The impact of chronic illness such as SCD on individuals may be grouped into a set of illness-related tasks: adjusting to the symptoms and incapacities; maintaining adequate relationships with health-care providers; and managing the emotional and social consequences of the illness [11]. The extent to which individuals are affected by a chronic illness may therefore be determined by their coping responses since dealing with its continuous demands requires the acquisition of new skills and modifications to daily life. Previous studies on psychosocial aspects of SCD generally examined the extent of its impact on children and adults, the ways in which affected families' function, and the resultant psychological adjustment. Some studies demonstrated that SCD is a risk factor for maladjustment (psychosocial functioning) in children and adolescents [12–15]. Earlier research also showed that rates of poor psychological adjustment of children with SCD remained relatively constant over time, however there was less stability in child psychological adjustment reported by children as opposed to reports by mothers [16].
This study sought to explore the psychosocial impact of SCD in a Nigerian population. The results support the notion that society's attitudes and perceptions had a psychosocial impact on people with SCD. Health beliefs could be influenced by external factors such as advice given by health workers, family support, and work responsibility. Beliefs can also be influenced by their culture. For example, it has been suggested that Nigerians have tried religious healing (prayer) as an alternative approach or in addition to routine medical treatment [17]. This may be due to causes of illness being attributed to "divine retribution" or the supernatural. There are cultural variations in concepts of health and illness relating to: views of illness, causes of ill health; acceptable treatment, types of treatment believed to be effective; reaction to symptoms, use of appropriate services. Within the Nigerian context, such beliefs lead to negative perceptions and attitudes about SCD.
About three-quarters of the study population were students, and over a third were adolescents aged 14 to 18 years. Anecdotal evidence suggests teasing and bullying are common complaints among school going children with SCD. This was reported in 23% of the study population. Other major psychosocial problems experienced by young people with SCD during their school going years have also been described in focus groups [18]. Important issues include fear of early death, fear of talking to friends and teachers about the condition, embarrassment about bedwetting and reluctance to take part in school trips because of this, teasing by colleagues due to jaundice and associated discolouration of their eyes, and anger should ill-informed staff consider the child as lazy and wanting to keep away from school activities. Anxieties that young people with SCD experience at school may result in the development of a negative image of themselves, teachers and school staff.
Mood is an important consequence of SCD. People with SCD commonly report low self-esteem and feelings of hopelessness as a result of frequent pain, hospitalisations, and loss of schooling (in children) and employment (in adults). These accounts could indicate depressive symptoms. Some studies have revealed anxiety and depression in children with SCD [19], and depression in adults [20]. Consistent with the literature, a considerable number the patients in this study had feelings of depression. Feelings of anxiety and self-hate were uncommon. Ohaeri and colleagues [8] in their work with 170 patients aged 11-20 years, in Nigeria, also noted that about 88% were worried and 55% has depressive thoughts about their condition.
There is considerable variability in the ability of people with SCD to cope with their condition. People with SCD experience different levels of health, and such variations can lead to differences in psychosocial functioning. Some people cope relatively well, attend school or work, and are active physically and socially. Others cope inadequately' leading more limited and secluded lives. Nonetheless, this may not necessarily be a consequence of severity of their condition, and the reasons for these should be sought and addressed. Quality of life in people with SCD may therefore be more impaired than that of the general population.
There are some limitations to the study. The use of dichotomous questions was mainly to address possible literacy problems in some patients who may have found it difficult to grade their responses on a Likert type scale, thus avoiding confusion. Dichotomous questions are useful in situations where the intention is to direct participants to express a clear opinion between opposing perspectives. However, a major drawback is that questions have only fixed alternatives, that is 'Yes' and 'No' in this case. Closed questions do not allow respondents to qualify or explain their answers, which may lead to bias in the interpretation due to the categories imposed. No standard questionnaires for the psychosocial impact of sickle cell disorder were identified from previous research, nor were there generic psychosocial impact measures in the chronic illness literature that could be employed for the purpose of this study.
Furthermore, information obtained was cross-sectional, longitudinal data would have enhanced the results. More information on socio-economic status would have been useful. Also, the opportunistic selection of patients in a clinic setting may have been biased; a community-based study may have yielded different results, given that the views of patients not receiving medical treatment could be different. Nonetheless, the study contributes to our understanding of the psychosocial impact of SCD within the African setting.
The findings of this exploratory study indicate that there is a need to develop appropriate psychosocial interventions within a global context. The aim should be more public education about SCD to change beliefs, attitudes, and stigma as a starting point. This should be followed by other interventions that are tailored depending on access to health care at different levels, and in different settings. In developing countries such as Nigeria, the focus would be initiating basic psychosocial interventions by non-specialised health workers in a primary care team at a Community Health Post (Level 1) or Primary Health Centre (Level 2), where psychologists or social workers are not be available. This would be in line with the WHO's current priority of primary care as a hub of coordination for person-centred care [21].
Within the global context, the aims of psychosocial interventions in chronic illnesses such as SCD are to help reduce negative thoughts and feelings about the condition, and encourage the acquisition or maintenance of coping strategies. In the case of SCD, psychological therapies should be offered as standard care in the management of SCD adjunctive to routine medical treatment, where studies of these therapies have shown encouraging results [22]. The overall goal is to help patients cope better, fulfil roles, and to achieve better quality of life. These interventions should be age-appropriate, and available in both hospital clinics and community-based settings depending on access.