Reacting to Infectious Disease Outbreaks: Considering the Psychosocial
II Access to Evidence
IV Key Findings from the Literature
V Discussion and Conclusions
--Submitted by Stephanie Vendetti-Hastie, Kristin Read, and Dr. Maureen Dobbins, National Collaborating Centre for Methods and Tools
Outbreaks of infectious disease can have tremendous impacts on individuals, families, communities and populations (Pappas, Kiriaze, Giannakis, & Fallagas, 2009). In addition to causing physical harms such as illness, disability and death, infectious diseases can also elicit strong psychological responses such as anxiety, fear and panic. These impacts can affect numerous subgroups of individuals with vastly different social, cultural, educational and economic backgrounds who may respond to threats of infection in different manners (Van Bortel, et. al., 2016).
The environments where outbreaks occur also have key implications for their management. When outbreaks occur in countries with limited resources, disease response frequently requires support and intervention from the international health community. This response can pose additional and sometimes unintended challenges to efforts of controlling disease spread. While biomedical and epidemiologic interventions are key in controlling the spread of epidemic disease; also important is the provision of high quality care for the psychological, emotional, cultural and social impacts of the outbreak (Shultz, Baingana, & Neria, 2015; WHO, CBM, World Vision International & UNICEF, 2014).
Evidence suggests that psychosocial responses to outbreaks may contribute significantly to the perception of disease, its spread, and the effectiveness of infection prevention and control (IPAC) strategies (Van Bortel et.al, 2016; Pappas et.al, 2009). Access to research on the psychosocial factors that can promote, prevent or reduce transmission of infectious diseases during outbreaks is required in order to develop effective and appropriate IPAC interventions and public health responses. The 2013-16 Ebola Virus disease (EVD) epidemic in West Africa presents a unique opportunity to examine the psychosocial effects of the disease at its epicentre and beyond (Schultz et.al, 2015). Evidence of how individuals and groups respond to outbreaks may help inform IPAC interventions that can be applied within unique contexts and lead to improved outcomes.
II Access to Evidence
OUTBREAKHELP is an easily searchable, online platform that was created with the purpose of sharing information and resources gathered from around the world on EVD prevention, management and control. Developed through collaboration among three departments in the Faculty of Health Sciences at McMaster University, extensive and up-to-date EVD related searches have been conducted to identify published and grey literature, as well as other resources available on the Internet. The platform is relevant for health and allied professionals who may come in contact with persons infected with Ebola.
The evidence summarized in this article was obtained from the OutbreakHelp “Resources and other articles” section and includes studies prioritized as having higher methodological quality and tagged as being relevant to psychosocial considerations related to EVD. The findings are likely applicable to a variety of infectious diseases beyond the context of EVD.
All studies included in this article were specific to EVD, published in a peer-reviewed journal, included information with real world applicability, and were relevant to the topic of psychosocial considerations. Studies that met these inclusion criteria were assessed for methodological quality using an appropriate critical appraisal tool identified for each type of study.
In total 44 studies were found that met the inclusion criteria, ranging in dates of publication from 1998 to 2015. As more studies are published on this topic, additional research relevant to psychosocial considerations during an outbreak should be added to this summary.
Study participants included individuals who had direct experiences with EVD in the outbreak epicentre such as those who became ill and subsequently recovered (survivors), persons who had contact with a person ill with EVD or their personal belongings (contacts), family members and other caregivers and healthcare workers. Study participants also included persons who did not have direct experience with EVD and were outside the outbreak epicentre including health care workers, the broader communities in EVD affected countries and populations far removed from the outbreak.
IV Key Findings from the Literature
The following psychosocial themes emerged within the context of the EVD literature: emotions elicited; behavioural responses; and influencers (defined as the broad category of factors that may have contributed to emotions and behavioural responses). The findings are categorically presented, however there is considerable overlap and integration among the themes.
Eighteen studies described emotions that were experienced by individuals as a result of EVD outbreaks. While many emotions were expressed, fear and anxiety related to EVD were frequently reported by EVD survivors, contacts, family/caregivers, healthcare workers and community members in EVD affected areas. The most frequently reported subjective fears, common across all groups, were fears of contracting infection/becoming ill (or having EVD infection relapse) (Alqahtani, et al., 2015; Locsin, Barnard, Matua, & Bongomin, 2003; De Roo, et al., 1998; Locsin & Matua, 2002; Li, et al., 2015; Matua & Van der Wal, 2015); generalized anxieties (Mohammed, et al., 2015); being stigmatized, rejected or abandoned by family, friends and community members (Lehmann, et al., 2015; Hewlett & Hewlett, 2005; Locsin, et al., 2003; De Roo, et al., 1998; Matua & Van der Wal, 2015); and infecting others, particularly loved ones (Locsin & Matua, 2002). For some, the concept of “waiting in fear” was described, as participants worried through incubation periods to see if they were going to develop infection (Locsin, Kongsuwan, & Nambozi, 2009; Locsin, et al., 2003; Locsin & Matua, 2002). Due to the repeated EVD exposures of some contacts, particularly healthcare workers, incubation periods never really passed and this fearful waiting took a toll on emotional and physical health (Locsin, et al., 2009; Locsin & Matua, 2002).
Some studies reported fears and anxieties that were unique to each group, for instance, survivors who reported witnessing EVD deaths around them expressed perpetually living with the fear of death and guilt for having survived (Hewlett & Hewlett, 2005; De Roo, et al., 1998). Among community members in affected areas there was a fear of healthcare workers and hospitals as both were seen as sources of EVD (Hewlett & Hewlett, 2005). Anxiety and fear were not exclusively reported among those in an EVD outbreak setting. Among healthcare workers from non-outbreak countries, including those who were considering EVD missions, fears and anxieties included contracting infection (Speroni, Seibert, & Mallinson, 2015a; Turtle, et al., 2015; Ganguli, Chang, Weissman, Armstrong, & Metlay, 2015); transmitting infection to loved ones (Highsmith, Cruz, Guffey, Minard, & Starke, 2015); and imposed quarantine measures (Speroni, et al., 2015a). Healthcare workers with international experience and more field experience were less likely to report fear of infection (Rexroth, et al., 2015).
Several studies also described fear and concern as emotions reported by some parts of the general public who were far removed from outbreak settings (Blakey, Reuman, Jacoby, & Abramowitz, 2015; Yang, 2015; Abubakar & Sulaiman, 2015; Kelly, et al., 2015). Contagiousness and lack of effective EVD treatment/cure were cited by some as reasons for fear (Abubakar & Sulaiman, 2015). Fear of travel, by air in general and to Africa specifically, were also reported in social media platforms (Lazard, Scheinfeld, Bernhardt, Wilcox, & Suran, 2015).
Fourteen studies described behavioural responses to EVD which included major themes of social rejection, ostracism, discrimination and stigmatization. These behaviours were reported by survivors, contacts, healthcare workers and community members in both EVD affected areas and beyond, although the expression of these behaviours varied depending on proximity to an EVD setting.
In EVD affected communities, suspected cases of EVD and survivors were reported as “feared” by the community and were treated as social outcasts, especially if quarantined (Matua & Van der Wal, 2015; Davies, Bowley, & Roper, 2015; Hewlett & Amola, 2003; Pellecchia, Crestani, Decroo, Van den Bergh, & Al-Kourdi, 2015). Some were shunned and experienced restrictions on their community activities like going to the market, well or borehole (Hewlett & Amola, 2003; Pellecchia, et al., 2015). Others reported restrictions on the activities of their family members, such as children being refused entry to school (Hewlett & Hewlett, 2005). This ostracism lead to denial of EVD whereby some people, ill with EVD or other diseases, denied their symptoms and refused to seek health care for fear of being stigmatized (Ogoina, 2015). Some abandoned their families to care for themselves in isolation while others were hidden by families in the household and cared for at home until death/recovery (Hewlett & Hewlett, 2005; Pellecchia, et al., 2015). Some ill people requiring care were reported as being neglected (Matua & Van der Wal, 2015) and left alone “to die.” (Hewlett & Hewlett, 2005; Hewlett & Amola, 2003). In extreme cases, especially in the early stages of the outbreak, suspect cases, survivors and their families experienced violence against them by the local community such as the destruction of their personal property and personal injury (Hewlett & Hewlett, 2005; Hewlett & Amola, 2003; Ogoina, 2015). African immigrants residing in other non-outbreak countries also reported being stigmatized because of the outbreak occurring in West Africa (Siu, 2015; Ogoina, 2015).
Similar behaviours were also reported by healthcare workers who had contact with EVD. In some cases, isolation was self-imposed by the healthcare worker for fear of infecting loved ones (Hewlett & Hewlett, 2005) in other cases isolation was an imposed public health intervention such as quarantine or social distancing designed to protect others (Lehmann, et al., 2015; Locsin, et al., 2009). Regardless of the reason for the isolation, being isolated from others physically enhanced feelings of social isolation or abandonment (Lehmann, et al., 2015; Locsin, et al., 2009; Hewlett & Hewlett, 2005). Healthcare workers reported being rejected by family, friends and colleagues who feared and avoided them (Locsin, et al., 2009; Hewlett & Hewlett, 2005). Children would no longer hug/touch them, spouses sometimes left them, and they were rejected from entering social settings in the community (Locsin, et al., 2009; Hewlett & Hewlett, 2005). For international healthcare workers providing relief, these behaviours were also experienced due to mistrust by the community. Local healthcare workers providing care alongside relief workers in EVD settings were also not trusted and for these workers the discriminatory behaviours against them were amplified (Hewlett & Hewlett, 2005).
Stigma associated with EVD was not isolated to EVD affected areas. Among healthcare workers practicing abroad stigma was described in several studies as a factor that would affect their willingness to provide care to an EVD patient (Kim & Choi, 2015) or to have contact with a colleague who had provided EVD response (Chan, Daly, & Talbot, 2015). Being stigmatized by interventions such as imposed quarantine and potential family and workplace rejection were seen as consequences of caring for an EVD patient (Highsmith, et al., 2015) or negatively impacted the desire to care for EVD patients (Kim & Choi, 2015). Some healthcare workers reported that they should be able to opt out of caring for confirmed or suspected patients (Speroni, Seibert, & Mallinson, 2015b). The general population in non-risk areas also reported having negative responses to EVD, though the threat of disease was low. This included the intention to avoid public transport and the favouring of mandatory quarantine and travel bans, even though these policies were not recommended by health authorities (Kelly, et al., 2015).
Factors Influencing Emotions and Behavioural Responses
Media/Access to Information
Twenty-four studies identified various media platforms as important sources of information during EVD epidemics which included TV, print, radio, Internet and social media platforms, some more widely used or regarded by participants.
In EVD affected countries/areas both healthcare workers and general public participants reported the majority of information on EVD came from television, radio and newspaper (Alqahtani, et al., 2015; Ughasoro, Esangbedo, Tagbo, & Mejeha, 2015; Joffe & Haarhoff, 2002; Basch, Basch, & Redlener, 2014; Alfaki, Salih, Elhuda, & Egail, 2016; Gigago, et al., 2015), followed less commonly by Internet and social media (Abubakar & Sulaiman, 2015; Alfaki, et al., 2016; Gigago, et al., 2015).
The use of media, Internet and social media to obtain information on EVD was higher in study sites beyond epidemic areas, particularly among the general public, though not exclusively (Turtle, et al., 2015; Ganguli, et al., 2015; Rolison & Hanoch, 2015), with the Internet being reported as a primary and trusted source of information (Abubakar & Sulaiman, 2015; Rolison & Hanoch, 2015). Social networks such as YouTube were also sources of EVD information (Nagpal, Karimianpour, Mukhija, Mohan, & Brateanu, 2015; Pathak, et al., 2015). Social media such as twitter delivered tens of thousands of EVD topic based tweets to billions of people over a period of days during the early stages of the EVD outbreak in Africa, demonstrating this platform’s unique, real-time information sharing potential (Lazard, et al., 2015; Towers, et al., 2015; Odlum & Yoon, 2015; Strekalova, 2016). Image sharing platforms were also used to disseminate information, although their use was less commonly reported (Seltzer, Jean, Kramer-Golinkoff, Asch, & Merchant, 2015).
EVD knowledge and awareness varied among study populations when measured (Gesser-Edelsburg, Shir-Raz, Hayek, & Lev, 2015; Rolison & Hanoch, 2015; Alfaki, et al., 2016;; Alqahtani, et al., 2015; Highsmith, et al., 2015; Abubakar & Sulaiman, 2015; Iliyasu, et al., 2015; Gigago, et al., 2015).
Cultural and politico-economic beliefs also play an important role in the emotional and behavioural responses to disease epidemics. Qualitative evidence obtained through descriptive studies in EVD affected areas described how illnesses such as EVD are explained through multiple explanatory models such as beliefs in spirits and gods, sorcery and witchcraft and secret societies (Hewlett & Hewlett, 2005; Davies, et al., 2015; Hewlett & Amola, 2003; Hewlett, et al., 2005; Gidado, et al., 2015). Members may seek care through traditional rituals and healers in addition to medical healthcare and may practice indigenous control measures in addition to biomedical interventions which may have positive, negative or unintended effects during the outbreak and beyond (Hewlett & Hewlett, 2005; De Roo, et al., 1998; Davies, et al., 2015, Hewlett & Amola, 2003; Hewlett, Epelboin, Hewlett, Formenty, 2005; Bogus, et al., 2016).
Cultural/spiritual traditions and practices can also influence disease outcomes in communities which may lead to disease spread. This was evidenced through traditional funeral practices that exposed those grieving to EVD (Davies, et al., 2015; Hewlett & Amola, 2003). Interventions designed to control the transmission of EVD from funeral traditions, such as mandatory cremation, created fear, mistrust and social harm in communities and further fueled the spread of disease as it led to the unsafe handling of bodies by those who resisted cremation (Hewlett & Amola, 2003; Hewlett, et al., 2005; Pellecchia, et al., 2015).
V Discussion and Conclusions
While the basic steps of outbreak management are clear and concise and centre on the epidemiologic concepts of verification of the outbreak, identification of cases, hypothesis development and implementation of control measures etc.; what may not be as clear is the role of complex psychological, spiritual, cultural and social factors in outbreak transmission. This is evidenced by past EVD transmission in Africa and the most recent EVD outbreak in West Africa where psychosocial factors contributed to ongoing virus transmission despite the implementation of control measures known to be effective.
Public health interventions to control the spread of epidemic disease must take into consideration the complex psychological, social and cultural factors of the communities who are affected. Whether responding to localized outbreaks in developed countries or providing international response to global health emergencies, understanding the psychosocial context of disease spread is as important as understanding the agent of disease.
Community engagement may assist in providing valuable information about local culture, beliefs and practices. Clear and concise communications strategies that acknowledge fear and address community misconceptions may help reduce stress and build trust in outbreak response. IPAC interventions should, wherever possible, provide for flexibility in implementation that aligns with local cultural beliefs and practices. These types of control measures are more likely to be accepted by communities and may decrease the unintended negative consequences of measures that are imposed. The integration of local knowledge and understanding of illness and biomedical interventions will achieve culturally relevant, acceptable and appropriate psychosocial interventions which are essential in prevention and control of infectious disease outbreaks (Van Bortel, et al., 2015). With respect to EVD, this evidence is highlighted on the OutbreakHelp platform.
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