TITLE: Protocol_Psychosocial Support and Care for Children with Special Health Care Needs and Their Families: A Scoping Review for Enhancing the Care System
AUTHORS: Tomo Nonoyama

[DESCRIPTION]
Introduction: The increasing number of children with special health care needs (CSHCN) due to advancements
in medical technology indicates the need to strengthen care systems. This
review summarizes findings on care and support for CSHCN and their families.
Method: In this scoping review, an extensive search
strategy included articles searched in December 2023 using databases such as PubMed,
Web of Science, CINAHL, ERIC, The Cochrane Library, and Ichushi (Japanese
language).
Results: Following a comprehensive search and screening
process, 58 articles were selected and categorized into five themes based on
type of care and support: care systems centered on hospitals and other
specialized institutions, care coordination, human resources, and programs
aimed at achieving complex care.
Discussion: This
study underscores the importance of establishing effective care systems, with a
function responsible for continuous and smooth care coordination from multiple
perspectives, for the well-being of CSHCN and their families.

[STEPS]
SECTION: Review Protocol
1. Review Protocol
 
((cshcn[tiab]) OR ("children with
special needs"[tiab] OR "children with special health care
needs"[tiab] OR "children with special healthcare needs"[tiab])
OR ("children with special needs"[tiab] OR "children with
special health care needs"[tiab]) AND (care[tiab] OR cares[tiab] OR
"support*"[tiab] OR "service*"[tiab])
 
Publication date ↓
The definition of CSHCN was clarified by
the journal in 1998 or later.
Target language: English (including
Japanese for medical journals)
 
Aim: To organize and integrate previous
findings on care and support for CSHCN and their families.
Screening will be conducted by two
independent researchers, and any disagreements will be discussed and agreed
upon.
Agreement will be reached on any
disagreements. The number of applicable cases using the above search formula is
expected to be approximately 1,500. To increase consistency among researchers,
10% of the cases will be screened at the beginning of the screening.
To improve consistency among researchers, a
calibration exercise of screening will be conducted by extracting about 10% of
the references at the beginning of the screening.
(a preliminary screening exercise in which
a pilot screening is conducted to check the criteria and the degree of
agreement and to discuss the results if necessary).
 
Title screening 
Title screening will be used to 
The screening of literature will be
conducted to determine if it is relevant to children with special health care
needs (similar concepts such as medically complex children should be included).
(Similar concepts such as "medically
complex children" should be included.)
Is the content related to the challenges,
difficulties, care and support for the child and family?
Is the content related to support for
living, growth, development, and parenting, rather than treatment of disease?
The following are excluded.
×x Contents related to oral care and dental
treatment, CSHCN screener, and medical decision making,
disaster preparedness, ADL measurement for
children, Medicaid and Medicaid policy, stress biomarker development,
adult transition support,
 
Abstract/Full-text screening 
Does the abstract include a description of
challenges, difficulties, or care for children and families?
(Some abstracts include care and support in
the title but are limited to a survey of the current situation.)
(Some of the abstracts included care and
support in the title but were limited to a survey of the current situation.
×(Some of the reports included care and
support in the title, but were limited to a survey of the current situation,
Adverse Childhood Experiences (ACE) survey
only, study skills, barriers to respite but not respite care, focal points.
not respite care, existing scoping reviews
with a different focus, adult transitional support evaluations only,
Hospitalization Best Practices Alerts,
insurance programs in US states