A grounded theory analysis of the occupational impact of caring for a partner who has multiple sclerosis

Journal of Occupational Science

Volumn 13, Issue 2-3, 2006, Pages 188-197

  Heward, Kate ^a   Molineux, Matthew ^a   Gough, Brendan ^b  

^a LEEDS METROPOLITAN UNIVERSITY   (United Kingdom)

^b UNIVERSITY OF LEEDS   (United Kingdom)

Author keywords

Caregiving; Carers; Multiple sclerosis; Occupation

Indexed keywords

EID: 33751580855     PISSN: 14427591     EISSN: 21581576     Source Type: Journal    
DOI: 10.1080/14427591.2006.9726515     Document Type: Article

References (61)

1. Adams, J., Hayes, J., & Hopson, B. (1976). Transition: Understanding and managing personal change. London: Martin Robertson.
2. Aronson, K., Goldenberg, E., & Cleghom, G. (1996). Sociodemographic characteristics and health status of persons with multiple sclerosis and their caregivers. Multiple Sclerosis Management, 3(1), 6-15.
3. Bartos, M., & McDonald, K. (2000). HIV as identity, experience or career. AIDS Care 72(3), 299-306.
4. Belgrave, L., Zablotsky, D., & Guadagno, M. (2002). How do we talk to each other? Writing qualitative research for quantitative readers. Qualitative Health Research, 72(10), 1427-1439.
5. Bogdan, R. C., & Bilken, S. K. (1992). Qualitative research for education: An introduction to theory and methods. Boston: Allyn & Bacon.
6. Buljevac, D., Hop, C. J., Reedeker, A. C., Janssens, J. W., van der Merche, F. G. A., van Doom, P. A., & Hintzen, R. Q. (2003). Self reported stressful life events and exacerbations in multiple sclerosis. British Medical Journal, 327, 646-651.
7. Charmaz, K. (1990). Grounded theory. In J. A. Smith, R. Harre & L. Van Langenhove (Eds.), Rethinking methods in psychology (pp. 27-49). London: Sage.
8. Cheung, J., & Hocking, P. (2004). The experience of spousal carers of people with multiple sclerosis. Qualitative Health Research, 74(2), 153-166.
9. Chipchase, S. Y., & Lincoln, N. B. (2001). Factors associated with carer strain in carers of people with multiple sclerosis. Disability and Rehabilitation, 25(17), 766-776.
10. Clark, F. (1993). Occupation embedded in a real life: Interweaving occupational science and occupational therapy. American Journal of Occupational Therapy, 47(12), 1067-1078.
11. Cockerill, R., & Warren, S. (1990). Care for caregivers: The needs of family members of multiple sclerosis patients. Journal of Rehabilitation, January/February/March, 41-44.
12. Colosimo, C., Millefiorini, E., Grasso, M. G., Vinci, F., Fiorelli, M., Koudriavtseva, T., & Pozzilli, C. (1995). Fatigue in multiple sclerosis associated with specific clinical features. Acta Neurology Scandinavia, 92, 353-355.
13. Creswell, J. (1998). Qualitative inquiry and research design. London: Sage.
14. Denzin, N. K., & Lincoln, Y. S. (Ed.). (1994). Handbook of qualitative research. London: Sage.
15. Department of Health. (1999). Caring about carers: A national strategy for carers. Retrieved 9th August 2006 from http://www.carers.gov.uk from Publications, Policy and Guidance.
16. Department of Health. (2000a). Carers and Disabled Children Act. Retrieved 9th August from http://www.carers.gov.uk from Closed Consultations.
17. Department of Health. (2000b). National Health Service framework for older people. Retrieved 9th August 2006 from http://www.doh.gov.uk from Publications, Policy and Guidance.
18. Department of Health. (2002). The NHS plan. Retrieved 9th August 2006 from http://www.doh.gov.uk from Organisation, Policy and Modernisation.
19. Department of Health. (2005). The National Service framework for long-term conditions. Retrieved 9th August 2006 from http://www.doh.gov.uk from Policy and Guidance in Health and Social care Topics, Long Term Conditions.
20. Esgate, E. (1995). Multiple sclerosis in the community: A selective study. British Journal of Occupational Therapy, 58(2), 65-68.
21. Finlay, L. (2003). The intertwining of body, self and world: A phenomenological study of living with recently diagnosed multiple sclerosis. Journal of Phenomenological Psychology, 34(2), 157-178.
22. Finlay son, M., Van Denend, T., DalMonte, J. (2005). Older adults’ perspectives on the positive and negative aspects of living with multiple sclerosis. British Journal of Occupational Therapy, 68(3), 117-124.
23. Fruni, D. (1998). Social Services Inspectorate: Inspection of local authority support for carers. Retrieved 9th August 2006 from http://www.dh.gov.uk/policyandguidelines/socialservicesinspectorate/fs/en www.dh.gov.uk/ from Publications and Statistics.
24. Grima, D. T., Torrance, G. W., Francis, G., Rice, G., Rosner, A. N., & Fortune, L. (2000). Health related quality of life consequences of multiple sclerosis. Multiple Sclerosis, 6, 91-98.
25. Gulick, E. (1995). Coping among spouses or significant others of persons with multiple sclerosis. Nursing Research, 44(4), 221-225.
26. Hancock, B. (2000). An introduction to research methodology. In A. Wilson, M. Williams & B. Hancock (Eds.), Research approaches in primary care (pp. 3-20). Abingdon, Radcliffe.
27. Jackson, J. (1998). The value of occupation as the core of treatment: Sandy's experience. American Journal of Occupational Therapy, 52(6), 466-473.
28. Jackson, J., Carlson, M., Mandel, D., Zemke, R., & Clark, F. (1998). Occupation in lifestyle redesign: The well elderly study occupational therapy programme. American Journal of Occupational Therapy, 52(5), 326-336.
29. Jackson, F., & Quaal, C. (1991). Effects of multiple sclerosis on occupational and career patterns. Axon, 16-23.
30. Krupp, L. B., Alvarez, L. A., Larocca, N. G., & Scheinberg, L.G. (1988). Fatigue in multiple sclerosis. Archives of Neurology, 45,435-437.
31. Lackey, N., & Gates, M. (2001). Adults recollections of their experiences as young caregivers of family members with chronic physical illness. Journal of Advanced Nursing, 34(3), 320-328.
32. Laliberte-Rudman, D., & Moll, S. (2001). In-depth interviewing. In J. Valiant Cook (Ed.), Qualitative research in occupational therapy (pp. 24-57). Delmar: Thomson Learning.
33. Lincoln, Y., & Guba, E. (1985). Naturalistic inquiry. Beverly Hills, CA, Sage.
34. Lindsay, K., & Bone, I. (2004). Neurology and neurosurgery illustrated. London: Churchill Livingstone.
35. 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.
36. Monks, J. (1990). Personal and social meanings of multiple sclerosis. In L. de Souza (Ed.), Multiple sclerosis; Approaches to management. London: Chapman and Hall.
37. Multiple Sclerosis Trust. (2004). Multiple sclerosis explained. London: multiple sclerosis Trust.
38. Nolan, M., & Nolan, J. (1998). Rehabilitation in multiple sclerosis: The potential nursing contribution. British Journal of Therapy and Rehabilitation, 5(7), 370-375.
39. Ohman, M., & Soderberg, S. (2004). The experiences of close relatives living with a person with serious chronic illness. Qualitative Health Research, 14(3), 396-410.
40. Pakenham, K. (2005). Relations between coping and positive and negative outcomes in carers of persons with multiple sclerosis (multiple sclerosis). Journal of Clinical Psychology in Medical Settings, 12(1), 25-38.
41. Pigeon, N., & Hen wood, K. (1997). Using grounded theory in psychological research. In N. Hayes (Ed.), Doing qualitative analysis in psychology (pp. 245-273). Hove: Psychological Press.
42. Robinson, I. (1990). Personal narratives, social careers and medical courses: Analysing life trajectories in autobiographies of people with multiple sclerosis. Social Science Medicine, 30(11), 1173-1186.
43. Robinson, K. (1990). The relationship between social skills, social support, self esteem and burden in adult caregivers. Journal of Advanced Nursing, 15, 788-795.
44. Robinson, L, Jones, R., & Segal, J. (1990). Patients, their families and multiple sclerosis. In L. de Souza (Ed.), Multiple sclerosis: Approaches to management (pp. 153-174). London: Chapman and Hall.
45. Silcox, L. (2003). Occupational therapy and multiple sclerosis. London: Whurr.
46. Smith, J. A. (1995). Semi structured interviewing and qualitative analysis. In J. A. Smith, R. Harre & L. Van Langenhove (Eds.), Rethinking methods in psychology (pp. 9-26). London: Sage.
47. Smith, J. A. (2004). Reflecting on the development of interpretative phenomenological analysis and its contribution to qualitative research. Qualitative Research in Psychology, 7(1), 39-54.
48. Soanes, C., & Stevenson, A. (2004). The concise Oxford dictionary (11th ed.). Oxford University Press.
49. Strauss, A. L., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. London: Sage.
50. Strauss, A. L., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory. London: Sage Publications.
51. Valiant Cook, J. (2001). Qualitative research in occupational therapy: Strategies and experiences. Delmar: Thomson Learning.
52. Van Exel, N. J. A., Van Den Berg, B., Koopmanschap, M. A., & Van Den Bos, G. A. M. (2004). What really matters: An inquiry into the relative importance of dimensions of informal caregiver burden. Clinical Rehabilitation, 18, 683-693.
53. Weinshenker, B. G. (1995). The natural history of multiple sclerosis. Neurologic Clinics of North America, 13, 119-146.
54. Whalley Hammell, K. (2002). Informing client-centred practice through qualitative inquiry: Evaluating the quality of qualitative research. British Journal of Occupational Therapy, 65(4), 175-184.
55. Wilcock, A. (1998a). Occupation for health. British Journal of Occupational Therapy 67(8), 340-345.
56. Wilcock, A. (1998b). Reflections on doing, being and becoming. Canadian Journal of Occupational Therapy, 65(5), 248-256.
57. Wilcock, A., & Hocking, C. (2004). Occupation, population health and policy development. In M. Molineux (Ed.), Occupation for occupational therapists (pp. 219-230). London: Blackwell Publishing.
58. Wright-St. Clair, V. (2003). Storymaking and storytelling: Making sense of living with multiple sclerosis. Journal of Occupational Science, 70(1), 46-51.
59. Willig, C. (2001). Introducing qualitative research in psychology. Philadelphia: Open University Press.
60. Yerxa, E. (1998). Health and the human spirit for occupation. American Journal of Occupational Therapy, 52(6), 412-418.
61. Yerxa, E., Clark, F., Jackson, J., Parham, D., Pierce, D., Stein, C., & Zemke, R. (1989). An introduction to occupational science: A foundation for occupational therapy in the 21st century. Occupational Therapy in Health Care, 6(4), 1-17.