Africa Long Life Study: Prolonged grief disorder in Kenya, Namibia, and South Africa

Prolonged grief disorder is a new mental health disorder recently included in the WHO ICD-11 and DSM 5 TR diagnostic guidelines. Grief is a universal part of the human experience, but unfortunately for some it may become a debilitating, devasting mental health disorder (Killikelly & Maercker, 2017). About 10% of bereaved people experience persistent distressing and disabling grief (Bonanno et al., 2011). Symptoms of PGD include persistent yearning and preoccupation with the deceased, severe emotional pain and significant impairment in everyday functioning. This new disorder definition is based on robust clinical research from European and other Western contexts, but currently there is little evidence for the global applicability of PGD in other cultural contexts, including limited research exploring the nature, prevalence and trajectory of ICD-11 PGD in African contexts. For many years there has been a reliance on assessment measures developed in North America and Europe. A review by Hollifield et al., (2002) found that 78% of studies relied on measures developed in Western contexts to examine refugee mental health. We cannot assume that an assessment measure developed for North American and European populations will be valid and accurate in a different cultural context (Lewis-Fernandez & Kleinman, 1995; Summerfield, 1999). There is very little research on disorder chronicity, predictors of severity and underlying etiological mechanisms following bereavement in contexts outside of Western contexts. Beliefs about mental illness could be qualitatively different, may significantly impact on symptom presentation and their relationship to health services, additionally, and individuals have the right to preserve their own cultural belief systems about health (Hassan et al., 2015). Unique idioms of distress, explanatory models of illness and beliefs about treatment are often overlooked in previous mental health assessment measures (Kirmayer, 2003). When a clinician and patient do not have a shared understanding of the problem this can be a significant and costly barrier to adequate and equitable support. Data from the North American context shows that minorities who are unconvinced that clinicians understand their cultural views are many times likelier to end treatment prematurely and to have shorter psychiatric visits (Aggarwal et al., 2014). Minorities in general are significantly less likely to initiate treatment, to receive guideline-based care, or to fill prescriptions. Alternatively, Kirmayer et al., (2014) found that when using a culturally sensitive mental health consultation clinicians reassessed or changed their treatment recommendations in the majority of cases, used additional treatment in nearly half and changed diagnosis in 23% of cases. The introduction of PGD to the mental health field presents a unique opportunity to explore not only cultural differences in grief, but also to understand how mental health services can be improved through better understanding of culture and societal beliefs. Culturally sensitive mental health assessment offers a window into better cultural understanding and a pathway to building positive experiences with health care services and help seeking. Specific to prolonged grief, different cultural groups many have different descriptions of disorder and indeed different symptoms or clusters of symptoms. Additionally, differences in cultural presentations of distress, the course of disorder and accepted treatment options will impact upon accurate diagnosis, help-seeking and the journey to recovery. The introduction of the new mental health disorder, PGD, presents a unique opportunity: to develop and refine a new mental health assessment measure and model that can be adapted to the cultural context with direct input from intended users for the improved mental health of their communities. In Africa few studies have been conducted on PGD. A study by Kokou-Kpolou et al (2020) found no significant differences in the prevalence of PGD among Togolese and French. However the study identified being male, highly educated and recent bereavement as risk factors in the African sample but not in the French sample. A similar study by Lechner-Meichsner and Comtesse (2022) identified lack of social support, close relationship to the deceased and inability to participate in rituals as the risk factors for PGD among an Arab and African sample. Thurman et al., (2018) reported loss of a biological parent and economic stressors as key determinants of complicated grief among South African adolescents. Literature on prolonged grief disorder in Kenya is still scanty. Ngesa et al (2020) reported grief prevalence of 66% among orphans. However the study did not screen further for PGD. The prevalence of PGD could however be affected by cultural perspective of death where the bereaved continue their bond with the deceased for long through mourning rituals (Njue et al, 2015; Asatsa et al, 2014; Makgahlela et al., 2021). Continuing bonds is a particularly important ritual in the African context (Field, 2008, Fraley and Shaver, 1999). For this project, we would like to focus on the experience of Kenyan, Namibian and South African young adults. The lack of comprehensive PGD literature and data on Kenyan, Namibian and South African (SA) populations is an indication for urgent need of this study. Using data from the Africa Long Life Study, we will address four research questions concerning the prevalence rates, culturally specific symptoms, risk and protective factors related to PGD: 1. Is the International Prolonged Grief disorder scale psychometrically valid in Kenya, Namibia and SA? 2. What is the current prevalence and diagnostic rates of PGD in young adults in Kenya, Namibia and SA? 3. What are possible risk and protective factors that predict severity of PGD symptoms? 4. What are possible unique symptoms of PGD in Kenyan, Namibia and SA adults?