{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,28]],"date-time":"2026-09-28T09:00:49Z","timestamp":1790586049079,"version":"4.1.0"},"reference-count":11,"publisher":"Georg Thieme Verlag KG","funder":[{"name":"Nieders\u00e4chsisches Ministerium f\u00fcr Soziales, Arbeit, Gesundheit\n                        und Gleichstellung","award":["4 SL 1.3 - 43199\/6 (23-1)"],"award-info":[{"award-number":["4 SL 1.3 - 43199\/6 (23-1)"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Gesundheitswesen"],"abstract":"<jats:title>Zusammenfassung<\/jats:title>\n                  <jats:p>Familien mit chronisch kranken oder pflegebed\u00fcrftigen Kindern sind h\u00e4ufig\n                        erheblichen organisatorischen, psychosozialen und gesundheitlichen\n                        Belastungen ausgesetzt. Gleichzeitig erschweren komplexe\n                        Versorgungsstrukturen und unklare Zust\u00e4ndigkeiten den Zugang zu\n                        Unterst\u00fctzungsangeboten. Ziel der Studie ist es, die Belastungssituation von\n                        Familien mit pflegebed\u00fcrftigen Kindern in Niedersachsen zu beschreiben und\n                        Faktoren zu identifizieren, die die Lebenssituation der Eltern\n                        beeinflussen.<\/jats:p>\n                  <jats:p>Im September 2024 wurden \u00fcber die AOK Niedersachsen postalisch Frageb\u00f6gen an\n                        600 Familien mit pflegebed\u00fcrftigen Kindern (0\u201318 Jahre) versendet. Der\n                        Fragebogen basierte auf einer vorangegangenen qualitativen Interviewstudie\n                        und erfasste soziodemografische Angaben, krankheitsspezifische Merkmale\n                        sowie 26 Belastungsindikatoren. Zur Bewertung der Lebenssituation wurden\n                        vier Dimensionen erhoben: Alltagsbew\u00e4ltigung, Deckung des\n                        Versorgungsbedarfs, Verf\u00fcgbarkeit von Unterst\u00fctzungsangeboten und der eigene\n                        Gesundheitszustand. Die Auswertung erfolgte deskriptiv. Zusammenh\u00e4nge wurden\n                        mittels Spearman-Rangkorrelation analysiert.<\/jats:p>\n                  <jats:p>111 Familien nahmen an der Befragung teil (R\u00fccklaufquote 19%). Die Versorgung\n                        der Kinder wird \u00fcberwiegend durch die Eltern selbst sichergestellt; nur\n                        12,6% nutzen unterst\u00fctzend einen Pflegedienst. H\u00e4ufig berichtete Belastungen\n                        sind Sorgen um das Kind (95%), hoher zeitlicher Versorgungsaufwand (91%)\n                        sowie fehlende Zeit als Paar (83%). Gleichzeitig berichten 73% der Befragten\n                        von unklaren Zust\u00e4ndigkeiten der Sozialleistungstr\u00e4ger und 54% von\n                        unzureichenden Unterst\u00fctzungsangeboten. Soziale Faktoren, insbesondere\n                        Auswirkungen auf Geschwister, soziale Isolation und fehlende Unterst\u00fctzung,\n                        stehen mit allen untersuchten Dimensionen der Lebenssituation in\n                        Zusammenhang.<\/jats:p>\n                  <jats:p>Die Ergebnisse weisen auf eine hohe multidimensionale Belastung von Familien\n                        mit pflegebed\u00fcrftigen Kindern hin. Neben strukturellen Herausforderungen\n                        spielen psychosoziale Faktoren und die Gesundheit der Eltern eine zentrale\n                        Rolle. Ma\u00dfnahmen zur Versorgungskoordination sowie niedrigschwellige\n                        Informations- und Unterst\u00fctzungsangebote k\u00f6nnten zur Entlastung betroffener\n                        Familien beitragen.<\/jats:p>","DOI":"10.1055\/a-2939-7368","type":"journal-article","created":{"date-parts":[[2026,9,28]],"date-time":"2026-09-28T08:41:50Z","timestamp":1790584910000},"source":"Crossref","is-referenced-by-count":0,"title":["Belastungsfaktoren von Familien mit (schwer-)kranken Kindern und\n                    Jugendlichen in Niedersachsen: Eine Analyse der aktuellen\n                    Lebenssituation"],"prefix":"10.1055","author":[{"ORCID":"https:\/\/orcid.org\/0009-0009-5249-9986","authenticated-orcid":false,"given":"Rebecca","family":"Toenne","sequence":"first","affiliation":[{"name":"Netzwerk f\u00fcr die Versorgung schwerkranker Kinder und Jugendlicher\n                    e.V., Niedersachsen, Germany","place":["Hannover"],"department":["Versorgungsforschung"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Imke","family":"Mei\u00dfner","sequence":"first","affiliation":[{"name":"AOK Niedersachsen, Germany","place":["Hannover"],"department":["Stabsbereich Versorgungsforschung"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melissa","family":"Hemmerling","sequence":"additional","affiliation":[{"name":"AOK Niedersachsen, Germany","place":["Hannover"],"department":["Stabsbereich Versorgungsforschung"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sabrina","family":"Sch\u00fctte","sequence":"additional","affiliation":[{"name":"AOK Niedersachsen, Germany","place":["Hannover"],"department":["Stabsbereich Versorgungsforschung"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jona T.","family":"Stahmeyer","sequence":"additional","affiliation":[{"name":"AOK Niedersachsen, Germany","place":["Hannover"],"department":["Stabsbereich Versorgungsforschung"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anika","family":"Koch","sequence":"additional","affiliation":[{"name":"Netzwerk f\u00fcr die Versorgung schwerkranker Kinder und Jugendlicher\n                    e.V., Niedersachsen, Germany","place":["Hannover"],"department":["Versorgungsforschung"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Felix","family":"Reschke","sequence":"additional","affiliation":[{"name":"Netzwerk f\u00fcr die Versorgung schwerkranker Kinder und Jugendlicher\n                    e.V., Niedersachsen, Germany","place":["Hannover"],"department":["Versorgungsforschung"]},{"name":"Kinder-\/Jugendkrankenhaus AUF DER BULT, Germany","place":["Hannover"],"department":["Abteilung Palliativversorgung"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"194","published-online":{"date-parts":[[2026,9,7]]},"reference":[{"key":"ref3","doi-asserted-by":"publisher","first-page":"1144","DOI":"10.1111\/hex.13092","article-title":"The challenges of caring for children who require complex medical care at home:\n                    \u201eThe go between for everyone is the parent and as the parent that\u2019s an awful lot\n                    of responsibility\u201c","volume":"23","author":"B F Page","year":"2020","journal-title":"Health Expect Int J Public Particip Health Care Health\n                    Policy"},{"key":"ref4","doi-asserted-by":"publisher","first-page":"1517","DOI":"10.1007\/s00431-023-04851-2","article-title":"Integrated care for children living with complex care needs: an evolutionary\n                    concept analysis","volume":"182","author":"L Cassidy","year":"2023","journal-title":"Eur J Pediatr"},{"key":"ref5","doi-asserted-by":"publisher","first-page":"e70091","DOI":"10.1111\/cch.70091","article-title":"Family Experiences of Integrated Care for Children With Medical Complexity: A\n                    Scoping Review","volume":"51","author":"Y Zurynski","year":"2025","journal-title":"Child Care Health Dev"},{"key":"ref7","doi-asserted-by":"publisher","DOI":"10.1055\/a-2415-6511","article-title":"Perspektiven von Familien mit (schwer-)kranken Kindern und Jugendlichen in\n                    Niedersachsen: Versorgung und Unterst\u00fctzung im Fokus \u2013 Analyse der aktuellen\n                    Situation und m\u00f6glicher Unterst\u00fctzungsangebote","author":"R Toenne","year":"2024","journal-title":"Gesundheitswesen Bundesverb Arzte Offentlichen Gesundheitsdienstes\n                    Ger"},{"key":"ref9","doi-asserted-by":"publisher","first-page":"167","DOI":"10.1016\/j.pedn.2024.02.018","article-title":"Caring for children with medical complexity at home: An integrative review","volume":"76","author":"D Geyer","year":"2024","journal-title":"J Pediatr Nurs"},{"key":"ref10","doi-asserted-by":"publisher","first-page":"70","DOI":"10.5152\/TurkArchPediatr.2024.23126","article-title":"Caregiver Burden and Depression in Parents of Children with Chronic\n                    Diseases","volume":"59","author":"\u015e G\u00fcven Baysal","year":"2024","journal-title":"Turk Arch Pediatr"},{"key":"ref11","doi-asserted-by":"publisher","first-page":"258","DOI":"10.30476\/IJCBNM.2019.73893.0","article-title":"Caregiver Burden and Its Associated Factors in Caregivers of Children and\n                    Adolescents with Chronic Conditions","volume":"7","author":"M Adib-Hajbaghery","year":"2019","journal-title":"Int J Community Based Nurs Midwifery"},{"key":"ref12","doi-asserted-by":"publisher","first-page":"12","DOI":"10.1111\/jpc.16297","article-title":"Impact of parental health literacy on the health outcomes of children with\n                    chronic disease globally: A systematic review","volume":"59","author":"E A Zaidman","year":"2023","journal-title":"J Paediatr Child Health"},{"key":"ref13","doi-asserted-by":"publisher","first-page":"155","DOI":"10.1037\/\/0033-2909.112.1.155","article-title":"A power primer","volume":"112","author":"J Cohen","year":"1992","journal-title":"Psychol Bull"},{"key":"ref15","doi-asserted-by":"publisher","first-page":"346","DOI":"10.1177\/1367493513496668","article-title":"Consequences of caring for a child with a chronic disease: Employment and\n                    leisure time of parents","volume":"18","author":"J Hatzmann","year":"2014","journal-title":"J Child Health Care Prof Work Child Hosp Community"},{"key":"ref17","doi-asserted-by":"publisher","DOI":"10.1007\/s10389-023-01950-0","article-title":"The Buddy intervention: designing an additional support system for the last year\n                    of life. Qualitative insights from triangulated interviews and focus group\n                    discussions","author":"A Kasdorf","year":"2023","journal-title":"J Public Health"}],"container-title":["Das Gesundheitswesen"],"original-title":[],"language":"de","link":[{"URL":"http:\/\/www.thieme-connect.de\/products\/ejournals\/pdf\/10.1055\/a-2939-7368.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,9,28]],"date-time":"2026-09-28T08:51:10Z","timestamp":1790585470000},"score":1,"resource":{"primary":{"URL":"http:\/\/www.thieme-connect.de\/DOI\/DOI?10.1055\/a-2939-7368"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,8,18]]},"references-count":11,"URL":"https:\/\/doi.org\/10.1055\/a-2939-7368","archive":["Portico","CLOCKSS"],"relation":{},"ISSN":["0941-3790","1439-4421"],"issn-type":[{"value":"0941-3790","type":"print"},{"value":"1439-4421","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2026,8,18]]},"published":{"date-parts":[[2026,8,18]]}}}