Families’ Lived Experience of Raising and Caring for Early-onset Scoliosis: A Pilot Study
Background: Early-onset scoliosis (EOS) presents a complex and time-consuming therapy journey for both patients and their families. This necessitates specialized care to address their specific needs and support their ongoing life adaptation to the disease. Objectives: This study aimed to explore the...
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| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Wolters Kluwer Medknow Publications
2024-07-01
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| Series: | Formosan Journal of Musculoskeletal Disorders |
| Subjects: | |
| Online Access: | https://journals.lww.com/10.4103/fjmd.FJMD-D-23-00017 |
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| _version_ | 1850203125441363968 |
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| author | Hsiao-Hui Chiu Chia-Jung Wu Man-Ling Lin Shiang-Feng Wu Chi-Kuang Feng Yu-Cheng Yao |
| author_facet | Hsiao-Hui Chiu Chia-Jung Wu Man-Ling Lin Shiang-Feng Wu Chi-Kuang Feng Yu-Cheng Yao |
| author_sort | Hsiao-Hui Chiu |
| collection | DOAJ |
| description | Background:
Early-onset scoliosis (EOS) presents a complex and time-consuming therapy journey for both patients and their families. This necessitates specialized care to address their specific needs and support their ongoing life adaptation to the disease.
Objectives:
This study aimed to explore the experiences of families raising children diagnosed with EOS and undergoing spinal surgery. Specifically, we investigated the stages of their adaptation process and identified their challenges and coping strategies.
Materials and Methods:
We employed a purposive sampling method to select children diagnosed with EOS and treated with spinal surgery at a specific children’s orthopedic department in a specific medical center. We conducted a one-by-one in-depth interview based on qualitative research methodology and semi-structured interviews with each participant. Subsequently, we reviewed and analyzed the interview transcripts word by word to identify key themes and patterns.
Results:
We found four distinct stages in the families’ adaptation process: (1) discovering the abnormal body appearance or function of children; (2) seeking help from famous doctors; (3) adapting daily life to the disease and therapy; and (4) training to overcome the suffering caused by the disease.
Conclusions:
When raising and taking care of children with EOS, family members have to face countless challenges and pressure. The family members could learn about EOS, seek professional medical assistance, and provide emotional support for their children to stay positive when they face this disease. |
| format | Article |
| id | doaj-art-2dc7ff2990d94883a1c86f32dee039ad |
| institution | OA Journals |
| issn | 2210-7940 2210-7959 |
| language | English |
| publishDate | 2024-07-01 |
| publisher | Wolters Kluwer Medknow Publications |
| record_format | Article |
| series | Formosan Journal of Musculoskeletal Disorders |
| spelling | doaj-art-2dc7ff2990d94883a1c86f32dee039ad2025-08-20T02:11:35ZengWolters Kluwer Medknow PublicationsFormosan Journal of Musculoskeletal Disorders2210-79402210-79592024-07-0115310410910.4103/fjmd.FJMD-D-23-00017Families’ Lived Experience of Raising and Caring for Early-onset Scoliosis: A Pilot StudyHsiao-Hui ChiuChia-Jung WuMan-Ling LinShiang-Feng WuChi-Kuang FengYu-Cheng YaoBackground: Early-onset scoliosis (EOS) presents a complex and time-consuming therapy journey for both patients and their families. This necessitates specialized care to address their specific needs and support their ongoing life adaptation to the disease. Objectives: This study aimed to explore the experiences of families raising children diagnosed with EOS and undergoing spinal surgery. Specifically, we investigated the stages of their adaptation process and identified their challenges and coping strategies. Materials and Methods: We employed a purposive sampling method to select children diagnosed with EOS and treated with spinal surgery at a specific children’s orthopedic department in a specific medical center. We conducted a one-by-one in-depth interview based on qualitative research methodology and semi-structured interviews with each participant. Subsequently, we reviewed and analyzed the interview transcripts word by word to identify key themes and patterns. Results: We found four distinct stages in the families’ adaptation process: (1) discovering the abnormal body appearance or function of children; (2) seeking help from famous doctors; (3) adapting daily life to the disease and therapy; and (4) training to overcome the suffering caused by the disease. Conclusions: When raising and taking care of children with EOS, family members have to face countless challenges and pressure. The family members could learn about EOS, seek professional medical assistance, and provide emotional support for their children to stay positive when they face this disease.https://journals.lww.com/10.4103/fjmd.FJMD-D-23-00017early onset scoliosislived experiencequalitative |
| spellingShingle | Hsiao-Hui Chiu Chia-Jung Wu Man-Ling Lin Shiang-Feng Wu Chi-Kuang Feng Yu-Cheng Yao Families’ Lived Experience of Raising and Caring for Early-onset Scoliosis: A Pilot Study Formosan Journal of Musculoskeletal Disorders early onset scoliosis lived experience qualitative |
| title | Families’ Lived Experience of Raising and Caring for Early-onset Scoliosis: A Pilot Study |
| title_full | Families’ Lived Experience of Raising and Caring for Early-onset Scoliosis: A Pilot Study |
| title_fullStr | Families’ Lived Experience of Raising and Caring for Early-onset Scoliosis: A Pilot Study |
| title_full_unstemmed | Families’ Lived Experience of Raising and Caring for Early-onset Scoliosis: A Pilot Study |
| title_short | Families’ Lived Experience of Raising and Caring for Early-onset Scoliosis: A Pilot Study |
| title_sort | families lived experience of raising and caring for early onset scoliosis a pilot study |
| topic | early onset scoliosis lived experience qualitative |
| url | https://journals.lww.com/10.4103/fjmd.FJMD-D-23-00017 |
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