Background and Significance: Transition to adult care is often disorganized as a result of barriers that include, emotional and cognitive developmental challenges, lack of individual and family- centered social supports, difficulties in communication and coordination of care between pediatric and adult health care systems, and gaps in health insurance at the age of transition.1
The 2016 National Survey of Children's Health indicated more than 14 million children have special health care needs. Over one-quarter of households with children have at least one child with special health care needs. The literature has identified that without established transitional care programs 25% of adolescents who transfer to adult health care services do not regularly attend follow-up visits.2
Scope of problem: Adolescents with special health care needs encounter barriers and challenges during transition to adult health care that have the potential to impact health outcomes and satisfaction with the experience. The use of transitional care services can provide resources and support throughout the transition process to the adolescent and their parent/caregiver. This research was conducted to evaluate adolescent and/or parent/caregiver satisfaction with the transitional care services provided by an urban, academic, pediatric health care facility. Nineteen of 39 (49%) eligible participants completed the survey. Findings indicated that adolescents and their parent/caregiver were satisfied with the resources and support offered by a transitional care service and experienced positive health outcomes, reinforcing the need for collaboration between pediatrics and adult care providers.
Study Population: English-speaking adolescents with special health care needs, who were ≥ 18 years of age, utilized the Multidisciplinary Intervention Navigation Team (MINT) at the Children’s Hospital of Philadelphia, received care from two or more subspecialists and/or had an intellectual/developmental disability.
English-speaking parent/caregiver’s of an adolescent with special health care needs who had an intellectual and/or developmental disability and who utilized MINT at the Children’s Hospital of Philadelphia.
Design: A descriptive study to evaluate adolescent and/or parent/caregiver satisfaction with the transitional care services provided by an urban, academic, pediatric health care facility. This researcher and members of the MINT service developed a survey using The Six Core elements of transition as the guiding framework and distributed the survey using REDCap ® to the eligible participants. Data were collected from March 2018 to April 2018; nineteen of 39 (49%) eligible participants completed the survey. The CHOP Institutional Review Board deemed this research exempt from review.
Limitations: The survey was not anonymous, although participants were not asked to provide a name; personal emails were used to deliver the survey to the participant, therefore, making the participant identifiable. Those participants that answered the survey online were afforded visual surveillance of questions and the ability to respond in a quiet environment. Those participants that responded via phone had the potential for auditory distractions occurring during the interview process. The phone interviews were not recorded, therefore relying on the researcher to accurately transcribe the participant’s replies in real time and subjecting the data to unconscious bias. A final limitation was the research could not be generalized, as it was one program in one organization being evaluated. A strength of the study was half of the eligible participants responded to the survey and the survey used open-ended questions that probed both the positive aspects and aspects that needed improvement in the MINT service.
Conclusion(s)/Implications for Nursing Practice: Survey responses indicate the need to foster interprofessional collaboration between pediatric and adult care providers to ensure a safe and successful transition to adult care. The transition conversation should be occurring at an earlier age between the primary care provider, specialists and the patient. Patients and parent/caregivers surveyed verbalized the need for health care providers need to provide additional education and psychological support at the beginning of the transition experience. Future considerations should include, increasing the training opportunities for family and adult nurse practitioner students, medical students and residents with medically complex adolescents and assessing what role lower reimbursement plays in the adult provider’s willingness to engage in transition visits.
References:
Data resource Center for Child & Adolescent Health. National Survey of Children with Special Health Care Needs. http://childhealthdata.org/learn/NSCH. Published 2016.
- Lotstein, D. S., McPherson, M., Strickland, B., & Newacheck, P. W. (2005). Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs. Pediatrics, 115(6), 1562-1568.
- Sattoe, J. N., Peeters, M. A., Hilberink, S. R., Ista, E., & van Staa, A. (2016). Evaluating outpatient transition clinics:
A mixed-methods study protocol. BMJ Open,6(8), e011926-2016-011926. doi:10.1136/bmjopen-2016-011926 [doi]