Evidence Briefs

Provide a synthesis of the best available evidence on a variety of priority topic areas as identified by leading infectious disease experts. We systematically explore the published literature using a comprehensive search strategy to identify relevant research on infection prevention, management, and control. For more information on our search strategy of the published literature, click here.
McMaster University
NCCMT

Fear, distress and isolation

Mar 28, 2017

Author(s): Stephanie Vendetti-Hastie, RN, CIC, Kristin Read, MPH, & Dr. Maureen Dobbins, PhD, RN
Expert Reviewer(s): Dr. Mark Loeb, MD, MSc, FRCPC & Dr. Dominik Mertz, MD, MSc

The OutbreakHelp Evidence Briefs aim to provide short summaries of the available evidence related to priority topic areas identified by leading infectious disease experts. Content for the Evidence Briefs were developed using a comprehensive and systematic search of the academic literature from inception to December 31st 2015 (more recently published information on this topic may be available here). All results were screened for relevance using pre-defined inclusion and exclusion criteria. Included articles must have met the following criteria: 1) specific to the topic of Ebola Virus Disease (EVD), 2) human research or research with real-world applicability, 3) study in a peer reviewed journal, and 4) published in either English or French. Articles identified as relevant were tagged with priority topic areas and assessed for quality using abbreviated versions of appropriate critical appraisal tools; a 5-star rating scheme was applied to articles as relevant. Relevance screening, category tagging, and critical appraisal were independently conducted by two raters and conflicts were resolved through discussion. A thematic analysis was performed on included articles by charting and then categorizing common concepts and topics discussed in the literature. Results are summarized in a narrative. The following Evidence Brief discusses psychosocial considerations focusing specifically on evidence related to fear, distress, and feelings of isolation among EVD survivors, contacts, family caregivers, and healthcare workers.

Main message

Anxiety, fear and panic are common emotions elicited by EVD outbreaks and are often cited as triggers for emotional and behavioural responses to EVD amongst survivors, contacts, caregivers and health care workers working with EVD. Both in Ebola affected areas and abroad, patients suspected of having EVD were feared and avoided as were the healthcare workers who cared for them.

Fear, distress and feelings of isolation among EVD survivors, contacts and family caregivers

In a 2015 descriptive cross-sectional study conducted at an Ebola Emergency Operation Centre in Nigeria the prevalence, pattern and factors associated with psychological distress among EVD survivors (N=4) , contacts (N=93) and family caregivers  (N=20) were studied by analyzing questionnaire responses that assess psychological distress (General Health Questionnaire) and social support (Oslo Social Support Scale). The most frequently occurring psychological distress among all respondents were lack of concentration and lost sleep over worry. Lack of concentration and lost sleep over worry were reported by survivors at 100% and 75%; among contacts at 35.5% and 33.3%; and among caregivers at 40% and 25% respectively.  Having a relative die from EVD during the outbreak was significantly associated among all respondents with “feeling unhappy or depressed” (OR=6.0, 95% CI, 1.2-32.9); while being a health worker was protective (OR=0.4, 95% CI, 0.2-0.9). Having no tertiary education was significantly protective against not being able to concentrate (OR=0.3, 95% CI, 0.1-0.7). In this study, limited social support (defined as less than 3 people you can count on in a serious situation), difficulty getting help from neighbors, and people showing little concern were reported among all participants at 18.8%, 14.5% and 6.8% respectively (Mohammed, et al., 2015).

Three studies used a phenomenological qualitative research design. This research design encourages researchers to explore the experiences of EVD survivors, contacts and caregivers through their respective perspectives and reflect on the various meanings derived from these different experiences (Locsin, Barnard, Matua, & Bongomin, 2003). In 2001, seven Ugandan healthcare providers who cared for EVD patients were asked to describe the experience of “waiting to know” whether or not they would show signs and symptoms of EVD.  The following thematic descriptions emerged:

●      Corporeality (lived body): fear of dying alone; premature death; being in isolation/ feeling isolated; exhibiting psychosomatic illness, hope for life but anticipation of death.

●      Relationality (lived other): grief over loss of loved ones; fear of infecting others; not knowing what to expect, fear of losing family members; dissipation of friendships.

●      Spatiality (lived space): trusting no one; enduring life while agonizing over death; anxiety; strength through prayer.

●      Temporality (lived time): helplessness/hopelessness over time, fear and worry over infecting others; being victimized; risk of death; expectation of death; slow passing of time (Locsin & Matua, 2002).

These themes are reflective of Ugandan EVD survivors (N=5) and their family caregivers (N=7) who also describe:

●      Fear, ostracism and stigmatization

●      Loss of possibilities for survival and well-being

●      Lingering nature of trauma (fear, panic, sadness)

●      Psychosomatic manifestations

●      Inescapability of the EVD experience (Matua & Van der Wal, 2015)

The experience of watching the death of others, struggling to survive, the ecstasy of knowing that they will survive and struggling to live in the aftermath of EVD, being isolated from family and friends, and being discriminated against because of survival, are common themes in the qualitative literature (Locsin, et al., 2003).

The experience of EVD patients (N=35) as they progressed through illness is described in a qualitative study from 1998.  Prior to diagnosis, participants described feelings of fear of falling seriously ill (50%), denial (47%), fear of being accused by neighbors (21%) and shame (15%). While 80% of people shared their anxiety with family members, 35% tried to escape from their family or neighborhood. Twenty-six percent took traditional medicine and 9% downplayed their symptoms when seen by medical staff. During acute illness 56% were afraid to suffer, 53% afraid to die and 41% feared abandonment by family. All patients were helped by their belief in God. During convalescence 35% felt rejected by society (including family and friends), 32% saw their disease as having been divine punishment, and 39% reported intense grief for lost family members. All felt that their experience strengthened their belief in God (De Roo, et al., 1998).

Fear, distress and feelings of isolation among healthcare providers (HCP)

Fears and anxiety related to EVD and EVD risk are not limited to survivors, contacts and caregivers but are also prevalent among HCPs. Severe psychological stress related to separation from normal supports such as colleagues, family and friends; fear of infection due to lack of personal protective equipment and other resources; fear of infecting others; being feared by others; and witnessing death were described in a 2005 qualitative study of nurses involved with EVD response both in Uganda and the Republic of Congo. Despite these stressors nurses described their professional commitment to their patients and to their profession. Knowledge was described as the enabling factor (Hewlett & Hewlett, 2005).

A German cross sectional study compared health care quality of life among HCPs caring for an EVD patient in a biosafety unit of a medical centre (n=32); those caring for non-EVD patients in the same medical centre (n=42); and laboratory staff working in a biosafety unit at a research facility (n=12). Healthcare providers who cared for an EVD patient showed a significantly (p=0.004) higher degree of social isolation (µ= 0.60) than the non-EVD (µ = 0.08) and laboratory groups (µ = 0).  These workers also reported significantly higher impairments in the physical component of the global health rating. A strong predictor of health related quality of life was the perceived lack of knowledge about EVD; that is, a lack of knowledge about EVD was associated with lower physical and mental health related quality of life scores (Lehmann, et al., 2015).

The severity of potential mental distress among 52 Liberian medical staff working at the China Ebola Treatment Unit was evaluated. Using a standardized questionnaire (SCL-90-R), results were classified into 9 psychological dimensions. Overall, the level of mental distress was not very serious. However, staff responsible for cleaning and disinfection had significantly higher levels of obsessive-compulsive behaviour, anxiety, phobic anxiety and positive symptom total than other categories of staff. In terms of gender differences, male participants showed significantly more interpersonal sensitivity, paranoid ideation, and positive symptom total (31.17 ∓ 19.44 versus 18.14 ∓ 15.08, p < 0.05) as compared to female participants (Li, et al., 2015).

Conclusion

Fear and anxiety played a large role in the lives of EVD survivors, contacts, family caregivers and healthcare providers during an outbreak situation and grief also appears to be a major influence for survivors, contacts, and family members.  It is important to consider these specific psychosocial elements during an outbreak in order to better inform patient management and care practices as well as issues related to occupational health. 

These types of emotions elicited in an EVD outbreak, such as anxiety and fear, may also lead to behavioural responses to the outbreak [Ogoina]. For more information on this psychosocial aspect of EVD, check out these two Evidence Briefs from OutbreakHelp:

References

De Roo, A., Ado, B., Rose, B., Guimard, Y., Fonck, K., Colebunders, R. (1998). Survey among survivors of the 1995 Ebola epidemic in Kikwit, Democratic Republic of Congo: Their feelings and experiences. Tropical Medicine & International Health3(11), 883-885.­ [OutbreakHelp Star Rating: 3]

Hewlett, B. L., Hewlett, B. S. (2005). Providing care and facing death: Nursing during Ebola outbreaks in central Africa. Journal of Transcultural Nursing, 16(4), 289-297. [OutbreakHelp Star Rating: 2.5]

Lehmann, M., Bruenahl, C.A., Addo, M.M., Becker, S., Schmiedel, S., Lohse, A.W., Schramm, C., Löwe, B. (2015). Acute Ebola Virus Disease patient treatment and health-related quality of life in health care professionals: A controlled study. Journal of Psychosomatic Research. doi:10.1016/j.jpsychores.2015.09.002. [OutbreakHelp Star Rating: 4.5]

Li, L., Wan, C., Ding, R., Liu, Y., Chen, J., Wu, Z., Liang, C., He, Z., Li, C. (2015). Mental distress among Liberian medical staff working at the China Ebola treatment unit: A cross sectional study. Health and Quality of Life Outcomes, 13(156). doi: 10.1186/s12955-015-0341-2. [OutbreakHelp Star Rating: 4.5]

Locsin, R.C., Barnard, A., Matua, A.G., Bongomin, B. (2003). Surviving Ebola: Understanding experience through artistic expression. International Nursing Review, 50(3), 156-166. [OutbreakHelp Star Rating: 4.5]

Locsin, R.C., Matua, A.G. (2002). The lived experience of waiting‐to‐know: Ebola at Mbarara, Uganda–hoping for life, anticipating death. Journal of Advanced Nursing, 37(2), 173-181. [OutbreakHelp Star Rating: 5]

Matua, G. A., & Van der Wal, D. M. (2015). Living under the constant threat of Ebola: A phenomenological study of survivors and family caregivers during an Ebola outbreak. Journal of Nursing Research, 23(3), 217-224. [OutbreakHelp Star Rating: 4.5]

Mohammed, A., Sheikh, T.L., Gidado, S., Poggensee, G., Nguku, P., Olayinka, A., Ohuabunwo, C., Waziri, N., Shuaib, F., Adeyemi, J., Uzoma, O., Ahmed, A., Doherty, F., Nyanti, S.B., Nzuki, C.K., Nasidi, A., Oyemakinde, A., Oguntimehin, O., Abdus-Salam, I.A., Obiako, R.O. (2015). An evaluation of psychological distress and social support of survivors and contacts of Ebola virus disease infection and their relatives in Lagos, Nigeria: A cross sectional study− 2014. BMC public health15(1), 1-8. [OutbreakHelp Star Rating: 4]

Ogoina, D. (2016). Behavioural and emotional responses to the 2014 Ebola outbreak in Nigeria: A narrative review. International Health, 8(1), 5-12. [OutbreakHelp Star Rating: 1]