Illness experience in a chronic disease - ALS
Abstract
The representative case study method was used in a 1-year longitudinal study of two individuals with a chronic, degenerative, terminal neurological disease, ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig's Disease). Participants were interviewed in their homes every 2 months to examine the effects of the illness on relationships with family, friends and the health care system. Changing ideas regarding causation, the use and evaluation of various therapies, use of illness role models, spiritual changes and symptom experience were also explored. Kleinman's concept of explanatory models guides the analysis of the data, although we argue for a greater emphasis on evaluation of therapies within this model.
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Patients with MND identify having control over end-of-life decisions as important.
“Finally, having control over the end of life decisions was also identified (7, 12, 14, 20, 27, 28).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [12]
Patients with MND can feel sadness and grief about the losses the illness has imposed on their lives.
“Patients could also feel sadness and grief about the losses the illness had imposed on their lives (1, 5, 12).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [12]
Patients with MND describe the need to retain dignity and feel respected during interactions.
“Patients described the need to retain dignity and feel respected during interactions (5, 7, 12, 13, 15, 23, 25).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [12]
The role and care given by health care professionals is important because support from health care professionals influences participants' mental well-being and coping.
“The role and care given by HCPs was identified as important in that support from health care professionals influenced participants mental well-being and coping (4, 5, 12, 14, 16, 23, 26).”
From Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis (2015) · cites this paper as [12]
Cites
The Professional Stranger: An Informal Introduction to Ethnography.
Broadhead, R. S., & Agar, M. (1981) · Contemporary Sociology A Journal of Reviews · doi:10.2307/2067207 · Cited by 1,986 · see citing works
Concepts and a model for the comparison of medical systems as cultural systems
Kleinman, A. (1978) · Social Science & Medicine Part B Medical Anthropology · doi:10.1016/0160-7987(78)90014-5 · Cited by 1,014 · see citing works
Asian Medical Systems: A Comparative Study
McLennan, H. (1977) · Pacific Affairs · doi:10.2307/2756126 · Cited by 330 · see citing works
Traditional Asian Medicine and Cosmopolitan Medicine as Adaptive Systems
Dunn, F. L. (1976) · University of California Press eBooks · doi:10.1525/9780520322295-011 · Cited by 182 · see citing works
Epidemiology of amyotrophic lateral sclerosis.
Kurtzke, J. F. (1982) · PubMed · Cited by 165 · see citing works
ALS in Rochester, Minnesota, 1925–1977
Juergens, S. M., Kurland, L. T., Okazaki, H., & Mulder, D. W. (1980) · Neurology · doi:10.1212/wnl.30.5.463 · Cited by 137 · see citing works
Ambiguity and the search for meaning: Childhood leukaemia in the modern clinical context
Comaroff, J., & Maguire, P. (1981) · Social Science & Medicine Part B Medical Anthropology · doi:10.1016/0160-7987(81)90034-x · Cited by 129 · see citing works
Patient Resistance and Prognosis in Amyotrophic Lateral Sclerosis
Mulder, D. W., & HOWARD, F. M. (1976) · Mayo Clinic Proceedings · doi:10.1016/s0025-6196(25)07084-3 · Cited by 117 · see citing works
Epidemiology of amyotrophic lateral sclerosis: 1. A case‐control comparison based on ALS deaths
Kurtzke, J. F., & Beebe, G. W. (1980) · Neurology · doi:10.1212/wnl.30.5.453 · Cited by 107 · see citing works
The relevance of traditional medical cultures to modern primary health care
Young, A. (1983) · Social Science & Medicine · doi:10.1016/0277-9536(83)90013-8 · Cited by 86 · see citing works
Research methods in personality
Shontz, F. C. (1965) · Appleton-Century-Crofts eBooks · Cited by 84 · see citing works
Psychological Characteristics of Patients with Amyotrophic Lateral Sclerosis (ALS)
Houpt, J. L., Gould, B. S., & Norris, F. H. (1977) · Psychosomatic Medicine · doi:10.1097/00006842-197709000-00003 · Cited by 64 · see citing works
Adaptation to Chronic Illness and Disability
Shontz, F. C. (1982) · Springer eBooks · doi:10.1007/978-1-4613-3412-5_8 · Cited by 50 · see citing works
Is There a Characteristic Personality Profile in Amyotrophic Lateral Sclerosis?
Peters, P. K. (1978) · Archives of Neurology · doi:10.1001/archneur.1978.00500290067011 · Cited by 34 · see citing works
Kaufert, P., & Kaufert, J. M. (1984) · Social Science & Medicine · doi:10.1016/0277-9536(84)90227-2 · Cited by 34 · see citing works
Psychosocial metaphors of physical distress among MS patients
DuVal, M. (1984) · Social Science & Medicine · doi:10.1016/0277-9536(84)90230-2 · Cited by 30 · see citing works
Motor neuron disease: changing population patterns and clues for etiology.
Kondo, K. (1978) · PubMed · Cited by 25 · see citing works
Self-help models and consumer intensive health practice.
Gartner, A., & Riessman, F. (1976) · American Journal of Public Health · doi:10.2105/ajph.66.8.783 · Cited by 23 · see citing works
Diagnosis and Treatment of Amyotrophic Lateral Sclerosis
(1981) · Neurology · doi:10.1212/wnl.31.12.1581-a · Cited by 23 · see citing works
The Sting of Death in American Society
Fox, R. C. (1981) · Social Service Review · doi:10.1086/643890 · Cited by 19 · see citing works
Disability dilemmas and rehabilitation tensions: A twentieth century inheritance
Greenwood, J. (1985) · Social Science & Medicine · doi:10.1016/0277-9536(85)90377-6 · Cited by 17 · see citing works
Part one: Pluralistic legitimation of an alternative therapy system: The case of chiropractic
Cobb, A. K. (1977) · Medical Anthropology · doi:10.1080/01459740.1977.9965826 · Cited by 13 · see citing works
CAN “CLINICALLY APPLIED ANTHROPOLOGY” SURVIVE IN MEDICAL CARE SETTINGS?
Phillips, M. (1985) · Medical Anthropology Quarterly · doi:10.1111/j.1937-6219.1985.tb00964.x · Cited by 11 · see citing works
Flagged first, then by citations
Cited by
Sorted by citations
Influence of the Research Frame on Qualitatively Derived Health Science Knowledge
Thorne, S. E., Joachim, G., Paterson, B. L., & Canam, C. (2002) · International Journal of Qualitative Methods · doi:10.1177/160940690200100101 · Cited by 156 · see citing works
A Synthesis of Qualitative Research on Wellness-Illness
Jensen, L. A., & Allen, M. N. (1994) · Qualitative Health Research · doi:10.1177/104973239400400402 · Cited by 146 · see citing works
Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis
Pagnini, F., Rossi, G., Lunetta, C., Banfi, P., Castelnuovo, G., Corbo, M., & Molinari, E. (2010) · Psychology, Health & Medicine · doi:10.1080/13548506.2010.507773 · Cited by 139 · see citing works
Psychological wellbeing and quality of life in amyotrophic lateral sclerosis: A review
Pagnini, F. (2012) · International Journal of Psychology · doi:10.1080/00207594.2012.691977 · Cited by 121 · see citing works
The psychological impact of MND on patients and carers
Goldstein, L. H., Adamson, M., Jeffrey, L., Down, K., Barby, T., Wilson, C., & Leigh, P. N. (1998) · Journal of the Neurological Sciences · doi:10.1016/s0022-510x(98)00209-3 · Cited by 98 · see citing works
Explanatory case studies: Implications and applications for clinical research
Fisher, I., & Ziviani, J. M. (2004) · Australian Occupational Therapy Journal · doi:10.1111/j.1440-1630.2004.00446.x · Cited by 87 · see citing works
Amyotrophic lateral sclerosis and hopelessness: psychosocial factors
Plahuta, J. M., McCulloch, B. J., Kasarskis, E. J., Ross, M. A., Walter, R. A., & McDonald, E. R. (2002) · Social Science & Medicine · doi:10.1016/s0277-9536(01)00356-2 · Cited by 73 · see citing works
The Impact of Neurological Illness on Marital Relationships
O’Connor, E. J., McCabe, M. P., & Firth, L. A. (2008) · Journal of Sex & Marital Therapy · doi:10.1080/00926230701636189 · Cited by 64 · see citing works
The Dependent Consumer: Reflections on Accounts of the Risks of Non-Prescription Medicines
Bissell, P., Ward, P., & Noyce, P. (2001) · Health An Interdisciplinary Journal for the Social Study of Health Illness and Medicine · doi:10.1177/136345930100500101 · Cited by 62 · see citing works
Coping strategies as related to medical and demographic data in amyotrophic lateral sclerosis
Montel, S., Albertini, L., & Spitz, E. (2012) · Acta Neurologica Scandinavica · doi:10.1111/j.1600-0404.2011.01513.x · Cited by 61 · see citing works
Pinder, R. (1992) · Sociology of Health & Illness · doi:10.1111/j.1467-9566.1992.tb00111.x · Cited by 42 · see citing works
Hirano, Y. M., Yamazaki, Y., Shimizu, J., Togari, T., & Bryce, T. J. (2006) · Social Science & Medicine · doi:10.1016/j.socscimed.2005.08.015 · Cited by 39 · see citing works
Experiences of living with motor neurone disease: a review of qualitative research
Sakellariou, D., Boniface, G., & Brown, P. (2013) · Disability and Rehabilitation · doi:10.3109/09638288.2012.753118 · Cited by 37 · see citing works
Soundy, A., & Condon, N. (2015) · Frontiers in Psychology · doi:10.3389/fpsyg.2015.00606 · Cited by 35 · see citing works
“Twenty nine articles (Cobb and Hamera, 1986; Cox, 1992; Young and McNicoll, 1998; Brown, 2003; Murphy, 2004; Hughes et al., 2005; Brott et al., 2006; Hugel et al., 2006; Vitale and Genge, 2006; Brown and Addington-Hall, 2007; Foley et al., 2007, 2014a,b; Fanos et al., 2008; King et al., 2009;…”
BackgroundMiglioretti, M., Mazzini, L., Oggioni, G. D., Testa, L., & Monaco, F. (2008) · Journal of Psychosomatic Research · doi:10.1016/j.jpsychores.2008.05.012 · Cited by 35 · see citing works
Patients' Perspectives of the Role of Care Providers in Amyotrophic Lateral Sclerosis
Beisecker, A. E., Cobb, A. K., & Ziegler, D. K. (1988) · Archives of Neurology · doi:10.1001/archneur.1988.00520290089019 · Cited by 23 · see citing works
Clinical psychology and amyotrophic lateral sclerosis
Pagnini, F. (2010) · Frontiers in Psychology · doi:10.3389/fpsyg.2010.00033 · Cited by 19 · see citing works
Toward a Cultural Anthropology of Disability and Rehabilitation
Hershenson, D. B. (2000) · Rehabilitation Counseling Bulletin · doi:10.1177/003435520004300305 · Cited by 17 · see citing works
Teaching qualitative research through participatory coursework and mentorship
Cobb, A. K., & Hoffart, N. (1999) · Journal of Professional Nursing · doi:10.1016/s8755-7223(99)80063-5 · Cited by 16 · see citing works
Perspectives of motor neurone disease
Cox, D. L. (1992) · Clinical Rehabilitation · doi:10.1177/026921559200600409 · Cited by 10 · see citing works
Evaluation of Clinical Practice Guidelines for Rare Diseases in Japan
Uchida, T., Takahashi, Y., Yamashita, H., Nakaoku, Y., Ohura, T., Okura, T., Masuzawa, Y., Hosaka, M., Kobayashi, H., Sengoku, T., et al. (2022) · JMA Journal · doi:10.31662/jmaj.2022-0094 · Cited by 6 · see citing works
Surgery and Caregiving: Loneliness of the Patients and Those Who Care for Them
Rokach, A., Miller, Y., Shick, S., Abu, R., & Matot, I. (2014) · Open Journal of Medical Psychology · doi:10.4236/ojmp.2014.33024 · Cited by 5 · see citing works
Hirano, Y., & Yamazaki, Y. (2009) · Japanese Journal of Health and Human Ecology · doi:10.3861/jshhe.75.79 · Cited by 4 · see citing works
Morgan, K. H., Havranek, K., Horn, C., Lee, M. L., & Thomas, S. P. (2025) · Neurodegenerative Disease Management · doi:10.1080/17582024.2025.2546761 · Cited by 1 · see citing works
Calix, K. K. (2026) · Palliative & Supportive Care · doi:10.1017/s1478951526101965
- Authors
- Cobb, A. K., & Hamera, E.
- Affiliations
- University of Kansas (US)
- Venue
- Social Science & Medicine
- Publisher
- Elsevier BV
- Published
- 1986-01
- Volume
- 23
- Issue
- 7
- Pages
- 641-650
- ISSN
- 0277-9536 (ISSN-L)
- OpenAlex
- W2013668116
- Cited by
- 26
- References
- 23
- Citations by year
- 2026: 1 · 2025: 1 · 2022: 2 · 2015: 1 · 2014: 1 · 2013: 1 · 2012: 1
- FWCI
- 2.18
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Social Science & Medicine (publishedVersion)
- PubMed (publishedVersion)
- RePEc: Research Papers in Economics (submittedVersion)
- Topics
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Health Sciences › Medicine › Psychiatry and Mental health › Medicine, History, and Philosophy
- Keywords
- amyotrophic lateral sclerosis, illness experience, chronic disease, explanatory models, treatment evaluation, spiritual transformation, symptom experience, family relationships, health care system
- MeSH terms
- Aged, Amyotrophic Lateral Sclerosis, Chronic Disease, Family, Female, Humans, Interpersonal Relations, Longitudinal Studies, Middle Aged, Sick Role
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