Illness Experience, Self-Determination, and Recreational Activities in Pediatric Asthma

Abstract

Although asthma self-management depends on ongoing and accurate self-assessment by the patient, pediatric asthma patients have weak skills in the area of symptom perception. Before developing an asthma game targeted to improving asthma self-management and improved symptom awareness, we sought to identify gaps in existing games. To clarify the role of relatedness and autonomy in asthma health game design, we investigated symptom awareness, vocabulary, and self-determination through a series of semi-structured interviews with children suffering from asthma. Using self-determination theory as a framework, interviews were oriented to patients' illness experience and vocabulary related to symptomatology, as well as to recreational activities. Formative analysis of the interviews reveals attitudes, perceptions, and motivational factors arising in the context of childhood asthma, and it elucidates the images and vocabulary associated with both illness experience and recreational activities. Qualitative assessment of patient perspectives leads to specific recommendations for game design ideas that will support market entry of a spirometer-controlled game for children with asthma.

Promoting Factors for Physical Activity in Children with Asthma Explored through Concept Mapping

“…Their parents explained that the children indeed feel that they know a lot about it, but parents felt it was not enough, or that children were not able to convert their knowledge to corresponding behaviour. This was confirmed by results from a previous interview study among 15 children (7–17 years old) with asthma and their parents which showed that children do have knowledge about asthma-triggers, but need to be more aware of asthma symptoms and increase their knowledge about medication use [24]. In addition to the discrepancy between the children and the adults, a discrepancy between the parents and the healthcare providers was found.…”

‘It is like learning how to live all over again’ A systematic review of people’s experiences of living with a chronic illness from a self-determination theory perspective

“…Figure 1 provides a PRISMA flow diagram indicating the inclusion and exclusion of articles at each stage of the screening process. The included papers were published between 2011 and 2019, from Australia (Eassey, Reddel, Ryan, & Smith, 2019 ), the Netherlands (Knudsen et al, 2018 ), South Africa (Murphy, Chuma, Mathews, Steyn, & Levitt, 2015 ) and the United States (Bhattacharya, 2012 ; Bingham & Meyer, 2011 ; Bingham, Crane, & Manning, 2017 ). The included papers described people’s experiences of living with: cystic fibrosis (Bingham & Meyer, 2011 ; Knudsen et al, 2018 ), asthma (Bingham et al, 2017 ; Eassey et al, 2019 ), diabetes (Bhattacharya, 2012 ) and hypertension (Murphy et al, 2015 ).…”

“…The majority of studies did not focus on what matters to people in their everyday experiences of living with a chronic illness but rather more specifically on barriers to self-management (Bhattacharya, 2012 ; Bingham et al, 2017 ; Bingham & Meyer, 2011 ; Knudsen et al, 2018 ; Murphy et al, 2015 ). Of the six studies, four aimed to identify factors that could be used in subsequent intervention studies by focusing on the challenges to patients’ basic psychological needs (Bhattacharya, 2012 ; Bingham et al, 2017 ; Bingham & Meyer, 2011 ; Murphy et al, 2015 ), one study explored patient experiences of participating in a life coaching intervention (Knudsen et al, 2018 ) and one explored in depth the role of autonomy in experiences of living with a debilitating condition (Eassey et al, 2019 ). Five studies reported on all three of SDT’s basic psychological needs (autonomy, competence and relatedness) (Bhattacharya, 2012 ; Bingham et al, 2017 ; Bingham & Meyer, 2011 ; Knudsen et al, 2018 ; Murphy et al, 2015 ) and one study analysed and interpreted one of the needs (autonomy) in depth using people’s narratives (Eassey et al, 2019 ).…”

“…Of the six studies, four aimed to identify factors that could be used in subsequent intervention studies by focusing on the challenges to patients’ basic psychological needs (Bhattacharya, 2012 ; Bingham et al, 2017 ; Bingham & Meyer, 2011 ; Murphy et al, 2015 ), one study explored patient experiences of participating in a life coaching intervention (Knudsen et al, 2018 ) and one explored in depth the role of autonomy in experiences of living with a debilitating condition (Eassey et al, 2019 ). Five studies reported on all three of SDT’s basic psychological needs (autonomy, competence and relatedness) (Bhattacharya, 2012 ; Bingham et al, 2017 ; Bingham & Meyer, 2011 ; Knudsen et al, 2018 ; Murphy et al, 2015 ) and one study analysed and interpreted one of the needs (autonomy) in depth using people’s narratives (Eassey et al, 2019 ). A range of qualitative analysis methods was used; all sought to underpin their analysis or interpretation with SDT’s theory of basic psychological needs.…”

Developing Digital Games to Address Airway Clearance Therapy in Children With Cystic Fibrosis: Participatory Design Process

“…Transforming the respiratory therapy into a digital game has shown promising results in increasing adherence [12,13]. Digital games are artificial systems in which players interact, which comprise conflict, rules, and quantifiable outcomes [14].…”