Addressing Disparities in Pediatric Acute Leukemia Diagnosis, Treatment, and Healthcare Access

Addressing Disparities in Pediatric Acute Leukemia Diagnosis, Treatment, and Healthcare Access

Part II: Research Methods and Procedures

Study Design

The research paper will use a mixed-methods design, incorporating quantitative and qualitative designs to comprehensively assess disparities in the diagnosis, treatment, and access to healthcare among pediatric patients with acute Leukemia. The specific mixed method design is convergent model where the study will collect quantitative and qualitative data simultaneously but analyze each type separately and compare the results to make overall conclusions. The study will employ a retrospective cohort for the quantitative aspect that will include analyzing clinical and demographic data from hospital records to determine aspects of disparities based on factors like geographical area, ethnicity and race, socioeconomic statuses, and accessibility to healthcare services. The study will use semi-structured interviews involving parents and caregivers, and healthcare providers to identify the underlying causes and aspects leading to these disparities (Holloway & Galvin, 2023). The selected design, mixed-methods, is appropriate as it enables the research to identify the statistical component of the inequalities and have a comprehensive exploration of the situational barriers and facilitators that impact cancer care in pediatric patients. Using both qualitative and quantitative designs and information improves validity, credibility, and reliability while offering an in-depth understanding of the causes of disparities at individual and system-level in the healthcare sector.

Data Collection Methods and Instruments

Qualitative Data Collection

The study will collect qualitative data and information using semi-structured interviews for healthcare providers involved in oncology care and caregivers of pediatric patients diagnosed with acute leukemia. Some of the healthcare professionals that will be interviewed include oncologists, oncology nurses, social workers, and therapists handling the pediatric patients. The caregivers will include parents, guardians, and significant others close to the diagnosed children (Sharma, 2022). The interview guide (appendix 2) will have open-ended questions focusing on the participants’ experiences in accessing healthcare, treatment barriers, perceptions of inequalities in care access, and communication issues. Each interview will take about 30 minutes and will be recorded based on participants’ consent. The study will take field notes to capture nonverbal cues and contextual aspects. The researcher will transcribe interviews verbatim and securely store them for analysis.

Quantitative Data Collection

The study will extract data from patient records in tertiary referral healthcare facilities that have pediatric oncology units. The researcher will develop a structured data extraction form that entails core variables like patient demographic information, diagnosis, residence, treatment interventions, and clinical outcomes. The form will also entail social determinants of health factors like the level of education of the caregiver, income level, and health insurance coverage because of the costly nature of leukemia treatment (Appendix 1). The medical records will give clear, and reliable information on disparities in diagnosis and treatment while keeping patients’ information confidential and private. Trained research assistants under the supervision of a nurse practitioner and researcher will extract the data to ensure consistency and accuracy. The study will ensure that all data remains anonymous and coded before its analysis to enhance credibility, confidentiality, and privacy of the participants as core ethical considerations.

Sampling

The study will use a purposive sampling approach for both qualitative and quantitative aspects of the research. The sample size for the quantitative part will entail pediatric leukemia cases in the selected facilities between January 2022 and December 2024. The sample size for the interviews will be 20 healthcare providers in different nursing specialties that handle pediatric oncology patients. The inclusion criteria will entail those diagnosed with acute leukemia and who received at least one stage of treatment in the selected facilities. The core exclusion criterion will be cases with incomplete records and those who never received any phase of treatment in the selected referral facilities with pediatric oncology departments.

In the qualitative part, the study will employ purpose and maximum variation sampling to determine research subjects, especially those with diverse experiences and roles in pediatric cancer treatment and care. The sampling approach will ensure that caregivers from urban and rural locations participate in the study, and different specialties among healthcare professionals. The recruitment will continue until the study achieves saturation levels.

Recruitment

The study will collaborate with pediatric oncology units in the selected hospitals to recruit participants. Therefore, the participants will come from the oncology department in the selected facilities or units. The investigator will send invitational letters to healthcare professionals detailing the purpose and voluntary nature of the study (Sharma, 2022). The investigator and the administration will distribute the letters during staff sessions. The team will also use flyers to explain the purpose of study to participants. The research team will work with hospital units to recruit both record data assistants and caregivers. The team will explain the study, request their participation, and if they accept, ensure they sign a consent form. The team will also assure participants that they can participate or decline participation, and any decision will not impact their access to care, professional position, or work.

Research Procedures

After getting ethical approval from the institutional research boards in the respective organizations, the study will continue through the following steps. The initial step would be to develop and pilot test data extraction and interview tools, followed by training the research assistants on various components of the research, including ethics and standardized data collection processes. The second aspect will be data collection for both quantitative and qualitative components (Sharma, 2022). Extraction of data from patient medical records will occur before verification and cleaning to ensure it is complete and accurate. The team will then conduct interviews in private areas for comfort and confidentiality while recording and transcribing them in 2 days to ascertain data integrity. The third component will be data management, where the team will assign numeric codes to participants for anonymity and store digital files in encrypted devices for security and integrity. The fourth aspect will be to link caregiver interviews and patient chart data together through different codes for each participant to protect their privacy

Ethical considerations

The team will seek ethical approval from the institutional review boards of all facilities and other relevant federal and even state agencies and research bodies. The study will comply with biomedical principles of autonomy, beneficence, non-maleficence, and justice (Im et al., 2023). All participants will sign informed consent forms before engaging in the study. The study will be voluntary for all participants, and withdrawal will be allowed at any stage (Houser & Oja, 2025). The study will uphold confidentiality and securely store all recordings and transcripts for at least five years before destroying the materials. The participants will receive an incentive for volunteering to be in the study.

Analysis Plan

Quantitative Analysis

The analysis of quantitative data will entail using SPSS (version 28), while descriptive analysis will provide a summary of demographic and clinical features. The study will employ t-tests to identify associations between core variables, socioeconomic status, and patient outcomes (Holloway et al., 2023). The research will employ multivariate logistic regression models to determine independent predictors of diagnosis delays and disparities. The study will consider a p-value of <0.05 as statistically significant.

Qualitative Analysis

The research team will use NVivo software to thematically analyze the qualitative data. The team will use Braun and Clarke’s six-phase framework to code the themes (Renjith et al., 2021). The framework provides six aspects of thematic analysis that include familiarization, first coding, and development of theme, review, definition, and reporting.

Integrating Findings

The team will integrate the findings through the two methods during interpretation. Consequently, quantitative findings will demonstrate measurable disparities while qualitative insights will explore the underlying factors and lived experience (Lian et al., 2024). Lastly, through triangulation, the study team will enhance validity and offer actionable suggestions to attain equitable access to pediatric oncology care for leukemia as a means to address the inequalities.

References

Holloway, I., & Galvin, K. (2023). Qualitative research in nursing and healthcare. John Wiley

& Sons.

Houser, J., & Oja, K. (2025). Nursing Research: Reading, Using, and Creating Evidence with

            Navigate Advantage Access. Jones & Bartlett Learning.

Im, D., Pyo, J., Lee, H., Jung, H., & Ock, M. (2023). Qualitative research in healthcare: data

Analysis. Journal of Preventive Medicine and Public Health, 56(2), 100-110. DOI:

10.3961/jpmph.22.471.

Lian, J. W., Wei, C. H., Chen, M. Y., & Lin, C. C. (2024). Acute leukemia prediction and

classification using a convolutional neural network and a generative adversarial network.

Applied Soft Computing, 163, 111819. DOI:10.1016/j.asoc.2024.111819

Renjith, V., Yesodharan, R., Noronha, J. A., Ladd, E., & George, A. (2021). Qualitative methods

in health care research. International journal of preventive medicine, 12(1), 20. DOI:

10.4103/ijpvm.IJPVM_321_19

Sharma, S. (2022). Nursing research and statistics-e-book. Elsevier Health Sciences.

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Appendices: Data Collection Tools

Appendix A: Survey Questionnaire

Title: Survey on Factors Influencing Disparities in Pediatric Acute Leukemia Care

Target Respondents: Caregivers/Parents of children diagnosed with acute leukemia

Purpose: This questionnaire gathers information about sociodemographic factors, healthcare access, diagnosis timelines, and treatment experiences affecting children with acute leukemia.

Instructions: Please answer all questions honestly. Responses will be kept strictly confidential and used only for research purposes.

Section 1: Socio-demographic Information

Item	Question	Response Options
1	Child’s age (in years):	_____
2	Sex of child:	☐ Male ☐ Female
3	Place of residence:	☐ Urban ☐ Rural ☐ Peri-urban
4	Parent/Guardian’s highest education level:	☐ No formal education ☐ Primary ☐ Secondary ☐ College/University
5	Approximate monthly household income:	☐ < US $ 10,000 ☐ 10,001–30,000 ☐ 30,001–60,000 ☐ > 60,000
6	Type of health insurance:	☐ Public ☐ Private ☐ None

Section 2: Diagnostic Process

Item	Question	Response Options
7	How long did it take from first symptoms to diagnosis?	☐ <1 month ☐ 1–3 months ☐ 4–6 months ☐ >6 months
8	How many hospitals did you visit before diagnosis?	☐ 1 ☐ 2 ☐ 3+
9	Type of first health facility visited:	☐ Public hospital ☐ Private hospital ☐ Health centre/dispensary ☐ Tribal/cultural
10	Were diagnostic tests (e.g., bone marrow biopsy) easily accessible?	☐ Yes ☐ No
11	If no, what challenges were faced?	☐ Cost ☐ Distance ☐ Equipment shortage ☐ Lack of referral ☐ Other (specify): ______

Section 3: Treatment and Access to Care

Item	Question	Response Options
12	Time from diagnosis to treatment initiation:	☐ <2 weeks ☐ 2–4 weeks ☐ >4 weeks
13	Distance to treatment facility (km):	_____ km
14	Main barriers to treatment completion:	☐ Financial ☐ Transportation ☐ Side effects ☐ Lack of drugs ☐ Family issues
15	Support received during treatment:	☐ Government ☐ NGO ☐ Family/friends ☐ None
16	Overall satisfaction with healthcare access:	☐ Very satisfied ☐ Satisfied ☐ Neutral ☐ Dissatisfied ☐ Very dissatisfied

Section 4: Open-ended

17. In your opinion, how can the health system address disparities among children with acute leukemia and ensure timely diagnosis and treatment of the condition?

____________________________________________________
____________________________________________________

 

 

Appendix B: Semi-Structured Interview Guide

Title: Interview Guide for Healthcare Providers and Caregivers

Purpose: To explore experiences, barriers, and perceptions regarding disparities in pediatric leukemia care.

Estimated Duration: 30 minutes

Mode: In-person or virtual (recorded with consent)

Section 1: Introduction

Greet participant, describe study purpose and ethical compliance.

Obtain informed consent to record and proceed.

Section 2: Background

1. Could you describe your role (for healthcare providers) or relationship to the child (for caregivers)?
2. How long has the treatment journey been?

Section 3: Access and Diagnosis

3. Kindly, what is your experience (or your child’s experience) with the diagnosis?
4. Have you encountered any issues and challenges in the treatment process, from diagnosis to treatment? If any, kindly share.
5. Has the location affected access to care for the patient?

Section 4: Treatment and Care

6. What is your experience in terms of access to treatment facilities, medicines, and specialists?
7. What challenges do you face to attain complete and successful treatment?
8. According to you, what socioeconomic factors (e.g., income, education, insurance) influence care outcomes?

Section 5: Systemic and Policy Factors

9. In your views, what health system or policy issues influence disparities in health care?
10. How can stakeholders and facilities enhance support for families dealing with pediatric leukemia?

Section 6: Closing

11. Is there anything else you would like to share about your experience or recommendations for improvement?

Thank the participant for their time and insights.

Notes for the Researcher

Pilot test the tools before use to ensure clarity and reliability.
Review questions for cultural appropriateness and comprehension level.
Utilize probing questions during interviews to provoke rich, detailed answers.
Record responses securely and make all data is anonymous.

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Describe how you would carry out the project and what steps you have taken to ensure that research materials are appropriate.  Where appropriate use graphics to visually display your procedures and research steps.  Use the worksheet provided in class to guide you in this section.

1. Discuss specifically what you will be doing for the entire project. For example if you are giving a survey, briefly summarize the origin for the survey and relevance for your study purpose.  You should provide a few example questions in this section.
2. Attach a copy of the data collection instruments (e.g., survey, interview guide) as an appendix to the proposal (does not count towards the page limit).
3. If you are going to collect data, specify the type of data, the purpose each data type will serve, and how much data you are collecting.
4. Please include the complete methodology and procedures (recruitment, sampling, data collection, study approach and design, data management, and data analysis plan) of the project, making sure to describe your role. Be specific!
5. Provide a copy of your recruitment material as an appendix to the proposal.
6. If you are proposing an intervention, tell us about it in detail.
7. Did you pretest your data collection materials, if yes how? What did you learn?  With whom and how many people? If you did not pre-test materials, then explain how you will do this.
8. Describe your data analysis plan. Give the types of data you are possibly working with and possible tests or comparisons you will be doing.
9. Detail what ethical considerations you are taking to protect your participants
10. What are the risks and benefits for participating? How are you overcoming any potential risks?
11. Citations should be recent (within the last 10 years). Seminal studies (groundbreaking research that paved the way in the scientific field) is an exception to the time period requirement. Include approximately 3-5 sources.
12. All procedures described in this section should be easy to follow and logical. Think of it as a following a recipe in a cookbook.