Selected Factors of Socioeconomic Status in Parents of Children with Cystic Fibrosis

Renata Agnieszka Zubrzycka

Abstract


The article presents the results of the author’s own research concerning selected factors of socioeconomic status (SES) in 130 parents (100 women and 30 men) of children with cystic fibrosis (CF) and equal group of parents of children without CF. Diagnostic survey was carried out with the use of questionnaires. The research proves that mothers and fathers of children with CF show no significant differences compared to parents of children without CF when it comes to completed education level and declared monthly income per head (mothers show the difference near the level of statistical significance). The differences have been observed in the cases of such SES factors as: professional activity and subjective evaluation of own material situation. An average monthly cost of treatment of a child with CF reaches 1,060.55 PLN according to one of the parents. The money is mainly spent on pharmacotherapy, journey to the specialist medical centres, and private medical treatments. It has been shown that only about ¼ of the surveyed are able to cover the above expenditures on their own. Therefore, further research into the socioeconomic status of parents of children with CF is needed to prepare adequate programmes of social support.


Keywords


cystic fibrosis, socioeconomic status, parents

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References


Ameljańczyk T., Czech M., Bator M., 2012, Economic and social burden of cystic fibrosis in Poland. Estimates based on patients-reported data. “Journal of Health Policy, Outcomes Research”, 2, 34–40.

Angelis A., Kanavos P., López-Bastida J., Linertová R., Nicod E., Serrano-Aguilar P., BURQOL-RD Research Network, 2015, Social and economic costs and health-related quality of life in non-institutionalised patients with cystic fibrosis in the United Kingdom, “BMC. Health Services Research”, 15, 428.

Borawska-Kowalczyk U., Bodnar R., Meszaros A., Sands D., 2015, Comparison of health-related quality of life among children with cystic fibrosis and their parents in two Eastern European countries. “Journal of Cystic Fibrosis”, 14, 798–804.

Duff A. J. A., 2015, Depression in cystic fibrosis: Implications of The International Depression/Anxiety Epidemiological Study (TIDES) in cystic fibrosis. "Paediatric Respiratory Reviews”, 165, 2–5.

Glasscoe C., Lancaster G. A., Smyth R. L., Hill J., 2007, Parental depression following the early diagnosis of Cystic Fibrosis: A matched, prospective study. “The Journal of Pediatrics”, 150, 185–191.

Gu Y., García-Pérez S., Massie J., van Gool K., 2015, Cost of care for cystic fibrosis: an investigation of cost determinants using national registry data. “The European Journal of Health Economics”, 16 (7), 709–717.

Kornas-Biela D., 1990, Coping strategies in CF families. “Acta Universitatis Carolinae. Medica”, 36, 233–234.

Korzeniewska A., Stelmach W., Jurałowicz D, Stelmach I., 2006, Wpływ czynników socjoekonomicznych na przebieg mukowiscydozy. „Pediatria Polska”, 81(11), 818–822.

Lohn Z., Ostrowski T., Wyczesany J., 1995, Sytuacja rodzinna dzieci przewlekle chorych. W: R. Kurzawa, J. Wyczesany (red.), Dziecko chore na astmę. Kraków, Universitas, 99–111.

Maciarz A., 2001, Psychoemocjonalne i wychowawcze problemy dzieci przewlekle chorych. Kraków, IMPULS.

Mazurek H. (red.), 2012, Mukowiscydoza. Warszawa, Medical Tribune Polska.

Neri L., Lucidi V., Catastini P., Colombo C., LINFA Study Group, 2016, Caregiver burden and vocational participation among parents’ of adolescents with CF. “Pediatric Pulmonology”, 51(3), 243–252.

Nojszewska E., 2016, Społeczno-ekonomiczne czynniki determinujące status zdrowotny społeczeństwa na przykładzie Polski. „Ekonomia i Prawo w Ochronie Zdrowia”, 1, 59–74.

Orlik T., 2014, Fizjoterapia chorych na mukowiscydozę. Nowy Dwór Mazowiecki, Wydawnictwo FREL.

Pilecka W., Stachel M., 2011, Adaptacja dziecka i jego rodziny w sytuacji przewlekłej choroby somatycznej. W: W. Pilecka (red.), Psychologia zdrowia dzieci i młodzieży. Perspektywa kliniczna. Kraków, Wydawnictwo UJ, 176–200.

Pogorzelski A., 2012a, Fizjoterapia układu oddechowego. W: H. Mazurek (red.), Mukowiscydoza. Warszawa, Medical Tribune Polska, 139–143.

Pogorzelski A., 2012b, Zajęcie układu pokarmowego. W: Mazurek H. (red.), Mukowiscydoza. Warszawa, Medical Tribune Polska, 145–164.

Prochenka M., Borawska-Kowalczyk U., Zawadzka D., Ołtarzewski M., Sands D., 2017, Quality of life of parents with children affected by cystic fibrosis. “Journal of Cystic Fibrosis”, 16, suppl. 1, 155.

Quittner A., DiGirolamo A., Michel M., Eigen H., 1992, Parental response to cystic fibrosis: a contextual analysis of the diagnosis phase. “Journal of Pediatric Psychology”, 17, 6, 683–704.

Quittner A. L., Goldbeck L., Abbott J., Duff A., Lambrecht P., Sole A., Tibosch M. M., Brucefors A. B., Yuksel H., Catastini P., Blackwell L., Barker D., 2014, Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. “Thorax”, 69, 1090–1097.

Quittner A. L., Schechter M. S., Rasouliyan L., Haselcorn T., Pasta D. J., Wagener J. S., 2010, Impact of Socioeconomic Status, Race and Ethnicity on Quality of Life in Patients With Cystic Fibrosis in the United States. “CHEST”, 137(3), 642–650.

Report of the APA Task Force on Socioeconomic Status, 2007. Washington, American Psychological Association.

Sands D., Zybert K., Mierzejewska E., Ołtarzewski M., 2015, Diagnosing CysticFibrosis in Newborn Screening in Poland – 15 years of experience. “Developmental Period Medicine”, 19(1), 17–24.

Sawicki G. S., Heller K. S.,Demars N, Robinson W. M., 2015, Motivating Adherence Among Adolesents with Cystic Fibrosis: Youth and Parents Perspectives. “Pediatric Pulmonology”, 50(2), 127–136.

Sekułowicz M.,2000, Matki dzieci niepełnosprawnych wobec problemów życiowych. Wrocław, Wydawnictwo Uniwersytetu Wrocławskiego.

Staab D., Wenninger K., Gerbert N., Rupprath K., Bisson S., Trettin M., Paul K. D., Keller K. M., Wahn U., 1998, Quality of life in patients with cystic fibrosis and their parents: what is important besides disease severity?. “Thorax”, 53, 727–731.

Sytuacja gospodarstw domowych w 2014 r. w świetle wyników badań budżetów gospodarstw domowych, 2015. Warszawa, GUS, [pozyskano z: http://stat.gov.pl/obszary-tematyczne/warunki-zycia/dochody-wydatki-i-warunki-zycia-ludnosci/sytuacja-gospodarstw-domowych-w-2014-r-w-swietle-wynikow-badanbudzetow-gospodarstw-domowych,3,14.html].

Taylor-Robinson D. C., 2013, The Effect of Socio-economic Status on Outcomes in Cystic Fibrosis. Thesis submitted in accordance with the requirements of the University of Liverpool for the degree of Doctor in Philosophy Department of Public Health and Policy University of Liverpool [niepublikowana praca doktorska udostępniona przez autora].

Taylor-Robinson R., Smyth R. L., Diggle P., Whitehead M., 2013, The effect of social deprivation on clinical outcomes and thec use of treatments in the UK cystic fibrosis population: a longituddinal study. “Lancet, Respiratory Medicine”, 1, 121–128.

Tluczek A., Koscik R. L., Farrell P. M., Rock M. J., 2005, Psychosocial Risk Associated With Newborn Screening for Cystic Fibrosis: Parents’ Experience While Awaiting the Sweat-Test Appointment. “Pediatrics”, 115(6), 1692–1703.

Wallenwein A., Schwarz M., Goldbeck L., 2017, Quality of life among German parents of children with cystic fibrosis: the effects of being a single caregiver, „Quality of Life Research” [pozyskano z: https://doi.org/10.1007/s11136-017-1662-x].

Walkowiak J., Pogorzelski A., Sands D. i wsp., 2009, Zalecenia Polskiego Towarzystwa Mukowiscydozy 2009, Poznań-Warszawa-Rzeszów. „Standardy Medyczne. Pediatria”, 6, 352–378.

Wong M. G., Heriot S. A. 2008, Parents of children with cystic fibrosis: how they hope, cope and despair?. “Child: Care, Health and Development”, 34(3), 344–354.




DOI: http://dx.doi.org/10.17951/lrp.2017.36.2.197
Date of publication: 2018-04-09 14:33:18
Date of submission: 2017-11-13 20:49:32


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