Children and youth in focus – an intervention to increase person-centredness in highly specialised care

An intervention targeting children with congenital heart defects undergoing preoperative assessment for heart surgery or cardiac catheterization and their guardians, compared to standard care, to improve perceived person-centredness in pediatric highly specialised care

Status

Recruiting

Phases

Unknown

Study type

Interventional

Source

ISRCTN

Registry ID

ISRCTN21644418

Enrollment

622

Registered

2026-04-23

Start date

2025-09-15

Completion date

Unknown

Last updated

2026-05-04

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Person-centered care for children and adolescents with congenital heart defects and their guardians before heart surgery/heart catheterization Circulatory System

Interventions

This prospective, single-center interventional study is conducted at a national surgical referral center. Participants are consecutively enrolled during the six months preceding and following the inte

Eligibility

Sex/Gender

All

Age

1 Weeks to 75 Years

Inclusion criteria

Inclusion criteria: 1. Children aged 0-18 years, evaluated for heart surgery or cardiac catheterization, who have been discussed at the multidisciplinary heart conference at the surgical center in Skånes University Hospital - Lund, where a treatment decision is made. 2. Legal guardians of a child as described above. 3. Healthcare professionals at the center or referring hospital involved in the care of the above-mentioned group of children

Exclusion criteria

Exclusion criteria: 1. Children undergoing emergency surgery 2. Children from Stockholm because they follow a different care pathway

Design outcomes

Primary

Measure	Time frame
Improved person-centeredness will be measured by assessing the perceptions of person-centered care among the guardians using the Visual Care Measure (VCM) survey at one timepoint	—

Secondary

Measure	Time frame
1. Improved person-centeredness will be measured by assessing the perceptions of person-centered care among children using the Visual Care Measure (VCM) survey at one timepoint 2. Compare children's satisfaction with the care they received (study-specific questionnaire Children 2, question 8, scale 1–100) to that of their guardians (study-specific questionnaire Guardian 2, question 10, scale 1–100), both before and after the intervention 3. Guardians' satisfaction with the information provided about the child's need for surgery or catheterization, before and after the intervention (study-specific form Guardian 1, question 9, scale 1–100) 4. Guardians' perception of the child's satisfaction with the preparations for heart surgery or catheterization, before and after the intervention (study-specific form Guardian 2, question 9, scale 1–100) 5. Guardians' satisfaction with the child's preparations for heart surgery or catheterization before and after the intervention (study-specific form Guardian 1, question 9, scale 1–100) 6. Guardians' perception of satisfaction with the care before and after the intervention (study-specific form Guardian 2, question 10, scale 1–100) 7. Compare guardians' and children's satisfaction with care before and after the intervention (study-specific form Guardian 2, question 10 + study-specific form Children 2, question 8 + study-specific form Adolescents 2, question 8, scale 1–100) 8. Children's experience of receiving information about whether or not they are going to have surgery or catheterization, before and after the intervention (study-specific form Children 1, question 7, five-point scale plus “don't know”) 9. Children's experience of receiving information about when they will undergo surgery or catheterization, before and after the intervention (study-specific form Children 2, question 3, five-point scale plus “don't know”) 10. Do children who express dissatisfaction with the initial information also report dissatisfaction with the	—

Measure

Time frame

1. Improved person-centeredness will be measured by assessing the perceptions of person-centered care among children using the Visual Care Measure (VCM) survey at one timepoint 2. Compare children's satisfaction with the care they received (study-specific questionnaire Children 2, question 8, scale 1–100) to that of their guardians (study-specific questionnaire Guardian 2, question 10, scale 1–100), both before and after the intervention 3. Guardians' satisfaction with the information provided about the child's need for surgery or catheterization, before and after the intervention (study-specific form Guardian 1, question 9, scale 1–100) 4. Guardians' perception of the child's satisfaction with the preparations for heart surgery or catheterization, before and after the intervention (study-specific form Guardian 2, question 9, scale 1–100) 5. Guardians' satisfaction with the child's preparations for heart surgery or catheterization before and after the intervention (study-specific form Guardian 1, question 9, scale 1–100) 6. Guardians' perception of satisfaction with the care before and after the intervention (study-specific form Guardian 2, question 10, scale 1–100) 7. Compare guardians' and children's satisfaction with care before and after the intervention (study-specific form Guardian 2, question 10 + study-specific form Children 2, question 8 + study-specific form Adolescents 2, question 8, scale 1–100) 8. Children's experience of receiving information about whether or not they are going to have surgery or catheterization, before and after the intervention (study-specific form Children 1, question 7, five-point scale plus “don't know”) 9. Children's experience of receiving information about when they will undergo surgery or catheterization, before and after the intervention (study-specific form Children 2, question 3, five-point scale plus “don't know”) 10. Do children who express dissatisfaction with the initial information also report dissatisfaction with the

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Countries

Sweden

Contacts

Public ContactÅsa Burström

asa.burstrom@ki.se+46 70 263 7247

Outcome results

None listed

Source: ISRCTN (via WHO ICTRP) · Data processed: May 7, 2026