UMIN-ICDS Clinical Trial
| Unique ID issued by UMIN | UMIN000060860 |
|---|---|
| Receipt number | R000069640 |
| Scientific Title | Siblings' Perspectives and Involvement in Future Care and Care Planning for Persons with Disabilities: A Scoping Review |
| Date of disclosure of the study information | 2026/03/06 |
| Last modified on | 2026/03/06 22:34:22 |
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Basic information
Public title
Siblings' Perspectives and Involvement in Future Care and Care Planning for Persons with Disabilities: A Scoping Review
Acronym
Siblings' Perspectives and Involvement in Future Care and Care Planning for Persons with Disabilities: A Scoping Review
Scientific Title
Siblings' Perspectives and Involvement in Future Care and Care Planning for Persons with Disabilities: A Scoping Review
Scientific Title:Acronym
Siblings' Perspectives and Involvement in Future Care and Care Planning for Persons with Disabilities: A Scoping Review
Region
| Japan |
Condition
Condition
None
Classification by specialty
| Not applicable | Adult |
Classification by malignancy
Others
Genomic information
NO
Objectives
Narrative objectives1
This study examines siblings' perceptions and involvement regarding future care and care plans for individuals with disabilities, building upon existing research. It explores support not only for individuals with disabilities and their parents, but also for families including siblings.
Basic objectives2
Others
Basic objectives -Others
None
Trial characteristics_1
Trial characteristics_2
Developmental phase
Assessment
Primary outcomes
Siblings' percepcions and involvement regarding future care and care plans for persons with disabilities
Key secondary outcomes
Base
Study type
Others,meta-analysis etc
Study design
Basic design
Randomization
Randomization unit
Blinding
Control
Stratification
Dynamic allocation
Institution consideration
Blocking
Concealment
Intervention
No. of arms
Purpose of intervention
Type of intervention
Interventions/Control_1
Interventions/Control_2
Interventions/Control_3
Interventions/Control_4
Interventions/Control_5
Interventions/Control_6
Interventions/Control_7
Interventions/Control_8
Interventions/Control_9
Interventions/Control_10
Eligibility
Age-lower limit
| Not applicable |
Age-upper limit
| Not applicable |
Gender
Male and Female
Key inclusion criteria
Focuses on siblings of children and adults with disabilities,parents and grandparents are excluded.
If parents, grandparents, or professionals are included in the sample but results can be distinguished,they may be included.
This literature review does not restrict the age of siblings.
Regarding the type of disability, both congenital and acquired disabilities are included.
Includes both home based and institutional care settings.
Articles in Japanese or English.
Publication year,2000 or later.
Key exclusion criteria
Exclude cases where the person with a disability has a mental illness or learning disability.
Cases where the child with a disability is clearly an infant or toddler or otherwise not yet of school age.
Academic conference reports,review articles, reviews, book chapters, doctoral dissertations, and other degree theses.
Intervention studies.
Research on advance care planning,ACP.
Target sample size
Research contact person
Name of lead principal investigator
| 1st name | Akemi |
| Middle name | |
| Last name | Matsuzawa |
Organization
Faculty of Health Sciences, Hokkaido University
Division name
Comprehensive Developmental Nursing
Zip code
060-0812
Address
Kita 12, Nishi 5, Kita-ku, Sapporo, Hokkaido, Japan
TEL
0117063378
matsuzawa@hs.hokudai.ac.jp
Public contact
Name of contact person
| 1st name | Akemi |
| Middle name | |
| Last name | Matsuzawa |
Organization
Faculty of Health Sciences, Hokkaido University
Division name
Comprehensive Developmental Nursing
Zip code
060-0812
Address
Kita 12, Nishi 5, Kita-ku, Sapporo, Hokkaido, Japan
TEL
0117063378
Homepage URL
matsuzawa@hs.hokudai.ac.jp
Sponsor or person
Institute
Hokkaido University
Institute
Department
Personal name
Funding Source
Organization
Hokkaido University
Organization
Division
Category of Funding Organization
Other
Nationality of Funding Organization
Other related organizations
Co-sponsor
Name of secondary funder(s)
IRB Contact (For public release)
Organization
Faculty of Health Sciences, Hokkaido University
Address
Kita 12, Nishi 5, Kita-ku, Sapporo, Hokkaido, Japan
Tel
0117063378
matsuzawa@hs.hokudai.ac.jp
Secondary IDs
Secondary IDs
NO
Study ID_1
Org. issuing International ID_1
Study ID_2
Org. issuing International ID_2
IND to MHLW
Institutions
Institutions
Other administrative information
Date of disclosure of the study information
| 2026 | Year | 03 | Month | 06 | Day |
Related information
URL releasing protocol
Publication of results
Unpublished
Result
URL related to results and publications
Number of participants that the trial has enrolled
26
Results
After analyzing 26 papers revealed that sibling perception and involvement in future care and care planning for individuals with disabilities was influenced by five contents: 1) Anxiety about future care, care responsibilities, and impact on their own lives; 2) Recognition of the need for future care planning; 3) Lack of future care planning; 4) Need for communication with parents regarding future care planning; 5) factors influencing future care planning.
Results date posted
| 2026 | Year | 03 | Month | 06 | Day |
Results Delayed
Results Delay Reason
Date of the first journal publication of results
Baseline Characteristics
Participant flow
Adverse events
Outcome measures
Plan to share IPD
IPD sharing Plan description
Progress
Recruitment status
Main results already published
Date of protocol fixation
| 2025 | Year | 08 | Month | 10 | Day |
Date of IRB
| 2026 | Year | 03 | Month | 06 | Day |
Anticipated trial start date
| 2025 | Year | 08 | Month | 10 | Day |
Last follow-up date
| 2026 | Year | 03 | Month | 03 | Day |
Date of closure to data entry
Date trial data considered complete
Date analysis concluded
Other
Other related information
The study design is a scoping review (Arksy & O'Malley, 2005), the PCC is defined as follows:
P (Patient) Siblings of individuals with disabilities
(Excluding mental illness and learning disabilities; congenital/acquired conditions not specified; living arrangements not specified)
C (Concept) Perceptions and involvement regarding future care/care plans for their own child
C (Context) Country, living arrangements (home-based or facility-based), etc., not specified.
The following bibliographic databases are used to search for research papers; PubMed, CINAHL, Web of Science, Nippon Igaku Zasshi Web Edition, CiNii Research.
The selection method for research papers involves the following process based on search terms, conducted independently by two or more individuals:
1. Initial screening: Review titles and abstracts.
2. Secondary screening: Review remaining literature and abstracts. For papers that cannot be excluded at this stage, review the full text.
For papers where judgment is uncertain, conduct a review with all researchers. Papers deemed ineligible after full-text review are excluded.
Target papers are extracted, and the data extracted via charting is as follows.
Literature is organized using a matrix format for the following data:
Author,Publication Year, Study Design, Study Purpose,Study Population/Sample Size, Methods, Outcomes/Measurement Methods,Results (Key Findings)
Management information
Registered date
| 2026 | Year | 03 | Month | 06 | Day |
Last modified on
| 2026 | Year | 03 | Month | 06 | Day |
Link to view the page
Value
https://center6.umin.ac.jp/cgi-open-bin/icdr_e/ctr_view.cgi?recptno=R000069640
