NCT06156124

Brief Summary

The goal of this observational study is to investigate the specificity of the growing up process in young people with disabled siblings. The functioning of adolescents with disabled siblings as a person growing up in three environments will be examined: family, peers and school. The main questions it aims to answer are:

  • Does having a disabled sibling influence the functioning of a healthy child in the family system?
  • Do siblings of disabled children show a higher level of maturity than their peers with properly developing siblings?
  • Does having a disabled sibling modify a child's functioning among peers?
  • Does having a disabled sibling modify healthy adolescent's educational experience?
  • Is there a greater risk of psychological disorders among siblings of disabled children than among siblings of normally developing children? The 160 participants' dyads will take part in the study: healthy adolescent having disabled sibling and one of his/her parents. The parents' participation is necessary to assess the presence of possible internalizing and externalizing disorders among adolescents taking part in the study. The healthy adolescent will be filling out questionnaires regarding the remaining studied variables: functioning in the family - siblings relations, parental attitudes; at school - school achievement, extracurricular activities; relations with peers - time spending with peers, number of friends, as well as the growing up process trajectory - parentification and the way of going through an adolescent crisis. Researchers will compare four groups (40 dyads in each group): three groups of adolescents having disabled sibling 1) intellectual disability, 2) motor disability, 3) chronic somatic disease, and 4) control group - healthy adolescent having sibling without any disability, to see if they differ from each other referring to the studied variables.

Trial Health

43
At Risk

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Trial has exceeded expected completion date
Enrollment
320

participants targeted

Target at P75+ for all trials

Timeline
Completed

Started Jun 2023

Geographic Reach
1 country

1 active site

Status
unknown

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

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Study Timeline

Key milestones and dates

Study Start

First participant enrolled

June 13, 2023

Completed
3 months until next milestone

First Submitted

Initial submission to the registry

August 30, 2023

Completed
3 months until next milestone

First Posted

Study publicly available on registry

December 5, 2023

Completed
1.1 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

January 12, 2025

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

January 12, 2025

Completed
Last Updated

December 5, 2023

Status Verified

December 1, 2023

Enrollment Period

1.6 years

First QC Date

August 30, 2023

Last Update Submit

December 3, 2023

Conditions

Keywords

siblingsdisabilityteenagersadolescencefamilyadolescent crisisdevelopmentinternalizing and externalizing disordersresiliency

Outcome Measures

Primary Outcomes (8)

  • Siblings relations

    Questionnaire of Relationships with Siblings. Questionnaire consist of 20 items, composed of three subscales: 1) cohesion, 2) communication, and 3) rivalry. The study participants evaluate the frequency of experiencing the given feelings and behaviors about sibling on 5-point Likert-type scale (from 1 - never, to 5 - very often).

    June 13, 2023 until January 12, 2025

  • Parental Attitudes

    Parental Attitude Scale - 2. The questionnaire enables the evaluation of five parental attitudes: Acceptance-rejection, Demanding, Autonomy, Inconsistency, and Overprotective. The questionnaire consists of 45 items (separately for mother and father). The participants provide answers on a 5-point scale, assessing which answer best corresponds to the behavior of the mother/father towards the adolescent (from 1 - not true at all to 5 - completely true).

    June 13, 2023 until January 12, 2025

  • Relations with peers

    Relationships with peers will be assessed on the basis of the answers given to the questions in the survey created for the purposes of the study. The questions will consider issues such as: amount of time spend with peers, number of close friends, participation in joint activities with peers. Furthermore to investigate the adolescents' quality of life in terms of relationship with peers and support from them the Polish adaptation of KidScreen-27 will be used. This questionnaire, consists of 27 items. Adolescent answers the given questions on 5-point scale (from 1 - never to 5 - always. The KidScreen-27 measures five dimensions of quality of life 1) physical well-being, 2) psychological well-being, 3) parent relationships and autonomy, 4) social support and peers, and 5) school environment. The social support and peers dimension will be used in the research.

    June 13, 2023 until January 12, 2025

  • Functioning at school

    Functioning at school will be assessed on the basis of the answers given to the questions in the survey created for the purposes of the study. The questions will consider issues such as: school achievement (arithmetical mean grade is reported for students on the yearly certificate of class completion, in our study will be self-reported by adolescent), extracurricular activities.

    June 13, 2023 until January 12, 2025

  • Quality of life in school environment dimension

    The Polish adaptation of KidScreen-27 will be used to investigate adolescent's quality of life in school environment dimension, which refers to adolescents' feelings towards school, their relationships with teachers and ability to concentrate and learn.

    June 13, 2023 until January 12, 2025

  • Parentification

    Parentification Questionnaire for Youth - PQY. The self-report questionnaire captures the multidimensional nature of parentification. PQY consists of 26 items, participants rated their responses 5-point Likert-type scale (1 - never true, to 5 - always true). The scale is composed of four subscales: 1) emotional parentification toward parents, 2) instrumental parentification toward parents, 3) sense of injustice, and 4) satisfaction with the role; and additional two subscales for adolescents who have siblings: 1) instrumental parentification toward siblings, and 2) emotional parentification toward siblings. The above PQY questionnaire does not provide a total score, and score for each subscale is calculated as the mean of the ratings for the subscale items.

    June 13, 2023 until January 12, 2025

  • Adolescent crisis

    Teenage Rebellion Questionnaire to assess one of the manifestations of the adolescent crisis - teenage rebellion. Part I describes 39 situations in which teenagers may rebel. These situations refer to three triggers (limitations, threats or discrepancies) and contain a description of a specific subject of rebellion. Part II of the questionnaire contains descriptions relating to four subject groups: 1) behaviors that are a manifestation of rebellion and the reasons for refraining from manifesting rebellion outside; 2) the judgments underlying the rebellion; 3) emotions related to rebellion; and 4) indicators on the basis of which adolescents distinguish rebellion from other mental states. The results obtained in the second part of the questionnaire make it possible to recreate the behaviors, judgments and emotions involved in adolescent rebellion that are characteristic of an individual.

    June 13, 2023 until January 12, 2025

  • Clinical problems

    Child Behavior Checklist 6-18 (CBCL). CBCL is a widely known parent measure of emotional and behavioral problems in children and adolescents ages 6-18 years. CBCL consist of 113 items and several scales, which are arranged hierarchically. Each level of the hierarchy reflects a range of different emotional and behavioral problems. At the top of this hierarchy are the Internalizing Domain and the Externalizing Domain. The Internalizing Domain: includes three narrower scales of syndromes 1) Anxious/Depressed, 2) Withdrawn/Depressed, and 3) Somatic Complaints, whereas the Externalizing Domain includes 1) Rule Breaking Behavior and 2) Aggressive Behavior syndrome scales.

    June 13, 2023 until January 12, 2025

Secondary Outcomes (1)

  • Sociodemographic data

    June 13, 2023 until January 12, 2025

Study Arms (4)

Adolescents having sibling with intellectual disability

Dyads of healthy Polish adolescents 16-18 y.o., who have sibling with intellectual disability and one of their parent. The parent's participation is necessary to assess the presence of possible disorders in a healthy child.

Diagnostic Test: Psychological tests and psychosocial questionnaires

Adolescents having sibling with motor disability

Dyads of healthy Polish adolescents 16-18 y.o., who have sibling with motor disability and one of their parent. The parent's participation is necessary to assess the presence of possible disorders in a healthy child.

Diagnostic Test: Psychological tests and psychosocial questionnaires

Adolescents having sibling with diabetes

Dyads of healthy Polish adolescents 16-18 y.o., who have sibling with chronic somatic disease - diabetes, and one of their parent. The parent's participation is necessary to assess the presence of possible disorders in a healthy child.

Diagnostic Test: Psychological tests and psychosocial questionnaires

Adolescents having healthy sibling

Dyads of healthy Polish adolescents 16-18 y.o., who ave healthy sibling, and one of their parent. The parent's participation is necessary to assess the presence of possible disorders in a healthy child.

Diagnostic Test: Psychological tests and psychosocial questionnaires

Interventions

Assessment of psychological functioning of adolescents (including occurrence of internalizing and externalizing problems, coping with adolescent crisis), family functioning (siblings relations, parental attitudes, parentification), functioning at school (school achievement, extracurricular activities), relations with peers (time spending with peers, number of friends, quality of relations). Further, the sociodemographic variables will be also measured.

Adolescents having healthy siblingAdolescents having sibling with diabetesAdolescents having sibling with intellectual disabilityAdolescents having sibling with motor disability

Eligibility Criteria

Age16 Years - 18 Years
Sexall
Healthy VolunteersYes
Age GroupsChild (0-17), Adult (18-64)
Sampling MethodNon-Probability Sample
Study Population

Polish adolescents having sibling.

You may qualify if:

  • age between 16 and 18 years;
  • having disabled sibling, depending on the group: with intellectual disability or motor disability or with chronic somatic disease (diabetes);
  • participation in the study of one of the parents.
  • age between 16 and 18 years;
  • having healthy siblings without any disability;
  • participation in the study of one of the parents.

You may not qualify if:

  • siblings with multiple disabilities, e.g. intellectual and motor disabilities.
  • being an adolescent with disability/disorder/disease;
  • age below 16 and above 18 years.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

University of Gdansk

Gdansk, Pomeranian Voivodeship, 80-309, Poland

RECRUITING

MeSH Terms

Conditions

Intellectual DisabilityDevelopmental DisabilitiesDiabetes MellitusAdolescent BehaviorPsychological Well-Being

Condition Hierarchy (Ancestors)

Neurobehavioral ManifestationsNeurologic ManifestationsNervous System DiseasesSigns and SymptomsPathological Conditions, Signs and SymptomsNeurodevelopmental DisordersMental DisordersGlucose Metabolism DisordersMetabolic DiseasesNutritional and Metabolic DiseasesEndocrine System DiseasesBehaviorPersonal Satisfaction

Study Officials

  • Ariadna B Łada-Maśko, M.A.

    Institute of Psychology, University of Gdansk

    PRINCIPAL INVESTIGATOR

Central Study Contacts

Ariadna B Łada-Maśko, M.A.

CONTACT

Małgorzata Lipowska, Prof.

CONTACT

Study Design

Study Type
observational
Observational Model
CASE CONTROL
Time Perspective
RETROSPECTIVE
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Principal Investigator

Study Record Dates

First Submitted

August 30, 2023

First Posted

December 5, 2023

Study Start

June 13, 2023

Primary Completion

January 12, 2025

Study Completion

January 12, 2025

Last Updated

December 5, 2023

Record last verified: 2023-12

Locations