Gesundheitswesen (Bundesverband der Arzte des Offentlichen Gesundheitsdienstes (Germany)) · 2026
[Psychosocial and Practical Burdens Faced by Families with (Seriously) Ill Children and Adolescents in Lower Saxony: An Analysis of their Current Life Situation].
Аннотация на английскомСтатьяНазвание и аннотация: Перевод в очереди
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Toenne Rebecca, Meißner Imke, Hemmerling Melissa, Schütte Sabrina, Stahmeyer Jona T, Koch Anika, Reschke Felix
Аннотация
INTRODUCTION: Families with chronically ill or care-dependent children often face considerable organizational, psychosocial, and health-related burdens. At the same time, complex care structures and unclear responsibilities can hinder access to support services. This study aimed to describe the burden experienced by families with care-dependent children in Lower Saxony and to identify factors associated with key dimensions of parents' living situation.
METHODS: In September 2024, postal questionnaires were sent to 600 families with care-dependent children (0-18 years) insured by AOK Lower Saxony. The questionnaire was based on a preceding qualitative interview study and included sociodemographic characteristics, disease-related information, and 26 burden indicators. Four dimensions of the parents' living situation were assessed: coping with everyday life, adequacy of care provision, availability of support services, and parents' self-reported health status. Data were analyzed descriptively, and associations were examined using Spearman rank correlations.
RESULTS: 111 families participated in the survey (response rate: 19%). Care for the children is primarily provided by the parents themselves; only 12.6% use a care service for support. Frequently reported burdens include concerns about the child (95%), the significant time commitment required for care (91%), and a lack of time as a couple (83%). At the same time, 73% of respondents reported unclear responsibilities among social service providers, and 54% reported insufficient support services. Social factors-particularly the impact on siblings, social isolation, and a lack of support-are associated with all dimensions of living conditions examined.
CONCLUSION: The findings indicate a high multidimensional burden among families with care-dependent children. In addition to structural gaps in care provision, psychosocial factors and parental health play a central role. Improved care coordination and low-threshold information and support services may help reduce the burden on affected families.
METHODS: In September 2024, postal questionnaires were sent to 600 families with care-dependent children (0-18 years) insured by AOK Lower Saxony. The questionnaire was based on a preceding qualitative interview study and included sociodemographic characteristics, disease-related information, and 26 burden indicators. Four dimensions of the parents' living situation were assessed: coping with everyday life, adequacy of care provision, availability of support services, and parents' self-reported health status. Data were analyzed descriptively, and associations were examined using Spearman rank correlations.
RESULTS: 111 families participated in the survey (response rate: 19%). Care for the children is primarily provided by the parents themselves; only 12.6% use a care service for support. Frequently reported burdens include concerns about the child (95%), the significant time commitment required for care (91%), and a lack of time as a couple (83%). At the same time, 73% of respondents reported unclear responsibilities among social service providers, and 54% reported insufficient support services. Social factors-particularly the impact on siblings, social isolation, and a lack of support-are associated with all dimensions of living conditions examined.
CONCLUSION: The findings indicate a high multidimensional burden among families with care-dependent children. In addition to structural gaps in care provision, psychosocial factors and parental health play a central role. Improved care coordination and low-threshold information and support services may help reduce the burden on affected families.