Psychological problems of SCD
Apart from the clinical illness, SCD patients often suffer from mental illness in the form of stigma due to fear of non-acceptance by the community, fear education, livelihood and marriage (figure 1). Additionally, children’s psychological health is negatively impacted by the disease’s chronicity, hospital stays during the pain episodes, withdrawal from normal social environments, bullying at school and poor focus on academics which is upsetting for both children and their parents or guardians. This stigma may lead to psychological distress and disempowerment. Several studies show that depression among SCD patients is more susceptible as compared to the general population. In a PiSCES study, it was discovered that 6.5% of people with SCD have anxiety and 27.5% have depression. An individual with SCD, anxiety and depression were associated with regular episodes of pain which lead to poor physical and mental health. Therefore, regular monitoring of depression and anxiety in SCD patients along with their treatment is recommended5 . Furthermore, caretakers of SCD patients (1-10 years) describe a wide range of difficulties in most categories, including everyday tasks, financial hardship, quality of life (QOL), depression and parent’s adjustment related to child illness and therefore a mechanism for managing psychological issue pediatric SCD patients in needed6 . A study from Nigeria shows that most participants believed that society had a poor perception and attitude towards SCD patients. In the adolescent group (14-18 years) it was found 23% of the population had complained of teasing and bullying in school for SCD students. Additionally, 55% of SCD patients of adolescent age were depressed and 88% were worried for their health condition7 . Another study from Nigeria revealed that adolescents with SCD generally express emotional disturbance and misbehavior. Their psycho-social problems include limitations on career options and difficulty in finding a spouse.
Further, findings suggest that social workers ought to work in the health sector to assist adolescents with SCD during their health examination8 . In a study from Brazzaville, it was found that in children/adolescent group 76.1% had disempowerment, 29.9% had anxiety and 5.5% had depression. Study suggested that stronger focus on education, behavior modification, and communication is necessary to improve the quality of care due to the prevalence of psychiatric illnesses in children and adolescents who live with SCD9 . A previous study from India found that children with SCD have more psychological issues than children without SCD. Further findings suggested that establishing health care services for children with SCD, facilities for early detection and treatment of psychosocial disorders should be included10 . Another study from India found that SCD patients had considerably lower health-related quality of life (HRQoL) than other chronic non-communicable disorders11 .
At this state, patient needs a support pillar for assuring good quality of life. Patients with SCD frequently experience psychological issues as a result of the effects of their pain and other symptoms on their daily life and how society views them. Both children and adults with SCD were shown to have psychological complications including ineffective pain management techniques, anxiety, sadness, neurocognitive impairment, and a poor quality of life due to functional limitations in day-to-day life. Additionally, one of the most significant causes of psychological stress for young people is marriage or finding a spouse. Without knowledge and awareness of sickle cell inheritance, it can be challenging to choose a spouse free of the disease or a characteristic, as well as to determine whether or not children will be born with the illness in the future. The overwhelming part is that patients with the condition (SCD) continue to face difficulties in managing the disease.
Over the course of a generation, medical care has significantly increased patients’ quality of life and lifespan. However, the current situation regarding the recognition of the clinical implications of psychological complications and their management within a multidisciplinary context continues to be unsatisfactory12 . There is a need for support pillars at different levels for coping with the disease. Support pillars are the system of social and psychological aspect that is directly linked with the patient capability and the family for coping-up the disease effectively by providing support.13The network of family, school teachers, self-help groups (SHG), traditional healers (in certain societies like the indigenous populations), genetic counselor and most importantly the affected person itself is crucial for the effective management of SCD. They all work together to make quality care at social and personal levels to make permeate choices for premarital and preconception counseling to have healthy children with accessibility of preventive measures run by the government.