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Development and Implementation of Evidence-Based Family-Oriented Support for Young Carers and Their Families in Germany

Primary Purpose

Chronic Illness

Status
Unknown status
Phase
Not Applicable
Locations
Germany
Study Type
Interventional
Intervention
support service
Sponsored by
University of Witten/Herdecke
About
Eligibility
Locations
Arms
Outcomes
Full info

About this trial

This is an interventional supportive care trial for Chronic Illness focused on measuring young carers, family support, children (up to the age of 18) of chronically ill parents

Eligibility Criteria

8 Years - 18 Years (Child, Adult)All SexesDoes not accept healthy volunteers

Inclusion Criteria:

  • children of mentally ill parents (chronic illness)
  • children of somatically ill parents (chronic illness)

Exclusion Criteria:

  • children of drug addicted parents

Sites / Locations

  • Institute of Nursing Science

Arms of the Study

Arm 1

Arm 2

Arm Type

Experimental

No Intervention

Arm Label

1

2

Arm Description

intervention group

waiting group

Outcomes

Primary Outcome Measures

health-related Quality of Life in children

Secondary Outcome Measures

Full Information

First Posted
August 12, 2008
Last Updated
December 22, 2008
Sponsor
University of Witten/Herdecke
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1. Study Identification

Unique Protocol Identification Number
NCT00734942
Brief Title
Development and Implementation of Evidence-Based Family-Oriented Support for Young Carers and Their Families in Germany
Official Title
Improved Health-Related Quality of Life for Young Carers and Their Families in Germany on the Basis of Evidence-Based Family-Oriented Support
Study Type
Interventional

2. Study Status

Record Verification Date
August 2008
Overall Recruitment Status
Unknown status
Study Start Date
January 2009 (undefined)
Primary Completion Date
December 2009 (Anticipated)
Study Completion Date
March 2010 (Anticipated)

3. Sponsor/Collaborators

Name of the Sponsor
University of Witten/Herdecke

4. Oversight

Data Monitoring Committee
No

5. Study Description

Brief Summary
The purpose of this study is to develop and implement evidence-based and family-oriented support for young carers and their families in Germany. Hypothesis is that families' own support mechanisms, combined with externally provided support that is determined by the families' specific needs, will help to overcome their burden and enable families to live in the way they wish to despite chronic illness. This will lead to a measurable increase in HRQOL of children concerned.

6. Conditions and Keywords

Primary Disease or Condition Being Studied in the Trial, or the Focus of the Study
Chronic Illness
Keywords
young carers, family support, children (up to the age of 18) of chronically ill parents

7. Study Design

Primary Purpose
Supportive Care
Study Phase
Not Applicable
Interventional Study Model
Parallel Assignment
Masking
Investigator
Allocation
Randomized
Enrollment
150 (Anticipated)

8. Arms, Groups, and Interventions

Arm Title
1
Arm Type
Experimental
Arm Description
intervention group
Arm Title
2
Arm Type
No Intervention
Arm Description
waiting group
Intervention Type
Other
Intervention Name(s)
support service
Intervention Description
professional partners for communication befriending with other families concerned information and education (about illness, symptoms, first aid, caring) free-time activities and time out homework assistance administrative advise support for everyday life
Primary Outcome Measure Information:
Title
health-related Quality of Life in children
Time Frame
study start and after 5 month of intervention

10. Eligibility

Sex
All
Minimum Age & Unit of Time
8 Years
Maximum Age & Unit of Time
18 Years
Accepts Healthy Volunteers
No
Eligibility Criteria
Inclusion Criteria: children of mentally ill parents (chronic illness) children of somatically ill parents (chronic illness) Exclusion Criteria: children of drug addicted parents
Central Contact Person:
First Name & Middle Initial & Last Name or Official Title & Degree
Sabine Metzing-Blau, Dr.
Phone
00492302926
Ext
377
Email
smetzing@uni-wh.de
First Name & Middle Initial & Last Name or Official Title & Degree
Joerg grosse Schlarmann, MScN
Phone
00492302926
Ext
377
Email
schlarmann@uni-wh.de
Overall Study Officials:
First Name & Middle Initial & Last Name & Degree
Sabine Metzing-Blau, Dr.
Organizational Affiliation
Institute of Nursing Science; Witten/Herdecke University
Official's Role
Principal Investigator
First Name & Middle Initial & Last Name & Degree
Wilfried Schnepp, Prof.Dr.
Organizational Affiliation
Institute of Nursing Science; Witten/Herdecke University
Official's Role
Study Director
Facility Information:
Facility Name
Institute of Nursing Science
City
Witten
State/Province
NRW
ZIP/Postal Code
58453
Country
Germany
Facility Contact:
First Name & Middle Initial & Last Name & Degree
Sabine Metzing-Blau, Dr.
Phone
00492302926
Ext
377
Email
smetzing@uni-wh.de
First Name & Middle Initial & Last Name & Degree
Joerg grosse Schlarmann, MScN
Phone
00492302926
Ext
377
Email
schlarmann@uni-wh.de
First Name & Middle Initial & Last Name & Degree
Sabine Metzing-Blau, Dr.
First Name & Middle Initial & Last Name & Degree
Joerg grosse Schlarmann, MScN

12. IPD Sharing Statement

Citations:
PubMed Identifier
18357746
Citation
Metzing S, Schnepp W. [The impact of caring on young carer's lives. An international literature review (1990-2006)]. Pflege. 2007 Dec;20(6):331-6. doi: 10.1024/1012-5302.20.6.331. German.
Results Reference
background
PubMed Identifier
18357745
Citation
Sabine M, Schnepp W. [Children and adolescents as caregivers: who they are and what they do. An international literature review (1990-2006)]. Pflege. 2007 Dec;20(6):323-30. doi: 10.1024/1012-5302.20.6.323. German.
Results Reference
background
PubMed Identifier
19091099
Citation
Schlarmann JG, Metzing-Blau S, Schnepp W. The use of health-related quality of life (HRQOL) in children and adolescents as an outcome criterion to evaluate family oriented support for young carers in Germany: an integrative review of the literature. BMC Public Health. 2008 Dec 17;8:414. doi: 10.1186/1471-2458-8-414.
Results Reference
background
PubMed Identifier
22135716
Citation
Schlarmann JG, Metzing S, Schoppmann S, Schnepp W. Germany's First Young Carers Project's Impact on the Children: Relieving the Entire Family. A Qualitative Evaluation. Open Nurs J. 2011;5:86-94. doi: 10.2174/1874434601105010086. Epub 2011 Oct 26.
Results Reference
derived
Links:
URL
http://www.kinder-kranker-eltern.de
Description
Website of the study

Learn more about this trial

Development and Implementation of Evidence-Based Family-Oriented Support for Young Carers and Their Families in Germany

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