Adaptation to the disease – the psychological resources of families struggling with multiple sclerosis
DOI:
https://doi.org/10.5114/hpr.2020.94722Keywords:
multiple sclerosis, cohesion, family functioning, double ABC/X modelAbstract
Background
The functioning of a person affected with a chronic illness within a family is a complex and many-sided issue. The illness produces an adaptive mechanism, and the ultimate goal of all adaptive measures is to deal with the new situation. The present research was intended to determine the psychological and clinical factors underlying the correct functioning of families with a multiple sclerosis sufferer.
Participants and procedure
The research covered 108 families (216 persons) divided into three groups. We used an interview, the FACES IV questionnaire, the Dyadic Adjustment Scale, the Berlin Social Support Scales, the Coping Inventory for Stressful Situations, the Acceptance of Illness Scale, the Beck Depression Scale, the Mini-Mental State Exami-nation, the Controlled Oral Word Association Test, Raven’s Progressive Matrices, and the Similarities task from the Wechsler Adult Intelligence Scale.
Results
The results of the research showed a significant difference in how family life was assessed by the three groups regarding cohesion and flexibility. A significant difference also related to communication and family life satisfaction. The best fit with the data was shown by the model incorporating two groups of predictors – global psychological variables (family variables) and individual psychological variables.
Conclusions
Based on the research, it is highly probable that the majority of families with multiple sclerosis sufferers adjust relatively well to the disease. Despite chronic illness, a family can function correctly, but this largely depends on its ability to cope with stress. Clinical parameters of the illness, such as the degree of disability, proved to be irrelevant as predictors. It was also established that a system’s functioning depends on the mental condition of the healthy care-giving spouse. The patient’s cognitive impairment, especially his/her executive deficits, was found to be important.
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References
Ackroyd, K., Fortune, D. G., Price, S., Howell, S., Sharrack, B., & Isaac, C. L. (2011). Adversarial growth in patients with multiple sclerosis and their partners: Relationships with illness perceptions, disability and distress. Journal of Clinical Psychology in Medical Settings, 18, 372–379. https://doi. org/10.1007/s10880-011-9265-0.
Bogosian, A., Moss-Morris, R., & Hadwin, J. (2010). Psychosocial adjustment in children and adolescents with a parent with multiple sclerosis: a systematic review. Clinical Rehabilitation, 24, 789– 801. http://doi: 10.1177/0269215510367982.
Bowen, C., MacLehose, A., & Beaumont, J. G. (2011). Advanced multiple sclerosis and the psychosocial impact on families. Psychology and Health, 26, 113– 127. https://doi.org/10.1080/08870440903287934.
Chwastiak, L., Ehde, D. M., Gibbons, L. E., Sullivan, M., Bowen, J. D., & Kraft, G. H. (2002). Depressive symptoms and severity of illness in multiple sclerosis: Epidemiologic study of a large community sample. American Journal of Psychiatry, 159, 1862– 1868. https://doi.org/10.1176/appi.ajp.159.11.1862.
Cieślak, K. (1989). Polska wersja skali G. B. Spaniera służącej do pomiaru jakości związku małżeńskiego (DAS) [The Polish version of the Dyadic Adjustment Scale]. Przegląd Psychologiczny, 32, 1041–1049.
Czapiński, J. (1992). Psychologia szczęścia [Psychology of happiness]. Warszawa: Akademos. De Judicibus, M. A., & McCabe, M. P. (2007). The impact of the financial costs of multiple sclerosis on quality of life. International Journal of Behavioral Medicine, 14, 3–11. https://doi.org/10.1007/BF02999222.
Duvall, E. M. (1977). Marriage and family development (5th ed.). Philadelphia, PA: Lippincott. Figved, N., Myhr, K. M., Larsen, J. P., & Aarsland, D. (2007). Caregiver burden in multiple sclerosis: The impact of neuropsychiatric symptoms. Journal of Neurology, Neurosurgery and Psychiatry, 78, 1097– 1102. https://doi.org/10.1136/jnnp.2006.104216.
Finlayson, M., & Cho, C. (2008). A descriptive profile of caregivers of older adults with MS and the assistance they provide. Disability and Rehabilitation, 30, 1848–1857. https://doi.org/10.1080/096382807017 07324.
Green, G., & Todd, J. (2008). “Restricting choices and limiting independence”: Social and economic impact of multiple sclerosis upon households by level of disability. Chronic Illness, 4, 160–172. https:// doi.org/10.1177/1742395307087457.
Grytten, N., & Måseide, P. (2006). “When I am together with them I feel more ill.” The stigma of multiple sclerosis experienced in social relationships. Chronic Illness, 2, 195–208. https://doi. org/10.1179/174592006X129482.
Juczyński, Z. (2009). Narzędzia pomiaru w promocji i psychologii zdrowia [NPPPZ. Assessment and diagnostic instruments for health psychology promotion]. Warszawa: Pracownia Testów Psychologicznych Polskiego Towarzystwa Psychologicznego.
Kapica-Topczewska, K., Brola, W., Fudala, M., Tarasiuk, J., Chorazy, M., Snarska, K., Kochanowicz, J., & Kulakowska, A. (2018). Prevalence of multiple sclerosis in Poland. Multiple Sclerosis and Related Disorders, 21, 51–55. http://doi: 10.1016/j.msard.2018.02.016.
Kiwerski, J., Kowalski, M., & Krasuski, M. (1997). Schorzenia i urazy kręgosłupa [Diseases and spinal injuries]. Warszawa: Wydawnictwo Lekarskie PZWL.
Krokavcova, M., van Dijk, J. P., Nagyova, I., Rosenberger, J., Gavelova, M., Middel, B., Gdovinova, Z., & Groothoff, J. W. (2008). Social support as a predictor of perceived health status in patients with multiple sclerosis. Patient Education and Counseling, 73, 159–165. https://doi.org/10.1016/j.pec.2008.03.019.
Lezak, M. D., Howieson, D. B., Loring, D. W., Hannay, H. J., & Fischer, J. S. (2004). Neuropsychological assessment. New York: Oxford University Press.
Łuszczyńska, A., Kowalska, M., Mazurkiewicz, M., & Schwarzer, R. (2006). Berlińskie Skale Wsparcia Społecznego (BSSS). Wyniki wstępnych badań nad adaptacją skal i ich własnościami psychometrycznymi [Berlin Social Support Scales (BSSS): Polish version of BSSS and preliminary results on its psychometric properties]. Studia Psychologiczne, 44, 17–27.
Margasiński, A. (2013). Skale Oceny Rodziny. Polska adaptacja FACES IV (Flexibility and Cohesion Evaluation Scales) Davida H. Olsona [Polish adaptation of FACES IV (Flexibility and Cohesion Evaluation Scales) by David H. Olson]. Warszawa: Pracownia Testów Psychologicznych Polskiego Towarzystwa Psychologicznego.
McCubbin, H. I., Cauble, A. E., & Patterson, J. M. (1982). Family stress, coping, and social support. Springfield, IL: Charles Thomas Publisher Ltd.
McPheters, J. K., & Sandberg, J. G. (2010). The relationship among couple relationship quality, physical functioning, and depression in multiple sclerosis patients and partners. Families, Systems and Health, 28, 48–68. https://doi.org/10.1037/a0018818.
Meijer, A. M., & Oppenheimer, L. (1995). The excitation‐adaptation model of pediatric chronic illness. Family Process, 34, 441–454. https://doi. org/10.1111/j.1545-5300.1995.00441.x.
MSIF (2013). Atlas of MS 2013. Multiple Sclerosis International Federation. Retrieved from http:// www.msif.org/wp-content/uploads/2014/09/Atlasof-MS.pdf.
Ochojska, D. (2000). Stwardnienie rozsiane i rodzina: psychologiczna analiza sytuacji w rodzinach osób dorosłych chorych na stwardnienie rozsiane [Multiple sclerosis and the family: Psychological analysis of the situation in which families of adults suffer from multiple sclerosis]. Rzeszów: Wydawnictwo Wyższej Szkoły Pedagogicznej.
Olson, D. H. (2011). FACES IV and the Circumplex Model: validation study. Journal of Marital and Family Therapy, 37, 64–80. http://doi: 10.1111/j.1752-0606.2009.00175.x.
Pakenham, K. I. (2005). Benefit finding in multiple sclerosis and associations with positive and negative outcomes. Health Psychology, 24, 123–132. https://doi.org/10.1037/0278-6133.24.2.123.
Pakenham, K. I., Bursnall, S., Chiu, J., Cannon, T., & Okochi, M. (2006). The psychosocial impact of caregiving on young people who have a parent with an illness or disability: Comparisons between young caregivers and noncaregivers. Rehabilitation Psychology, 51, 113–126. https://doi.org/ 10.1037/0090-5550.51.2.113.
Rao, S. M., Leo, G. J., Ellington, L., Nauertz, T., Bernardin, L., & Unverzagt, F. (1991). Cognitive dysfunction in multiple sclerosis. II. Impact on employment and social functioning. Neurology, 41, 692–696. https://doi.org/10.1212/WNL.41.5.692.
Rodgers, J., & Calder, P. (1990). Marital adjustment: a valuable resource for the emotional health of individuals with multiple sclerosis. Rehabilitation Counseling Bulletin, 34, 24–32.
Samios, C., Pakenham, K. I., & O’Brien, J. (2015). A dyadic and longitudinal investigation of adjustment in couples coping with multiple sclerosis. Annals of Behavioral Medicine, 49, 74–83. https://doi.org/10.1007/s12160-014-9633-8.
Strelau, J., Jaworowska, A., Wrześniewski, K., & Szczepaniak, P. (2005). Kwestionariusz radzenia sobie w sytuacji stresowej CISS. Podręcznik [CISS. Coping Inventory for Stressful Situations]. Warszawa: Pracownia Testów Psychologicznych Polskiego Towarzystwa Psychologicznego.
Tompkins, S. A., Roeder, J. A., Thomas, J. J., & Koch, K. K. (2013). Effectiveness of a relationship enrichment program for couples living with multiple sclerosis. International Journal of MS Care, 15, 27–34. https://doi.org/10.7224/1537-2073.2012-002.
Treder, N., & Jodzio, K. (2014). Prevalence and clinical specificity of fatigue symptoms in chronic fatigue syndrome, multiple sclerosis, and myasthenia gravis. Health Psychology Report, 2, 83–89. https://doi.org/10.5114/hpr.2014.43914.
Treder-Rochna, N., & Jodzio, K. (2018). Specyfika funkcjonowania rodzin osób chorych na stwardnienie rozsiane w Modelu Kołowym Olsona [The specificity of functioning of the multiple sclerosis patient’s families in the Olson Circumplex Model]. Psychologia Rozwojowa, 23, 55–64. https://doi.org/10.4467/20 843879pr.18.016.9357.
Turpin, M., Leech, C., & Hackenberg, L. (2008). Living with parental multiple sclerosis: Children’s experiences and clinical implications. Canadian Journal of Occupational Therapy, 75, 149–156. https://doi.org/10.1177/000841740807500306.
van Asch, P. (2011). Impact of mobility impairment in multiple sclerosis 2-patients’ perspectives. European Neurological Review, 6, 115–120. https://doi. org/10.17925/enr.2011.06.02.115.