“Alas … my sickness becomes my family’s burden”: A nested qualitative study on the experience of advanced breast cancer patients across the disease trajectory in Indonesia
Introduction: Limited research exists exploring the experience of living with advanced breast cancer in Indonesia. We sought to explore the narratives of women with breast cancer across the illness trajectory to understand their experiences from diagnosis to accessing and undergoing cancer treatment...
| Main Authors: | , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Elsevier
2022
|
| Subjects: | |
| Online Access: | https://repository.ugm.ac.id/278875/1/Prabandari-2_KKMK.pdf |
| _version_ | 1826050338514272256 |
|---|---|
| author | Prabandari, R.A. Yayi Suryo Hartanti, Wika Syafriani, Syafriani Widiastuti, Mestari Witaningrum, Riani Hutajulu, Susanna Hilda Allsop, Matthew John |
| author_facet | Prabandari, R.A. Yayi Suryo Hartanti, Wika Syafriani, Syafriani Widiastuti, Mestari Witaningrum, Riani Hutajulu, Susanna Hilda Allsop, Matthew John |
| author_sort | Prabandari, R.A. Yayi Suryo |
| collection | UGM |
| description | Introduction: Limited research exists exploring the experience of living with advanced breast cancer in Indonesia. We sought to explore the narratives of women with breast cancer across the illness trajectory to understand their experiences from diagnosis to accessing and undergoing cancer treatments to inform the development of cancer care. Methods: A nested, exploratory study adopting a qualitative approach. We conducted in-depth face-to-face interviews with women living with advanced breast cancer in Yogyakarta, Indonesia. We purposively sampled participants by age, education and marital status. All interviews were transcribed verbatim with thematic analysis used to identify, analyse and report patterns and themes within the data. Findings: Four main themes were derived: 1) Early experiences, prior to accessing health care; 2) Navigating the system to access treatment; 3) Enduring chemotherapy and advancing disease, with crucial family support; 4) Seeking normalcy and belief in treatment. From initial symptoms through to undergoing treatments, the experience of participants was punctuated by barriers and challenges.
Discussion: Presentation delays were driven by dismissing initial symptoms, seeking alternative medicines, and
fear of surgery. Access to healthcare required participants to contend with long-distance travel to facilities, tiered
and convoluted referral processes, and adverse effects and financial impact of treatments. Individual determination, belief in God, and the role of families were critical throughout the disease trajectory. Adopting a focus across the disease trajectory facilitated the identification of enduring and persistent challenges to care delivery that can inform targeted development and optimisation of care delivery for women with breast cancer. |
| first_indexed | 2024-03-14T00:02:24Z |
| format | Article |
| id | oai:generic.eprints.org:278875 |
| institution | Universiti Gadjah Mada |
| language | English |
| last_indexed | 2024-03-14T00:02:24Z |
| publishDate | 2022 |
| publisher | Elsevier |
| record_format | dspace |
| spelling | oai:generic.eprints.org:2788752023-11-01T08:44:56Z https://repository.ugm.ac.id/278875/ “Alas … my sickness becomes my family’s burden”: A nested qualitative study on the experience of advanced breast cancer patients across the disease trajectory in Indonesia Prabandari, R.A. Yayi Suryo Hartanti, Wika Syafriani, Syafriani Widiastuti, Mestari Witaningrum, Riani Hutajulu, Susanna Hilda Allsop, Matthew John Clinical Sciences Introduction: Limited research exists exploring the experience of living with advanced breast cancer in Indonesia. We sought to explore the narratives of women with breast cancer across the illness trajectory to understand their experiences from diagnosis to accessing and undergoing cancer treatments to inform the development of cancer care. Methods: A nested, exploratory study adopting a qualitative approach. We conducted in-depth face-to-face interviews with women living with advanced breast cancer in Yogyakarta, Indonesia. We purposively sampled participants by age, education and marital status. All interviews were transcribed verbatim with thematic analysis used to identify, analyse and report patterns and themes within the data. Findings: Four main themes were derived: 1) Early experiences, prior to accessing health care; 2) Navigating the system to access treatment; 3) Enduring chemotherapy and advancing disease, with crucial family support; 4) Seeking normalcy and belief in treatment. From initial symptoms through to undergoing treatments, the experience of participants was punctuated by barriers and challenges. Discussion: Presentation delays were driven by dismissing initial symptoms, seeking alternative medicines, and fear of surgery. Access to healthcare required participants to contend with long-distance travel to facilities, tiered and convoluted referral processes, and adverse effects and financial impact of treatments. Individual determination, belief in God, and the role of families were critical throughout the disease trajectory. Adopting a focus across the disease trajectory facilitated the identification of enduring and persistent challenges to care delivery that can inform targeted development and optimisation of care delivery for women with breast cancer. Elsevier 2022-04-04 Article PeerReviewed application/pdf en https://repository.ugm.ac.id/278875/1/Prabandari-2_KKMK.pdf Prabandari, R.A. Yayi Suryo and Hartanti, Wika and Syafriani, Syafriani and Widiastuti, Mestari and Witaningrum, Riani and Hutajulu, Susanna Hilda and Allsop, Matthew John (2022) “Alas … my sickness becomes my family’s burden”: A nested qualitative study on the experience of advanced breast cancer patients across the disease trajectory in Indonesia. The Breast, 63 (2022). pp. 168-176. ISSN 0960-9776 https://www.journals.elsevier.com/the-breast https://doi.org/10.1016/j.breast.2022.04.001 |
| spellingShingle | Clinical Sciences Prabandari, R.A. Yayi Suryo Hartanti, Wika Syafriani, Syafriani Widiastuti, Mestari Witaningrum, Riani Hutajulu, Susanna Hilda Allsop, Matthew John “Alas … my sickness becomes my family’s burden”: A nested qualitative study on the experience of advanced breast cancer patients across the disease trajectory in Indonesia |
| title | “Alas … my sickness becomes my family’s burden”: A nested qualitative study on the experience of advanced breast cancer patients across the disease trajectory in Indonesia |
| title_full | “Alas … my sickness becomes my family’s burden”: A nested qualitative study on the experience of advanced breast cancer patients across the disease trajectory in Indonesia |
| title_fullStr | “Alas … my sickness becomes my family’s burden”: A nested qualitative study on the experience of advanced breast cancer patients across the disease trajectory in Indonesia |
| title_full_unstemmed | “Alas … my sickness becomes my family’s burden”: A nested qualitative study on the experience of advanced breast cancer patients across the disease trajectory in Indonesia |
| title_short | “Alas … my sickness becomes my family’s burden”: A nested qualitative study on the experience of advanced breast cancer patients across the disease trajectory in Indonesia |
| title_sort | alas my sickness becomes my family s burden a nested qualitative study on the experience of advanced breast cancer patients across the disease trajectory in indonesia |
| topic | Clinical Sciences |
| url | https://repository.ugm.ac.id/278875/1/Prabandari-2_KKMK.pdf |
| work_keys_str_mv | AT prabandarirayayisuryo alasmysicknessbecomesmyfamilysburdenanestedqualitativestudyontheexperienceofadvancedbreastcancerpatientsacrossthediseasetrajectoryinindonesia AT hartantiwika alasmysicknessbecomesmyfamilysburdenanestedqualitativestudyontheexperienceofadvancedbreastcancerpatientsacrossthediseasetrajectoryinindonesia AT syafrianisyafriani alasmysicknessbecomesmyfamilysburdenanestedqualitativestudyontheexperienceofadvancedbreastcancerpatientsacrossthediseasetrajectoryinindonesia AT widiastutimestari alasmysicknessbecomesmyfamilysburdenanestedqualitativestudyontheexperienceofadvancedbreastcancerpatientsacrossthediseasetrajectoryinindonesia AT witaningrumriani alasmysicknessbecomesmyfamilysburdenanestedqualitativestudyontheexperienceofadvancedbreastcancerpatientsacrossthediseasetrajectoryinindonesia AT hutajulususannahilda alasmysicknessbecomesmyfamilysburdenanestedqualitativestudyontheexperienceofadvancedbreastcancerpatientsacrossthediseasetrajectoryinindonesia AT allsopmatthewjohn alasmysicknessbecomesmyfamilysburdenanestedqualitativestudyontheexperienceofadvancedbreastcancerpatientsacrossthediseasetrajectoryinindonesia |