Future care planning of adults with childhood-onset neurodevelopmental disabilities: A scoping review

Abstract

Background

Advances in medicine have increased the life expectancy of adults with neurodevelopmental disabilities (ND). These individuals often reside with aging family caregivers, who also experience age-related health issues. However, many caregivers lack future care plans for their adult children. Thus, there is a pressing need for practical solutions for family-centered future care planning (FCP).

Aims

To summarize the literature on the key components of FCP for adults with ND and their familial caregivers.

Methods and procedures

This scoping review adhered to the Joanna Briggs Institute guidelines. It utilized search terms related to ND and FCP and conducted searches in four databases. Data were analyzed thematically.

Outcomes and results

The initial search generated over unique 9000 articles. The review identified facilitators, such as preferences, family-centered approaches, advocacy, and formal support, which promote effective FCP. Barriers to FCP included caregiver hesitancy, limited resources, the emotional nature of future care planning. Recommendations for addressing these challenges included policy and practice support, healthcare professional education and training, and the active involvement of clients and caregivers in FCP discussions.

Conclusions and implications

This review contributes to the understanding of FCP for adults with ND and offers insights for improving family-centered care planning processes.

What this paper adds?

This paper contributes to the literature by highlighting the pressing need for comprehensive future care planning (FCP) for adults with neurodevelopmental disabilities (ND) and their aging caregivers. With increasing life expectancy for adults with ND, there is a growing population of aging caregivers who often lack proactive FCP. The review identifies common FCP facilitators, barriers, and recommendations, emphasizing the emotional and financial challenges caregivers face. On the macro level, distrust of the public sector, a crisis-driven healthcare system, and a lack of funding and information present significant challenges. On the micro level, emotional attachment to adult children with ND can lead to family instabilities, uncertainties about the "right decision," and feelings of helplessness and guilt among caregivers. It underscores the importance of taking a family-centered approach, involving the adult with ND, and providing healthcare professionals with the necessary education and support to guide caregivers through the FCP process. The paper also highlights the limited existing interventions and calls for further research to address this critical issue. By reviewing a broad range of studies, the paper sets the stage for future research and practice in this area. It offers valuable insights into the components of FCP that can inform recommendations for healthcare professionals, caregivers, and individuals with ND to enhance the continuity of care. In doing so, it aims to address the gaps in the existing literature, particularly the lack of caregiver-informed recommendations for comprehensive FCP.