The literature on poverty and disability in low and middle-income countries (LMICs) is growing [1–4] but little has been done to examine the association between mental illness, lack of participation resulting from stigma-related processes, and poverty. The mental health literature shows that persons with mental illness in LMICs are among the poorest [5]. In 11 community-based studies conducted in developing-country, significant associations between poverty indicators and common mental disorders were found in all but one study [6]. The literature also demonstrates that persons with mental illness consistently face what Corrigan and Watson [9] call public stigma; stereotypes adopted by a community regarding a specific group and related action against members of the target group through psychosocial processes that result in exclusion [7, 8]. Stereotypes of mental illness are widespread in many societies and “include dangerousness, incompetence, and character weakness” (Corrigan and Watson, [9]: 181). Such negative stereotypes often trigger prejudicial attitudes, which may result in a specific behavior of discrimination such as refusing to hire a person with mental illness or keeping them indoors and away from public view. Stigma-related processes reduce social participation and may worsen the situation of persons with mental illness by excluding them from the labor market.
This paper adopts the premise that persons with mental illness undergo limited participation in family, community and society at large, as a result of stigma-related processes. A better understanding of illness and of the existing social response may establish social factors shaping the prognosis of severe mental illness. This would offer newer avenues for public health interventions to complement biomedical treatment in LMICs [10]. However, it is crucial to grasp how participation is defined. In order to do this, there is an urgent need to pinpoint the concept of participation and identify culturally appropriate measures of individual participation.
In the first section of this paper, we discuss “participation” as a concept and propose the capabilities approach (CA) as a framework for delimiting the term. In the second section, we present the implications of the medical view of participation as a health outcome. In the third section, we detail the methods we used in our systematic review of the literature on participation measures in LMICs. In the fourth section, we present the findings from the review and discuss its implications.
Participation as theory and concept in LMICs
In the field of development, participation as a concept gained momentum through adoption and use in academic institutions, local governments and international organizations like the World Bank [11, 12]. Participation emerged as a suitable concept for use in mainstream issues of empowerment and ownership of policies and interventions by the beneficiaries of development [13], by giving a voice and a role to the poor and marginalized individuals in decisions making processes. In practice, the absence of well-defined principles to operationalize participation in LMICs has yielded poor outcomes. The World Bank and the International Monetary Fund attempts to discuss poverty reduction strategic papers (PRSP) in order to enhance domestic accountability have yielded unsatisfactory results in terms of ensuring participation and ownership of vulnerable groups [14–16].
One of the central issues is that participation can be defined at various levels. Arnstein [17] suggested classifying participation in eight levels across domains of nonparticipation, tokenism and citizen power. In this typology, at the highest level, citizens or ‘actors’ who have power are able to structure policies and programs; at the lowest level, participation is synonymous with consultation or information to maintain the status quo. Pretty [18] proposed a similar typology depicting a spectrum of power shifts from authorities to regular persons. In this view, participation is conceptualized as opportunities for the poor and vulnerable individuals, those without bargaining power, to express a voice and gain some benefits in social interactions with other more privileged individuals in society [19]. In practice, these opportunities for participation are overlooked by many development agencies (United Nations institutions such as the World Bank, International Non Governmental Organizations) and limited to mere consultation. This disconnect of where the term “participation” can be used to describe a variety of processes (that may or may not question power dynamics) explains why many development interventions fail to address economic inequalities and social injustice resulting from the current globalization process [11, 20].
Despite countless critiques [15, 16, 21, 22], participation remains a central principle in the field of development to enhance development effectiveness following the 2005 Paris Declaration on Aid Effectiveness [23]. Advocates argue that participation still has a strong contribution to make on conditions that it is carefully appraised by relinking it to its ideological origins of social transformation and empowerment of the poor and vulnerable [13]. We argue that the capability approach (CA) as a specific framework can be useful in order to rethink development outcomes by focusing on the enhancement of individual well-being understood as expansion of individual capabilities and choices. Within this perspective, human development consists of expanding valuable freedoms where a “set of capabilities” is defined as functionings among opportunities that an individual chooses [24]. The freedom to exercise chosen functionings, doings and beings by an individual is a central dimension of quality of life in the CA [25]. As a result, the CA has been proposed as a framework for quality of life measurement [26, 27]. Within the CA, basic capabilities needed to escape poverty should at the very minimum include the freedom to be healthy, to be educated, to be well nourished, to be well sheltered, freedom to live peaceful lives away from violence, freedom to appear in public without shame and freedom to participate in the community life among others [28]. The concept of “agency” constitutes the capacity of individuals to see themselves as the main decision-makers with the ability to make choices for her/his life. An agent is “someone who acts and brings about change” and is there is empowered to take action (Sen [24], p19). Furthermore, agency embodies the ability of an individual to 1) individually and collectively engage in processes that can lead to social transformation, 2) question the power dynamics that contribute to inequality and 3) improve the well-being of both individuals and the community as a whole [29–31]. Participation in collective action by exercising collective agency, can lead to the expansion of the capability set for the participating members of the group who take action together to secure the expansion of the collective capabilities set [30, 32, 33]. Despite focusing on the individual, the CA recognizes the social space wherein choices are determined [34]. Stewart & Deneulin state that “flourishing individuals generally need and depend on functional families, cooperative and high-trust societies, and social contexts which contribute to the development of individuals who choose“valuable” capabilities” (2002, p. 68). Based on human development and the capabilities approach, there is an emphasis on the power of the person to individually and collectively change the social order through her/his “participation” in the process of social transformation. While participation has been essentially linked to development theory and practice in LMICs, it has been used as a concept to measure individual function in high-income countries (HICs).
Participation as a health outcome in high-income countries
Scale development and validation is based on a clearly defined concept with explicit references to theory or philosophy. In medical practice and research, participation as a measurement outcome in HICs has been linked to the International Classification of Functioning, Disability, and Health (ICF) [35]. The ICF defines participation as “involvement in a life situation” (p.10); this definition has been rapidly adopted and used as a measurement outcome of health [36–38]. However, adoption of the ICF’s participation has produced a myriad of problems with measuring participation [39]. Without a historical premise, a philosophical description, or a theoretical grounding to validate linkages to health, participation is challenging to operationalize [40]. Other critiques include omitting the subjective aspect of meaning, choice and control, not accounting for the experience of persons with a disability and having conflated definitions with other ICF components like capacity, functioning and performance [41–43]. Additionally, literature reviews and meta-analyses have discussed significant overlap between participation and similar concepts like well-being, quality of life, activity, social performance and general physical functioning [44–46]. Yet, despite challenges with an obfuscated definition and conflation with other health-related outcomes, participation continues to be used as a terminal outcome for health. Based on the authors’ experience, participation instruments developed in HICs based on the ICF are being used and modified in LMICs with a range of different cultural settings. However, this practice runs the risk of producing flawed data and a biased estimate of participation since the initial context and purpose of the scale has changed and cultural adaptation can be challenging [47]. A critique of this practice is that participation is viewed in HICs as individualistic functioning separate from collective interaction, while in LMICs, the focus of participation is on engagement of people in society, as well as the collective responsibility to allow for such engagement [46]. A common understanding for measuring participation suggests incorporating engagement of both the individual and the collective in a society. Trani et al. [48] have argued using the example of persons with disability in LMICs that the CA, by focusing on agency, goes beyond the ICF by looking at individuals’ choices, beliefs and preferences within a given economic, social and cultural environment able to provide opportunities for or to create barriers to human development. Yet, in the field of psychiatry, participation of individuals with a mental condition does not encompass agency but is restricted to measuring social functioning. Specific instruments have been used in this field to measure social functioning defined as involvement with other individuals in various social situations: social engagement and communication with peers, intimate relationships, social behavior and skills at home, in recreational activity, at school or at work but without exploring the meaning and subjective experience of these interactions [49–52].
Study aims
This paper has several aims. 1) Identify measures or instruments in a systematic review that evaluate participation and related concepts like quality of life, well-being or social functioning. 2) Evaluate whether the identified measures and instruments assess participation in the context of the capability approach. 3) Highlight scales that may be relevant to evaluating participation of persons with mental illness in LMICs.
In order to concretely identify the scales and measurements that would be contextually relevant for assessing participation in LMICs, we apply a strict definition of what constitutes “participation”, building on concepts discussed above. More precisely, we analyze the documents screened through the review according to two criteria. First, we look for tools that define participation as empowerment or agency, following the CA. Second, we identified tools that assess collective capabilities, going beyond individual functioning, experience or opinion and providing insight on achievements of the collective unit (family, community) or an understanding of the social and cultural context.