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.