Multiple sclerosis (MS) is a disease that affects the everyday lives of people with MS and their partners.
Purpose
The purpose of this study was to explore the impact of MS on the lives of two couples living with this disease and their coping strategies.
Methods
Three semi-structured interviews with each couple were completed. Partners were interviewed together as a couple and separately.
Results
Two major themes emerged from the analysis: increasing awareness of change and use of coping strategies. Participants expressed concerns stemming from the progression of MS and changes related to this progression over time. They discussed several coping strategies.
Practice Implications
These findings offer occupational therapists guidance with their treatment focus in clinical practice and suggest topics for further qualitative research on couples living with MS.
AronsonK. J. (1996). Quality of life among persons with multiple sclerosis and their caregivers.Neurology, 48, 74–80.
2.
AronsonK. J., CleghornG., & GoldenbergE. (1996). Assistance arrangements and use of services among persons with multiple sclerosis and their caregivers.Disability and Rehabilitation, 18, 354–361.
3.
Batt-LeibaM. I., HillsG. A., JohnsonsP. M., & BlochE. (1998). Implications of coping strategies for spousal caregivers of elders with dementia.Topics in Geriatric Rehabilitation, 14, 54–62.
4.
BaumgartenM. (1989). The health of persons giving care to the demented elderly: a critical review of the literature.Journal of Clinical Epidemiology, 42, 1127–1148.
5.
BermanW. H., & ZbrowskiL. L. (1990, August). Assessing the process of marital adaptation: the marital coping inventory. Paper presented at the Annual Convention of the American Psychological Association, Boston, MA.
6.
BoeijeH. R., DuijnsteeM. S. H., & GrypdonckM. J. F. (2003). Continuation of caregiving among partners who give total care to spouses with multiple sclerosis.Health and Social Care in the Community, 11, 242–252.
7.
BordenW., & BerlinS. (1990). Gender, coping, and psychological well-being in spouses of older adults with chronic dementia.American Journal of Orthopsychiatry, 60, 603–610.
8.
CarterR. E. & CarterC. A. (1994). Marital adjustment and effects of illness in married pairs with one or both spouses chronically ill.The American Journal of Family Therapy, 22, 315–326.
9.
ChipchaseS. Y., & LincolnN. B. (2001). Factors associated with carer strain in carers of people with multiple sclerosis.Disability and Rehabilitation, 23, 768–776.
10.
CockerillR., & WarrenS. (1990). Care for caregivers: the needs of family members of MS patients.Journal of Rehabilitation, 56, 41–44.
11.
DesRosierM. B., CatanzaroM., & PillerJ. (1992). Living with chronic illness: social support and the well spouse perspective.Rehabilitation Nursing, 17, 87–91.
12.
GulickE. E. (1994). Social support among persons with multiple sclerosis.Nursing and Health, 17, 195–206.
13.
HakimE. A., BakheitA. M. O., BryantT. N., RobertsM. W. H., McIntosh-MichaelisS. A., SpackmanA. J., MartinJ. P., & McLellanD. L. (2000). The social impact of multiple sclerosis - a study of 305 patients and their relatives.Disability and Rehabilitation, 22, 288–293.
14.
HookerK., FrazierL. D., & MonahanD. J. (1994). Personality and coping among caregivers of spouses with dementia.The Gerontologist, 34, 386–392.
15.
KramerB. J. (1993). Expanding the conceptualization of caregiver coping: The importance of relationship-focused coping strategies.Family Relations, 42, 383–391.
MarksS. F. (1990). Nursing assessment of positive adjustment for individuals with multiple sclerosis.Rehabilitation Nurse, 15, 147.
18.
McKeownL. P., Porter-ArmstrongA. P., & BaxterG. D. (2003). The needs and experiences of caregivers of individuals with multiple sclerosis: A systematic review.Clinical Rehabilitation, 17, 234–248.
19.
NolanM. R., GrantG., & EllisN. C. (1990). Stress is in the eye of the beholder: Reconceptualizing the measurement of carer burden.Journal of Advanced Nursing, 15, 544–555.
20.
NovakM., & GuestC. I. (1989). Application of a multidimensional caregiver burden inventory.Gerontologist, 29, 798–803.
21.
O'BrienM. T. (1993a). Multiple sclerosis: Health-promoting behaviors of spousal caregivers.Journal of Neuroscience Nursing, 25, 105–112.
22.
O'BrienM. T. (1993b). Multiple sclerosis: stressors and coping strategies in spousal caregivers.Journal of Community Health Nursing, 10, 123–135.
23.
O'BrienR. A., WinemanN. M., & NealonN. R. (1995). Correlates of the caregiving process in multiple sclerosis.Scholarly Inquiry for Nursing Practice: An International Journal, 9, 323–33.
24.
PakenhamK. I. (1998). Couple coping and adjustment to multiple sclerosis in care receiver-carer dyads.Family Relations, 47, 269–282.
25.
RevensenT. A., & MajerovitzS. D. (1991). The effects of chronic illness of the spouse: Social resources as stress buffers.Arthritis Care & Research, 4, 63–72.
26.
WeissR. S. (1994). Learning from strangers: the art and method of qualitative interview studies.New York: Free Press.
27.
WinslowB., & O'BrienR. (1992). Use of formal community resources by spouse caregivers of chronically ill adults.Public Health Nursing, 9, 128–132.
28.
WollinJ., & SatoA. (2001). An international comparison of caregiver burden in multiple sclerosis.Australasian Journal of Neurosciences, 14, 21–25.
29.
ZeldowP. B., & PavlouM. (1994). Physical disability, life stress & psychological adjustment in multiple sclerosis.Journal of Nervous Mental Disease, 172, 80–84.
