Empowering patients with sickle cell anemia and their families through innovative educational methods
Abstract Sickle cell disease (SCD) is a group of inherited blood disorders caused by a mutation in the beta subunit of hemoglobin (HbS). SCD will hereafter be referred to as sickle cell anemia (SCA) as this is the term our patients and their families prefer. There are approximately 5000 Canadians li...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2023-11-01
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| Series: | eJHaem |
| Subjects: | |
| Online Access: | https://doi.org/10.1002/jha2.760 |
| _version_ | 1797542443278663680 |
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| author | Riley Plett Craig Eling Sarah Tehseen Kathleen Felton Gina Martin Vivian Sheppard Megan Pegg Roona Sinha |
| author_facet | Riley Plett Craig Eling Sarah Tehseen Kathleen Felton Gina Martin Vivian Sheppard Megan Pegg Roona Sinha |
| author_sort | Riley Plett |
| collection | DOAJ |
| description | Abstract Sickle cell disease (SCD) is a group of inherited blood disorders caused by a mutation in the beta subunit of hemoglobin (HbS). SCD will hereafter be referred to as sickle cell anemia (SCA) as this is the term our patients and their families prefer. There are approximately 5000 Canadians living with SCA including children. Pediatric SCA patient education can: improve knowledge, decrease hospitalization, improve medication possession ratio, lead to better SCA‐related functioning, and lower pain impact. Innovative educational materials were developed to improve knowledge and self‐efficacy regarding the illness management of patients and parents/guardians. Patients (n = 5; aged 8–18) with SCA and parents (n = 5) of patients (aged 0–18) were recruited via flyers sent directly to patients and distributed through partner patient organization Sickle Cell Awareness Network of Saskatchewan. Patient and parent focus groups were held separately over Zoom to receive feedback for the video. An additional interview was held for a participant that required a translation of the video. Audio recordings were transcribed using Zoom and Otter.ai. The coding of transcripts was facilitated by NVivo (QSR International Pty Ltd, 2022, release 1.6.2). The thematic analysis centered around SCA management concepts relevant to the research aims. Important themes that emerged included ‘Age Appropriateness’, ‘Empowerment’, ‘Knowledge Gaps’, ‘Linguistic Accessibility’, ‘Medication Adherence’, ‘Strength in Community’, and ‘Transition to Adult Care’. The video was well received, and “brought peace of mind”. Patient feedback was incorporated into the final version of the educational materials. |
| first_indexed | 2024-03-10T13:30:35Z |
| format | Article |
| id | doaj.art-05d0dd9e3eca4cf18d4ff1baad6d637d |
| institution | Directory Open Access Journal |
| issn | 2688-6146 |
| language | English |
| last_indexed | 2024-03-10T13:30:35Z |
| publishDate | 2023-11-01 |
| publisher | Wiley |
| record_format | Article |
| series | eJHaem |
| spelling | doaj.art-05d0dd9e3eca4cf18d4ff1baad6d637d2023-11-21T07:58:46ZengWileyeJHaem2688-61462023-11-014494995510.1002/jha2.760Empowering patients with sickle cell anemia and their families through innovative educational methodsRiley Plett0Craig Eling1Sarah Tehseen2Kathleen Felton3Gina Martin4Vivian Sheppard5Megan Pegg6Roona Sinha7Department of Pediatrics University of Saskatchewan SaskatoonCanadaPediatric Hematology/Oncology Department of Pediatrics Jim Pattison Children's Hospital SaskatoonCanadaDepartment of Pediatrics University of Saskatchewan SaskatoonCanadaDepartment of Pediatrics University of Saskatchewan SaskatoonCanadaDepartment of Pediatrics University of Saskatchewan SaskatoonCanadaPediatric Hematology/Oncology Department of Pediatrics Jim Pattison Children's Hospital SaskatoonCanadaPediatric Hematology/Oncology Department of Pediatrics Jim Pattison Children's Hospital SaskatoonCanadaDepartment of Pediatrics University of Saskatchewan SaskatoonCanadaAbstract Sickle cell disease (SCD) is a group of inherited blood disorders caused by a mutation in the beta subunit of hemoglobin (HbS). SCD will hereafter be referred to as sickle cell anemia (SCA) as this is the term our patients and their families prefer. There are approximately 5000 Canadians living with SCA including children. Pediatric SCA patient education can: improve knowledge, decrease hospitalization, improve medication possession ratio, lead to better SCA‐related functioning, and lower pain impact. Innovative educational materials were developed to improve knowledge and self‐efficacy regarding the illness management of patients and parents/guardians. Patients (n = 5; aged 8–18) with SCA and parents (n = 5) of patients (aged 0–18) were recruited via flyers sent directly to patients and distributed through partner patient organization Sickle Cell Awareness Network of Saskatchewan. Patient and parent focus groups were held separately over Zoom to receive feedback for the video. An additional interview was held for a participant that required a translation of the video. Audio recordings were transcribed using Zoom and Otter.ai. The coding of transcripts was facilitated by NVivo (QSR International Pty Ltd, 2022, release 1.6.2). The thematic analysis centered around SCA management concepts relevant to the research aims. Important themes that emerged included ‘Age Appropriateness’, ‘Empowerment’, ‘Knowledge Gaps’, ‘Linguistic Accessibility’, ‘Medication Adherence’, ‘Strength in Community’, and ‘Transition to Adult Care’. The video was well received, and “brought peace of mind”. Patient feedback was incorporated into the final version of the educational materials.https://doi.org/10.1002/jha2.760hematologypediatric hematology/oncologysickle cell anemiasickle cell disease |
| spellingShingle | Riley Plett Craig Eling Sarah Tehseen Kathleen Felton Gina Martin Vivian Sheppard Megan Pegg Roona Sinha Empowering patients with sickle cell anemia and their families through innovative educational methods eJHaem hematology pediatric hematology/oncology sickle cell anemia sickle cell disease |
| title | Empowering patients with sickle cell anemia and their families through innovative educational methods |
| title_full | Empowering patients with sickle cell anemia and their families through innovative educational methods |
| title_fullStr | Empowering patients with sickle cell anemia and their families through innovative educational methods |
| title_full_unstemmed | Empowering patients with sickle cell anemia and their families through innovative educational methods |
| title_short | Empowering patients with sickle cell anemia and their families through innovative educational methods |
| title_sort | empowering patients with sickle cell anemia and their families through innovative educational methods |
| topic | hematology pediatric hematology/oncology sickle cell anemia sickle cell disease |
| url | https://doi.org/10.1002/jha2.760 |
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