Patient knowledge, experiences and preferences regarding retinoblastoma and research: A qualitative study
Abstract Background We launched a patient engagement strategy to facilitate research involvement of the retinoblastoma (childhood eye cancer) community in Canada. To inform our strategy, we aimed to uncover the experiences with retinoblastoma, knowledge of retinoblastoma and research engagement amon...
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| Format: | Article |
| Language: | English |
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Wiley
2020-06-01
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| Series: | Health Expectations |
| Subjects: | |
| Online Access: | https://doi.org/10.1111/hex.13043 |
| _version_ | 1819230611267649536 |
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| author | Catherine Moses Kaitlyn Flegg Helen Dimaras |
| author_facet | Catherine Moses Kaitlyn Flegg Helen Dimaras |
| author_sort | Catherine Moses |
| collection | DOAJ |
| description | Abstract Background We launched a patient engagement strategy to facilitate research involvement of the retinoblastoma (childhood eye cancer) community in Canada. To inform our strategy, we aimed to uncover the experiences with retinoblastoma, knowledge of retinoblastoma and research engagement among retinoblastoma survivors and parents. Methods Focus groups were held in Toronto and Calgary, including both in‐person and remote participants (via videoconference). Discussions centred on experience with retinoblastoma, knowledge of the disease and engagement with research. Focus group transcripts were evaluated by inductive thematic analysis. Results Four focus groups (3 in Toronto, 1 in Calgary) were held with a collective total of 34 participants. Retinoblastoma had a substantial impact on the life of participants, but overall, patients reported being able to adapt and persevere. Experiential knowledge of retinoblastoma was identified as distinct from the theoretical knowledge held by their clinicians. Participants indicated they often acted as a knowledge broker, communicating information about the cancer to their social networks. Participants were willing to engage in research as partners, but recognized barriers such as time and appropriate training. Conclusions Patients view their experiential knowledge of retinoblastoma as valuable to improving care and directing research. There is a unique role for research engagement in meeting the educational needs of patients. |
| first_indexed | 2024-12-23T11:31:49Z |
| format | Article |
| id | doaj.art-c0629eb63b6f4793ae6870988f2fd387 |
| institution | Directory Open Access Journal |
| issn | 1369-6513 1369-7625 |
| language | English |
| last_indexed | 2024-12-23T11:31:49Z |
| publishDate | 2020-06-01 |
| publisher | Wiley |
| record_format | Article |
| series | Health Expectations |
| spelling | doaj.art-c0629eb63b6f4793ae6870988f2fd3872022-12-21T17:48:46ZengWileyHealth Expectations1369-65131369-76252020-06-0123363264310.1111/hex.13043Patient knowledge, experiences and preferences regarding retinoblastoma and research: A qualitative studyCatherine Moses0Kaitlyn Flegg1Helen Dimaras2Department of Ophthalmology & Vision Sciences The Hospital for Sick Children Toronto ON CanadaDepartment of Ophthalmology & Vision Sciences The Hospital for Sick Children Toronto ON CanadaDepartment of Ophthalmology & Vision Sciences The Hospital for Sick Children Toronto ON CanadaAbstract Background We launched a patient engagement strategy to facilitate research involvement of the retinoblastoma (childhood eye cancer) community in Canada. To inform our strategy, we aimed to uncover the experiences with retinoblastoma, knowledge of retinoblastoma and research engagement among retinoblastoma survivors and parents. Methods Focus groups were held in Toronto and Calgary, including both in‐person and remote participants (via videoconference). Discussions centred on experience with retinoblastoma, knowledge of the disease and engagement with research. Focus group transcripts were evaluated by inductive thematic analysis. Results Four focus groups (3 in Toronto, 1 in Calgary) were held with a collective total of 34 participants. Retinoblastoma had a substantial impact on the life of participants, but overall, patients reported being able to adapt and persevere. Experiential knowledge of retinoblastoma was identified as distinct from the theoretical knowledge held by their clinicians. Participants indicated they often acted as a knowledge broker, communicating information about the cancer to their social networks. Participants were willing to engage in research as partners, but recognized barriers such as time and appropriate training. Conclusions Patients view their experiential knowledge of retinoblastoma as valuable to improving care and directing research. There is a unique role for research engagement in meeting the educational needs of patients.https://doi.org/10.1111/hex.13043focus groupspatient and public involvementpatient engagementpatient‐oriented researchresearch engagementresearch priorities |
| spellingShingle | Catherine Moses Kaitlyn Flegg Helen Dimaras Patient knowledge, experiences and preferences regarding retinoblastoma and research: A qualitative study Health Expectations focus groups patient and public involvement patient engagement patient‐oriented research research engagement research priorities |
| title | Patient knowledge, experiences and preferences regarding retinoblastoma and research: A qualitative study |
| title_full | Patient knowledge, experiences and preferences regarding retinoblastoma and research: A qualitative study |
| title_fullStr | Patient knowledge, experiences and preferences regarding retinoblastoma and research: A qualitative study |
| title_full_unstemmed | Patient knowledge, experiences and preferences regarding retinoblastoma and research: A qualitative study |
| title_short | Patient knowledge, experiences and preferences regarding retinoblastoma and research: A qualitative study |
| title_sort | patient knowledge experiences and preferences regarding retinoblastoma and research a qualitative study |
| topic | focus groups patient and public involvement patient engagement patient‐oriented research research engagement research priorities |
| url | https://doi.org/10.1111/hex.13043 |
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