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Parents´ perception of the quality of two intensive training programmes for children with Cerebral Palsy
Linköping University, Department of Medicine and Health Sciences, Physiotherapy. Linköping University, Faculty of Health Sciences.
Linköping University, Department of Medicine and Health Sciences, Physiotherapy. Linköping University, Faculty of Health Sciences.
Linköping University, Department of Medicine and Health Sciences, Physiotherapy. Linköping University, Faculty of Health Sciences. ( Landstinget i Östergötland; Centre for Public Health Sciences; Centre for Public Health Sciences; Folkhälsovetenskapligt centrum; Folkhälsovetenskapligt centrum)
2007 (English)In: Developmental Medicine and Child Neurology, ISSN 0012-1622, Vol. 49, no 2, 93-100 p.Article in journal (Refereed) Published
Abstract [en]

This study explored parents' perceptions of the service quality of two intensive training programmes and the association between perceived service quality and predefined influential factors. Parents of 31 males and 19 females with spastic, dyskinetic, and ataxic cerebral palsy (mean age 8y 7mo [SD 3y 7mo]; range 3–16y), and Gross Motor Function Classification System Level I n=1; Level II n=9; Level III n=8; Level IV n=20; and Level V n=12 were included. Functional outcome had been evaluated previously with the clinical measures Gross Motor Function Measure-88, the Pediatric Evaluation of Disability Inventory -Functional Skills, and the Self-reported Individualized Goal Measure, before and after a 4-week intensive training period (ITP). The two training programmes used were Lemo and Move&Walk. After the ITP, a telephone interview was performed with the same cohort, using the Patient perspective On Care and Rehabilitation process. Data on previous experiences, expectations, and severity of disability were collected before the ITP, and data on achieved expectations afterwards. Previous experiences of the training programme, high expectations of improvements, achieved expectations, gross motor capacity improvements, and intensive training at the child and youth rehabilitation centre were associated with increased probability of fulfilment of needs. Severity of disability was associated with decreased probability of fulfilment of needs and functional improvements. Most parents perceived high service quality, and achieved expectations were influenced by high service quality rather than by perceived functional improvements. This suggests that needs other than functional improvements must be explained and acknowledged.

Place, publisher, year, edition, pages
2007. Vol. 49, no 2, 93-100 p.
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-12948DOI: 10.1111/j.1469-8749.2007.00093.xOAI: oai:DiVA.org:liu-12948DiVA: diva2:17504
Available from: 2008-02-13 Created: 2008-02-13 Last updated: 2009-05-19
In thesis
1. Intensive training in group for children with Cerebral Palsy: Evaluation from different perspectives
Open this publication in new window or tab >>Intensive training in group for children with Cerebral Palsy: Evaluation from different perspectives
2007 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

There is a need of more evidence‐based knowledge of different treatment/training‐approaches for children with Cerebral Palsy (CP) to better describe the objectives of interventions, effects on functioning and fulfilment of health care needs. The general aim of this thesis was to evaluate the effectiveness of intensive training in groups (ITGs) with a habilitation approach and a conductive education approach. In addition, this thesis explored different meanings of participation in ITGs to parents from a parent perspective. This thesis consists of two parts, a quantitative evaluation of the effectiveness of two ITGs (paper I‐III) and a qualitative study exploring parents’ different ways of experiencing ITGs (paper IV). Fifty‐four children, 3‐16 years old, with different types of CP, intellectual capacity and level of gross motor function, participated with their parents in a four weeks ITG with a short‐term and a one‐year follow‐up (paper I‐III). The second sample was strategically composed of parents to 15 children with CP with experiences of ITGs in different settings.

The results showed that the proportion of clinically significant change in gross motor capability, functional skills or self‐reported individualized goal measure didn’t show any major differences between the two ITGs. One period of ITG facilitated small clinical and parent reported improvements in functioning for the short‐term. Nine children out of 54 made a clinically significant improvement in gross motor capability (GMFM‐88 total score); 36 children improved if an improvement in any dimension A‐E was counted for. Twenty‐two children out of 52 improved in one of the domains self‐care, mobility and social function (PEDI Functional Skills). Twenty‐eight parents out of 54 perceived a clinically significant improvement on the self‐reported individualized goal measure. Most individualized goals dealt with motor activities and movement‐related body functions in both ITGs. The self‐reported individualized goal measure was not found to be more sensitive to change than the clinical measures.

The one‐year follow‐up showed that children had a stable level of functioning. No child deteriorated on the clinical measures short‐term and at the one‐year follow‐up. A higher proportion of change was seen in the social function domain at the one‐year follow‐up, indicating a better potential to change in social function than in gross motor function. The majority of children had a high consumption of training delivered by the Child and Youth Habilitation and merely half of the group continued with repeated ITGs. The differences in functional outcome between children continuing with repeated ITGs compared with only customary Child and Youth Habilitation were limited to a higher proportion of improvements in social functioning.

Parents perceived a high service quality in both ITGs. To parents, fulfilment of health care needs was as important as functional outcome. The probability for high service quality was associated with previous experience of the ITG, high expectations of improvements, if expectations and improvements in gross motor capability were achieved and if the child participated in the ITG with the habilitation approach. Therapists in the habilitation approach were more involved in discussions with parents about expectations for the ITG and knowledge exchange than conductors were, indicating more familycenteredness.

The qualitative study points to a variety of parental needs that may be met at ITGs but also indicates some problems that should be addressed. Five overarching meaning categories of ITGs were described: ITGs as knowledge promotion, as a complementary training resource, as a bracket to ordinary life, as building up relations with therapists, and as a leisure‐activity. An additional category – “ITGs as risk for ill‐being” – subsumed different kinds of problems that may arise. Conceptions suggest that ITGs contribute to parents’ improved knowledge, support and well‐being, but ITGs could also negatively influence family‐functioning.

Professionals and parents need to discuss parents’ previous experiences of ITGs, expectations of functional improvements, the functioning of the child and health care needs in order to individualize goals for ITGs and make the objectives for participation clear. There were no major differences in effectiveness between the two ITGs, a habilitation approach and conductive education approach. Various training approaches should be chosen depending on the child’s and family’s needs. In the choice between different training approaches it is of equal importance to acknowledge functional needs of the child as well as health care needs of the child and parent.

Place, publisher, year, edition, pages
Institutionen för medicin och hälsa, 2007
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1008
Keyword
Cerebral Palsy (CP), children, rehabilitation, Early Intervention (Education), Exercise therapy, Goals, Parents
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-11046 (URN)978-91-85831-15-9 (ISBN)
Public defence
2007-09-21, Berzeliussalen, Campus US, Linköpings universitet, Linköping, 13:00 (English)
Opponent
Supervisors
Available from: 2008-02-13 Created: 2008-02-13 Last updated: 2009-05-19

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Ödman, PiaKrevers, BarbroÖberg, Birgitta

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