Developing guidelines to strengthen the human capabilities of parents with children with developmental disabilities using an Interdisciplinary team approach

Abstract

A diagnosis of developmental disability (DD) in a child initiates a lifelong journey for parents, often marked by emotional, physical, and logistical challenges. While caring for a child with DD can be deeply meaningful, parents frequently assume multiple roles such as coordinator, caregiver, and advocate within a complex and fragmented support system. This study explores the role of interdisciplinary team collaboration in strengthening the human capabilities of parents of children with DD, particularly in primary health care settings. Despite the involvement of various professionals such as physiotherapists, occupational and speech therapists, social workers, and paediatricians, coordination across services remains inconsistent. Parents are often left to navigate disjointed systems, juggling services across public, private, and school-based sectors with limited formal communication between providers. Drawing on Martha Nussbaum’s Human Capabilities Approach, which emphasises dignity and well-being, this study aimed to develop evidence-based guidelines for supporting parents through a cohesive interdisciplinary model. A mixed-methods design was employed, combining a systematic review of international interventions with qualitative data gathered from parents, health professionals, and community stakeholders in three historically disadvantaged communities in the Western Cape. Purposive sampling yielded 13–23 parents and 12 professionals, all of whom consented to voluntary participation under strict ethical protocols (Ethics clearance: BM23/1/10, University of the Western Cape).