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Intensive training in group for children with Cerebral Palsy: Evaluation from different perspectives
Linköping University, Department of Medicine and Health Sciences, Physiotherapy. Linköping University, Faculty of Health Sciences.
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 [en]
Cerebral Palsy (CP), children, rehabilitation, Early Intervention (Education), Exercise therapy, Goals, Parents
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-11046ISBN: 978-91-85831-15-9 (print)OAI: oai:DiVA.org:liu-11046DiVA: diva2:17506
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
List of papers
1. Effectiveness of intensive training for children with Cerebral Palsy: a comparison between child and youth rehabilitation and conductive education
Open this publication in new window or tab >>Effectiveness of intensive training for children with Cerebral Palsy: a comparison between child and youth rehabilitation and conductive education
2005 (English)In: Journal of Rehabilitation Medicine, ISSN 1650-1977, Vol. 37, no 4, 263-270 p.Article in journal (Refereed) Published
Abstract [en]

Objectives: To compare the short-term effectiveness of 1 intensive training period in child and youth rehabilitation with Move&Walk conductive education and describe the effects of 1 intensive training period in terms of changes at 1 year. The amount and influence of additional consumption of training during the 1-year follow-up was also analysed.

Design: Quasi-experimental with 2 groups: Lemo (n=23) and Move&Walk (n=29).

Patients: A total of 52 children with cerebral palsy, age range 3–16 years.

Methods: Data included repeated measures with Gross Motor Function Measure (GMFM) and Pediatric Evaluation of Disability Inventory–Functional Skills (PEDI-FS). Data on additional consumption of training was collected at the 1-year follow-up.

Results: There was no difference in proportion of change on the clinical measures between the training programmes, except for a higher proportion of improvement on the GMFM total score in Lemo. At the group level, small improvements were shown on GMFM and PEDI FS in the short-term and on PEDI FS only at 1 year. A higher proportion of children who participated in repeated intensive training periods showed improved social functioning.

Conclusion: No major differences were shown between the 2 training programmes. One intensive training period facilitated small improvements in gross motor function. The majority of children had a high consumption of training during the 1-year follow-up and the added value of repeated intensive training periods was limited.

Keyword
evaluation studies, exercise therapy, cerebral palsy, treatment outcome
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-12946 (URN)10.1080/16501970510032622 (DOI)
Available from: 2008-02-13 Created: 2008-02-13 Last updated: 2009-06-09
2. Effectiveness and expectations of intensive training: a comparison between child and youth habilitation and conductive education
Open this publication in new window or tab >>Effectiveness and expectations of intensive training: a comparison between child and youth habilitation and conductive education
2006 (English)In: Disability and Rehabilitation, ISSN 0963-8288, Vol. 28, no 9, 561-570 p.Article in journal (Refereed) Published
Abstract [en]

Objective. To compare the effectiveness of two intensive training-programmes from a professional and parent perspective. To describe and compare the type of expectations of the two intensive training programmes with the self-reported individualized goals.

Design. Quasi-experimental with two groups.

Setting and intervention. Traditional health care and conductive education.

Patients and their parents. Fifty-four children with cerebral palsy, 3-16 years old.

Methods. Data included a self-reported individualized goal measure (SRIGM), before and after the ITP. Individualized goals were classified according to the International Classification of Functioning (ICF). Clinical measures (CM) included repeated measures with Gross Motor Function Measure (GMFM) and Pediatric Evaluation of Disability Inventory—Functional Skills (PEDI-FS).

Results. Twenty-eight parents out of 54 perceived a clinically significant improvement on the SRIGM with no significant difference between the training programmes. Most individualized goals were formulated in the domain of Mobility (115 out of 248) and Neuromusculoskeletal and movement-related functions (64 out of 248 goals) of ICF in both training programmes. There was no difference in the proportion of improvement measured with SRIGM compared to the CM, if an improvement in any dimension in GMFM or domain in PEDI FS was counted.

Conclusion. There were no major differences in outcome and expectations between the training programmes. Parents' expectations were mainly directed towards improvement in prerequisites of motor function and mobility skills. The SRIGM confirmed the outcome on the CM.

Keyword
Evaluation studies; exercise therapy; cerebral palsy; treatment outcome and goals
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-12947 (URN)10.1080/00222930500218821 (DOI)
Available from: 2008-02-13 Created: 2008-02-13 Last updated: 2009-06-09
3. Parents´ perception of the quality of two intensive training programmes for children with Cerebral Palsy
Open this publication in new window or tab >>Parents´ perception of the quality of two intensive training programmes for children with Cerebral Palsy
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.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-12948 (URN)10.1111/j.1469-8749.2007.00093.x (DOI)
Available from: 2008-02-13 Created: 2008-02-13 Last updated: 2009-05-19
4. Parents conceptions of intensive group training. The case of cerebral palsy
Open this publication in new window or tab >>Parents conceptions of intensive group training. The case of cerebral palsy
2009 (English)In: Disability and Rehabilitation, ISSN 0963-8288, Vol. 31, no 4, 293-301 p.Article in journal (Refereed) Published
Abstract [en]

Purpose. The aim was to explore what wants and needs intensive group training (IGT) fulfil for parents of children with cerebral palsy (CP) and what problems that may arise due to participation. Methods. A phenomenograpical approach was used. Semi-structured interviews were conducted to elicit information about what participation means to parents. Results. Five overarching categories expressing positive functions of IGT were identified: IGT as knowledge promotion, as a complementary training resource, as a bracket to ordinary life, as a means to promote relations with therapists, and as a leisure-activity. One category: IGT as risk for ill-being expresses perceived problems. Each category is in turn divided into a number of subconceptions-13 conceptions of this kind were identified. Conclusions. The conceptions express positive and negative functions of IGT as perceived by parents. These functions in turn can be considered as reflections of basic wants and needs. The results demonstrate that IGT have a potential to contribute to feelings of enhanced care competence among parents, of being supported and of increased strength and vitality. All parents did not have needs of participation in IGT for themselves. There is also a risk that IGT is experienced as an additional burden and may have negative effects on family-functioning.

Keyword
Cerebral palsy, therapeutics, qualitative research, conductive education, intensive group training
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-17159 (URN)10.1080/09638280801945709 (DOI)
Note
This is an electronic version of an article published in:Pia Ödman, Bengt Richt and Birgitta Öberg, Parents’ conceptions of intensive group training. The case of cerebral palsy, 2009, DISABILITY AND REHABILITATION, (31), 4, 293-301.Disability and rehabilitation is available online at informaworld:http://dx.doi.org/10.1080/09638280801945709Copyright: Taylor Francis http://www.informaworld.com/Available from: 2009-03-12 Created: 2009-03-07 Last updated: 2009-03-23Bibliographically approved

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