Skip to content

Family Health Partners in Regional Network Structures

Strengthening and Relieving the Burden on Families With Children in Need of Care Through Family Health Partners [Familien-Gesundheits-Partner; FGP] in Regional Network Structures

Status
Active, not recruiting
Phases
NA
Study type
Interventional
Source
ClinicalTrials.gov
Registry ID
NCT05418205
Acronym
NEST
Enrollment
204
Registered
2022-06-14
Start date
2022-01-01
Completion date
2024-09-30
Last updated
2024-05-13

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

Conditions

Disabled or Chronically Ill Children in Need of Care

Keywords

children in need of care, family caregivers, Family Health Partner, non-medical care, regional networking

Brief summary

Families with children with severe health problems are exposed to particular emotional, social, economic and time burdens. These result in further risks, which often lead to poor living and care situations for the families concerned. This is attributed, among other, to legal regulations that do not do justice to the respective individual life situations and the lack of competent information and counselling services. The overarching objective of the NEST project is to evaluate the effectiveness of a professional support facility for families with children in need of care that operates across sectors and service providers. The network support by so-called Family Health Partners \[Familien-Gesundheits-Partner; FGP\] aims to provide assistance and need-based individual care for all members in families with children in need of care. The medium-term goal of FGP support is to develop the family as a self-help system, i.e. as a self-competent, independently acting primary resource for the care and support of their children in need of care.

Detailed description

The project starts facing the problem that families with children with severe health problems are exposed to strong emotional, social, economic and temporal burdens. This results in further health, social and economic risks, which often lead to poor living and care situations for the families concerned. This is attributed, among other things, to legal regulations that do not do justice to the respective individual life situations and the lack of competent advice and contact points. The overarching objective of the NEST project is the evaluation of an innovative support service that addresses the problem. The network support by so-called Family Health Partners \[Familien-Gesundheits-Partner; FGP\] aims to provide needs-based, individual care for all members in families with children in need of care, i.e. the best possible physical, psychological and participation-oriented care for children in need of care, thus relieving the relatives who spend much time for care and assistance of their child/children. The intervention to be evaluated here with regard to its effectiveness and to be analyzed with regard to its impact factors (processes and structures) was summarized in the term of FGP. This personalized function, which is anchored in the network, aims to provide holistic support for families with children in need of care. This means that the needs of the families are determined individually and initially independent of sectoral or service provider specific offers (structured assessment). The needs of families not only relate to medical, nursing or therapeutic care, but also to assistance regarding social law, economic and bureaucratic advice as well as social, psychosocial and emotional needs and social participation. Based on the identified need for support, affected families are individually accompanied by FGP over a certain period of time (in the project context: a maximum of 18 months). The medium-term goal of FGP support is to strengthen or maintain the family as a self-help system, i.e. self-efficient, independently acting primary resource for the care and support of their children (preventive).

Interventions

OTHERFamilies with FGP support

Non-randomized controlled trial with four points of measurement ( in 18 months)

Sponsors

Federal Joint Committee
CollaboratorOTHER_GOV
aQua-Institut GmbH, Germany
CollaboratorUNKNOWN
Leibniz-Institut für Resilienzforschung, Germany
CollaboratorUNKNOWN
nestwärme gGmbH, Germany
CollaboratorUNKNOWN
Kindernetzwerk e.V., Germany
CollaboratorUNKNOWN
ism gGmbH, Germany
CollaboratorUNKNOWN
Universitätsklinikum Hamburg-Eppendorf
Lead SponsorOTHER

Study design

Allocation
NON_RANDOMIZED
Intervention model
PARALLEL
Primary purpose
SUPPORTIVE_CARE
Masking
NONE

Eligibility

Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes

Inclusion criteria

* parents and other guardians with at least one disabled and/or chronically ill child under 18 years in western and southern Germany * all genders and ethnicities will be included in the study

Exclusion criteria

* caregivers for children in need of care according to § 37 of Germany's Social Security Code V level of care = 1 (i.e. minor impairments of independence or abilities)

Design outcomes

Primary

MeasureTime frameDescription
Resilience18 monthsBrief Resilience Scale - BRS
Individual stressor exposure18 monthsMainz Inventory of Microstressors - MIMIS
Life events18 monthsLife History Calendar - LHC
Family quality of life18 monthsName of the measurement and measurement tools can be seen below (outcome measures 2-9). Unit of measure are both measures of central tendency and measures of variability.
Parents' mental and physical health18 monthsGeneral Health Questionnaire-28 - GHQ-28
Well-being18 monthsWHO-Five Well-being Index - WHO-5
Stress experience18 monthsPerceived Stress Scale - PSS-4
Family burden due to illness of the child18 monthsImpact-on-Family Scale - IOFS-20
Family cohesion18 monthsResilience Scale for Adults - RSA

Secondary

MeasureTime frameDescription
Resilience factors and associated measures18 monthsName of the measurement and measurement tools can be seen below (outcome measures 11-14). Unit of measure are both measures of central tendency and measures of variability.
Optimism / positive thinking18 monthsScale Optimism-Pessimism-2 - SOP-2
Locus of control18 monthsInternal and External Locus of Control Scale-4 - IE-4
Self-efficacy18 monthsGeneral Self-efficacy Short Scale - ASKU-3
Social support18 monthsOslo Social Support Scale - OSSS-3
Access to care18 monthsOperationalization see below (outcome measures 16-18).
Satisfaction with health care18 monthsSelf-developed questionnaire with 13 items
Use of support services18 monthsSelf-developed questionnaire with 21 items
Satisfaction with health coordination12 monthsCase Management questionnaire with 11 items

Countries

Germany

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Apr 23, 2026