Advancing the understanding of mental health-related structural stigma in the healthcare system: development and piloting of a measurement framework in a low-income setting

Abstract

Background and Aim
Stigma in mental health and its conceptualisation has evolved from referring to it as “spoiled identity” to being understood as a process of labelling, stereotyping, separation, discrimination, and power imbalances of people with lived experiences (PWLEs). These conceptualisations of stigma have given rise to various ways stigma is categorised and operationalised at individual or intra-personal (e.g. self and anticipated stigma), inter-personal (e.g. public stigma), and structural (structural or institutionalised stigma) levels. Although stigma studies have focused on understanding the causes and consequences of stigma at individual and interpersonal levels, very few studies have focused on the structural forms of stigma such that experts have claimed there to be a ‘dramatic shortcoming’ of stigma literature. This may be due to a lack of a clear and uniform understanding of structural stigma and a comprehensive framework to measure it.

Hence, this thesis aims to address the stigma literature gap by exploring the understanding of mental health-related structural stigma, by developing a measurement framework, and by assessing its feasibility and applicability in a healthcare system in a low-resource setting.
Aligned with this aim, the thesis had four specific objectives:
Objective 1: To identify the mental health-related stigma processes through the concept of ‘what matters most’ and understand how structural stigma fits into the stigma processes
Objective 2: To understand the provisions for PWLEs in Nepal’s health and social policies and assess how mental health-related structural stigma and discrimination are manifested within
these policies
Objective 3: To explore the understanding of structural stigma and identify key components for measuring structural stigma in a healthcare system setting
Objective 4: To assess the feasibility and applicability of the structural stigma measurement framework through its implementation in Nepal’s healthcare system

Methods
The thesis followed a mixed-methods approach based on Participatory Action Research (PAR) across its four studies. The methods are aligned with different studies conducted to meet the specific objectives of the thesis.

“Stigma against mental health disorders in Nepal conceptualised with a ‘what matters most’ framework: A scoping review” (Study A) used the scoping review method, where screening was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). “Mental health-related structural stigma and discrimination in health and social policies in Nepal: A scoping review and synthesis” (Study B) also used the scoping review method to screen, extract, and synthesise information from health and social policies in Nepal. “Development of a mental health-related structural stigma measurement framework in the healthcare system setting: A modified Delphi study” (Study C) was conducted using a modified Delphi method consisting of three rounds with experts. Finally, the “Feasibility and applicability of implementing the Framework for Comprehensive Understanding of Structural Stigma in Mental Healthcare System Setting (FOCUS-MHS): A case example of Nepal” (Study D) used qualitative methods such as data mapping and Key Informant Interviews (KIIs) with health system stakeholders. The stakeholders rated the indicators using a visual analogue scale representing a traffic light signal (Red/Amber/Green) to indicate the level of structural stigma in Nepal’s health system.

Findings
The scoping review (Study A) that ‘what matters most’ to the Nepali community are social acceptance, productivity, marriage, social status, and privacy. These moral dimensions of Nepali communities embedded into the structures and norms of society over the years, leading to structural stigma and discrimination, suggesting a complex and interlinked process of stigma
in Nepal.

The policy review (Study B) identified numerous policy gaps, such as the use of stigmatising language, inconsistencies within and between policies on provisions for PWLEs, deviations from international protocols, lack of inclusion of the mental health agenda in larger development policies, and lack of financing mechanisms for implementing policies. Policies restricting the rights of PWLEs to marriage, legal capacity to consent, and taking on administrative and leadership positions highlighted how the ‘what matters most’ and stigma attitudes/beliefs are reflected in these policies.

The Delphi study (Study C) resulted in the development of the ‘FramewOrk for Comprehensive Understanding of Structural stigma in Mental Health System settings (FOCUS-MHS)’ comprising of five interlinked domains: legal frameworks, system infrastructure, health system personnel attitude and practices, quality of care, and PWLE’s experiences. These domains are interlinked with each other as a complex system process, with each domain consisting of at least five indicators to measure the structural stigma in a healthcare system that had the highest consensus.

The feasibility and applicability study (Study D) found the FOCUS-MHS framework useful, but noted challenges in clarity and rating mechanisms, with mid-to-high levels of structural stigma evident in Nepal’s healthcare system.

Discussion and Conclusion
Drawing on the literature and theories about stigma, the findings from the thesis highlight structural stigma as a complex system process with multiple domains interlinked and exerting influences on each other. Structural stigma in health system operates as an interlinked system of discriminatory policies, resource inequities, and stigmatising care practices, leading to poor healthcare experiences of PWLEs. Cultural and contextual factors influence its visibility, particularly in resource-limited health system settings where mental health may be deprioritised. The FOCUS-MHS framework provides a practical, structured approach to measuring and addressing structural stigma and emphasises the importance of involving diverse stakeholders, especially PWLEs.

This thesis advances stigma research by conceptualising mental health-related structural stigma in healthcare-particularly in Low-and-Middle Income Countries (LMICs) and developing the FOCUS-MHS framework to assess its impact within health systems. Findings help inform policies and health system practices to enhance quality of care and service experiences of PWLEs. All four studies incorporated within this thesis are now published and can be accessed below:
1. Study A: “Stigma against mental health disorders in Nepal conceptualised with a ‘what matters most’ framework. (Gurung et al., 2022)
https://doi.org/10.1017/S2045796021000809
2. Study B: “Mental health-related structural stigma and discrimination in health and social policies in Nepal: A scoping review and synthesis” (Gurung et al., 2023)
https://doi.org/10.1017/S2045796023000823
3. Study C: “Development of a mental health-related structural stigma measurement framework in the healthcare system setting: A modified Delphi study” (Gurung et al.,
2025b) https://doi.org/10.1371/journal. pone.0316999
4. Study D: “Feasibility and applicability of implementing the Framework for Comprehensive Understanding of Structural Stigma in Mental Healthcare System Setting (FOCUS-MHS): A case example of Nepal” (Gurung et al., 2025a)
https://doi.org/10.1111/hex.70170

Date of Award	1 Apr 2025
Original language	English
Awarding Institution	King's College London
Supervisor	Graham Thornicroft (Supervisor) & Petra Gronholm (Supervisor)