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Research Papers

What can we learn from the personal insights of individuals living and coping with Multiple Sclerosis?

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Pages 662-674 | Accepted 01 Mar 2007, Published online: 07 Jul 2009

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Read on this site (19)

Erin Faraclas. (2023) Interventions to Improve Quality of Life in Multiple Sclerosis: New Opportunities and Key Talking Points. Degenerative Neurological and Neuromuscular Disease 13, pages 55-68.
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Maja Liković & Marko Buljevac. (2023) ‶You look really good, I don’t know why you came here″: persons with multiple sclerosis´ perspectives on social support. Home Health Care Services Quarterly 42:3, pages 243-264.
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Heather Eustis & Prudence Plummer. (2022) Self-efficacy training as an adjunct to exercise in a person with progressive multiple sclerosis: a case report. Physiotherapy Theory and Practice 38:13, pages 3126-3135.
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Robert Simpson, Sharon Simpson, Marina Wasilewski, Stewart Mercer & Maggie Lawrence. (2022) Mindfulness-based interventions for people with multiple sclerosis: a systematic review and meta-aggregation of qualitative research studies. Disability and Rehabilitation 44:21, pages 6179-6193.
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Nina Nissen, Jeanet Lemche, Camilla Møhring Reestorff, Marianne Schmidt, Anders Guldhammer Skjerbæk, Lasse Skovgaard, Egon Stenager, Inge Gjerrild Søgaard & Karen la Cour. (2022) The lived experience of uncertainty in everyday life with MS. Disability and Rehabilitation 44:20, pages 5957-5963.
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Maryam Keramat Kar, Lisa Whitehead, Catherine M. Smith, Philippa Seaton & Hossein Mozhdehipanah. (2022) Anticipatory coping: how women deal with the hassles of living with multiple sclerosis. Disability and Rehabilitation 44:3, pages 449-457.
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Elisabeth G Celius, Heidi Thompson, Maija Pontaga, Dawn Langdon, Alice Laroni, Stanca Potra, Trishna Bharadia, David Yeandle, Jane Shanahan, Pieter van Galen, Nektaria Alexandri & Jürg Kesselring. (2021) Disease Progression in Multiple Sclerosis: A Literature Review Exploring Patient Perspectives. Patient Preference and Adherence 15, pages 15-27.
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Eleni Koutsogeorgou, Antonio M. Chiesi & Matilde Leonardi. (2020) Social capital components and social support of persons with multiple sclerosis: a systematic review of the literature from 2000 to 2018. Disability and Rehabilitation 42:24, pages 3437-3449.
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Christianne M. Laing, Clare L. Cooper, Fiona Summers, Louisa Lawrie, Shibeal O’Flaherty & Louise H. Phillips. (2020) The nature of anger in people with multiple sclerosis: a qualitative study. Psychology & Health 35:7, pages 824-837.
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Joby Alex, Lucie Ramjan, Yenna Salamonson & Caleb Ferguson. (2020) Nurses as key advocates of self-care approaches to chronic disease management. Contemporary Nurse 56:2, pages 101-104.
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Christine K. Cowan, Jane M. Pierson & Sandra G. Leggat. (2020) Psychosocial aspects of the lived experience of multiple sclerosis: personal perspectives. Disability and Rehabilitation 42:3, pages 349-359.
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Joshua D. McKeever, Maria T. Schultheis, Tiffanie Sim, Jessica Goykhman, Kristina Patrick, Dawn M. Ehde & Steven Paul Woods. (2019) Selective reminding of prospective memory in Multiple Sclerosis. Neuropsychological Rehabilitation 29:5, pages 675-690.
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Emer O’Loughlin, Susan Hourihan, Jeremy Chataway, E. Diane Playford & Afsane Riazi. (2017) The experience of transitioning from relapsing remitting to secondary progressive multiple sclerosis: views of patients and health professionals. Disability and Rehabilitation 39:18, pages 1821-1828.
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Daniel R. du Plooy & Chrisma Pretorius. (2014) The caregiver experience: a South African perspective on caring for people with multiple sclerosis. Journal of Psychology in Africa 24:4, pages 361-369.
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Kerry Mutch, Abigail Methley, Phil Moore & Anu Jacob. (2014) Life on hold: the experience of living with neuromyelitis optica. Disability and Rehabilitation 36:13, pages 1100-1107.
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Alex Morley, Angela Tod, Mary Cramp & Sue Mawson. (2013) The meaning of spasticity to people with multiple sclerosis: What can health professionals learn?. Disability and Rehabilitation 35:15, pages 1284-1292.
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Anita Salamonsen, Laila Launsø, ToveE. Kruse & SisselH. Eriksen. (2010) Understanding unexpected courses of multiple sclerosis among patients using complementary and alternative medicine: A travel from recipient to explorer. International Journal of Qualitative Studies on Health and Well-being 5:2.
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Frances Twomey & Katie Robinson. (2010) Pilot study of participating in a fatigue management programme for clients with multiple sclerosis. Disability and Rehabilitation 32:10, pages 791-800.
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Articles from other publishers (54)

Robert Simpson, Stephanie Posa, Tania Bruno, Sharon Simpson, Marina B. Wasilewski, Lawrence R. Robinson, Sarah Munce, Mark Bayley & Anthony Feinstein. (2022) Conceptualization, use, and outcomes associated with compassion in the care of people with multiple sclerosis: a scoping review. Journal of Neurology 270:3, pages 1300-1322.
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Shafigh Mehraban, Bahman Bahmani, Soliman Ahmad Boukani, Maryam Toosi, Mina Karami & Edgar Carnero Contentti. (2023) Patients experiences when receiving diagnosis of multiple sclerosis: A qualitative systematic review. Multiple Sclerosis and Related Disorders 69, pages 104473.
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Erin Faraclas, Jeff Lynn, Jeffery D. Lau & Angela Merlo. (2022) Health-Related Quality of Life in people with Multiple Sclerosis: How does this Population Compare to Population-based Norms in Different Health Domains?. Journal of Patient-Reported Outcomes 6:1.
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Chrysoula Baka, Kalliopi Chatira, Evangelos C. Karademas & Konstantinos G. Kafetsios. (2021) Patients’ Perspective on the Psychological Impact of Multiple Sclerosis on Their Life. Illness, Crisis & Loss 30:4, pages 659-673.
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Erin Faraclas, Angela Merlo, Jeff Lynn & Jeffery D. Lau. (2022) Perceived facilitators, needs, and barriers to health related quality of life in people with multiple sclerosis: a qualitative investigation. Journal of Patient-Reported Outcomes 6:1.
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Maciej Wilski, Magdalena Koper, Jarosław Gabryelski, Waldemar Brola & Tomasz Tasiemski. (2022) Mental Health Status of People with Multiple Sclerosis during the COVID-19 Pandemic. Journal of Clinical Medicine 11:3, pages 576.
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Shahla Damanabi, Zeinab Salimzadeh, Leila R. Kalankesh, Sheida Shaafi & Reza Ferdousi. (2022) Exploring Self-management Needs of Persons With Multiple Sclerosis: A Qualitative Study for Mobile Application Development. International Journal of MS Care 24:1, pages 1-7.
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Monica Busse, Rebecca Playle, Julie Latchem-Hastings, Kate Button, Rachel Lowe, Christy Barlow, Barry Lloyd, Andrew Dean-Young, Vincent Poile, Helen Dawes, Freya Davies, Rhian O'Halloran, Emma Tallantyre, Adrian Edwards, Fiona Wood & Fiona Jones. (2022) A web-based life-style, exercise and activity intervention for people with progressive multiple sclerosis: Results of a single-arm feasibility study. Multiple Sclerosis and Related Disorders 57, pages 103388.
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Julie Latchem-Hastings, Elizabeth Randell, Kate Button, Fiona Jones, Rachel Lowe, Helen Dawes, Fiona Wood, Freya Davies, Vincent Poile, Rhian O’Halloran, Barbara Stensland, Emma Tallantyre, Rebecca Playle, Adrian Edwards & Monica Busse. (2021) Lifestyle, exercise and activity package for people living with progressive multiple sclerosis (LEAP-MS): protocol for a single-arm feasibility study. Pilot and Feasibility Studies 7:1.
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Rachel Lowe, Christy Barlow, Barry Lloyd, Julie Latchem-Hastings, Vincent Poile, Charlotte Scoble, Andrew Dean-Young, Kate Button, Rebecca Playle & Monica Busse. (2021) Lifestyle, Exercise and Activity Package for People living with Progressive Multiple Sclerosis (LEAP-MS): adaptions during the COVID-19 pandemic and remote delivery for improved efficiency. Trials 22:1.
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Christopher Meek, Nima G. Moghaddam, Nikos Evangelou, Lloyd L. Oates, Gogem Topcu, Christopher Allen & Roshan das Nair. (2021) Acceptance-based telephone support around the time of transition to secondary progressive multiple sclerosis: A feasibility randomised controlled trial. Journal of Contextual Behavioral Science 21, pages 158-170.
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Mahdieh Mokhberdezfuli, Haleh Ayatollahi & Abdorreza Naser Moghadasi. (2021) A Smartphone-based Application for Self-Management in Multiple Sclerosis. Journal of Healthcare Engineering 2021, pages 1-7.
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Rachael Hunter, Bryoni Parry & Ceri Thomas. (2020) Fears for the future: A qualitative exploration of the experiences of individuals living with multiple sclerosis, and its impact upon the family from the perspective of the person with MS. British Journal of Health Psychology 26:2, pages 464-481.
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Maryam Bidadian, Kazem Rasoolzadeh Tabatabaei, Abdorreza Naser Moghadasi & Fazlollah Ahmadi. (2020) Exploring the Psychological Antecedent Factors of the Transition to Secondary Progressive Multiple Sclerosis: A Qualitative Study. The Neuroscience Journal of Shefaye Khatam 8:4, pages 29-38.
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Eleftherios Anestis, Fiona Eccles, Ian Fletcher, Maddy French & Jane Simpson. (2020) Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors’ and patients’ perspectives. Patient Education and Counseling 103:9, pages 1709-1723.
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Robert Simpson, Sharon Simpson, Nitish Ramparsad, Margaret Lawrence, Jo Booth & Stewart W Mercer. (2019) Mindfulness-based interventions for mental well-being among people with multiple sclerosis: a systematic review and meta-analysis of randomised controlled trials. Journal of Neurology, Neurosurgery & Psychiatry 90:9, pages 1051-1058.
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Therese Burke, Steve Vucic & Joanna Patching. (2019) “Taming the Beast”: Exploring the Lived Experience of Relapsing Remitting Multiple Sclerosis Using a Life History Approach. Research and Theory for Nursing Practice 33:3, pages 229-245.
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Lena Skovgård Petersen & Anne Dichmann Sorknæs. (2019) Patients’ experiences of being diagnosed with multiple sclerosis and their support and guidance needs in the first year of illness. Edorium Journal of Disability and Rehabilitation 5:2, pages 1-10.
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Moira Smith, Bridee Neibling, Gavin Williams, Melanie Birks & Ruth Barker. (2019) A qualitative study of active participation in sport and exercise for individuals with multiple sclerosis. Physiotherapy Research International 24:3.
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Setareh Ghahari, Susan J. Forwell, Melinda J. Suto & Sara Morassaei. (2019) Multiple sclerosis self-management model: Personal and contextual requirements for successful self-management. Patient Education and Counseling 102:5, pages 1013-1020.
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Joanna Blundell Jones, Sue Walsh & Claire Isaac. (2017) The Relational Impact of Multiple Sclerosis: An Integrative Review of the Literature Using a Cognitive Analytic Framework. Journal of Clinical Psychology in Medical Settings 24:3-4, pages 316-340.
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John Costello. (2017) Preserving the independence of people living with multiple sclerosis towards the end of life. International Journal of Palliative Nursing 23:10, pages 474-483.
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Teresa Leahy, Mohammed Elseed & Timothy J. Counihan. (2017) Clinically isolated syndromes or clinically isolated patients? A patient and clinician perspective on the utility of CIS as a diagnosis. Multiple Sclerosis and Related Disorders 17, pages 249-255.
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GJ Melendez-Torres, Peter Auguste, Xavier Armoiry, Hendramoorthy Maheswaran, Rachel Court, Jason Madan, Alan Kan, Stephanie Lin, Carl Counsell, Jacoby Patterson, Jeremy Rodrigues, Olga Ciccarelli, Hannah Fraser & Aileen Clarke. (2017) Clinical effectiveness and cost-effectiveness of beta-interferon and glatiramer acetate for treating multiple sclerosis: systematic review and economic evaluation. Health Technology Assessment 21:52, pages 1-352.
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Yvonne C. Learmonth, Brynn C. Adamson, Julia M. Balto, Chung-yi Chiu, Isabel Molina-Guzman, Marcia Finlayson, Barry J. Riskin & Robert W. Motl. (2017) Multiple sclerosis patients need and want information on exercise promotion from healthcare providers: a qualitative study. Health Expectations 20:4, pages 574-583.
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Alaa M Arafah, Vanessa Bouchard & Nancy E Mayo. (2016) Enrolling and keeping participants in multiple sclerosis self-management interventions: a systematic review and meta-analysis. Clinical Rehabilitation 31:6, pages 809-823.
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Julia Frost, Jane Grose & Nicky Britten. (2016) A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine 21:3, pages 316-336.
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Soundy A. (2017) Determining the use and value of social support in Telerehabiliation Interventions for individuals with Multiple Sclerosis: A narrative synthesis review. Journal of Novel Physiotherapy and Rehabilitation 1:3, pages 120-136.
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A. Soundy & T. Elder. 2017. Nutrition and Lifestyle in Neurological Autoimmune Diseases. Nutrition and Lifestyle in Neurological Autoimmune Diseases 117 125 .
Åsa Audulv, Tanya Packer, Susan Hutchinson, Kerstin S. Roger & George Kephart. (2016) Coping, adapting or self-managing - what is the difference? A concept review based on the neurological literature. Journal of Advanced Nursing 72:11, pages 2629-2643.
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Laura Dennison, Ellen McCloy Smith, Katherine Bradbury & Ian Galea. (2016) How Do People with Multiple Sclerosis Experience Prognostic Uncertainty and Prognosis Communication? A Qualitative Study. PLOS ONE 11:7, pages e0158982.
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Natalia Nowaczyk & Lidia Cierpiałkowska. (2016) Coping with multiple sclerosis from the perspective of Stevan E. Hobfoll's theory of conservation of resources. Postępy Psychiatrii i Neurologii 25:2, pages 111-123.
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Nadine LacroixM. serv. sM. serv. s, Normand BoucherPh.D.Ph.D. & Patrick VilleneuvePh.D.Ph.D.. (2016) Participation sociale et sclérose en plaques : Réalité particulière. Service social 62:2, pages 94.
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Andrew Soundy, Carolyn Roskell, Rachel Adams, Tracey Elder & Helen Dawes. (2016) Understanding Health Care Professional-Patient Interactions in Multiple Sclerosis: A Systematic Review and Thematic Synthesis. Open Journal of Therapy and Rehabilitation 04:04, pages 187-217.
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Andy Soundy, Carolyn Roskell, Tracey Elder, Johnny Collett & Helen Dawes. (2016) The Psychological Processes of Adaptation and Hope in Patients with Multiple Sclerosis: A Thematic Synthesis. Open Journal of Therapy and Rehabilitation 04:01, pages 22-47.
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Abigail M. Methley, Carolyn Chew-Graham, Stephen Campbell & Sudeh Cheraghi-Sohi. (2015) Experiences of UK health-care services for people with Multiple Sclerosis: a systematic narrative review. Health Expectations 18:6, pages 1844-1855.
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Denise Hinton & Susan Kirk. (2015) Paediatric multiple sclerosis: a qualitative study of families’ diagnosis experiences. Archives of Disease in Childhood 100:7, pages 623-629.
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Tanya L. Packer, George Kephart, Setareh Ghahari, Åsa Audulv, Joan Versnel & Grace Warner. (2015) The Patient Activation Measure: a validation study in a neurological population. Quality of Life Research 24:7, pages 1587-1596.
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Z.U. Bhatti, A.Y. Finlay, C.E. Bolton, L. George, J.P. Halcox, S.M. Jones, R.I. Ketchell, R.H. Moore & M.S. Salek. (2014) Chronic disease influences over 40 major life-changing decisions (MLCDs): a qualitative study in dermatology and general medicine. Journal of the European Academy of Dermatology and Venereology 28:10, pages 1344-1355.
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Stig Wenneberg & Ann-Kristin Isaksson. (2014) Living with Multiple Sclerosis: The Impact of Chronic Illness. Nordic Journal of Nursing Research 34:3, pages 23-27.
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Setareh Ghahari, Lana S. Khoshbin & Susan J. Forwell. (2014) The Multiple Sclerosis Self-Management Scale. International Journal of MS Care 16:2, pages 61-67.
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Cynthia L. Murray, Michelle Ploughman, Chelsea Harris, Stephen Hogan, Michelle Murdoch & Mark Stefanelli. (2014) The Liberation Procedure Decision-Making Experience for People With Multiple Sclerosis. Global Qualitative Nursing Research 1, pages 233339361455141.
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Chrisma Pretorius & Ninon Joubert. (2014) The experiences of individuals with Multiple Sclerosis in the Western Cape, South Africa. Health SA Gesondheid 19:1.
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Jacqui Steadman & Chrisma Pretorius. (2014) The impact of an online Facebook support group for people with multiple sclerosis on non-active users. African Journal of Disability 3:1.
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Kaye M Hillsdon, Paula Kersten & Hayden JS Kirk. (2013) A qualitative study exploring patients’ experiences of standard care or cardiac rehabilitation post minor stroke and transient ischaemic attack. Clinical Rehabilitation 27:9, pages 845-853.
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Virginia Salinas Pérez, Petri Rogero Anaya & M. Teresa Labajos Manzanares. (2013) Cómo es la experiencia de los pacientes desde que experimentan síntomas iniciales hasta que se reconocen en el diagnóstico de la esclerosis múltiple: modelo teórico explicativo de la vivencia diagnóstica. Revista Científica de la Sociedad Española de Enfermería Neurológica 37:1, pages 7-18.
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Grace Aubrey & Sara Demain. (2012) Perceptions of group exercise in the management of multiple sclerosis. International Journal of Therapy and Rehabilitation 19:10, pages 557-565.
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Jenny Preston, Simon Haslam & Lynn Lamont. (2012) What Do People with Multiple Sclerosis Want from an Occupational Therapy Service?. British Journal of Occupational Therapy 75:6, pages 264-270.
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Michaela CoenenBirgit Basedow-Rajwich, Nicolaus König, Jürg Kesselring & Alarcos Cieza. (2011) Functioning and disability in multiple sclerosis from the patient perspective. Chronic Illness 7:4, pages 291-310.
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Eva Månsson Lexell, Susanne Iwarsson & Maria Larsson Lund. (2010) Occupational Adaptation in People with Multiple Sclerosis. OTJR: Occupation, Participation and Health 31:3, pages 127-134.
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ZU Bhatti, MS Salek & AY Finlay. (2011) Chronic diseases influence major life changing decisions: a new domain in quality of life research. Journal of the Royal Society of Medicine 104:6, pages 241-250.
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Laura DennisonLucy Yardley, Angela Devereux & Rona Moss-Morris. (2010) Experiences of adjusting to early stage Multiple Sclerosis. Journal of Health Psychology 16:3, pages 478-488.
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