) were also invited to participate in narrative interviews. Results: Preliminary data from 18 cases; of children aged 5-13 years (11♂, 7♀) are reported, (8 control, 10 intervention). The SE score ranged from 26/40 to 35/40 at baseline. In the control group the SE score remained relatively static whilst the intervention group has shown an increase in SE. Baseline SE ranged from 26/40 – 39/40 using only validated items and 36/56 – 53/56 including non-validated items. Average change in SE was -0.1 in the control group and 1.3 in the intervention group. With the inclusion of the non-validated items, average increase in SE was 0.8 in the control group and 4.2 in the intervention group. The control group showed consistent improvement in 4 items and a decline in 3 items. In comparison the intervention group showed consistent improvement in 8 items and decline in only 1 item. Conclusions: The CF team play a significant role in the lives of families of children with CF. They are recognised as invaluable by caregivers and are the first port of call when faced with a challenge. Potentially, the PROM CLCF-Q may have an important role in the annual assessment process. As well as extracting clinical data it raises unidentified concerns which may alert the CF team to otherwise un-recognised issues. A favourable consequence of routinely introducing the CLCF-Q into the annual assessment process may be an increase in the caregiver’s SE through improved communication between the caregiver and the CF team.

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