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Abstract
Health-related stigma plays a significant role in the burden of various health conditions such as neglected tropical diseases and mental illnesses, and undermines successful health outcomes. Stigmatised individuals can face lifelong socioeconomic consequences because of their condition. It is broadly recognised that culturally salient factors interact with the way stigma is expressed in different local contexts. This study aimed to capture cultural capabilities that shape health-related stigma in Indonesia, using the ‘what matters most’ (WMM) stigma framework. In this qualitative research, 15 in-depth interviews with experts in the field of Indonesian culture and health studies were conducted, followed by a group discussion. Data were collected between April and September 2021, and analysed using thematic content analysis. The analysis shows that cultural values such as communal participation in local networks and the ‘shame culture’ shapes experiences of stigma in Indonesia. Moreover, the participants explained that achieving full standing in the Indonesian context meant contributing to the collective interest and maintaining the family reputation. Personhood is also related to socially defined gender roles. For example, community participation was often influenced by patriarchal values, which lead to differences in access to life opportunities, while recognition in the family was often connected to complying with gender roles. This study contributes to research on the cultural shaping of health-related stigma involving the WMM framework in the Indonesian context. Future research should focus on the perspectives of those who are affected by stigmatised conditions and on integrating these insights in the assessment and reduction of health-related stigma.
- Public Health
- Qualitative study
Data availability statement
No data are available.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
There is increasing attention to include moral experience and cultural context to better understand health-related stigma in different cultures.
Many efforts have been done to reduce stigma related to diseases such as leprosy, neglected tropical diseases and mental illnesses.
WHAT THIS STUDY ADDS
This research offers comprehensive and context-specific insights into Indonesian culture and health-related stigma, highlighting the importance of community participation and family recognition for social acceptance.
We found that expectations within the community and the family were different for men and women.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
The findings of this study underscore the need to incorporate these cultural capabilities into the design and assessment of health-related stigma reduction interventions.
Introduction
Health-related stigma contributes greatly to the burden of disease for affected individuals, driven by various factors, including negative attitudes, fear and a lack of knowledge regarding the condition.1 2 Health-related stigma undermines access to diagnosis, treatment and successful health outcomes,3 and can lead to lifelong health and socioeconomic consequences.4 5
Yang et al posit that health-related stigma is shaped by moral experience, denoting the daily interactions and everyday engagements, also referred to as cultural capabilities, that are perceived to ‘matter most’ and enable recognition of an individual as a ‘full or whole person’ to members of a local world, signifying ‘personhood’.6 As such, ‘what matters most’ (WMM) is conceptualised as a cultural mechanism denoting meaningful community participation and locally shaped meanings, outcomes and experiences of stigma.6–8 Moral experience is thus suggested to intensify or protect against stigma via one’s ability or inability to participate meaningfully in what defines personhood in their community.8 The literature offers various and debated definitions of ‘personhood’. In this paper, we define ‘personhood’ as the condition of being a social, physical and conscious individual and as a notion required to acknowledge existence in society.6 8 9 Personhood is constantly shaped and negotiated within specific contexts and periods, influenced by different circumstances and social connections.10
Indonesia is a vast and culturally rich country, which is undergoing various socioeconomic and epidemiological transitions. With a population of over 276 million and more than 300 distinct ethnic and linguistic groups, the socioeconomic and epidemiological transitions also pose several challenges.11 12 For example, patriarchy and gender inequality are deeply rooted in society, influenced by certain social and religious norms.13 As men are often seen as the head of the family, autonomy and decision-making are perceived as their responsibility, which directly affects decisions regarding family members’ health.14,15 Along with the fact that certain stigmatised conditions are still relatively prevalent, Indonesia is a relevant context in which to examine how cultural capabilities shape stigma.
Previous research conducted in Indonesia found that social exclusion and rejection (eg, confinement (pasung))16 17; separation of personal belongings18 or forced relocation19 was associated with neglected tropical diseases (NTDs), HIV or serious mental illness.18 20–22 Stigmatised individuals in Indonesia are found to be more likely to face long-term social, educational and occupational impairment than those who are not stigmatised, which exacerbates the negative consequences of the condition.4 Further, several studies have highlighted that culturally defined gender roles affect experiences of stigma.14 23 24 While several studies have focused on stigma related to NTDs or mental illness in Indonesia,14 16 21 insights into how culture shapes health-related stigma experiences in Indonesia are lacking. Moreover, the ‘WMM’ theory has, to the best of our knowledge, not yet been applied in the Indonesian context. Therefore, gathering perspectives from a multidisciplinary group of experts could provide initial insights into which cultural capabilities shape stigma towards those affected. Interdisciplinary experts are well-suited for this inquiry, since they participate in the daily activities that ‘matter most’ in Indonesia and can reflect on its cultural aspects within their work.
This study aims to increase our understanding of culturally salient capabilities shaping health-related stigma in Indonesia by exploring the perspectives of local experts in the field of culture and health studies on cultural capabilities that intensify or mitigate health-related stigma. This knowledge could be valuable for assessing health-related stigma, developing stigma-reduction interventions and enriching the WMM theoretical framework within the Indonesian context.
Methods
This qualitative study on ‘WMM’ and health-related stigma in Indonesia used in-depth interviews and a group discussion to explore the perspectives of scholars who interact with health-related stigma in various Indonesian contexts. This study is part of a larger research project and precedes a study in which the perspectives of persons affected by stigmatised conditions are ascertained (Sopamena et al, in preparation).
Context of the study
The collectivist nature of Indonesian culture plays a significant role in individuals’ daily lives, relationships and beliefs.25 26 Collectivism has been strongly influenced by sociocultural beliefs, norms and values towards community members’ attitudes and forms of behaviour.26 27 Social norms are also heavily influenced by religious and local customs (adat)28 and Indonesia’s culture is interwoven with various religious aspects.12 External influences from other cultures, like Hinduism and Buddhism from India, started to pervade Indonesia from the beginning of the first century. Islam gradually spread among the population through Arabic traders, followed by European missionaries who introduced Christianity during the colonial period.29 Currently, over 87% of Indonesians identify as Muslim.30 An example of the interconnectedness of culture and religion are the Walisongo (the Nine Saints), which adopted a humanist approach to gradually introduce Islamic values to the Javanese population who then held their own traditional values.29 Globalisation continues to impact culture and religion, for example through human rights, feminism and beliefs in equality.31 In this study, we understand religion as being a part of culture.32
Study population and recruitment
Study participants were recruited using purposive sampling based on predetermined criteria.33 Women were made up approximately half of the participants, to include male and female gender perspectives, since gender was thought to impact WMM. The inclusion criteria for participants were to be (a) a native Indonesian expert in one of the following disciplines: anthropology, sociology, public health, psychology and/or medicine, who had lived in Indonesia for most of their life; (b) involved in work concerning health-related stigma in Indonesia; and (c) able to participate in an online interview with the researchers. Emails were sent to such experts and snowball sampling was used to find additional participants from information provided by initial participants.34
Patient and public involvement
During the development of the proposal for the larger research project, persons affected by leprosy were asked to contribute and their recommendations were incorporated in the study design.
Research methods
An interview guide (presented in online supplemental appendix I) was piloted with an international expert who had recently completed a study on health-related stigma in Indonesia. The interview was structured around concepts relevant to WMM, including ‘cultural dynamics’, ‘health-related stigma experience’, ‘moral experience’/‘capabilities that signify personhood’ and ‘personhood in local communities’. Since earlier studies had shown that gender roles are salient in Indonesian culture,23 35–37 this was investigated for men and women separately. During the course of data collection, the interview guide was adapted to improve the interviews. For example, we added more questions on gender expectations since it seemed to be a significant topic during the first few interviews conducted.
Supplemental material
Data were collected until we obtained data saturation.38 15 in-depth interviews were conducted in total. Due to the COVID-19 circumstances, the interviews were conducted online via Zoom and Microsoft Teams. Interviews lasted from 45 to 60 min and took place between April to September 2021. Most interviews were conducted in English, but five participants preferred to do the interview in Bahasa Indonesia.
To gain more insight into why certain cultural capabilities were deemed to ‘matter most’ all participants were invited to join a member check through a small online group discussion. The group discussion consisted of three participants, each covering a different geographical area of Indonesia (West, Central and East).
Data analysis
The in-depth interviews and group discussion were audio-recorded, transcribed verbatim and if necessary, translated into English. The data were arranged and coded with the support of Atlas.ti 9 and analysed using thematic content analysis. This consisted of both inductive and deductive approaches, described in the next section.33 39 To enhance the credibility of the data analysis, researcher triangulation ensured that the process was collaborative.
The final code list (27 codes) was determined after eight interviews when no new codes emerged. At the end of this open-coding process, all transcripts were revisited using the final coding list, to ensure that all potential codes had been applied to all transcripts. Codes were analysed using thematic content analysis and codes were grouped under three main categories: (a) ‘cultural capabilities that matter most’; (b) ‘how WMM can shape and intensify stigma’ and (c) ‘how WMM can act to preserve personhood’. These categories were taken deductively from previous work of Yang and colleagues.6 8 40 A more detailed description of the categories can be found in online supplemental appendix II.
Results
Research population
The sociodemographic characteristics of the participants are presented in table 1. A total of 15 participants were interviewed, of whom 7 were public health experts, 3 were psychologists, 2 were sociologists, 2 were anthropologists and 1 was a medical doctor. All participants lived in urban areas, like Jakarta, Surabaya and Makassar. Most participants were Javanese, followed by other minority ethnic groups like Malay, Aceh, Bali and Betawi. The stigmatised diseases they studied included, among others, leprosy, mental illness and HIV. Participants have conducted most of their research on Java, in provinces like Jakarta, Yogyakarta and East Java.
Overview of the research population
What matters most
In this study, personhood is the condition of being a social, physical and conscious individual which is constantly shaped within ‘local worlds’. Two domains of everyday engagements that ‘matter most’ in low-resource rural and urban settings in Indonesia could be identified that would reflect ‘personhood’. These domains include (a) achieving community participation and (b) family recognition, which are mutually constitutive and interact with other cultural values.
Community participation
Experts emphasised the importance of maintaining a good community reputation, influenced by collectivism. The first salient cultural aspect was ‘gotong royong’, described as Indonesian philosophy emphasising ‘mutual assistance’ and voluntary work. This cultural value implies that people living in a community are expected to help each other, undertake voluntary work (kerja bakti), and to put group needs before their own needs. The following quotes illustrate the importance of communal activities and its impact on social standing:
So, the functioning of a person is also highly viewed from his ability to join the community. (P2)
You just need something to fall back on. So when I built my certain group of people, it is more like I just need to create my circle of people who care, whom I can trust (P11)
This relates to the second salient aspect, ‘propriety’. Several participants, mostly experts in HIV-related stigma, noted Indonesia’s emphasis on proper conduct in everyday behaviour. Conformity to social and religious values is expected, and deviating from these norms can result in shame and have a negative influence on one’s reputation, affecting not only the individual but also their immediate and extended family within the community.
If we do something wrong and it is proven that way, then this is embarrassing … not only for ourselves but also for our family and even the extended family. (P1)
Men and women must try to maintain a good [family] name. If someone disrupts that good name, they will also, whether male or female, feel hurt and humiliated. (P1)
A good reputation could be achieved by being acknowledged within a larger entity, like the community or the family. For instance, one is expected to socialise and make themselves useful by participating in communal activities, such as funerals, weddings, birth or circumcision ceremonies. These are also called selamatan: communal celebrations often accompanied with religious activities. Participants noted that a favourable reputation and involvement in social network could provide individuals with an increased access to opportunities, also termed ‘social capital’ by one participant. These essential social connections offer benefits like moral support or work opportunities, underscoring the importance of socialising, as described in the following quotes:
… because we live side by side, so it is very important to respect each other and to be able to socialize with the other people who live around us. (P8)
People here think that they cannot live or die alone. So, they need support, need society to socialize and to build a support system for themselves. And when they lose it [the community], they feel like they lost everything. (P1)
Some participants explained that the collective culture can also have negative consequences by providing limited space for individual independence or self-expression that are contrary to cultural norms. The following quotes underscore this notion and illustrate possible repercussions:
In this communal culture there is almost no space for individual freedom. Individuals cannot actualize themselves and express themselves according to their will, even though they do not violate certain values or norms. (P15)
People will be very scared to deviate from the expectations or the norms, because it is very frowned upon; something that is unacceptable. You will be more isolated from the community, and then you’ll lose it. (P11)
Family recognition
Participants highlighted the significance of contributing to the family for achieving personhood in Indonesia. Individuals must meet family expectations and families must maintain their reputation in the community.
Underlying aspects of family recognition vary by region; for instance, one participant connected family reputation to a caste system, emphasising its importance in upholding honour in society:
The cultural structure in Bali is based on the caste system … For example, if a man [from a higher caste] falls in love with a lower caste woman, he will not dare to tell his family … Higher caste means they are descendants of the ancient royal families. If he told his family, then he would be stigmatized by his extended family. (P6)
The participants also described situations in which the family reputation could be tarnished or lost. Examples were having a family member with a stigmatised health-related condition, occupational or educational failure, or any other type of behaviour that goes against cultural norms and religious values, like promiscuity or being identified as a sexual minority. The subsequent quote illustrates this:
One of the reasons why people are not telling their HIV status to their families is because they are afraid that their extended family will stigmatize my their immediate family’ … They keep their status hidden to protect the reputation of their [immediate] family. (P9)
On the other hand, factors which could earn respect for a family were employment, a good education and sometimes material possessions (eg, owning a large home). Moreover, the notion of ‘shame’ was frequently linked to family recognition, impacting both individual and their family members, often tied to propriety. Consequently, stigmatised conditions are often concealed within the family, or people with stigmatised conditions may be confined or secluded at home. Secrecy serves as a coping mechanism, although potentially leading to stress, to maintain one’s daily activities. Moreover, in cases that the family reputation was tarnished, family members were observed to limit participation in communal activities. This is aggravated by gossip, which appeared as the main cultural mechanism that could mark ‘loss of personhood’, illustrated in the following quotes:
In our culture, we love to talk about bad things from others, like ‘oh this is a bad family’. It is very important to maintain the good name of the family, so that we can be accepted in society, and able to participate in all community activities around us. (P8)
I remember there is a food seller near my house, and she had a lot of customers, until there was a rumour saying that she got leprosy. People stopped visiting her restaurant, and then she moved away to somewhere else … That’s how leprosy is used to spoil people and also businesses. (P4)
Another participant also stated that individual achievements and successes are not enough to gain a good reputation and that family name still plays a big role in Indonesian culture:
So, who is your father, your grandfather … I guess reputation can come from any of those. Having a good job or a high education are main [big] things, but I guess family name is a big factor in Indonesia [significantly contributes] to gain reputation. (P11)
Intersection with gender (equality) and patriarchal norms and values
Community participation
According to many participants, the opportunities in life differ for men and women due to a patriarchal culture in Indonesia. It was often stated that men generally have more opportunities in life than women. One participant described this:
Indeed, men have more … get more appreciation than women in a society with a communal culture and very high patriarchal ideology. And not only differences in appreciation, but also consequently differences in opportunities and access. (P15)
Engaging in communal activities boosts community standing and foster socialisation, important for both male and female genders. However, the type of communal activities is gendered and different for men and women. Examples of activities for men involve community meetings, village fund (dana desa) allocation and guarding of the village to maintain security (ronda malam). Tasks for women included work in an integrated health centre (posyandu) and participation in certain community gatherings (dasa wisma) supporting family, health and well-being programmes. These duties deemed significant and were entrusted only to those seen as responsible. Other reported communal activities revolve around religious events, like funerals and circumcision ceremonies.
Family recognition
Achieving personhood differed between men and women due to differences in social expectations relating to family matters. All participants acknowledged gender-specific norms in maintaining family roles. Men are seen as the head of the family and are therefore expected to take decisions and financially provide for the family. As per result, one way for men to increase their family’s community standing is through their occupation. According to many ethnic traditions and customs (adat), men also have the responsibility to pass on their family names and cultural traditions to their children. Women are often perceived as responsible for their children’s upbringing. Thus, finding an appropriate spouse, getting married and having children is seen as a prerequisite for achieving personhood for both men and women to continue the family line and pass on customs. Further, having children outside marriage is often perceived as unacceptable. Some participants explained that having a stigmatised condition could diminish marriage prospects (for women) or hinder employment opportunities (for men) in low-resource areas and in turn, affect personhood:
In Java for example … It is hard for them [women] to get married. Especially if they are descendants of leprosy patients, that’s what I have heard. (P1)
In our very patriarchal society, the burden of unemployment can evenly affect … is a gendered phenomenon. If you are a man and you are not working, most likely not just your family but also your neighbours will have a negative view about you. (P14)
Both men and women can tarnish a family’s social standing by committing acts which are contrary to the cultural norms and gender expectations. The participants indicated that the consequences would affect their immediate family which are usually exacerbated by gossip.
WMM can intensify stigma
All participants agreed that stigmatised conditions have a big impact on the daily lives, activities and social engagements of affected persons. The stigmatising dynamics did not seem to differ across the different stigmatised conditions. Further, individuals with visible symptoms such as extreme weight loss (HIV), skin ulcers (leprosy) or episodes of delusions (schizophrenia) are more likely to be excluded from communal activities. Members of the extended family who live close to the affected stigmatised person, will most probably be stigmatised as well. The individual’s behaviour will be labelled as wrong (dicap buruk) by the community and affects women and men similarly. In almost every interview, it was said that people with a stigmatised condition could participate to a limited extent in social gatherings and fulfil their daily duties compared with non-affected persons:
If the celebratory feast comes from a family with leprosy, others will not accept it. Sometimes people accept food, but then they throw it away once they get home. So that is actually proof that they are shunned. They live together, as neighbours, but they are shunned. (P5)
Sometimes people with mental illness do not get invited [to attend gatherings] … So, people do have that prejudice and it does limit their network, or their friends, or their access to even have friends, or to attend meetings. (P10)
One of the causes of people who are infected with HIV may be exposure to behaviours that are not in accordance [deviate] with the norms and culture of Indonesia. … Someone with the disease, often face stigma and discrimination from society. (P8)
Some participants mentioned the feeling of ‘being a burden to the family’ and feeling useless, which denotes a ‘social death’. Stigma can be exacerbated by community gossip surrounding an individual and their family. Women’s behaviour tends to be more frequently gossiped about due to the patriarchal norms, hampering reintegration and acceptance into the community, as illustrated in the following quotes:
But when we talk about stigma or why stigma happens when a certain health condition occurs to people, … I think it is more related to that they don't want to lose their social standing. And such disease is being labelled as something related to moral values or things like that. (P11)
Maybe men are more indifferent [cuek] if they make mistakes. Due to his coping, he may be faster to return to normal. But for women, it usually takes time to go back to their own self or to the community again, it will take longer than for men. (P8)
Importantly, social cohesion and gossip seemed to be more prominent in rural than in urban areas, which one participant perceived as more individualistic with less social cohesion:
… In urban areas, more people get better education, read the news, starting to filter the news they read or heard. People do not engage as much socially, they work so they don’t have time to gossip with their neighbours. (P3)
WMM can act to preserve ‘personhood’
Interestingly, participants noted that stigma could decrease when individuals fulfilled societal expectations, despite facing stigmatisation. For example, adhering to traditional gender roles could improve one’s community status even when affected with a stigmatised condition. While urbanisation brings Western influence, many still uphold traditional gender norms although some recognise the increasing significant roles of women’s roles:
… when he can do his job, earn money for himself, at least the family members will still respect him. (P8)
… they manage to reduce the stigma because she can demonstrate to the people around her that she is healthier than before. She can get to be a better mother for her children and contribute to the social gatherings and the communities, things like that. (P14)
Discussion
This study offers interdisciplinary perspectives on cultural capabilities enabling people to achieve personhood in the context of health-related stigma in Indonesian culture. Guided by the ‘WMM’ theory by Yang et al,6 expert perspectives were examined regarding how a stigmatised condition impacts personhood and how personhood can mitigate stigma in case one is still capable of achieving it. Our study revealed that Indonesian personhood entail community recognition and participation, alongside preserving family recognition and status. For example, these include participating in social gatherings and communal events or supporting the family’s needs by means of financial aid. By doing so, people were perceived as ‘capable’ and ‘responsible’, resulting in a person’s good reputation in the community. These community and family capabilities and maintaining family reputation were reported to interact with stigma experiences, potentially providing protection in certain situations.
Reflection on the findings
Our findings revealed that ‘gotong royong’, or mutual assistance, which denotes reciprocal support, serves as a key cultural capability in moderating health-related stigma. This finding is in line with Slikkerveer who found that ‘gotong royong’ is essential in Indonesian village culture and promoting indigenous ‘knowledge, practices and beliefs’.41 In turn, this could foster local community involvement in sustainable development interventions.38 41 A similar concept of mutual assistance is observed in other collectivist cultures, such as Japan and Eswatini (formerly Swaziland). For example, Murayama et al found that mutual assistance is effective in Japan, improving mental health and reducing fear among elderly individuals living alone.42 Fonner et al found mutual assistance to support disadvantaged groups in Eswatini to gain access to social capital and material assistance, consequently promoting protective HIV-related behaviours.43 Further, our study revealed that having a stigmatised health condition may undermine an individuals’s contribution to collective interests, as they are often perceived as weak and incapable; a perception that is potentially intensified by community gossip. This threatens personhood and hampers full community participation. These findings are consistent with research in other cultures, like Botswana and India.44 45
Another cultural value moderating health-related stigma is propriety, which was strongly related to feelings of shame. Deviating from cultural standards was reported to result in shame, felt by the affected person and their family. Stigmatised conditions and their symptoms were perceived as abnormal, and the resulting sense of shame could lead to a delay in health-seeking behaviour or in potentially harmful coping strategies, such as secrecy. Although secrecy can be experienced as very stressful, it is still common among affected individuals in Indonesia.24 46–48 These findings are in line with Subandi and Good who studied shame in the Javanese culture within the context of psychotic illness. They found that shame plays a major role in social relations, prompting families to conceal the illness of an affected family member.49–51
Further, family recognition and participation were found to moderate health-related stigma. The family name could enhance life opportunities but could also be tarnished by a stigmatised health condition. In turn, not achieving these capabilities due to a health condition could further intensify stigma. For instance, marriage is viewed as essential for attaining personhood, as it is culturally preferred to be married before starting a family and it allows individuals to contribute to their immediate family. These findings are supported by previous research showing that a stigmatised condition can jeopardise marriage prospects disrupt existing marriages.37 50 52 53 Since family ties hold significance in Indonesian culture, health-related stigma often extends to other family members, termed ‘courtesy stigma’ by Goffman.54 This means that stigma affects not only the affected person but also their close relatives.9 53 55 56 Tekola et al argued that in Ethiopia, a family’s honour could be compromised by a member with developmental disorders.57 Yang and Kleinman, similarly found that stigma surrounding schizophrenia impact entire families and social networks, limiting access to resources and opportunities. To counter stigma, families often conceal or deny mental illness.9
Finally, our study suggests that the relationship between cultural capabilities and health-related stigma is gendered. This results from the reinforcement of specific gender roles, which are largely based on patriarchal systems and structures which are enforced via socialisation at home and in society.58 59 The traditional role division in Indonesia, particularly on Java, is influenced by the norms of conventional Javanese culture and the values of Islam.60 Men mostly fulfil the role of breadwinners, while women bear and take care of children.61 62 The existence of patriarchal values and norms in society can give rise to inequality. This has been previously raised by Supraptiningsih and Jubba in a study conducted in Madura.63 Societal expectations for women can hinder abilities, autonomy, opportunities and access to resources. Moreover, Rai et al found that intersectionality and health-related stigma towards people affected by several stigmatised conditions in Indonesia supports findings on how multiple dimensions such as gender and socioeconomic status can intersect to shape experiences of health-related stigma such as social exclusion, discrimination or prejudice.23
Strengths and limitations
Interviewing scholars offered valuable and in-depth insights. However, our study population did not include participants from all provinces of Indonesia, which means that certain cultural nuances from other areas may have been overlooked. Further, their perspectives may not fully reflect all aspects of moral experience and experiences of stigma in ‘local worlds’, given their socioeconomic status and level of education, which could also be potentially influenced by globalisation. Nevertheless, the study included diverse participants, including academics from various disciplines, each with expertise of various health conditions. This variety enabled us to gather rich insights into the underpinnings of health-related stigma in Indonesian society.
Implications
Our findings based on perspectives from scholars revealed that community engagement and family recognition impact stigmatisation of individuals and their close family. Therefore, incorporating these factors into stigma reduction approaches such as peer support groups and family counselling is important.64 65 These programmes should uphold the concept of personhood while fostering meaningful participation to restore self-esteem and productivity.57 59 60 Future qualitative research should include individuals from various socioeconomic background to explore a wide range of experiences, particularly about the effects of exclusion and potential strategies to pre-empt these. Further research is needed to develop and evaluate interventions based on promoting personhood and informed by ‘WMM’.66 67 Efforts to assess and reduce stigma should take into account the intricate nuances of communal sense in the daily lives of those affected, and incorporate considerations of social standing, acceptance and empowerment into their design.
Conclusion
This study explores interdisciplinary perspectives on cultural capabilities that ‘matter most’ to achieve personhood and their interactions with health-related stigma in Indonesia. A collectivist society and shame culture shape experiences of stigma and personhood can be achieved by being recognised as part of the community and family. These findings show that cultural capabilities in the community potentially intensify stigma as well as may protect or against stigma. This study contributes to research on the cultural shaping of health-related stigma using ‘WMM’ in Indonesia. Future research should prioritise insights from individuals affected by health conditions and develop stigma-reduction interventions incorporating these cultural capabilities.
Data availability statement
No data are available.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and ethical approval from the ethics committee of Atma Jaya University in Jakarta was obtained for the overall project (1010A /III/LPPM.PM.10.05/09/2020). For this study, the Research Ethics Review Committee of the VU Amsterdam (BETHCIE) concluded that further review was not required. The recommended ethical standards for conducting research according to the principles of the Declaration of Helsinki were followed. Informed consent was obtained from all participants before data collection. All data were stored confidentially.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
AS and YS are joint first authors.
Handling editor Manasee Mishra
X @oliensopamena
Contributors AS and YS contributed equally to this paper. AS, YS, MV, DD, LY and RP conceptualised the study and the study design. YS serve as guarantor. Data were curated and analysed by AS and YS. AS and YS were responsible for drafting the manuscript and supervised by MV and RP. Review and editing were performed by all authors. All authors have read and agreed to the published version of the manuscript. The manuscript used ChatGPT technology, primarily in the later stages, to condense text and reduce word count. It is important to note that AI was not involved in the initial writing of the manuscript, during the course of data collection, nor the data analysis phases of the manuscript.
Funding This study was supported by funding from the Leprosy Research Initiative (LRI) under project number 708.20.23LRI, received by RP.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.