Social Capital for Caregivers of Children With Neurodevelopmental Disorders in Kumasi, Ghana; a Multidisciplinary Approach to Patient and Caregiver Wellness

AIMS: To demonstrate the role of psychosocial support groups in providing social capital for caregivers of children with neurodevelopmental disorders as an integral part of service delivery. METHODS: A descriptive prospective pilot study was conducted at the child neuropsychiatric joint clinic of the Komfo Anokye Teaching Hospital. A support group was initiated for caregivers of children attending the clinic, with the support of a multidisciplinary team of two psychiatrists, a paediatric neurologist, nurses, a clinical psychologist, an occupational, art, and speech therapists. Fifty (50) caregivers enrolled in the support group. A total of three face-to-face psychoeducational sessions, monthly Whatsapp discussions on topical issues of interest to caregivers and an outdoor social event were conducted over a period of one year. During sessions, healthcare providers provided psycho-education about illness management and coping skills for caregivers. Caregivers shared their experiences for the purposes of peer-peer learning and peer support. Information was gathered from caregivers on their psychosocial needs through open forum discussions and a questionnaire administered needs assessment. A retrospective evaluation of the support group intervention among caregivers was carried out using a mixed method, after a year's participation in the support group. RESULTS: From pilot observations of 30 of the caregivers who completed the evaluation, 85% rated the support group as highly beneficial, 10% rated as beneficial, and more than 95% of them will recommend the service to other caregivers. Caregivers perceive support groups as providing a forum to empower providers to educate caregivers about their well-being, de-stigmatize mental health, and strengthen the trust between caregivers and providers. They may also provide increased opportunities for respite and relaxation. CONCLUSION: There must be improved social capital for caregivers of patients with chronic illnesses, with emphasis on coping during periods of stress and change. Caregiver and peer support groups are critical to improved psycho-social well-being and smooth service delivery for children with neurodevelopmental disorders and their families.