Exploring Unmet Needs from an Online Metastatic Breast Cancer Support Group: A Qualitative Study
<i>Background and Objective</i>: Despite the increasing treatment options for patients with metastatic breast cancer (MBC), unmet needs remain common, especially in low and middle-income countries where resources are limited and MBC patients face many challenges. They often join support...
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| Format: | Article |
| Language: | English |
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MDPI AG
2021-07-01
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| Series: | Medicina |
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| Online Access: | https://www.mdpi.com/1648-9144/57/7/693 |
| _version_ | 1797526672747003904 |
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| author | Aravinthan Kadravello Seng-Beng Tan Gwo-Fuang Ho Ranjit Kaur Cheng-Har Yip |
| author_facet | Aravinthan Kadravello Seng-Beng Tan Gwo-Fuang Ho Ranjit Kaur Cheng-Har Yip |
| author_sort | Aravinthan Kadravello |
| collection | DOAJ |
| description | <i>Background and Objective</i>: Despite the increasing treatment options for patients with metastatic breast cancer (MBC), unmet needs remain common, especially in low and middle-income countries where resources are limited and MBC patients face many challenges. They often join support groups to cope with their unmet needs. Currently, many MBC patients connect with each other via online support group in view of the constant availability of support and rapid information exchange. The objective of this study is to determine the unmet needs of women with MBC from an online support group. <i>Material and Methods</i>: Messages in an online support group of twenty-two MBC patients over a period of three years from August 2016 till August 2019 were thematically analyzed. <i>Results</i>: Three themes were generated, (1) unmet information needs (2) unmet financial needs (3) unmet support needs. Women needed information on side effects of treatment, new treatment options and availability of clinical trials. Although Malaysia has universal health care coverage, access to treatment remains a major challenge. When treatment was not available in the public hospitals, or waiting lists were too long, women were forced to seek treatment in private hospitals, incurring financial catastrophe. Insufficient private insurance and inadequate social security payments force many women to consider stopping treatment. Women felt that they were not getting support from their clinicians in the public sector, who were quick to stop active treatment and advise palliation. On the other hand, clinicians in the private sector advise expensive treatment beyond the financial capability of the patients. Women with families also face the challenge of managing their family and household in addition to coping with their illness. <i>Conclusions</i>: There is a need for healthcare professionals, policy makers, and civil society to better address the needs of MBC patients through patient-centered, multidisciplinary and multi-organizational collaboration. |
| first_indexed | 2024-03-10T09:32:41Z |
| format | Article |
| id | doaj.art-b5ab4927a864423ab7172be3c7fd1022 |
| institution | Directory Open Access Journal |
| issn | 1010-660X 1648-9144 |
| language | English |
| last_indexed | 2024-03-10T09:32:41Z |
| publishDate | 2021-07-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Medicina |
| spelling | doaj.art-b5ab4927a864423ab7172be3c7fd10222023-11-22T04:21:13ZengMDPI AGMedicina1010-660X1648-91442021-07-0157769310.3390/medicina57070693Exploring Unmet Needs from an Online Metastatic Breast Cancer Support Group: A Qualitative StudyAravinthan Kadravello0Seng-Beng Tan1Gwo-Fuang Ho2Ranjit Kaur3Cheng-Har Yip4Breast Cancer Welfare Association Malaysia, Petaling Jaya 46200, MalaysiaFaculty of Medicine, University Malaya Medical Centre, Kuala Lumpur 59100, MalaysiaFaculty of Medicine, University Malaya Medical Centre, Kuala Lumpur 59100, MalaysiaBreast Cancer Welfare Association Malaysia, Petaling Jaya 46200, MalaysiaBreast Centre, Subang Jaya Medical Centre, Subang Jaya 47500, Malaysia<i>Background and Objective</i>: Despite the increasing treatment options for patients with metastatic breast cancer (MBC), unmet needs remain common, especially in low and middle-income countries where resources are limited and MBC patients face many challenges. They often join support groups to cope with their unmet needs. Currently, many MBC patients connect with each other via online support group in view of the constant availability of support and rapid information exchange. The objective of this study is to determine the unmet needs of women with MBC from an online support group. <i>Material and Methods</i>: Messages in an online support group of twenty-two MBC patients over a period of three years from August 2016 till August 2019 were thematically analyzed. <i>Results</i>: Three themes were generated, (1) unmet information needs (2) unmet financial needs (3) unmet support needs. Women needed information on side effects of treatment, new treatment options and availability of clinical trials. Although Malaysia has universal health care coverage, access to treatment remains a major challenge. When treatment was not available in the public hospitals, or waiting lists were too long, women were forced to seek treatment in private hospitals, incurring financial catastrophe. Insufficient private insurance and inadequate social security payments force many women to consider stopping treatment. Women felt that they were not getting support from their clinicians in the public sector, who were quick to stop active treatment and advise palliation. On the other hand, clinicians in the private sector advise expensive treatment beyond the financial capability of the patients. Women with families also face the challenge of managing their family and household in addition to coping with their illness. <i>Conclusions</i>: There is a need for healthcare professionals, policy makers, and civil society to better address the needs of MBC patients through patient-centered, multidisciplinary and multi-organizational collaboration.https://www.mdpi.com/1648-9144/57/7/693unmet needsmetastatic breast cancerlow and middle-income countries |
| spellingShingle | Aravinthan Kadravello Seng-Beng Tan Gwo-Fuang Ho Ranjit Kaur Cheng-Har Yip Exploring Unmet Needs from an Online Metastatic Breast Cancer Support Group: A Qualitative Study Medicina unmet needs metastatic breast cancer low and middle-income countries |
| title | Exploring Unmet Needs from an Online Metastatic Breast Cancer Support Group: A Qualitative Study |
| title_full | Exploring Unmet Needs from an Online Metastatic Breast Cancer Support Group: A Qualitative Study |
| title_fullStr | Exploring Unmet Needs from an Online Metastatic Breast Cancer Support Group: A Qualitative Study |
| title_full_unstemmed | Exploring Unmet Needs from an Online Metastatic Breast Cancer Support Group: A Qualitative Study |
| title_short | Exploring Unmet Needs from an Online Metastatic Breast Cancer Support Group: A Qualitative Study |
| title_sort | exploring unmet needs from an online metastatic breast cancer support group a qualitative study |
| topic | unmet needs metastatic breast cancer low and middle-income countries |
| url | https://www.mdpi.com/1648-9144/57/7/693 |
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