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

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

I’m going to tell you a little about myself: Illness centrality, self-image and identity in cystic fibrosis

This study assessed the illness centrality of adolescents with CF and the specific ways that CF may affect adolescents’ identities, through the qualitative analysis of video narratives. Adolescents with CF were loaned video cameras and asked to “show us your life outside the hospital” and to “teach your healthcare team about your CF.” Four major themes were identified related to illness centrality: CF is Central, CF is Compartmentalized, CF is Integrated into Self Image, CF is Denied. Integration and compartmentalization often co-existed. Four themes emerged related to the role of CF in self-image and identity: (1) Valence (positive or negative); (2) Control (no control or some control); (3) Difference/Normalcy (different, normal, normal except for CF); (4) Acceptance/adaptation (acknowledgement of CF, reworking life to accommodate CF). Adolescents did not have just one feeling about CF but felt differently at different times. Younger and/or healthier adolescents were less likely to focus on CF as central to their self-image. When not dealing directly with treatments or clinic visits, these adolescents had identities comprised largely of “typical” adolescent interests such as school, friends, hobbies, and family. CF played a more prominent role in the identities of older and sicker adolescents. Adolescents also found ways to adapt or alter their lives and their CF-related activities to make them feel more like “normal” adolescents. Implications for treatment are provided

Children's at Home: Pilot Study Assessing Dedicated Social Media for Parents of Adolescents with Neurofibromatosis Type 1.

The aim of this pilot study was to evaluate Children's at Home (C@H), a dedicated social media website for parents of adolescents with neurofibromatosis type 1 (NF1). The interventional study included two phases: (1) creating video intervention/prevention assessment (VIA) visual narratives about having an adolescent with NF1 and (2) interacting on C@H, a secure, medically moderated social media website. C@H was evaluated qualitatively at three time points. At enrollment (T0, N = 17), participants reported needing C@H to break their isolation, connect with other families, and receive accurate information, advice, and support from others facing similar challenges. At T1, after creating VIA during 6 months (N = 13, 145 videos), participants mostly valued the opportunity to speak about the challenges they face with NF1 and their journey since diagnosis. At T2, after interacting on C@H for 7 weeks (N = 10, two sign-ins/week/parent), participants reported connecting with other parents of children with NF1 for the first time, valuing the "real faces" and emotions of other parents with shared experiences providing a sense of normalcy. Qualitative analysis suggested that C@H decreased feelings of isolation, provided relief to talk about NF1 without having to explain it, provided new knowledge about NF1 and the opportunity to address non-medical issues of NF1 never discussed in clinic, and helped participants with putting their lives into perspective. C@H allowed parents of adolescents with NF1 to overcome previous isolation and connect for the first time. Innovative applications of social media dedicated to those who care for children with chronic conditions can provide peer-to-peer support, shared experience, and reliable medical information

Children's at Home: Dedicated Social Media for Parents of Adolescents With Neurofibromatosis Type 1

Purpose: To evaluate Children’s at Home (C@H), a social media website created for parents of adolescents with Neurofibromatosis Type 1 (NF1.) Methods: Interventional study for parents of adolescents with NF1 aged 13-18 years including 2 phases: (1) Creating Video Intervention/Prevention Assessment (VIA) visual narratives on smartphones about parenting a child with NF1; (2) Interacting on C@H, a secure, medically-moderated social media website, with phase 1 visual narratives and responses using video and text. C@H was evaluated qualitatively via semi-structured phone interviews at: enrollment (T0), after creating video narratives (T1), and after interacting with other parents on C@H (T2)