Social support on caregivers’ mental health

Words by Dr. Jermaine Dambi

Giving birth to a healthy child is the ultimate dream for all expecting couples. Unfortunately, this is not always the case if a child is born with a disability. The dynamics become even more complex if the child is diagnosed with a life-time condition such as cerebral palsy.

Cerebral palsy often abbreviated CP is the most common disability worldwide. Most children with CP often present with multiple medical conditions, for example, seizures are quite common in children with CP. Furthermore, most children often face challenges in performing day-to-day activities such as sitting independently, walking, eating, and bathing amongst other activities. Consequently, children with CP often require life-time assistance from parents or other family caregivers.

A family caregiver is defined as a person who provides most of the care to a child with a disability daily and are not paid for the role. Unfortunately, studies have shown that caregivers of children with CP are likely to suffer from poor mental health. Caregivers are at risk of developing common mental health problems such as depression and anxiety due to the excessive demands of the caregiving role. It is known that caring for a typically developing child is challenging and the dynamics become even more complex if the child has a lifetime disability which requires specialised care.

Multiple factors contribute to poor mental health functioning in family caregivers. Our recent study has shown that myths surrounding the causes of CP are still prevalent in Zimbabwe as in other low-resource settings. Medically, CP is caused by damage to the developing brain. The damage is once-off and does not increase with the passage of time. The damage can happen during pregnancy, for example, if an expecting mother is involved in a road traffic accident, the physical trauma may lead to brain damage as the amniotic fluid may not provide enough cushioning. Further, events during the birth process (e.g. prolonged labour, breech presentation), and after birth (e.g. complicated infections of the brain tissue such as meningitis) may lead to a child acquiring CP.

Of concern is that in certain spheres of our society, myths including that CP is a product of witchcraft and is a sign of bad luck are still common. Some societies also hold to the misconception that childhood disabilities are a product of “ancestral punishment” for maternal promiscuity, a misplaced belief. Such beliefs have in some cases resulted in marriage breakdown and divorces in the worse-case-scenarios. This is rather unfortunate as scientific evidence has shown that caregivers who receive an adequate amount of social support are likely to adjust better to the demands of caregiving.

Cerebral palsy is a complex condition, consequently, most children continuously require continuous access to specialised medical care. Some children may also present with multiple complications such as difficulties in feeding which necessitates specialised diets. It is needless to say that not all children with CP present the same i.e. the severity of the disability and functional limitations vary from one child to the next. For example, some children will be able to walk independently with others being totally dependent on caregivers to move from one point to another.

For severely disabled children, mobility aids such as wheelchairs are essential. Unfortunately, CP is more common in poorer communities, as a result most caregivers are likely to struggle to provide all the child’s needs. Research has also shown that even caregivers in high-income countries are also likely to face economic challenges in meeting the child’s needs as well. For instance, caregivers may not afford specialised day-care and in some instance, parents/caregivers may have to forego some income-generation activities to assume the caregiving role. Providing care may be envisaged as a “circumstantial, full-time” career.  A lack of income-generation thus creates a “vicious-cycle” given the increased financial demands of caring for a child with a life-long disability.

In addition to negative effects on the caregivers’ mental health, providing care to a child with a disability can also lead to physical health problems. Physical ailments such as low back pain and joint pains are common in caregivers. Children with CP as other typically-developing children become heavier as they grow. As such, if caregivers are not taught properly handling and lifting techniques, they are likely to be at risk of chronic pain syndromes. Other physical ailments such as increased blood pressure, lack of adequate sleep and excessive acid secretions leading to stomach ulcers are also common in caregivers. These symptoms are some of the classical signs and symptoms of common mental disorders such as depression. This further illustrates the link between poor physical and mental health. So then what is the solution or how best can the mental health of caregiver be improved?

Improvement of caregivers’ mental health requires a collective, multi-sectorial approach to care. For instance, there is a need to economically-empower caregivers so that they can be self-sufficient given the high costs associated with caring for a child a disability. There is need for public-private partnerships in economic-empowering initiatives such as vocational skills training and micro-financing. Above all there is also need for holistic care approach with the recognition that caregivers’ physical and mental health may be negatively affected. It is imperative that healthcare practitioners and other relevant stakeholders appreciate the need for constantly screening for both mental and medical conditions in caregivers in addition to providing care to children with CP, which is usually the prime focus. More importantly, there is need to develop context-specific, caregiver well-being interventions which are in keeping of resources at disposal.

Jermaine Dambi is a PhD alumni of the African Mental Health Research Initiative (AMARI). AMARI is an African mental health capacity building grant supported through the DELTAS Africa programme, a programme of The African Academy of Sciences being implemented with the support of Wellcome and the UK Department for International Development to train and develop world class researchers and research leaders in Africa.