Amyotrophic lateral sclerosis in Argentina: unveiling the burden of treatment through patient and caregiver perspectives

References

• Masrori P, Van Damme P. Amyotrophic lateral sclerosis: a clinical review. Eur J Neurol. 2020;27(10):1918–1929.
   PubMed Web of Science ®Google Scholar
• Wijesekera LC, Nigel Leigh P. Amyotrophic lateral sclerosis. Orphanet J Rare Dis. 2009;4(1):3. doi: 10.1186/1750-1172-4-3.
   PubMedGoogle Scholar
• Rusina R, Vandenberghe R, Bruffaerts R. Cognitive and behavioral manifestations in ALS: beyond motor system involvement. Diagnostics (Basel). 2021;11(4):624.
   Google Scholar
• Cipolletta S, Amicucci L. The family experience of living with a person with amyotrophic lateral sclerosis: a qualitative study. Int J Psychol. 2015;50(4):288–294.
   PubMed Web of Science ®Google Scholar
• Conroy E, Kennedy P, Heverin M, et al. Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixed-methods study. BMJ Open. 2023;13(1):e064254.
   PubMed Web of Science ®Google Scholar
• Conroy É, Kennedy P, Heverin M, et al. Informal caregivers in amyotrophic lateral sclerosis: a multi-centre, exploratory study of burden and difficulties. Brain Sci. 2021;11(8):1094.
   PubMed Web of Science ®Google Scholar
• 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. 2019;17(2):195–201.
   PubMed Web of Science ®Google Scholar
• Galvin M, Gavin T, Mays I, et al. Individual quality of life in spousal ALS patient-caregiver dyads. Health Qual Life Outcomes. 2020;18(1):371.
   PubMed Web of Science ®Google Scholar
• Yuan M-M, Peng X, Zeng T-Y, et al. The illness experience for people with amyotrophic lateral sclerosis: a qualitative study. J Clin Nurs. 2021;30(9-10):1455–1463.
   PubMed Web of Science ®Google Scholar
• Foley G, Timonen V, Hardiman O. "I hate being a burden": the patient perspective on carer burden in amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2016;17(5-6):351–357.
   PubMed Web of Science ®Google Scholar
• Winther D, Kirkegaard Lorenzen C, Dreyer P. Everyday life experiences of close relatives of people with amyotrophic lateral sclerosis receiving home mechanical ventilation-A qualitative study. J Clin Nurs. 2020;29(13-14):2306–2316.
   PubMed Web of Science ®Google Scholar
• Poppe C, Schweikert K, Krones T, et al. Supportive needs of informal caregivers of people with amyotrophic lateral sclerosis in Switzerland: a qualitative study. Palliat Care Soc Pract. 2022;16:26323524221077700.
   Google Scholar
• Galvin M, Carney S, Corr B, et al. Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis. BMJ Open. 2018;8(1):e018721.
   PubMed Web of Science ®Google Scholar
• Flemming K, Turner V, Bolsher S, et al. The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: a qualitative systematic review. Palliat Med. 2020;34(6):708–730. doi: 10.1177/0269216320908775.
   PubMed Web of Science ®Google Scholar
• Poppe C, Koné I, Iseli LM, et al. Differentiating needs of informal caregivers of individuals with ALS across the caregiving course: a systematic review. Amyotroph Lateral Scler Frontotemporal Degener. 2020;21(7-8):519–541.
   PubMed Web of Science ®Google Scholar
• Corbin J, Strauss A. Managing chronic illness at home: three lines of work. Qual Sociol. 1985;8(3):224–247. doi: 10.1007/BF00989485.
   Google Scholar
• Clarke AE, Shim JK, Mamo L, et al. Biomedicalization: technoscientific transformations of health, illness, and U.S. biomedicine. Am Sociol Rev. 2003;68(2):161–194. doi: 10.2307/1519765.
   Web of Science ®Google Scholar
• Grimberg M. Narrativas del cuerpo: experiencia cotidiana y género en personas que viven con vih. Cuadernos de Antropología Social. 2003;(17):79–99.
   Google Scholar
• Pecheny M, Manzelli H, Jones D. ; 2002.Vida cotidiana con VIH/Sida y/o hepatitis C: diagnóstico, tratamiento y proceso de expertización. Buenos Aires: Centro de Estudios de Estado y Sociedad.
   Google Scholar
• Holman HR. Chronic disease and the healthcare crisis. Chronic Illn. 2005;1(4):265–274. doi: 10.1179/174239505x56049.
   PubMedGoogle Scholar
• Mair F, May C. Thinking about the burden of treatment. BMJ. 2014;349(v10 4):g6680–g6680.
   PubMedGoogle Scholar
• May CR, Eton DT, Boehmer K, et al. Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness. BMC Health Serv Res. 2014;14(1):281.
   PubMedGoogle Scholar
• Teixeira CG, Duarte MdCMB, Prado CM, et al. Impact of chronic kidney disease on quality of life, lung function, and functional capacity. J Pediatr (Rio J). 2014;90(6):580–586.
   PubMedGoogle Scholar
• Lastrucci V, Lorini C, Caini S, Florence Health Literacy Research G., et al. Health literacy as a mediator of the relationship between socioeconomic status and health: a cross-sectional study in a population-based sample in Florence. PLoS One. 2019;14(12):e0227007.
   PubMed Web of Science ®Google Scholar
• Simandan D. Rethinking the health consequences of social class and social mobility. Soc Sci Med. 2018;200:258–261.
   PubMed Web of Science ®Google Scholar
• Jan S, Laba T-L, Essue BM, et al. Action to address the household economic burden of non-communicable diseases. Lancet. 2018;391(10134):2047–2058. doi: 10.1016/S0140-6736(18)30323-4.PubMed PMID: 29627161.
   PubMed Web of Science ®Google Scholar
• Findling L, López EM. De cuidados y cuidadoras: Acciones públicas y privadas. Buenos Aires: Editorial Biblos; 2015.
   Google Scholar
• La Esclerosis Lateral Amiotrófica en América Latina y el Caribe. Buenos Aires: Esteban Bullrich Foundation (Fundación Esteban Bullrich); 2021; [10 May 2024]. Available from: https://fundacionestebanbullrich.org.
   Google Scholar
• Roberti J, Alonso JP, Blas L, et al. How do social and economic vulnerabilities shape the work of participating in care? Everyday experiences of people living with kidney failure in Argentina. Soc Sci Med. 2022;293:114666.
   PubMed Web of Science ®Google Scholar
• Demain S, Gonçalves A-C, Areia C, et al. Living with, managing and minimising treatment burden in long term conditions: a systematic review of qualitative research. PLoS One. 2015;10(5):e0125457.
   PubMed Web of Science ®Google Scholar
• Sav A, King MA, Whitty JA, et al. Burden of treatment for chronic illness: a concept analysis and review of the literature. Health Expect. 2015;18(3):312–324.
   PubMed Web of Science ®Google Scholar
• Abraham G, Varughese S, Thandavan T, et al. Chronic kidney disease hotspots in developing countries in South Asia. Clin Kidney J. 2016;9(1):135–141.
   PubMed Web of Science ®Google Scholar
• Costa L, Comassetto I, Santos RMD, et al. Existential transformations in the process of facing amyotrophic lateral sclerosis by the family caregiver. Rev Gaucha Enferm. 2021;42:e20200307.
   PubMedGoogle Scholar
• May CR, Chew-Graham CA, Gallacher KI, et al. EXPERTS II - How are patient and caregiver participation in health and social care shaped by experienced burden of treatment and social inequalities? Protocol for a qualitative synthesis. NIHR Open Res. 2023;3:31.
   PubMedGoogle Scholar
• May CR, Masters J, Welch L, et al. EXPERTS 1-experiences of long-term life-limiting conditions among patients and carers: protocol for a qualitative meta-synthesis and conceptual modelling study. BMJ Open. 2015;5(4):e007372.
   PubMed Web of Science ®Google Scholar
• Sav A, Kendall E, McMillan SS, et al. You say treatment, I say hard work’: treatment burden among people with chronic illness and their carers in Australia. Health Soc Care Community. 2013;21(6):665–674.
   PubMed Web of Science ®Google Scholar
• Giordano A, De Panfilis L, Perin M, et al. Advance care planning in neurodegenerative disorders: a scoping review. Int J Environ Res Public Health. 2022;19(2):803.
   PubMed Web of Science ®Google Scholar
• Gillespie J, Przybylak-Brouillard A, Watt CL. The palliative care information needs of patients with amyotrophic lateral sclerosis and their informal caregivers: a scoping review. J Pain Symptom Manage. 2021;62(4):848–862. doi: 10.1016/j.jpainsymman.2021.03.008.
   PubMed Web of Science ®Google Scholar
• Long R, Havics B, Zembillas M, et al. Elucidating the end-of-life experience of persons with amyotrophic lateral sclerosis. Holist Nurs Pract. 2019;33(1):3–8.
   PubMed Web of Science ®Google Scholar
• de Wit J, Bakker LA, van Groenestijn AC, et al. Caregiver burden in amyotrophic lateral sclerosis: a systematic review. Palliat Med. 2017;32(1):231–245. doi: 10.1177/0269216317709965.
   PubMed Web of Science ®Google Scholar
• Murray L, Butow PN. Advance care planning in motor neuron disease: a systematic review. Palliat Support Care. 2016;14(4):411–432.
   PubMed Web of Science ®Google Scholar
• Goldsmith L. Using framework analysis in applied qualitative research. TQR. 2021;26(6):2061–2076. doi: 10.46743/2160-3715/2021.5011.
   Google Scholar
• Smith J, Firth J. Qualitative data analysis: the framework approach. Nurse Res. 2011;18(2):52–62. doi: 10.7748/nr2011.01.18.2.52.c8284.
   PubMedGoogle Scholar
• WMA. World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA. 2013;310(20):2191–2194.
   PubMed Web of Science ®Google Scholar
• O’Brien MR, Whitehead B, Jack BA, et al. From symptom onset to a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND): experiences of people with ALS/MND and family carers - a qualitative study. Amyotroph Lateral Scler. 2011;12(2):97–104.
   PubMed Web of Science ®Google Scholar
• Ozanne A, Graneheim UH. Understanding the incomprehensible - patients’ and spouses’ experiences of comprehensibility before, at and after diagnosis of amyotrophic lateral sclerosis. Scand J Caring Sci. 2018;32(2):663–671.
   PubMed Web of Science ®Google Scholar
• Xu RS, Yuan M. Considerations on the concept, definition, and diagnosis of amyotrophic lateral sclerosis. Neural Regen Res. 2021;16(9):1723–1729.
   PubMed Web of Science ®Google Scholar
• Cipolletta S, Gammino GR, Palmieri A. Illness trajectories in patients with amyotrophic lateral sclerosis: how illness progression is related to life narratives and interpersonal relationships. J Clin Nurs. 2017;26(23-24):5033–5043.
   PubMed Web of Science ®Google Scholar
• Galvin M, Corr B, Madden C, et al. Caregiving in ALS - a mixed methods approach to the study of Burden. BMC Palliat Care. 2016;15(1):81.
   PubMedGoogle Scholar
• Giusiano S, Peotta L, Iazzolino B, et al. Amyotrophic lateral sclerosis caregiver burden and patients’ quality of life during COVID-19 pandemic. Amyotroph Lateral Scler Frontotemporal Degener. 2022;23(1-2):146–148.
   PubMed Web of Science ®Google Scholar
• Kennedy P, Conroy É, Heverin M, et al. Burden and benefit-A mixed methods study of informal Amyotrophic Lateral Sclerosis caregivers in Ireland and the Netherlands. Int J Geriatr Psychiatry. 2022;37(5):2022.
   Web of Science ®Google Scholar
• Palazzo L, Pizzolato L, Rigo M, et al. Amyotrophic lateral sclerosis and its management during the COVID-19 pandemic: a qualitative study with thematic analysis of patients and caregivers who participated in self-help groups. Behav Sci (Basel). 2023;13(10):822.
   PubMedGoogle Scholar
• Audulv A, Asplund K, Norbergh KG. The integration of chronic illness self-management. Qual Health Res. 2012;22(3):332–345.
   PubMed Web of Science ®Google Scholar
• Edgar A. The expert patient: illness as practice. Med Health Care Philos. 2005;8(2):165–171.
   PubMedGoogle Scholar
• May C. The hard work of being ill. Chronic Illn. 2006;2(3):161–162. doi: 10.1179/174592006x129464.
   PubMedGoogle Scholar
• 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(6):748.
   PubMed Web of Science ®Google Scholar
• Cipolletta S, Reggiani M. End-of-life care after the legal introduction of advance directives: A qualitative study involving healthcare professionals and family caregivers of patients with amyotrophic lateral sclerosis. Palliat Med. 2021;35(1):209–218.
   PubMed Web of Science ®Google Scholar
• Genuis SK, Luth W, Campbell S, et al. Communication about end of life for patients living with amyotrophic lateral sclerosis: a scoping review of the empirical evidence. Front Neurol. 2021;12:683197.
   PubMed Web of Science ®Google Scholar
• Oliver DJ, Borasio GD, Caraceni A, et al. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol. 2016;23(1):30–38.
   PubMed Web of Science ®Google Scholar
• Thorne S, Kirkham SR, O’Flynn-Magee K. The analytic challenge in interpretive description. Int J Qual Methods. 2016;3(1):1–11. doi: 10.1177/160940690400300101.
   Google Scholar