Family Health Partners in Regional Network Structures
- Conditions
- Disabled or Chronically Ill Children in Need of Care
- Interventions
- Other: Families with FGP support
- Registration Number
- NCT05418205
- Lead Sponsor
- Universitätsklinikum Hamburg-Eppendorf
- 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).
Recruitment & Eligibility
- Status
- ACTIVE_NOT_RECRUITING
- Sex
- All
- Target Recruitment
- 204
- 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
- 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)
Study & Design
- Study Type
- INTERVENTIONAL
- Study Design
- PARALLEL
- Arm && Interventions
Group Intervention Description Intervention Group (IG) Families with FGP support Families with FGP support (families with disabled and/or chronically children under 18 in the greater area of Mainz, Saarbrucken and Munich (Germany)
- Primary Outcome Measures
Name Time Method Resilience 18 months Brief Resilience Scale - BRS
Family quality of life 18 months Name 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.
Well-being 18 months WHO-Five Well-being Index - WHO-5
Parents' mental and physical health 18 months General Health Questionnaire-28 - GHQ-28
Stress experience 18 months Perceived Stress Scale - PSS-4
Family burden due to illness of the child 18 months Impact-on-Family Scale - IOFS-20
Life events 18 months Life History Calendar - LHC
Family cohesion 18 months Resilience Scale for Adults - RSA
Individual stressor exposure 18 months Mainz Inventory of Microstressors - MIMIS
- Secondary Outcome Measures
Name Time Method Resilience factors and associated measures 18 months Name 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 thinking 18 months Scale Optimism-Pessimism-2 - SOP-2
Social support 18 months Oslo Social Support Scale - OSSS-3
Access to care 18 months Operationalization see below (outcome measures 16-18).
Satisfaction with health care 18 months Self-developed questionnaire with 13 items
Self-efficacy 18 months General Self-efficacy Short Scale - ASKU-3
Use of support services 18 months Self-developed questionnaire with 21 items
Locus of control 18 months Internal and External Locus of Control Scale-4 - IE-4
Satisfaction with health coordination 12 months Case Management questionnaire with 11 items
Trial Locations
- Locations (2)
Nestwärme gGmbH
🇩🇪Trier, Germany
Kindernetzwerk e.V.
🇩🇪Mainaschaff, Germany