Barriers and Facilitators of Use of Hydroxyurea among Children with Sickle Cell Disease: Experiences of Stakeholders in Tanzania
, Hamu J. Mlyuka 1, Fatuma Felix Felician 1, Dorkasi L. Mwakawanga 2, Lulu Chirande 3, David T. Myemba 1, Godfrey Sambayi 1, Ritah F. Mutagonda 1, Wigilya P. Mikomangwa 1, Joyce Ndunguru 3, Agnes Jonathan 3, Paschal Ruggajo 3, Irene Kida Minja 4, Emmanuel Balandya 3, Julie Makani 3 and Nathanael Sirili 5
Round 1
Reviewer 1 Report
Kilonzi M et al used a qualitative approach to investigate the barriers and facilitators in the use of hydroxyurea among children with SCD in Tanzania. They used a purposive sampling strategy and a thematic approach to analyze 17 in depth interviews, 6 SCD experienced medical doctors and 11 parents of children affected by SCD. The paper is well written and the reading is easy and informative, considering all the limits of a qualitative research.
The work is properly set up and carried out, almost all the information related to the methodology was listed accurately following the current guidelines for qualitative research.
Related to the personal information of the parents: median age should be included
Related to the research team: please clarify experience and training of the researchers which analyzed the data.
Please include a table with the questions.
Based on the study design the conclusions stated in the lane 466 (“parents had adequate knowledge of SCD and HU”), lane 483 (knowledge of the medical doctors) and lane 492-493 and the relative discussions (466-475; 483-491 and 492-500) should be removed. It’s not correct with a purposive sampling and a so small number of subjects to discuss these conclusions even if the limits are mentioned by the authors.
Author Response
Reviewer 1
Comment 1: Related to the personal information of the parents: median age should be included
Response: Thank you the suggestion, median age has been added. Line 110.
Comment 2: Related to the research team: please clarify experience and training of the researchers which analyzed the data
Response: The researchers who analysed the data are well experienced with both quantitative and qualitative research approaches. The researchers hold master degree in different field, whereby two researchers completed Master of science by research and publication and one researcher she did a study which employed qualitative approach in her master dissertation. Moreover, the researchers involved in the data analysis have been involved in several projects which employ both qualitative and quantitative research approaches Nevertheless, the whole study was under mentorship of Dr. Nathanael Sirili, who is a guru (expert) in qualitative study with several publications (https://orcid.org/0000-0001-5205-624X). Please for verification of the experience of the researchers involved use the following ORCID; Manase Kilonzi (https://orcid.org/0000-0002-5355-8353), Wigilya P Mikomangwa (https://orcid.org/0000-0002-6385-878X), and Dorkasi Mwakawanga (https://orcid.org/0000-0003-0975-4493).
Comment 3: Please include a table with the questions
Response: The table has been inserted. Line 135.
Comment 4: Based on the study design the conclusions stated in the lane 466 (“parents had adequate knowledge of SCD and HU”), lane 483 (knowledge of the medical doctors) and lane 492-493 and the relative discussions (466-475; 483-491 and 492-500) should be removed. It’s not correct with a purposive sampling and a so small number of subjects to discuss these conclusions even if the limits are mentioned by the authors.
Response: Thank you for the suggestions. The sections have been removed as suggested. The conclusion has been revised accordingly. Line 501 -502
Reviewer 2 Report
The objective of this manuscript is to detect the main factors contributing to the low utilization of HU in sickle cell disease patients in developing countries. This qualitative study, conducted in Tanzania, is based on in-depth interviews conducted and recorded with different actors involved at different levels in the sickle cell disease care, parents of children with sickle cell disease, physicians, representatives of the national health insurance fund. The interviews were recorded, transcribed and analysed thematically.
The study identified positive and negative factors that may have an impact on the low utilisation of HU. These factors may be at the individual or policy level.
The conclusion of this study shows that the main factors highlighted by the interviews are myths about the disease, fear of side effects, limited availability and accessibility (cost) of HU. The interviewees showed a good knowledge of the diseases and HU.
This work contributes to a global analysis of sickle cell disease from a societal point of view, focusing the analysis on the therapeutic aspect from the point of view of patients or parents of sick children, the medical profession and political authorities.
These strengths are the openness initially given to the interviewees, with a semi-structured interview and an adaptation of the questionnaire over time. This qualitative approach is very interesting, even if it brings up the question of the representativeness of the interviewees. The authors were sensitive to this potential bias and selected the respondents with precision, which makes the methodology acceptable. However, the generalisation of the findings to a whole population will require a larger quantitative study. As with any qualitative study, the presentation of the results, and in particular the interviews, remains a difficult exercise. The author was able to synthesise the responses and highlight the main factors contributing to low HU use. However, for some factors, it is difficult for the reader to know whether they were unanimously put forward or only by 10, 20...60% of the respondents.
This study is an essential and necessary starting point for more quantitative studies on a larger scale in order to determine the representativeness of these factors in a larger population. This will support the authors' conclusion and ensure that this first study is representative of the population.
The introduction, method, discussion and conclusion are well constructed and do not call for any particular comment. Similarly, the references are well chosen.
Author Response
Reviewer 2
Comment: The objective of this manuscript is to detect the main factors contributing to the low utilization of HU in sickle cell disease patients in developing countries. This qualitative study, conducted in Tanzania, is based on in-depth interviews conducted and recorded with different actors involved at different levels in the sickle cell disease care, parents of children with sickle cell disease, physicians, representatives of the national health insurance fund. The interviews were recorded, transcribed and analysed thematically.
The study identified positive and negative factors that may have an impact on the low utilization of HU. These factors may be at the individual or policy level.
The conclusion of this study shows that the main factors highlighted by the interviews are myths about the disease, fear of side effects, limited availability and accessibility (cost) of HU. The interviewees showed a good knowledge of the diseases and HU.
This work contributes to a global analysis of sickle cell disease from a societal point of view, focusing the analysis on the therapeutic aspect from the point of view of patients or parents of sick children, the medical profession and political authorities.
These strengths are the openness initially given to the interviewees, with a semi-structured interview and an adaptation of the questionnaire over time. This qualitative approach is very interesting, even if it brings up the question of the representativeness of the interviewees. The authors were sensitive to this potential bias and selected the respondents with precision, which makes the methodology acceptable. However, the generalization of the findings to a whole population will require a larger quantitative study. As with any qualitative study, the presentation of the results, and in particular the interviews, remains a difficult exercise. The author was able to synthesize the responses and highlight the main factors contributing to low HU use. However, for some factors, it is difficult for the reader to know whether they were unanimously put forward or only by 10, 20...60% of the respondents.
This study is an essential and necessary starting point for more quantitative studies on a larger scale in order to determine the representativeness of these factors in a larger population. This will support the authors' conclusion and ensure that this first study is representative of the population.
The introduction, method, discussion and conclusion are well constructed and do not call for any particular comment. Similarly, the references are well chosen.
Response: No comments but we agree with all the remarks. We will look for fund and when available several quantitative studies will be conducted to be able to generalize the findings.
