Complex trauma and its relation to hope and hopelessness among young people in KwaZulu-Natal, South Africa

ABSTRACT Informed by an existing hope scale, we explored the roles of hope, happiness, and life satisfaction in adolescent risk behaviours in rural KwaZulu-Natal, South Africa, a setting with high HIV prevalence. In 2016 data were collected from two resource-limited communities using in-depth interviews, group discussions and lifeline-drawings with 53 young people (aged 15 to 17 years). Applying both deductive and inductive approaches, thematic analysis was used to analyse the data. Young people felt that there was nothing to do in their communities and no way out of their adverse situations. They experienced trauma of loss due to HIV-related deaths, and lack of support and guidance which they wanted if they were to be more hopeful. Continual and extended exposure to adverse experiences such as community violence and economic hardship had a negative impact on young people’s lives and increased participation in risk behaviours. To develop HIV prevention and resilience interventions in such communities, there is a need to take account of the context of young people’s lives. Rather than ignoring the structural causes of the infection, risk factors should be contextualised as a key component of any attempts to change behaviours. Resource and power inequalities should be addressed rather than developing individualised interventions which may inadvertently increase social inequalities.


Introduction
Hope has been identified as a psychological factor that contributes to self-reported health and well-being, improvement in health adjustment, with a positive relationship to quality of life (Billington et al., 2008;Lazarus, 1999;Perveen, 2019;Scioli et al., 2016;Tian et al., 2018). Snyder and colleagues defined hope as, 'a cognitive set that is based on a reciprocally derived sense of agency and pathways' (Snyder et al., 1991). Snyder proposed that the conceptualisation of hope involves a cognitive appraisal of an individual's capabilities in making a subjective decision on whether one can attain their goal (Snyder et al., 1991).
It has been theorised that hope has an impact on health and behaviour and has been associated with HIV in terms of wellbeing and coping with illness (Kylma, 2005;Petersen et al., 2010). Hope is an important concept within HIV interventions due to its mediating effect in HIV risk behaviours and its potential for behaviour change for HIV prevention (Bernays et al., 2007;Burnside & Gaylord-Harden, 2019). As a framework to understand the important link between individual behaviours and the risk environment, hope shows how the environment regulates an individual's choices leading to a manifestation of risk behaviours or prevention behaviours (Abler et al., 2017;Bernays et al., 2007). As such it is an important construct to explore when investigating underlying factors related to HIV transmission and in developing structural interventions for HIV prevention in high prevalence settings.
To assess this construct, various scales have been developed including Snyder's State Hope Scale which measures the variables of agency and pathways as an indicator of a latent construct 'hope'. However, Snyder's scale, like many psychometric scales does not consider the external influences of agency and pathways focusing on the person rather than on the individual embedded within a broader socio-economic structure. This approach assumes that hope is solely dependent on one's own capacities, whereas evidence indicates that agency and pathways may involve commitment and actions from other people (Bernardo, 2010). In addition, some behaviours associated with a construct are linked to the setting and environment that has an impact on cognition and in turn on variables used in a scale to measure hope.
We draw on data from a larger study developing a contextually informed hope scale by exploring emergent properties (hope, happiness and life satisfaction) and their impact on adolescent risk behaviour (Desmond et al., 2019). The current paper reports on the formative qualitative aspect used to explore adolescents' understandings of hope and to redefine the hope scale. We examine how adolescents, when asked about hope, narrate their current life stories in relation to their environment and their future lives. This has relevance within the context of the HIV-epidemic and the need to review 'susceptibility' of certain individuals, how it may influence individual acquisition of HIV and thus the HIV epidemic in South Africa.

Study design and eligibility
In 2016, we conducted a cross-sectional multi-methods study investigating how well an established measure of hope, the Snyder Scale, was understood and a quantitative analysis of how hope, measured with a redefined scale, explained differences in self-reported alcohol consumption (Desmond et al., 2019). An initial phase of qualitative work reported in this paper was conducted to explore the meaning and understanding of hope among adolescents and to inform the development of the redefined scale.
Data were collected from 23 male and 28 female adolescents (aged 15-17 years) recruited from two communities (one rural and one peri-urban) in Hlabisa sub-district of uMkhanyakude in KwaZulu-Natal, South Africa. The sampling frame included: i) out of school youth, ii) school-going, iii) youth with resources such as flushable toilets/piped water/electricity, iv) with limited or no resources, v) with parents with income, and vi) with parents with no income or with unstable income.

Study setting
The study area is one of the most deprived districts in South Africa with high HIV prevalence, high unemployment, limited resources such as water and electricity and few recreation activities. Hlabisa is in KwaZulu-Natal, a coastal area located 250 km north of Durban. People make a living from small-scale farming, waged labour (at the nature reserves, commercial farmlands, and a mine), pensions or government grants. Due to commercialisation, there has been an increase in income-diversification as people try to move closer to the local town and main transport routes to access work, leading to overcrowding and creation of informal settlements within the townships. We collected data from one township that has informal settlement housing and another high-density community, within the same sub-district of Hlabisa.

Recruitment and consent
Eight research assistants (RAs) from the local area trained in qualitative methods recruited participants in the communities using the sampling criteria. The RAs had a close understanding of the local community and population under investigation as they were part of the community and were fluent in the local language IsiZulu. Each RA was tasked with identifying young people within a certain category. When a young person was identified (face to face), they were approached by the RA and informed about the study, asked if they were interested in taking part and then asked for permission to contact their parent/ guardian to discuss the study. If permission was granted, the RA then went to the young person's home and gave the parent/guardian the information sheet to read with a verbal explanation of the study. The RA followed up after they had had a chance to read the information sheet (usually 48 hours). After that time, the RA contacted the parent/guardian to schedule a meeting with the young person at their preferred place (at home for interviews and community hall for group discussions). Prior to participation, written informed consent was obtained from the parents/guardians of the young people as they were less than 18 years old. The participants themselves provided written assent.

Data collection
A qualitative design complemented by two data collection tools namely a semi-structured discussion guide (SDG) and lifeline-drawings as graphic representations of their hope throughout their life, depicting when they developed hope, the high points (hopeful) and the low points (hopeless) was employed (Clark et al., 2020;Klaw, 2008). Thirty key informant interviews and four group discussions were conducted. The interview guide was developed from the Snyder scale with a focus on exploring young people's perceptions of hope, happiness and social value, and the influence of these factors on risk behaviours (see Table 1). The semi-structured interviews allowed for some predetermined questions and probing led by participant responses on issues that they thought or felt to be of importance to them. A lifeline-drawing was used at the end of the interviews and group discussions to engage the young participants and to unpack group ideologies and the social construction of the key concepts (Patterson, Markey, & Somers, 2012). Some of the key interests explored during the lifeline-drawing included: Why hope developed at a particular time/age? Who taught the person about hope? When and why levels of hope change? What brought on this change? If change were negative, what they thought could help the person become more hopeful?

Ethical considerations
The study was approved by the Human Sciences Research Council (HSRC) Research Ethics Committee (4/17/02/16). The Africa Health Research Institute Community Advisory Board, made up of members of the tribal and civil councils in the local district, also approved the study.

Data Analysis
The research team held debriefing sessions during data collection to review the study tools and adjusting accordingly. Data were transcribed and translated from isiZulu to English by the researchers and quality checked by the coordinator. Data analysis was conducted manually using a constant comparison technique (Strauss, 1987). An integrated approach was employed with both inductive and deductive coding (see Table 2). With the deductive approach, the topic guide informed by the research questions was used to frame the analysis and coding. A researcher with a background in psychology (NN) led on the current analysis and coded the data inductively in relation to the current study aim of exploring the meaning and understanding of hope. Iterative-induction process of open coding was employed by reading through the transcripts individually and identifying emerging themes related to hope and happiness. The codes were  discussed with the team to ensure that they reflected the data. Thematic analysis informed by constructivist grounded theory was then used with all transcripts analysed as a single unit to group systematically the main categories that emerged (Cascio et al., 2019;Charmaz, 2014).

Findings
The concept of hope ('ithemba') emerged as a complex construct often linked to emotive constructs (wish 'isifiso', desire 'isifiso', want 'ukufuna/isfiso', and dream 'amaphupho') about something that would be acquired in future. Although these words are accurately translated in the isiZulu language, they do not evoke the 'agency and pathways' constructs of hope. The adolescents' narratives revealed three major factors that influenced their constructions of hope (see Table 2): Adverse community contexts ('No way out'), Family loss ('Trauma of loss') and Resiliency practices ('To have hope, you need guidance'). We now discuss each factor in turn.

No way out
Participants consistently described a lack of opportunities in their community due to economic hardships that resulted in few basic resources, including water, schools, employment and safe spaces for recreation. This lack of resources inevitably produced feelings of hopelessness, which some considered to promote adverse behaviours such as gang involvement, pilfering and substance misuse:  Embedded within the adolescents' narratives, are references to feeling 'stuck', with limited opportunities to create more desired outcomes. This is also reflected in the extract below where adolescents prepared for undesired outcomes: 'They speak tsotsi [gangster] language . . . They say this language is spoken when one is arrested and in jail. So, they are preparing themselves in case they get arrested . . . so they prepare themselves to be familiar with that kind of life in jail. ' [16-year-old male] Consistent exposure to community violence and victimisation promoted a culture of fear and being constantly vigilant amongst young people in the community. Other participants, particularly females, said this lack of safety has an impact on how they lived their lives: 'I live in a community that is not good because there are criminals . . . It is the criminals that break into our houses and mug people they also rape them and do everything . . . I go with a crowd of children or even with our brothers when we go or come from school . . . we go with our brothers even at night for protection . . ..even when we go to a shop we ask them to accompany us.' [16-year-old female]

Trauma of loss
The loss of a parent was noted as a common occurrence due to the HIV epidemic. Young people described how the death of a parent impacted negatively on the individual's outlook on life and hope for a better future. The link between parental support and goal attainment was discussed as participants reflected on how the absence of parental figures compromised success and goal attainment.
'I lost hope when my mom died. I thought that she would live until I finish school. I was hoping that I would do something for her because she raised me and did everything for me and provided for me; now I live with my dad and my aunt. ' [15-year-old male] In addition to the impact of its influence on future success, the loss of a close family member also produced feelings of sadness and hopelessness: 'It depends on the situation that occurs in different families may be if there is someone who has passed away most of them turn to be unhappy. In the families where there is no one who passed away people there can be happy' [17-year-old male]

To have hope, you need guidance
Given their descriptions of a community context beset with adversity, the participants' hope in the prospects of future success appeared compromised. To address their experiences of hopelessness, the participants suggested that support through mentoring could encourage hope: 'If you are hopeless to progress in something you need words that will guide you from an older person . . . If someone has guided you, sometimes you have hope that something will be a success. ' [15-year-old male] A common view amongst participants was the lack of support and assistance from the government that could help them make a difference in their lives. ' Young people were aware of things that could be done that would help increase their personal and society's resilience to the effects of adverse childhood/youthful experiences.

Discussion
The findings contribute to the emerging literature that describes the impacts of adverse events and contexts on behaviour, and risk-taking (Bellis et al., 2014;Demir-Dagdas, 2020;Kessler et al., 2010;Machizawa-Summers, 2007;Wilke et al., 2020). Although the study focused on exploring hope among the participants, the young people focused on their contextual interpretation of the constructs of hope, which involved the social contexts influencing their perceptions and events in daily life. The context shaped their dreams and wishes, especially to those in more adverse and unstable situations.
The continual and extended exposure to community violence, and economic hardships led some young people to engage in risky activities/behaviours including drug abuse, smoking, and sexual relationships (Brown et al., 2015;Demir-Dagdas, 2020). They explained how their setting is a risky environment that contributed to other young people making decisions and choices that exposed them to an increased risk of HIV infection. This is in line with the proposed hope framework, showing how an environment can be a risk regulator that can either expose an individual to risky behaviours or provide protection (Bernays et al., 2007). Other studies have shown a relationship between adverse childhood experiences (ACEs) and HIV risk behaviours and These adverse experiences caused an increase in activities such as smoking, consistent with research that shows how ACEs contribute to as many as one in six individuals smoking (Kessler et al., 2010). These data on the relationship between childhood adversities and risky behaviours may help identify individuals that are predisposed to HIV risk and suggest that in high prevalence settings, HIV prevention strategies should target ways of reducing ACEs (Fang et al., 2016;VanderEnde et al., 2018).
Another outcome of the adversities is that to survive these young people are conditioned to be on-edge and defensive due to the community violence. Parental loss through death or separation was also a common experience with a negative impact on hope. This is an adversity that was added to a list of ACEs described in the literature due to its significant impact on the psychological well-being of a child (Nickerson et al., 2013;Seidel et al., 2017). These stresses have a psychological impact on young people with long-term consequences including impact on physical health Lamers-Winkelman et al., 2012). The HIV epidemic has caused stress to young people and the community, resulting in indelible images and experiences, painting what many young people see as a bleak outlook for the future and local environment.

Limitations of this study
This study has some limitations. The results are based on self-reported exposure and therefore did not question aspects of what young people considered to be adverse experiences. Social desirability may also have an influence on the results as the data collectors were themselves young people from the community under investigation. The development of the research tools did not involve young people and therefore could have influenced the lack of understanding of the questions by participants. Due to the prolonged exposure of most of these small traumas, it is possible that there was an underestimation or under-reporting of these experiences as participants would have thought of it as part of their daily lives and therefore do not see them as any reason for concern. However, the consistent expression of the magnitude of these events and experiences lends credence to the notion that there is a need to identify protective factors that buffer the impact of adversity among adolescents living in poor resource limited settings where they are most likely to be exposed to chronic ACEs. It is important to be able to identify explanatory variables for such adverse experiences to develop reliable resilience intervention.

Conclusion
Limited work has been conducted examining hope among adolescents who are at high risk for experiencing ACEs due to their milieu. Consideration of the distal causes of diseases is of critical importance in contextualising risk and identifying 'fundamental' causes of disease that may trigger the recurrence of the disease even after intervening (Link & Phelan, 1995). These results show that ACEs are a common and often ignored phenomena which contributes significantly to basic public health problems and as such is a fundamental cause of disease/health problems. This approach calls for a change in policies that will reduce resource inequalities than developing new interventions that inadvertently increase social inequalities for some parts of the population (Phelan et al., 2010). Contextualising risk factors may also be a more productive and empathetic way of developing resilient individuals and resilient communities.