Open Access Open Access  Restricted Access Subscription Access

Patients’, carers’ and providers’ experiences and requirements for support in self-management of multiple sclerosis: a qualitative study

Francesca Deibel, Michelle Edwards, Adrian Edwards

Abstract


Background: Self-management is a process increasingly promoted for the management of long term conditions, both for ethical reasons of enhancing autonomy and for likely cost-effectiveness, but the nature and scope of self-management strategies are currently highly variable.

Objective: To identify patients’, carers’ and clinicians’ current experiences of self-management in multiple sclerosis (MS) and their recommendations for the development of a future MS-specific self-management intervention

Methods: Qualitative study using focus groups and semi-structured one-to-one interviews with a purposive sample. Three focus groups were held with 25 patients with moderate to advanced multiple sclerosis and 4 carers. Ten clinicians were interviewed. Data underwent thematic analysis.

Results: Participants perceived multiple aspects of MS to be amenable to self-management, but identified a current lack of service provision to support their abilities to self-manage. Participants felt that to address both the physical and psychosocial challenges posed by MS required better information provision, a strong relationship with healthcare professionals and a toolkit of self-management skills. Participants expressed concern at the lack of consideration currently given to carers, which should be addressed in future provision.

Conclusion: The diverse experiences of patients living with MS warrant a multidisciplinary, flexible and proactive approach to improve their self-management capabilities, acknowledging both patients’ and carers’ unmet needs. The findings can be used to guide the development of future self-management interventions specific to individuals with multiple sclerosis.

Keywords


Long term conditions, Multiple Sclerosis, person-centered healthcare, qualitative, self-care, self-management

Full Text:

PDF

References


Yach, D., Hawkes, C., Gould, C.L. & Hofman, K.J. (2004). The global burden of chronic diseases: overcoming impediments to prevention and control. Journal of the American Medical Association 291, 2616-2622.

Bodenheimer, T., Lorig, K., Holman, H. & Grumbach, K. (2002). Patient self-management of chronic disease in primary care. Journal of the American Medical Association 288, 2469-2475.

Barlow, J., Wright, C., Sheasby, J., Turner, A. & Hainsworth, J. (2002). Self-management approaches for people with chronic conditions: a review. Patient Education and Counseling 48, 177-187.

Levin-Zamir, D. & Peterburg, Y. (2001). Health literacy in health systems: perspectives on patient self-management in Israel. Health Promotion International 16, 87-94.

Bishop, M., Frain, M.P. & Tschopp, M.K. (2008). Self-Management, Perceived Control, and Subjective Quality of Life in Multiple Sclerosis An Exploratory Study. Rehabilitation Counseling Bulletin 52, 45-56.

Chodosh, J., Morton, S.C., Mojica, W., Maglione, M., Suttorp, M.J., Hilton, L., Rhodes, S. & Shekelle, P. (2005). Meta-analysis: Chronic disease self-management programs for older adults. Annals of Internal Medicine 143, 427-438.

Lorig, K.R. & Holman, H.R. (2003). Self-management education: History, definition, outcomes, and mechanisms. Annals of Behavioral Medicine 26, 1-7.

Kravitz, R.L., Hays, R.D., Sherbourne, C.D., Dimatteo, M.R., Rogers, W.H., Ordway, L. & Greenfield, S. (1993). Recall of Recommendations and Adherence to Advice among Patients with Chronic Medical Conditions. Archives of Internal Medicine 153, 1869-1878.

Kripalani, S., Yao, X.M. & Haynes, R.B. (2007). Interventions to enhance medication adherence in chronic medical conditions - A systematic review. Archives of Internal Medicine 167, 540-550.

Grandy, S., Chapman, R.H., Fox, K.M. & SHIELD Study Group. (2008). Quality of life and depression of people living with type 2 diabetes mellitus and those at low and high risk for type 2 diabetes: findings from the Study to Help Improve Early evaluation and management of risk factors Leading to Diabetes (SHIELD). International Journal of Clinical Practice 62, 562-568.

Goldney, R.D., Ruffin, R., Fisher, L.J. & Wilson, D.H. (2003). Asthma symptoms associated with depression and lower quality of life: a population survey. Medical Journal of Australia 178, 437-441.

Pugh-Clarke, K., Naish, P.F. & Mercer, T.M. (2006). Quality of life in chronic kidney disease. Journal of Renal Care 32, 167-171.

Newman, S., Steed, L. & Mulligan, K. (2004). Self-management interventions for chronic illness. Lancet 364, 1523-1537.

Jones, C.A., Pohar, S.L., Warren, S., Turpin, K.V. & Warren, K.G. (2008). The burden of multiple sclerosis: a community health survey. Health and Quality of Life Outcomes 6, 1.

Fitzner, D. & Simons, M. (2010). Chronic progressive multiple sclerosis - pathogenesis of neurodegeneration and therapeutic strategies. Current Neuropharmacology 8, 305-315.

Povey, R., Dowie, R. & Prett, G. (1986). Learning to Live with Multiple Sclerosis. London: Sheldon Press.

Stockl, K.M., Shin, J.S., Gong, S., Harada, A.S.M., Solow, B.K. & Lew, H.C. (2010). Improving Patient Self-Management of Multiple Sclerosis Through a Disease Therapy Management Program. American Journal of Managed Care 16, 139-144.

McAuley, E., Motl, R.W., Morris, K.S., Hu, L., Doerksen, S.E., Elavsky, S. & Konopack, J.F. (2007). Enhancing physical activity adherence and well-being in multiple sclerosis: a randomised controlled trial. Multiple Sclerosis 13, 652-659.

Mathiowetz, V., Matuska, K.M. & Murphy, M.E. (2001). Efficacy of an energy conservation course for persons with multiple sclerosis. Archives of Physical Medicine and Rehabilitation 82, 449-456.

Barlow, J., Turner, A., Edwards, R. & Gilchrist, M. (2009). A randomised controlled trial of lay-led self-management for people with multiple sclerosis. Patient Education and Counseling 77, 81-89.

O'Hara, L., Cadbury, H., De, S.L. & Ide, L. (2002). Evaluation of the effectiveness of professionally guided self-care for people with multiple sclerosis living in the community: a randomized controlled trial. Clinical Rehabilitation 16, 119-128.

Miller, D.M., Moore, S.M., Fox, R.J., Atreja, A., Fu, A.Z., Lee, J.C., Saupe, W., Stadtler, M., Chakraborty, S., Harris, C.M. & Rudick, R.A. (2011). Web-based self-management for patients with multiple sclerosis: a practical, randomized trial. Telemedicine Journal and E-health 17, 5-13.

Golla, H., Galushko, M., Pfaff, H. & Voltz, R. (2012). Unmet needs of severely affected multiple sclerosis patients: the health professionals' view. Palliative Medicine 26, 139-151.

Freeman, J.A. & Thompson, A.J. (2000). Community services in multiple sclerosis: still a matter of chance. Journal of Neurology, Neurosurgurgery & Psychiatry 69, 728-732.

Edmonds, P., Vivat, B., Burman, R., Silber, E. & Higginson, I.J. (2007). 'Fighting for everything': service experiences of people severely affected by multiple sclerosis. Multiple Sclerosis 13, 660-667.

Fraser, R., Johnson, E., Ehde, E. & Bishop, M. (2009). Patient Self-Management in Multiple Sclerosis Washington: The Consortium of Multiple Sclerosis Centers.

Golla, H., Galushko, M., Pfaff, H. & Voltz, R. (2012). Unmet needs of severely affected multiple sclerosis patients: The health professionals' view. Palliative Medicine 26, 139-151.

McKeown, L.P., Porter-Armstrong, A.P. & Baxter, G.D. (2003). The needs and experiences of caregivers of individuals with multiple sclerosis: a systematic review. Clinical Rehabilitation 17, 234-248.

Chipchase, S.Y. & Lincoln, N.B. (2001). Factors associated with carer strain in carers of people with multiple sclerosis. Disability and Rehabilitation 23, 768-776.

Forbes, A., While, A. & Taylor, M. (2007). What people with multiple sclerosis perceive to be important to meeting their needs. Journal of Advanced Nursing 58, 11-22.

Kitzinger, J. (1995). Qualitative research. Introducing focus groups. British Medical Journal 311, 299-302.

Walch, S.E., Roetzer, L.M. & Minnett, T.A. (2006). Support group participation among persons with HIV: Demographic characteristics and perceived barriers. Aids Care 18, 284-289.

Karlin, N.J., Bell, P.A., Noah, J.L., Martichuski, D.K. & Knight, B.L. (1999). Assessing Alzheimer's support group particpation: A retrospective follow-up. American Journal of Alzheimer's Disease and Other Dementias 14, 326-333.

Gill, P., Stewart, K., Treasure, E. & Chadwick, B. (2008). Methods of data collection in qualitative research: interviews and focus groups. British Dental Journal 204, 291-295.

Kurtzke, J.F. (1983). Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurology 33, 1444-1452.

Ennis, M., Thain, J., Boggild, M., Baker, G.A. & Young, C.A. (2006). A randomized controlled trial of a health promotion education program for people with multiple sclerosis. Clinical Rehabilitation 20, 783-792.

Barlow, J., Turner, A., Edwards, R. & Gilchrist, M. (2009). A randomised controlled trial of lay-led self-management for people with multiple sclerosis. Patient Education and Counseling 77, 81-89.

Bombardier, C.H., Cunniffe, M., Wadhwani, R., Gibbons, L.E., Blake, K.D. & Kraft, G.H. (2008). The efficacy of telephone counseling for health promotion in people with multiple sclerosis: a randomized controlled trial. Archives of Physical Medicine and Rehabilitation 89, 1849-1856.

Finlayson, M. & Holberg, C. (2007). Evaluation of a teleconference-delivered energy conservation education program for people with multiple sclerosis. Canadian Journal of Occupational Therapy 74, 337-347.

Kopke, S., Kasper, J., Muhlhauser, I., Nubling, M. & Heesen, C. (2009). Patient education program to enhance decision autonomy in multiple sclerosis relapse management: a randomized-controlled trial. Multiple Sclerosis 15, 96-104.

Kos, D., Duportail, M., D'Hooghe, M., Nagels, G. & Kerckhofs, E. (2007). Multidisciplinary fatigue management program in multiple sclerosis: a randomized clinical trial. Multiple Sclerosis 13, 996-1003.

Mathiowetz, V., Matuska, K.M. & Murphy, M.E. (2001). Efficacy of an energy conservation course for persons with multiple sclerosis. Archives of Physical Medicine and Rehabilitation 82, 449-456.

Shevil, E. & Finlayson, M. (2009). Process evaluation of a self-management cognitive program for persons with multiple sclerosis. Patient Education and Counseling 76, 77-83.

Thomas, S., Thomas, P.W., Nock, A., Slingsby, V., Galvin, K., Baker, R., Moffat, N. & Hillier, C. (2010). Development and preliminary evaluation of a cognitive behavioural approach to fatigue management in people with multiple sclerosis. Patient Education and Counseling 78, 240-249.

Braun, V. & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology 3, 77-101.

Nutbeam, D. (2000). Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International 15, 259-267.

Cutajar, R., Ferriani, E., Scandellari, C., Sabattini, L., Trocino, C., Marchello, L.P. & Stecchi, S. (2000). Cognitive function and quality of life in multiple sclerosis patients. Journal of Neurovirology 6, (Supplement 2) S186-S190.

Gerbauld, L., Deffond, D., Mulliez, A., Benausse, F., Vernay, D. & Clavelou, P. (2006). Cognitive impairment and quality of life in multiple sclerosis patients. Revue Neurologique 162, 970-979.

Benito-Leon, J., Morales, J.M. & Rivera-Navarro, J. (2002). Health-related quality of life and its relationship to cognitive and emotional functioning in multiple sclerosis patients. European Journal of Neurology 9, 497-502.

Kostic, J., Drulovic, J., Stojsavljevic, N., Tepavcevic, D.K., Pekmezovic, T., Mesaros, S., Dujmovic Basuroski, I. and Insitute of Neurology, Belgrade, RS. (2009). The impact of cognitive impairment on the quality of life in patients with multiple sclerosis. Multiple Sclererosis 15, S226-S227.

Hakim, E.A., Bakheit, A.M.O., Bryant, T.N., Roberts, M.W.H., McIntosh-Michaelis, S.A., Spackman, A.J., Martin, J.P. & McLellan, D.L. (2000). The social impact of multiple sclerosis - a study of 305 patients and their relatives. Disability and Rehabilitation 22, 288-293.

Edmonds, P., Vivat, B., Burman, R., Silber, E. & Higginson, I.J. (2007). Loss and change: experiences of people severely affected by multiple sclerosis. Palliative Medicine 21, 101-107.

Malcomson, K.S., Lowe-Strong, A.S. & Dunwoody, L. (2008). What can we learn from the personal insights of individuals living and coping with Multiple sclerosis? Disability and Rehabilitation 30, 662-674.

Solari, A., Martinelli, V., Trojano, M., Lugaresi, A., Granella, F., Giordano, A., Messmer Uccelli, M., D'Alessandro, R., Pucci, E., Confalonieri, P., Borreani, C. & SIMS-Trial Group. (2010). An information aid for newly diagnosed multiple sclerosis patients improves disease knowledge and satisfaction with care. Multiple Sclerosis 16, 1393-1405.

Wollin, J., Dale, H., Spencer, N. & Walsh, A. (2000). What people with newly diagnosed MS (and their families and friends) need to know. International Journal of MS Care 2 (3) 29-58.

Thorne, S., Con, A., McGuinness, L., McPherson, G. & Harris, S.R. (2004). Health care communication issues in multiple sclerosis: an interpretive description. Qualitative Health Research 14, 5-22.

Forbes, A., While. A. & Mathes, L. (2007). Informal carer activities, carer burden and health status in multiple sclerosis. Clinical Rehabilitation 21, 563-575.

National Institute for Health and Clinical Excellence. (2003). Multiple Sclerosis. Management of multiple sclerosis in primary and secondary care. London: National Institute for Health and Clinical Excellence.

Multiple Sclerosis Society. (2012). MS Society: About Us.

Dewalt, D.A., Berkman, N.D., Sheridan, S., Lohr, K.N. & Pignone, M.P. (2004). Literacy and health outcomes: a systematic review of the literature. Journal of General Internal Medicine 19, 1228-1239.

Coleman, M.T. & Newton, K.S. (2005). Supporting self-management in patients with chronic illness. American Family Physician 72, 1503-1510.

Nutbeam, D. (2008). The evolving concept of health literacy. Social Science & Medicine 67, 2072-2078.

Miles, A. & Mezzich, J.E. (2012). Person-centered medicine: addressing chronic illness and promoting future health. International Journal of Person Centered Medicine 2 (2) 149-152.




DOI: http://dx.doi.org/10.5750/ejpch.v1i2.687

Refbacks

  • There are currently no refbacks.