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.
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).
Study Type
INTERVENTIONAL
Allocation
NON_RANDOMIZED
Purpose
SUPPORTIVE_CARE
Masking
NONE
Enrollment
204
Non-randomized controlled trial with four points of measurement ( in 18 months)
Kindernetzwerk e.V.
Mainaschaff, Germany
Nestwärme gGmbH
Trier, Germany
Family quality of life
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.
Time frame: 18 months
Parents' mental and physical health
General Health Questionnaire-28 - GHQ-28
Time frame: 18 months
Well-being
WHO-Five Well-being Index - WHO-5
Time frame: 18 months
Stress experience
Perceived Stress Scale - PSS-4
Time frame: 18 months
Family burden due to illness of the child
Impact-on-Family Scale - IOFS-20
Time frame: 18 months
Family cohesion
Resilience Scale for Adults - RSA
Time frame: 18 months
Resilience
Brief Resilience Scale - BRS
Time frame: 18 months
Individual stressor exposure
Mainz Inventory of Microstressors - MIMIS
Time frame: 18 months
Life events
Life History Calendar - LHC
Time frame: 18 months
Resilience factors and associated measures
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.
Time frame: 18 months
Optimism / positive thinking
Scale Optimism-Pessimism-2 - SOP-2
Time frame: 18 months
Locus of control
Internal and External Locus of Control Scale-4 - IE-4
Time frame: 18 months
Self-efficacy
General Self-efficacy Short Scale - ASKU-3
Time frame: 18 months
Social support
Oslo Social Support Scale - OSSS-3
Time frame: 18 months
Access to care
Operationalization see below (outcome measures 16-18).
Time frame: 18 months
Satisfaction with health care
Self-developed questionnaire with 13 items
Time frame: 18 months
Use of support services
Self-developed questionnaire with 21 items
Time frame: 18 months
Satisfaction with health coordination
Case Management questionnaire with 11 items
Time frame: 12 months
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