| 1. |
- Eliasson, Ann-Christin, et al.
(författare)
-
Efficacy of the small step program in a randomised controlled trial for infants below age 12 months with clinical signs of CP; a study protocol
- 2016
-
Ingår i: BMC Pediatrics. - London : Springer Science and Business Media LLC. - 1471-2431. ; 16
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Children with cerebral palsy (CP) have life-long motor disorders, and they are typically subjected to extensive treatment throughout their childhood. Despite this, there is a lack of evidence supporting the effectiveness of early interventions aiming at improving motor function, activity, and participation in daily life. The study will evaluate the effectiveness of the newly developed Small Step Program, which is introduced to children at risk of developing CP during their first year of life. The intervention is based upon theories of early learning-induced brain plasticity and comprises important components of evidence-based intervention approaches used with older children with CP.Method and design: A two-group randomised control trial will be conducted. Invited infants at risk of developing CP due to a neonatal event affecting the brain will be randomised to either the Small Step Program or to usual care. They will be recruited from Astrid Lindgren Children's Hospital at regular check-up and included at age 3-8 months. The Small Step Program was designed to provide individualized, goal directed, and intensive intervention focusing on hand use, mobility, and communication in the child's own home environment and carried out by their parents who have been trained and coached by therapists. The primary endpoint will be approximately 35 weeks after the start of the intervention, and the secondary endpoint will be at 2 years of age. The primary outcome measure will be the Peabody Developmental Motor Scale (second edition). Secondary assessments will measure and describe the children's general and specific development and brain pathology. In addition, the parents' perspective of the program will be evaluated. General linear models will be used to compare outcomes between groups.Discussion: This paper presents the background and rationale for developing the Small-Step Program and the design and protocol of a randomized controlled trial. The aim of the Small Step Program is to influence development by enabling children to function on a higher level than if not treated by the program and to evaluate whether the program will affect parent's ability to cope with stress and anxiety related to having a child at risk of developing CP.
|
|
| 2. |
- Holmström, Linda, et al.
(författare)
-
Efficacy of the Small Step Program in a Randomized Controlled Trial for Infants under 12 Months Old at Risk of Cerebral Palsy (CP) and Other Neurological Disorders
- 2019
-
Ingår i: Journal of Clinical Medicine. - : MDPI. - 2077-0383. ; 8:7
-
Tidskriftsartikel (refereegranskat)abstract
- The objective was to evaluate the effects of the Small Step Program on general development in children at risk of cerebral palsy (CP) or other neurodevelopmental disorders. A randomized controlled trial compared Small Step with Standard Care in infants recruited at 4-9 months of corrected age (CA). The 35-week intervention targeted mobility, hand use, and communication during distinct periods. The Peabody Developmental Motor Scales2ed (PDMS-2) was the primary outcome measure. For statistical analysis, a general linear model used PDMS-2 as the main outcome variable, together with a set of independent variables. Thirty-nine infants were randomized to Small Step (n = 19, age 6.3 months CA (1.62 SD)) or Standard Care (n = 20, age 6.7 months CA (1.96 SD)). Administering PDMS-2 at end of treatment identified no group effect, but an interaction between group and PDMS-2 at baseline was found (p < 0.02). Development was associated with baseline assessments in the Standard Care group, while infants in the Small Step group developed independent of the baseline level, implying that Small Step helped the most affected children to catch up by the end of treatment. This result was sustained at 2 years of age for PDMS-2 and the PEDI mobility scale.
|
|
| 3. |
- Jacobson, Dan N O, et al.
(författare)
-
A First Clinical Trial on Botulinum Toxin-A for Chronic Muscle-Related Pain in Cerebral Palsy
- 2021
-
Ingår i: Frontiers in Neurology. - : Frontiers Media S.A.. - 1664-2295. ; 12
-
Tidskriftsartikel (refereegranskat)abstract
- Objective: To test if botulinum toxin-A (BoNT-A) is effective in reducing chronic muscle-related pain in adults with spastic cerebral palsy (CP), as compared to placebo.Design: A single-center, double-blind, parallel, randomized placebo-controlled trial. The design included an interim analysis to allow for confirmatory analysis, as well as pilot study outcomes.Setting: Tertiary university hospital.Participants: Adults with spastic CP and chronic pain associated with spastic muscle(s).Intervention: Treatment was one session of electromyographically guided intramuscular injections of either BoNT-A or placebo normosaline.Main Study Outcomes: The primary outcome was the proportion who achieved a reduction of pain intensity of two or more steps on the Numerical Rating Scale 6 weeks after treatment.Results: Fifty individuals were screened for eligibility, of whom 16 were included (10 female, 6 male, mean age = 32 years, SD = 13.3 years). The randomization yielded eight participants per treatment arm, and all completed the study as randomized. The study was stopped at the interim analysis due to a low probability, under a preset threshold, of a positive primary outcome. Four individuals were treatment responders in the BoNT-A group for the primary outcome compared to five responders in the placebo group (p = 1.000). Adverse events were mild to moderate. In exploratory analysis, the BoNT-A group had a trend of continuing reduction of pain at the last follow-up, after the primary endpoint.Conclusions: This study did not find evidence that BoNT-A was superior to placebo at the desired effect size (number needed to treat of 2.5) at 6 weeks after treatment. Trial registration: ClinicalTrials.gov: NCT02434549
|
|
| 4. |
- Jacobson, Dan N O, et al.
(författare)
-
Health-related quality of life, pain, and fatigue in young adults with cerebral palsy
- 2020
-
Ingår i: Developmental Medicine & Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 62:3, s. 372-378
-
Tidskriftsartikel (refereegranskat)abstract
- AIM: To describe health-related quality of life (HRQoL), pain, fatigue, and other health variables in young adults with cerebral palsy (CP), and to explore associations with the Gross Motor Function Classification System - Expanded and Revised (GMFCS-ER) and physical activity.METHOD: This was a cross-sectional study of 61 young adults at a mean age of 21 years 2 months (standard deviation 8mo, range 20-22y) with CP, from a geographically defined area. Data collection included: Short Form 36 version 2 for HRQoL, Brief Pain Inventory - Short Form, Fatigue Severity Scale, level of physical activity, medical history, and physical examination.RESULTS: Overall HRQoL equalled that of population norms; however self-reported physical health was lower in GMFCS-ER levels III to V compared to GMFCS-ER levels I to II. Self-reported mental health was, inversely, lower in GMFCS-ER levels I to II compared to GMFCS-ER levels III to V. Pain prevalence was 49%, and pain was present across all GMFCS-ER levels. Fatigue, as well as sleep problems, had 41% prevalence, with fatigue severity decreasing with increasing level of physical activity.INTERPRETATION: General HRQoL in young adults with CP was comparable to population norms. Pain and fatigue are important to address in high motor-functioning individuals also. Physical activity could be a possible protective factor against fatigue.WHAT THIS PAPER ADDS:Health-related quality of life in young adults with cerebral palsy (CP) was comparable to population norms.Pain, fatigue, and sleep problems occurred at all Gross Motor Function Classification System levels.There is a possible protective effect of physical activity on fatigue.
|
|
| 5. |
|
|
| 6. |
- Baraldi, Erika, 1982-, et al.
(författare)
-
Clinical Protocol & Research Process of Stockholm Preterm Interaction-Based Intervention, SPIBI
- 2019
-
Ingår i: Pediatric Research. - : Springer Science and Business Media LLC. - 0031-3998 .- 1530-0447. ; 86:Suppl., s. 54-55
-
Tidskriftsartikel (refereegranskat)abstract
- BackgroundExtremely preterm (EPT) born children are at increased risk of cognitive and neurodevelopmental impairment, neuropsychiatric disorders and academic difficulties. Parents of EPT born children are extra vulnerable for anxiety, posttraumatic stress disorder and depression and the parent-child interaction is negatively affected by prematurity. There is some evidence that early interventions have beneficial effects on neurocognitive and motor outcomes (Spittle A et al 2015). Based on a previous intervention (Verkerk G et al 2012) and adjusted to the Swedish context with 480 days paid parental leave, we created a post–discharge intervention, SPIBI, for families of EPT born children.MethodThe aim of (SPIBI) is to improve the quality of the parent-child interaction, child development and parental mental health in families with EPT born children. . SPIBI is a randomized controlled beginning at discharge and lasting until the child is 12 months corrected age. The trial design is a two arm randomized trial with four recruiting sites in Stockholm. Intervention group (target, n=65) receives 10 visits and two telephone calls from a trained interventionist and the control group (target n=65) receives treatment as usual plus an extended follow-up program. The SPIBI-team has recruited and trained 6 multi-professional and NICU-experienced interventionists. The training takes one year (0.2 of full time) and the content was both theoretical and practical, including pilot-cases. ResultSPIBI is an ongoing research project, beginning the 1st of September 2018 and planning to end recruitment the 31st of August 2020 and finishing the home-visits in August 2021. By the end of April 2019, 33 eligible infants had been identified within the four neonatal units in Stockholm; of which 26 children approved and 7 children declined participation. At this stage, three children have dropped out of the study, because of severe social challenges and child death. Identified challenges have been social and medical vulnerability of the EPT-families, finding the optimal multi-professional balance of motoric, psychological, pedagogical and medical kernels of the intervention, ethical considerations when to ask families for participation, lack of long-term discharge-planning of the neonatal units and large geographical spread of NICUs as well as families.ConclusionIn conclusion, the protocol seem to be feasible and appreciated by parents in the target group. With regard to the small recruitment base, trials of this kind needs a long inclusion time. Since EPT-children and their parents displays a wide scope of difficulties and challenges, multi-professional cooperation is preferable, placing high demands of sensitivity, professional respect and time for long collaborative processes.
|
|
| 7. |
- Baraldi, Erika, 1982-, et al.
(författare)
-
Early intervention program of extreme preterm born infants, status report three years into the project
- 2021
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Children born extremely preterm (e.g. before 28 gestational weeks, EPT) runs a greater risk of cognitive, motor and neurobehavioral impairment later in life, compared to children born at term. Moreover, being a parent of an EPT born child increases the probability of developing depression and posttraumatic stress disorder post-partum, as well as the premature birth may affect the parent-child interaction negatively. In an attempt to decrease the psychological and motoric negative impact of both the child and parents, our multi-professional team has developed an early intervention during the first year at home focusing om parent-child interaction of the EPT born children: Stockholm Preterm Interaction-Based Intervention, SPIBI (Baraldi et al., 2020a). The target of the RCT is 130 children and after 32 months 112 children has been included in the study, evenly distributed in the intervention group and control group. At children’s corrected age of one-year, parents from 14 of the first included families were interviewed about their experiences from the intervention program, resulting in a qualitative article. Three main themes of parental experiences of the first year at home emerged: child-related concerns (concerning child medical state, self-regulation and recovery), parental inner state (concerning loneliness, ambivalence and premature parental identity), and changed family dynamics (concerning the couple, siblings and intergenerational support). The parents from the intervention group reported that the intervention had given them security, a sense that the interventionist has been knowledgeable and in some cases that the program was important but not necessary to them (Baraldi et al., 2020b). With 85% of the targeted subjects included it is clear that an extensive early home-visit intervention program is feasible in the Swedish context, even though the pandemic has slowed down the recruitment pace and has forced adjustments to be made such as the use of telemedicine, exclusion of toys in the follow-up process and intensified hygienic procedures.
|
|
| 8. |
- Baraldi, Erika, 1982-, et al.
(författare)
-
Home-visits during the first year of life : a strengths-based intervention for extremely premature infants and their parents, a randomized-control trial developed in Stockholm Region
- 2020
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- In Sweden 400 children yearly are born extremely preterm (EPT; more than three months early). These children have an increased risk of later academic difficulties, neuropsychiatric disorder, cognitive and mental health issues. Since the first 1000 days of the brain development are so crucial for later development, the interdisciplinary Stockholm Preterm Interaction-Based Intervention (SPIBI) aims at strengthening the parent-child interaction, child development and parental mental health. The research is based on pedagogical, motor-developmental, medical and psychological science. The program is based on Vygotski’s theory of the zone of proximal development, as well theoretical frameworks of early intervention (Guralnick; Shonkoff). Additionally, Als’ synactive theory of understanding premature infant communication and needs, Bowlby’s attachment theory, and Emde’s emotional availability theory have been applied. SPIBI is an ongoing research project funded by Stockholm-County-Stockholm-University joint-collaboration grant 20160881. It is an RCT targeting 130 EPT infants and their parents in Stockholm with a 3-year inclusion period starting September 2018. The intervention consists of ten home-visits during the first year by trained interventionists, supporting the next developmental step of the child through a scaffolding process, strengthening parental sensitivity to infant cues, and promoting infant’s self-regulation. SPIBI has recruited and trained six multi-professional-NICU-experienced interventionists. Control group participants receive TAU plus an extended follow-up program.The overall aim is to present the framework and theory of change of SPIBI, relating to research findings, welfare policies and recommendations for infant’s “chain of care”. So far, sixty eligible infants have been identified within four neonatal units; of which 48 approved participation. The primary outcome is emotional availability of the parent and child, where we hypothesize that the intervention will affect the parental sensitivity and structure of interaction with the child. Secondary outcomes concern child development, i.e. motor development, cognition and occurrence of neuropsychiatric symptoms, parental mental health, anxiety and self-efficacy, where we also hypothesize positive effects of the intervention. Since Nordic countries have neonatal intensive care of high quality, the amount of EPT survivors is high compared to other countries; therefore, the educational systems must follow achievements reached by health care system and develop new evidence-based interventions in early childhood education, which are appropriated for EPT born children and their parents, following recent European Standards of Care for Newborn Health (2018).Insights from neuro-cognition, early intervention and educational research has shown the importance of interdisciplinary interventions, and this should be spread around the Nordic countries.Nordic countries offer a unique social environment, with governmental funded parental-leave, enabling early-interventions delivered by parents.The EPT children in Nordic countries are less affected by socioeconomic factors, as is often the case where maternity welfare and obstetrics is not publically financed. Hence, Nordic countries have a unique opportunity to perform research targeting EPT students and their parents specifically, with less confounding factors.Some Nordic countries have adopted policies concerning home-visiting support and infants’ rights, as recommended by the World Association of Mental health’s policy statement from 2016, and Nordic knowledge exchange and collaboration on these policies is warranted.
|
|
| 9. |
- Baraldi, Erika, 1982-, et al.
(författare)
-
Innovative multiprofessional early intervention aiming at improving development of prematurely born children
- 2024
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Abstract: Extremely preterm born children and their parents is a vulnerable group with a high risk of developmental delays, academic challenges and parental mental health difficulties. Previously interventions have been medical focusing of increasing survival, but recently post-discharge interventions improving long-term development have been presented. This abstract concerns a novel multiprofroessional intervention, Stockholm Preterm Interaction-Based Intervention (SPIBI) aiming at consolidation of expertise from educational, behavioral and medical fields in benefit of the child development and family well-being. Rationale and purpose: SPIBIs purpose is to enhance the parent-child interaction, child cognitive and motor development, child preschool social participation and parental mental health in families with extreme preterm born infants.Description of methods, results, or modes of inquiry: In a novel RCT a strengths-based post-discharge intervention targeting extreme preterm born (EPT= born before 28 gestational weeks) infants and their parents is being tested. 130 EPT born children and their parents have been randomly allocated to an intervention group receiving 10 home visits during the first year at home, or a control group receiving treatment as usual with an extended follow-up program. The novel intervention is named Stockholm Preterm Interaction-Based Intervention (SPIBI).Innovation: The field of long-term development of extremely born infants is innovative in itself, since the field consist of a severely vulnerable population on the verge of viability, who did not survive twenty years ago. The innovation in SPIBI is its consolidation of practical knowledge as well as research concerning the challenges of extreme prematurity from a medical (brain developmental), special educational (preschool behavioral), physiotherapeutic (motor), psychological (parent-child-interactional and cognitive) perspective. Working together will benefit the child and family as a whole, since extreme prematurity is a nuanced field with implications for several aspects of development. Despite this, previous international research from the field is almost always unidisciplinary.Implications for policy or practice: The outcome will influence practice at a regional and possible national level, concerning how a low cost early intervention may improve several outcomes and reduce challenges for a group of children with a high risk of developmental delays.Relationship to principles of diversity, equity, and inclusion: The extreme preterm born population often has double challenges, both concerning developmental delays and socioeconomic hardships, both internationally and in a Swedish context. Giving this vulnerable population initial extra support is ultimately a question of equity, increasing the chance of participating in fully inclusive learning environments ahead.Methods used to encourage audience engagement When presenting the poster, these 3 questions will be continuously discussed with researchers passing by:1. What do parents to medically fragile infants who have been balancing on the verge of death, need when the family comes back home from the hospital?2. What are the key elements of multidisciplinary and multiprofessional co-operation between medicine, psychology and special education?3. What may be the different needs of different groups of families with extreme preterm born children, regarding socioeconomic background, severity of prematurity and migration statues?
|
|
| 10. |
- Baraldi, Erika, 1982-, et al.
(författare)
-
Insights Gained from Stockholm Preterm Interaction-Based Intervention - A Critical View
- 2022
-
Konferensbidrag (refereegranskat)abstract
- SPIBI is a strength-based early intervention targeting parent-child interaction amongst extremely preterm born infants, currently tested in an RCT in Sweden. Of 130 infants, 72% have reached 12 months of age. Based on interviews with 17 parents’ and 6 intervention providers we identified SPIBI strengths and shortcomings. SPIBI seems feasible, is possible to integrate it into home-visiting practice and is appreciated by parents. Identified challenges are geographical distance; recruitment obstacles including Covid-19, leading to longer-term implementation; service-provider fatigue; and social adversities amongst some eligible participants requiring ethical considerations. Future improvements include: reconsidering inclusion criteria, increasing use of e-health, and exploring the possibility of a tiered approach.
|
|
| 11. |
|
|
| 12. |
- Baraldi, Erika, 1982-, et al.
(författare)
-
Parents’ Experiences of the First Year at Home with an Infant Born Extremely Preterm with and without Post-Discharge Intervention : Ambivalence, Loneliness, and Relationship Impact
- 2020
-
Ingår i: International Journal of Environmental Research and Public Health. - : MDPI AG. - 1661-7827 .- 1660-4601. ; 17:24
-
Tidskriftsartikel (refereegranskat)abstract
- With increasing survival rates of children born extremely preterm (EPT), before gestational week 28, the post-discharge life of these families has gained significant research interest. Quantitative studies of parental experiences post-discharge have previously reported elevated levels depressive symptoms, posttraumatic stress-disorder and anxiety among the parents. The current investigation aims to qualitatively explore the situation for parents of children born EPT in Sweden during the first year at home. Semi-structured interviews were performed with 17 parents of 14 children born EPT; eight parents were from an early intervention group and nine parents from a group that received treatment as usual, with extended follow-up procedures. Three main themes were identified using a thematic analytic approach: child-related concerns, the inner state of the parent, and changed family dynamics. Parents in the intervention group also expressed themes related to the intervention, as a sense of security and knowledgeable interventionists. The results are discussed in relation to different concepts of health, parent–child interaction and attachment, and models of the recovery processes. In conclusion, parents describe the first year at home as a time of prolonged parental worries for the child as well as concerns regarding the parent’s own emotional state.
|
|
| 13. |
- Baraldi, Erika, 1982-, et al.
(författare)
-
Stockholm Preterm Interaction-Based Intervention, SPIBI
- 2019
-
Konferensbidrag (refereegranskat)abstract
- BakgrundI Sverige föds mellan 300 och 400 barn innan den 28 graviditetsveckan. Omkring 2/3 av de extremt prematurfödda barnen har ingen eller en mild funktionsnedsättning medan 1/3 har medelsvår till svår funktionsnedsättning vid skolstart (Serenius et al, 2016). De vanligaste svårigheterna efter extrem prematur födsel är intellektuell funktionsnedsättning (Jarjour, 2015), i synnerhet svårigheter med arbetsminnet och den exekutiva funktionsutvecklingen (Stålnacke et al., 2018; Mulder et al., 2009). Även neuropsykiatriska funktionsnedsättningar som ADHD (Burnett et al., 2014) och autism är överrepresenterade i gruppen prematurfödda barn, 8- 29% av de extremt prematurfödda barnen skattas positivs på screeningtest för AST (Johnson et al., 2010; Kim, 2016 & Padilla et al., 2015).Inte bara barnet påverkas av den extremt för tidiga födseln, även föräldrarna kastas snabbt in i ett stressigt föräldraskap till ett skört och ofta sjukt spädbarn som inte är som de föreställde sig under graviditeten. Dessa stressiga omständigheter bidrar till att föräldrarna löper en ökad risk för posttraumatisk stress och depressiva symtom än föräldrar till fullgångna barn (Holditch-Davis et al, 2003; Holditch-Davis et al, 2015; Kong et al., 2013 & Singer på al., 1999). Dessutom påverkas samspelet mellan föräldrar och barn och familjesituationen negativt (Forcada-Guex et al., 2006; Saigal et al., 2000 & Treyvaut et al., 2014). När en förälder är psykiskt labil påverkar detta barnet på ett socialt, beteendemässigt och funktionellt sätt, ända till det för tidigt föda barnet är i förskoleåldern (Huhtala et al., 2011 & Huhtala et al., 2014). Det ger därför dubbel utdelning att ta hand om föräldrarna till tidigt födda barn, både genom att påverka den vuxne direkt och barnet indirekt.Svenska Prematurförbundet (SPF) har under flera år pekat på de långsiktiga effekterna av för tidig födsel och därmed behovet av långsiktigt stöd till de drabbade familjerna (Prematurförbundet, 2019). Efter utskrivning från sjukhuset rapporterar många av föräldrarna att de känner sig ensamma, stressade och oroliga. Sådana stödprogram har inte införts eller utvärderats tidigare i Sverige.Sammanfattningsvis, utifrån risken för negativa långtidseffekter av extrem prematuritet samt Prematurförbundets önskan om ytterligare stöd, finns ett tydligt behov av interventioner riktade till barnen och deras föräldrar i syfte att stödja föräldra-barnsamspelet, barnets utveckling på sikt samt föräldrarnas psykiska hälsa. SPIBI är et interventionsprogram som ämnar fylla det behovet.MetodSPIBI består av en tvärprofessionell forskargrupp med neonatologer, psykologer, fysioterapeut och specialpedagog. Forskargruppen har designat en RCT i syfte att utvärdera effekten av ett samspelsbaserat interventionsprogram för extremt prematurfödda spädbarn och deras föräldrar, med sin början i utskrivningsprocessen som pågår under förta året hemma. Studien består av två armar, en interventionsgrupp och en kontrollgrupp, och barnen rekryteras från Stockholms fyra neonatalavdelningar under två års tid (sept 2018-sept 2020). Målet är att rekrytera 130 familjer på två år. Interventionsgruppen (IG) får 10 hembesök och två telefonsamtal från en specialutbildad behandlare. Interventionens fokus är styrkebaserat stöd av föräldra-barnsamspelet, öka förälderns lyhördhet för barnets signaler, stödja föräldern i att ge optimalt utvecklingsstöd till barnet samt öka barnets självreglerande förmåga. I det nationella uppföljningsprogrammet får alla extremt prematurfödda barn uppföljning vid 3 månader, 12 månader, 24 månader KÅ. Kontrollgruppens (KG) barn får utöver detta ett utökat uppföljningsprogram. Studiens sex behandlare arbetar inom neontalvården till vardags och har utöver detta fått en ettårig utbildning i SPIBI en dag per vecka, med både teoretisk grund och praktisk träning i interventionen, inklusive sex pilotfallshembesök. Pilotfallen videofilmades och diskuterades i grupp under handledning. Handledningen gavs direkt av de två holländska forskarna Karen Koldewijn och Marie-Jeanne Wolf från Amsterdam Academic Medical Centre som forskat på den snarlika TOP-interventionen i över 20 år och kunnat påvisa effekt på motoriken (Koldewijn et al., 2009; Meijssen et al., 2011; Flierman et al., 2016 & Koldewijn et al., 2010). Grunden till SPIBI interventionen kom utöver TOP-programmet från Cochrane-rapporten från 2015 om post-discharge interventions (Spittle et al., 2015).ResultatSPIBI är ett pågående forskningsprojekt som hittills rekryterat 44 barn, medan ytterligare 12 familjer tackat nej till deltagande i studien. I nuläget har två barn uteslutits ur studien av svåra psykosociala skäl och ytterligare två barn har avlidit under första året hemma. Identifierade utmaningar har varit den sociala och medicinska skörhet som de här familjerna behöver hantera, att hitta den optimala tvärprofessionella balansen mellan fysioterapeutiska, psykologiska, pedagogiska och medicinska inslag i interventionen, otillräcklig utskrivningsplanering från de olika sjukhusen, stor geografisk spridning på sjukhusenheterna samt den etiska frågan när i barnets liv det optimala tillfället för frågan om studiedeltagande är. Eftersom rekryteringsprocessen idag kommit halvvägs tidsmässigt kan inga resultat presenteras än, men med ett 80 % deltagande i studien och mycket positiv återkoppling från familjerna kan man dra slutsatsen att denna forskning är efterfrågad och ett viktigt nästa steg i utvecklingen av vården för våra allra mest sköra patienter.SlutsatserSlutsatsen är att SPIBI-protokollet är både genomförbart i klinisk praxis och samtidigt uppskattat av föräldrarna i målgruppen. Med hänsyn taget till den smala rekryteringsbasen kan denna typ av studie kräva en lång inkluderingstid alternativt inkludering på nationell nivå. Eftersom extremt prematurfödda barn och deras föräldrar uppvisar en rad svårigheter och utmaningar, är tvärprofessionellt samarbete att föredra vilket ställer höga krav på lyhördhet, professionell respekt och got om tid för samarbete. På Perinataldagarna kan forskningsprocessen och interventionsprogrammet presenteras i syfte att öka förståelsen för uppföljningen och behovet av ett integrerat föräldrastöd.
|
|
| 14. |
- Baraldi, Erika, 1982-, et al.
(författare)
-
Stockholm Preterm Interaction-based Intervention (SPIBI) – Av RCT Assessing Parent-Infant Interaction at 12 Months Corrected Age in Extremely Preterm Born Infants and Their Parents
- 2023
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- BackgroundParental responsiveness is of great importance for positive effects of behavioral and cognitive development in preterm infants and the Emotional availability scales (EAS) is a clinically relevant assessment measure, for early neurodevelopment. The EAS is an observational measure which reflects the quality of parent–child relationship and the child’s socio-emotional development. It has 4 adult domains (sensitivity, structuring, non-intrusiveness, non-hostility) and 2 child domains (responsiveness, involvement) (Biringen 2014). In an ongoing RCT of an intervention for extremely preterm (EPT) born infants and their parents, the Stockholm Preterm Interaction-Based Intervention (SPIBI), the primary outcome measure is EAS used at 12 months corrected age (CA). The aim for this sub-study is to evaluate the inter-rater reliability of EAS in this cohort.MethodDuring the first year after discharge, ten home visits were carried out from specially educated interventionists of our multidisciplinary team. 130 EPT infants were recruited and 115 have been filmed and assessed at 12 months CA. The parent was instructed to play with the infant for 10 minutes. Dyads were filmed, videos assessed and scored by a trained EAS-accredited team member. 20% of the videos (23/115) were assessed by an additional EAS-accreditor to evaluate inter-rater-reliability. Interclass Correlation Coefficient (ICC) were used. To obtain authenticity with real-life, the videos were filmed in a home setting with opportunity to choose study parent. Interaction were encouraged to proceed in an ordinary pattern.ResultsICC values range 0,86 - 0,96 within all dimensions, all individual values, 95%CI (Table 1). This indicates high inter-rater reliability, although some of the subscales had lower ICC (0,73-0,98). ConclusionThe SPIBI study corresponds well with EAS scoring assessment method for reflection of parent-infant interaction at 12 months CA in EPT born infants.
|
|
| 15. |
- Baraldi, Erika, 1982-, et al.
(författare)
-
Stockholm preterm interaction-based intervention (SPIBI) - study protocol for an RCT of a 12-month parallel-group post-discharge program for extremely preterm infants and their parents
- 2020
-
Ingår i: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 20:1
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Improved neonatal care has resulted in increased survival rates among infants born after only 22 gestational weeks, but extremely preterm children still have an increased risk of neurodevelopmental delays, learning disabilities and reduced cognitive capacity, particularly executive function deficits. Parent-child interaction and parental mental health are associated with infant development, regardless of preterm birth. There is a need for further early interventions directed towards extremely preterm (EPT) children as well as their parents. The purpose of this paper is to describe the Stockholm Preterm Interaction-Based Intervention (SPIBI), the arrangements of the SPIBI trial and the chosen outcome measurements.Methods: The SPIBI is a randomized clinical trial that includes EPT infants and their parents upon discharge from four neonatal units in Stockholm, Sweden. Inclusion criteria are EPT infants soon to be discharged from a neonatal intensive care unit (NICU), with parents speaking Swedish or English. Both groups receive three initial visits at the neonatal unit before discharge during the recruitment process, with a strengths-based and development-supportive approach. The intervention group receives ten home visits and two telephone calls during the first year from a trained interventionist from a multi-professional team. The SPIBI intervention is a strengths-based early intervention programme focusing on parental sensitivity to infant cues, enhancing positive parent-child interaction, improving self-regulating skills and supporting the infant’s next small developmental step through a scaffolding process and parent-infant co-regulation. The control group receives standard follow-up and care plus extended assessment. The outcomes of interest are parent-child interaction, child development, parental mental health and preschool teacher evaluation of child participation, with assessments at 3, 12, 24 and 36 months corrected age (CA). The primary outcome is emotional availability at 12 months CA.Discussion: If the SPIBI shows positive results, it could be considered for clinical implementation for child-support, ethical and health-economic purposes. Regardless of the outcome, the trial will provide valuable information about extremely preterm children and their parents during infancy and toddlerhood after regional hospital care in Sweden.Trial registration: The study was registered in ClinicalTrials.gov in October 2018 (NCT03714633).
|
|
| 16. |
- Baraldi, Erika, 1982-, et al.
(författare)
-
The development of a post-discharge intervention program in Sweden for extremely preterm infants and their caregivers, through home visits during their first year of life
- 2019
-
Konferensbidrag (refereegranskat)abstract
- Sweden has a proactive neonatal intensive care, saving children born from gestation week 22, with a 90% survival rate in the extremely preterm (EPT) group. With increased survival rates, the long-term outcome of the EPT children has gained much research interest. Recent studies indicate that 1/3 of the EPT-children in Sweden show moderate to severe neurodevelopmental deficits when beginning school. An interdisciplinary research team has designed an intervention for EPT infants and their caregivers in their home-environment after hospital discharge and throughout the first year of life. The aim of the ongoing randomized controlled trial is to study intervention effects on the children’s cognitive, motor and psychosocial function, the parental mental health and the infant-parent interaction. This paper present the intervention’s theory of change, the validity considerations, and an overview of the syllabus of the training given to the interdisciplinary team of six clinicians who serve as interventionists.
|
|
| 17. |
- Lidbeck, Cecilia, et al.
(författare)
-
Motor Development in Children with Cerebral Palsy in Sweden : A Population-Based Longitudinal Register Study
- 2023
-
Ingår i: Children. - : MDPI. - 2227-9067. ; 10:12
-
Tidskriftsartikel (refereegranskat)abstract
- The aim was to explore longitudinal motor development in children with cerebral palsy (CP) in Sweden with respect to the Gross Motor Function Classification System (GMFCS). In this national CP registry-based study, 2138 children aged 0.5-19 years participated (42% girls). The distribution with respect to GMFCS was I: 49%, II: 16%, III: 10%, IV: 14%, and V: 11%. In total, 5538 assessments (mean 2.7, min-max: 1-9) with the Gross Motor Function Measure-66 were included. Data were analysed using non-linear mixed-effects regression models, and the Stable Limit Model was selected to fit data. Five distinct curves of predicted gross motor development with respect to GMFCS levels were obtained. The achieved motor development was maintained over time. The estimated average GMFM-66 limit and the average age when 90% of the expected limits were reached were at GMFCS I: 88 at age 4.5; GMFCS II: 71 at age 4.2; GMFCS III: 54 at age 3.1; GMFCS IV: 38 at age 2.6, and at GMFCS V: 18 at age 0.9. In conclusion, this is the first national population-based study following motor development in CP. Five distinct curves reported in previous controlled research studies were confirmed. Our study adds knowledge about motor development captured in children's everyday context.
|
|
| 18. |
- Löwing, Kristina, et al.
(författare)
-
Do Infants at Risk of Developing Cerebral Palsy or Other Neurodevelopmental Disorders Learn What They Practice?
- 2020
-
Ingår i: Journal of Clinical Medicine. - : MDPI AG. - 2077-0383. ; 9:7
-
Tidskriftsartikel (refereegranskat)abstract
- Through secondary analyses of the Small Step. Randomized Control Trial, we tested the hypothesis that children at risk of developing cerebral palsy (CP) or other neurodevelopmental disorders would learn what they practice, i.e., that they would have a more rapid development within the specifically trained foci (hand use or mobility) of each time period compared to the development rate within the foci not trained at that time. Nineteen infants (6.3 (1.62) months corrected age) included in the Small Step program were assessed at six time points during the intervention. For statistical analysis, general and mixed linear models were used, and the independent variables were the Peabody Developmental Motor scale (stationary, locomotion, grasping and visuomotor sub scales), the Gross Motor Function Measure-66 and the Hand Assessment for Infants. Outcomes related to gross motor function improved significantly more after mobility training than after hand use training, while fine motor function was improved to the same extent following both training types. Significantly higher improvements after the first training period were seen in one out of three outcome measures in both gross and fine motor assessments. The improvements observed were all independent of diagnosis at two years. The concept “you learn what you practice” was most clearly confirmed in the case of gross motor development.
|
|
| 19. |
- Löwing, Kristina
(författare)
-
Goal-directed therapy for children with cerebral palsy
- 2010
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aims of the thesis were to study the effects of goal-directed therapy (GDT) in children with cerebral palsy (CP) in an ecological setting, using the ICF-CY as a frame of reference, and to determine the reliability of the selective motor control (SMC) scale. Measures included in this thesis were represented in the domains of body function/structure and activity and participation. A specific interest was directed towards the SMC scale, since associations with gross motor activity have previously been detected. During the past few decades, the aim with therapy for children with CP has gradually moved from normalisation to activity and participation in meaningful life situations. Modern theories of motor development, motor control and motor learning support a treatment philosophy in which children with CP are encouraged to actively search for optimal strategies to accomplish meaningful activities and are given optimal possibilities to practice in their everyday environments. Today emphasis is also made to actively include the family. There is now growing evidence in support of GDT, even though there is a variation in the therapy setting, the level of child/family s involvement in choosing the goals and the therapy duration. A specific interest were if GDT could give beneficial effects in comparison to Activity focused therapy (AT), what the long-term effects on gross motor capacity and goal attainment were and if body functions measures (SMC, Passive Range of Motion (PROM) and Modified Ashworth Scale (MAS)) were affected after GDT. The inter-rater reliability of the SMC scale was evaluated by three assessors who simultaneously and independently scored the child s ability to dorsiflex the ankle. A consecutive sample of 40 children with CP, 3-16 years and in GMFCS I-V, was examined. The results revealed fair/good to strong inter-rater reliability. The test-retest reliability was achieved through a second examination of 29 children at a different occasion. Weighted Kappa statistics revealed strong test-retest reliability. Comparison of GDT and AT was completed, with respect to everyday activities and gross motor capacity. Habilitation centres recruited 44 children, 1-6 years, 25 boys, GMFCS I-IV, MACS I-V, 27 bilateral CP and 17 unilateral CP. Focus with therapy in the GDT group (n=22) was directed towards individualized family selected goals with participation in group training, while focus in therapy in the AT group (n=22) was directed towards generalized aims with individualized therapy sessions. Evaluations after 12 weeks revealed significantly higher improvements in the GDT group in comparison to the AT group in both everyday activities and gross motor capacity. Longitudinal investigation of gross motor capacity (GMFM-66) and goal attainment (GAS) in children receiving GDT (n=22) was accomplished by repeated assessments before, during and after a 12 week period of GDT. In addition, evaluations of SMC, PROM and MAS were completed before and after therapy. The assessments of gross motor capacity before GDT were stable. During and after the 12 weeks therapy, gross motor capacity improved significantly, whereas the long-term follow-up assessments did not reveal any further improvement. The goals were gradually reached to or above the expected level at the end of therapy. The long-term follow-up assessments demonstrated a gradual progress towards higher performance, with no further change in gross motor capacity. No changes in SMC, PROM or MAS were detected. Explorations of relationships between family selected goals and scores on standardized measures were performed using the ICF-CY as a classification system. The 110 goals from children participating in GDT were used. The meaningful concept of the expected level in the goals were coded and linked to the ICF-CY. The children s baseline assessments and change scores from standardized measures were used to explore the relationships. All GAS-goals were classified in the Activity and Participation domain within ICF-CY. The number of GAS-goals in the Mobility chapter and in the Self-Care chapter correlated to baseline scores in standardized measures. The change scores in standardized measures correlated to goal attainment in the Mobility chapter and in the Self-Care chapter. Beneficial effects in gross motor capacity and everyday activity were detected after GDT. The SMC scale demonstrated moderate to strong reliability.
|
|
| 20. |
|
|
