Presentation
Characterization of Nigerian Breast Cancer Patients’ Work Structures and Processes from Patients’ and Healthcare Providers’ Perspectives Using Interviews
DescriptionBACKGROUND
A notable shift has occurred in medical relationships, placing greater emphasis on the role of patients within the healthcare system. A nascent body of literature in the US captures the experiences of patients following a diagnosis, but this is lacking in Nigeria.
We used Systems Engineering Initiative for Patient Safety (SEIPS 2.0) as a guide for characterizing complex sociotechnical systems comprised of factors, work processes, and outcomes - with the patient and clinicians at the center (Holden et al., 2013). We specifically focused on capturing the interactions in the patient work system from the patients’ and healthcare providers’ (HCPs) perspectives.
The patient work system illustrates the dynamic interplay among person(s) (such as patients, informal caregivers, and HCPs), tasks, tools, and the surrounding environment (Valdez et al., 2015). This environment, encompassing physical, social-cultural, and organizational elements, influences the way tasks are performed and outcomes are achieved. The collaboration and interaction of these factors define the performance processes and results within the system.
The objective of this study was to elicit and characterize the experiences of Nigerian breast cancer patients and HCPs in the patient work system by semi-structured qualitative interviews.
METHODS
The study was approved by the Institutional Review Board (IRB) at our university.
Participants:
We used snowball sampling and social media Facebook, Instagram, LinkedIn, Twitter, and WhatsApp) to recruit Nigerian breast cancer patients and HCPs with experience working with such patients. We developed an interview guide specifically for this study. Questions for both patients and HCPs covered topics such as patient response to diagnosis, barriers and facilitators to care including people and communities within the patient’s network.
Materials:
The following materials and technology were used to conduct the study: 1) Zoom or Rebtel and TapeACall app 2) interview guide 3) SPSS.
Procedure:
The study took place either over Zoom or a recorded phone call. For Zoom, we used the ‘Record’ feature and transcribed using the ‘Live Transcript’ feature. For the recorded phone call, we used the Rebtel and TapeACall app with the transcript feature. A consent form was shared via WhatsApp and verbal consent was obtained. One researcher conducted interviews that lasted 30–60 min. Compensation was an equivalence of $15 gift card. Nigerians located in the U.S received an Amazon gift card via email within one week following participation. Nigerians located in Nigeria received a Naira (Nigerian currency) equivalence based on the exchange rate within one week following participation.
Analysis:
We calculated descriptive statistics for demographics. Interviews yielded notes, transcripts, and audio-recordings. Based on notes and transcripts, one investigator (BN) created a summary for each interview. Using thematic analysis (Braun & Clarke, 2006), we carried out the analysis in the following stages: (a) data review, (b) category coding and data extraction, and (c) synthesis and integration of findings. Specifically, both investigators read all interview summaries. Using inductive and deductive approach, each investigator independently identified codes or topics associated with types and quality of patient support (along with illustrative quotes) and contributed “sticky notes” to a Miro (miro.com) board (an online collaborative whiteboard tool) created for the current project. In a series of analysis meetings, investigators identified and refined codes and developed themes.
RESULTS
Demographics:
We interviewed 18 female patients (29-67 years old) and 6 HCPs (31-42 years old; 3 females). HCPs included primary, specialty, palliative, treatment, diagnostic care.
Majority of the patient participants sample:
- Had highest degree of education completed was a Secondary School education; while majority were Entrepreneur/Self Employed.
- Identified means of healthcare payment as out-of-pocket.
- Married (38.8%), divorced (11.1%) separated (5.6%), single (22.2%), or widowed (22.2%).
- Received care in treatment centers/hospitals located in an urban area (n = 12) and Rural area (n = 6). Treatment centers were general hospitals (n=14), Primary health centers (n=1), Private hospitals (n=2), and Teaching hospitals (n=1).
All HCPs were from urban locations and provided care in treatment centers such as General hospitals (n=2), primary health center (n=1) and privately owned hospitals (n=3).
In the presentation, we will focus on three SEIPS 2.0 work system factors - tasks, tools and the context surrounding the person(s). Below, we provide a description along with illustrative quotes of factors associated with the work system – to be unpacked further in the presentation.
1. Person(s): knowledge plays a role in decision making regarding treatment, “I will lose my hand and I will not be able to do anything I was doing before”.
• Most participants had shared belief that “For me that time, if you ask me, I will not choose chemotherapy because I have heard many things about it. And they did not even explain it to me. They didn’t explain it to me, they didn’t explain the effect, they didn’t explain the function.
HCPs reported a common perspective from experience stating, “everybody attributes cancer to death”, further stating that “the information passed was so wrong. Because it was coming from non-healthcare professionals”.
2. Tasks: patients and HCPs reported the ambiguity around commencement and continuity of care stating,
• “It’s generally crowded, the facilities cannot go round everybody”.
• “I will not go until I am able to have the money and I will continue again”.
• “So, from January of that date till July, I was in denial trying to take all sort of supplement, believe that it soften it and it will dissolve on its own and go naturally”.
HCPs reported how patient care is delivered stating, “you provide things that you work with, down to your syringe, your hand and gloves your disposable gloves. So, if you don't have hand gloves, I can't do anything for you.”
3. Tools: Patient echoed issues with facilities and specialist accessibility stating,
• “we don’t have a functional radiotherapy facility in any of the teaching hospitals in the country”,
• “you have to wait for your own turn, and you may end up sleeping there. And the distance from xxx (name redacted) teaching hospital to my house is about 2 hours to 3 hours’ drive”.
HCPs shared similar concerns stating, “In Warri, there's no oncologist in Warri, so the nearest place for an oncologist is Benin, a teaching hospital in Benin. And so, if you have a private exchange, and then you have to bring in the oncologist to come see the person. There is an additional cost. So, most people look at it, that it’s this additional cost of bringing in the person. Now, for certain reasons, it's difficult. By the time they are told the cost of chemo, some will not be able to afford it.”
DISCUSSION
The findings suggest a complex interplay of informational, emotional, financial, and infrastructural factors contributing to barriers in the patient work system. For instance, patient’s knowledge gaps and misinformation (e.g., beliefs in effectiveness of traditional medicine) play a crucial role in their decision-making regarding treatment. HCPs, highlighted social stigmas and prevalent societal perceptions associating cancer with inevitable death, emphasizing the need for accurate and persuasive messaging regarding breast cancer. Finances (including not just costs for treatment such as chemotherapy, but travel to specialists and medical supplies such as gloves) is a significant barrier to both, seeking and receiving treatment. Further, access to specialists, essential diagnostic tests, and treatment facilities (e.g., absence of functional radiotherapy facilities in teaching hospitals) is another barrier. All of the above challenges contribute to diagnosis and treatment delays with negative patient outcomes. From a human factor’s perspective, our next steps is to identify opportunities for and develop effective breast cancer messaging to support early stage diagnosis.
A notable shift has occurred in medical relationships, placing greater emphasis on the role of patients within the healthcare system. A nascent body of literature in the US captures the experiences of patients following a diagnosis, but this is lacking in Nigeria.
We used Systems Engineering Initiative for Patient Safety (SEIPS 2.0) as a guide for characterizing complex sociotechnical systems comprised of factors, work processes, and outcomes - with the patient and clinicians at the center (Holden et al., 2013). We specifically focused on capturing the interactions in the patient work system from the patients’ and healthcare providers’ (HCPs) perspectives.
The patient work system illustrates the dynamic interplay among person(s) (such as patients, informal caregivers, and HCPs), tasks, tools, and the surrounding environment (Valdez et al., 2015). This environment, encompassing physical, social-cultural, and organizational elements, influences the way tasks are performed and outcomes are achieved. The collaboration and interaction of these factors define the performance processes and results within the system.
The objective of this study was to elicit and characterize the experiences of Nigerian breast cancer patients and HCPs in the patient work system by semi-structured qualitative interviews.
METHODS
The study was approved by the Institutional Review Board (IRB) at our university.
Participants:
We used snowball sampling and social media Facebook, Instagram, LinkedIn, Twitter, and WhatsApp) to recruit Nigerian breast cancer patients and HCPs with experience working with such patients. We developed an interview guide specifically for this study. Questions for both patients and HCPs covered topics such as patient response to diagnosis, barriers and facilitators to care including people and communities within the patient’s network.
Materials:
The following materials and technology were used to conduct the study: 1) Zoom or Rebtel and TapeACall app 2) interview guide 3) SPSS.
Procedure:
The study took place either over Zoom or a recorded phone call. For Zoom, we used the ‘Record’ feature and transcribed using the ‘Live Transcript’ feature. For the recorded phone call, we used the Rebtel and TapeACall app with the transcript feature. A consent form was shared via WhatsApp and verbal consent was obtained. One researcher conducted interviews that lasted 30–60 min. Compensation was an equivalence of $15 gift card. Nigerians located in the U.S received an Amazon gift card via email within one week following participation. Nigerians located in Nigeria received a Naira (Nigerian currency) equivalence based on the exchange rate within one week following participation.
Analysis:
We calculated descriptive statistics for demographics. Interviews yielded notes, transcripts, and audio-recordings. Based on notes and transcripts, one investigator (BN) created a summary for each interview. Using thematic analysis (Braun & Clarke, 2006), we carried out the analysis in the following stages: (a) data review, (b) category coding and data extraction, and (c) synthesis and integration of findings. Specifically, both investigators read all interview summaries. Using inductive and deductive approach, each investigator independently identified codes or topics associated with types and quality of patient support (along with illustrative quotes) and contributed “sticky notes” to a Miro (miro.com) board (an online collaborative whiteboard tool) created for the current project. In a series of analysis meetings, investigators identified and refined codes and developed themes.
RESULTS
Demographics:
We interviewed 18 female patients (29-67 years old) and 6 HCPs (31-42 years old; 3 females). HCPs included primary, specialty, palliative, treatment, diagnostic care.
Majority of the patient participants sample:
- Had highest degree of education completed was a Secondary School education; while majority were Entrepreneur/Self Employed.
- Identified means of healthcare payment as out-of-pocket.
- Married (38.8%), divorced (11.1%) separated (5.6%), single (22.2%), or widowed (22.2%).
- Received care in treatment centers/hospitals located in an urban area (n = 12) and Rural area (n = 6). Treatment centers were general hospitals (n=14), Primary health centers (n=1), Private hospitals (n=2), and Teaching hospitals (n=1).
All HCPs were from urban locations and provided care in treatment centers such as General hospitals (n=2), primary health center (n=1) and privately owned hospitals (n=3).
In the presentation, we will focus on three SEIPS 2.0 work system factors - tasks, tools and the context surrounding the person(s). Below, we provide a description along with illustrative quotes of factors associated with the work system – to be unpacked further in the presentation.
1. Person(s): knowledge plays a role in decision making regarding treatment, “I will lose my hand and I will not be able to do anything I was doing before”.
• Most participants had shared belief that “For me that time, if you ask me, I will not choose chemotherapy because I have heard many things about it. And they did not even explain it to me. They didn’t explain it to me, they didn’t explain the effect, they didn’t explain the function.
HCPs reported a common perspective from experience stating, “everybody attributes cancer to death”, further stating that “the information passed was so wrong. Because it was coming from non-healthcare professionals”.
2. Tasks: patients and HCPs reported the ambiguity around commencement and continuity of care stating,
• “It’s generally crowded, the facilities cannot go round everybody”.
• “I will not go until I am able to have the money and I will continue again”.
• “So, from January of that date till July, I was in denial trying to take all sort of supplement, believe that it soften it and it will dissolve on its own and go naturally”.
HCPs reported how patient care is delivered stating, “you provide things that you work with, down to your syringe, your hand and gloves your disposable gloves. So, if you don't have hand gloves, I can't do anything for you.”
3. Tools: Patient echoed issues with facilities and specialist accessibility stating,
• “we don’t have a functional radiotherapy facility in any of the teaching hospitals in the country”,
• “you have to wait for your own turn, and you may end up sleeping there. And the distance from xxx (name redacted) teaching hospital to my house is about 2 hours to 3 hours’ drive”.
HCPs shared similar concerns stating, “In Warri, there's no oncologist in Warri, so the nearest place for an oncologist is Benin, a teaching hospital in Benin. And so, if you have a private exchange, and then you have to bring in the oncologist to come see the person. There is an additional cost. So, most people look at it, that it’s this additional cost of bringing in the person. Now, for certain reasons, it's difficult. By the time they are told the cost of chemo, some will not be able to afford it.”
DISCUSSION
The findings suggest a complex interplay of informational, emotional, financial, and infrastructural factors contributing to barriers in the patient work system. For instance, patient’s knowledge gaps and misinformation (e.g., beliefs in effectiveness of traditional medicine) play a crucial role in their decision-making regarding treatment. HCPs, highlighted social stigmas and prevalent societal perceptions associating cancer with inevitable death, emphasizing the need for accurate and persuasive messaging regarding breast cancer. Finances (including not just costs for treatment such as chemotherapy, but travel to specialists and medical supplies such as gloves) is a significant barrier to both, seeking and receiving treatment. Further, access to specialists, essential diagnostic tests, and treatment facilities (e.g., absence of functional radiotherapy facilities in teaching hospitals) is another barrier. All of the above challenges contribute to diagnosis and treatment delays with negative patient outcomes. From a human factor’s perspective, our next steps is to identify opportunities for and develop effective breast cancer messaging to support early stage diagnosis.
Event Type
Oral Presentations
TimeTuesday, March 262:15pm - 2:37pm CDT
LocationSalon A-3
Patient Safety Research and Initiatives