Background Asthma affects 5.4 million people in the UK. We wanted to explore the emotional journey patients with asthma experience during their management.
Methods Market research was conducted with an independent agency to investigate the emotional journey patients with asthma experience. Methodologies used to collect this data included patient immersion interviews with ethnographic elements, video diary and the Soulmate™ Duo interview technique. SoulmateTM is a technique where for a proportion of the interview, patients interview each other without a moderator, allowing deeper insight into their experiences to be obtained. A total of 21 patients were interviewed, including partners and families to fully understand the impact of asthma on the individual affected.
Results Experience of asthma varies considerably depending on whether symptoms first presented in early childhood or later in life. Patients diagnosed in childhood or infancy were found to normalise their symptoms more and may underestimate the severity of their condition, leading to lower adherence. Those diagnosed in adulthood were found to be more aware of the impact asthma was having upon their life. These patients tend to be regimented about taking medication and develop strategies to help them remember. Patients experience a range of emotional ups and downs throughout the treatment journey. The emotional dynamic was found to change with certain events, from diagnosis to their first asthma exacerbation. The key emotional themes identified with regards to asthma as a disease were feeling; 1) vulnerable and insecure of experiencing an asthma attack at any time, 2) restricted and constrained in terms of what they could do with their life, 3) tired and deflated over a battle that can never be won, 4) calm and relaxed when they did not experience symptoms. Impact on partners of patients with asthma was significant and often unrecognised.
Conclusions Patients diagnosed with asthma in childhood are at risk of under-estimating their symptoms and are potentially at greater risk of being mis-managed. These patients need a deeper exploration of their asthma symptoms to optimise their management.