SSM - Qualitative Research in Health 2 (2022) 100042

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SSM - Qualitative Research in Health

journal homepage: www.journals.elsevier.com/ssm-qualitative-research-in-health

Disadvantage and the experience of treatment for multidrug-resistant

tuberculosis (MDR-TB)
Holly A. Taylor a, b, *, David W. Dowdy c, Alexandra R. Searle d, e, Andrea L. Stennett f, g,
Vadim Dukhanin a, Alice A. Zwerling h, Maria W. Merritt d, i
a
Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, 624 N Broadway, Baltimore, MD, 21205, USA
b
Department of Bioethics, Clinical Center, National Institutes of Health, 10 Center Drive, Bldg. 10, Bethesda, MD, 20892, USA
c
Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, 615 N. Wolfe Street, Baltimore, MD, 21205, USA
d
Department of International Health, Johns Hopkins Bloomberg School of Public Health, 615 N. Wolfe Street, Baltimore, MD, 21205, USA
e
Indiana University Health Methodist Hospital, 1701 N. Senate Avenue, Indianapolis, IN, 46202, USA
f
Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, 624 N Broadway, USA
g
Center for Health Equity Research and Promotion, Pittsburgh VA Medical Center, Pittsburgh, PA, 15240, USA
h
School of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand, Ottawa, ON, K1G 5Z3, Canada
i
Johns Hopkins Berman Institute of Bioethics, 1809 Aslhand Ave, Baltimore MD 21205, USA

A R T I C L E I N F O A B S T R A C T

Keywords: In the present research, we aimed to demonstrate how exploring patients’ treatment experiences may help de-
Disadvantage cision makers better understand and pay attention to social impacts of health interventions. We take multi-drug-
Social Justice resistant tuberculosis (MDR-TB) as a paradigm case of a disease that disproportionately affects people already
Multi-drug Resistant Tuberculosis
living with disadvantage and for which treatment itself is extremely burdensome. We conducted a total of 140 in-
Qualitative Description
South Africa
depth interviews with 53 patients, 56 health care providers, and 31 community members.We found that the
Uganda burdens of MDR-TB treatment described by respondents fell into two categories: those related to managing the
medications (n¼77) and those related to other aspects of completing treatment (n¼52). Respondents also iden-
tified social support (n¼121), access to essential goods and services (n¼74), personal motivation (n¼52), and
patient knowledge about the relationship between treatment completion and potential cure (n¼44) as factors that
may either lighten treatment burdens and facilitate completion or add to treatment burdens and inhibit
completion. When asked specifically about preferences for MDR-TB treatment advances, respondents favored a
shorter course of treatment (n¼52) and fewer pills (n¼51) over fewer side effects (n¼18). According a pattern
analysis applied across the data using the core dimensions of social justice we found that experiencing the side
effects of MDR-TB treatment tends uniformly to erode all three dimensions. Our findings demonstrate how sys-
tematic collection of data about patients’ lived experience can inform decision-making regarding the social im-
pacts of health interventions in at-risk community living with a high-burden of disease from the perspective of
disadvantage.

1. Introduction
Some types of health intervention, in the process of restoring people's
health, can impose major adverse impacts upon social dimensions of their
well-being. Such impacts are particularly worrisome for interventions
intended to address health conditions that disproportionately affect
people already living with disadvantage, in the sense of markedly inse-
cure access to many things that help make a person's life in society go
well (Wolff & de-Shalit, 2007). Ideally, from the standpoint of justice,
decision makers ought to avoid worsening disadvantage in social di-
mensions of well-being when selecting and implementing health inter-
vention programs (Bailey et al., 2015). Adverse social impacts of health
interventions, like isolation and stigma, can harm people's well-being as
much as clinical consequences like drug side effects that worsen hearing
or kidney function. Moreover, such adverse social impacts of health in-
terventions may themselves cause harmful health impacts. Isolation, for

* Corresponding author. 10 Center Drive, MSC 1156, Bldg. 10, Room 1C118, Bethesda, MD, USA.
E-mail addresses: holly.taylor2@nih.gov (H.A. Taylor), ddowdy1@jhmi.edu (D.W. Dowdy), asearle1@iuhealth.org (A.R. Searle), als5298@outlook.com
(A.L. Stennett), vdukhan1@jhu.edu (V. Dukhanin), azwerlin@uottawa.ca (A.A. Zwerling), mmerrit2@jhu.edu (M.W. Merritt).

https://doi.org/10.1016/j.ssmqr.2022.100042
Received 29 July 2021; Received in revised form 13 January 2022; Accepted 25 January 2022
Available online 28 January 2022
2667-3215/© 2022 Published by Elsevier Ltd. This is an open access article under the CC BY-NC-ND IGO license (http://creativecommons.org/licenses/by-nc-nd/3.0/
igo/).
H.A. Taylor et al.
instance, may increase the risk of depression, and stigma may discourage
people from completing treatment. Such amplifying downward spirals of
setbacks across multiple dimensions of well-being, as illustrated here
between health and social dimensions, are signal examples of “‘corrosive
disadvantage’ (namely, disadvantage the presence of which yields
further disadvantage)”, a form of disadvantage that warrants “special
attention” (Wolff & de-Shalit, 2007, p. 10).
In the present research, we aimed to demonstrate how exploring
patients' treatment experiences can help decision makers better under-
stand and pay attention to social impacts of health interventions. We take
multi-drug-resistant tuberculosis (MDR-TB) as a paradigm case of a dis-
ease that disproportionately affects people who are already disadvan-
taged, and for which treatment itself is extremely burdensome. Our
analysis identifies several factors – including medication side effects as
well as contextual factors like social support for patients – that can in-
fluence the impact of MDR-TB treatment regimens upon disadvantage in
social dimensions of well-being. Our focus is on the MDR-TB treatment
experience, as distinct from the experience of living with MDR-TB dis-
ease. We take it as a given that the purpose of MDR-TB treatment is to
restore the health of people living with the disease, with the debilitating
symptoms of the disease itself being relieved once treatment is underway.
Our ultimate goal is to inform decision makers’ comparative evaluations
of treatment regimens to develop, invest in, and implement, so that they
can better protect MDR-TB patients from worsened disadvantage in so-
cial dimensions of well-being as the price of restored health.
1.1. MDR-TB and the experience of MDR-TB treatment: background
Tuberculosis (TB) is an airborne disease and (excepting the COVID-19
pandemic) the leading single-agent infectious cause of mortality world-
wide (WHO, 2020a). While TB is curable, treatment is burdensome,
requiring six months of daily medications. Unfortunately, nearly 5% of
all new cases of TB worldwide are multidrug-resistant (MDR-TB): that is,
resistant to rifampin and isoniazid (both antibiotics), the two most potent
first-line anti-TB drugs (WHO, 2020b)). MDR-TB is concentrated in
lower-income countries, and it disproportionately affects groups who
already bear the heaviest burdens of disadvantage.
Patients undergoing MDR-TB treatment must go through a regimen so
physically and psychologically burdensome that many do not complete
it. Historically, treatment for MDR-TB has required a minimum of five
drugs for at least 18 months, including a daily injection for at least eight
months (“intensive phase”) (Falzon et al., 2011). Common side effects of
these treatments include hearing loss, skin discoloration, and impaired
kidney function (Falzon et al., 2011). In 2019, an all-oral regimen
became the global standard of care for many MDR-TB patients (WHO,
2020b), and injectable agents are now being used less frequently. While
all-oral regimens lasting for as few as 9–12 months are now approved for
select patients with MDR-TB, the agents comprising these newer regi-
mens (for example, bedaquiline, an antibiotic) still have more side effects
than standard first-line treatment (Borisov et al., 2017). Furthermore,
long-course treatment remains widely utilized in practice because many
of the newer oral agents are prohibitively expensive, and many patients
are ineligible for shorter-course therapy.
According to reports published just before and after our data collec-
tion, only 50–66% of patients with MDR-TB who complete treatment
survive (Kendall et al., 2013; Loveday et al., 2013; Yin et al., 2018). Some
patients with MDR-TB do not complete their treatment and die from TB,
and others die despite having completed as many as 20 months of
treatment. According to a meta-analysis of pre-2012 articles, over half of
all patients receiving MDR-TB regimens reported an adverse drug reac-
tion, most commonly gastrointestinal distress (nausea and vomiting),
hearing loss, and psychiatric conditions (Wu et al., 2016). Also of note,
the injectable medications given on a daily basis in the eight-month
intensive phase of the historically recommended regimen (most
commonly kanamycin and amikacin, both antibiotics) are associated
with high rates of kidney toxicity and hearing loss. One large study in
2
SSM - Qualitative Research in Health 2 (2022) 100042
South Africa reported that 44% of all patients required modification of
their drug regimen due to clinically determined hearing loss (Hong et al.,
2020). A recent meta-analysis of published reports concluded that 52% of
patients with MDR-TB suffer from depression (Duko et al., 2020). Taking
multidrug resistant tuberculosis (MDR-TB) as a paradigmatic example of
a disease that disproportionately burdens already-disadvantaged people,
and for which treatment is itself highly burdensome, we conducted
qualitative research to understand the experience of people undergoing
MDR-TB treatment in three sub-Saharan African settings where MDR-TB
is prevalent. While the prevalence of TB is higher in sub-Saharan Africa
than in most other regions of the world owing to the high prevalence of
HIV in this region, the percentage of people with newly diagnosed TB
who have MDR-TB in sub-Saharan Africa (2.6%) is similar to the global
average (3.3%) (WHO, 2020a).
2. Methods
2.1. Overview
Our approach differed from previous qualitative studies on the
experience of MDR-TB treatment (Box 1) in being explicitly informed by
a normative framework of social justice (Bailey et al., 2015; Merritt et al.,
2018). Based on major points of agreement among leading philosophical
theories, the framework emphasizes guarding against impacts likely to
worsen disadvantage within and across three core dimensions of
well-being (Box 2): agency, the ability to lead one's own life and engage in
activities one finds meaningful; association, the ability to have a full range
of desired personal relationships; and respect, the recognition, by others
and oneself, of one's equal moral worth as a person (Bailey et al., 2015,
pp. 631–632).1 Accordingly, we designed our approach to data collection
with the specific research aim of learning what aspects of MDR-TB
treatment might be most prone to worsen patients' disadvantage as
experienced within and across these core dimensions of well-being.
We conducted in-depth interviews among three groups of individuals
most familiar with MDR-TB patients' lived experience: (a) patients being
treated for MDR-TB themselves (including people living with HIV); (b)
healthcare providers (HCPs) who care for such patients; and (c) members
of communities (CM) where people are living with MDR-TB. HCPs and
CMs offered population-based perspectives on experiences of patients
being treated for MDR-TB. We explored with individual members of each
group the ways in which adverse impacts of MDR-TB treatment might
affect patients’ experience of agency, association, and respect.
2.2. Study setting/sampling
Data collection began in 2016 and ended in 2018. Study team
members (at least two per site) spent approximately 1 month at each of
three sites: Cape Town, South Africa (SA) in 2016 (Site SA1), Klerksdorp
1
Merritt et al. (2018: pp. 278–280) detail the relationship of this framework
to theories of justice grounded in multidimensional metrics of wellbeing,
including Nussbaum's capabilities framework (Nussbaum, 2011, pp. 32–34;
Powers & Faden, 2006, p. 16; Wolff & de-Shalit, 2007: 106, 107). To be sure,
there are other dimensions of well-being besides the three that we focus on here.
The framework developed by Bailey et al. (2015), as further explicated by
Merritt et al. (2018), identified agency, association, and respect as the least
controversial other dimensions of well-being for purposes of evaluating health
interventions' impact upon disadvantage. As Merritt et al. (2018: p. 279)
acknowledge, still other dimensions of well-being could also be worthy of
consideration, but in building methodological capacity it makes the most sense
to start with the least controversial dimensions. Following Bailey et al. (2015),
we take agency, association, and respect as least controversial. Those who
consider different dimensions of well-being to be more important than or as
important as agency, association, and respect could conduct qualitative studies
like the present research but examining impacts of health interventions upon
those different dimensions.
H.A. Taylor et al. SSM - Qualitative Research in Health 2 (2022) 100042

Box 1
Display of Qualitative Findings from Other Research

Burdens of Treatment

Side Effects or Adverse Events Bhering et al., 2020; Deshmukh et al., 2015; Horter et al., 2016; Isaakidis et al., 2013; Laxmeshwar et al., 2019; Shringarpure et al.,
2016; Yin et al., 2018
Pain due to Injection Deshmukh et al., 2015; Shringarpure et al., 2016
Pill Burden Laxmeshwar 2019; Shringarpure et al., 2016
Length of Treatment Shringarpure et al., 2016
Experiencing social discrimination or stigma Bhering et al., 2020; Bieh et al., 2017; Isaakidis et al., 2013; Deshmukh et al., 2015; Laxmeshwar et al., 2019; Morris et al., 2013;
during treatment Naidu et al., 2020; Shringarpure et al., 2016; Yin et al., 2018
Isolation Bieh et al., 2017; Morris et al., 2013
Obstacles to Adherence
Financial Constraints Deshmukh etal., 2015; Hutchison et al., 2017; Isaakidis et al., 2013
Poor relationships with clinic staff Deshmukh et al., 2015; Shringarpure et al., 2016
Facilitators to Adherence
Social Support from Family Bhering et al., 2020; Burtscher et al., 2021; Deshmukh et al., 2018; Isaakidis et al., 2013; Shringarpure et al., 2016
Social Support from Clinic Staff Bhering et al., 2020; Burtscher et al., 2021; Deshmukh et al., 2018; Horter et al., 2016; Huque et al., 2020; Laxmeshwar et al., 2019;
Naidu et al., 2020
Knowledge of Disease Deshmukh et al., 2018; Horter et al., 2016
Self Motivation Deshmukh et al. (2018)
Nutritional Support Deshmukh et al. (2018)

Box 2
Core dimensions of well-being besides health [REF Bailey et al., 2015: 631–2]

Agency The ability to lead one's own life and engage in activities one finds meaningful

Association The ability to have a full range of desired personal relationships (e.g., family, friendship, community, civic)
Respect The recognition, by others and oneself, of one's equal moral worth as a person

(near Johannesburg), SA in 2017 (Site SA2), and Kampala, Uganda in
2018 (Site UG) (Table 1). Site visits were conducted in collaboration with
nationally known referral hospitals (Brooklyn Chest Hospital in Cape
Town (SA1), Klerksdorp-Tshepong Hospital in Klerksdorp (SA2), and
Mulago Hospital in Kampala (UG) and local clinics in surrounding dis-
tricts where 1) patients typically go for follow-up appointments or 2) are
clinically observed taking their medications or 3) both. At each site, a
collaborating co-investigator made introductions to the relevant hospital
or clinic staff available to assist the study team with subject recruitment.
At each site our goal was to interview up to 20 patients, 20 HCPs and 20
CMs.
2.3. Participants
2.3.1. Patients
Patient inclusion criteria included: being aged 18 years or older;
being treated for MDR-TB or XDR-TB2 as an inpatient or outpatient; and
having been on MDR-TB or XDR-TB treatment for at least two months but
no longer than one year. Treatment duration criteria were chosen to
maximize understanding of how people experience treatment – as people
on treatment for up to a year are likely to recall the early intensive phase
more vividly than those on treatment longer – and, with the two-month
minimum, to minimize potential risk of infection to the study team.
Eligible patients were identified in collaboration with clinic
2 participants.
XDR-TB (Extensively drug-resistant tuberculosis) refers to TB that is resistant
not only to rifampin and isoniazid, but also to a fluoroquinolone and a second-
line injectable agent – two of the most commonly used drug classes in the
traditional 18–20 month regimens for MDR-TB.
leadership and providers at each site. Providers introduced the study to
their eligible patients and referred interested patients to members of the
study team on site. In some cases, local interpreters, under the supervi-
sion of the study team, contacted patients pre-identified by local pro-
viders as eligible and interested, to provide additional information about
the study and to schedule interviews for those patients who wished to
participate in the study.
2.3.2. Healthcare providers (HCPs)
Eligible HCPs were those having direct experience with MDR-TB
patients (e.g., physician, nurse, or outreach worker). In advance of
each site visit our local co-investigator presented information about the
study to their colleague HCPs. Once on site, we followed up with HCPs
who had been contacted to invite them to participate and schedule an
interview. We were referred to additional HCPs by interviewees and local
staff.
2.3.3. Community members (CMs)
Eligible CMs were individuals aware of MDR-TB treatment and pa-
tients’ lived experiences of MDR-TB treatment in their communities. The
types of CMs ranged from those cured of MDR-TB, to advocates for MDR-
TB patients, to clergy serving congregations affected by MDR-TB. CMs
were identified through our local collaborators and through snowball
sampling after interviews with HCPs and patients. In some cases, our
local collaborators introduced our study and scheduled the interview on
our behalf; in other cases, local collaborators referred potential

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H.A. Taylor et al. SSM - Qualitative Research in Health 2 (2022) 100042

Table 1 Table 2
Site description. Groups and key domains of in-depth interviews.
Site Group Key Domains

SA1 SA2 UG Patients Experiences of MDR-TB disease, & common co-morbidities, in

Location Cape Town, South Near Kampala,
Africa Johannesburg, Uganda
South Africa
Clinic Brooklyn Chest Hospital Klerksdorp- Mulago
Large specialized public Tshepong Hospital
TB hospital dedicated Hospital National
exclusively to MDR-TB MDR-TB referral MDR-TB
and XDR-TB hospital referral
hospital
National Upper-middle Upper-middle Low
income
level
2.4. Interview
The interview guide was based on the study team's knowledge of the
issues and literature available at the time of our interview guide devel-
opment (See Box 1 citations between 2016 and 2018). The study team
developed a distinct interview guide for each participant group (Table 2),
and pilot-tested the guides before the first site visit with a small number
of local and international persons familiar with TB or MDR-TB treatment.
As preferences for novel treatments were a primary area of interest, we
asked both patients and HCPs: if they could choose any aspect of current
MDR-TB treatment to change, what would it be? Respondents were also
asked to indicate whether they would prefer a shorter course, fewer pills,
or fewer side effects (these being the main priorities in contemporary
biomedical research on novel regimens for MDR-TB treatment). We
refined the interview guides iteratively between site visits but retained
core domains for all three site visits to facilitate cross-site comparisons.
2.5. Data collection
Interviews were conducted independently by four study team mem-
bers using standard procedures for qualitative interviews (Rubin &
Rubin, 1995; Weiss, 1994). Interviews were conducted in local languages
(Xhosa, Afrikaans and Luganda) when necessary, with the assistance of
local interpreters, or otherwise in English.
The research was reviewed and approved by the Johns Hopkins
Bloomberg School of Public Health Instituttional Review Board as well as
one or more local IRB(s) for each site. Oral consent was obtained and
documented before each interview.3 All prospective participants whom
the study team approached agreed to complete an interview. At the end
of each interview, we collected relevant demographic data appropriate to
each group for sample characterization. All participants were compen-
sated an equivalent of $15–20 in local currency.
Interviews were audio-recorded, with recordings uploaded daily onto
a secure server, then transcribed by in-country teams for analysis.
Transcripts were reviewed by the study team for accuracy, and any
identifying references (e.g., name of city) were redacted.
2.6. Data analysis
Qualitative analysis was constant, progressive, and iterative (Coffey &
Atkinson, 1996; Crabtree & Miller, 1992). Our approach to analysis was
systematic and included (1) preparation of summaries after each inter-
view; (2) identification of new themes to be explored in subsequent in-
terviews; and (3) daily debriefings among study team members during
on-site data collection (Miles & Huberman, 1994). Two study team
3 (71% female), and 31 CMs (68% female) (Table 3). All patients and CMs,
For one site, the local IRB also required signed consent, which we sought
and obtained for each interview at that site.
relation to agency, respect, and association
Experiences of MDR-TB treatment in relation to agency,
respect, and association
Past experiences with 1st-line TB treatment; compare 1st-line
with MDR-TB treatment
Barriers and facilitators to accessing MDR-TB care and
treatment
Barriers and facilitators to adherence with MDR-TB treatment
Health Care Current standard MDR-TB regimen
Providers Value of MDR-TB regimens for patients in relation to agency,
respect, and association
Level of understanding about MDR-TB among patient
population
Barriers and facilitators for MDR-TB patients to seek diagnosis
Barriers and facilitators for MDR-TB patients to seek care and
treatment
Co-morbidities common among patients with TB in Africa
Community Community perceptions of MDR-TB patients
Members Social and cultural factors that support or hinder patient
motivation to seek diagnosis, care and treatment (agency and
association)
Ways in which MDR-TB patients are accepted or ostracized in
the community (respect)
All Special local or cultural factors not anticipated by our social
justice framework
members read each interview transcript in its entirety to identify key
themes and to develop a preliminary coding scheme of index codes and
sub-codes after the first site visit (Coffey & Atkinson, 1996). We created a
code-book with code definitions and examples from transcripts. We
uploaded transcripts into a text analysis program, NVivo 11 (QSR Inter-
national Pty Ltd, 2015). One researcher coded the text segments; multiple
interviews were double coded by two study team members who then
resolved discrepancies and clarified and refined codes and definitions.
We analyzed computer-reorganized text segments, first descriptively
and then according to themes and sub-themes emerging from the data
(Miles, 1983; Sandelowski 2000, 2010). Once the process of thematic
data analysis was complete, the study team explored the relationship
between the descriptive analysis product and aspects of patients’ expe-
rience by the core dimensions of human well-being of agency, associa-
tion, and respect (Box 2).
3. Findings
This section is organized in two parts: a descriptive summary and an
analytic commentary. The descriptive summary answers our primary
research question: What is MDR-TB treatment like for patients? We
describe first the burden of MDR-TB treatment in general, then specific
factors that can make MDR-TB treatment more or less burdensome for
patients. We conclude the descriptive summary with respondent prefer-
ences for future advances in MDR-TB regimens – that is, changes to the
then-current (at time of data collection) regimen that respondents said
might alleviate burdens of treatment. Following the descriptive narrative
is an analytic commentary, in which we examine our findings about
patients’ MDR-TB treatment experiences from the standpoint of each of
the three dimensions of social justice that informed our data collection:
agency, association, and respect (Box 2).
3.1. Descriptive summary
We conducted a total of 140 in-depth interviews: 39 in Cape Town,
South Africa; 53 in Klerksdorp, South Africa; and 48 in Kampala, Uganda
(Table 3). In total, we interviewed 53 patients (46% female), 56 HCPs
and the vast majority of HCPs, self-identified as either black or of mixed

4
H.A. Taylor et al. SSM - Qualitative Research in Health 2 (2022) 100042

Table 3 Table 4
Interviews. Type of providers.
Site (group) Male Female Total Type of Provider Site
a
Cape Town SA1 SA2 UG Total
Patients 9 8 17
Physician 6 5 5 16
HCPs 5 11 16
Nurse 6 11 9 26
Community Members 0 6 6
Research Counselor 0 2 0 2
Subtotal 14 25 39
Pharmacist 1 1 2 4
Johannesburgb
Outreach Worker or Community Liaison 3 1 4 8
Patients 10 8 18
Total 16 20 20 56
HCPs 6 14 20
Community Members 5 10 15
Subtotal 21 32 53
Kampala hell” (3AP-02). Permanent hearing loss was most frequently mentioned
Patients 7 11 18 by HCPs as the worst side effect (n ¼ 4).4 Respondents in all groups often
HCPs 5 15 20 called out the pain of daily injections, and HCPs and CMs noted that in
Community Members 5 5 10 some cases patients chose to stop treatment rather than receive the daily
Subtotal 17 31 48
Grand Totals 52 88 140
injection for six months.
a
Prior to visit to Cape Town we conducted 4 Pilot interviews (2 HCPs; 2P/ b. Other Aspects of Completing Treatment: What Lightens or Adds to
CMs) via Skype.
b Treatment Burdens
Prior to visit to Johannesburg we conducted 2 pilot interviews (1 HCP; 1 CM)
by Skype.
Respondents identified several factors that, depending on their
presence or absence in a patient's life, may either lighten treatment
race. A subset of patients interviewed were living with HIV as well as
burdens and facilitate completion or add to treatment burdens and
MDR-TB. At the time interviews were conducted, 8 in 10 patients indi-
inhibit completion. These factors were social support (n ¼ 121), access to
cated they were unemployed, living on very limited annual incomes.
essential goods and services (n ¼ 74), personal motivation (n ¼ 52), and
Almost 2 in 10 patients were living without running water or flush toilets.
patient knowledge about the relationship between treatment completion
Of the HCPs interviewed the majority were nurses (26, 46%) or physi-
and potential cure (n ¼ 44).
cians (16, 29%) (Table 4). The average patient interview lasted 38 min
(range 19–60), the average HCP interview 44 min (22–76), and the
average CM interview 50 min (25–74). 3.2. Social support

a. Experience of MDR-TB Treatment: Managing Medications
Almost all respondents (n ¼ 129) described burdens related to MDR-
TB treatment. The burdens of MDR-TB treatment fell into two categories:
those related to managing the medications (n ¼ 77) and those related to
other aspects of completing treatment (n ¼ 52), some respondents
mentioned both. As noted above, the standard MDR-TB treatment at the
time and location of our data collection lasted 20 months, with up to five
medications for the first six to eight months, during which almost all
patients were required to ingest up to 20 pills daily and receive a daily
injection. All the patients we interviewed had to make daily trips to a
clinic site in order to have the ingestion of their medications observed by
a member of the clinic staff. All three groups of respondents across all
three sites, taken together, mentioned over 40 different kinds of side
effects, from allergies, anger, and ataxia (impaired coordination) to
tendonitis, tinnitus, and weight loss or gain. The most commonly
mentioned effects across all three groups were injection pain, joint pain,
nausea, darkened or altered skin pigmentation, and vomiting. Current
patients, and in a few cases former patients interviewed as community
members, mentioned appetite loss or change (n ¼ 14), dizziness (n ¼ 20),
drowsiness or fatigue (n ¼ 16), and physical weakness (n ¼ 10) more
commonly than did HCPs and CMs (n ¼ 1 for appetite disturbance; n ¼ 8
for dizziness; n ¼ 7 for drowsiness or fatigue; n ¼ 0 for physical weak-
ness). HCPs and CMs mentioned hearing loss and hearing impairment (n
¼ 30) more commonly than did patients (n ¼ 8). Vomiting was most
frequently mentioned by patients as the worst effect (n ¼ 6). In the words
of one patient: “… there would be days when I would vomit whatever I
eat, feel sleepy, moody, very weak, very sick and feeling like my life is
4
Some patients mentioned they had started to lose hearing but then it was
caught and reversed; we spoke with only one person who had lost their hearing
because of MDR-TB treatment and had since had cochlear implants. By contrast,
healthcare providers were more likely to have encountered hearing loss because
they typically see a sizable population of patients.
Social support – whether emotional or practical – was the most
commonly mentioned factor making treatment completion easier (n ¼
96) and was more likely to be mentioned by HCPs and CMs than patients.
Lack of support was mentioned by members of all respondent groups as
making treatment completion harder (n ¼ 25).
According to our respondents, emotional support came from a variety
of sources, most commonly from family and clinic staff. Some patients
described experiencing acceptance and companionship in their re-
lationships as they went through MDR-TB diagnosis and treatment. One
patient recalled choosing to accept daily dosing at the clinic, as opposed
to collecting a weekly supply, in order to have daily contact with the
clinic staff.
“We have a bond, me and the sisters [nurses] … Me, I prefer to go
every day. I don't have to go every day, but I prefer to go every day to
the sister. Just to see the sisters' faces you see. She asked me the other
day, why don't you want to take your week pills? I said no, I want to
come and see your faces every day.” (1 MP-09)
HCPs and CMs identified an additional source of emotional support
for patients: patient peers who are doing well on MDR-TB treatment or
have completed treatment. Similarly, some patients reported appreci-
ating, during their inpatient treatment, the mutual understanding and
encouragement they found among other inpatients.
Patients also mentioned receiving practical support from family
members. One patient noted (through an interpreter):
“So he's saying he is lucky that he has the support from his family.
Some of his fellow patients died because of they can't get to the clinic,
they must take a taxi to the clinic, they don't have much support and
the hospital there's no visitation and they don't have friends to sup-
port to take all the tablets. So he is lucky one that gets the support
from the family. (1 HP-01)
By contrast, for other patients, not only was lack of social support
mentioned as making their treatment completion harder, but the fraying

5
H.A. Taylor et al.
of social bonds also resulted from their being on treatment, making it that
much harder to complete. Members of all groups reported patient expe-
riences of disrupted relationships and rejection. As one patient said:
“So basically I had no support from family or friends …. because
friends obviously would ask how I was doing, and when I did explain
how I was, they would just … the fact that I wasn't okay would
overwhelm them so much that they wouldn't know what to say. And
then people would keep quiet for weeks, and then that turned into
months, and then some people have still been quiet since then and it's
been years now. So I lost a lot of my friends. I lost support from almost
everyone.” (1-MP-09)
Eleven respondents (ten patients and one HCP) described patient
experiences of MDR-TB treatment resulting in tension with maintaining
relationships, as in the case of one patient who had to leave a breast-
feeding child at home to undergo inpatient treatment (2-MP-07). Mem-
bers of all groups reported thematically related experiences, including
judgment, blame, interpersonal conflict, abandonment, family members'
being in denial about their close ones' MDR-TB illness, patients' guilt
feelings about having MDR-TB and possibly transmitting it to people
close to them, and family members' frustration with patients’ dependence
on them for help with daily activities.
Related to social support is the quality of the interpersonal interaction
that patients experience with healthcare providers, not least in light of
providers’ professional responsibilities to treat patients with respect and
compassion. Some respondents recounted experiences or observations of
hurtful behavior toward patients by hospital or clinic staff. HCPs posited
that such interactions led patients to turn away from treatment. As one
HCP said:
“This patient won't say anything because when she [the patient] starts
talking at you [the HCP], you scream at her [the patient]. Now they
start fearing us and … some of them, if you give them the pills they
will take it and put it under the pillows.” (2-AH-06)
Patients directly reported experiencing hurtful interactions with
providers in both inpatient and clinic settings, with one patient explicitly
noting that they did not take their medication as a result of such an
encounter (2-MP-03). A physician noted that working in an understaffed,
under-resourced local health system means that providers must care for
large numbers of patients with limited time, and this can manifest itself in
the rude behavior that patients sometimes encounter:
“Sometimes … like us doctors … the work is hectic so sometimes we
forget to be empathetic to them [the patients]. So sometimes if
someone tells me I have not taken my drug today I will be very angry
or scream on the phone …. sometimes we are like robots. I want to
work on you and work on the next patient …. ” (3-HH-10)
3.3. Access to essential goods and services
Lack of access to essential goods and services was often mentioned as
a barrier to treatment completion, more often by HCPs and CMs (n ¼ 55)
than by patients (n ¼ 19).
Insecure access to food was the most common problem mentioned in
this category, and food was often mentioned as an essential good to
which people living in poverty lack access (n ¼ 23).
“The situation, [the provider] will explain it, you have to take the
medication after your meal. … And now the client, when they didn't have
a meal they wouldn't take the medication because they were told don't
take the medication before a meal or after a meal …. Sometimes they will
wait for the day, the client will wait to eat, maybe after lunch or at night
when there's food, then they will start to take the first pill whereas the
client is supposed to take the pill three times a day … Now the reaction of
the treatment doesn't work well because they didn't drink that medica-
tion properly, they didn't eat food according to the needs of the
6
SSM - Qualitative Research in Health 2 (2022) 100042
medication.” (2 MC-03).
By the same token, access to a stable source of food was often
mentioned as facilitating treatment completion (n ¼ 30).
Transport was also mentioned as an essential service that, if not
available, made treatment completion harder (n ¼ 24). In all three study
settings, outpatients were required to leave home to receive their daily
dose of medications. In many cases patients sought treatment at local
clinic sites within walking distance of their homes. Lack of transportation
was noted as a problem by or in reference to patients who lived in more
rural settings and lacked the funds to pay for transportation. Lack of
transportation was also mentioned as a barrier to visits from friends and
family for inpatients at the beginning of their treatment.
3.4. Personal motivation
Patients referred to personal motivation as a facilitator to treatment
completion; HCPs and CMs mentioned both the presence of patients’
personal motivation as a facilitator and its absence as a barrier. This
difference likely reflects the fact that we spoke only with patients actively
engaged in treatment, while HCPs and CMs were familiar with a broader
range of patients. When patients articulated their personal motivation to
complete treatment, it was often in reference to wanting to live or to
looking forward to being well. One patient stated:
“For me, the most motivating factor is in my mind and in my mind
always tells me that – this is your life. For you to get better you have to
take the medicine. So I don't even need any extra incentive to be able to
go and get the medicine. It is in my mind. It is my life. I wake up and I
have to go take the medication.” (3 HP-03).
3.5. Patient knowledge
Some patients said they felt that clinic staff had not told them enough
about their treatment and what to expect during their treatment. Patients
described the lack of knowledge of what to expect as a barrier to treat-
ment completion but did not mention knowledge as a facilitator, while
HCPs and CMs mentioned patient knowledge in both connections.
3.6. Preferences for Novel Treatments
Overall, respondents stated preferences for a shorter course of treat-
ment (n ¼ 52) and fewer pills (n ¼ 51) over fewer side effects (n ¼ 18) as
priorities for novel MDR-TB treatment regimens (Some respondents
mentioned multiple preferences.) Table 5 organizes the data according to
the most common reasons in favor of each preference by respondent
group. Most patients preferred fewer pills (e.g., a number of pills similar
to HIV combination treatment). over a shorter course; most HCPs
preferred the opposite. Some patients expressed a concern that a shorter
course might not be as effective as a longer course; this concern suggests
one reason why patients may have been less likely to endorse a shorter
course. CMs were not directly asked about their preferences; those who
commented were evenly divided on whether they preferred a shorter
course or fewer pills.
More HCPs (n ¼ 11) than patients (n ¼ 5) indicated fewer side effects
as a preference. Raising an issue not necessarily related to any of the
three options – shorter course, fewer pills, or fewer side effects – many
HCPs and some patients indicated that introducing a replacement for the
6-month daily injections of kanamycin should be prioritized (n ¼ 31). Of
note, however, three patients indicated that they actually prefer the in-
jection as it reduces the number of pills they need to ingest. A few HCPs
and patients advocated for offering patients weekly or monthly medi-
cation packets to allow more flexibility in work schedules and/or trav-
eling for work (n ¼ 6).
3.7. Analytic commentary: mapping to core dimensions of well-being
In our approach to the study, including our interview guide and
H.A. Taylor et al.
iterative analysis, we sought to analyze patient experiences using a
normative framework of social justice (Bailey et al., 2015). As described
above under Methods, the framework specifies a norm of justice calling
for health policy decision makers to guard against policy impacts likely to
worsen disadvantage within and across three core dimensions of human
well-being besides health: agency, association, and respect (Box 2). In
what follows, we highlight the ways in which the findings presented
above can be organized accordingly. In the Discussion section, we will
consider how to use data thus organized to flag attributes of MDR-TB
treatment that appear likely to worsen disadvantage within and across
these dimensions of well-being. Our intention is to support decision
makers’ ability to take explicit account of such adverse impacts (Dowdy
et al., 2020).
3.7.1. Agency: the ability to lead one's own life and engage in activities one
finds meaningful
According to our findings, treatment side effects – most notably
depression, moodiness, dizziness, drowsiness, impaired hearing and
vision, numbness, vomiting, and physical weakness – limited patients'
ability to lead their lives and engage in the activities they found mean-
ingful before their MDR-TB diagnosis and initiation of treatment. The
patients' experience of medication side effects curtailed agency in at least
three distinct ways: feeling unable and unwilling to continue to lead one's
life; feeling cut off from the world outside one's immediate experience;
and feeling alienated from oneself and one's life.
Regarding other aspects of treatment, agency was closely implicated
by all four factors: social support, access to essential goods and services,
personal motivation, and patient knowledge. Each of these factors, when
present in a patient's life, can enhance their ability to lead their own life
as a patient, undertaking an organized course of action leading toward
treatment completion and coping with the temporary life disruptions that
treatment imposes. Correspondingly, the absence of each factor can
diminish patients' agency, and the absence of multiple factors might
compound the losses of agency.
3.7.2. Association: the ability to have a full range of desired personal
relationships
We found that treatment side effects, over and above their pervasive
impacts on patients’ agency (including the ability to sustain friendships
and to care for children and family members), can interrupt interpersonal
relationships in more specific ways. The burden of navigating MDR-TB
disease and treatment together with personal obligations can lead to a
desire for seclusion, motivating a degree of self-isolation greater than
what one would usually desire. Hearing loss and mood swings can also
disrupt interpersonal relationships.
Some patients experience inpatient treatment as isolating and detri-
mental to association: they fear long-term family separation, cannot talk
to their friends outside, and encounter interpersonal tensions with other
patients sharing their ward. In other instances, however, inpatients re-
ported being less lonely and isolated compared to when they were at
home.
Table 5
Most Common Reasons in Favor of stated Preferred advance in treatment by Respondent.
Advance in treatment Reasons in Favor of Preferred Advance
Shorter Course Less disruptive to life plans
Less psychological burden
Increase likelihood of completion, better outcomes (some stop when they feel better)
Fewer Pills Less burdensome volume to swallow
Reference to combination treatment offered to those with HIV as a model
Reduce Side Effects Less burdensome physically and emotionally
No Injections Relief from pain and suffering
Flexibility Ability to take pills at home would be less disruptive to life plans
7
SSM - Qualitative Research in Health 2 (2022) 100042
3.7.3. Respect: the recognition, by others and oneself, of one's equal moral
worth as a person
Our findings indicate that specific side effects of some MDR-TB
medications produce visible changes in patients' appearance (like
altered skin pigmentation and texture) and functioning (like numbness in
the feet), that may be met with ridicule and stigmatization. As for other
aspects of treatment, respect appears to be most closely related to social
support, particularly in the quality of patients’ interactions with health-
care providers. Our findings indicate that in some cases patients experi-
ence respect from healthcare providers, and in other cases they
experience disrespect so offensive as to deter them from treatment.
The most striking pattern emerging from our findings is that experi-
encing the side effects of MDR-TB treatment tend to erode agency, as-
sociation, and respect. At the extreme, as we heard indirectly from
providers and community members, the severity of side effects would
sometimes drive patients to stop treatment, in effect sacrificing their
chances for cure and survival to avoid side effects. Even when patients
continue and complete treatment, however, they must do so at risk of
side effects that impose debilitating setbacks in well-being across the
dimensions of agency, association, and respect.
4. Discussion
Our findings confirm, build on, amplify, and complement previous
findings on the burden of MDR-TB treatment on both the health and
social dimensions of well-being. As reviewed in Box 1 above, previous
investigators have found that the MDR-TB treatment is the regimen is
burdensome Patients, HCPs, and CMs in our study all reported on the
variety and intensity of side effects and adverse events experienced while
on MDR-TB treatment. We also confirmed the value of support from
family and clinic staff in facilitating adherence to treatment. In harmony
with our findings on patients’ experiences of disrespect, previous in-
vestigators identified the discrimination experienced by MDR-TB
patients.
Our findings are notable in several ways. First, descriptively, their
breadth and depth make them more comprehensive than previous work.
While previous investigators had identified similar burdens of treatment
as well as obstacles and facilitators, we were able to collect data from
three sites, across three different respondent groups, and generally found
that all patients experience multiple burdens across multiple domains of
experience (Box 1). By contrast, only one previous study included non-
patients (family members) as informants (Burtscher et al., 2021), and
only one included informant from multiple sites (Laxmeshwar et al.,
2019).
An important contextual influence on our data collection was that we
spoke only with patients whose current treatment experience was toler-
able enough both to be ongoing and to allow them to feel good enough to
talk with us. Thus, we cannot directly report on the burdens experienced
either by patients who were encountering the utmost difficulty in
completing their treatment or by those who ended up not completing
their treatment. We can report only indirectly, by way of HCPs and CMs,
on the burdens that such patients were likely experiencing.
Patient HCP Community Total
Member
12 35 8 55
20 21 10 51
5 11 2 18
10 19 2 31
3 3 0 6
H.A. Taylor et al.
Second, analytically, we mapped our findings about MDR-TB treat-
ment experiences onto agency, association, and respect as fundamentally
important dimensions of well-being. Our goal in doing so was to consider
systematically which burdens of MDR-TB treatment were most likely to
further disadvantage an already disadvantaged population. As described
above, doing so promises to advance ongoing efforts to consider disad-
vantage in decision making for novel MDR-TB treatment regimens.
Finally, we purposively asked our informants about their preferences
regarding novel approaches to MDR-TB treatment. These findings com-
plement and amplify our findings with the regard to the burden of the TB
regimen itself. That is, while many informants considered fewer side
effects as a preferred option, the most common responses were to reduce
the pill burden and length of treatment.
We note here an apparent anomaly in our findings. Whereas on the
one hand we found that side effects, when experienced, tend to erode
patients’ agency, respect, and association, on the other hand we found
that in our sample more HCPs than patients preferred fewer side effects
(vs. a shorter course or fewer pills) as a future treatment advance. This
would make sense so far as HCPs encounter a fuller range of patient
treatment experiences – including experiences leading patients to stop
treatment or to be so weakened during treatment that it would have been
wrong to approach them for participation in this in-depth interview
study. We may thereby in effect, have excluded many of the patients who
might have preferred fewer side effects above all for future treatment
advances. Other explanations, however, include the possibility that pa-
tients regard side effects as indicative of effective treatment, or that they
would prefer to reduce the duration of those side effects rather than their
intensity. It may be of value in future research to elicit quantitatively
patient preferences for regimens with different attributes and to consider
trade-offs among different combinations of options. For instance, a
discrete choice experiment could be designed that asks patients to choose
explicitly between shortened regimens with more side effects and longer
regimens with fewer pills per day.
4.1. Implications for considering disadvantage in scaling up novel MDR-TB
regimens
Our findings illuminate the ways in which exposure to various MDR-
TB treatment regimens can worsen patients’ disadvantage, cutting across
agency, association, and respect, with even worse impacts for patients
who are already socially marginalized and who lack reliable access to
food before their MDR-TB diagnosis and during their treatment. For
example, any of a number of side effects might prompt a vicious down-
ward spiral in overall well-being, affecting most severely those who were
already worse off to begin with, and perhaps resulting in the non-
completion of treatment. As noted in the Introduction, in assessing
such treatment impacts, the relevant comparison is between different
approaches to treatment, for instance between a standard and a novel
regimen, or between two novel regimens. The disease itself, if left un-
treated, would have catastrophic impacts on patients. We assume that the
disease process and symptoms would both be addressed by whatever
treatment regimens are under comparison, and the question is which
treatment regimen to implement: our goal is to help inform that decision
from the standpoint of treatment-attributable impacts on disadvantage.
At the extreme, worsened disadvantage resulting in non-completion of
treatment would defeat the health-restoring, and life-saving purpose of
undergoing treatment in the first place.
It is impossible to know at the time of treatment initiation whether a
given patient will experience a given side effect. This means that a patient
starting treatment is at risk of numerous potentially debilitating side
effects. The overall risk to the patient population from exposure to side
effects can serve as one indicator of expected impact upon disadvantage.
More precisely (Dowdy et al., 2020, p. 1), the side-effect profiles of
MDR-TB treatment components can serve as a measurable construct to
which disadvantage is linked, at least in the settings where we collected
data and in other relevantly similar settings. For each policy option under
8
SSM - Qualitative Research in Health 2 (2022) 100042
comparison, analysts could use existing evidence to model the expected
frequency and severity of specific side effects, and the expected overall
volume of side effects. Analysts could then present the expected impli-
cations for disadvantage, in terms of how likely each regimen would be to
worsen disadvantage, and in what ways. Likewise, treatment duration,
pill burden, and similar factors can also serve as quantifiable constructs
when weighing different treatment options.
Decision makers could also consider intervening on some of the four
key factors we found to influence the burden of MDR treatment – social
support, access to essential goods and services, personal motivation, and
patient knowledge – in ways intended to avert and alleviate disadvan-
tage. Regarding the first two factors, our findings suggest that it is
important to consider baseline population levels of social marginaliza-
tion and food insecurity as indicators of prior disadvantage. This
assessment may identify specific courses of action, like offering social
support and assistance with food security, to make it easier for patients to
complete their MDR-TB treatment. Personal motivation is subjective and
private, complicating its relation to disadvantage in ways that are beyond
the scope of the present research. Patient knowledge could be strength-
ened by a concerted effort in the healthcare system to communicate
effectively and to support patients' learning of essential information
regarding their MDR-TB disease and treatment. Our findings suggest that
the systemic absence of such communication and support is a form of
prior disadvantage that will foreseeably curtail patients’ agency, not only
affecting their ability to complete treatment but also increasing their
vulnerability to agency-undermining side effects.
All three settings where we collected data are in sub-Saharan Africa.
Because the explicit consideration of disadvantage – encompassing im-
pacts upon agency, association, and respect – represents a novel and
innovative approach, we believe it is preferable to collect high-quality
data from a small number of sites in a region of interest and keep our
primary results focused on a small number of key settings. Our purpose
here is not to generalize to the experience of all MDR-TB patients
everywhere. Rather, our purpose is to demonstrate how exploring key
domains of patients’ experiences with MDR-TB treatment, as well as
locally relevant data, can inform the explicit consideration of treatment-
attributable worsening of disadvantage in deciding whether and how to
scale up novel MDR-TB regimens in specific settings. Future research
could extend these findings to other regions (e.g., Southeast Asia) that
also experience a high burden of MDR-TB.
4.2. Summary
In summary, this analysis of 144 in-depth interviews of patients,
healthcare providers, and community members affected by MDR-TB
identified several factors that can influence the impact of MDR-TB
treatment regimens upon disadvantage in social dimensions of well-
being. First, aspects of the medications and regimen themselves tend to
erode agency, association, and respect for people undergoing MDR-TB
treatment, thereby worsening disadvantage. Second, four factors that
enable treatment completion when present, and impede it when lacking,
indicate specific areas of concern: social support, access to essential
goods and services, personal motivation, and patient knowledge.
Providing additional assistance to patients in with at least some of these
four factors could help to avert and alleviate treatment-attributable
worsening of disadvantage.
Our findings about patients' experiences of disadvantage in social
dimensions of well-being complement normative claims that such expe-
riences ought to be taken into account along with other outcomes
assessed in evaluating health interventions, particularly for those
addressing conditions that disproportionately burden worse-off pop-
ulations (Bailey et al., 2015). Our findings demonstrate how systematic
collection of data about patients’ lived experience can inform
decision-making regarding health interventions in at-risk, high-burden
communities from the perspective of disadvantage. Adopting this
approach could inform decision makers beyond MDR-TB. HIV and
H.A. Taylor et al.
malaria, for example, are health conditions more common in at-risk
communities living with high burdens of disease. Systematic data
collection efforts similar to ours, from the perspective of disadvantage,
may have already been completed in local or regional settings, available
to inform policy decisions. In absence of data, local and regional efforts
could be launched to collect data to inform interventions. Expansion of
these methods to other contexts and other interventions may raise
awareness of the importance of assessing disadvantage in
decision-making regarding the scale-up of such interventions more
broadly, and help establish tools that allow decision-makers to do so.
Funding
The authors' effort on this publication was supported by Grant num-
ber R01AI114458 from the National Institute of Allergy and Infectious
Diseases of the U.S. National Institutes of Health (NIH). In addition,
HAT's effort was supported in part by the Intramural Program, Clinical
Center, NIH; MWM's effort was supported in part by an award from the
Greenwall Foundation's Making A Difference in Real-World Bioethics
Dilemmas program, and in part by a 2020–2021 Visiting Scholar position
at the NIH Department of Bioethics.
This publication's contents are solely the responsibility of the authors
and do not necessarily represent the official views of the NIH or the
Greenwall Foundation.
Author contributions
Holly Taylor: Conceptualization, Methodology, Investigation, Formal
analysis, Validation, Visualization, Roles/Writing - original draft; Writing
- review & editing. David Dowdy: Conceptualization, Roles/Writing -
original draft; Writing - review & editing. Alexandra Searle: Conceptu-
alization, Project administration, Investigation, Data curation; Formal
analysis, Writing - review & editing, Andrea Stennett: Project adminis-
tration, Investigation, Data curation; Formal analysis, Writing - review &
editing, Vadim Dukhanin: Conceptualization, Writing - review & editing,
Alice Zwerling: Conceptualization, Writing - review & editing Maria
Merritt: Conceptualization, Funding acquisition, Supervision, Investiga-
tion, Formal analysis, Roles/Writing - original draft; Writing - review &
editing.
Declaration of competing Interest
None.
Acknowledgements
We gratefully acknowledge our study participants and local staff; Co-
investigators Achilles Katamba, Neil Martinson and Grant Theron; and
Susan Akello Adukan, Lorato Makgetla, Abram Maubane, Modiehi
Molefe, Katlego Motlhaoleng, Modiehi Rakgokong, Gaobakwe Rampho
and Sister Ruth Wilson for their invaluable assistance. We would also like
to would like to acknowledge Talia Bernhard for her assistance in con-
ducting the literature review and Joe Millum for his substantive review of
the manuscript. We are grateful as well to members of a 2021 reading
group hosted by the NIH Department of Bioethics, and to members of the
2020–21 Greenwall Faculty Scholars Philosophy Works in Progress
group, for their helpful comments on earlier versions. The authors are
solely responsible for any remaining infelicities.
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