Self-agency model of asthma management
Participants spoke about a model that we have designated as self-agency. Most people had identified their own responses to illness, and some were constantly planning their daily routines as a means of creating order in their lives. Developing alternative lifestyle habits appeared to be important for those who had embraced self-management. Taking control of their own lives was crucial for those who claimed to manage the self, as their accounts indicated that helping oneself was an important aspect of living with asthma. Taking action to deal with it was a part of everyday life, and the person became self-determining.
Some participants talked about self-management solely in terms of their own agency. Others ignored biomedical language and focused entirely on the impact of the condition on their lives and their responses to the impact. Penny described how she had learned to be ‘cagey’ or ‘sneaky’ in managing herself, and talked:
about having osteoporosis and asthma and being on medications
for both. It’s a vicious circle. I’ve learnt to be cagey. If I can’t breathe,
I go and look at why I can’t breathe. If I feel I can’t breathe, I might take a Throatie [a soothing cough sweet]. Sometimes that settles it, and I don’t go for the big guns first. If at night and it’s cold, I put my head under the bedclothes and breathe warm air. You get to be pretty
sneaky.
Taking control was evident in stories from people who were experts in management of the self, as Finlay described:
I was on Pulmicort as a preventative. And I put myself off them – told him (GP) I couldn’t handle the throat problem. I seem to be able to manage at present. I’ve done well, considering I’m 87 in a couple of week’s time. I do very well and rely on Ventolin largely. I think you should stick pretty close to your doctor and make a note, mentally at least, of things he needs to know.
Finlay had made decisions about which medications he would take, he prided himself on managing the ‘self’, and he was constantly working out ways to improve the ways he lived with asthma. He made decisions about what to share with the doctor and, in taking control, he had governed his
illness. Adams et al. (2001) showed that participants wished to remain in control by choosing when to seek care, and wanted to share decisions about initial changes in medication during moderate asthma exacerbations.
Experts in management of the self often have a long learning history, especially when they have lived with the condition for most of their lives (Kennedy 2003). Participants’ observations of the changes that had taken place in asthma management during the last 50 years was indeed
interesting. We heard about dietary requirements, when a child with asthma was expected to take only ‘black rye bread, lettuce and water’. Penny explained that as a 7-yearold
child:
I used to have asthma powder…you remember the tobacco tins the men used to smoke? Used to have to put it in a tin and burn it and inhale the smoke. Just makes you want to throw up thinking about it.
Penny’s sister, Diane, who also attended the PAR group meetings, said:
When growing up with my sister I was advised to get her out of bed and kneel on her chest and squeeze every bit out of her lungs until she took her breath. Like a resuscitation.
These people were experts on their own conditions and responses to illness because their life experiences had informed them about managing the self. Changes in medical management were monitored with vigilance. These people have seen many asthma management changes, and keeping
informed meant that they would be the first to know about better and new ways of managing their condition. In addition to searching for new information herself, Penny worked alongside her doctor: ‘My doctor tells me, ‘This is new on the market, so try this’. Penny had undertaken a process of learning from herself, others, peers, and doctors so that she could find a way for asthma to be part of her life. While she
was the first to say, ‘Asthma can make your life terrible’, she concentrated on things she could do – ‘write stories, paint instead of playing sport’. She had learned to do things without asking, ‘Why me?’
Management of the ‘self’ was a full-time job. Finlay asked the group to reflect on their self-management:
Are we taking management of asthma for granted just because we have this thing? We have found out for ourselves what is happening, we see articles on asthma, and we ask our doctor who may be more
prominent in thinking and diagnosis. I wonder whether we encourage people enough to find out things for themselves?
He had obviously made decisions for himself, and wanted to encourage others in the PAR group to take responsibility for themselves.
In summary, self-management was about reclaiming the self and regaining full human identity. This meant achieving recognition and support for self-monitoring practices.