Amyotrofik Lateral Skleroz Hastalarının Bakım Verenlerine Yönelik Farkındalık Temelli Müdahalelerin Etkinliği: Kapsam Derlemesi
Year 2025,
Lutfiye İpek
,
Gokce Yagmur Gunes Gencer
,
Pınar Kısacık
,
Sibel Bozgeyik
Abstract
Amaç: Bu çalışmanın amacı, ALS hastalarının bakım verenlerine yönelik farkındalık temelli müdahalelerin etkinliğine ilişkin literatürü değerlendirmek ve özetlemektir.
Yöntemler: EBSCO, Scopus, PubMed ve Web of Science gibi elektronik veri tabanları kullanılarak literatür taraması gerçekleştirildi. Toplam 475 çalışmaya erişildi. Başlıklar ve özetler incelendikten sonra tam metin incelemesi için 19 çalışma dahil edildi. “ALS hastalarının bakım verenleri için farkındalık temelli müdahalelerin bakım veren yükü üzerindeki etkisi nedir?” gibi sorulara yanıt arandı. PRISMA akış şemasına uygun hareket edildi.
Bulgular: Bu kapsam derlemesine bir tane randomize kontrollü, iki tane ön test-son test tasarımlı, bir tane nitel, iki tane kohort çalışma olmak üzere 6 çalışma dahil edildi. ALS hastalarının bakım verenlerine yönelik farkındalık temelli müdahaleler üzerine yapılan çalışmaların 2016'dan beri devam etmesi, bu konunun güncelliğini koruduğunu gösterirken, çalışmaların sayısının yetersizliği de alandaki araştırma eksikliğini vurgulamaktadır. Araştırmalar, farkındalık temelli müdahalelerin ALS hastalarının bakım verenlerinin bakım yükü, anksiyete ve depresyon düzeylerini azaltma, yaşam kalitesi düzeyini artırma, psikolojik refahı iyileştirme potansiyelini vurguladığı görülmektedir.
Sonuç: Sınırlı sayıda çalışmaya rağmen, kanıtlar farkındalık temelli yaklaşımların bu popülasyon için değerli bir müdahale olarak potansiyel etkinliğini desteklemektedir. Konuyla ilgili daha fazla çalışmaya ihtiyaç olduğu düşünülmektedir.
Ethical Statement
A scoping review not involves human subjects, human material, human tissues, or human data. Therefore, the approval of an ethics committee was not necessary.
Supporting Institution
No funding.
References
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- 21. Burke T, Hardiman O, Pinto-Grau M, et al. Longitudinal predictors of caregiver burden in amyotrophic lateral sclerosis: a population-based cohort of patient-caregiver dyads. J Neurol. 2018;265(4):793-808. https://doi.org/10.1007/s00415-018-8770-6
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- 27. Huffer D, Hing W, Newton R, Clair M. Strength training for plantar fasciitis and the intrinsic foot musculature: A systematic review. Phys Ther Sport. 2017;24:44-52. https://doi.org/10.1016/j.ptsp.2016.08.008
- 28. Samoocha D, Bruinvels DJ, Elbers NA, Anema JR, van der Beek AJ. Effectiveness of web-based interventions on patient empowerment: a systematic review and meta-analysis. J Med Internet Res. 2010;12(2):e23. Published 2010 Jun 24. https://doi.org/10.2196/jmir.1286
- 29. Ipek L, Güneş Gencer GY. Is caregiver burden of patients with amyotrophic lateral sclerosis related to caregivers' mindfulness, quality of life, and patients' functional level. J Clin Neurosci. 2024;126:95-100. https://doi.org/10.1016/j.jocn.2024.06.007
- 30. Pagnini F, Phillips D, Haulman A, Bankert M, Simmons Z, Langer E. An online non-meditative mindfulness intervention for people with ALS and their caregivers: a randomized controlled trial. Amyotroph Lateral Scler Frontotemporal Degener. 2022;23(1-2):116-127. https://doi.org/10.1080/21678421.2021.1928707
- 31. Marconi A, Gragnano G, Lunetta C, et al. The experience of meditation for people with amyotrophic lateral sclerosis and their caregivers - a qualitative analysis. Psychol Health Med. 2016;21(6):762-768. https://doi.org/10.1080/13548506.2015.1115110
- 32. 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(1):35. https://doi.org/10.1186/s40359-019-0308-x
- 33. Shim M, Tilley JL, Im S, Price K, Gonzalez A. A Systematic Review of Mindfulness-Based Interventions for Patients with Mild Cognitive Impairment or Dementia and Caregivers. J Geriatr Psychiatry Neurol. 2021;34(6):528-554. https://doi.org/10.1177/0891988720957104
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- 35. Tramonti F, Bongioanni P, Leotta R, Puppi I, Rossi B. Age, gender, kinship and caregiver burden in amyotrophic lateral sclerosis. Psychol Health Med. 2015;20(1):41-46. https://doi.org/10.1080/13548506.2014.892627
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- 38. Lillo P, Mioshi E, Hodges JR. Caregiver burden in amyotrophic lateral sclerosis is more dependent on patients' behavioral changes than physical disability: a comparative study. BMC Neurol. 2012;12:156. https://doi.org/10.1186/1471-2377-12-156
- 39. Pagnini F, Di Credico C, Gatto R, et al. Meditation training for people with amyotrophic lateral sclerosis and their caregivers. J Altern Complement Med. 2014;20(4):272-275. https://doi.org/10.1089/acm.2013.0268
- 40. Tkatch R, Bazarko D, Musich S, et al. A Pilot Online Mindfulness Intervention to Decrease Caregiver Burden and Improve Psychological Well-Being. J Evid Based Complementary Altern Med. 2017;22(4):736-743. https://doi.org/10.1177/2156587217737204
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Effectiveness of the Mindfulness-Based Interventions for Caregivers of Patients with Amyotrophic Lateral Sclerosis: A Scoping Review
Year 2025,
Lutfiye İpek
,
Gokce Yagmur Gunes Gencer
,
Pınar Kısacık
,
Sibel Bozgeyik
Abstract
Objective: This study aimed to evaluate and summarize the literature on the effectiveness of mindfulness-based interventions for informal caregivers of the patients with ALS.
Methods: A scoping review was conducted using electronic databases such as EBSCO, Scopus, PubMed and Web of Science. Total of 475 studies were identified by searching through databases and other sources. After screening the titles and abstracts, 19 studies remained for full text review. Questions such as ‘What is the effect of awareness based interventions on caregiver burden for caregivers of ALS patients?’ were sought to be answered. The PRISMA flowchart was adhered to throughout the process.
Results: 6 studies were included in this scoping review; one RCT, two pre-post design studies, one qualitative study and two cohort study. The fact that studies on Mindfulness-Based Interventions for caregivers of patients with ALS have only been available since 2016, and the number of them is small, and demonstrates the lack and novelty of trials on this topic. The findings of this scoping review suggest that mindfulness-based interventions can significantly alleviate caregiver burden, enhance quality of life, and improve psychological well-being, including reductions in anxiety and depression, among caregivers of patients with ALS.
Conclusion: Despite the limited number of studies, the evidence supports the potential effectiveness of mindfulness-based approaches as a valuable support strategy for this population. It is believed that further research is required on this topic.
References
- 1. Zarei S, Carr K, Reiley L, et al. A comprehensive review of amyotrophic lateral sclerosis. Surg Neurol Int. 2015;6:171. https://doi.org/10.4103/2152-7806.169561
- 2. Hardiman O, Al-Chalabi A, Chio A, et al. Amyotrophic lateral sclerosis. Nat Rev Dis Primers. 2017;3:17071. http://dx.doi.org/10.1038/nrdp.2017.71
- 3. Kiernan MC, Vucic S, Cheah BC, et al. Amyotrophic lateral sclerosis. Lancet. 2011;377(9769):942-955. https://doi.org/10.1016/S0140-6736(10)61156-7
- 4. Chiò A, Gauthier A, Vignola A, et al. Caregiver time use in ALS. Neurology. 2006;67(5):902-904. https://doi.org/10.1212/01.wnl.0000233840.41688.df
- 5. Rabkin JG, Wagner GJ, Del Bene M. Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosom Med. 2000;62(2):271-279. https://journals.lww.com/bsam/abstract/2000/03000/resilience_and_distress_among_amyotrophic_lateral.20.aspx
- 6. de Wit J, Bakker LA, van Groenestijn AC, et al. Caregiver burden in amyotrophic lateral sclerosis: A systematic review. Palliat Med. 2018;32(1):231-245. https://doi.org/10.1177/0269216317709965
- 7. López-Bastida J, Perestelo-Pérez L, Montón-Alvarez F, Serrano-Aguilar P, Alfonso-Sanchez JL. Social economic costs and health-related quality of life in patients with amyotrophic lateral sclerosis in Spain. Amyotroph Lateral Scler. 2009;10(4):237-243. https://doi.org/10.1080/17482960802430781
- 8. Creemers H, de Morée S, Veldink JH, Nollet F, van den Berg LH, Beelen A. Factors related to caregiver strain in ALS: a longitudinal study. J Neurol Neurosurg Psychiatry. 2016;87(7):775-781. https://doi.org/10.1136/jnnp-2015-311651
- 9. Boerner K, Mock SE. Impact of patient suffering on caregiver well-being: the case of amyotrophic lateral sclerosis patients and their caregivers. Psychol Health Med. 2012;17(4):457-466. https://doi.org/10.1080/13548506.2011.613942
- 10. Chiò A, Gauthier A, Calvo A, Ghiglione P, Mutani R. Caregiver burden and patients' perception of being a burden in ALS. Neurology. 2005;64(10):1780-1782. https://doi.org/10.1212/01.WNL.0000162034.06268.37
- 11. Kabat-Zinn J. Mindfulness-based interventions in context: past, present, and future. Clin Psychol Sci Pract. 2003; 10(2): 144-156. https://doi.org/10.1093/clipsy.bpg016
- 12. Li G, Yuan H, Zhang W. The Effects of Mindfulness-Based Stress Reduction for Family Caregivers: Systematic Review. Arch Psychiatr Nurs. 2016;30(2):292-299. https://doi.org/10.1016/j.apnu.2015.08.014
- 13. Siegel RD, Germer CK, Olendzki A. Mindfulness: What is it? Where did it come from? In F. Didonna (Ed.), Clinical handbook of mindfulness. Springer Science + Business Media; 2009: 17–35. https://doi.org/10.1007/978-0-387-09593-6_2
- 14. Bodhi B. What does mindfulness really mean? A canonical perspective. Mindfulness. 2013; 12(1): 19–39. https://doi.org/10.1080/14639947.2011.564813
- 15. Weinstein, N, Brown KW, Ryan, RM. A multi-method examination of the effects of mindfulness on stress attribution, coping, and emotional well-being. J Res Pers. 2009; 43(3): 374-385. https://doi.org/10.1016/j.jrp.2008.12.008
- 16. Pagnini F, Phillips D, Bosma CM, Reece A, Langer E. Mindfulness as a Protective Factor for the Burden of Caregivers of Amyotrophic Lateral Sclerosis Patients. J Clin Psychol. 2016;72(1):101-111. https://doi.org/10.1002/jclp.22235
- 17. Burke T, Wilson O'Raghallaigh J, Maguire S, et al. Group interventions for amyotrophic lateral sclerosis caregivers in Ireland: a randomised controlled trial protocol. BMJ Open. 2019;9(9):e030684. https://doi.org/10.1136/bmjopen-2019-030684
- 18. Murfield J, Moyle W, O'Donovan A. Mindfulness- and compassion-based interventions for family carers of older adults: A scoping review. Int J Nurs Stud. 2021;116:103495. https://doi.org/10.1016/j.ijnurstu.2019.103495
- 19. Ugalde A, Mathers S, Hennessy Anderson N, Hudson P, Orellana L, Gluyas C. A self-care, problem-solving and mindfulness intervention for informal caregivers of people with motor neurone disease: A pilot study. Palliat Med. 2018;32(4):726-732. https://doi.org/10.1177/0269216317743434
- 20. Bruletti G, Comini L, Scalvini S, et al. A two-year longitudinal study on strain and needs in caregivers of advanced ALS patients. Amyotroph Lateral Scler Frontotemporal Degener. 2015;16(3-4):187-195. https://doi.org/10.3109/21678421.2014.974616
- 21. Burke T, Hardiman O, Pinto-Grau M, et al. Longitudinal predictors of caregiver burden in amyotrophic lateral sclerosis: a population-based cohort of patient-caregiver dyads. J Neurol. 2018;265(4):793-808. https://doi.org/10.1007/s00415-018-8770-6
- 22. Grant MJ, Booth A. A typology of reviews: an analysis of 14 review types and associated methodologies. Health Info Libr J. 2009;26(2):91-108. https://doi.org/10.1111/j.1471-1842.2009.00848.x
- 23. Munn Z, Peters MDJ, Stern C, Tufanaru C, McArthur A, Aromataris E. Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Med Res Methodol. 2018;18(1):143. https://doi.org/10.1186/s12874-018-0611-x
- 24. Arksey H, O'Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8(1):19-32. https://doi.org/10.1080/1364557032000119616
- 25. Peters MDJ, Godfrey C, McInerney P, Munn Z, Tricco AC, Khalil, H. Chapter 11: Scoping Reviews. In: Aromataris E, Munn Z (Editors). 2020;169(7):467-473. https://doi.org/10.46658/JBIMES-20-12
- 26. Downs SH, Black N. The feasibility of creating a checklist for the assessment of the methodological quality both of randomised and non-randomised studies of health care interventions. J Epidemiol Community Health. 1998;52(6):377-384. https://jech.bmj.com/content/52/6/377
- 27. Huffer D, Hing W, Newton R, Clair M. Strength training for plantar fasciitis and the intrinsic foot musculature: A systematic review. Phys Ther Sport. 2017;24:44-52. https://doi.org/10.1016/j.ptsp.2016.08.008
- 28. Samoocha D, Bruinvels DJ, Elbers NA, Anema JR, van der Beek AJ. Effectiveness of web-based interventions on patient empowerment: a systematic review and meta-analysis. J Med Internet Res. 2010;12(2):e23. Published 2010 Jun 24. https://doi.org/10.2196/jmir.1286
- 29. Ipek L, Güneş Gencer GY. Is caregiver burden of patients with amyotrophic lateral sclerosis related to caregivers' mindfulness, quality of life, and patients' functional level. J Clin Neurosci. 2024;126:95-100. https://doi.org/10.1016/j.jocn.2024.06.007
- 30. Pagnini F, Phillips D, Haulman A, Bankert M, Simmons Z, Langer E. An online non-meditative mindfulness intervention for people with ALS and their caregivers: a randomized controlled trial. Amyotroph Lateral Scler Frontotemporal Degener. 2022;23(1-2):116-127. https://doi.org/10.1080/21678421.2021.1928707
- 31. Marconi A, Gragnano G, Lunetta C, et al. The experience of meditation for people with amyotrophic lateral sclerosis and their caregivers - a qualitative analysis. Psychol Health Med. 2016;21(6):762-768. https://doi.org/10.1080/13548506.2015.1115110
- 32. 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(1):35. https://doi.org/10.1186/s40359-019-0308-x
- 33. Shim M, Tilley JL, Im S, Price K, Gonzalez A. A Systematic Review of Mindfulness-Based Interventions for Patients with Mild Cognitive Impairment or Dementia and Caregivers. J Geriatr Psychiatry Neurol. 2021;34(6):528-554. https://doi.org/10.1177/0891988720957104
- 34. Oh J, An JW, Oh KW, et al. Depression and caregiving burden in families of patients with amyotrophic lateral sclerosis. J Korean Acad Nurs. 2015;45(2):202-210. https://doi.org/10.4040/jkan.2015.45.2.202
- 35. Tramonti F, Bongioanni P, Leotta R, Puppi I, Rossi B. Age, gender, kinship and caregiver burden in amyotrophic lateral sclerosis. Psychol Health Med. 2015;20(1):41-46. https://doi.org/10.1080/13548506.2014.892627
- 36. Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014;311(10):1052-1060. https://doi.org/10.1001/jama.2014.304
- 37. 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(12):923-926. https://doi.org/10.1212/01.wnl.0000257093.53430.a8
- 38. Lillo P, Mioshi E, Hodges JR. Caregiver burden in amyotrophic lateral sclerosis is more dependent on patients' behavioral changes than physical disability: a comparative study. BMC Neurol. 2012;12:156. https://doi.org/10.1186/1471-2377-12-156
- 39. Pagnini F, Di Credico C, Gatto R, et al. Meditation training for people with amyotrophic lateral sclerosis and their caregivers. J Altern Complement Med. 2014;20(4):272-275. https://doi.org/10.1089/acm.2013.0268
- 40. Tkatch R, Bazarko D, Musich S, et al. A Pilot Online Mindfulness Intervention to Decrease Caregiver Burden and Improve Psychological Well-Being. J Evid Based Complementary Altern Med. 2017;22(4):736-743. https://doi.org/10.1177/2156587217737204
- 41. Parks SM, Novielli KD. A practical guide to caring for caregivers. Am Fam Physician. 2000;62(12):2613-2622. https://www.aafp.org/pubs/afp/issues/2000/1215/p2613.html
- 42. Brown KW, Coogle CL, Wegelin J. A pilot randomized controlled trial of mindfulness-based stress reduction for caregivers of family members with dementia. Aging Ment Health. 2016;20(11):1157-1166. https://doi.org/10.1080/13607863.2015.1065790
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