I don’t want to think about it: a qualitative study of children (6–18 years) with rheumatic diseases and parents’ experiences with regular needle injections at home
Abstract Background Overall outcomes of pediatric rheumatic diseases (RD) have improved due to treatment with biologic agents and methotrexate. For many children, this treatment often entails regular needle injections. Pain and fear of needle injections are common in childhood, but how children and...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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BMC
2021-01-01
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| Series: | Pediatric Rheumatology Online Journal |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12969-021-00495-4 |
| _version_ | 1818923287535681536 |
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| author | Kari Sørensen Helge Skirbekk Gunnvald Kvarstein Hilde Wøien |
| author_facet | Kari Sørensen Helge Skirbekk Gunnvald Kvarstein Hilde Wøien |
| author_sort | Kari Sørensen |
| collection | DOAJ |
| description | Abstract Background Overall outcomes of pediatric rheumatic diseases (RD) have improved due to treatment with biologic agents and methotrexate. For many children, this treatment often entails regular needle injections. Pain and fear of needle injections are common in childhood, but how children and parents handle long-term needle injections at home has not been fully explored. This study aimed to explore how regular needle injections affect children with RD and their parents in their daily living. Methods This explorative qualitative study used individual interviews and focus groups to ensure a comprehensive investigation of the topic. Children aged 6 to 16 years (n = 7) and their parents (n = 8) were interviewed individually 4 to 6 months after the onset of needle injection treatment. The focus groups included children aged 11 to 17 years (n = 9) and parents (n = 8) with a minimum of 6 months of experience with injection treatment. Data were analyzed using thematic analysis. Results The main themes; “challenges,” “motivational factors,” and “routines” captured experiences and strategies that influenced the continuation of needle injections at home. Many children feared the moment immediately before the needle stick, although they had become accustomed to the pain. Most parents felt insecure about handling needle injections and lacked follow-up from healthcare providers. The children’s experience of treatment effects and self-confidence were essential to maintain motivation for further injections. A number of coping strategies helped children focus away from injection related discomfort, often discovered by chance. Facilitating firm routines and shared responsibility within families helped children develop self-confidence during the procedure. Children and parents struggled to find suitable information on the Internet. Conclusions Children and parents experienced long-term needle injections challenging. They used their own limited resources and cooperated within the families to create routines and to introduce coping strategies necessary to manage and keep up with the procedure. Although the injection itself was not experienced very painful, the discomfort, worries and impact on daily life represented far more than a little needle stick, and thus needs more attention from healthcare providers. |
| first_indexed | 2024-12-20T02:07:02Z |
| format | Article |
| id | doaj.art-94dbf4673f6a47eba0f28d281a364f94 |
| institution | Directory Open Access Journal |
| issn | 1546-0096 |
| language | English |
| last_indexed | 2024-12-20T02:07:02Z |
| publishDate | 2021-01-01 |
| publisher | BMC |
| record_format | Article |
| series | Pediatric Rheumatology Online Journal |
| spelling | doaj.art-94dbf4673f6a47eba0f28d281a364f942022-12-21T19:57:11ZengBMCPediatric Rheumatology Online Journal1546-00962021-01-0119111310.1186/s12969-021-00495-4I don’t want to think about it: a qualitative study of children (6–18 years) with rheumatic diseases and parents’ experiences with regular needle injections at homeKari Sørensen0Helge Skirbekk1Gunnvald Kvarstein2Hilde Wøien3Department of Nursing Science, University of OsloDepartment of Undergraduate Studies Lovisenberg Diaconal University CollegeDivision of Emergencies and Critical Care, Oslo University HospitalDepartment of Nursing Science, University of OsloAbstract Background Overall outcomes of pediatric rheumatic diseases (RD) have improved due to treatment with biologic agents and methotrexate. For many children, this treatment often entails regular needle injections. Pain and fear of needle injections are common in childhood, but how children and parents handle long-term needle injections at home has not been fully explored. This study aimed to explore how regular needle injections affect children with RD and their parents in their daily living. Methods This explorative qualitative study used individual interviews and focus groups to ensure a comprehensive investigation of the topic. Children aged 6 to 16 years (n = 7) and their parents (n = 8) were interviewed individually 4 to 6 months after the onset of needle injection treatment. The focus groups included children aged 11 to 17 years (n = 9) and parents (n = 8) with a minimum of 6 months of experience with injection treatment. Data were analyzed using thematic analysis. Results The main themes; “challenges,” “motivational factors,” and “routines” captured experiences and strategies that influenced the continuation of needle injections at home. Many children feared the moment immediately before the needle stick, although they had become accustomed to the pain. Most parents felt insecure about handling needle injections and lacked follow-up from healthcare providers. The children’s experience of treatment effects and self-confidence were essential to maintain motivation for further injections. A number of coping strategies helped children focus away from injection related discomfort, often discovered by chance. Facilitating firm routines and shared responsibility within families helped children develop self-confidence during the procedure. Children and parents struggled to find suitable information on the Internet. Conclusions Children and parents experienced long-term needle injections challenging. They used their own limited resources and cooperated within the families to create routines and to introduce coping strategies necessary to manage and keep up with the procedure. Although the injection itself was not experienced very painful, the discomfort, worries and impact on daily life represented far more than a little needle stick, and thus needs more attention from healthcare providers.https://doi.org/10.1186/s12969-021-00495-4Needle injectionChildAdolescentNeedle fearRheumatic diseaseHome administration |
| spellingShingle | Kari Sørensen Helge Skirbekk Gunnvald Kvarstein Hilde Wøien I don’t want to think about it: a qualitative study of children (6–18 years) with rheumatic diseases and parents’ experiences with regular needle injections at home Pediatric Rheumatology Online Journal Needle injection Child Adolescent Needle fear Rheumatic disease Home administration |
| title | I don’t want to think about it: a qualitative study of children (6–18 years) with rheumatic diseases and parents’ experiences with regular needle injections at home |
| title_full | I don’t want to think about it: a qualitative study of children (6–18 years) with rheumatic diseases and parents’ experiences with regular needle injections at home |
| title_fullStr | I don’t want to think about it: a qualitative study of children (6–18 years) with rheumatic diseases and parents’ experiences with regular needle injections at home |
| title_full_unstemmed | I don’t want to think about it: a qualitative study of children (6–18 years) with rheumatic diseases and parents’ experiences with regular needle injections at home |
| title_short | I don’t want to think about it: a qualitative study of children (6–18 years) with rheumatic diseases and parents’ experiences with regular needle injections at home |
| title_sort | i don t want to think about it a qualitative study of children 6 18 years with rheumatic diseases and parents experiences with regular needle injections at home |
| topic | Needle injection Child Adolescent Needle fear Rheumatic disease Home administration |
| url | https://doi.org/10.1186/s12969-021-00495-4 |
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