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- Nowak, Herawati I., 1976, et al.
(författare)
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Children with disability and their participation in the planning and evaluation of support – parents and professionals descriptions
- 2013
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Ingår i: NNDR2013 – 12 th Research Conference Nordic Network of Disability Research Abstract book.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Although in general participation among children is increasing, children with disability are less likely to participate in decision-making processes than non-disabled children. The purpose of this paper is to present parents’ and professionals’ descriptions of how and to what extent children with disabilities are offered possibilities to participate in the planning and evaluation of the support given by different agencies in three Swedish municipalities. One hundred forty-four parents (from 109 families) of children with disabilities who were eligible for services, participated in a structured telephone interview. In the same districts 200 professionals employed by the municipalities, schools and healthcare services answered a web based survey about their work, perceptions about support available to parents of children with disability and collaboration with other actors. There were differences across child age groups in the parents’ reported level of child participation in planning and decision making. Parents of teenagers reported higher child participation than parents of school children, who in turn reported higher child participation than parents of preschoolers. Differences were also found between child age groups on professionals’ usage of direct communication. Professionals reported using direct communication in planning of support with teenagers more often than with school children and preschoolers. Our results lead us to suggest that professionals who work with children with disability need an increased awareness and understanding of children’s participation in decision-making.
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| 3. |
- Nowak, Herawati I., 1976
(författare)
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Disability Policy in Paractice: Perception of received support and child participation
- 2015
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Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Since the 1980’s institutions for children with disabilities in Sweden no longer exist. As other children, children with disabilities have the right to live with their family at home. Caring for and parenting a child with a disability, however, can be more demanding than caring for and parenting a child without disability. Due to the extra demands, parents of children with disabilities, therefore, need to be supported. In Swe-den, there are laws, regulation, and policies, such as the Act concerning Support and Services for persons with certain impairments, which regulate support for children with disabilities and their parents. The overall aim of the present thesis is to investigate how interna-tional (UN conventions) and Swedish laws, regulations, and policies are manifested in everyday experiences of parents of children with disabilities. The present thesis discusses three different ways to under-stand disability referred to as: the medical, the social and relational model. These models are considered useful as they show how different perspectives of disability affect the way we view the needs of children with disabilities and their parents in practice. Bronfenbrenner’s ecolog-ical systems theory is also used as a framework in the thesis. This theo-ry gives an overall picture of how the relationships between children with disabilities, their parents, and professionals are affected by the laws, regulations, and policies for support for children with disabilities and their parents. Furthermore, the concept of social capital is used to get a deeper understanding of the importance and function of support in everyday life. The aim of Study I was to explore parents’ experience of the re-ceived support. In Study I, semi-structured interviews were conducted with six parents of children with intellectual disabilities (five mothers and one father), in the Western region of Sweden. Thematic analysis was used to capture parents’ experience and perceptions. Three catego-ries were identified in all interviews: 1) Information of diagnosis and services, 2) accessibility of support and services, and 3) quality of sup-port and services. The aim of Study II was to investigate professionals’ and parents’: 1) ratings of the opportunities available to children with disabilities to participate in planning, decision-making, and evaluation of support, and 2) satisfaction with current level of such participation. In Study II, 144 parents of children with disabilities went through a structured interview conducted by telephone. Additionally, 228 professionals, who worked in organization providing support services for children with disabilities and their parents, completed a web-based questionnaire. Most professionals indicated they were able to meet with children directly, but relied more on parents’ descriptions of the child’s needs and opinions of support services than on direct commu-nication with the child. Both parents and professionals rated children’s opportunities to participate as limited, but the participation increased with the child’s age. The results from the two studies show how the international and Swedish national disability policy is manifested in and affect the par-ents' experiences of having a child with disabilities. The existing laws, regulations, and policies governing the right to support can affect the interaction between parents and professionals and parents everyday life. They can also enhance or restrict the parents and even the chil-dren's social capital.
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| 4. |
- Nowak, Herawati I., 1976, et al.
(författare)
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Opportunity to participate in planning and evaluation of support for children with disabilities: parents’ and professionals’ perspectives
- 2020
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Ingår i: Journal of Intellectual Disabilities. - : SAGE Publications. - 1744-6295 .- 1744-6309. ; 24:1
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Tidskriftsartikel (refereegranskat)abstract
- A random sample of parents of children with disabilities (N=144) from three Swedish municipalities participated in a structured telephone interview including seven questions on child participation and 156 professionals from the same municipalities completed a web-based survey including six questions on child participation. The aim of the study was to explore parents’ and professionals’ 1) ratings of the opportunities available to children with disabilities to participate in planning, decision-making, and evaluation of support, and 2) satisfaction with the children’s current level of such participation. The results indicated that opportunities for children with disability to participate directly in decision-making processes were limited. Parents and professionals rated older children’s opportunities to participate as better compared to younger. Most professionals relied more on parents’ descriptions of the child’s needs and opinions of support services than on direct communication with the child.
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| 5. |
- Nowak, Herawati I., 1976, et al.
(författare)
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Parents’ experience of support in Sweden: Its availability, accessibility, and quality
- 2013
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Ingår i: Journal of Intellectual Disabilities. - : SAGE Publications. - 1744-6295 .- 1744-6309. ; 17:2, s. 134-144
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Tidskriftsartikel (refereegranskat)abstract
- Semi-structured interviews were conducted with six parents of children with intellectual disabilities, in the Western region of Sweden. The aim of the study was to explore and to gain a deeper understanding of parents’ experiences of received support for them and their children with intellectual disabilities. We focused particularly on their experiences of the availability, accessibility, and the quality of services. Parents in this study were unsure about what the diagnosis meant specifically for their child as well as for their whole family. Moreover, the parents experienced great difficulty in obtaining information about available services, which resulted in feelings of helplessness to some. Parents also reported that although services are available, they were not easily accessible. Lastly, parents felt that the quality of care and support were to some extent inadequate, as no attention was paid by professionals to their actual needs or wishes.
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| 6. |
- Nowak, Herawati I., 1976
(författare)
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Parents of Children with Developmental Disabilities and Their Experiences of Formal Support
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The aim of this thesis was to investigate how UN conventions, national laws, regulations, and policies are manifested in everyday experiences of parents of children with disabilities. The specific aims of this thesis are to 1) investigate how parents of children with developmental disabilities experience their parenthood and received formal support, 2) investigate how parents and professionals experience the opportunity for children with disabilities to participate in decision-making process, 3) describe how individual factors (parental gender and country of origin as well as the child’s diagnosis and age) contribute to parents’ experience of their subjective need and experience of support during the course of childhood (age span in all the studies 1-20 years). Study I explored parents’ experience of the received support through a semi-structured interview with six parents of children with intellectual disabilities in the Western region of Sweden. Parents reported difficulty in finding and obtaining information about and accessing available support. In Study II and III, parents of children with disabilities participated in a structured telephone interview. Study II aimed to explore the perception of needs for formal support and the actual received support in parents of children with disabilities in Sweden. The focus of the study concerns parenting and emotional support and factors related to parents’ perception of support needs. Parents experienced that they had not received the support that they needed regarding information about their child’s rights and available existing support. Parents also reported that their need for support for stress management and for individual counselling had not been fulfilled. Parents’ needs for formal parenting and emotional support were related to the gender of the parent and their country of origin. Study III investigated professionals’ and parents’ ratings of the opportunities available to children with disabilities to participate in planning, decision-making, and evaluation of support, and parental satisfaction with current level of such child-participation. Most professionals indicated that they were able to meet with children directly, but relied more on parents’ descriptions of the child’s needs and opinions of support services than on direct communication with the child. Both parents and professionals rated children’s opportunities to participate as limited, but the participation increased with age. Study IV investigated parents’ who have young adult children with severe physical disabilities and attended a special upper secondary school program. The study specifically looked at their reflections of everyday life and their experience of parenthood during and after their young adult child attended the special upper secondary school program. Parents’ experiences of parenthood were related to their youth’s capacities and environment. The environmental factors, however, played a significant role in the ways parents perceived their young adult children’s future. Overall results from the studies show norms, rules, and regulations in regard to support services provide children with disabilities and their parents opportunities to apply for support services, giving them a chance to participate in the community, and to live as others in accordance with the UNCRC and UNCRPD. However, these support services are not equally accessible by all children with disabilities and their parents. Laws, regulations, and policies governing the right to support do not provide assurance that parents would be receiving the support that they need. The studies also show that plenty of work still needs to be done in implementing disability policy in Sweden.
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