A formative study exploring perceptions of physical activity and physical activity monitoring among children and young people with cystic fibrosis and health care professionals

Abstract

BackgroundPhysical activity (PA) is associated with reduced hospitalisations and maintenance of lung function in patients with Cystic Fibrosis (CF). PA is therefore recommended as part of standard care. Despite this, there is no consensus for monitoring of PA and little is known about perceptions of PA monitoring among children and young people with CF. Therefore, the research aimed to explore patients’ perceptions of PA and the acceptability of using PA monitoring devices with children and young people with CF.MethodsAn action research approach was utilised, whereby findings from earlier research phases informed subsequent phases. Four phases were utilised, including patient interviews, PA monitoring, follow-up patient interviews and health care professional (HCP) interviews. Subsequently, an expert panel discussed the study to develop recommendations for practice and future research.ResultsFindings suggest that experiences of PA in children and young people with CF are largely comparable to their non-CF peers, with individuals engaging in a variety of activities. CF was not perceived as a barrier per se, although participants acknowledged that they could be limited by their symptoms. Maintenance of health emerged as a key facilitator, in some cases PA offered patients the opportunity to ‘normalise’ their condition.Participants reported enjoying wearing the monitoring devices and had good compliance. Wrist-worn devices and devices providing feedback were preferred. HCPs recognised the potential benefits of the devices in clinical practice.Recommendations based on these findings are that interventions to promote PA in children and young people with CF should be individualised and involve families to promote PA as part of an active lifestyle. Patients should receive support alongside the PA data obtained from monitoring devices.ConclusionsPA monitoring devices appear to be an acceptable method for objective assessment of PA among children and young people with CF and their clinicians. Wrist-worn devices, which are unobtrusive and can display feedback, were perceived as most acceptable. By understanding the factors impacting PA, CF health professionals will be better placed to support patients and improve health outcomes.Electronic supplementary materialThe online version of this article (10.1186/s12887-018-1301-x) contains supplementary material, which is available to authorized users.

Barriers and facilitators to physical activity among children, adolescents, and young adults with cystic fibrosis: a systematic review and thematic synthesis of qualitative research

“…The included studies were published between 2008 and 2018. One study was conducted in Australia,38 three in Canada,39–41 two in USA,42 43 and one in the UK 44. All studies reported the use of semistructured interviews.…”

“…One study reported the use of telephone interviews 43. Methods of analysis included interpretive phenomenology,38 44 thematic analysis,40 42 43 grounded theory41 and case study analysis 39. The rationale for the conduct of the work was to increase understanding of physical activity among children with CF,38 promote children’s participation in research38 and to inform the development of interventions to promote physical activity 40–43…”

“…All had a confirmed diagnosis of CF, although two studies included participants with other chronic conditions; including coronary heart disease,40 asthma38 and type 1 diabetes 38. Three studies also included parents of young people with CF alongside the perspective of the young person with CF,38 40 42 and one study included the views of healthcare professionals 44. Three of the included studies were written by the same lead author 40 41.…”

“…Within the seven papers, positive and negative perceptions of physical activity were considered to be influential in engagement with physical activity 39 42–44. Positive perceptions included enjoyment, mastery and autonomy, and appeared to be highly influenced by previous experiences of physical activity, the health of the individual and the social environment in which physical activity was performed.…”

“…In contrast, negative perceptions of physical activity appeared to decrease motivation for physical activity. Unpleasant sensations such as discomfort, muscle soreness, fatigue, joint pain and breathlessness,42 44 and a lack of enjoyment or boredom43 were reported. As an example, one participant in the study by Shelley et al 44 dislikes the way exercise ‘gives you the pains the next day.…”