To develop and validate an educational tool consisting of a deck of cards for caregivers to educate them to autonomously and safely manage biological antineoplastic oral therapy for their family members at home. This will also increase patients’ adherence to treatment.
Methods:
We started from the definition of ‘self-management’ coined by Corbin & Strauss (1988): ‘Self-management aims at helping patients to maintain a wellness in their foreground perspective’ (Lorig & Holman 2003, p. 1). Therefore, self-management is based on the perception patients have about problems linked to their conditions. This led us to choose a method based on the theory of problem-based learning, such as the Barrows Cards (Barrows & Tamblyn, 1977), and applied it to patients with the purpose of improving self-management through therapeutic education.
The Barrows Cards were originally used to test decision-making skills and critical thinking in medical students. This method—also known as the ‘Portable Patient Problem Pack’ or simply P4 System—uses a situational card that describes a complex problem and learners can choose from a deck of at least 15 cards each of which describes a possible solution to that problem with the support of a picture.
Two focus groups with a group of 12 oncologists and cancer nurses were conducted at our Teaching Hospital in Genoa to define the themes to include in the cards. Also the nursing diaries of the last 6 months of nurses directly caring for cancer patients were included in the study. The 15 cards were then tested on 18 caregivers to verify if the contents (terminology and pictures) on the cards were clear and appropriate.
The instrument development process included the following steps: 1) A review of the literature to retrieve scientific evidence to support the purpose of our study; 2) Obtaining support and advice from 12 cancer experts; 3) Checking the nursing records diaries of the last six months; 4) Obtaining feedback from caregivers on the clarity of the statement provided on each card and on the appropriateness of the picture that illustrates the statement.
Results:
At the end of this study, all of the 18 caregivers were satisfied with the deck of 15 cards, plus a situational card initially developed by our cancer experts. On the cards, caregivers preferred to include photographs rather than drawn illustrations. This qualitative process enabled to validate the cards for caregivers.
Conclusion:
The lack of adherence to therapy not only reduces the effectiveness of therapeutic treatment but incorrect management of the therapy can also lead to adverse events. Therefore, at home caregivers play an important role in ensuring that the people they care for correctly adhere to the treatment prescribed, and yet the importance of their role is neglected. It is important for nurses to provide caregivers with structured education interventions to help them manage treatment and monitor adverse effects in a more confident manner. This will improve adherence to treatment and outcomes both for patients and their caregivers, who will feel more confident and less burdened by the fear of making mistakes. However, more work will be needed to confirm this.
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