Bladder exstrophy-epispadias complex: patient and family psychosocial support

Abstract

Individuals with bladder exstrophy-epispadias complex (BEEC) and their families have unique needs best served by a multidisciplinary team of medical, surgical, and psychosocial providers. Global health initiatives to improve the overall health outcomes of this population are vital to share knowledge, cross-train providers, enhance collaboration partnerships, and address this population’s unique needs. The Association for the Bladder Exstrophy Community (A-BE-C) and its volunteers have developed an initiative in Uganda to create a sustainable model of care in East Africa. Our dedicated group of volunteers and experienced providers intend to address the medical and psychosocial needs of the BEEC population. Given the complexity and psychosocial implications of these conditions, we firmly believe that the overall health outcomes of these patients rely on appropriate and life-long psychosocial services.

Therefore, our volunteer team consists of psychosocial providers and patient advocates. We have partnered with local physicians, nurses, social workers, community health workers, and disability rights advocates to create an annual comprehensive programme. In turn, our treatment plans are patient-centred, and the team collaborates to address medical and psychosocial needs simultaneously. In conjunction with the medical staff of nurses and physicians, the psychosocial team implements appropriate interventions to address barriers to care and self-image, improving independence and strengthening the family’s hope and motivation. Our goals are to address and improve overall health outcomes, reduce shame and stigma, and support individuals with BEEC to reach their full potential.