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
10.35460/2546-1621.2019-0070
- Author:
Michelle G SY
1
;
Maria Minerva P CALIMAG
2
;
Rosalina Q DE SAGUN
1
;
Maria Antonia Aurora M VALENCIA
1
Author Information
1. Section of Child Neurology and Neurodevelopmental Medicine, Department of Pediatrics, University of Santo Tomas Hospital
2. Faculty of Medicine and Surgery, University of Santo Tomas
- Publication Type:Journal Article
- Keywords:
Phenomenology;
Lived experiences;
Caregiver experience
- MeSH:
Transitional Care;
Neurology;
Neurodevelopmental Disorders;
Caregivers
- From:
Journal of Medicine University of Santo Tomas
2020;4(2):486-499
- CountryPhilippines
- Language:English
-
Abstract:
Background and objective :Neurodevelopmental
disabilities in adolescents have signifi cant 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
diffi culties 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 identifi ed 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 confi dence in the medical profession as a whole, and
had a “doctor knows best” attitude that may enable
successful transitioning.
- Full text:1 JMUST 035.pdf
