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DOI: 10.1055/a-2156-9013
Psychologisch geleitete Gruppentreffen für Angehörige von ALS-Patient*innen
Psychologically guided group meetings for family caregivers of ALS patientsFördermittel Andreas Hermann wird von der Hermann und Lilly Schilling Stiftung für medizinische Forschung im Stifterverband unterstützt.

Zusammenfassung
Hintergrund Der Verlauf der Amyotrophen Lateralsklerose (ALS) konfrontiert die Betroffenen selbst, aber auch ihre An- und Zugehörigen nicht nur mit zunehmenden körperlichen Einschränkungen, sondern auch mit psychosozialen sowie sozialmedizinisch-organisatorischen Belastungen. Die Angehörigen sind häufig eng in die Pflege und Betreuung involviert und selbst hoch belastet, spezifische Angebote zu ihrer Entlastung werden seit längerem empfohlen. Ziel dieser Studie war die Evaluation der Umsetzbarkeit und Akzeptanz von psychologisch geleiteten supportiven Angehörigentreffen in einer ALS-Spezialambulanz.
Methoden Die themenoffenen Gruppentreffen fanden ca. alle drei Monate statt. Über einen Zeitraum von gut zwei Jahren wurden von insgesamt 26 Angehörigen von ALS-Patient*innen Daten zur subjektiven Relevanz der Inhalte der Treffen, ihrer Nützlichkeit und eventuelle Kritik erhoben.
Ergebnisse In den Angehörigentreffen wurden sowohl praktisch-organisatorische Belange besprochen als auch psychosoziale Themen, zum Beispiel Selbstfürsorge, der Umgang mit Emotionen sowie der Umgang bzw. Konflikte mit den Erkrankten sowie Dritten. Die Treffen wurden überwiegend als hilfreich, verständlich und persönlich relevant bewertet und der Austausch in einer „Schicksalsgemeinschaft“ als sehr entlastend wahrgenommen.
Diskussion Die ALS-Angehörigentreffen waren im beschriebenen Format gut durchführbar und wurden gut angenommen. Angebote wie das hier berichtete bieten soziale, emotionale und praktische Unterstützung und sind damit geeignet, um die hoch belasteten Angehörigen von ALS-Patient*innen zu entlasten. Die quantitative Überprüfung ihrer Wirksamkeit ist aufgrund der Komplexität der Lebenssituation sowie methodisch herausfordernd. Aufgrund des geringen Aufwandes der Implementierung sollten psychosoziale Unterstützungsangebote für Angehörige ein Bestandteil der Regelversorgung bei ALS sein, im Sinne eines multidimensionalen Versorgungskonzeptes mit palliativem Leitbild.
Abstract
Background The course of amyotrophic lateral sclerosis (ALS,) associated with progressive physical limitations, is a challenge to the patients themselves and also to their family caregivers, who have to deal with psychosocial, socio-medical and organizational issues. Caregivers are often closely involved and heavily burdened themselves, which is why specific support is recommended. The aim of this study was to investigate the feasibility and acceptance of psychologically guided supportive group meetings for family caregivers in a specialist ALS outpatient clinic.
Methods Over a period of two years, data were collected from a total of 26 caregivers of ALS patients in order to evaluate the relevance, usefulness and criticisms of open-topic meetings that took place every three months.
Results Topics discussed in the meetings included mainly psychosocial issues such as self-care, dealing with emotions or with conflicts with the patients and third parties, as well as practical and organizational matters. The meetings were predominantly rated as helpful, well understandable and personally relevant and the exchange in a “community of destiny” was perceived as emotionally relieving.
Discussion The ALS caregiver group meetings in the described format were easy to carry out and well accepted. Supportive interventions, such as the one reported here, might be a valuable component of ALS care, to relieve the highly burdened caregivers of ALS-patients by providing them with social, emotional and practical support. However, the quantitative verification of the intervention’s effectiveness is challenging – both methodologically and due to the caregivers’ complex life situation. Psychosocial support services for ALS caregivers are feasible with little effort and should be an integral part of the standard ALS care based on a multi-dimensional, palliative care concept.
Schlüsselwörter
Amyotrophe Lateralsklerose - Angehörigenbelastung - Multiprofessionelle Versorgung - Psychosoziale UnterstützungKey words
Amyotrophic Lateral Sclerosis - Caregiver burden - Multi-professional care - Psychosocial supportPublication History
Received: 14 June 2023
Accepted: 11 August 2023
Article published online:
06 November 2023
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Germany
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