Hearing the patient voice: Using video intervention/prevention assessment to understand teens with cystic fibrosis

Abstract

This qualitative study asked two questions: 1) How do teens with cystic fibrosis (CF) feel about their treatments; and 2) What factors lead teens to adhere, or not adhere, to treatments. To answer these questions we used an innovative approach (Video Intervention/Prevention Assessment or VIA), to learn about the experiences of teens with CF. We loaned video camcorders to teens with CF and asked them to create visual narratives of their lives. Researchers logged and coded videotapes, identifying themes that arose from the material. A primary theme was "Doctors don't understand." Participants also highlighted the value of routines and parental support in consistently doing treatments. We identify and discuss themes that emerged and discuss how findings can be used to help providers improve care, develop partnerships with patients and increase adherence.

Adherence to medication in adults with Cystic Fibrosis: An investigation using objective adherence data and the Theoretical Domains Framework

“…A range of qualitative studies, which have mainly used a thematic approach to analysis, and reviews have attempted to understand the factors influencing adherence to treatment in CF for adolescents and adults (Abbott, Havermans, & Hart, ; Arias‐llorente, García, & Martín, ; Foster et al ., ; George et al ., ; Hogan, Bonney, Brien, Karamy, & Aslani, ; Hoo, Boote, Wildman, Campbell, & Gardner, ; Horky, Sherman, Laura, Polvinen, & Rich, ; Lask, ; Macdonald et al ., ; Pakhale et al ., ; Sawicki, Heller, Demars, & Robinson, ). These have tended to find that adherence to treatment is reported to be influenced by the extent of treatment burden, having the time to do treatment, having a routine, forgetting to do treatment, a person's identity, perceptions of control, and social support.…”

When Is Forgetting Not Forgetting? A Discursive Analysis of Differences in Forgetting Talk Between Adults With Cystic Fibrosis With Different Levels of Adherence to Nebulizer Treatments

“…Forgetting is often cited as a barrier to adherence in both CF (e.g., Abbott et al, 2009; Bregnballe et al, 2011; Dziuban et al, 2010; George et al, 2010; Horky et al, 2014; Kahwati et al, 2016; Modi & Quittner, 2006; O’Toole et al, 2019; Owen & John, 2016; Plummer et al, 2008; Sawicki et al, 2014) and other chronic conditions (Gadkari & McHorney, 2012; Horne et al, 2005; Ingersoll & Cohen, 2008; Mills et al, 2006; Rathbone et al, 2017). We do not claim to have uncovered all the different ways in which forgetting is utilized to account for nonadherence of nebulizer treatments in CF (Morse, 2015).…”

“…Research has identified a number of barriers and facilitators to adherence in the adult and pediatric population with CF, including to nebulizer treatments. Commonly reported barriers to adherence include treatment burden, practical issues such as collecting prescriptions, and lack of time to do treatments; competing goals including a desire to be “normal”; lack of perceived treatment effectiveness and understanding of treatment recommendations; negative feelings about nebulizers or more general anxiety and depression; social and work demands; personal characteristics; current state of health; and forgetting (Abbott, Havermans, & Hart, 2009; Arden, Drabble, O’Cathain, Hutchings, & Wildman, 2019; Arias-Llorente, García, & Martín, 2011; George et al, 2010; Hogan, Bonney, Brien, Karamy, & Aslani, 2015; Horky, Sherman, & Polvinen, 2014; Lask, 1994; Macdonald et al, 2016; Plummer, Costall, & Torry, 2008; Sawicki, Heller, Demars, & Robinson, 2014).…”

“…Reported facilitators of adherence include accessibility and portability of treatment, adherence as part of an individual’s identity and maintaining control, awareness of the importance of treatment, social support, and having a routine (Arden et al, 2019; Arias-Llorente et al, 2011; Foster et al, 2001; George et al, 2010; Hogan et al, 2015; Hoo, Boote, Wildman, Campbell, & Gardner, 2017; Horky et al, 2014; Plummer et al, 2008; Sawicki et al, 2014).…”

“…Forgetting to take medication has been identified as a major barrier for both the adult and pediatric population with CF (Abbott et al, 2009; Bregnballe, Schiøtz, Boisen, Pressler, & Thastum, 2011; Dziuban, Saab-Abazeed, Chaudhry, Streetman, & Nasr, 2010; George et al, 2010; Horky et al, 2014; Modi & Quittner, 2006; Owen & John, 2016; Plummer et al, 2008; Sawicki et al, 2014). For example, Sawicki and colleagues (2014) reported that 29% of adolescent participants cited forgetting as the reason for not undertaking their nebulizer treatments.…”