Family caregivers of people who have intellectual/developmental disabilities and asthma: Caregiver knowledge of asthma self-management conceptsA pilot study

Accessible Summary Asthma is a problem for many people. Some people need help with their medicines for asthma. People who help with medicines should know how medicines work and how they are used. This study found that many helpers need more education about asthma medicines. Abstract Background People who have an intellectual or developmental disability (IDD) and asthma are at greater risk of poor health outcomes. They often require assistance from caregivers when managing their medicines. The objective of this pilot study was to assess the level of understanding of asthma self-management concepts of family caregivers who provide assistance to people who IDD and asthma. Results will inform future needs assessment and intervention studies. Materials and Methods Nineteen caregivers of people who have asthma and IDD completed a mailed survey. The survey included scales to measure asthma self-management concepts, inhaler technique knowledge, medication adherence and control of asthma. The caregivers were instructed to complete most of the scales with reference to the person with IDD. Results Most caregivers had acceptable health literacy, but had low scores on the asthma self-management and inhaler technique tests. The most frequently cited barriers to controlling asthma were inadequate caregiver and patient education about the illness as well as knowing and avoiding asthma triggers. The most frequently cited barriers to medication management were knowing inhaler technique, knowledge of medication and forgetting to use medication. Asthma was controlled in 63.2% of patients, while almost 75% of patients were considered nonadherent to controller therapy. Conclusions Most caregivers had inadequate understanding of asthma self-management as well as inhaler technique despite having high health literacy. Improving caregiver and patient knowledge and skills may lead to better asthma control.