Ispitivanje primene pristupa usmerenog na porodicu dece s cerebralnom paralizom
DOI:
https://doi.org/10.18485/Ključne reči:
pristup usmeren na porodicu, cerebralna paraliza, saradnja, usluge, podrška porodicama, roditeljska procena, perspektiva roditeljaApstrakt
Cilj istraživanja je da se, utvrđivanjem stepena primene pristupa usmerenog na porodicu, ispita kvalitet saradnje i podrške pružene od strane ustanova i stručnjaka. Procena je vršena iz perspektive roditelja dece s cerebralnom paralizom, kao jednim od najtežih stanja čije se posledice značajno odražavaju i na porodično funkcionisanje. Studija preseka je obuhvatila 111 roditelja dece s cerebralnom paralizom, starosti 7–18 godina. Primenjena je skala Merenje procesa nege (Measure of Processes of Care – MPOC-20). Uočeno je da pristup usmeren na porodicu u najmanjem stepenu dolazi od ustanove (p < 0,001). Jake strane saradnje se ogledaju u partnerskom odnosu roditelja i stručnjaka koji odlikuju ravnopravnost, pozitivan i individualan pristup, međusobna saradnja i timski rad. Ukazano je na potrebu da se poboljša kvalitet pruženih usluga uvažavajući pristup usmeren na porodicu. Preporučuje se jasno, otvoreno i objektivno deljenje potpunih informacija koje se tiču deteta i njegovog stanja, ohrabrivanje i upućivanje porodice na korišćenje podrške iz zajednice.
Reference
[1] Alaee Nasrin, Shahboulaghi Farahnaz Mohammadi, Khankeh Hamidreza and Kermanshahi Sima Mohammad Khan, “Barriers to Support for Parents of Children with Cerebral Palsy: a Qualitative Study”, Journal of Qualitative Research in Health Sciences, Vol. 3, No. 4, pp. 305–316.
[2] Allen Reva and Petr Christopher, “Toward developing standards and measurements for family-centered practice in family support programs” in: George HS Singer, Laurie E. Powers and Ardis L. Olson (eds.), Redefining family support: Innovations in public–private partnerships, Paul H. Brookes Publishing, Baltimore, 1996, pp. 57–86.
[3] Aydýn Resa and Nur Hakan, “Family-Centered Approach in the Management of Children With Cerebral Palsy [Serebral Palsili Çocukların Tedavisinde Aile Odaklı Yaklaşım]”, Türkiye Fiziksel Tıp ve Rehabilitasyon Dergisi–Turkish Journal of Physical Medicine and Rehabilitation, Vol. 58, No. 3, pp. 229–235.
[4] Bjerre Ingrid, Larsson Magnus, Franzon Ann-Marie, Nilsson Margareta, Strömberg Gunilla and Westbom Lena, “Measure of Processes of Care (MPOC) applied to measure parent’s perception of the habilitation process in Sweden”, Child: Care, Health and Development, Vol. 30, No. 2, pp. 123–130.
[5] Brkić Miroslav, Stanković Dragana i Žegarac Nevenka, „Očekivanja roditelja dece sa smetnjama u razvoju od usluga u zajednici”, Godišnjak Fakulteta političkih nauka, Vol. 7, br. 9, str. 211–229.
[6] Chan Sophelia Hon-Shan, Lau Beverly Pui-Heung, Fong KH, Poon Mei-Ying and Lam Catherine Chi-Chin, “Neuroimpairment, activity limitation, and participation restriction among children with cerebral palsy in Hong Kong”, Hong Kong Medical Journal, Vol. 11, No. 5, pp. 342–350.
[7] Davis Kate and Gavidia-Payne Susana, “The impact of child, family, and professional support characteristics on the quality of life in families of young children with disabilities”, Journal of Intellectual and Developmental Disability, Vol. 34, No. 2, pp. 153–162.
[8] Dimitrijević Bojana, „Usluge u zajednici kao podrška roditeljima u pružanju dugotrajne nege deci i mladima sa invaliditetom”, Godišnjak Fakulteta političkih nauka, Vol. 8, br. 11, str. 113–130.
[9] Dragojević Nada, Stres u porodicama sa ometenim detetom, doktorska teza, Univerzitet u Beogradu, Fakultet za specijalnu edukaciju i rehabilitaciju, 2006.
[10] Dunst Carl, Trivette Carol and Hamby Deborah, “Meta-analysis of family-centered helpgiving practices research”, Mental Retardation and Developmental Disabilities Research Reviews, Vol. 13, No. 4, pp. 370–378.
[11] Dzamonja Ignjatovic Tamara, Milanovic Marko and Zegarac Nevenka, “How services for children with disabilities in Serbia affect the quality of life of their families”, Research in Developmental Disabilities, Vol. 68, pp. 1–8.
[12] Gliem Joseph and Gliem Rosemary, Calculating, Interpreting, and Reporting Cronbach’s Alpha Reliability Coefficient for Likert-Type Scales, Ohio State University, Columbus, Ohio, 2003. Available from: http://hdl.handle.net/1805/344 (Accessed 16 October 2015), pp. 82–88.
[13] Jeglinsky Ira, Family-Centeredness in Services and Rehabilitation Planning for Children and Youth With Cerebral Palsy in Finland, PhD thesis, Department of women’s and children’s health, Karolinska Institutet, Stockholm, Sweden, 2012.
[14] Karić Jasmina, Medenica Snežana i Miličević Iva, „Teškoće sa kojima se susreću porodice dece sa posebnim potrebama u sadašnjem trenutku”, Biomedicinska istraživanja, Vol. 4, br. 2, str. 67–72.
[15] Khetani Mary, Cohn Ellen, Orsmond Gael, Law Mary and Coster Wendy, “Parent Perspectives of Participation in Home and Community Activities When Receiving Part C Early Intervention Services”, Topics in Early Childhood Special Education, Vol. 32, No. 4, pp. 234–245.
[16] King Gillian and Chiarello Lisa, “Family-Centered Care for Children With Cerebral Palsy: Conceptual and Practical Considerations to Advance Care and Practice”, Journal of Child Neurology, Vol. 29, No. 8, pp. 1046–1054.
[17] King Gillian, Kertoy Marilyn, King Susanne, Law Mary, Rosenbaum Peter and Hurley Patricia, “A Measure of Parents’ and Service Providers’ Beliefs About Participation in Family-Centered Services”, Children’s Health Care, Vol. 32, No. 3, pp. 191–214.
[18] King Gillian, King Susanne, Rosenbaum Peter and Goffin Richard, “Family-centered caregiving and well-being of parents of children with disabilities: Linking process with outcome”, Journal of Pediatric Psychology, Vol. 24, No. 1, pp. 41–53.
[19] King Gillian, Rosenbaum Peter and King Sussane, “Evaluating family-centered service using a measure of parents’ perceptions”, Child: Care, Health and Development, Vol. 23, No. 1, pp. 47–62.
[20] King Susanne, King Gillian and Rosenbaum Peter, “Evaluating health service delivery to children with chronic conditions and their families: Development of a refined Measure of Processes of Care (MPOC-20)”, Children’s Health Care, Vol. 33, No. 1, pp. 35–57.
[21] King Susanne, Rosenbaum Peter and King Gillian, “Parents’ perceptions of caregiving: development and validation of a measure of processes”, Developmental Medicine & Child Neurology, Vol. 38, No. 9, pp. 757–772.
[22] King Susanne, Teplicky Rachel, King Gillian and Rosenbaum Peter, “Family-Centered Service for Children with Cerebral Palsy and Their Families: A Review of the Literature”, Seminars in Pediatric Neurology, Vol. 11, No. 1, pp. 78–86.
[23] Law Mary, Hanna Steven, King Gillian, Hurley Patricia, King Susanne, Kertoy Marilyn and Rosenbaum Peter, “Factors affecting family-centered service delivery for children with disabilities”, Child: Care, Health and Development, Vol. 29, No. 5, pp. 357–366.
[24] Law Mary, Petrenchik Theresa, King Gillian and Hurley Patricia, “Perceived Environmental Barriers to Recreational, Community, and School Participation for Children and Youth With Physical Disabilities”, Archives of Physical Medicine and Rehabilitation, Vol. 88, No. 12, pp. 1636–1642.
[25] Lawlor Katherine, Mihaylov Svetozar, Welsh Brenda, Jarvis Stephen and Colver Allan, “A qualitative study of the physical, social and attitudinal environments influencing the participation of children with cerebral palsy in northeast England”, Developmental Neurorehabilitation, Vol. 9, No. 3, pp. 219–228.
[26] McDowell Brona, Duffy Catherie and Parkes Jackie, “Service use and family-centered care in young people with severe cerebral palsy: a population-based, cross-sectional clinical survey”, Disability and Rehabilitation, Vol. 37, No. 25, pp. 2324–2329.
[27] Milićević Milena, „Cerebralna paraliza – šta nam literatura govori o složenosti ovog stanja?”, Beogradska defektološka škola, Vol. 22, br. 3, str. 53–71.
[28] Milićević Milena, “The relationship between family-centeredness of service delivery and parental satisfaction with the current home participation of their children with cerebral palsy”, Manuscript in preparation.
[29] Milićević Milena and Potić Srećko, “Functional Characteristics of People with Cerebral Palsy in the Adult Age” in: Milan Kulić, Mikailo Kijanović, Keith Storey and Hana Valkova (eds.), Cerebral Palsy – A Multidisciplinary and Multidimensional Approach International Thematic Collection of Papers, University of East Sarajevo – Faculty of Medicine Foca, Bosnia and Hezegovina and Association of Special Educators and Rehabilitators of Serbia, 2012, pp. 275–289.
[30] Molinaro Anna, Fedrizzi Ermellina, Calza Stefano, Pagliano Emanuela, Jessica Galli and Fazzi Elisa, “Family‐centered care for children and young people with cerebral palsy: results from an Italian multicenter observational study”, Child: Care, Health and Development, Vol. 43, No. 4, pp. 588–597.
[31] Nedović Goran, Rapaić Dragan, Odović Gordana, Potić Srećko i Milićević Milena, Socijalna participacija osoba sa invaliditetom, Društvo defektologa Srbije, Beograd, 2012.
[32] Pakula Amy Thornhill, Van Naarden Braun Kim and Yeargin-Allsopp Marshalyn, “Cerebral Palsy: Classification and Epidemiology”, Physical Medicine and Rehabilitation Clinics of North America, Vol. 20, No. 3, pp. 425–452.
[33] Pallant Julie, SPSS Survival Manual: A Step by Step Guide to Data Analysis Using SPSS for Windows (Version 15), Third Edition, Open University Press Milton Keynes, UK, USA, 2007.
[34] Raina Parminder, O’Donnell Maureen, Rosenbaum Peter, Brehaut Jamie, Walter Stephen D, Russell Dianne, Swinton Marilyn, Zhu Bin and Wood Ellen, “The Health and Well-Being of Caregivers of Children With Cerebral Palsy”, Pediatrics, Vol. 115, No. 6, pp. e626–e636.
[35] Rapaić Dragan, Cerebralna paraliza – praksičke i kognitivne funkcije, Defektološki fakultet, Beograd, 1996.
[36] Renty Jo and Roeyers Herbert, “Satisfaction with formal support and education for children with autism spectrum disorder: the voices of the parents”, Child: Care, Health and Development, Vol. 32, No. 3, pp. 371–385.
[37] Rosenbaum Peter, “Cerebral Palsy in the 21st Century: What’s New?” in: Christopher Morris and David Condie (eds.), Recent Developments in Healthcare for Cerebral Palsy: Implications and Opportunities for Orthotics (Report of a meeting held at Wolfson College, Oxford, 8–11. September 2008), International Society for Prosthetics and Orthotics, Copenhagen, 2009, pp. 25–39.
[38] Rosenbaum Peter, “Cerebral palsy: what parents and doctors want to know”, BMJ (Clinical Research Ed.), Vol. 326, No. 7396, pp. 970–974.
[39] Rosenbaum Peter, King Susanne, Law Mary, King Gillian and Evans Jan, “Family- -Centered Service: A Conceptual Framework and Research Review”, Physical & Occupational Therapy In Pediatrics, Vol. 18, No. 1, pp. 1–20.
[40] Rosenbaum Peter, Paneth Nigel, Leviton Alan, Goldstein Murray, Bax Martin, Damiano Diane, Dan Bernard and Jacobsson Bo, “A report: The definition and classification of cerebral palsy April 2006”, Developmental Medicine & Child Neurology, Vol. 49, Suppl. 109, pp. 8–14.
[41] Schenker Rony, Parush Shula, Rosenbaum Peter, Rigbi Amihai and Yochman Aviva, “Is a family‐centered initiative a family‐centered service? A case of a Conductive Education setting for children with cerebral palsy”, Child: Care, Health and Development, Vol. 42, No. 6, pp. 909–917.
[42] Stefánsdóttir Sara and Egilson Snæfrídur Thóra, “Diverging perspectives on children’s rehabilitation services: a mixed-methods study”, Scandinavian Journal of Occupational Therapy, Vol. 23, No. 5, pp. 374–382.
[43] Summers Jean Ann, Marquis Janet, Mannan Hasheem, Turnbull Ann, Fleming Kandace, Poston Denise, Wang Mian and Kupzyk Kevin, “Relationship of Perceived Adequacy of Services, Family – Professional Partnerships, and Family Quality of Life in Early Childhood Service Programmes”, International Journal of Disability, Development and Education, Vol. 54, No. 3, pp. 319–338.
[44] Taboroši Marija, Roditeljska percepcija kvaliteta usluga za decu sa smetnjama u razvoju u Srbiji, master teza, Univerzitet u Beogradu, Fakultet za specijalnu edukaciju i rehabilitaciju, 2015.
[45] Tang Hui Nee, Chong Wan Har, Goh Winnie, Chan WP and Choo Sylvia, “Evaluation of family-centered practices in the early intervention programmes for infants and young children in Singapore with Measure of Processes of Care for Service Providers and Measure of Beliefs about Participation in Family-Centered Service”, Child: Care, Health and Development, Vol. 38, No. 1, pp. 54–60.
[46] Terwiel Michelle, Alsem Mattijs, Siebes Renate, Bieleman Kim, Verhoef Marjolein and Ketelaar Marjolijn, “Family‐centered service: differences in what parents of children with cerebral palsy rate important”, Child: Care, Health and Development, Vol. 43, No. 5, pp. 663–669.
[47] van Schie Petra, Siebes Renate, Ketelaar Marjolijn and Vermeer Adri, “The measure of processes of care (MPOC): Validation of the Dutch translation”, Child: Care, Health and Development, Vol. 30, No. 5, pp. 529–539.
[48] „Zakon o socijalnoj zaštiti”, Službeni glasnik Republike Srbije, br. 24, Beograd, 2011.
[49] Žegarac Nevenka, Džamonja Ignjatović Tamara i Milanović Marko, Kada nam nedelja dolazi sredom: usluge za decu sa smetnjama u razvoju i njihove porodice, Fakultet političkih nauka i Centar za istraživanja u socijalnoj politici i socijalnom radu, Beograd, 2014.
[50] World Health Organization, ICF Checklist, Version 2.1a, Clinician Form for International Classification of Functioning, Disability and Health, World Health Organization, Geneva, 2003. Available from: http://www.who.int/classifications/icf/icfchecklist.pdf (Accessed 21 April 2016).
[51] World Health Organization, International statistical classification of diseases and related health problems (ICD10), World Health Organization, Geneva, 2004.
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