Social Support and Loneliness Among Parkinson Care Partners
Main Article Content
Abstract
Abstract
Background: Parkinson’s disease (PD) is a chronic, neurodegenerative disorder that leads to increasing debilitation over time. Previous research has shown that care partners of persons with PD are at risk for developing loneliness. Based on the Optimal Matching Model of Social Support (Cutrona & Russell, 1990), the primary aim of this study was to determine the types of social support that are associated with loneliness in this sample which, in turn, may lead to interventions designed to help care partners deal with feelings of loneliness.
Methods: A survey was mailed to care partners of persons with PD on the contact list of a regional Parkinson’s association. Response rate was 39%. Only responses from those who lived with the patient were included in the analyses (n=70). Standard measures of loneliness, perceived social support, questions related to care partners’ perspectives on patients’ disease status, and demographic information were included in the analyses.
Results: Linear regression analyses were conducted to determine which of five types of social support predicted loneliness. Results indicated that Attachment (which reflects emotional support) and Social Integration (which reflects network support) were significant predictors.
Conclusions: Findings indicate that care partners may benefit from specific types of support to lessen feelings of loneliness.Article Details
How to Cite
DUNK, Michelle et al.
Social Support and Loneliness Among Parkinson Care Partners.
Medical Research Archives, [S.l.], v. 5, n. 8, aug. 2017.
ISSN 2375-1924.
Available at: <https://esmed.org/MRA/mra/article/view/1443>. Date accessed: 16 dec. 2024.
Keywords
Loneliness, perceived social support, Parkinson’s disease, care partners, Optimal Matching Theory of Social Support
Section
Research Articles
The Medical Research Archives grants authors the right to publish and reproduce the unrevised contribution in whole or in part at any time and in any form for any scholarly non-commercial purpose with the condition that all publications of the contribution include a full citation to the journal as published by the Medical Research Archives.
References
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Addis, M. E., & Mahalik, J. R. (2003). Men, masculinity, and the contexts of help seeking. American Psychologist, 58(1), 5-14. doi:10.1037/0003-066X.58.1.5
Barusch, A. S., & Spaid, W. M. (1989). Gender differences in care-giving: Why do wives report greater burden? The Gerontologist, 29, 667
Beeson, R., Horton-Deutsch, S., Farran, C., & Neundorfer, M. (2000). Loneliness and depression in caregivers of persons with Alzheimer’s disease or related disorders. Issues in Mental Health Nursing, 21(8), 779–806.
Bergman-Evans, B. F. (1994). Alzheimer’s and related disorders: loneliness, depression, and social support of spousal caregivers. Journal of Gerontological Nursing, 20(3), 6–16.
Bigatti, S. M., & Cronan, T. A. (2002). An examination of the physical health, health care use, and psychological well-being of spouses of people with fibromyalgia syndrome. Health Psychology, 21(2), 157–166.
Blanton, P. (2013). Family caregiving to frail elders: Experiences of young adult grandchildren as auxiliary caregivers. Journal of Intergenera-tional Relationships, 11(1), 18-31. doi: 10.1080/15350770.2013.755076
Cotten, S. R., Anderson, W. A., & McCullough, B. M. (2013). Impact of internet use on loneliness and contact with others among older adults: cross-sectional analysis. Journal of medical Internet research, 15(2), e39.
Cutrona, C. E. (1990). Stress and social support - in search for optimal matching. Journal of Social and Clinical Psychology, 9(1), 3-14. doi: 10.1521/jscp.1990.9.1.3
Cutrona, C. E., & Cole, V. (2000). Optimizing support in the natural network. In S. Cohen, L. G. Underwood, & B. H. Gottlieb (Eds.), Social support measurement and intervention: A guide for health and social scientists (pp. 278-308). New York, NY: Oxford University Press.
Cutrona, C., & Russell, D. (1987). The provisions of social relationships and adaptations to stress. In W.H. Jones & D. Perlman (Eds.), Advances in personal relationships (Vol. 1, pp. 37–67). Greenwich, CT: JAI Press.
Cutrona, C. E., & Russell, D. W. (1990). Type of social support and specific stress: Toward a theory of optimal matching. In Sarason, B.R., Sarason, I.G., & Pierce, G.R. (Eds.), Social support: An interactional view (pp. 319-366). Oxford, England: John Wiley & Sons.
De Valk, H. A. G., & Schans, D. (2008). ‘They ought to do this for their parents’: Perceptions of filial obligations among immigrant and Dutch older people. Ageing and Society, 28, 49-66.
Dellmann-Jenkins, M., Blankenmeyer, M., & Pinkard, O. (2000). Young adult children and grandchildren in primary caregiver roles to older relatives and their service needs. Family Relations, 49(2), 177-186. doi: 10.1111/j.1741-3729.2000.00177.x
Dong, X., Zhang, M., & Chang, E.-S. (2016). The association between filial piety and loneliness among Chinese older adults in the greater Chicago area. Journal of Epidemiological Research, 2(1), 62-70.
Edwards, N. E., & Scheetz, P. S. (2002). Predictors of burden for caregivers of patients with Parkinson’s disease. Journal of Neuroscience Nursing, 34(4), 184–90.
Ellison, C. G., & Levin, J. S. (1998). The religion-health connection: Evidence, theory, and future directions. Health Education & Behavior, 25, 700-720.
Fees, B. S., Martin, P., & Poon, L. W. (1999). A model of loneliness in older adults. Journal of Gerontology, 54, 231–239.
Gilligan, C. (1982). In a different voice. Cambridge, MA: Harvard University Press.
Gove, W. R. (1984). Gender differences in mental and physical illness: The effects of fixed roles and nurturant roles. Social Science and Medicine, 19, 77–84.
Gove, W. R., & Tudor, J. F. (1973). Adult sex roles and mental illness. American Journal of Sociology, 78, 50–73.
Greene, J., Cohen, D., Siskowski, C., & Toyinbo, P. (2016). The relationship between family caregiving and the mental health of emerging young adult caregivers. Journal of Behavioral Health Services & Research, 1-13. doi: 10.1007/s11414-016-9526-7
Hoehn, M., & Yahr, M. (1967). Parkinsonism: Onset, progression and mortality. Neurology, 17, 427-442.
Hong, S., & Coogle, C. L. (2016). Spousal caregiving for partners with demen-tia: A deductive literature review testing Calasanti’s gendered view of care work. Journal Of Applied Gerontology, 35(7), 759-787. doi:10.1177/0733464814542246
Kim, O. (1999). Predictors of loneliness in elderly Korean immigrant women living in the United States of America. Journal of Advanced Nursing, 29, 1082–1088.
Krause, N., Ingersoll-Dayton, B., Liang, J., & Sugisawa, H. (1999). Religion, social support, and health among the Japanese elderly. Journal of Health and Social Behavior, 40(4), 405-421.
Kudlicka, A., Clare, L., & Hindle, J. V. (2013). Quality of life, health status and caregiver burden in Parkinson’s disease: Relationship to executive functioning. Geriatric Psychiatry, 29, 68-76.
Levine, C., Hunt, G. G., Halper, D., Hart, A. Y., Lautz, J., & Gould, D. A. (2005). Young adult caregivers: A first look at an unstudied population. American Journal of Public Health, 95(11), 2071-2075. doi: 10.2105/AJPH.2005.067702
Lindgren, C. L. (1996). Chronic sorrow in persons with Parkinson’s and their spouses. Scholarly Inquiry for Nursing Practice, 10(4), 351-366.
Litzelman, K., Kent, E. E., & Rowland, J. H. (2016). Social factors in informal cancer caregivers: The interrelationships among social stressors, relationship quality, and family functioning in the CanCORS data set. Cancer, 122(2), 278-286. doi: 10.1002/cncr.29741
Martinez-Martin, P., Rodriguez-Blazquez, C., & Forjaz, M. J. (2012). Quality of life and burden in caregivers for patients with Parkinson’s disease: Concepts, assessment and related factors. Expert Review of Pharmacoeconomics & Outcomes Research, 221-230. doi: 10.1586/erp.11.106
Mayo Clinic (2017). Disease and conditions: Parkinson’s disease. Retrieved from http://www.mayoclinic.org/diseases-conditions/parkinsons-disease/basics/definition/con-20028488
McRae, C., Diem, G., Vo, A., O’Brien, C., & Seeberger, L. (2002). Reliability of measurements of patient health status: a comparison of physician, patient, and caregiver ratings. Parkinsonism Related Disorders, 8, 187–192.
McRae, C., Fazio, E., Hartsock, G., Kelley, L., Urbanski, S., & Russell, D., (2009). Predictors of loneliness in caregivers of persons with Parkinson’s disease. Parkinsonism and Related Disorders, 15, 554-557. doi: 10.1016/jparkreldis.2009.01.007
Merluzzi, T. V., Philip, E. J., Yang, M., & Heitzmann, C. A. (2015). Matching of received social support with need for support in adjusting to cancer and cancer survivorship. Psycho-Oncology, 25, 684-690. doi: 10.1002/pon.3896
Navarta-Sanchez, M. V., Garcia, J. M. S., Riverol, M., Sesma, M. E. U. S., Ayesa, S. D. C., Bravo, S. A., Civera, N. C., & Portillo, M. C. (2016). Factors influencing psychosocial adjustment and quality of life in Parkinson patients and informal caregivers. Quality of Life Research, 25, 1959-1968. doi: 10.1007/s11136-015-1220-3
Parkinson’s Disease Foundation (n.d.). What is Parkinson’s disease? Retrieved from http://www.pdf.org/about_pd
Pearlin, L., Mullan, J., Semple, S., & Skaff, M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30(5), 583-594.
Robison, J., Fortinsky, R., Kleppinger, A., Shugrue, N., & Porter, M. (2009). A broader view of family caregiving: Effects of caregiving and caregiver conditions on depressive symptoms, health, work, and social isolation. The Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 64(6), 788-798. doi: 10.1093/geronb/gbp015
Rokach, A., Findler, L., Chin, J., Lev, S., & Kollender, Y. (2013). Cancer patients, their caregivers and coping with loneliness. Psychology, Health & Medicine, 18(2), 135-144. doi: 10.1080/13548506.2012.689839
Ross, C. E. (1987). The division of labor at home. Social Forces, 47, 816-833.
Russell, D. (1996). UCLA Loneliness Scale (Version 3): Reliability, Validity, and Factor Structure. Journal of Personality Assessment, 66(1), 20-40.
Russell, D. W. (2017). Normative data for the UCLA Loneliness Scale. Unpublished document, Department of Human Development & Family Studies, Iowa State University, Ames, IA.
Russell, D., & Cutrona, C. (1991). Social support, stress, and depressive symptoms among the elderly: Test of a process model. Psychology and Aging, 6(2), 190-201.
Russell, D., Peplau, L., & Cutrona, C. (1980). The Revised UCLA Loneliness Scale: Concurrent and Discriminant Validity Evidence. Journal of Personality and Social Psychology, 39(3), 472-480.
Schrag, A., Hovris, A., Morley, D., Quinn, N., & Jahanshahi, M. (2006). Caregiver-burden in Parkinson’s disease is closely associated with psychiatric symptoms, falls, and disability. Parkinsonism and Related Disorders, 12(1), 35–41. doi: 10.1016/j.parkreldis.2005.06.011
Secker, D. L., & Brown, R. G. (2005). Cognitive behavioural therapy (CBT) for carers of patients with Parkinson’s disease: A preliminary randomised controlled trial. Journal of Neurology, Neurosurgery, and Psychiatry, 76, 491-497. doi: 10.1136/jnnp.2004.042291
Soylu, C., Ozaslan, E., Karaca, H., & Ozkan, M. (2016). Psychological distress and loneliness in caregiver of advanced oncological inpatients. Journal of Health Psychology, 21(9), 1896-1906. doi: 10.1177/1359105314567770
Tebb, S., & Jivanjee, P. (2000). Caregiver isolation: An ecological model. Journal of Gerontological Social Work, 34(2), 52-72. doi: 10.1300/J083v34n02_06
Trivedi, R., Beaver, K., Bouldin, R. D., Eugenio, E., Zeliadt, S. B., Nelson, K., Rosland, A. M., Szarka, J. G., & Piette, J. D. (2014). Characteristics and well-being of informal caregivers: Results from a nationally-representative US survey. Chronic Illness, 10(3), 167-179. doi: 10.1177/1742395313506947
Weiss, R. S. (Ed.) (1973). Loneliness: The experience of emotional and social isolation. Cambridge, MA: MIT Press.
Weiss, R. (1974). The provisions of social relationships. In Z. Rubin (Ed.), Doing unto others (pp. 17-26). Englewood Cliffs, NJ: Prentice Hall.
Wooten, G.F., Currie, L.J., Bovbjerg, V.E., Lee, J.k., Patrie, j. (2004). Are men at greater risk for Parkinson’s disease than women? J Neurol Neurosurg Psychiatry, 637–639. doi: 10.1136/ jnnp.2003.020982
Addis, M. E., & Mahalik, J. R. (2003). Men, masculinity, and the contexts of help seeking. American Psychologist, 58(1), 5-14. doi:10.1037/0003-066X.58.1.5
Barusch, A. S., & Spaid, W. M. (1989). Gender differences in care-giving: Why do wives report greater burden? The Gerontologist, 29, 667
Beeson, R., Horton-Deutsch, S., Farran, C., & Neundorfer, M. (2000). Loneliness and depression in caregivers of persons with Alzheimer’s disease or related disorders. Issues in Mental Health Nursing, 21(8), 779–806.
Bergman-Evans, B. F. (1994). Alzheimer’s and related disorders: loneliness, depression, and social support of spousal caregivers. Journal of Gerontological Nursing, 20(3), 6–16.
Bigatti, S. M., & Cronan, T. A. (2002). An examination of the physical health, health care use, and psychological well-being of spouses of people with fibromyalgia syndrome. Health Psychology, 21(2), 157–166.
Blanton, P. (2013). Family caregiving to frail elders: Experiences of young adult grandchildren as auxiliary caregivers. Journal of Intergenera-tional Relationships, 11(1), 18-31. doi: 10.1080/15350770.2013.755076
Cotten, S. R., Anderson, W. A., & McCullough, B. M. (2013). Impact of internet use on loneliness and contact with others among older adults: cross-sectional analysis. Journal of medical Internet research, 15(2), e39.
Cutrona, C. E. (1990). Stress and social support - in search for optimal matching. Journal of Social and Clinical Psychology, 9(1), 3-14. doi: 10.1521/jscp.1990.9.1.3
Cutrona, C. E., & Cole, V. (2000). Optimizing support in the natural network. In S. Cohen, L. G. Underwood, & B. H. Gottlieb (Eds.), Social support measurement and intervention: A guide for health and social scientists (pp. 278-308). New York, NY: Oxford University Press.
Cutrona, C., & Russell, D. (1987). The provisions of social relationships and adaptations to stress. In W.H. Jones & D. Perlman (Eds.), Advances in personal relationships (Vol. 1, pp. 37–67). Greenwich, CT: JAI Press.
Cutrona, C. E., & Russell, D. W. (1990). Type of social support and specific stress: Toward a theory of optimal matching. In Sarason, B.R., Sarason, I.G., & Pierce, G.R. (Eds.), Social support: An interactional view (pp. 319-366). Oxford, England: John Wiley & Sons.
De Valk, H. A. G., & Schans, D. (2008). ‘They ought to do this for their parents’: Perceptions of filial obligations among immigrant and Dutch older people. Ageing and Society, 28, 49-66.
Dellmann-Jenkins, M., Blankenmeyer, M., & Pinkard, O. (2000). Young adult children and grandchildren in primary caregiver roles to older relatives and their service needs. Family Relations, 49(2), 177-186. doi: 10.1111/j.1741-3729.2000.00177.x
Dong, X., Zhang, M., & Chang, E.-S. (2016). The association between filial piety and loneliness among Chinese older adults in the greater Chicago area. Journal of Epidemiological Research, 2(1), 62-70.
Edwards, N. E., & Scheetz, P. S. (2002). Predictors of burden for caregivers of patients with Parkinson’s disease. Journal of Neuroscience Nursing, 34(4), 184–90.
Ellison, C. G., & Levin, J. S. (1998). The religion-health connection: Evidence, theory, and future directions. Health Education & Behavior, 25, 700-720.
Fees, B. S., Martin, P., & Poon, L. W. (1999). A model of loneliness in older adults. Journal of Gerontology, 54, 231–239.
Gilligan, C. (1982). In a different voice. Cambridge, MA: Harvard University Press.
Gove, W. R. (1984). Gender differences in mental and physical illness: The effects of fixed roles and nurturant roles. Social Science and Medicine, 19, 77–84.
Gove, W. R., & Tudor, J. F. (1973). Adult sex roles and mental illness. American Journal of Sociology, 78, 50–73.
Greene, J., Cohen, D., Siskowski, C., & Toyinbo, P. (2016). The relationship between family caregiving and the mental health of emerging young adult caregivers. Journal of Behavioral Health Services & Research, 1-13. doi: 10.1007/s11414-016-9526-7
Hoehn, M., & Yahr, M. (1967). Parkinsonism: Onset, progression and mortality. Neurology, 17, 427-442.
Hong, S., & Coogle, C. L. (2016). Spousal caregiving for partners with demen-tia: A deductive literature review testing Calasanti’s gendered view of care work. Journal Of Applied Gerontology, 35(7), 759-787. doi:10.1177/0733464814542246
Kim, O. (1999). Predictors of loneliness in elderly Korean immigrant women living in the United States of America. Journal of Advanced Nursing, 29, 1082–1088.
Krause, N., Ingersoll-Dayton, B., Liang, J., & Sugisawa, H. (1999). Religion, social support, and health among the Japanese elderly. Journal of Health and Social Behavior, 40(4), 405-421.
Kudlicka, A., Clare, L., & Hindle, J. V. (2013). Quality of life, health status and caregiver burden in Parkinson’s disease: Relationship to executive functioning. Geriatric Psychiatry, 29, 68-76.
Levine, C., Hunt, G. G., Halper, D., Hart, A. Y., Lautz, J., & Gould, D. A. (2005). Young adult caregivers: A first look at an unstudied population. American Journal of Public Health, 95(11), 2071-2075. doi: 10.2105/AJPH.2005.067702
Lindgren, C. L. (1996). Chronic sorrow in persons with Parkinson’s and their spouses. Scholarly Inquiry for Nursing Practice, 10(4), 351-366.
Litzelman, K., Kent, E. E., & Rowland, J. H. (2016). Social factors in informal cancer caregivers: The interrelationships among social stressors, relationship quality, and family functioning in the CanCORS data set. Cancer, 122(2), 278-286. doi: 10.1002/cncr.29741
Martinez-Martin, P., Rodriguez-Blazquez, C., & Forjaz, M. J. (2012). Quality of life and burden in caregivers for patients with Parkinson’s disease: Concepts, assessment and related factors. Expert Review of Pharmacoeconomics & Outcomes Research, 221-230. doi: 10.1586/erp.11.106
Mayo Clinic (2017). Disease and conditions: Parkinson’s disease. Retrieved from http://www.mayoclinic.org/diseases-conditions/parkinsons-disease/basics/definition/con-20028488
McRae, C., Diem, G., Vo, A., O’Brien, C., & Seeberger, L. (2002). Reliability of measurements of patient health status: a comparison of physician, patient, and caregiver ratings. Parkinsonism Related Disorders, 8, 187–192.
McRae, C., Fazio, E., Hartsock, G., Kelley, L., Urbanski, S., & Russell, D., (2009). Predictors of loneliness in caregivers of persons with Parkinson’s disease. Parkinsonism and Related Disorders, 15, 554-557. doi: 10.1016/jparkreldis.2009.01.007
Merluzzi, T. V., Philip, E. J., Yang, M., & Heitzmann, C. A. (2015). Matching of received social support with need for support in adjusting to cancer and cancer survivorship. Psycho-Oncology, 25, 684-690. doi: 10.1002/pon.3896
Navarta-Sanchez, M. V., Garcia, J. M. S., Riverol, M., Sesma, M. E. U. S., Ayesa, S. D. C., Bravo, S. A., Civera, N. C., & Portillo, M. C. (2016). Factors influencing psychosocial adjustment and quality of life in Parkinson patients and informal caregivers. Quality of Life Research, 25, 1959-1968. doi: 10.1007/s11136-015-1220-3
Parkinson’s Disease Foundation (n.d.). What is Parkinson’s disease? Retrieved from http://www.pdf.org/about_pd
Pearlin, L., Mullan, J., Semple, S., & Skaff, M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30(5), 583-594.
Robison, J., Fortinsky, R., Kleppinger, A., Shugrue, N., & Porter, M. (2009). A broader view of family caregiving: Effects of caregiving and caregiver conditions on depressive symptoms, health, work, and social isolation. The Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 64(6), 788-798. doi: 10.1093/geronb/gbp015
Rokach, A., Findler, L., Chin, J., Lev, S., & Kollender, Y. (2013). Cancer patients, their caregivers and coping with loneliness. Psychology, Health & Medicine, 18(2), 135-144. doi: 10.1080/13548506.2012.689839
Ross, C. E. (1987). The division of labor at home. Social Forces, 47, 816-833.
Russell, D. (1996). UCLA Loneliness Scale (Version 3): Reliability, Validity, and Factor Structure. Journal of Personality Assessment, 66(1), 20-40.
Russell, D. W. (2017). Normative data for the UCLA Loneliness Scale. Unpublished document, Department of Human Development & Family Studies, Iowa State University, Ames, IA.
Russell, D., & Cutrona, C. (1991). Social support, stress, and depressive symptoms among the elderly: Test of a process model. Psychology and Aging, 6(2), 190-201.
Russell, D., Peplau, L., & Cutrona, C. (1980). The Revised UCLA Loneliness Scale: Concurrent and Discriminant Validity Evidence. Journal of Personality and Social Psychology, 39(3), 472-480.
Schrag, A., Hovris, A., Morley, D., Quinn, N., & Jahanshahi, M. (2006). Caregiver-burden in Parkinson’s disease is closely associated with psychiatric symptoms, falls, and disability. Parkinsonism and Related Disorders, 12(1), 35–41. doi: 10.1016/j.parkreldis.2005.06.011
Secker, D. L., & Brown, R. G. (2005). Cognitive behavioural therapy (CBT) for carers of patients with Parkinson’s disease: A preliminary randomised controlled trial. Journal of Neurology, Neurosurgery, and Psychiatry, 76, 491-497. doi: 10.1136/jnnp.2004.042291
Soylu, C., Ozaslan, E., Karaca, H., & Ozkan, M. (2016). Psychological distress and loneliness in caregiver of advanced oncological inpatients. Journal of Health Psychology, 21(9), 1896-1906. doi: 10.1177/1359105314567770
Tebb, S., & Jivanjee, P. (2000). Caregiver isolation: An ecological model. Journal of Gerontological Social Work, 34(2), 52-72. doi: 10.1300/J083v34n02_06
Trivedi, R., Beaver, K., Bouldin, R. D., Eugenio, E., Zeliadt, S. B., Nelson, K., Rosland, A. M., Szarka, J. G., & Piette, J. D. (2014). Characteristics and well-being of informal caregivers: Results from a nationally-representative US survey. Chronic Illness, 10(3), 167-179. doi: 10.1177/1742395313506947
Weiss, R. S. (Ed.) (1973). Loneliness: The experience of emotional and social isolation. Cambridge, MA: MIT Press.
Weiss, R. (1974). The provisions of social relationships. In Z. Rubin (Ed.), Doing unto others (pp. 17-26). Englewood Cliffs, NJ: Prentice Hall.
Wooten, G.F., Currie, L.J., Bovbjerg, V.E., Lee, J.k., Patrie, j. (2004). Are men at greater risk for Parkinson’s disease than women? J Neurol Neurosurg Psychiatry, 637–639. doi: 10.1136/ jnnp.2003.020982