Patient and Caregiver Education

Respiratory Care: Scenario

One of the most difficult ethical scenarios which may arise is when a patient is not fully compliant with treatment. In one of the cases I observed, a child had recently been diagnosed with asthma. Unfortunately, the parent was not able to offer the child the ideal environment for coping with his asthma. The parent and child lived in a very dusty environment and it was difficult for the parent to bring the child in for regular checkups. The child was frequently taken to the emergency room because of difficulties in controlling his asthma. There was heavy reliance upon inhaled corticosteroids and other medications primarily intended for short-term use. The parent was also reluctant to allow the child to participate in regular activities such as sports. The child was overweight and this caused a spiral of problems for the child: not being able to participate in normal activities, low self-esteem and having acute anxiety about having an attack at any time.

The parent was also highly stressed herself. She was a single mother working long hours to support her family. Managing the child's exposure to dust and ensuring the right balance of medications was very difficult in addition to all of the other responsibilities she was juggling. It was essential to help this family better manage the child's asthma without seeming to be judgmental of the struggles they were undergoing as the mother could be very defensive about accepting criticism. The approach to asthma management they were engaging in, however, involved simply responding to one crisis after another rather than genuinely managing the illness. Health literacy was also an issue, given that the parent had little experience with managing a chronic illness. Overall, the Pediatric Asthma Caretaker Quality of Life Score, an indicator used to assess caregiver competency indicated deficits of both activity limitation and also emotional function (i.e. anxiety and stress) for the child caused by asthma (Juniper 1996).

Guidelines/Standards

Asthma education was needed for both parent and child. According to the AARC Clinical Practice Guidelines in providing patient and caregiver training, a lack of education in plain language and low levels of health literacy can present obstacles in effective management of respiratory conditions (6.1; 7.1.5). A reassessment of the patient's needs was first conducted to ensure that no information had been omitted in a manner which was complicating treatment. Although the caregiver's motivation to protect her child was high, this was complicated by her need to work long hours and to manage the rest of the stresses of daily life (8.1). New goals were set regarding the management of asthma, including a regular cleaning schedule for the child's bedroom and other measures to reduce the dust in the house, including an air filter. A schedule of moderate regular physical activity (such as going to the playground everyday) was suggested that the child's grandmother could help participate in as part of non-medicated asthma control. Stress management and breathing techniques were suggested for the child that the parent could help talk her son through when he experienced an attack. These specific goals made managing the asthma more feasible given their concrete nature.