Journal of Child and Family Studies

, Volume 27, Issue 5, pp 1640–1649 | Cite as

Managing Fatigue in Parents with Multiple Sclerosis

  • Darbi Haynes-LawrenceEmail author
  • Adam R. West
Original Paper


The purpose of this study was to examine fatigue and how it affects the lives of families with Multiple Sclerosis (MS). The overarching goal was to determine ways to better support parents who are experiencing MS fatigue. Qualitative surveys were used to collect data from 181 participants on the impacts of MS and parenting over a 3-month time period. Findings include three themes: (1) Description of Fatigue, focused on the intense definition and description of how fatigue is experienced by participants; (2) Fatigue Impacts Parenting, described the views of parental challenges; and (3) Managing Fatigue, centered on the methods used by participants to control their fatigue. Discussion of findings, conclusions, and recommendations for practice for social workers and future studies are presented.


Fatigue Multiple sclerosis Spoon theory Parenting Chronic illness 


Author Contributions

D.H.L. designed and executed the study, assisted with data analysis and wrote the paper. A.R.W. collaborated with the design, data analysis, and writing of the study.


This study was funded by a grant from the Multiple Sclerosis Foundation (#598345).

Compliance with Ethical Standards

Conflict of Interest

The authors declare that they have no conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of Western Kentucky University and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.


  1. Asano, M., & Finlayson, M. L. (2014). Meta-analysis of three different types of fatigue management interventions for people with multiple sclerosis: exercise, education, and medication. Multiple Sclerosis International, 2014, 1–12. CrossRefGoogle Scholar
  2. Blikman, L. J., Huisstede, B. M., Kooijmans, H., Stam, H. J., Bussmann, J. B., & van Meeteren, J. (2013). Effectiveness of energy conservation treatment in reducing fatigue in multiple sclerosis: a systematic review and meta-analysis. Archives of Physical Medicine and Rehabilitation, 94, 1360–1376. Scholar
  3. Bogdan, R. C., & Biklen, S. K. (1998). Qualitative research in education: an introduction to theory and methods (3rd ed.). Needham Heights, MA: Allyn & Bacon.Google Scholar
  4. Bradley, T. J., & Cherin, R. D. (2010). Fatigue in multiple sclerosis: mechanisms, evaluation, and treatment. Sleep, 33(8), 1061–1067.CrossRefGoogle Scholar
  5. Bradley, T. J., Cherin, R. D., & Segal, B. M. (2012). Fatigue, tiredness, lack of energy, and sleepiness in multiple sclerosis patients referred for clinical polysomnography. Multiple Sclerosis International, 2012.
  6. Cameron, M. H., Peterson, V., Boudreau, E. A., Downs, A., Lovera, J., Kim, E., McMillan, G. P., Turner, A. P., Haselkorn, J. K., & Bourdette, D. (2014). Fatigue is associated with poor sleep in people with multiple sclerosis and cognitive impairment. Multiple Sclerosis International, 2014, 1–5.
  7. Cardoff, E., Murray, S. A., & Kendall, M. (2015). Methodological developments in qualitative longitudinal research: The advantages and challenges of regular telephone contact with participants in a qualitative longitudinal interview study. BioMed Central Research Notes, 8(142), 1–10. Scholar
  8. Castro-Sanchez, A. M., Mataran-Penarrocha, G. A., Lara-Palomo, I., Saavadra-Hernandez, M., Arroyo-Morales, M., & Moreno-Lorenzo, C. (2012). Hydrotherapy for the treatment of pain in people with multiple sclerosis: a randomized controlled trial. Evidence Based Complementary and Alternative Medicine, 2012.
  9. Charvet, L., Serafin, D., & Krupp, L. B. (2014). Fatigue in multiple sclerosis. Biomedicine, Health & Behavior, 2(1), 3–13. Scholar
  10. Claros-Salinas, D., Dittmer, N., Neumann, M., Sehle, A., Spiteri, S., Willmes, K., Schoenfeld, M. A., & Dettmers, C. (2013). Induction of cognitive fatigue in MS patients through cognitive and physical load. Neuropsychological Rehabilitation, 23(2), 182–201.
  11. Creswell, J. W., & Miller, D. L. (2000). Determining validity in qualitative inquiry. Theory into Practice, 39(3), 124–130.CrossRefGoogle Scholar
  12. Da Silva, A. M., Cavaco, S., Moreira, I., Bettencourt, A., Santos, E., Pinto, C., & Montalban, X. (2015). Cognitive reserve in multiple sclerosis: protective effects of education. Multiple Sclerosis Journal, 21(10), 1312–1321. Scholar
  13. Elbers, R. G., Rietberg, M. B., van Wegen, E. H., Verhoef, J., Kramer, S., Terwee, C. B., & Kwakkel, G. (2012). Self-report fatigue questionnaires in multiple sclerosis, Parkinson’s disease and stroke: a systematic review of measurement properties. Quality of Life Research, 21(6), 925–944. Scholar
  14. Multiple Sclerosis Foundation Medical Advisory Board (2009). Fighting fatigue. Scholar
  15. Garg, H., Bush, S., & Gappmaier, E. (2016). Associations between fatigue and disability, functional mobility, depression, and quality of life in people with multiple sclerosis. International Journal of MS Care, 18(2), 71–77. Scholar
  16. Harrington, M. (2012). Neurobiological studies of fatigue. Progress in Neurobiology, 99(2), 93–105. Scholar
  17. Haynes-Lawrence, D. J. (2014). Supporting families experiencing chronic illness. Childcare Exchange, 37(3), 90–93.Google Scholar
  18. Holberg, C., & Finlayson, M. (2007). Factors influencing the use of energy conservationstrategies by persons with multiple sclerosis. American Journal of Occupational Therapy, 61(1), 96–107.CrossRefPubMedGoogle Scholar
  19. Holland, J., Thomson, R., & Henderson, S. (2006). Qualitative longitudinal research: a discussion paper. Families and Social Capital ESRC Research Group, 21, 1–60.Google Scholar
  20. Khan, F., Amatya, B., & Galea, M. (2014). Management of fatigue in persons with multiple sclerosis. Frontiers in Neurology, 5(177), 1–15. Scholar
  21. King, M. (1995). Fatigue: a medical overview shows the many aspects of this problem. Inside MS, 13(3), 4–6.Google Scholar
  22. Koch, M. W., Patten, S., Berzins, S., Zhornitsky, S., Greenfield, J., Wall, W., & Metz, L. M. (2015). Depression in multiple sclerosis: a long-term longitudinal study. Multiple Sclerosis Journal, 21(1), 76–83. Scholar
  23. Kos, D., Kerckhofs, E., Nagels, G., D’hooghe, B., & Ilsbroukx, S. (2008). Origin of fatigue in multiple sclerosis: review of the literature. The American Society of Neurorehabilitation, 22, 91–100. Scholar
  24. Krupp, L. (2006). Editorial. Multiple Sclerosis, 12(4), 367–368.CrossRefPubMedGoogle Scholar
  25. LeCompte, M. D. (2000). Analyzing qualitative data. Theory into Practice, 39(3), 146–155.CrossRefGoogle Scholar
  26. Lewis, J. (2009). Redefining qualitative methods: believability in the fifth moment. International Journal of Qualitative Methods, 8(2), 1–14.CrossRefGoogle Scholar
  27. Lysandropoulus, A. P., & Havrdova, E. (2015). ‘Hidden’ factors influencing quality of life in patients with multiple sclerosis. European Journal of Neurology, 22(2), 28–33. Scholar
  28. Manconi, M., Fabrrini, M., Bonanni, E., Filippi, M., Rocca, M., Murri, L., & Ferini-Strambi, L. (2007). High prevalence of restless legs syndrome in multiple sclerosis. European Journal of Neurology, 14, 534–539. Scholar
  29. Marshall, C., & Rossman, G. B. (2006). Designing qualitative research (4th ed.). Thousand Oaks, CA: Sage Publications.Google Scholar
  30. Mollaoglu, M., & Üstün, E. (2009). Fatigue in multiple sclerosis patients. Journal of Clinical Nursing, 18, 1231–1238.CrossRefPubMedGoogle Scholar
  31. Morrow, S. A., Rosehart, H., & Johnson, A. M. (2015). Diagnosis and quantification of cognitive fatigue in multiple sclerosis. Cognitive & Behavioral Neurology, 28(1), 27–32.CrossRefGoogle Scholar
  32. Neutens, J. J., & Rubinson, L. (2014). Research techniques for the health sciences (5th ed.). San Francisco, CA: Pearson Education.Google Scholar
  33. Paturel, A. (2009). Hitting the mattress with MS. Neurology Now, 5(1), 24–28.CrossRefGoogle Scholar
  34. Roehrs, T. G., & Karst, G. M. (2004). Effects of an aquatics exercise program on quality of life measures for individuals with progressive multiple sclerosis. Journal of Neurologic Physical Therapy, 28(2), 63–71. Scholar
  35. Rubin, H. J., & Rubin, I. S. (2005). Qualitative interviewing: the art of hearing data (2nd ed.). Thousand Oaks, CA: Sage.CrossRefGoogle Scholar
  36. Rumrill, P. D. (2009). Multiple sclerosis: medical and psychosocial aspects, etiology, incidence and prevalence. Journal of Vocational Rehabilitation, 31, 75–82. Scholar
  37. Sauter, C., Zebenholzer, K., Hisakawa, J., Zeitlhofer, J., & Vass, K. (2008). A longitudinal study on effects of a six-week course for energy conservation for multiple sclerosis patients. Multiple Sclerosis, 14, 500–505. Scholar
  38. Schwid, S. R., Covington, M., Segal, B. M., & Goodman, A. D. (2002). Fatigue in multiple sclerosis: current understanding and future directions. Journal of Rehabilitation Research and Development, 39(2), 211–224.PubMedGoogle Scholar
  39. Schwid, S. R., Petrie, M. D., Murray, R., Leitch, J., Bowen, J., & Alquist, A., NASA/MS Cooling Study Group. (2003). A randomized controlled study of the acute and chronic effects of cooling therapy for MS. Neurology, 60(12), 1955–1960.CrossRefPubMedGoogle Scholar
  40. Sumowski, J. F., Rocca, M. A., Leavitt, V. M., Dackovic, J., Mesaros, S., Drulovic, J., Filippi, M. (2014). Brain reserve and cognitive reserve protect against cognitive decline over 4.5 years in MS. American Academy of Neurology, 82(20), 1776–1783.
  41. Sumowski, J. F., Rocca, M. A., Leavitt, V. M., Riccitelli, G., Comi, G., DeLuca, J., & Filippi, M. (2013). Brain reserve and cognitive reserve in multiple sclerosis: what you’ve got and how you use it. American Academy of Neurology, 80(24), 2186–2193. Scholar
  42. Walker, L. A. S., Berard, J. A., Berrigan, L. I., Rees, L. M., & Freedman, M. S. (2012). Detecting cognitive fatigue in multiple sclerosis: method matters. Journal of the Neurological Sciences, 316, 86–92. Scholar
  43. White, C. P., White, M. B., & Fox, M. A. (2009). Maternal fatigue and its relationship to the caregiving environment. Families, Systems, & Health, 27(4), 325–345. Scholar
  44. Wood, B., van der Mei, I. A. F., Ponsonby, A. L., Pittas, F., Quinn, S., Dwyer, T., Lucas, R. M., & Taylor, B. V. (2013). Prevalence and concurrence of anxiety, depression and fatigue over time in multiple sclerosis. Multiple Sclerosis Journal, 19(2), 217–224. Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Child & Family StudiesWestern Kentucky UniversityBowling GreenUSA
  2. 2.Family StudiesWestern Kentucky UniversityBowling GreenUSA

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