Psychologisch geleitete Gruppentreffen für Angehörige von ALS-Patient*innen

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 Unterstützung

Key words

Amyotrophic Lateral Sclerosis - Caregiver burden - Multi-professional care - Psychosocial support

Publication History

Received: 14 June 2023

Accepted: 11 August 2023

Article published online:
06 November 2023

• Literatur

• 1 Logroscino G, Traynor BJ, Hardiman O. et al. Incidence of amyotrophic lateral sclerosis in Europe. J Neurol Neurosurg Psychiatry 2010; 81: 385-390 DOI: 10.1136/jnnp.2009.183525.
• 2 Brown CA, Lally C, Kupelian V. et al. Estimated Prevalence and Incidence of Amyotrophic Lateral Sclerosis and SOD1 and C9orf72 Genetic Variants. Neuroepidemiology 2021; 55: 342-353 DOI: 10.1159/000516752.
• 3 Chiò A, Logroscino G, Traynor BJ. et al. Global epidemiology of amyotrophic lateral sclerosis: a systematic review of the published literature. Neuroepidemiology 2013; 41: 118-130 DOI: 10.1159/000351153.
• 4 Funke A, Spittel S, Grehl T. et al. Provision of assistive technology devices among people with ALS in Germany: a platform-case management approach. Amyotroph Lateral Scler Frontotemporal Degener 2018; 19: 342-350 DOI: 10.1080/21678421.2018.1431786.
• 5 de Wit J, Bakker LA, van Groenestijn AC. et al. Caregiver burden in amyotrophic lateral sclerosis: A systematic review. Palliat Med 2018; 32: 231-245 DOI: 10.1177/0269216317709965.
• 6 Schischlevskij P, Cordts I, Günther R. et al. Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers’ Lives. Brain Sci 2021; 11: 748 DOI: 10.3390/brainsci11060748.
• 7 Galvin M, Gavin T, Mays I. et al. Individual quality of life in spousal ALS patient-caregiver dyads. Health Qual Life Outcomes 2020; 18: 371 DOI: 10.1186/s12955-020-01551-5.
• 8 Siciliano M, Santangelo G, Trojsi F. et al. Coping strategies and psychological distress in caregivers of patients with Amyotrophic Lateral Sclerosis (ALS). Amyotroph Lateral Scler Frontotemporal Degener 2017; 18: 367-377 DOI: 10.1080/21678421.2017.1285316.
• 9 de Wit J, Bakker LA, van Groenestijn AC. et al. Psychological distress and coping styles of caregivers of patients with amyotrophic lateral sclerosis: a longitudinal study. Amyotroph Lateral Scler Frontotemporal Degener 2019; 20: 235-241 DOI: 10.1080/21678421.2018.1534976.
• 10 Gauthier A, Vignola A, Calvo A. et al. A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology 2007; 68: 923-926 DOI: 10.1212/01.wnl.0000257093.53430.a8.
• 11 Linse K, Aust E, Günther R. et al. Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis – How Can We Improve Holistic Care in ALS?. J Clin Med 2022; 11: 254 DOI: 10.3390/jcm11010254.
• 12 Larsson BJ, Fröjd C, Nordin K. et al. Relatives of patients with amyotrophic lateral sclerosis: Their experience of care and support. Palliat Support Care 2015; 13: 1569-1577 DOI: 10.1017/S1478951515000188.
• 13 Anderson NH, Gluyas C, Mathers S. et al. “A monster that lives in our lives”: experiences of caregivers of people with motor neuron disease and identifying avenues for support. BMJ Support Palliat Care 2019; 9: e27 DOI: 10.1136/bmjspcare-2015-001057.
• 14 Andersen PM, Abrahams S, Borasio GD. et al. EFNS guidelines on the Clinical Management of Amyotrophic Lateral Sclerosis (MALS) – revised report of an EFNS task force. Eur J Neurol 2012; 19: 360-375 DOI: 10.1111/j.1468-1331.2011.03501.x.
• 15 Esser P, Metelmann M, Hartung T. et al. Psychosocial Care For Patients With Amyotrophic Lateral Sclerosis: A Narrative Review. Psychother Psychosom Med Psychol 2019; 69: 372-381 DOI: 10.1055/a-0806-7862.
• 16 O'Brien MR, Whitehead B, Jack BA. et al. The need for support services for family carers of people with motor neurone disease (MND): views of current and former family caregivers a qualitative study. Disabil Rehabil 2012; 34: 247-256 DOI: 10.3109/09638288.2011.605511.
• 17 de Wit J, Schröder CD, El Mecky J. et al. Support needs of caregivers of patients with amyotrophic lateral sclerosis: A qualitative study. Palliat Support Care 2018; 17: 195-201 DOI: 10.1017/S1478951517001213.
• 18 D'Alvano G, Buonanno D, Passaniti C. et al. Support Needs and Interventions for Family Caregivers of Patients with Amyotrophic Lateral Sclerosis (ALS): A Narrative Review with Report of Telemedicine Experiences at the Time of COVID-19 Pandemic. Brain Sci 2021; 12: 49 DOI: 10.3390/brainsci12010049.
• 19 Cohen SR, Mount BM, Strobel MG. et al. The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med 1995; 9: 207-219 DOI: 10.1177/026921639500900306.
• 20 Abdulla S, Vielhaber S, Körner S. et al. Validation of the German version of the extended ALS functional rating scale as a patient-reported outcome measure. J Neurol 2013; 260: 2242-2255 DOI: 10.1007/s00415-013-6955-6.
• 21 Cipolletta S, Gammino GR, Francescon P. et al. Mutual support groups for family caregivers of people with amyotrophic lateral sclerosis in Italy: A pilot study. Health Soc Care Community 2018; 26: 556-563 DOI: 10.1111/hsc.12558.
• 22 Bilenchi VA, Banfi P, Pagnini F. et al. Psychoeducational groups for people with Amyotrophic Lateral Sclerosis and their caregiver: a qualitative study. Neurol Sci 2022; 43: 4239-4255 DOI: 10.1007/s10072-022-05930-2.
• 23 de Wit J, Vervoort SCJM, van Eerden E. et al. User perspectives on a psychosocial blended support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: a qualitative study. BMC Psychol 2019; 7: 35 DOI: 10.1186/s40359-019-0308-x.
• 24 Ozanne AO, Graneheim UH, Strang S. Struggling to find meaning in life among spouses of people with ALS. Palliat Support Care 2015; 13: 909-916 DOI: 10.1017/s1478951514000625.
• 25 Stutzki R, Weber M, Reiter-Theil S. et al. Attitudes towards hastened death in ALS: a prospective study of patients and family caregivers. Amyotroph Lateral Scler Frontotemporal Degener 2014; 15: 68-76 DOI: 10.3109/21678421.2013.837928.
• 26 Caga J, Kiernan MC, Piguet O. A Systematic Review of Caregiver Coping Strategies in Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. J Geriatr Psychiatry Neurol 2021; 35: 763-777 DOI: 10.1177/08919887211060016.
• 27 Ugalde A, Mathers S, Hennessy Anderson N. et al. A self-care, problem-solving and mindfulness intervention for informal caregivers of people with motor neurone disease: A pilot study. Palliat Med 2018; 32: 726-732 DOI: 10.1177/0269216317743434.
• 28 Williams MT, Donnelly JP, Holmlund T. et al. ALS: Family caregiver needs and quality of life. Amyotroph Lateral Scler 2008; 9: 279-286 DOI: 10.1080/17482960801934148.
• 29 De Wit J, Beelen A, Drossaert CHC. et al. Blended psychosocial support for partners of patients with ALS and PMA: results of a randomized controlled trial. Amyotroph Lateral Scler Frontotemporal Degener 2020; 21: 344-354 DOI: 10.1080/21678421.2020.1757114.
• 30 Gordon JM, Creutzfeldt CJ. Palliative care, evidence, and ALS: The baby and the bathwater. Neurology 2020; 95: 765-766 DOI: 10.1212/wnl.0000000000010865.
• 31 Ando H, Cousins R, Young CA. Exploring and Addressing ‛Concerns’ for Significant Others to Extend the Understanding of Quality of Life With Amyotrophic Lateral Sclerosis: A Qualitative Study. J Cent Nerv Syst 2019; 11: 1-10 DOI: 10.1177/1179573519859360.
• 32 Chiò A, Gauthier A, Calvo A. et al. Caregiver burden and patients’ perception of being a burden in ALS. Neurology 2005; 64: 1780-1782 DOI: 10.1212/01.WNL.0000162034.06268.37.
• 33 Foley G, Hynes G. Decision-making among patients and their family in ALS care: a review. Amyotroph Lateral Scler Frontotemporal Degener 2018; 19: 173-193 DOI: 10.1080/21678421.2017.1353099.
• 34 Hogden A, Greenfield D, Nugus P. et al. What are the roles of carers in decision-making for amyotrophic lateral sclerosis multidisciplinary care?. Patient Prefer Adherence 2013; 7: 171-181 DOI: 10.2147/PPA.S40783.
• 35 Poppe C, Iseli LM, Verwey M. et al. Bereavement and Support Experiences of Informal Caregivers of Persons with Amyotrophic Lateral Sclerosis: A Qualitative Study. J Soc Work End Life Palliat Care 2022; 18: 63-79 DOI: 10.1080/15524256.2021.1976352.