Perspectives on adapting a mobile application for pain self-management in neurofibromatosis type 1: results of online focus group discussions with individuals living with neurofibromatosis type 1 and pain management experts
Objective Neurofibromatosis type 1 (NF1) is a genetic disorder in which chronic pain commonly occurs. The study sought to understand the needs of individuals with NF1 and pain management experts when adapting a pain self-management mobile health application (app) for individuals with NF1.Design We c...
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BMJ Publishing Group
2022-07-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/12/7/e056692.full |
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| author | Chitra Lalloo Lauretta E Grau Kaitlyn Larkin Jennifer N Stinson William T Zempsky Samuel A Ball Frank D Buono |
| author_facet | Chitra Lalloo Lauretta E Grau Kaitlyn Larkin Jennifer N Stinson William T Zempsky Samuel A Ball Frank D Buono |
| author_sort | Chitra Lalloo |
| collection | DOAJ |
| description | Objective Neurofibromatosis type 1 (NF1) is a genetic disorder in which chronic pain commonly occurs. The study sought to understand the needs of individuals with NF1 and pain management experts when adapting a pain self-management mobile health application (app) for individuals with NF1.Design We conducted a series of online, audio-recorded focus groups that were then thematically analysed.Setting Online focus groups with adults currently residing in the USA.Participants Two types of participants were included: individuals with NF1 (n=32 across six focus groups) and pain management experts (n=10 across three focus groups).Results Six themes across two levels were identified. The individual level included lifestyle, reasons for using the mobile app and concerns regarding its use. The app level included desired content, desired features and format considerations. Findings included recommendations to grant free access to the app and include a community support feature for individuals to relate and validate one another’s experience with pain from NF1. In addition, participants noted the importance of providing clear instructions on navigating the app, the use of an upbeat, hopeful tone and appropriate visuals.Conclusions Both participant groups endorsed the use of iCanCope (iCC) as an NF1 pain self-management mobile app. Differences between groups were noted, however. The NF1 group appeared interested in detailed and nuanced pain tracking capabilities; the expert group prioritised tracking information such as mood, nutrition and activity to identify potential associations with pain. In tailoring the existing iCC app for individuals with NF1, attention should be paid to creating a community support group feature and to tailoring content, features and format to potential users’ specific needs. |
| format | Article |
| id | doaj-art-95934975ce354469b776c524618607d6 |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2022-07-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-95934975ce354469b776c524618607d62025-01-30T14:20:08ZengBMJ Publishing GroupBMJ Open2044-60552022-07-0112710.1136/bmjopen-2021-056692Perspectives on adapting a mobile application for pain self-management in neurofibromatosis type 1: results of online focus group discussions with individuals living with neurofibromatosis type 1 and pain management expertsChitra Lalloo0Lauretta E Grau1Kaitlyn Larkin2Jennifer N Stinson3William T Zempsky4Samuel A Ball5Frank D Buono6Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, CanadaDepartment of Epidemiology of Microbial Diseases, Yale University Yale School of Public Health, New Haven, Connecticut, USADepartment of Psychiatry, Yale School of Medicine, New Haven, Connecticut, USAInstitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, CanadaDepartment of Pediatrics and Nursing, University of Connecticut School of Medicine, Farmington, Connecticut, USADepartment of Psychiatry, Yale School of Medicine, New Haven, Connecticut, USADepartment of Psychiatry, Yale School of Medicine, New Haven, Connecticut, USAObjective Neurofibromatosis type 1 (NF1) is a genetic disorder in which chronic pain commonly occurs. The study sought to understand the needs of individuals with NF1 and pain management experts when adapting a pain self-management mobile health application (app) for individuals with NF1.Design We conducted a series of online, audio-recorded focus groups that were then thematically analysed.Setting Online focus groups with adults currently residing in the USA.Participants Two types of participants were included: individuals with NF1 (n=32 across six focus groups) and pain management experts (n=10 across three focus groups).Results Six themes across two levels were identified. The individual level included lifestyle, reasons for using the mobile app and concerns regarding its use. The app level included desired content, desired features and format considerations. Findings included recommendations to grant free access to the app and include a community support feature for individuals to relate and validate one another’s experience with pain from NF1. In addition, participants noted the importance of providing clear instructions on navigating the app, the use of an upbeat, hopeful tone and appropriate visuals.Conclusions Both participant groups endorsed the use of iCanCope (iCC) as an NF1 pain self-management mobile app. Differences between groups were noted, however. The NF1 group appeared interested in detailed and nuanced pain tracking capabilities; the expert group prioritised tracking information such as mood, nutrition and activity to identify potential associations with pain. In tailoring the existing iCC app for individuals with NF1, attention should be paid to creating a community support group feature and to tailoring content, features and format to potential users’ specific needs.https://bmjopen.bmj.com/content/12/7/e056692.full |
| spellingShingle | Chitra Lalloo Lauretta E Grau Kaitlyn Larkin Jennifer N Stinson William T Zempsky Samuel A Ball Frank D Buono Perspectives on adapting a mobile application for pain self-management in neurofibromatosis type 1: results of online focus group discussions with individuals living with neurofibromatosis type 1 and pain management experts BMJ Open |
| title | Perspectives on adapting a mobile application for pain self-management in neurofibromatosis type 1: results of online focus group discussions with individuals living with neurofibromatosis type 1 and pain management experts |
| title_full | Perspectives on adapting a mobile application for pain self-management in neurofibromatosis type 1: results of online focus group discussions with individuals living with neurofibromatosis type 1 and pain management experts |
| title_fullStr | Perspectives on adapting a mobile application for pain self-management in neurofibromatosis type 1: results of online focus group discussions with individuals living with neurofibromatosis type 1 and pain management experts |
| title_full_unstemmed | Perspectives on adapting a mobile application for pain self-management in neurofibromatosis type 1: results of online focus group discussions with individuals living with neurofibromatosis type 1 and pain management experts |
| title_short | Perspectives on adapting a mobile application for pain self-management in neurofibromatosis type 1: results of online focus group discussions with individuals living with neurofibromatosis type 1 and pain management experts |
| title_sort | perspectives on adapting a mobile application for pain self management in neurofibromatosis type 1 results of online focus group discussions with individuals living with neurofibromatosis type 1 and pain management experts |
| url | https://bmjopen.bmj.com/content/12/7/e056692.full |
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