PhD Thesis by Diana Mwendwa Marangu, PhD, MBCHB, MMED, MPH
W80/97809/2015
University of Nairobi
ABSTRACT
Background: The World Health Organization End
Tuberculosis (TB) Strategy is geared towards zero deaths, disease and suffering
due to TB, including TB-related stigma, worldwide. Optimal TB contact
investigation (CI) impacts TB prevention, timely case finding and linkage to
care.
However, data on routine TB-CI implementation in high TB burden contexts in low and middle income countries (LMICs) are limited. Furthermore, validated tools to measure stigma in TB patients, in order to examine stigma's role in TB-CI are scarce. Specific operational guidelines and a framework to optimize TB-CI including an instrument that comprehensively measures TB- related stigma among patients in Kenya, a high-burden TB/HIV/multidrug resistant TB and LMIC African context, are envisioned in the national strategic plan but do not currently exist.
However, data on routine TB-CI implementation in high TB burden contexts in low and middle income countries (LMICs) are limited. Furthermore, validated tools to measure stigma in TB patients, in order to examine stigma's role in TB-CI are scarce. Specific operational guidelines and a framework to optimize TB-CI including an instrument that comprehensively measures TB- related stigma among patients in Kenya, a high-burden TB/HIV/multidrug resistant TB and LMIC African context, are envisioned in the national strategic plan but do not currently exist.
Objectives:
To identify and describe patient and health worker perspectives regarding
barriers and facilitators to TB CI and utilize these to inform the design of
TB-CI specific operational guidelines as well as a framework for optimization
of TB-CI and linkage to care in Nairobi County, a high TB/HIV burden urban
setting. Secondly, to evaluate understanding, acceptability and relevance of
the 26-item Stigma Scale for Chronic Illness (SSCI) tool (by Rao et al.) among
Kenyan TB patients and utilize findings to adapt the scale for use in our local
context.
Methods: Between
April 2015 and July 2016, I led a multi-method qualitative study based on
individual interviews with pulmonary TB patients, facility observations and
focus group discussions with health workers (HWs) in 13 health facilities in
Nairobi County, and key informant interviews with governmental and non-governmental
experts in Kenya. Facilitators, barriers and opportunities to optimize TB-CI
were identified through triangulation of data and methodology, synthesized
themes, and study findings informed the design of TB-CI specific operational
guidelines and implementation framework. Findings were analysed based on a
conceptual framework developed apriori of themes at 3 levels: the index TB
patient, health worker (HW) and health system. Additionally, qualitative
research to adapt the Stigma Scale for Chronic Illness (SSCI) tool by Rao et
al. was performed to assess internalized and enacted TB-related stigma in
Nairobi, Kenya. Feedback on the English- and Swahili-translated SSCI tools was
elicited through individual cognitive interviews with 20 pulmonary TB patients
in eleven health facilities in Nairobi County. Difficulties in translation,
differences in meaning, TB contextual relevance, patients' acceptability to the
questions, and issues in tool structure were assessed. The interviews were
audio recorded, transcribed, and translated.
For methodological robustness, I invited two
multilingual research assistants to participate in this work: (i) an
anthropology expert who transcribed all interviews, translated the 20 cognitive
interviews, and independently coded and analysed
themes, and (ii) a Swahili/English translator and communicator, who served as a
tie breaker when we did not reach consensus in our independent data analysis,
and also ensured results presented truly reflected participants' perspectives.
Each of us independently translated the original SSCI (by Rao et al.) into
Swahili and back into English and harmonized the tool for HW administration.
Results: Invitation of TB patients to bring
close contacts by HWs was key for all patient decisions that led to contact
screening. Additional facilitators included the patients' understanding of TB
transmission and desire to avoid contacts suffering from TB; and pro-active
measures by HWs including home-visits and sputum container provision for
unavailable contacts. Barriers reported included long wait-times, non-conducive
clinic hours for contacts who were working or in school, poor community
awareness and TB stigma. Missed opportunities included sub-optimal enquiry and
lack of HW invitation of close contacts presenting at the facility, and these
stemmed from lack of TB-CI specific operational guidelines, documentation tools
and HW training. Stakeholders proposed provision of fast tracked and holistic
health packages to add value for contacts seeking TB screening and synergistic
facility and community health strategies customized to diverse contexts.
Interoperable, efficient and user-friendly computerized health information
systems, sustainable government led funding for infrastructure and an adequate
well-trained health workforce for optimized TB-CI delivery were also proposed.
From the cognitive interviews, most questions
in the Rao-SSCI tool were understood in both English and Swahili, deemed
relevant in the context of TB, and acceptable to TB patients. Key areas of
adaptation of the SSCI included adding questions that address fear of infecting
others and death, HIV stigma, and intimate, family, and workplace relationship
contexts; and beginning with an open question to capture all patients'
concerns. Questions were revised for non- redundancy, specificity, and
optimized sequence.
Conclusion: The key barriers to CI in our setting are
failure by HWs to educate and invite TB patients to bring close contacts for TB
screening, sub-optimal processes and flow of TB patients, HW and community
TB-related stigma, and general health system challenges. With regard to
adaptation of the SSCI by Rao et al for TB-related stigma, the main items that
needed adaptation to make the tool locally acceptable and relevant included
beginning with an open question to capture all patients' concerns; adding
questions that address fear of infecting others and death, HIV stigma, and
intimate, family, and workplace relationship contexts; and eliminating
redundancy. Patient and HW perspectives gained from this study were useful for
the development of a novel context appropriate TB-CI specific operational
guideline and framework for optimized TB-CI.
Implications and Recommendations: The novel operational guideline and framework
developed is proposed for pilot implementation and possible scale up to
optimize TB-CI in the local setting. Secondly, the adapted 8-item SSCI
developed appears to be a useful tool that may be administered by HWs in
English or Swahili to quantify TB-related stigma among TB patients in Kenya.
The implementation tools developed from this study shall be disseminated to the
National TB and Lung Disease Program, and other relevant stakeholders involved
in TB services for consideration for implementation and further evaluation.
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