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The idea for the concept emerged from my dissertation study (2001) entitled “Symptom experiences in the illness trajectory of children with cancer and their families.” Four key findings emerged from my dissertation work related to how children’s symptoms were viewed and approached by the children, their families, and health care professionals. The first finding indicated that when symptoms were viewed or approached solely as side effects (e.g., nausea) or singular physical and psychological states, children provided minimal description of what they were actually experiencing. However, a more comprehensive understanding and description emerged when symptoms were approached as dynamic multidimensional experiences that occurred within a particular context. Children experienced and described their symptoms as overall feeling states that when deconstructed, limited their ability to convey the impact that the symptoms had on them. Critical to the children’s symptom experiences were the meanings that children assigned to them. A beginning model identified as the feeling state model for children with cancer emerged from my dissertation work. This model described key feeling states specific to the children’s symptom experiences and assigned meanings.
The second key finding that emerged was that existing self-report symptom instruments were judged to be of limited value by most of the children in the study. Limitations include: 1) instruments that are not meaningful to children or reflective of the children’s experiences; 2) instruments that do not consider multiple cancer symptoms; and 3) instruments that are not user-friendly for children with cancer. The need to assign meaning to their symptoms and the fact that they were experienced as comprehensive feeling states were perhaps the reason why children (regardless of age) became easily disinterested and frustrated when asked to rate their symptoms on standard paper and pencil self-assessment instruments (e.g., a visual analogue scale-VAS). The demanding nature of cancer and its long treatment course only further resulted in children finding minimal value and losing interest in using standard self-report instruments.
The third key finding that emerged was that children did use self-initiated coping strategies to deal with their cancer symptoms. However, children did not always reveal all their self-initiated coping strategies to those caring for them. The need to provide a means to support children in their use of self-initiated strategies became evident.
 Lastly, the fourth key finding that emerged from my work was that for most of the children in the study, complete symptom-relief was never achieved thereby affecting their quality of life. The inability to contain their symptoms could be partially related to the limitations of standard self-assessments measures and children not always communicating to their care providers their symptom experiences. Limitations of how children’s cancer symptom experiences are conceptualized and assessed, and the fact that symptom relief is difficult to achieve in children with cancer, support the need to reexamine how cancer symptoms experienced by children are approached. I hypothesize that conceptualizing children’s symptom experiences as overall feeling states based on assigned personal meanings may provide children with more control, incentive or reason to assess and manage certain facets of their cancer experiences.
In my dissertation work, I also observed how computer video-games served as a coping strategy for children with cancer. It was at that time I came up with the idea of developing a tool that incorporates the model of feeling states into a computer video-game format or approach.
Since completing my dissertation study, I have been involved in a series of studies meant to ascertain from healthy children and children with cancer their perspectives on what they think: 1) the computer video-game tool/format should look like and include; and 2) the feeling state model should include. Part of this work involved the development of a feeling state diary which allowed children to make entries about their feeling states, symptoms, other factors contributing to the children’s different ways of feeling, assigned meanings, the different coping strategies, and the impact that feeling states have on daily life. From these studies, it became apparent that the feeling state concept could be used not only by children with cancer, but by children experiencing other illnesses and challenging or stressful life conditions such as bullying (i.e., uncontrolled symptoms are only one type of a challenging event). It also became apparent that feeling states are very individualized and that may factors/situations can contribute to the different feeling states.
Development of Features of the Interactive Computer Tool: Presently I am developing the tool which consists of an online interactive virtual environment offering self-assessment, creative activities and games that are focused on the feeling states of children. The features and purpose of the tool reinforce that the tool is unique and different from any off-the-shelf program and is much more than Face maker. The concept of “feeling states” that I created forms the basis of the tool. The environment of the tool is developed to enhance the concept of feeling states and will allow children the opportunity to assess and express their feeling states as well as carry out therapeutic actions to deal with their feeling states. Additionally the program makes possible the gathering of information over time on children’s activities and thus serve as an assessment tool.
Research Testing Component: In addition to developing the tool I am planning for a series of studies testing the effectiveness of tool. My first study will involve testing the tool in children with cancer with a focus on evaluating its effectiveness on the children’s quality of life, that is, the degree of well-being felt by children. Other psychosocial measures will also be used such as measures that assess self-esteem or anxiety in children. It is expected that by using the tool, children will experience an increased quality of life and improvement in other psychosocial dimensions.
Significance of the Tool: The tool will have the potential to benefit children experiencing illness and other challenging life situations by: 1) Giving children the opportunity to express with their different ways of feelings through a “user-friendly” medium. 2) Educating children and helping them understand the things that are contributing to their feeling states. 3) In turn, by helping children engage in reappraisal processes through feedback from the environment may lead to more effective coping and better adjustment. Children will learn to cope with their feelings via experiential learning. 4) Helping health professionals and families better understand what children are experiencing which in turn may help them to devise more effectual, complete, and sensitive care plans.
In brief, this tool is significant and of value to improving the mental health and well-being of children as it will afford children the opportunity to communicate and cope with their different ways of feeling in an environment that promotes creativity, control, and a sense of accomplishment. The importance of this work has been recognized by a Canadian Institute of Health Research Operating Grant Award.
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