Perceived social support, spiritual well-being, and daily life fatigue in family caregivers of home mechanically ventilated individuals
Abstrakt
Providing care to a chronically ill person is a stressful situation, which may lead to burden. However, personal and social resources such as social support and spiritual well-being can protect caregivers from these negative consequences. To assess the role of these resources in counteracting fatigue, we examined 55 caregivers of their home mechanically ventilated relatives. The variables were measured with the Perceived Social Support Questionnaire, the Daily Life Fatigue Questionnaire, the Spiritual Index of Well-Being, and a survey. The method of ventilation did not differentiate resources and daily life fatigue in caregivers. Perceived social support was not significantly correlated with fatigue, but spiritual well-being correlated negatively with physical, mental, and social fatigue. Spiritual well-being can partly protect from daily life fatigue in the physical and mental areas.
Bibliografia
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Daaleman, T. P., & Frey, B. B. (2004). The Spirituality Index of Well-Being: A new instrument for health-related quality of life research. Annals of Family Medicine, 2, 499-503.
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McClain, C. S., Rosenfeld, B., & Breitbart, W. (2003). Effect of spiritual well-being on end-of-life despair in terminally ill cancer patients. Lancet, 361, 1603-1607.
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Basińska, M. [A.], Lewandowska, N., & Kasprzak, A. (2013). Wsparcie społeczne a zmęczenie życiem codziennym u opiekunów osób chorych na Alzheimera [Social support and daily life fatigue in caregivers of patients with Alzheimer’s disease]. Psychogeriatria Polska, 10(2), 49-58.Boerner, K., & Mock, S. E. (2012). Impact of patient suffering on caregiver well-being: Thecase of amyotrophic lateral sclerosis patients and their caregivers. Psychology, Health & Medicine, 17(4), 457-466.
Buck, H. G., & McMillan, S. C. (2012). A psychometric analysis of the Spiritual Needs Inventory in informal caregivers of patients with cancer in hospice home care. Oncology Nursing Forum, 39(4), 332-339.
Chabowski, M. (2005). Zmęczenie jako kategoria definicyjna w badaniach psychologicznych [Fatigue as a definitional category in psychological research]. In R. Koc, & Ł. Mazur (Eds.). Zmęczenie – psychospołeczny punkt widzenia [Fatigue – A psychosocial perspective] (pp. 5-11). Bydgoszcz, Poland: Social Psychology Students’ Association Press, Kazimierz Wielki University.
Chojnacka-Szawłowska, G. (2009). Zmęczenie a zdrowie i choroba [Fatigue, health, and illness]. Kraków: Oficyna Wydawnicza Impuls.
Daaleman, T. P., & Frey, B. B. (2004). The Spirituality Index of Well-Being: A new instrument for health-related quality of life research. Annals of Family Medicine, 2, 499-503.
Delgado-Guay, M. O., Parsons, H., Hui, D., De La Cruz, M. G., Thorney, S., & Bruera, E. (2013). Spirituality, religiosity, and spiritual pain among caregivers of patients with advanced cancer. The American Journal of Hospice & Palliative Care, 30(5), 455-461.Evans, R., Catapano, M., Brooks, D., Goldstein, R., & Avendano, M. (2012). Family caregiver perspectives on caring for ventilator-assisted individuals at home. Canadian Respiratory Journal, 19(6), 373-379.
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Heszen-Niejodek, I., & Gruszczyńska, E. (2004). Wymiar duchowy człowieka, jego znaczenie w psychologii zdrowia i jego pomiar [The spiritual dimension of man, its significance to health psychology, and its measurement]. Przegląd Psychologiczny, 47(1), 15-31.
Hobfoll, S. E. (2006). Stres, kultura i społeczność [Stress, culture, and society]. Gdańsk, Poland: Gdańskie Wydawnictwo Psychologiczne.
Jackson, H., & MacLeod, A. K. (2016). Well-being in chronic fatigue syndrome: Relationship to symptoms and psychological distress. Clinical Psychology & Psychotherapy, 24(4), 859-869.
Juczyński, Z. (2001). Kwestionariusz Wsparcia Społecznego F-SozU K-22 [Social Support Qu-estionnaire F-SozU K-22]. Łódź, Poland: unpublished study.Juczyński, Z., & Ogińska-Bulik, N. (2003). Zdrowie najważniejszym zasobem człowieka [Health as the most important human resource]. In Z. Juczyński & N. Ogińska-Bulik (Eds.), Zasoby osobiste i społeczne sprzyjające zdrowiu jednostki [Personal and social resourses conductive to the individual’s health] (pp. 9-16). Łódź, Poland: University of Łódź Press.
Kawczyńska-Butrym, Z. (2008). Wyzwania rodziny: zdrowie, choroba, niepełnosprawność, starość [Family challenges: Health, illness, disability, oldage]. Lublin, Poland: Wydawnictwo Makmed.
Kenneson, A., & Bobo, J. (2010). The effect of caregiving on women in families with Duchenne⁄ Becker muscular dystrophy. Health and Social Care in the Community, 18, 520-528.
Kózka, M., Wojtan, S., & Woźniak, E. (2011). Funkcjonowanie psychospołeczne opiekunów osób wentylowanych mechanicznie w domu [The psychosocial functioning of caregivers of home mechanically ventilated people]. Problemy Pielęgniarstwa, 19(2), 185-193.
Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York, NY, US: Springer Publishing.
Lanken, P. N., Terry, P. B., DeLisser, H. M., Fahy, B. F., Hansen-Flaschen, J., Heffner, J. E., Levy, M., & Yankaskas, J. R. (2008). An official American Thoracic Society clinical policy statement: Palliative care for patients with respiratory diseases and critical illnesses. American Journal of Respiratory and Critical Care Medicine, 177(8), 912-927.
Leow, M. Q., Chan, M. F., & Chan, S. W. (2014). Predictors of change in quality of life of family caregivers of patients near the end of life with advanced cancer. Cancer Nursing, 37(5), 391-400.Maghout-Juratli, S., Janisse, J., Schwartz, J., & Arnetz, B. (2010). The causal role of fatigue in the stress-perceived health relationship: A MetroNet study. Journal of the American Board of Family Medicine, 23(2), 212-219.
Masters, K. S. (2008). Mechanisms in the relation between religion and health with emphasis on cardiovascular reactivity to stress. Research in the Social Scientific Study of Religion, 19, 91-116.
McClain, C. S., Rosenfeld, B., & Breitbart, W. (2003). Effect of spiritual well-being on end-of-life despair in terminally ill cancer patients. Lancet, 361, 1603-1607.
McKeown, L., Porter-Armstrong, A., & Baxter, G. (2003). The needs and experiences of care-givers of individuals with multiple sclerosis: A systematic review. Clinical Rehabilitation, 17, 234-248.Moberg, D. O. (1984). Spiritual well-being: Background and issues. Review of Religious Research, 25(4), 351-364.
Pagnini, F., Banfi, P., Lunetta, C., Rossi, G., Castelnuovo, G., Marconi, A., . . . Molinari, E. (2012). Respiratory function of people with amyotrophic lateral sclerosis and caregiver distress level: A correlational study. Biopsychosocial Medicine, 6(1), 14-18.Pagnini, F., Lunetta, Ch., Rossi, G., Paolo, B., Gomi, K., Cellotto, N., Castelnuovo, G., Molinari, E., & Corbo, M. (2011). Existential well-being and spirituality of individuals with amyotrophic lateral sclerosis is related to psychological well-being of their caregivers. Amyotrophic Lateral Sclerosis, 12(2), 105-108.
Pagnini, F., Rossi, G., Lunetta, C., Banfi, P., Castelnuovo, G., Corbo, M., & Molinari, E. (2010). Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis. Psychology, Health & Medicine, 15(6), 685-693.
Park, C. L., Sacco, S. J., & Edmondson, D. (2012). Expanding coping goodness-of-fit: Religious coping, health locus of control, and depressed affect in heart failure patients. Anxiety, Stress & Coping, 25(2), 137-153.
Rabins, P. V., Fitting, M. D., Eastham, J., & Fetting, J. (1990). The emotional impact of caring for the chronically ill. Psychosomatics, 31(3), 331-336.
Roach, A. R., Averill, A. J., Segerstrom, S. C., & Kasarskis, E. J. (2009). The dynamics of quality of life in ALS patients and caregivers. Annals of Behavioral Medicine, 37, 197-206.
Salins, N., Deodhar, J., & Muckaden, M. A. (2016). Intensive care unit death and factors influencing family satisfaction of Intensive Care Unit care. Indian Journal of Critical Care Medicine, 20, 97-103.
Schwarzer, R., Knoll, N., & Rieckmann, N. (2004). Social support. In A. Kaptein & J. Weinman (Eds.), Health psychology (pp. 158-182). Oxford, UK: Blackwell.
Sęk, H. (2012). Rola wsparcia społecznego w sytuacjach stresu życiowego. O dopasowaniu wsparcia do wydarzeń stresowych [The role of social support in stressful life situations]. In H. Sęk & R. Cieślak (Eds.), Wsparcie społeczne, stres i zdrowie [Social support, stress, and health] (pp. 49-67). Warsaw, Poland: Wydawnictwo Naukowe PWN.
Sęk, H., & Cieślak, R. (2012). Wsparcie społeczne – sposoby definiowania, rodzaje i źródła wsparcia, wybrane koncepcje teoretyczne [Social support: Ways of defining, types and sources of support, selected theoretical conceptions]. In: H. Sęk & R. Cieślak (Eds.), Wsparcie społeczne, stres i zdrowie [Social support, stress, and health] (pp. 11-28). Warsaw, Poland: Wydawnictwo Naukowe PWN.
Simonds, A. K. (2003). Home ventilation. European Respiratory Journal, 22, 38-46.
Soltysiak, B., Gardiner, P., & Skirton, H. (2008). Exploring supportive care for individuals affected by Huntington’s disease and their family caregivers in a community setting. Journal of Clinical Nursing, 17(7B), 226-234.
Sołtys, M. (2016). Prace nad polską adaptacją Duchowego Wskaźnika Dobrostanu. Raport z badań [Work on the Polish adaptation of the Spiritual Index of Well-Being: A research report]. Bydgoszcz, Poland: Unpublished materials.
Stajduhar, K. (2003). Examining the perspectives of family members involved in the delivery of palliative care at home. Journal of Palliative Care, 19, 27-35.
Stodulska, M., & Biłogan, L. (2016).Wybrane aspekty jakości życia chorych wentylowanych mechanicznie w warunkach domowych oraz ich opiekunów [Selected aspects of the quality of life of home mechanically ventilated patients and their caregivers]. Nursing in Anaesthesiol-ogy & Intensive Care, 2(2), 33-40.
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