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- Chiwanga, Faraja S., et al.
(author)
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An mHealth Intervention to Improve Guardians' Adherence to Children's Follow-Up Care for Acute Lymphoblastic Leukemia in Tanzania (GuardiansCan Project) : Protocol for a Development and Feasibility Study
- 2023
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In: JMIR Research Protocols. - : JMIR Publications. - 1929-0748. ; 12
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Journal article (peer-reviewed)abstract
- Background: Cancer is a leading cause of death during childhood and in low- and middle-income countries survival rates can be as low as 20%. A leading reason for low childhood cancer survival rates in low- and middle-income countries such as Tanzania is treatment abandonment. Contributing factors include poor communication between health care providers and children's guardians, insufficient cancer knowledge, and psychological distress.Objective: Our aim is to respond to Tanzanian guardians' poor adherence to children's follow-up care after treatment for acute lymphoblastic leukemia with the help of mobile health (mHealth) technology. Our goal is to increase guardians' adherence to children's medications and follow-up visits and to decrease their psychological distress.Methods: Following the Medical Research Council framework for developing and evaluating complex interventions, we will undertake the GuardiansCan project in an iterative phased approach to develop an mHealth intervention for subsequent testing. Public contribution activities will be implemented throughout via the establishment of a Guardians Advisory Board consisting of guardians of children with acute lymphoblastic leukemia. We will examine the acceptability, feasibility, and perceived impact of Guardians Advisory Board activities via an impact log and semistructured interviews (study I). In phase 1 (intervention development) we will explore guardians' needs and preferences for the provision of follow-up care reminders, information, and emotional support using focus group discussions and photovoice (study II). We will then co-design the mHealth intervention with guardians, health care professionals, and technology experts using participatory action research (study III). In phase 2 (feasibility), we will examine clinical, methodological, and procedural uncertainties associated with the intervention and study procedures to prepare for the design and conduct of a future definitive randomized controlled trial using a single-arm pre-post mixed methods feasibility study (study IV).Results: Data collection for the GuardiansCan project is anticipated to take 3 years. We plan to commence study I by recruiting Guardians Advisory Board members in the autumn of 2023.Conclusions: By systematically following the intervention development and feasibility phases of the Medical Research Council Framework, and working alongside an advisory board of guardians, we intend to develop an acceptable, culturally appropriate, feasible, and relevant mHealth intervention with the potential to increase guardians' adherence to children's follow-up care after treatment of acute lymphoblastic leukemia, leading to a positive impact on children's health and chances to survive, and reducing distress for guardians.
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| 2. |
- Kohi, Thecla W., et al.
(author)
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Cancer-related concerns and needs among young adults and children on cancer treatment in Tanzania : A qualitative study
- 2019
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In: BMC Cancer. - : Springer Science and Business Media LLC. - 1471-2407. ; 19:82
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Journal article (peer-reviewed)abstract
- Background: Cancer is one of the leading causes of morbidity and mortality worldwide. Seventy percent of deaths of cancer occur in low or middle-income countries, where the resources to provide cancer treatment and care are minimal. Tanzania currently has very inadequate facilities for cancer treatment as there are only five sites, some with limited services; two are in Dar es Salaam and one each in Mwanza, Kilimanjaro and Mbeya that offer cancer treatment. Despite cancer being a prevalent problem in Tanzania, there is a significant shortage of information on the experiences of young people who receive cancer treatment and care. The aim of this study was to explore cancer-related concerns and needs of care and support among young adults and children who are receiving cancer treatment in Dar es Salaam, Tanzania.Methods: Using an explorative, qualitative design, two focus group discussions (FGDs) with young adults (18 to 25 years) and four FGDs with children (9 to 17 years) were held. Data were transcribed into English and analyzed using content analysis.Results: Identified concerns included physical effects, emotional effects, financial impacts, poor early care, and poor treatment. Identified needs included the need for improved care in hospital by the staff, need for community support, financial needs, needs for improved cancer care and treatment in the hospitals, and the need for increased education about cancer. Resilience was identified, particularly around hope or faith, having hope to be healed, and receiving good care from staff.Conclusion: Young adults and children receiving cancer treatment in Tanzania have many needs and concerns. Improvements with regard to the care provided in hospital by the staff, the cancer care and treatment in the hospital, and population-wide education about cancer are necessary to address the identified needs and concerns. Further studies on specific approaches to address the concerns and needs are also warranted.
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| 3. |
- Masika, Golden M., et al.
(author)
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Concerns and Needs of Support Among Guardians of Children on Cancer Treatment in Dar es Salaam : A Qualitative Study
- 2020
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In: Cancer Nursing. - : Wolters Kluwer. - 0162-220X .- 1538-9804. ; 43:6, s. E342-E348
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Journal article (peer-reviewed)abstract
- BACKGROUND: Cancer in children in Tanzania is a concerning health issue, yet there is a shortage of information about the experiences of the guardians of children who receive cancer treatment.OBJECTIVE: To explore concerns and needs of support among guardians of children on cancer treatment in Dar es Salaam, Tanzania.METHOD: Using a qualitative design, 3 focus group discussions were held with 22 guardians of children aged 9 to 17 years. Guardians were recruited from Muhimbili National Hospital, Dar es Salaam, where their children were receiving cancer treatment. Data were analyzed using thematic content analysis.RESULTS: Guardians experienced several issues during the initial stages of their child's cancer treatment, including the process of seeking a diagnosis, and experiences with care at the peripheral (regional) hospitals and national hospital. They also shared what they felt would lessen their difficult experiences. Seven themes emerged in this study: financial concerns, emotional concerns, barriers to cancer care, need for improved cancer care, need for information, need for tangible support, and gratitude and hope.CONCLUSION: Guardians of children with cancer experience challenges during initial stages when seeking a diagnosis and have concerns and needs related to cancer care and treatment.IMPLICATIONS FOR PRACTICE: Improvements are needed regarding care at regional hospitals, the cancer diagnosis, and the recognition of early signs of cancer and quick referral to diagnostic centers, compassionate caring behaviors by healthcare workers, budgetary support from the government to meet the medication supply demands, and meeting stakeholders' support needs.
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| 4. |
- Masika, Golden M, et al.
(author)
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Health-related quality of life and needs of care and support of adult Tanzanians with cancer : a mixed-methods study
- 2012
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In: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 10, s. 133-
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Journal article (peer-reviewed)abstract
- BACKGROUND: Cancer is among the three leading causes of death in low income countries and the highest increase with regard to incidence figures for cancer diseases are found in these countries. This is the first report of the health-related quality of life (HRQOL) and needs of care and support of adult Tanzanians with cancer. METHODS: A mixed-methods design was used. The study was conducted at Ocean Road Cancer Institute (ORCI) in Dar es Salaam, Tanzania. One hundred and one patients with a variety of cancer diagnoses treated and cared for at ORCI answered the Kiswahili version of the EORTC QLQ-C30 investigating HRQOL. Thirty-two of the patients participated in focus group interviews discussing needs of care and support. Data from focus group interviews were analyzed with content analysis. RESULTS: The findings show that the patients, both women and men, report a low quality of life, especially with regard to physical, role, and social function and a high level of symptoms and problems especially with financial difficulties and pain. Financial difficulties are reported to a remarkably high extent by both women and men. The patients, both women and men report least problems with emotional function. A content analysis of the interview data revealed needs of food and water, hygienic needs, emotional needs, spiritual needs, financial needs, and needs of closeness to cancer care and treatment services. CONCLUSION: The high score for pain points out that ORCI is facing severe challenges regarding care and treatment. However, when considering this finding it should be noted that the pain subscale of the Kiswahili version of the EORTC QLQ-C30 did not reach acceptable internal consistency and showed less than satisfactory convergent validity. This also applies to the subscales cognitive function and global health/quality of life. Attention should be drawn to meet the identified needs of Tanzanian cancer patients while hospitalized but also when at home. Increased accessibility of mosquito nets, pads, and pain-killers would help to fulfil some needs.
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