Quality of Life and Well-Being for Children and Youth With Special Health Care Needs and their Families: A Vision for the Future.
Pediatrics
; 149(Suppl 7)2022 06 01.
Article
em En
| MEDLINE
| ID: mdl-35642872
ABSTRACT
OBJECTIVES:
To fulfill the promise of a life of dignity, autonomy, and independence for children and youth with special health care needs (CYSHCN) and their families, greater value must be assigned to meaningful outcomes, such as quality of life and well-being.METHODS:
Despite decades of research, programs, and measurements addressing quality of life and well-being for CYSHCN and their families, there still is no consensus on how to measure, implement, or achieve them.RESULTS:
As the US health care system strives to reach the health care goals of safe, efficient, effective, equitable, timely, and patient-centered care, youth and families must be equal partners at all levels of the health care system-from clinical decision making to designing and implementing programs and policies.CONCLUSIONS:
The health care system must systematically measure the priorities of CYSHCN and their families. It also must incorporate data on quality of life and well-being when developing services, supports, and systems that help CYSHCN and their families to flourish rather than hindering them.
Texto completo:
1
Coleções:
01-internacional
Contexto em Saúde:
11_ODS3_cobertura_universal
Base de dados:
MEDLINE
Assunto principal:
Qualidade de Vida
/
Crianças com Deficiência
Tipo de estudo:
Prognostic_studies
Aspecto:
Patient_preference
Limite:
Adolescent
/
Child
/
Humans
Idioma:
En
Revista:
Pediatrics
Ano de publicação:
2022
Tipo de documento:
Article