News of a newly-diagnosed HIV-positive status has the tendency to lead to negative psychosocial outcomes for persons living with HIV/AIDS (PLWHAs) [1, 2, 3]. Humans depict cognitive, emotional, and motivational deficits on hearing bad news and experiencing what is deemed uncontrollable events [4 p. 347]. This is very likely to apply to PLWHAs particularly, when confronted with the news of being HIV-positive for the first time. Particularly, PLWHAs are known to mostly experience neurocognitive disorders associated with the infection [5], and often experience common mental disorders [6, 7]. This is especially the case when PLWHAs fairly expect or self-perceive negative social reaction such as spousal abuse, dismissal from employment, stigma and discrimination, among others [8]. Peterson and Seligman [4, p. 347] christened these series of responses on such occasions as “learned helplessness phenomenon.”
There are numerous news reports of persons who have committed suicide shortly after an HIV-positive diagnosis. This includes even the case of a female physician from the Eket local government area of Akwa Ibom, Nigeria [9]. Previous researchers note that after the initial diagnosis of a disease believed to be life-threatening, and particularly incurable, patients are known to experience an immediate descent into several distressing psychological and emotional states of mind [1, 2, 10]. These range from disbelief to denial to being utterly scared and shocked. Some even think that their life is not worth living anymore and imagine that indeed, the disease has already taken a final toll on them [2, 3].
This brings to the fore the need to study the reactions of PLWHAs right after their initial diagnosis. Research and programme interventions on adaptation to a new HIV diagnosis provide personal and public health safety-net and are thus needed [2, 11]. These are particularly important among females [2, 11]. Such research and interventions are helpful in educating the newly-diagnosed PLWHAs on HIV [1, 10] and promoting their health [1, 8, 12].
Acceptance of the news of an HIV-positive diagnosis is critical for several reasons [2]. Engagement in and sustenance of HIV treatment and care [1, 2], viral load (VL), CD4 counts [2, 13], and transmission risk [2, 11, 14] are affected by the reaction to the news of diagnosis. Reactions also affect perceptions of stigma and disclosure activity [2, 11]. Conversely, difficulties with accepting diagnosed HIV-positive status has serious potential negative consequences for individuals and the general public [15, 16].
Based on previous related literature, this paper primarily examines qualitatively the immediate reactions of 26 Ghanaian PLWHAs to the first news of their HIV-positive status. Second, it attempts to untangle the situations surrounding these immediate reactions to determine what might have influenced such reactions. Third, the paper delineates the processes that particularly help PLWHAs transition from negative psychological reactions to showing positive reactions and seeking HIV treatment. Fourth, thereby, this paper adds to the core literature on managing the first reactions to an HIV-positive diagnosis and the infection thereafter, and illuminates their importance to public health.
Given the known potential trauma such moments unleash on PLWHAs, knowing the first responses of PLWHAs to their newly-diagnosed infection will help sensitise HIV/AIDS counsellors and healthcare workers who relay results from the first HIV-positive test to clients, to reveal such information more strategically. Hopefully, it will as well guide healthcare workers to express empathy and reduce the burden. More crucially, such studies help with the needed adaptation associated with news of an HIV-positive diagnosis [2, 11, 14]. Consequently, it is hoped that this paper will facilitate a better acceptance of an HIV-positive sense of self which is known to aid PLWHAs to accept, adjust, and more effectively cope with their diagnosis. This will aid them to better manage the complexities of living with the infection [2, 17].
Previous research, particularly, similar qualitative works, have provided insights into initial post-HIV diagnosis engagement in HIV care, merits, and impediments to such engagement [1, 2]. This paper specifies the knowledge to Ghana and more importantly, Ghana’s most HIV/AIDS-affected district [19, 20]. A thorough search on the immediate reactions of PLWHAs’ post-diagnosis reactions in Ghana yielded no known results despite the fact that Ghana has a generalised HIV/AIDS epidemic: more than one percent of the residents have the infection [21]. This paper aims to fill that gap.
As underscored by the above-stated literature, studies and interventions of the behaviours surrounding news of the first diagnosis of HIV-positive status have a myriad of advantages, and thus, the potential to help PLWHAs cope better [10, 11]. Thereby, they facilitate reducing the debilitative effects of the pandemic. This is particularly critical in the context of Ghana’s most HIV/AIDS affected district, the Lower Manya Krobo Municipality (LMKM). These may have the positive effect of changing the story of Ghana’s most HIV-impacted district [19, 20]. For instance, LMKM consistently had the highest HIV/AIDS prevalence in Ghana with the exception of the years 2011 and 2014 [22], and a tie for highest prevalence in 2016 [21].
Prior research has also established the fact that some of the PLWHAs in the LMKM, particularly the females, have very little social resources at their disposal. These include inadequate social support, quite entrenched poverty, distressed housing, and often single-parenting to support their biological children as well as children of extended family [23, 24]. In particular, it is well known that there is severe stigma, discrimination and abuse of PLWHAs in Ghana, including the LMKM [24, 25, 26], and sub-Saharan Africa (SSA) generally [27].
Immediate Reactions to News of HIV Positive Status in Africa
The literature on the immediate reactions to initial diagnosis of HIV-positive status is also sparse, and a majority of what research there is comes from South Africa. Such findings overwhelmingly corroborate each other: immediately after being diagnosed HIV-positive, PLWHAs studied depict deep negative emotions. Visser et al. [28] studied the phenomenon in South Africa, using a semi-structured interview of 293 pregnant women who were undergoing HIV test during antenatal care. On hearing the news, those who tested positive were shocked, and got frightened that they would be abandoned and discriminated against.
Fabianova [29, pp. 199-200] undertook a longitudinal study in Nairobi, Kenya, on the psychosocial aspects of being PLWHA. When the respondents who visited VCTs were first informed of their HIV-positive status, 89% of them felt sad due to their HIV-positive status, 60% had feelings of fear and anxiety, 30% felt angry, 25% felt distressed, and 15% cried. Additional, psychosocial behaviours exhibited by the respondents included grief, guilt, hopelessness, helplessness, anger, disbelief, self-blame or blamed others, and aggression towards a counsellor. Their sadness was mostly in reference to close relatives who had died of AIDS. Their fears related mostly to the loss of their social position. Other fears surrounded loss of life, ambition, sexual relations, independence, physical performance, and financial stability. While Fabianova [29, p. 201] observed from the extant literature that suicide is a common reaction for persons who are first informed of their HIV/AIDS status, her study found that less than 1% of participants attempted suicide on hearing of their confirmed HIV-positive status. Nevertheless, most of her respondents already considered themselves to be “walking corpses” and even visualised their funeral and grave.
Rankin and colleagues’ [30] study in Tanzania concentrated on HIV-positive related stigma among PLHWAs. On hearing of their HIV-positive status for the first time, respondents thought of dying. Their reason? They felt they would be unable to cope with the shame and stigmatisation from family, friends, and the rest of society. For instance, most respondents lamented fear of being labelled using stigmatising language such as “walking dead.” Greeff et al.’s [27] study in five Africa countries (Lesotho, Swaziland, South Africa, Malawi, and Tanzania) was on disclosure of HIV. Their findings were not different from those of Rankin et al. [30]. Their respondents’ first reactions on hearing of their HIV-positive status were a cocktail of negative psychological emotions: expected stigmatisation, fear of death, and feelings of shame. As many as 46% of Wanyenze et al.’s [8] respondents in Uganda expressed fears of stigmatization, abuse and discrimination from their significant others and the rest of society when they were first informed of their HIV-positive status. Rankin and colleagues [30] argued that such negative reactions have impacted HIV testing programs across SSA negatively: most respondents were privy to suicide cases among infected persons stemming from the initial news of being HIV positive.
Skinner and Mfecane’s [15] study conducted in South Africa revealed that upon hearing the news of HIV-positive status at first, the majority of respondents’ reaction was fear that it would interfere with their sexual life: they, particularly the males, feared that they would be unable to have sex. Ross et al. [31] concluded that most of their respondents’ first reaction on hearing of the news of their HIV-positive status was shock, disbelief, denial and finally, internalised anger.
Factors related to the initial diagnosis of HIV/AIDS
Fabianova [29] enumerated several explanatory factors that unpacked her respondents’ reactions to their initial diagnosis of HIV. These included gender, level of preparedness of a client in the pre-testing session, and type of sexual relationship they were in. Others included levels of general knowledge of HIV/AIDS, and HIV/AIDS-related stigma in the community. Fabianova [29, p. 199] discovered that males responded to the initial HIV/AIDS diagnosis with anger, disbelief, and aggression. The females cried, got shocked, “swallowed big lumps of air, saliva subconsciously, shook both their hands in refusal and blame [sic] the others almost immediately.”
Other key explanatory factors for Fabianova’s [29, p. 199] respondents’ immediate reactions included concerns about “lack of immediate elaborate support structures”, extent of level of awareness about HIV/AIDS, level of HIV/AIDS-related stigma, availability of antiretroviral therapy (ART), and support groups to enable them move on with their lives. Feelings of guilt for the infection were explained by whether the individual felt his/her lifestyle exposed him/her to it, and type of sexual involvement they were engaged in. They felt guilty that they would infect a spouse if they were married. If they were in an unstable/non-married relationship, they did not feel guilty, and shared the blame with the casual sexual partner. Sixty-two percent blamed their partners or the environment with the excuse that they stayed loyal to their partners. Fabianova’s [2911, p. 200] respondents who tested on their own volition did so based on their own or a partner’s “failure”, poor health or “accidental happening”, or work commitments.
Makoni et al.’s [32] study in Zimbabwe found that being afraid to know one’s HIV status predicted unwillingness of their respondents to take tests to determine their status. Among PLWHAs in Southern Tigray, Northern Ethiopia, the main factors that explained late diagnosis of the infection were mostly, feeling healthy, fear of stigma and discrimination, and using traditional medicine [12]. Among Assen et al.’s [12] respondents, late presentation for HIV diagnosis positively correlated with ambulatory functional status, the use of Khat (an Arabian herbal shrub), being a Muslim, and being bedridden.
Furthermore, Beyene and Beyene’s [33] study in a referral hospital in Bahir Dar, Northern Ethiopia, which explored factors that explain late diagnosis of HIV among their PLWHA respondents concluded that lack of formal education, internalised stigma, having low level of knowledge about HIV/AIDS, and lack of social influence by significant others to undertake voluntary counselling and testing (VCT) significantly predicted late HIV diagnosis.
Wanyenze et al.’s [8] research at Uganda’s largest national referral hospital, Mulago hospital, to explain reasons for late initial diagnosis for HIV showed that the most important factor underpinning initial diagnosis was contact with/receiving care from an orthodox healthcare facility as against from a non-medical facility (traditional healer or herbalist, or even pharmacies and drug stores). Additional factors such as older age (31-45 years, compared to those 18-30 years old), low perceived risk of having HIV until one becomes ill, and perceived fears of negative social reaction towards them if they were diagnosed HIV-positive, significantly explained respondents reporting late for the initial diagnosis with HIV/AIDS.
Schlebusch and Govender [34] studied suicidal ideation among a hospital-based PLWHAs in South Africa right after they had been diagnosed seropositive. The vast majority (83.1%) of their respondents had elevated suicidal ideation soon after their diagnosis. Being a younger male (less than 30 years) had significant association with elevated levels of suicidal ideation. In Ghana, the vast majority of PLWHAs Koka et al. [16] studied in the Central Regional hospital, were diagnosed for the first time with HIV mostly after they had reported to the hospital with persistent HIV/AIDS related opportunistic infections (mostly, frequent fever, followed by frequent coughing, then frequent diarrhea, or skin rashes). VCT was the least factor that led to their respondents’ initial diagnosis. Koka et al. [16] asserted that stigmatisation and discrimination against PLWHAs was the main reason which prevents Ghanaians from checking their HIV status.
Opportunities for use of prevention of mother to child transmission (PMTCT) services present a window for the first diagnosis of women and newborns for HIV. However, globally, low utilization of services for maternal, newborn and child health (MNCH), and the non-routinisation of VCT services as part of MNCH services has been blamed for the often non-use of this opportunity. Particularly, missed opportunities for diagnosis during intrapartum, i.e., use of assisted delivery services, has been highlighted. Others are weak health care systems, and failure to monitor, track/follow up women and children post-delivery [35].
The interphase between depression and HIV/AIDS
The theoretical framework adopted for this paper, the theory of hopelessness, is grounded on depression. This necessitates a brief review of the literature on depression, including depression in sub-Saharan African settings. The impact of depression on health is critical, and said to be worse than that of other chronic diseases, such as hypertension and diabetes [36]. Depressive disorders are an important cause of mortality, for instance, in their association with suicide [36]. Depression is currently one of the five leading causes of the disease burden internationally, except in sub-Saharan Africa (SSA) [36]. Depressive disorders are projected to be second only to HIV/AIDS as the cause of disability by 2030 [36, 37]. Given these, researchers note that depressive disorders and other common mental health disorders (CMDs--depression, anxiety and somatization) were critically linked to the Millennium Development Goals, particularly gender equity, poverty, HIV/AIDS and maternal and child health [36, 38].
Globally, a strong relationship exists between suicide and HIV/AIDS [39]. They constitute two of the greatest healthcare challenges and are applicable to Africa’s populations as well [34,40]. Depression is a common interphase between suicide and HIV/AIDS [29, 34, 39] Importantly, depression is the most diagnosed psychiatric disorder among PLWHAs. Depression also serves as a risk factor for the progression of HIV/AIDS. In fact, HIV-1 is associated with metabolic and immunologic disturbances. Among other bio-chemical alterations, PLWHAs have changes in their oxidant/antioxidant balance [7, p. 1].
In African settings, a growing appreciation of an important link between CMDs and HIV/AIDS has been established [7, 29] as well. HIV has unleashed “a significant strain” on mental health in Africa [36, p. 61; 41]. The huge burden of HIV/AIDS in SSA accounts for 16% of depression in the sub-region [36]. Fabianova [29] documented a range of between 40%-75% depression among HIV/AIDS orphans aged 10 years to adolescents who are themselves HIV-positive. She notes that HIV/AIDS presents a risk factor for depressive disorder among adolescents. Psychologically, HIV/AIDS is stigmatising, with poor prognosis in settings where antiretroviral therapy is scanty. In the Ghanaian cultural context, intersubjective processes of labelling (such as with witchcraft or discrediting notions of a particular illness) is a key underlying factor for self-discrediting definitions or self-stigmatisation, which is responsible for depression [42, p. 136].
Alternatively, a neurobiological association exists between HIV and CMDs: “the HIV virus has quite specific detrimental effects on neuronal function” [36, pp. 61, 65]. Evidence-based reports in African settings and other developing nations (Sao Paulo, Bangkok, Kinshasa, Nairobi, and Ethiopia), found both more symptoms and a higher prevalence of depression among symptomatic PLWHAs than among non-symptomatic or HIV-negative persons [36]. Tadios and Davey’s [43] study from Ethiopia, found an association between depression and self-reported lower levels of anti-retroviral therapy. Nevertheless, Byakika-Tusiime et al.s’ [44] study in Uganda which used a diagnostic assessment for depression, reported no association between depression and adherence to antiretroviral therapy.
Theoretical framework: the hopelessness theory
The hopelessness theory is applied to this paper. It is a diathesis-stress theory which posits that organisms express some form of cognitive and emotional deficits after experiencing a bad event. The theory argues that three depressogenic inferential styles serve as risk factors of depression [45, 46]. These are the tendency to attribute a bad event to a global or stable cause; the tendency to perceive bad events as having many disastrous consequences; and the propensity to view oneself as flawed or inefficient [46, 47]. Making negative inference upsurges the possibility of hopelessness while feeling hopeless makes depression inevitable. With this explanation, the theory assumes hopelessness as a critical underlying factor to depression. Adding to the causal explanation, Seligman [48] stated that the symptoms, cure and prevention of a bad event also model depression.
Despite the fact that the theory seems accurate in explaining depressive symptoms in human and animal species both in laboratory and natural settings, critics argue that the theory is inadequate in explaining the generality and chronicity of depression. This critique informed the modification of the theory along its attributional lines: the causal--internal/external, stability/instability and global/specific explanations attributed to the bad event [4, 49]. The central prediction of this revision shows that individuals who explain negative events with internal, stable and global factors are more likely to exhibit depressive symptoms when experiencing bad events.
In recent times, HIV is classified as a lifestyle and chronic/lifetime virus. Although incurable, HIV can be prevented. For this reason, individuals infected with the virus tend to blame themselves either for living a reckless lifestyle or having to live a lifetime with the many disastrous ramifications of the virus. Govender and Schlebusch [40] added that the attribution of HIV to a negative life event is mainly because an HIV-positive diagnosis leads to marital and financial problems, stigmatisation or discrimination by family and community, and/or problems in accessing health services.
Making such negative inferences exacerbate the feeling of hopelessness and increases the likelihood for individuals to show depressive symptoms. The loss of control over one’s life, fear of the future, feelings of helplessness and internalised stigma which lead to guilt and self-blame, are common reactions PLWHAs exhibit upon receiving an HIV-positive result [11, 50]. In societies like Ghana, where HIV is associated with nonconformity to societal expectations and/or sexual promiscuity, PLWHAs may be more exposed to adverse emotional and cognitive symptoms after receiving an HIV-positive report. To this end, this study seeks to explore the psychopathological manifestations among PLWHAs upon receiving an HIV-positive test report, and to highlight feasible public health responses to managing these.
The application of the hopelessness thesis to HIV-positive populations in SSA is not new. Govender and Schlebusch’s [40] study in Kwa-Zulu Natal, South Africa, applied Beck’s Hopelessness Scale and Beck’s depression Inventory [51] to their assessment of the correlation between depression, hopelessness, and suicidal thoughts in PLWHAs. Schlebusch and Govender [34] used the same inventories to study PLWHAs in a University-affiliated hospital in South Africa. Primarily, they studied the prevalence of risk of suicidal ideation in PLWHAs immediately after their first diagnosis. Kylmä et al. [50] also studied the full gamut/dynamics of the concept of hope (hope, despair, hopelessness) among PLWHAs. Their study yielded information on how PLWHAs’ perceptions of hope could facilitate their clinical care.