Snaefridur Egilson - Academia.edu (original) (raw)
Papers by Snaefridur Egilson
Tímarit um uppeldi og menntun, Jan 7, 2022
Journal of Occupational Science, Jan 2, 2021
ABSTRACT Moving between places in the community, or community mobility, is both an occupation and... more ABSTRACT Moving between places in the community, or community mobility, is both an occupation and a means to other occupations. In order to move around and participate in society, people with mobility impairments need modifications as they encounter multiple barriers in their everyday lives. This discussion paper makes recommendations for policy development, especially as it relates to accessibility and transportation services for disabled people. This work highlights aspects that need to be incorporated into policy making to support community mobility for people with mobility impairments: (1) Incorporation of occupational values; (2) Participatory policy making; (3) Consistency and transparency in policy documents; and (4) Comprehensive monitoring system. The recommendations are discussed and reflected upon in the light of human rights, occupational science, and the Capabilities Approach. This paper highlights issues that arise at the system level and how limitations of policies and their implementation can lead to multiple capability failures and violations of human rights – such as the difficulties people with mobility impairments face if society fails to provide the necessary means to support their community mobility – and the various ways that situation may affect their other chosen occupations.
The School Setting Interview (SSI) was developed to examine the level of studentenvironment fit o... more The School Setting Interview (SSI) was developed to examine the level of studentenvironment fit of students with physical disabilities and facilitate the planning of occupational therapy interventions in school. The SSI is specifically developed for students with physical disabilities who have some type of motor dysfunction, although it has relevance and can be used for students with other types of disabilities. It is a client-centred assessment intended for students from approximately 10 years of age and older. The SSI includes 16 items (i.e. questions) concerning everyday school activities where students with disabilities may need adjustments to be able to participate. Each item is scored using a four-step rating scale that enables the student and the therapist to jointly decide the level of studentenvironment fit.
Bedomning av anpassningar i skolmiljon (BAS) ar ett bedomningsinstrument som utvecklats i Sverige... more Bedomning av anpassningar i skolmiljon (BAS) ar ett bedomningsinstrument som utvecklats i Sverige for att anvandas inom skola. Det ar avsett for barn fran ungefar 7 ar och aldre. Anvandare av instr ...
Manga elever i dagens svenska skola ar i behov av anpassningar och sarskilt stod. For att ratt in... more Manga elever i dagens svenska skola ar i behov av anpassningar och sarskilt stod. For att ratt insatser ska kunna planeras och genomforas ar det viktigt att elevernas behov upptacks och kartlaggs p ...
Childhood and Disability in the Nordic Countries
Historically, studies on disabled children have been characterized by narrow and limited ways of ... more Historically, studies on disabled children have been characterized by narrow and limited ways of looking at their lives. Some historians have even characterized the study of childhood and disability as ‘a legacy of neglect’ (Safford & Safford, 1996, p. 1). When researchers have included disabled children they have typically been preoccupied with impairment, vulnerability, service use and the ‘burden’ of presumed dependency, at the expense of a more nuanced account of their everyday lives and identities (Avery, 1999; Davis, 2004; Shakespeare & Watson, 1998). The voices of the children themselves have frequently been excluded and research has, instead, highlighted the perspectives of parents and professionals. The result is that, until relatively recently, the lives of disabled children and youth have largely been seen through the eyes of adults. Over the past decades, however, there has been a notable increase in research that includes the views and perspectives of disabled children and youth, providing new insights and understandings of their lives and experiences (Asbjornslett et al., 2013; Connors & Stalker, 2003; Egilson, 2014; Egilson & Hemmingsson, 2009; Einarsdottir, 2007; Stalker, 2012; Watson et al., 1999; Ytterhus, 2012). This development has coincided with and been inspired by new approaches to the social studies of childhood (James & Prout, 1997), the emphasis on social and cultural understanding of disability within disability studies (Shakespeare, 2013) and a growing human rights perspective with regard to both children and disabled people.
Acknowledgements First of all we would like to thank all the disabled children and youth, and the... more Acknowledgements First of all we would like to thank all the disabled children and youth, and their families who took part in the various research projects presented in this book. We also thank all our Nordic colleagues who contributed to the book. We are grateful for their scholarly collaboration as well as their friendship, positive attitudes and patience throughout this project. Thorvaldur Kristinsson assisted with the copy-editing of the manuscript and Ian Watson and James Rice were invaluable as English language editors.
Tímarit um uppeldi og menntun, 2020
Tilgangur rannsóknarinnar var að kanna hvernig innflytjendafjölskyldur sem eigafötluð börn takast... more Tilgangur rannsóknarinnar var að kanna hvernig innflytjendafjölskyldur sem eigafötluð börn takast á við daglegt líf hér á landi, samskipti þeirra við nærsamfélagið ogþjónustukerfin sem ætlað er að styðja fjölskyldur fatlaðra barna. Rannsóknarsniðiðvar eigindlegt og byggðist á viðtölum við foreldra og þátttökuathugunum á heimilumþeirra. Tólf innflytjendafjölskyldur tóku þátt í rannsókninni. Þær höfðu dvalið áÍslandi allt frá 18 mánuðum til 20 ára og áttu samtals 16 fötluð börn. Reynsla fólksinsvar margþætt og breytileg en staða margra fjölskyldna var erfið, þær stóðu einar oghöfðu lítið stuðningsnet. Þótt samanburðurinn við upprunalandið væri hugsanlegahagstæður gat reynst erfitt að takast á við og samþætta viðfangsefni daglegs lífs.Óvissa í húsnæðismálum, atvinnumálum og fjármálum mótaði líf margra. Tungumálakunnátta,tryggur fjárhagur, öruggt húsnæði og viðeigandi stuðningur réðmestu um það hvernig fjölskyldunum farnaðist í nýju landi. Mikilvægt er að hugaað samskiptum og upplýsinga...
Scandinavian Journal of Occupational Therapy, Nov 2, 2015
Background: Family-centred ideology is increasingly regarded as a conceptual foundation in servic... more Background: Family-centred ideology is increasingly regarded as a conceptual foundation in services to children with disabilities. Objective: First, to examine the extent to which parents and therapists perceive the service as family-centred; second, to explore factors affecting parents' perceptions of the service; and third, to explore how parents understood service aspects typically characterising family-centred services (FCS), such as the goal-setting process. Material and methods: Parents of 236 children and 25 therapists completed questionnaires (MPOC-32; MPOC-SP). Five parents shared their experiences in an open interview. Results: On average parents and professionals consider the service to be family-centred from a 'fairly great' extent (Respectful and Supportive Care/Treating People Respectfully) to a 'small' extent (Providing General Information). Parents' experiences were influenced by their child's age, functional performance, and type of disability. Analysis of interview data revealed three categories: Experiencing trust and respect, Collaborating or just following instructions?, and Balancing therapy with daily activities. Conclusion: Parents praise interpersonal relations but lack of information limits their possibilities to make informed choices about services. In order to translate better into the daily life of the family the intervention should focus more on their activities, routines and participation within the communities they live in.
Scandinavian Journal of Disability Research, 2020
Disability studies and migrant studies have largely operated on different tracks. Despite the gro... more Disability studies and migrant studies have largely operated on different tracks. Despite the growing diversity within Icelandic society, little is known about the lives of migrant families with disabled children living there. Inspired by critical disability studies, migrant studies and Bourdieu's concepts of capital and field, we focused on the daily experiences of three migrant mothers of disabled children and their encounters with the Icelandic service system. The migrant women's experiences reflected their diverse positions and needs in terms of their participation and possibilities to use their resources to build upon and apply their social and cultural capital. Initially, all three intended to stay temporarily in Iceland, but the intersection of the birth of their disabled children, their possibilities for balancing work and care, as well as their experiences with the service system, ultimately affected their decision to stay or leave. The paper concludes with a call for a more nuanced understanding of the intersection between disability and migration in family lives.
ABSTRACT Markmið rannsóknarinnar var að kanna viðhorf foreldra barna með hreyfihömlun til þjónust... more ABSTRACT Markmið rannsóknarinnar var að kanna viðhorf foreldra barna með hreyfihömlun til þjónustu iðjuþjálfa og sjúkraþjálfara. Rannsóknin var unnin samkvæmt eigindlegri hefð. Gögnum var safnað með opnum viðtölum við 17 foreldra (14 mæður og þrjá feður) barna í 1.-7. bekk grunnskóla. Börnin og fjölskyldur þeirra höfðu notið þjónustu iðjuþjálfa og sjúkraþjálfara frá unga aldri. Gagnagreining byggði á grundaðri kenningu. Niðurstöður: Foreldrar töldu þjónustu iðjuþjálfa og sjúkraþjálfara mikilvæga en breytilega, háða því hvaða einstaklingur sinnti málum hverju sinni. Skortur á skýrum viðmiðum og samræmdu vinnulagi varð til þess að einstaklingsbundnir þættir í fari þjálfara skiptu miklu. Fram kom sterk ósk um fjölskyldumiðaða þjónustu með breytilegar þarfir barns og fjölskyldu að leiðarljósi. Einnig að þjálfarar hugi vel að aðstæðum barnanna og taki virka ábyrgð í að samhæfa upplýsingar og þjónustu. Flestir foreldrar óskuðu eftir gagnkvæmri virðingu, sameiginlegri ákvarðanatöku um markmið og leiðir og samvinnu við þjónustuaðila. Foreldrar lýstu jafnframt þörf fyrir virk en viðráðanleg hlutverk sem taka ekki of mikið af tíma þeirra og kröftum. Niðurstöður rannsóknarinnar sýna fram á mikilvægi stefnumótunar í skipulagi og framkvæmd þjónustu þvert á þjónustukerfi heilbrigðis-, félags- og menntamála.
Journal of Child Health Care, Jan 13, 2012
The aim of this population-based study was to examine how parents of Icelandic children with phys... more The aim of this population-based study was to examine how parents of Icelandic children with physical disability view the services of physical, occupational, and speech therapists and how family centered those services are. A secondary aim was to compare the differences of parental perceptions of therapy services based on age, residence, and disabilities. Parents of 88 (46%) children aged 2–18 answered the Measure of Processes of Care–20 (MPOC-20), and six parents participated in a focus group interview. Descriptive data were used to explore central tendency and variability, and comparisons were made using analysis of variance. Overall, the parents found the therapy services respectful, supportive, and coordinated; they felt enabled in their parent role and worked mostly in partnership with the professionals. Nevertheless, parents perceived they received insufficient information from therapists. Parents reported a wish for more cooperation, teamwork, and a key worker. Findings indicate that the MPOC is reliable and easy to use within the Icelandic context.
Autism, Sep 21, 2016
Studies have shown parents to report lower quality of life for their children with autism spectru... more Studies have shown parents to report lower quality of life for their children with autism spectrum disorder than children's self-report scores and the same applies for data on typically developing children. Our objectives were to: (1) explore how high-functioning children with autism spectrum disorder rate their quality of life compared with paired controls without autism spectrum disorder; (2) explore how parents of high-functioning children with autism spectrum disorder rate their children's quality of life compared with parents of paired controls; and (3) compare child self-reports of quality of life with their parent's proxy-reports for both groups of children. Data were collected with the Icelandic self-and proxy-reported versions of the KIDSCREEN-27. Reports of 96 children with autism spectrum disorder, 211 controls and their parents were included in the analyses. Compared with controls, children with autism spectrum disorder had lower means on all quality of life dimensions. Parents of children with autism spectrum disorder evaluated their children's quality of life lower on all dimensions than did parents of controls. On four out of five dimensions, children with autism spectrum disorder reported better quality of life than did their parents. Despite differences in ratings children with autism spectrum disorder and their parents agreed on the most problematic dimensions, namely, social support and peers and physical well-being. Our results highlight the importance of seeking the viewpoints of both children and their parents.
Disability and Rehabilitation, 2023
Nordisk välfärdsforskning | Nordic Welfare Research, 2018
![Research paper thumbnail of [Extremely Low Birthweight Infants in Iceland. Neurodevelopmental profile at five years of age.]](https://attachments.academia-assets.com/106711742/thumbnails/1.jpg)
](PubMed, Nov 1, 2004
Objective: This study was part of a geographically defined national study on survival, health, de... more Objective: This study was part of a geographically defined national study on survival, health, development, and longterm outcome of extremely low birthweight infants (ELBW; birthweight < 1000g) in Iceland focusing on development and neurodevelopmental measures in comparison to a reference group. Methods: All 35 ELBW longtime survivors born in 1991-95 and 55 children as matched reference group were enrolled in a prospective study on longterm health and development. The children underwent medical examinations and neurodevelopmental testing at five years of age in 1996-2001, and their parents answered a questionnaire on their behavior. Comparison was made between ELBW infants and the reference group. Revised (WPPSI-R) showed significantly lower full scale IQ scores for the ELBW group compared to the reference group (p<0.001). More difference was apparent between the groups for the performance IQ than the verbal IQ. Scores on Test of Language Development (TOLD-2P) showed differences between the ELBW group and the reference group on the total language quotient (p=0.025). Significant differences were not obtained between the groups on TOLD-2P s individual subtests, languistic features nor linguistic systems. Total Scores on the Miller Assessment for Preschoolers (MAP) with emphasis on sensory motor development, were significantly lower for the ELBW group compared to the reference group (p<0.001). Additionally, significant differences were found on three of five subscales of the MAP. Evaluation of fine motor skills with the Finmotorisk utvecklingsstatus 1-7aar (FU) revealed significant differences (p<0.001), favoring the reference group. Parental answers on the Child Behavior Checklist (CBCL) showed differences between the groups on three of eight factors in favor of the reference group (p<0.001). Conclusions: Developmental testing at five years of age indicates that the performance of 25% of the ELBW children in this study, is consistent with that of same age peers. However, as a group, the ELBW children performed significantly poorer regarding cognitive development and sensory-motor skills when compared to the reference group. The most prominent neurodevelopmental difficulties of the ELBW children were within perceptual organization, coordination, and executive skills. Behavior problems were not rated as significant according to parental answers, although there were some differences between the groups. Since a large portion of ELBW children experiences developmental problems, it is important to provide early intervention during preschool years and support services and special education during school years, to reduce the longterm effects of developmental deficits.
![Research paper thumbnail of [Extremely Low Birthweight Infants in Iceland. Health and development.]](https://attachments.academia-assets.com/106712017/thumbnails/1.jpg)
](PubMed, Aug 31, 2006
Objective: Survival of extremely low birthweight infants (BW<1000g) in Iceland has increased in r... more Objective: Survival of extremely low birthweight infants (BW<1000g) in Iceland has increased in recent years, especially since the availability of surfactant therapy for Respiratory Distress Syndrome of Prematurity. This study was part of a geographically defined national study on survival, health, development and longterm outcome of extremely low birthweight (ELBW) infants in Iceland focusing on health, development and disabilities with reference to a control group. Material and methods: Information from the National Birth Registry on births in Iceland of ELBW infants weighing 500-999g was collected in two periods 1982-90 and 1991-95, before and after surfactant therapy became available. Information on pregnancy, birth, diseases in the newborn period and later health problems was collected from hospital records. The ELBW infants born in 1991-95 and matched control children were enrolled to a prospective study on longterm health and development. The children undervent medical examinations and developmental testing at 5 years of age in 1996-2001. Comparison was made between the two groups of ELBW infants and between ELBW infants and control children born in 1991-95. Results: In 1982-90 the longterm survival of ELBW infants at 5 years of age was 22% and 52% in 1991-95. In both periods 1982-90 and 1991-95 similar data was found on ELBW infants regarding mothers health, pregnancy, birth and neonatal period. Difference was found in maternal age being significantly higher (p=0.02) and significally more deliveries by cesarian section (p=0.02) in the latter period. The two groups of ELBW infants were similar regarding sex, birthweight and diseases in the newborn period. Comparison between 35 ELBW infants and 55 control children born 1991-95 showed that significantly more mothers of ELBW children smoked during pregnancy (p=0.003) and suffered from various diseases (p=0.001). More ELBW children were born by cesarian section (p=0.001) than control children and their parents reported more longterm health problems regarding astma (p=0.001), convulsions (p=0.001), difficulties in swallowing (p=0.001) and weight gaining (p=0.005). At five years of age significantly more ELBW children born in 1991-95 compared to control children had abnormal general physical examination (p</=0.001), neurological examination (p</=0.001) and motor skills (p</=0.001). Scores on developmental testing were significantly lower (p=0.002). The proportion of ELBW children with disabilities was 16% in 1982-90 and 14% in 1991-95. Conclusions: The two groups of ELBW infants born in 1982-90 and 1991-95 are similar regarding problems during pregnancy, birth and newborn period. The proportion of children with disabilities is similar in both periods although survival was significantly increased. When compared to matched control children, ELBW children born in 1991-95 suffer significantly more longterm health and developmental problems.
Tímarit um uppeldi og menntun, Jan 7, 2022
Journal of Occupational Science, Jan 2, 2021
ABSTRACT Moving between places in the community, or community mobility, is both an occupation and... more ABSTRACT Moving between places in the community, or community mobility, is both an occupation and a means to other occupations. In order to move around and participate in society, people with mobility impairments need modifications as they encounter multiple barriers in their everyday lives. This discussion paper makes recommendations for policy development, especially as it relates to accessibility and transportation services for disabled people. This work highlights aspects that need to be incorporated into policy making to support community mobility for people with mobility impairments: (1) Incorporation of occupational values; (2) Participatory policy making; (3) Consistency and transparency in policy documents; and (4) Comprehensive monitoring system. The recommendations are discussed and reflected upon in the light of human rights, occupational science, and the Capabilities Approach. This paper highlights issues that arise at the system level and how limitations of policies and their implementation can lead to multiple capability failures and violations of human rights – such as the difficulties people with mobility impairments face if society fails to provide the necessary means to support their community mobility – and the various ways that situation may affect their other chosen occupations.
The School Setting Interview (SSI) was developed to examine the level of studentenvironment fit o... more The School Setting Interview (SSI) was developed to examine the level of studentenvironment fit of students with physical disabilities and facilitate the planning of occupational therapy interventions in school. The SSI is specifically developed for students with physical disabilities who have some type of motor dysfunction, although it has relevance and can be used for students with other types of disabilities. It is a client-centred assessment intended for students from approximately 10 years of age and older. The SSI includes 16 items (i.e. questions) concerning everyday school activities where students with disabilities may need adjustments to be able to participate. Each item is scored using a four-step rating scale that enables the student and the therapist to jointly decide the level of studentenvironment fit.
Bedomning av anpassningar i skolmiljon (BAS) ar ett bedomningsinstrument som utvecklats i Sverige... more Bedomning av anpassningar i skolmiljon (BAS) ar ett bedomningsinstrument som utvecklats i Sverige for att anvandas inom skola. Det ar avsett for barn fran ungefar 7 ar och aldre. Anvandare av instr ...
Manga elever i dagens svenska skola ar i behov av anpassningar och sarskilt stod. For att ratt in... more Manga elever i dagens svenska skola ar i behov av anpassningar och sarskilt stod. For att ratt insatser ska kunna planeras och genomforas ar det viktigt att elevernas behov upptacks och kartlaggs p ...
Childhood and Disability in the Nordic Countries
Historically, studies on disabled children have been characterized by narrow and limited ways of ... more Historically, studies on disabled children have been characterized by narrow and limited ways of looking at their lives. Some historians have even characterized the study of childhood and disability as ‘a legacy of neglect’ (Safford & Safford, 1996, p. 1). When researchers have included disabled children they have typically been preoccupied with impairment, vulnerability, service use and the ‘burden’ of presumed dependency, at the expense of a more nuanced account of their everyday lives and identities (Avery, 1999; Davis, 2004; Shakespeare & Watson, 1998). The voices of the children themselves have frequently been excluded and research has, instead, highlighted the perspectives of parents and professionals. The result is that, until relatively recently, the lives of disabled children and youth have largely been seen through the eyes of adults. Over the past decades, however, there has been a notable increase in research that includes the views and perspectives of disabled children and youth, providing new insights and understandings of their lives and experiences (Asbjornslett et al., 2013; Connors & Stalker, 2003; Egilson, 2014; Egilson & Hemmingsson, 2009; Einarsdottir, 2007; Stalker, 2012; Watson et al., 1999; Ytterhus, 2012). This development has coincided with and been inspired by new approaches to the social studies of childhood (James & Prout, 1997), the emphasis on social and cultural understanding of disability within disability studies (Shakespeare, 2013) and a growing human rights perspective with regard to both children and disabled people.
Acknowledgements First of all we would like to thank all the disabled children and youth, and the... more Acknowledgements First of all we would like to thank all the disabled children and youth, and their families who took part in the various research projects presented in this book. We also thank all our Nordic colleagues who contributed to the book. We are grateful for their scholarly collaboration as well as their friendship, positive attitudes and patience throughout this project. Thorvaldur Kristinsson assisted with the copy-editing of the manuscript and Ian Watson and James Rice were invaluable as English language editors.
Tímarit um uppeldi og menntun, 2020
Tilgangur rannsóknarinnar var að kanna hvernig innflytjendafjölskyldur sem eigafötluð börn takast... more Tilgangur rannsóknarinnar var að kanna hvernig innflytjendafjölskyldur sem eigafötluð börn takast á við daglegt líf hér á landi, samskipti þeirra við nærsamfélagið ogþjónustukerfin sem ætlað er að styðja fjölskyldur fatlaðra barna. Rannsóknarsniðiðvar eigindlegt og byggðist á viðtölum við foreldra og þátttökuathugunum á heimilumþeirra. Tólf innflytjendafjölskyldur tóku þátt í rannsókninni. Þær höfðu dvalið áÍslandi allt frá 18 mánuðum til 20 ára og áttu samtals 16 fötluð börn. Reynsla fólksinsvar margþætt og breytileg en staða margra fjölskyldna var erfið, þær stóðu einar oghöfðu lítið stuðningsnet. Þótt samanburðurinn við upprunalandið væri hugsanlegahagstæður gat reynst erfitt að takast á við og samþætta viðfangsefni daglegs lífs.Óvissa í húsnæðismálum, atvinnumálum og fjármálum mótaði líf margra. Tungumálakunnátta,tryggur fjárhagur, öruggt húsnæði og viðeigandi stuðningur réðmestu um það hvernig fjölskyldunum farnaðist í nýju landi. Mikilvægt er að hugaað samskiptum og upplýsinga...
Scandinavian Journal of Occupational Therapy, Nov 2, 2015
Background: Family-centred ideology is increasingly regarded as a conceptual foundation in servic... more Background: Family-centred ideology is increasingly regarded as a conceptual foundation in services to children with disabilities. Objective: First, to examine the extent to which parents and therapists perceive the service as family-centred; second, to explore factors affecting parents' perceptions of the service; and third, to explore how parents understood service aspects typically characterising family-centred services (FCS), such as the goal-setting process. Material and methods: Parents of 236 children and 25 therapists completed questionnaires (MPOC-32; MPOC-SP). Five parents shared their experiences in an open interview. Results: On average parents and professionals consider the service to be family-centred from a 'fairly great' extent (Respectful and Supportive Care/Treating People Respectfully) to a 'small' extent (Providing General Information). Parents' experiences were influenced by their child's age, functional performance, and type of disability. Analysis of interview data revealed three categories: Experiencing trust and respect, Collaborating or just following instructions?, and Balancing therapy with daily activities. Conclusion: Parents praise interpersonal relations but lack of information limits their possibilities to make informed choices about services. In order to translate better into the daily life of the family the intervention should focus more on their activities, routines and participation within the communities they live in.
Scandinavian Journal of Disability Research, 2020
Disability studies and migrant studies have largely operated on different tracks. Despite the gro... more Disability studies and migrant studies have largely operated on different tracks. Despite the growing diversity within Icelandic society, little is known about the lives of migrant families with disabled children living there. Inspired by critical disability studies, migrant studies and Bourdieu's concepts of capital and field, we focused on the daily experiences of three migrant mothers of disabled children and their encounters with the Icelandic service system. The migrant women's experiences reflected their diverse positions and needs in terms of their participation and possibilities to use their resources to build upon and apply their social and cultural capital. Initially, all three intended to stay temporarily in Iceland, but the intersection of the birth of their disabled children, their possibilities for balancing work and care, as well as their experiences with the service system, ultimately affected their decision to stay or leave. The paper concludes with a call for a more nuanced understanding of the intersection between disability and migration in family lives.
ABSTRACT Markmið rannsóknarinnar var að kanna viðhorf foreldra barna með hreyfihömlun til þjónust... more ABSTRACT Markmið rannsóknarinnar var að kanna viðhorf foreldra barna með hreyfihömlun til þjónustu iðjuþjálfa og sjúkraþjálfara. Rannsóknin var unnin samkvæmt eigindlegri hefð. Gögnum var safnað með opnum viðtölum við 17 foreldra (14 mæður og þrjá feður) barna í 1.-7. bekk grunnskóla. Börnin og fjölskyldur þeirra höfðu notið þjónustu iðjuþjálfa og sjúkraþjálfara frá unga aldri. Gagnagreining byggði á grundaðri kenningu. Niðurstöður: Foreldrar töldu þjónustu iðjuþjálfa og sjúkraþjálfara mikilvæga en breytilega, háða því hvaða einstaklingur sinnti málum hverju sinni. Skortur á skýrum viðmiðum og samræmdu vinnulagi varð til þess að einstaklingsbundnir þættir í fari þjálfara skiptu miklu. Fram kom sterk ósk um fjölskyldumiðaða þjónustu með breytilegar þarfir barns og fjölskyldu að leiðarljósi. Einnig að þjálfarar hugi vel að aðstæðum barnanna og taki virka ábyrgð í að samhæfa upplýsingar og þjónustu. Flestir foreldrar óskuðu eftir gagnkvæmri virðingu, sameiginlegri ákvarðanatöku um markmið og leiðir og samvinnu við þjónustuaðila. Foreldrar lýstu jafnframt þörf fyrir virk en viðráðanleg hlutverk sem taka ekki of mikið af tíma þeirra og kröftum. Niðurstöður rannsóknarinnar sýna fram á mikilvægi stefnumótunar í skipulagi og framkvæmd þjónustu þvert á þjónustukerfi heilbrigðis-, félags- og menntamála.
Journal of Child Health Care, Jan 13, 2012
The aim of this population-based study was to examine how parents of Icelandic children with phys... more The aim of this population-based study was to examine how parents of Icelandic children with physical disability view the services of physical, occupational, and speech therapists and how family centered those services are. A secondary aim was to compare the differences of parental perceptions of therapy services based on age, residence, and disabilities. Parents of 88 (46%) children aged 2–18 answered the Measure of Processes of Care–20 (MPOC-20), and six parents participated in a focus group interview. Descriptive data were used to explore central tendency and variability, and comparisons were made using analysis of variance. Overall, the parents found the therapy services respectful, supportive, and coordinated; they felt enabled in their parent role and worked mostly in partnership with the professionals. Nevertheless, parents perceived they received insufficient information from therapists. Parents reported a wish for more cooperation, teamwork, and a key worker. Findings indicate that the MPOC is reliable and easy to use within the Icelandic context.
Autism, Sep 21, 2016
Studies have shown parents to report lower quality of life for their children with autism spectru... more Studies have shown parents to report lower quality of life for their children with autism spectrum disorder than children's self-report scores and the same applies for data on typically developing children. Our objectives were to: (1) explore how high-functioning children with autism spectrum disorder rate their quality of life compared with paired controls without autism spectrum disorder; (2) explore how parents of high-functioning children with autism spectrum disorder rate their children's quality of life compared with parents of paired controls; and (3) compare child self-reports of quality of life with their parent's proxy-reports for both groups of children. Data were collected with the Icelandic self-and proxy-reported versions of the KIDSCREEN-27. Reports of 96 children with autism spectrum disorder, 211 controls and their parents were included in the analyses. Compared with controls, children with autism spectrum disorder had lower means on all quality of life dimensions. Parents of children with autism spectrum disorder evaluated their children's quality of life lower on all dimensions than did parents of controls. On four out of five dimensions, children with autism spectrum disorder reported better quality of life than did their parents. Despite differences in ratings children with autism spectrum disorder and their parents agreed on the most problematic dimensions, namely, social support and peers and physical well-being. Our results highlight the importance of seeking the viewpoints of both children and their parents.
Disability and Rehabilitation, 2023
Nordisk välfärdsforskning | Nordic Welfare Research, 2018
PubMed, Nov 1, 2004
Objective: This study was part of a geographically defined national study on survival, health, de... more Objective: This study was part of a geographically defined national study on survival, health, development, and longterm outcome of extremely low birthweight infants (ELBW; birthweight < 1000g) in Iceland focusing on development and neurodevelopmental measures in comparison to a reference group. Methods: All 35 ELBW longtime survivors born in 1991-95 and 55 children as matched reference group were enrolled in a prospective study on longterm health and development. The children underwent medical examinations and neurodevelopmental testing at five years of age in 1996-2001, and their parents answered a questionnaire on their behavior. Comparison was made between ELBW infants and the reference group. Revised (WPPSI-R) showed significantly lower full scale IQ scores for the ELBW group compared to the reference group (p<0.001). More difference was apparent between the groups for the performance IQ than the verbal IQ. Scores on Test of Language Development (TOLD-2P) showed differences between the ELBW group and the reference group on the total language quotient (p=0.025). Significant differences were not obtained between the groups on TOLD-2P s individual subtests, languistic features nor linguistic systems. Total Scores on the Miller Assessment for Preschoolers (MAP) with emphasis on sensory motor development, were significantly lower for the ELBW group compared to the reference group (p<0.001). Additionally, significant differences were found on three of five subscales of the MAP. Evaluation of fine motor skills with the Finmotorisk utvecklingsstatus 1-7aar (FU) revealed significant differences (p<0.001), favoring the reference group. Parental answers on the Child Behavior Checklist (CBCL) showed differences between the groups on three of eight factors in favor of the reference group (p<0.001). Conclusions: Developmental testing at five years of age indicates that the performance of 25% of the ELBW children in this study, is consistent with that of same age peers. However, as a group, the ELBW children performed significantly poorer regarding cognitive development and sensory-motor skills when compared to the reference group. The most prominent neurodevelopmental difficulties of the ELBW children were within perceptual organization, coordination, and executive skills. Behavior problems were not rated as significant according to parental answers, although there were some differences between the groups. Since a large portion of ELBW children experiences developmental problems, it is important to provide early intervention during preschool years and support services and special education during school years, to reduce the longterm effects of developmental deficits.
PubMed, Aug 31, 2006
Objective: Survival of extremely low birthweight infants (BW<1000g) in Iceland has increased in r... more Objective: Survival of extremely low birthweight infants (BW<1000g) in Iceland has increased in recent years, especially since the availability of surfactant therapy for Respiratory Distress Syndrome of Prematurity. This study was part of a geographically defined national study on survival, health, development and longterm outcome of extremely low birthweight (ELBW) infants in Iceland focusing on health, development and disabilities with reference to a control group. Material and methods: Information from the National Birth Registry on births in Iceland of ELBW infants weighing 500-999g was collected in two periods 1982-90 and 1991-95, before and after surfactant therapy became available. Information on pregnancy, birth, diseases in the newborn period and later health problems was collected from hospital records. The ELBW infants born in 1991-95 and matched control children were enrolled to a prospective study on longterm health and development. The children undervent medical examinations and developmental testing at 5 years of age in 1996-2001. Comparison was made between the two groups of ELBW infants and between ELBW infants and control children born in 1991-95. Results: In 1982-90 the longterm survival of ELBW infants at 5 years of age was 22% and 52% in 1991-95. In both periods 1982-90 and 1991-95 similar data was found on ELBW infants regarding mothers health, pregnancy, birth and neonatal period. Difference was found in maternal age being significantly higher (p=0.02) and significally more deliveries by cesarian section (p=0.02) in the latter period. The two groups of ELBW infants were similar regarding sex, birthweight and diseases in the newborn period. Comparison between 35 ELBW infants and 55 control children born 1991-95 showed that significantly more mothers of ELBW children smoked during pregnancy (p=0.003) and suffered from various diseases (p=0.001). More ELBW children were born by cesarian section (p=0.001) than control children and their parents reported more longterm health problems regarding astma (p=0.001), convulsions (p=0.001), difficulties in swallowing (p=0.001) and weight gaining (p=0.005). At five years of age significantly more ELBW children born in 1991-95 compared to control children had abnormal general physical examination (p</=0.001), neurological examination (p</=0.001) and motor skills (p</=0.001). Scores on developmental testing were significantly lower (p=0.002). The proportion of ELBW children with disabilities was 16% in 1982-90 and 14% in 1991-95. Conclusions: The two groups of ELBW infants born in 1982-90 and 1991-95 are similar regarding problems during pregnancy, birth and newborn period. The proportion of children with disabilities is similar in both periods although survival was significantly increased. When compared to matched control children, ELBW children born in 1991-95 suffer significantly more longterm health and developmental problems.