Self‐Reported Quality of Life and Lived Experiences of Adolescent Cancer Survivors Aged 10–19 in Southwestern Uganda: A Mixed‐Methods Study in a Resource‐Limited Setting
ABSTRACT Background Cancer and its management affect the quality of life (QOL) and lived experiences of adolescent survivors. Aims We describe the QOL and document the lived experiences of adolescent cancer survivors at a tertiary hospital in southwestern Uganda. Methods and Results We conducted a m...
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Wiley
2025-03-01
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| Series: | Cancer Reports |
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| Online Access: | https://doi.org/10.1002/cnr2.70163 |
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| author | Doreen Faith Longes Leevan Tibaijuka Moses Muwanguzi Peter Kalubi Steven Asiimwe Kevin Schwartz Howard Weinstein Elizabeth Najjingo Barnabas Atwiine |
| author_facet | Doreen Faith Longes Leevan Tibaijuka Moses Muwanguzi Peter Kalubi Steven Asiimwe Kevin Schwartz Howard Weinstein Elizabeth Najjingo Barnabas Atwiine |
| author_sort | Doreen Faith Longes |
| collection | DOAJ |
| description | ABSTRACT Background Cancer and its management affect the quality of life (QOL) and lived experiences of adolescent survivors. Aims We describe the QOL and document the lived experiences of adolescent cancer survivors at a tertiary hospital in southwestern Uganda. Methods and Results We conducted a mixed‐methods, cross‐sectional study using descriptive quantitative interviews using the summarized World Health Organization QOL questionnaire and qualitative in‐depth interviews with adolescent cancer survivors at Mbarara Regional Referral Hospital in southwestern Uganda in July and August 2023. We explored participants' perceptions of their health as a percentage of the overall QOL scores and evaluated their lived experiences using an inductive approach. The study obtained ethical approval from the Research and Ethics Committee of the Mbarara University of Science and Technology. A total of 42 adolescents with a mean age of 13.2 (SD ± 2.9) years participated in the study. Twenty‐three (55%) were males, and 24 (57%) had survived hematological malignancies. Participants reported very good (n = 12, 28.6%), good (n = 29, 69.1%), and poor (n = 1, 23%) QOL. Eleven (26.2%) and 30 (71.4%) participants reported they were very satisfied and satisfied with their health, respectively. Participants reported both positive and negative lived experiences. The positive experiences included persistent gratefulness, hope for a cure, and relationship restructuring. The negative experiences included concerns about body appearance, family separation, financial difficulties, and academic challenges. Conclusion The QOL of adolescent cancer survivors in our setting is generally good and is influenced by support from family and the healthcare system. Their lived experiences are varied. Psychosocial services and peer support could improve perceived negative experiences. |
| format | Article |
| id | doaj-art-2ea24847ddea45388600404fdb6a7675 |
| institution | OA Journals |
| issn | 2573-8348 |
| language | English |
| publishDate | 2025-03-01 |
| publisher | Wiley |
| record_format | Article |
| series | Cancer Reports |
| spelling | doaj-art-2ea24847ddea45388600404fdb6a76752025-08-20T01:50:10ZengWileyCancer Reports2573-83482025-03-0183n/an/a10.1002/cnr2.70163Self‐Reported Quality of Life and Lived Experiences of Adolescent Cancer Survivors Aged 10–19 in Southwestern Uganda: A Mixed‐Methods Study in a Resource‐Limited SettingDoreen Faith Longes0Leevan Tibaijuka1Moses Muwanguzi2Peter Kalubi3Steven Asiimwe4Kevin Schwartz5Howard Weinstein6Elizabeth Najjingo7Barnabas Atwiine8Department of Paediatrics and Child Health Mbarara University of Science and Technology Mbarara City UgandaDepartment of Obstetrics and Gynaecology Mbarara University of Science and Technology Mbarara City UgandaDepartment of Psychiatry Mbarara University of Science and Technology Mbarara City UgandaDepartment of Paediatrics and Child Health Mbarara University of Science and Technology Mbarara City UgandaFaculty of Medicine Mbarara University of Science and Technology Mbarara City UgandaMassachusetts General Hospital for Children Boston Massachusetts USAMassachusetts General Hospital for Children Boston Massachusetts USADepartment of Paediatrics and Child Health Mbarara University of Science and Technology Mbarara City UgandaDepartment of Paediatrics and Child Health Mbarara University of Science and Technology Mbarara City UgandaABSTRACT Background Cancer and its management affect the quality of life (QOL) and lived experiences of adolescent survivors. Aims We describe the QOL and document the lived experiences of adolescent cancer survivors at a tertiary hospital in southwestern Uganda. Methods and Results We conducted a mixed‐methods, cross‐sectional study using descriptive quantitative interviews using the summarized World Health Organization QOL questionnaire and qualitative in‐depth interviews with adolescent cancer survivors at Mbarara Regional Referral Hospital in southwestern Uganda in July and August 2023. We explored participants' perceptions of their health as a percentage of the overall QOL scores and evaluated their lived experiences using an inductive approach. The study obtained ethical approval from the Research and Ethics Committee of the Mbarara University of Science and Technology. A total of 42 adolescents with a mean age of 13.2 (SD ± 2.9) years participated in the study. Twenty‐three (55%) were males, and 24 (57%) had survived hematological malignancies. Participants reported very good (n = 12, 28.6%), good (n = 29, 69.1%), and poor (n = 1, 23%) QOL. Eleven (26.2%) and 30 (71.4%) participants reported they were very satisfied and satisfied with their health, respectively. Participants reported both positive and negative lived experiences. The positive experiences included persistent gratefulness, hope for a cure, and relationship restructuring. The negative experiences included concerns about body appearance, family separation, financial difficulties, and academic challenges. Conclusion The QOL of adolescent cancer survivors in our setting is generally good and is influenced by support from family and the healthcare system. Their lived experiences are varied. Psychosocial services and peer support could improve perceived negative experiences.https://doi.org/10.1002/cnr2.70163adolescentscancer survivorslived experiencesquality of lifeUganda |
| spellingShingle | Doreen Faith Longes Leevan Tibaijuka Moses Muwanguzi Peter Kalubi Steven Asiimwe Kevin Schwartz Howard Weinstein Elizabeth Najjingo Barnabas Atwiine Self‐Reported Quality of Life and Lived Experiences of Adolescent Cancer Survivors Aged 10–19 in Southwestern Uganda: A Mixed‐Methods Study in a Resource‐Limited Setting Cancer Reports adolescents cancer survivors lived experiences quality of life Uganda |
| title | Self‐Reported Quality of Life and Lived Experiences of Adolescent Cancer Survivors Aged 10–19 in Southwestern Uganda: A Mixed‐Methods Study in a Resource‐Limited Setting |
| title_full | Self‐Reported Quality of Life and Lived Experiences of Adolescent Cancer Survivors Aged 10–19 in Southwestern Uganda: A Mixed‐Methods Study in a Resource‐Limited Setting |
| title_fullStr | Self‐Reported Quality of Life and Lived Experiences of Adolescent Cancer Survivors Aged 10–19 in Southwestern Uganda: A Mixed‐Methods Study in a Resource‐Limited Setting |
| title_full_unstemmed | Self‐Reported Quality of Life and Lived Experiences of Adolescent Cancer Survivors Aged 10–19 in Southwestern Uganda: A Mixed‐Methods Study in a Resource‐Limited Setting |
| title_short | Self‐Reported Quality of Life and Lived Experiences of Adolescent Cancer Survivors Aged 10–19 in Southwestern Uganda: A Mixed‐Methods Study in a Resource‐Limited Setting |
| title_sort | self reported quality of life and lived experiences of adolescent cancer survivors aged 10 19 in southwestern uganda a mixed methods study in a resource limited setting |
| topic | adolescents cancer survivors lived experiences quality of life Uganda |
| url | https://doi.org/10.1002/cnr2.70163 |
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