Research paperPatients’ learning and understanding during their breast cancer trajectory
Introduction
During the last decades, hospital stay after breast cancer surgery has been shortened and the need for patient support has been emphasized [1], [2], [3]. Breast cancer surgery is frequently performed as day surgery in many countries including Sweden where this study was carried out. The short hospital stay puts new and high demands on patients’ knowledge, understanding and engagement in self-care [4], [5], [6]. Patient participation has become fundamental for safe care; achieving this goal urgently requires a better understanding of how to effectively support the individual to cope with, comprehend and make decisions about their disease [7], [8], [9].
The need for improved information and communication in cancer care has long been emphasized [10], [11], [12], [13], [14], [15]. Breast cancer is an overwhelming transitional experience for any individual, with long-term implications on personal life and identity. Women with breast cancer have considerable information needs and positive associations have been found between high satisfaction with information and health related quality of life [15], [16], [17]. A recent literature review revealed that information is still one of the most unmet needs among women diagnosed with breast cancer [18]. This is in accordance with findings from recent studies in Sweden demonstrating patients’ ratings of information during breast cancer treatment as insufficient [16], [19].
Education for cancer patients has been evaluated primarily in terms of its effects on knowledge and emotions [20], [21], [22], [23], [24]. Research about patients’ learning during cancer treatment has mostly focused on what a person learns [20], [25], [26], [27] but only rarely on how this learning proceeds. Studies on patients’ learning about breast cancer have focused on women who use self-directed learning or computer-based systems [28], [29], [30]. Ventura et al. [30] found no effect of a computer-based educational program on breast cancer patients’ health self-efficacy, their healthcare participation or on anxiety and depression levels compared to controls. They concluded that the program might not have been relevant or useful for the participants as the information was delivered one-way which is not enough to influence multi-dimensional outcomes. Their findings are in accordance with a systematic review of online interventions for cancer patients which showed unclear efficacy [31].
It is not known how women with breast cancer interpret and understand information and its significance regarding the likelihood for successful participation in treatment and care [32]. Evidence of improved communication is difficult to capture due to the complexity of the encounter between patients and health professionals [33]. Further, there is a call for developing strategies to support patients to engage in their treatment and care and define their learning needs [34], [35]. Changing perspective from patients’ information needs to their learning is expected to increase our understanding about how participation in their breast cancer care can be supported.
This study focuses on patient learning and is based on the consensus of contemporary learning theories emphasizing that all learning involves active constructive processes in the learner [36]. Receiving information is not enough, learning includes perceiving and processing a variety of stimuli, cognitively, emotionally, and through practice. Learning is about gaining knowledge to understand what you see, hear, read and feel and to be able to approach and handle encountered situations. Understanding is constructed by the individual in interaction with others and the context and contributes to a transformed understanding reflected in actions, thinking, and reactions [37], [38], [39]. Merleau-Ponty [40] stresses the importance of not applying a dualistic division of a person into a thinking, feeling being and a physical body since the whole person is involved when we are experiencing and learning. The learner’s pre-understanding, what the learner already knows, thinks and feels in relation to a situation or phenomenon, constitutes the basis for learning something new [38], [39]. A fundamental driving force of learning is to understand and deal with situations which are perceived as relevant and meaningful [38]. Special circumstances for learning are created during a serious illness as the patient faces an uncertain future with dramatic existential implications. To increase our understanding about this phenomena the aim of this study was to explore how women learn about and understand their disease, treatment, care, and life-situation during their breast cancer trajectory.
Section snippets
Material and methods
A qualitative approach was used as it contributes to illuminating human beings’ meaning making of experiences [41]. The study was divided in two parts. In part one, the current study, women’s learning and understanding during their breast cancer trajectory were explored. Part two (to be published), focuses on the women’s participation in treatment and care in relation to their understanding.
Results
Three themes describing women’s learning and understanding during a breast cancer experience were revealed (Table 3):
Interacting with a diversity of information: women interact with a vast amount of information from various sources, including perceptions of bodily sensations and events in healthcare.
Concealed and expressed understandings: women’s interpretation of information results in various understandings – relating to emotional, cognitive, and management dimensions – which can be concealed
Discussion
This study is one of the first to investigate the process and content of learning about breast cancer from the perspectives of diagnosed women. A main finding is that while basic theories of learning remain valid, vulnerable patients with a life-threatening illness, like breast cancer, need special attention concerning support in their learning processes. Patients' learning and understanding has become an important issue since substantial responsibility regarding self-care is given back to the
Conflicts of interest
The authors declare no conflicts of interests.
Funding
This study was financially supported by Karolinska Institutet in collaboration with the Regional Cancer Centre Stockholm-Gotland, Stockholm County Council. The funding parties were not involved in the study.
Acknowledgements
The authors would first of all like to thank the participating women who generously shared their experiences and Ann-Sofi Oddestad and Karin Engström for their assistance with transcriptions of the interviews.
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