Repozitorij Medicinskog fakulteta Sveučilišta u Zagrebu

Kvaliteta života i zdravlje roditelja djece s pervazivnim razvojnim poremećajima

Benjak, Tomislav (2010) Kvaliteta života i zdravlje roditelja djece s pervazivnim razvojnim poremećajima. PhD thesis, Sveučilište u Zagrebu.

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    Croatian abstract

    Autizam se danas definira kao organski razvojni defekt mozga koji se očituje poteškoćama u društvenim interakcijama i komunikaciji te neuobičajenim ponašanjem (138, 139). Prema podacima iz literature prevalencija pervazivnog autističnog spektra bilježi stalan porast i prema izvještaju Center of Disease Control u Atalanti, SAD, (CDC) ona je 6.6 na 1000 (8). S obzirom na sve veći broj zagovornika deinstitucionalizacije i povratka osoba s teškim invaliditetima u okrilje obitelji (84-86), najnovijih smjernica o terapiji i rehabilitaciji djece sa pervazivnim razvojnim poremećajima gdje roditelji zauzimaju vrlo važno mjesto u skrbi i odgoju svoga djeteta (16-18) te činjenica da narušeno zdravlje roditelja može ugroziti kvalitetu njihove skrbi za člana obitelji s invaliditetom (23-26) ova grupa roditelja mora živjeti za njih prihvatljivom kvalitetom života i biti zadovoljavajućeg nivoa fizičkog i psihičkog zdravlja. Kvaliteta života je multidemezionalan pojam kojeg čine: životni standard, zdravlje, produktivnost, mogućnost ostvarivanja bliskih kontakata, sigurnost, pripadanja zajednici te osjećaj sigurnosti u budućnost (29). Cilj ovog istraživanja bio je utvrditi razlike u kvaliteti života, zdravstvenom statusu i morbiditetu između roditelja djece s pervazivnim razvojnim poremećajima i roditelja zdrave djece. Istraživanjem je obuhvaćeno 350 roditelja od čega 178 roditelja djece s pervazivnim razvojnim poremećajima (dijagnosticiranih pod šifrom F84 Međunarodne klasifikacije bolesti i srodnih stanja, deseta revizija) čiji je medijan starost 43 god (27-83 god). U navedenoj skupini roditelja 105 je majki (59,0%) i 73 očeva (41,0%). Kontrolnu skupinu čine 172 roditelja zdrave djece, s medijanom starosti 42 godine (24-82 god), od čega je 101 majke (58.7%) i 71 očeva (41,3%). Većina ispitanika u obje skupine su u braku, iako je veći broj samohranih roditelja u skupini roditelja djece s pervazivnim razvojnim poremećajima (11,2%), u usporedbi sa 9,3% iz skupine roditelja zdrave djece. Dobiveni rezultati ukazuju da roditelji djece s pervazivnim razvojnim poremećajima imaju statistički značajno nižu subjektivnu kvalitetu života (p <0,001) u odnosu na roditelje zdrave djece i to u svim domenama kvalitete života kao i u njezinom ukupnom indeksu te da su lošije samoprocjene zdravlja u svim dimenzijama zdravlja, osim u fizičkom zdravlju u odnosu na kontrolnu skupinu roditelja. 41% roditelja djece s pervazivnim razvojnim poremećajima, te 30.2% roditelja zdrave djece, izjavilo je da boluje od neke kronične bolesti, s time da je najveća razlika u navođenju zabilježena u skupini psiholoških poremećaja (F00-F99 MKB-10 šifra grupe). 11% roditelja djece s pervazivnim razvojnim poremećajima pati od bolesti iz navedene skupine, što je 6,7% više od roditelja zdrave djece. Usprkos svim gornjim činjenicama, 38% roditelja djece s pervazivnim razvojnim poremećajima zadržava subjektivnu kvalitetu života u rasponima za opću hrvatsku populaciju ili čak višu, što upućuje na moguću otpornost na postojeću situaciju. Regresijska analiza je pokazala da je zadovoljstvo postignućima u životu, međuljudski odnosi te sigurnost u budućnost statistički značajni faktori koji utječu na održavanje subjektivne kvalitete života u rasponima uobičajenim za opću populaciju. Pogotovo je zanimljiv podatak da 71% roditelja djece s pervazivnim razvojnim poremećajima smatra da bi promjene političke situacije, u pogledu koji je važan za njih i njihovu djecu, doprinijele njihovoj situaciji i kvaliteti života, ili čak poboljšale iste s time da najveći broj njih smatra da bi poboljšanje financijske situacije njihove obitelji; unapređenje dijagnostike, terapije i rehabilitacije osoba s pervazivnim razvojnim poremećajima te potreba za većim brojem ustanova i unapređenje kvalitete postojećih imalo najveći utjecaj na unapređenje kvalitete njihovog življenja. S obzirom na limitiranosti studije, navedene u tekstu, ovo istraživanje može poslužiti kao početak budućih istraživanja o roditeljima djece s pervazivnim razvojnim poremećajima. Istraživanja bi se moglo kontinuirano provoditi u okviru Nacionalne strategije za osobe s invaliditetom, a rezultate koristiti za stalno unapređenje blagostanja tog posebice vulnerabilnog dijela populacije. Pri tome bi trebalo napraviti moguće preinake legislative koje bi omogućile pristup ispitanicima putem Registra osoba s invaliditetom. Takav način bi omogućio formiranje slučajnog uzorka što bi pridonijelo reprezentativnosti uzorka i kvaliteti istraživanja.

    English abstract

    Autism is defined as an organic brain defect development manifested difficulties in social interaction and communication, and unusual behaviors (138, 139). According to data from the literature prevalence of autistic spectrum disorders has rise and in a report by Center of Disease Control in Atalanta, USA (CDC) it was 6.6 per 1,000 (8). Given the growing number of advocates of deinstitutionalization and the return of persons with severe disabilities in the family (84-86), recent guidelines on treatment and rehabilitation of children with pervasive developmental disorder where parents take a very important role in the care and upbringing of their children (16-18) and the fact that impaired the health of parents can affect their quality of care for family members with disabilities (23-26), this group of parents must live with acceptable quality of life and satisfactory level of physical and mental health. Quality of life is multidimensional term, which consists of: Standard of Living, Personal Health, Achieving in Life, Personal Relationships, Personal Safety and Community-Connectedness (29). The aim of this study was to determine differences in quality of life, health status and morbidity among parents of children with pervasive developmental disorders and parents of healthy children. The study included 350 parents of which 178 parents of children with pervasive developmental disorders (diagnosed by code F84 International Classification of diseases and related conditions, tenth revision) with a median age of 43 yr (27-83 yr). In this group of parents was 105 mothers (59.0%) and 73 fathers (41.0%). The control group consists of 172 parents of healthy children, median age 42 years (24-82 years), of which the 101 mothers (58.7%) and 71 fathers (41.3%). Most respondents in both groups were married, although an increasing number of single parents in the group of parents of children with pervasive developmental disorders (11.2%), compared with 9.3% of a group of parents of healthy children. The obtained results indicate that parents of children with pervasive developmental disorders have a significantly lower subjective quality of life (p <0.001) compared to parents of healthy children in all domains of quality of life as well as its overall index and to have poorer self perceived-health in all dimensions of health except in physical health compared to the control group parents. 41% of parents of children with pervasive developmental disorders, and 30.2% of parents of healthy children, said that he suffers from a chronic disease, with the biggest difference in the group of psychological disorders (F00-F99 ICD-10 code groups). 11% of parents of children with pervasive developmental disorders suffer from a disease of the that group, which is 6.7% more than parents of healthy children. Despite all the above facts, 38% of parents of children with pervasive developmental disorders maintain the subjective quality of life in the ranges of the Croatian general population or even higher, what suggesting a possible resistance to the existing situation. Regression analysis showed that satisfaction with the achievements in life, interpersonal relationships and safety in the future are statistically significant factors affecting the maintenance of subjective quality of life in the normal ranges for the general population. Especially interesting is the fact that 71% of parents of children with pervasive developmental disorders is considered to change the political situation in that respect is important for them and their children contributed to their situation and quality of life, or even improve with the same time that most of them (20%) believe that improving the financial situation of their families; improving diagnosis, therapy and rehabilitation of persons with pervasive developmental disorders and the need for a large number of institutions and improving the quality of existing, had the greatest impact on improving the quality of their life. Given the limitation of the study, above mentioned, this research can serve as the beginning of future research on parents of children with pervasive developmental disorders. Research could be carried out continuously in the National Strategy for Persons with Disabilities, and the results used to continually improve the wellbeing of this particular vulnerable population. When it should be possible to make modifications to legislation that would allow access to the subjects through a register of people with disabilities. Such a method would allow the formation of a random sample, which would contribute to the representativeness of the sample and the quality of research.

    Item Type: Thesis (PhD)
    Mentor: Vuletić Mavrinac, Gorka
    Divisions: Izvan medicinskog fakulteta
    Depositing User: Marijan Šember
    University: Sveučilište u Zagrebu
    Institution: Medicinski fakultet
    Number of Pages: 123
    Status: Unpublished
    Creators:
    CreatorsEmail
    Benjak, Tomislav
    Date: 09 June 2010
    Date Deposited: 14 Oct 2010
    Last Modified: 23 Sep 2011 18:11
    Subjects: /
    Related URLs:
      URI: http://medlib.mef.hr/id/eprint/852

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