|Sažetak (engleski)|| |
Modern science has proven the exceptional potential of early childhood, which indicates the need for special care for children, especially when developmental disabilities are identified early or a neurodevelopmental risk for their development is determined (Ljubešić, 2012). This potential of early childhood is extremely important for gaining early experience and the development of the brain as a whole (Joković-Turalija & Pajca, 1999; according to Košićek, et al., 2009).
Early childhood intervention includes a wide range of procedures, from childbirth to school, with the aim of improving children's health and well-being, their competencies, minimizing developmental disabilities, mitigating existing difficulties, preventing functional deterioration, promoting adaptive parenting and improving family functioning (Pinjatela & Joković Oreb, 2010). This includes providing support to families (children, their parents and other family members), informing, rehabilitation and counseling (Košićek et al., 2009), in terms of solving problems related to medical care, education, family and social issues.
The modern understanding of early intervention takes into account the procedures aimed at the child and the family on its adaptation to the new situation and the procedures for optimal encouragement of child development (Milić Babić et al., 2013). It focuses on close and quality interactions between families and professionals in planning and implementing support. Experts encourage families to make decisions about support services based on parenting opportunities and priorities in everyday life (Summers et al., 2005; Brotherson et al., 2008; Lee, 2015).
Support systems can be as informal as those offered in everyday family-friend environments, or as formal as the support systems provided by the health, education, social welfare, justice and others. Informal forms of support relate to a network of friends, family and widely available information (media, literature, internet) and are based on solidarity and emotional connection and complement institutionalized services (Žganec, 1995; Wall et al., 2001). Formal forms refer to a network of professionals and public policies / laws in society that should respond effectively and timely to the needs of parents (Redmond et al., 2002), and is defined as a relationship with professionals in which the expert helps the parent based on education and experience (Jones et al., 2009).
Formal - professional support is important because it gives parents the opportunity to empower in targeted areas of life, as well as support for the development and maintenance of personal capacities in overcoming the stresses they have in daily care, care and upbringing of their child, which, in addition to the usual development tasks, also has developmental disabilities (Wallander &Varni, 1998). If it’s quality and relevant, formal - professional support increases the resilience of the whole family for overcoming the challenges posed by the child's developmental disabilities (Schembri & Abela, 2016).
Early support to parents should be provided by various systems in society: educational, health and social systems and cooperation with other participants within the community such as associations and religious communities and other participants in the development of a particular local community (Leutar & Oršulić 2015).
Social support for parenting implies the availability of resources in the environment to provide support to parents in everyday life and crisis situations (Dobrotić & Laklija, 2012). Leutar et al. (2008) state that the available social support is especially important for the parents of a child with health problems precisely because of frequent visits to doctors, demanding treatment and rehabilitation processes and meeting the child's needs through daily activities.
The need for information is most pronounced need for support from parents of children with disabilities. The Standards for the Quality of Social Services in social care (Ministry of Health and Social Welfare, 2010) include the availability of information as the first quality standard. Integration and coordination of services and professionals from health, education, social care are critical to effective service provision (Underwood & Frankel, 2012). Coordination of services is defined as a set of activities carried out by a service coordinator, which enable the child and his family to exercise their rights and access the necessary early intervention services (Bruder, 2005). This includes coordinating all services the child receives and making contacts to help the family facilitate support and access to services (Dunst & Bruder, 2002; Alliston, 2007; Chang, 2007; Spittle et al., 2012). Good coordination and cooperation of professionals has the effect of better access to services for parents (Iversen et al., 2003), better flow of information needed by parents (Scarborough et al., 2004; Moeller, 2007), improved quality of services provided (Spittle et al., 2012), better parent-professional relationships (Franz, 2000) and has a positive impact on familys quality of life (Dunst & Trivette, 1997; Epley et al., 2010).
Transdisciplinarity also plays an important role as a model of teamwork, and aims to simplify and speed up the process of obtaining appropriate support for children and families. Parents are participants who present themselves as partners to experts in the process of providing early support (Milić Babić et al., 2013) and complement interdisciplinarity and transdisciplinarity with daily active child care and parental care. Analyzing the context of interdisciplinarity and transdisciplinarity within the early intervention system, it is necessary to identify all persons involved in early childhood development and encourage active participation (Ivšac Pavliša, 2010; Ljubešić, 2012).
If parents do not receive adequate support from professionals, they rely on themselves or other parents with the same problems, in terms of informing about the child's health, rights of the child and family, referring parents to appropriate support services. Iversen et al. (2003) point out that parents of children with disabilities express the need to be better informed about the support systems offered in the community, including teamwork with the child.
Parents involved in the early support system are more satisfied with their role as parents and at the same time more satisfied with the support system. Research shows that parents want clear and useful information from professionals and work with parents on self-confidence in their own ability to cope with parenting challenges (Iversen et al., 2003; Bailey et al., 2004).
All professionals can enable parents to be accepted as equal participants in the implementation of support services, because the role of experts in working with parents is an important and valuable resource of social support, which can reduce family stress (Leutar & Štambuk, 2007). Protective factors in parents' adaptation to the child's developmental disabilities are understanding and support of the environment, quality of professional care and use of more effective coping strategies (Denona & Batinić, 2002; according to Leutar & Štambuk, 2007). Hanson et al. (2000) report that experts in early intervention programs play a key role in guiding the family by providing information, organizing meetings, and facilitating communication between different institutions. Korfmacher et al. (2008) state that there is very little research on the characteristics of professionals that affect the level of family involvement in an early intervention program and highlight 4 characteristics: education of professionals, appropriate early intervention program, appropriate combination of users and providers and supervision.
The presented research deals with the system of early support services, data on information, satisfaction and expectations of professionals from early and preschool education institutions,
associations for early development and support of children with disabilities, health institutions and Centers for Social Welfare and parents who are participated in the research in Brod-Posavina and Istria counties.
At the level of the Republic of Croatia, the availability and quality of early support services is different, given the development of individual regions. This research will present the above through a comparison of two counties, of which Brod-Posavina county is at a lower level, and Istria county at a higher level of development. Data on regional differences by counties according to GDP, unemployment rate, average net salary are presented, which indicate the difference between Brod-Posavina and Istria counties. Although there are positive developments in the regional development of Brod-Posavina county, Istria county is still economically more advanced. Given that the availability and quality of early support services is most prevalent in the City of Zagreb, it was interesting to examine the situation of early support services in the other two counties with regard to their development.
One of the bigger problems is the insufficient informing of parents and professionals about support services, which creates additional concerns for parents and some parents do not find out about support services on time, which calls into question their success. The contribution of the research is that the obtained data will document the amount and availability of existing support services for children with disabilities, from birth to starting school, satisfaction of families and professionals with support services and will provide guidelines for improving early support services in these two counties.
The aim of this research was to determine the information, satisfaction and expectations of parents and professionals in the system of support services for children with disabilities and their families in Brod-Posavina and Istria counties, of which Brod-Posavina County is lower and Istria County is higher.
In accordance with the objective, the following research problems were set:
1. To determine the perception of parents of children with disabilities about source and way of informing, level and importance of support for children with disabilities and their families.
2. To determine the information of parents of children with disabilities with the early support services for children with disabilities in early and preschool age and their families with regard to socio-demographic characteristics.
3. To determine the satisfaction of parents of children with disabilities with the early support services for children with disabilities in early and preschool age and their families with regard to socio-demographic characteristics.
4. To determine the expectations of parents of children with disabilities with the early support services for children with disabilities in early and preschool age and their families with regard to socio-demographic characteristics.
5. To determine the information of professionals with the early support services for children with disabilities in early and preschool age and their families with regard to socio-demographic characteristics, self-assessment of education for working with children with disabilities and self-assessment of knowledge about children with disabilities.
6. To determine the satisfaction of professionals with the early support services for children with disabilities in early and preschool age and their families with regard to socio-demographic characteristics, self-assessment of education for working with children with disabilities and self-assessment of knowledge about children with disabilities.
7. To determine the expectations of experts on the contribution of parents, co-workers, institutions and social policy actors to the quality of the implementation of early support services.
The sample includes 152 participants (parents of children with disabilities from birth to starting school) and 82 participants (experts in the field of health, social care and early and preschool education from Brod-Posavina and Istria counties).
Two measuring instruments designed for the purpose of this research were used (Šarčević Ivić-Hofman, Wagner Jakab & Kiš-Glavaš, 2015). One questionnaire is intended for parents of children with disabilities, the other is intended for professionals working with children with disabilities and their families. The questionnaires collected data on the socio-demographic characteristics of the respondents and examined their information, expectations and satisfaction with support services for children with disabilities and their families.
Based on the descriptive data obtained, it can be concluded that there are no major differences between the two counties, but the results provide a source of information on early support services. Data on receiving formal support show that most children with disabilities are included in some forms of support, which is in favor of the Istria county, where according to the data all children from the research are included in various early support services. It is a positive fact that parents know and use the services of counseling pediatricians from the health center and
the inclusion of children in kindergarten. There are some minor differences, such as the number of professionals represented in the workplace, the experience of working with children and the training offered to professionals related to working with children with disabilities. In Brod-Posavina county there are more experts employed in health care institutions, while in Istria the number of employees in the field of health and education is almost equal. Differences can also be seen in the experience of working with children with disabilities, so experts from Brod-Posavina county show that they have more experience in working with children with deafblindness than experts from Istria county. It is also interesting to note that a smaller number of experts from Istria county believe that training is insufficient, so it can be assumed that in Istria county offers more training for experts in this field than in Brod-Posavina county.
A) Awareness of parents of children with disabilities about early support services
Parents stated the ways of informing about support services and the largest part of parents (f = 115, 75.7%) stated a visit to an expert as the most common way of informing. Children born with neurorisk were referred to neuropediatricians and pediatricians, and since deviations in motor development are most noticeable, it is also understandable that children were referred to both a physiatrist and a physiotherapist.
The results of the regression analysis showed that the only statistically significant, positive predictor of parental information was the level of education, i. e. parents who had higher education were also better informed (ß = .25, p = <.01).
B) Satisfaction of parents of children with disabilities about early support services
This research shows that most parents are satisfied with the services offered by the kindergarten, from the inclusion of children with disabilities (82,2%) and the services of experts offered in the kindergarten, namely: counseling support of educators (77%), educational rehabilitator (59,9%), speech therapist (48%), psychologist (42,8%). Also, the individual work of educational rehabilitator/speech therapist can be singled out (67,8%). When it comes to services in health care institutions, most parents assessed satisfaction with the pediatric counseling support in the health center (71,7%), and when it comes to services from social care centers, most parents assessed satisfaction with social worker services (41,4%).
The results of the regression analysis show that none of the variables showed a statistically significant predictor of satisfaction, i. e. the extent to which parents are satisfied with the service they use.
Also, the results of regression analysis show that no variable proved to be a statistically significant predictor of parental satisfaction with the quality of relationships with professionals.
C) Expectations of parents of children with disabilities about early support services
Some socio-demographic characteristics are statistically significantly related to expectations of formal support, such as education level and financial situation. Parents with higher education are more likely to expect formal support in relation to timely communication of the diagnosis, while parents with lower education mostly expect formal support in relation to informing about the rights of the child and family and ways to achieve them. Parents who have great financial difficulties expect mostly formal support in the form of information about the rights of the child and family and ways to achieve them.
D) Awareness of professionals on early support services
The results showed how much professionals know about early support services and which early support services they refer to parents of children with disabilities.
The largest percentage of professionals know the services of counseling support of pediatricians in the health center (95,1%) and inclusion of the children with disabilities in the kindergarten (91,5%). The results of the regression analysis show that no variable showed a statistically significant predictor of information.
E) Professional’s satisfaction with early support services
This study shows that professionals out of the services of the education system are satisfied with the services offered by the kindergarten, from the inclusion of children with disabilities (80,5%) and the services of professional’s offered in the kindergarten, which are: counseling support of educators (78,0%), psychologists (61,0%), educational rehabilitators (56,1%), speech therapists and pedagogues (51,2%). Of the services from health institutions, most professionals assess satisfaction with the advisory support of a pediatrician in a health center (85,4%), followed
by treatment by an educational rehabilitator and / or speech therapist (61%), treatment by a psychologist (56.1%), early intervention in the maternity ward (52,4%), treatment by a physiotherapist (50%), treatment by a psychiatrist (47,6%), treatment by an occupational therapist (34,1%).
Regarding services from the social care center, most professionals assessed satisfaction with the work of social workers (51,2%), followed by lawyers (39%), psychologists (34,1%) and only then social pedagogues (22%) from social care centers.
The results of the regression analysis show that no variable showed a statistically significant predictor of satisfaction (ratio of information and satisfaction of professionals).
The results show that self-assessment of knowledge about children with disabilities is a significant predictor of satisfaction with the professional role (ß = .47, p < .01) and satisfaction of professionals with support (ß = .34, p < .01). Professionals who self-assess their knowledge as greater are more satisfied with their professional role and support.
F) Professional’s expectations from early support services
Professionals have assessed what they expect from parents, other professionals, institutions (health, social and educational institutions) and social policy actors (Ministry of Health, Ministry of Labor, Pensions, Family and Social Policy, Ministry of Science and Education) to ensure early care support services were of the highest quality.
The results show that the most important thing for professionals is the cooperation of parents with professionals for the purpose of the child's progress, providing understandable information to parents by experts, trust and honesty and better information about early support services and the rights of children with disabilities.
Furthermore, professionals expect from institutions to provide professional support by various professionals, and from social policy actors to provide an effective system of support services from the very birth of a child and equalize the availability of institutions, professionals and services in large urban and small communities.
The research provided guidelines on what could be improved in the early support system, what barriers both parents and professionals should consider, and how to reduce or mitigate them. Obstacles encountered by professionals in their work are insufficient number of experts (72%), overcrowding of experts (72%), lack of support services in the place of residence (61%), long
waiting lists for services (51,2%), insufficient cooperation and networking between professionals and institutions (46,3%), lack of investment in support services (43,9%), poor coordination of service providers (30,5%), poor education of professionals (22%), lack of evaluation of the quality and effectiveness of support services (22%) and the financial situation of parents (1,2%).
Parents stated the reasons for not using early support services, such as the lack of support services in the local community, lack of knowledge of the service and the lack of need for support services. For these reasons, it is very important to inform parents of children with disabilities about community-based early support services and the professionals who provide these services, so that children can enter the early support system properly.
According to the results on informing, satisfaction and expectations of parents of children with disabilities and professionals on early support services, it is evident that early support services should be available in the local community.
Future research should try to include other counties in the Republic of Croatia and include other parameters, such as stress level, experience of parental competence and parental stress, and some characteristics of the professionals who provide formal support (efficiency - how much and how experts experience early support services to be efficient; personal impact - how and to what extent participants can influence the quality of early support services).
The data collected is a useful source of information on informing, satisfaction and expectations about early support services from both parents and professionals.