Tímarit hjúkrunarfræðinga


Tímarit hjúkrunarfræðinga - 01.02.1999, Síða 22

Tímarit hjúkrunarfræðinga - 01.02.1999, Síða 22
Lokaorð Fjölskyldur ungra barna með langvarandi astma standa frammi fyrir mörgum erfiðleikum. Vegna þess hvernig astmi hegðar sér hjá ungum börnum þurfa fjölskyldur ungra barna með astma oft og tíðum að vera í nánu sam- bandi við heilbrigðiskerfið í langan tíma. í þjóðfélagi, þar sem verið er að draga saman heilbrigðisþjónustuna og ábyrgðin á umönnun barns með langvarandi heilbrigðis- vandamál hefur færst í æ ríkari mæli yfir á fjölskyldurnar, er mikilvægt að beina athyglinni að umönnunarálagi fjöl- skyldna og því hvernig mæður og feður taka að sér mismunandi umönnunarhlutverk til að halda fjölskyldunni gangandi. Mikilvægir þættir í hjúkrunarþjónustu við fjöl- skyldur ungra barna með langvarandi astma eru að auka öryggi mæðra og feðra í umönnunarhlutverkum sínum sem og að upplýsa fjölskyldur um möguleg úrræði í sam- félaginu. Slíkar áherslur í heilbrigðisþjónustunni geta aukið bæði vellíðan barnsins með astmann sem og vellíðan foreldranna og fjölskyldunnar í heild. Þakkarorð Þegar litið er til baka og hugurinn látinn reika til þeirrar vinnu sem liggur að baki rannsókn þessari, koma margar góðar minningar upp í hugann. í fyrsta lagi vil ég einlæglega þakka öllum foreldrunum sem tóku þátt í rannsókninni fyrir að deila reynslu sinni með mér. Án hjálpar þessara fjölskyldna hefði rannsóknin aldrei orðið möguleg. í öðru lagi fá dr. Marilyn McCubbin, dr. Patricia Becker, dr. Janet Kane og dr. David Riley, sem öll eru framúrskarandi fræðimenn og góðir vinir, bestu þakkir fyrir alla leiðbeiningarnar, stuðninginn og hvatninguna á meðan á rannsóknarverkefninu stóð. Abstract The purpose of this study was to identify caregiving demands and task difficulties, in families who had an infant or a young child (0-6 years old) with asthma. Seventysix families (75 mothers and 62 fathers) who were living in the Midwest and the East Coast of the United States participated in the research. The Resiliency Model of Family Stress, Adjustment and Adaption (McCubbin & McCubbin, 1993; 1996) was the conceptual framework for the study. The most time-consuming care- giving task for both parents was to provide emotional and developmental support and manage discipline and behavioral problems for the child. The most difficult caregiving task for fathers and the second most difficult caregiving for mothers was to handle an asthma episode. These findings give healthcare professionals such as nurses’ new understand- ing of the demands and strains parents experience when they are caring for their young child with asthma. Heimildir Alexander, J. S., Younger, R. E., Cohen, R. M., & Crawford, L. V. (1988). Effectiveness of a nurse-managed program for children with chronic asthma. Journal of Pediatric Nursing, 3, (5), 312-317. Blasio, P. D., Molinari, E., Peri, G., & Taverna, A. (1990). Family compe- tence and childhood asthma: A preliminary study. Family Systems Medicine, 8, 2, 145-149. Bowlby, J. (1988). A Secure Base: Parent-Child Attachment and Healthy Human Development. Basic Books, Inc. U.S.A. 22 Brown, J. V., Avery, E., Mobley, C., Boccuti, L., & Golbach, T. (1996). Asthma management by preschool children and their families: A developmental framework. Journal ofAsthma, 33 (5), 299-311. Bussing, R., & Burket, R. (1993). Anxiety and intrafamilial stress in children with hemophilia after the HIV crisis. Journal of Ameríca Academy Child and Adolescence Psychiatry, 32 (3), 562-567. Clark, N. M., Feldman, C. H., Evans, D., Millman, E. J., Wailewski, Y., & Valle, I. (1981). The effectiveness of education for family management of asthma in children: A preliminary report. Health Education Quarteríy, 8, (2), 166-174. Eiser, C., Eiser, J. R., Town, C., &Tripp, J. H. (1991). Discipline strategies and parental perceptions of preschool children with asthma. British Journal of Medical Psychology, 64, 45-53. Erla Kolbrún Svavarsdóttir & McCubbin, M. A. (1996). The Asthma Factor Index. University of Wisconsin-Madison, Madison, Wl. Fitzpatrick, S. B., Coughlin, S. S., & Chamberline, J. (1992). A novel asthma camp intervention for childhood asthma among urban blacks. Journal of the National Medical Association, 84, (3), 233-237. Friedman, M. S. (1984). Psychological factors associated with pediatric asthma death: A review. Journal ofAsthma, 21 (2), 97-117. Hamlett, K. W., Pellegrini, D. S., & Katz, K. S. (1992). Childhood chronic illness as a family stressor. Journal of Pediatric Psychoiogy, 17, (1), 33-47. Klinnert, M. D., Mrazek, P. J., & Mrazek, D. A. (1994). Early asthma onset: The interaction between family stressors and adaptive parenting. Psychiatry, 57, 51-61. Lewis, M. A., Lewis, C. E, Leake, B., Monahan, G., & Rachelefsky, G. (1996). Organizing the community to target poor Latino children with asthma. Journal ofAsthma, 33 (5), 289-297. Luyt, D. K., Burton, P., Brooke, A. M., & Simpson, H. (1994). Wheeze in preschool children and its relation with doctor diagnosed asthma. Archives of Disease in Chitdhood, 71 (1), 24-30. McCubbin, M. A., Oberst, M., & Smith, P. (1990). The Care of my Child. Madison, Wl: University of Wl. McCubbin, M.A., & McCubbin, H.l. (1993). Family coping with illness: The resiliency model of family stress, adjustment and adaptation. j Danielson, C., Hamel-Bissell, B., & Winstead-Fry, P., (ritstj.) Families Health and illness. St. Louis:Mosby. McCubbin, M. A. & McCubbin, H. I. (1996). The resiliency model of family stress, adjustment and adaptation. In McCubbin, H. Thompson, A., & McCubbin, A. (Eds). Inventories for Research and Practice. (bls. 1-64, 103-117, 239-266). University of Wisconsin press. Madison, Wl. McCubbin, M. A. (1991). Family Profile Inventory. Madison, Wl: University of Wl. McCubbin, H., Thompson, A., & McCubbin, A. (1996). Family Assess- ment: Resiliency, Coping and Adaptation, Inventories for Research and Practice. (bls. 1-64, 103-117, 239-266). McCubbin, M. A., & Erla Kolbrún Svavarsdóttir. (1996). The Care of my Child with Asthma. Madison, Wl: University of Wl. McCubbin, M. A. (1996). The Care of my Child. Madison, Wl: University of Wl. Mrazek, D. A.. Mrazek, R, & Klinnert, M. (1995). Clinical assessment of parenting. Journal of American Academy of Child and Adolescent Psychiatry, 34, 3, 272-282. Nigthingale, F. (1969). Notes on Nursing What It Is and What It Is Not. Dover Publication, Inc. New York. Oberst, M. (1988). The Caregiving Burden Scale. Madison, Wl: University of Wl. Reisman, J. J., Canny, G. J., & Levison, C. H. (1991). Management of asthma in early life. Pediatrícian, 18, 280-286. Schöbinger, R., Florin, I., Reichbauer, M., Lindermann, H., & Zimmer, C. (1993). Childhood asthma: Mothers’ affective attitude, mother-child interaction and children’s compliance with medical requirements. Journal of Psychosomatic Research, 37, (7), 697-707. Smith, L. (1993). Childhood asthma: Diagnosis and treatment. Current Problem in Pediatics, August, 271-305. Tavormina, J. B., Boll, T. J., Dunn, N. J., Luscomb, R. L., &Taylor, J. R. (1981). Psychosocial effects on parents of raising a physically handi- capped child. Journal ofAbnormal Child Psychology, 9, 1, 121-131. Tinkelman, D., & Conner, B. (1994). Diagnosis and management of asthma in theyoung child. Journal of Asthma, 31 (6) 419-425. U.S. Department of Health and Human Services / Public Health Sen/ice, National Institutes of Heaith. (1991). Guidelines for the diagnosis and management of asthma. Publication No. 91-3042. Washington DC. Tímarit hjúkrunarfræðinga • 1. tbl. 75. árg. 1999

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