We Got to Move it, Move it: The Lived Experiences of Family Carers of Youth with Chronic Neurodevelopmental Disorders as They Enter into Adult Health Care

Michelle G. Sy, Maria Minerva P. Calimag, Rosalina Q. de Sagun, Maria Antonia Aurora M. Valencia

May 2020 DOI 10.35460/2546-1621.2019-0070     Access   

Abstract

Background and objective

Neurodevelopmental disabilities in adolescents have significant effects on medical and social function. One of these challenges is their transition into adult care. Parental involvement is critical because these young adults may have more difficulties in making informed decisions independently. Thus, the transition process involves not only the direct health care needs of the young adult, but the needs and concerns of the parents or carers who are instrumental in guiding that process. This study aims to explore the expectations and experiences of family carers of youths with chronic neurodevelopmental disorders who have undergone or are about to undergo transition into adult healthcare in a Filipino-based health care system.

Methods

A descriptive phenomenology was used to gain an in-depth understanding of parents’ perceptions and experiences of their youths’ transition process from a pediatric to an adult health care setting. The results were analyzed manually using Colaizzi’s method, which involves integrating both the destructured and restructured analysis principles of phenomenology. Purposive sampling was used to interview 13 family carers of 13 youths with various neurodevelopmental disorders using a semi-structured interview questionnaire.

Results

Despite the lack of information on the transition process, our study found that carers did not have a strong inclination to resist the transition event. Most of the carers treat the health care provider as a major decision maker in determining the timing and manner of transition, adopting a “doctor knows best” attitude. Several other hindrances and facilitators to successful transition were also identified and are similar to the current literature.

Conclusion

This study provides a greater understanding of carers’ perceptions and experiences of transition care for youths with neurodevelopmental disorders in the local setting. They exhibited trust and confidence in the medical profession as a whole, and had a “doctor knows best” attitude that may enable successful transitioning.

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