2013 Developmental Neurorehabilitation, August 2013; 16(4): 217–229 The effect of interventions based on the programs of The Institutes for the Achievement of Human Potential and Family Hope Center STEPHEN VON TETZCHNER 1 , MARIANNE VERDEL 2 , BRITA GILHUUS BARSTAD 3 , ELSE MARIT HOLEN GRAVA ˚ S 3 , REIDUN JAHNSEN 3 , SISSEL KRABBE 3 , KJERSTI RAMSTAD 3 , HELLE SCHIØRBECK 3 , OLA H. SKJELDAL 4 , RANDI SKARPAAS TRANHEIM 3 , BIRGITTE BANG 5 , BIRGIT JENSEN 5 , HANNE JENSEN 5 , LONE KILDEMOES 2 , JANNE MOTTLAU 6 , KASPER V. RASMUSSEN 2 , & HANNE YTTING 2 1 Department of Psychology, University of Oslo, Oslo, Norway, 2 Center for Rehabilitation of Brain Injury, Copenhagen, Denmark, 3 Department of Neuroscience, Oslo University Hospital, Oslo, Norway, 4 Vestre Viken Hospital Trust, Oslo, Norway, 5 Glostrup Regional Hospital, Copenhagen, Denmark, and 6 Private Practice, Copenhagen, Denmark (Received 27 September 2012; revised 29 September 2012; accepted 29 September 2012) Abstract Objective: To compare the effect of the programs of IAHP and FHC with ordinary community-based programs. Method: Two-year observational study of two groups of children aged 2–15 years who were following the IAHP and FHC programs (N ¼ 18) or community-based programs (N ¼ 17), with additional material from interviews with parents, and a retrospective study (N ¼ 9) based on file records and parent interviews. Results: Changes in motor and cognitive function, language and behavior in the IAHP/FHC group well below the claims made by these programs, and few differences between this group and the comparison group. Intervention satisfaction lower prior to IAHP/FHC intervention than in the comparison group, and increased when moved to IAHP and FHC, independent of the children’s progress. Conclusion: The substantial claims of superiority compared to other interventions made by IAHP and FHC are not supported, but parents appear to be met in a positive manner in these programs. Keywords: Doman treatment, neurodevelopmental outcome, parent satisfaction Introduction In recent years, there has been a strong focus on the empirical bases of interventions provided to children with disabilities [1, 2]. However, many habilitation programs lack a clear evidence base [3, 4], including more unconventional programs like Conductive edu- cation, Advanced Biomechanical Rehabilitation, The Kozijavkin Method, the Doman methodology of The Institutes for the Achievement of Human Potential (IAHP), and Family Hope Centre (FHC) [5]. The present study investigates the efficacy of the IAHP and FHC programs. IAHP claims that its program is effective with conditions such as cerebral palsy, epilepsy, spina bifida, sensory deficits, intellectual impairment, autism, and eating disorders [6, 7]. It builds on the basic idea from Fay [8] that the individual has to go through a fixed set of phases in order to achieve normal development, and that damage to an early developing part of the brain may block or hinder the later development of undamaged parts. The aim of the treatment is to provide intensive stimulation to the part of the brain that blocks development. The program consists of half-hour sessions which are repeated as many as 25–30 times throughout most of the child’s waking hours, seven days a week, for one or more years, and includes a variety of elements (see http://www.cpdiscovery.com/for descriptions of many of the elements). One main underlying assumption is that motor stimulation can ‘track’ new functional patterns of nerve cells in the brain, for example, develop a ‘movement pattern’ by moving the child’s limbs in crawling motions, and this part of the treatment is usually referred to Correspondence: Prof. Stephen von Tetzchner, Department of Psychology, University of Oslo, P. O. Box 1094 Blindern, N-0317 Oslo, Norway. Tel: þ47 22845161. Fax: +47 22845001. E-mail: [email protected]ISSN 1751–8423 print/ISSN 1751–8431 online/13/040217–13 ß 2013 Informa UK Ltd. DOI: 10.3109/17518423.2012.739211 Dev Neurorehabil Downloaded from informahealthcare.com by York University Libraries on 10/18/13 For personal use only.
Transcript
2013
Developmental Neurorehabilitation, August 2013; 16(4): 217–229
The effect of interventions based on the programs of The Institutesfor the Achievement of Human Potential and Family Hope Center
STEPHEN VON TETZCHNER1, MARIANNE VERDEL2, BRITA GILHUUS BARSTAD3,ELSE MARIT HOLEN GRAVAS3, REIDUN JAHNSEN3, SISSEL KRABBE3,KJERSTI RAMSTAD3, HELLE SCHIØRBECK3, OLA H. SKJELDAL4,RANDI SKARPAAS TRANHEIM3, BIRGITTE BANG5, BIRGIT JENSEN5,HANNE JENSEN5, LONE KILDEMOES2, JANNE MOTTLAU6,KASPER V. RASMUSSEN2, & HANNE YTTING2
1Department of Psychology, University of Oslo, Oslo, Norway, 2Center for Rehabilitation of Brain Injury, Copenhagen,
Denmark, 3Department of Neuroscience, Oslo University Hospital, Oslo, Norway, 4Vestre Viken Hospital Trust, Oslo,
(Received 27 September 2012; revised 29 September 2012; accepted 29 September 2012)
AbstractObjective: To compare the effect of the programs of IAHP and FHC with ordinary community-based programs.Method: Two-year observational study of two groups of children aged 2–15 years who were following the IAHP and FHCprograms (N¼ 18) or community-based programs (N¼ 17), with additional material from interviews with parents, and aretrospective study (N¼ 9) based on file records and parent interviews.Results: Changes in motor and cognitive function, language and behavior in the IAHP/FHC group well below the claimsmade by these programs, and few differences between this group and the comparison group. Intervention satisfaction lowerprior to IAHP/FHC intervention than in the comparison group, and increased when moved to IAHP and FHC,independent of the children’s progress.Conclusion: The substantial claims of superiority compared to other interventions made by IAHP and FHC are notsupported, but parents appear to be met in a positive manner in these programs.
In recent years, there has been a strong focus on theempirical bases of interventions provided to childrenwith disabilities [1, 2]. However, many habilitationprograms lack a clear evidence base [3, 4], includingmore unconventional programs like Conductive edu-
cation, Advanced Biomechanical Rehabilitation, The
Kozijavkin Method, the Doman methodology of The
Institutes for the Achievement of Human Potential
(IAHP), and Family Hope Centre (FHC) [5]. Thepresent study investigates the efficacy of the IAHPand FHC programs.
IAHP claims that its program is effective withconditions such as cerebral palsy, epilepsy, spinabifida, sensory deficits, intellectual impairment,autism, and eating disorders [6, 7]. It builds on thebasic idea from Fay [8] that the individual has to go
through a fixed set of phases in order to achievenormal development, and that damage to an earlydeveloping part of the brain may block or hinder thelater development of undamaged parts. The aim ofthe treatment is to provide intensive stimulation tothe part of the brain that blocks development. Theprogram consists of half-hour sessions which arerepeated as many as 25–30 times throughout most ofthe child’s waking hours, seven days a week, for oneor more years, and includes a variety of elements (seehttp://www.cpdiscovery.com/for descriptions ofmany of the elements). One main underlyingassumption is that motor stimulation can ‘track’new functional patterns of nerve cells in the brain,for example, develop a ‘movement pattern’ bymoving the child’s limbs in crawling motions, andthis part of the treatment is usually referred to
Correspondence: Prof. Stephen von Tetzchner, Department of Psychology, University of Oslo, P. O. Box 1094 Blindern, N-0317 Oslo, Norway.Tel: þ47 22845161. Fax: +47 22845001. E-mail: [email protected]
as ‘patterning’. Active training of crawling mayutilize boards that slope downwards. The use ofwheelchairs and walking aids is discouraged. Theintellectual program consists of an educationalstimulation program with a great emphasis onreading with flash cards. In addition, the programincludes respiratory masking, regulation of nutri-tional intake and various types of diets. Medicationsare discouraged, even medicines for seizures [7, 9].The families usually visit IAHP for one week twice ayear, where the child is assessed and the families aregiven detailed programs for training the child athome. Doman regards parents’ efforts as the mostimportant intervention resource and IAHP requiresthat at least one parent is working at home tomanage the helpers and implement some of theexercises in the program [10].
There are few studies of the effect of the IAHPprogram, and most of them date back in time [11,12]. Doman et al. [13] reported improved mobilityfor 76 children aged one to nine years with congen-ital or acquired brain injury after a two-year periodwith this treatment, but there was no comparisongroup or statistical analysis, and hence it is notpossible to say how the development of the childrenwould have been with other forms of treatment.Neman et al. [14] compared a group of children whoreceived seven months of patterning treatment with agroup of children who took part in various activitiesoutdoors and indoors, and a group of children whodid not receive any treatment. Both of the treatmentgroups performed better than the children who didnot receive any treatment, but the patterning groupdid not achieve better results than the comparisongroup. More recently, IAHP reports considerableimprovements in 2364 children and adults whoattended the program between 1998 and 2010, butprovides no documentation (downloaded onDecember 9, 2011, http://www.iahp.org/).
Other studies have found that children in com-parison groups receiving other forms of treatment –or no special treatment at all – achieved equally goodor better outcomes than children who followed theIAHP program [15–18]. Over a period of 30 years,several professional organizations have pointed tothe excessive nature of the claims made by IAHP,the lack of theoretical foundation and empiricalsupport, and the heavy demands that IAHP lay onfamilies, and warned against offering treatmentbased on this methodology [12, 19, 20]. In spite ofthis, families have continued to attend IAHP andinterview studies show that parents who have triedthe IAHP program tend to be positive about it[21, 22].
The FHC program is based on IAHP methodsand FHC claims to be effective with the samedisability groups (http://www.familyhopecenter.org/).
The assessment and parent guidance is organized in asimilar way as IAHP. The FHC program also coversmost of the waking hours of the child, but includesmore training of activities of daily living and social-ization, and accepts to some extent that the parentsinclude elements from other therapies. The child mayattend school a few hours per week and the parentsmay, for example, use manual signs to support theirspeech. According to the FHC web site, ‘The averageFHC child, all diagnoses, improved 254% more thanthe average child in national samples’ but there doesnot seem to be any published research on the efficacyof this program. An unpublished report [23] onchildren with developmental disabilities, autismspectrum disorders, cerebral palsy, and ‘brain dys-function’ makes similar claims.
According to results summarized on the web sitesof IAHP and FHC, families can expect very largeimprovements in their children in the areas ofperception, movement, cognition and language ifthey follow these program, and significantly betterthan children following ordinary intervention (http://www.iahp.org/; http://www.familyhopecenter.org/).It is therefore understandable that some parentschoose these programs. Moreover, one reason whyfamilies continue to attend IAHP and FHC in spiteof warnings may be that the studies that reportedsimilar results for IAHP and other treatments alsohave weaknesses because they investigated theeffects of low-intensive programs based on theIAHP methodology. The most cited Sparrow andZigler study [17] provided only two hours of Domantraining per day five days per week for one year, atotal of 520 hours (if implemented all weeks of theyear), compared to the 3650 hours if implementedten hours daily. In light of current evidence for theeffect of intensive intervention [24, 25], the lowintensity level means that also the negative findingsare inconclusive. It is possible that a high intensiveIAHP treatment would be more effective.
There are still a relatively large number of familieswho follow the IAHP and FHC programs, about 200new families attend IAHP each year (http://www.iahp.org/). The programs require considerableresources, leave little room for ordinary child activ-ities and take up most of the family’s time. Thisemphasizes the need for further evaluation of theireffectiveness. The present study compares interven-tions as they are provided by IAHP and FHC withinterventions provided by the ordinary habilitationservices. The families who followed the IAHP andFHC programs and the families who attended theordinary services had chosen their child’s programbefore they gave consent to take part in the project,and all the programs were funded by the publicNorwegian and Danish health and social services.Program fidelity is thus likely to be comparable to
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that of other families who follow these programs.The main research question is whether childrenfollowing the programs of IAHP and FHC showsignificantly better development than children fol-lowing community-based programs.
Method
This observational study is a collaboration betweenNorwegian and Danish research groups and consistsof a prospective two-group design with IAHP andFHC intervention (N¼ 18) compared to commu-nity-based intervention (N¼ 17) with additionalmaterial from file records and interviews, and aretrospective study (N¼9) based on file records andinterviews.
Participants
A search was made for families with children (18years or younger) who were following the IAHP andFHC programs or planned to follow one of theseprograms (prospective group). The project alsoincludes children who were not seen prospectivelybut who had been following these programs for atleast one year and were still a part of the program orhad left the program within the last five years(retrospective group). An information letter aboutthe project was relayed to relevant families by thehospitals that authorize funding for these interven-tions, and the parents who chose to participate sent aletter of consent directly to the project. It may benoted that several families withdrew after havinggiven consent to take part in the project (Figure 1).One child was found to have a progressive disorderand was omitted from the study, and sadly, one childdied. When a child following the IAHP and FHCprograms had joined the project, in order to recruit acomparison child, a search was made in community-based habilitation units and special preschools andschools for a child with similar characteristics, usinggeneral descriptions. Local staff relayed the infor-mation letter to potential families, who then returnedthe letter of consent if they wanted to take part in theproject.
Ethics
The project was approved by the Ethics ResearchCommittees in Norway and Denmark. The pro-grams of IAHP and FHC are invasive and contro-versial, which prohibited random allocation. Thefamilies had chosen the intervention program theywanted for their child before they were recruited andwithout any form of influence from the project.Some of the parents who were following thecommunity-based services had considered IAHP
and FHC, as well as other programs, but hadchosen the program provided by the municipalityand the county. In accordance with the requirementsof the Ethics committee, it was stated in theinformation letter that the participants were free towithdraw from the project at any time without givingany reason, and that they were not obliged to stay inthe intervention program they had chosen.
Procedure
Most assessments were made at a hospital, but somealso in kindergarten, at school, or at home, depend-ing on parent preferences and practical issues. Thechildren in the prospective group were first seenwhen they joined the project, which was either at thestart of the child’s IAHP or FHC intervention orafter the child had followed this intervention forsome time. Children should then be seen after 12and 24 months but it proved difficult to keep thisschedule. The assessments sometimes implied a longtravel for the family, and many of the children wereseverely disabled and thus vulnerable to illness,especially in winter, which sometimes hinderedassessments. Also illness in the family and otherfamily circumstances sometimes made it difficult tomake the assessment at the time that was scheduled.On few occasions, the child did not cooperate andproved inaccessible for some of the assessments.
Due to the reasons mentioned above, the length ofthe periods between assessments varied somewhat.Some children were not seen at all follow-ups andsome were seen well after the scheduled 12 and 24months. Some children joined the project too late tobe included in the last assessment. This means thatthe number of children in the groups varies some-what between observations. In order to make indi-vidual and group results as comparable as possible,the difference scores were time-corrected, based onthe assumption that changes in performance wereequal throughout the time span between two obser-vations. For example, if a child gained eight monthsin developmental age score in 16 months, the gain inthe first 12 months of this period would be assumedto be an age score of six months. Similarly, if thechild was seen at 10 and 24 months, gaining fourmonths in age score during the first 10-month periodand gaining an age score of seven months in the 14-month period from 10 to 24 month, a gain of onemonth is supposed to have taken place in the two-month period from 10 to 12 months. This gives again of five months (4 þ 1) in age score in the first12 months (from start to 12 months), and a gain ofsix months (7 � 1) in age score in the second12-month period (from 12 to 24 months).
Assessments. Significant efforts were made to try toregister any small or large change in skills and
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abilities taking place during the project period. Allassessments were made by Norwegian and Danishteams consisting of a paediatrician, a physiothera-pist, an occupational therapist, two child neuropsy-chologists, and an ophthalmologist who wereexperienced in assessing children with disabilities,including children with severe motor disorders. Theassessments were usually made with two profes-sionals present. One of them made notes andoperated the video camera. The assessments werevideotaped when the parents allowed it, and thevideotapes were consulted if there was uncertaintyabout the result.
The children were given a thorough assessment,applying the standardized instruments that were
thought to capture their age and developmental levelbest. However, in order not to underestimate thechildren in any phase of the project, attempts werealways made to elicit skills that were more advancedthan the children’s appearance and first performanceseemed to indicate.
The medical assessment consisted in a generalhealth assessment, including anthropometric mea-sures and questions about the child’s medical issuesduring the project period. A separate visual assess-ment with standard instruments included visualacuity and contrast, colour vision, visual field,refraction error and strabismus, eye coordinationand stereoscopic vision, ocular motor function,object following, and accommodation.
Consents received
IAHP/FHC group N = 44;Comparison group N = 17
Prospektive IAHP/FHC group N = 30
Comparison group N = 17
Subject excluded, progressive disease N = 1
Subject mortality due to disease N = 1
Subjects retracted consent
-Prior to first assessment N = 5
-Following 1 or 2 assessments N = 5
Subject attrition in IAHP/FHC group N = 12
Subject attrition in comparison group N = 0
Prospektive IAHP/FHC group N = 18
Comparison group N = 17
Assessed at first observation and after 12 months
IAHP/FHC N = 4
Comparison N = 5
Assessed at first observation and after 12 and 24 months
IAHP/FHC N = 12
Comparison N = 12
Assessed at first observation and after 24 monthsIAHP/FHC N = 2
Comparison N = 0
Retrospective IAHP/FHC group N = 14
Retracted consent
- Prior to interview N = 2
- Following interview N = 3
Subject attrition N = 5
Retrospective group N = 9
Figure 1. Flow chart of subject participation and attrition.
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The functioning of the children varied consider-ably and a range of instruments were used (Table I).GMFM 66 is a valid and reliable tool for assessinggross motor function [37]. GMFM 88, whichGMFM 66 is based on, is translated intoNorwegian with high inter-tester reliability [38].QUEST is a well-proven instrument for assessing thefunctioning of upper extremities [27, 39]. Both ofthese instruments are criterion based. Cognition andlanguage were assessed with standard instrumentswith well established psychometric properties [40].In order to compare results from different instru-ments, age scores and age score equivalents wereused whenever possible.
Interviews. The parents were interviewed at eachassessment about the implementation of the child’sprogram and the child’s progress in different areas,health situation and social participation. At the endof the interview, the parents filled in check listsindicating their satisfaction with the child’s develop-ment and the services they had received on a scalefrom 0 to 5.
Records. Records were used to obtain informationabout the local professionals’ evaluations of theretrospective children’s development prior to andthroughout their IAHP/FHC intervention. All fam-ilies had given consent that the project could obtainmedical, psychological and educational records. Thereports were scrutinized for test results and descrip-tions of developmental performance and skills thatcould be allocated an age norm. Using a ‘milestone’approach [41], a list of descriptive statements thatcan be allocated an age where 50% of childrenmaster it was compiled on the basis of items instandardized developmental tests, observationschedules and research articles. The final list con-tains 235 items with a milestone age for fine or gross
motor skills, and 317 items for cognitive skills,receptive and expressive language skills, and socialskills, mainly skills that children typically acquireduring the early years of life, such as ‘follows objectwith gaze’ (one month), ‘stands with support fromhands’ (eight months), ‘says two words’ (14months), and ‘builds tower with six blocks’ (23months). Only descriptions that correspond pre-cisely to a developmental age established throughresearch were included. Developmental age equiva-lents from test results and milestone age scores forgross and fine motor skills, cognition, and receptiveand expressive language, were registered in the fiveyears prior to initiation of IAHP or FHC and up tothree years after.
Statistical analysis
Statistics were performed with PASW 18 andinclude descriptives, Cohen’s d and t tests forcomparing groups.
Results
Table II shows the background data of the children.None of the differences between the two prospectivegroups were significant. At the start, most of thefamilies followed IAHP, but five families changedfrom IAHP to FHC during the project. A fewfamilies included elements from other programs,which was also advocated by FHC, but these wereminor parts of the interventions. Before theyattended the IAHP or FHC programs, all thechildren were in kindergarten or school, except onewho started this training very early. Most receivedphysiotherapy, occupational therapy and specialeducation. These services were also part of thecommunity-based programs of the comparisongroup. These programs cover an ordinary schoolday, from about 9 am to 3 pm.
Medical assessment found no improvement ingeneral health conditions or change in frequency orseverity of seizures in any of the groups. Visualassessment found that four children in the Domangroup showed some improvement in visual func-tioning, nine showed no change, one child showedsomewhat poorer visual functioning, and four chil-dren had uncertain results or had missing data. Inthe comparison group, six children showed someimprovement in visual functioning, eight showed nochange, and three children had uncertain results ormissing data.
Motor skills are summarized in Table III. Therewas no significant difference between the groups onthe initial scores or difference scores of gross motorfunctioning (GMFM66). At one year, the IAHP/FHC group showed significantly higher score gain in
Table I. Assessment instruments.
Motor skills
Gross Motor Function Measure, GMFM66 [26]Quality of Upper Extremity Skills test, QUEST [27]
Cognition and language
Bayley Scales of Infant Development, BSID-II [28]Bayley Scales of Infant and Toddler Development, 3rd ed.,
Screening Test [29]Bracken Basic Concept Scale [30]British Picture Vocabulary Scales, BPVS [31]Leiter International Performance Scale – Revised [32]Reynell Developmental Language Scales [33]Wechsler Preschool Scale for Children [34]Wechsler Intelligence Scale for Children [35]Wechsler Abbreviated Scale of Intelligence [36]
Behavior
Bayley Scales of Infant Development, BSID-II [28]Leiter International Performance Scale – Revised [32]
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fine motor skills (Quest) than the comparison group,but at two years there was no difference. A scrutinyof individual data in Figure 2 indicates greatervariety in the IAHP/FHC group and two childrenwho showed high score gains in the first year,regressed back towards their initial level at twoyears. One child showed little change from start toone year and a large decrease in score from one totwo years.
Table III also shows the average developmentalage for cognition, receptive language, expressivelanguage and ‘global age’ which is the average ofthe child’s age scores in these domains. The differ-ence between chronological age and developmentalage indicates that most of the children were severelydisabled. Gains were modest after one and two years,in line with the children’s initial level of functioning.Effect sizes were small or modest, and similar in bothgroups. None of the group differences in changescores approached significance, and individualchange scores for cognition, receptive and expressivelanguage, and global score indicate a similar over-allpattern in the two groups (Figure 2). The analysis offile records did not reveal any reports of unexpectedchange in functioning in the retrospective group.
Table III includes the scores on the behaviorscales of Bayley II and Leiter-R. The comparisonchildren were given higher scores at project start, butthe group differences were not significant. Bothgroups showed positive change and for the children
who were evaluated with Bayley II, none of thedifferences in change scores were significant. Onboth Leiter-R behavior scales the comparison grouphad higher change scores at one and two years thanthe IAHP/FHC group, and at one year the differ-ences were significant. Effect sizes were also consid-erably larger in the comparison group.
In the first interview, the parents in the IAHP/FHC group rated most aspects of the interventionand many aspects of their child’s development priorto the IAHP/FHC intervention significantly lowerthan the comparison group (Table IV). In the lastinterview, the parents in the IAHP/FHC groupgenerally rated their child’s program and develop-mental progress higher than the comparison group.However, at this time the scores were also moresimilar to the comparison group, and most groupdifferences were not significant.
Discussion
Both the IAHP/FHC group and the comparisongroup showed developmental progress during theproject period in line with their initial functionallevel. The IAHP and FHC programs did notproduce higher positive change scores than theprograms followed by the children in the comparisongroup. On no measure did the children following theIAHP and FHC programs perform consistently
Table II. Description of the groups.
IAHP/FHCgroup(18)
Comparisongroup (17)
Retrospectivegroup (9)
Mean age in years;months 6;4 7;6 9;9(SD, Range) (6;2, 1;5–14;6) (6;3, 2;4–14;1) (2;9, 4;0–12;5)
Average years;months in IAHP/FHCat project start (range) 1;9 (0–6;2) 6;2 (1;8–11;7)
Elements from other programsHyperbaric oxygen therapy 4 1Advanced biomechanical rehabilitation 3 2Craniosacral therapy 1 1
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better than the children following the community-based programs. Neither did the record analysesreveal any unexpected development in the childrenin the retrospective group after they had joined theseprograms. Fay’s view of brain development pro-moted by IAHP and FHC is very different fromcurrent accounts of typical and atypical neuropsy-chological development [42, 43], and the AmericanAcademy of Pediatrics [12] states that the treatmentprogram ‘is based on simplistic theories’ (p. 150).A treatment may work well in practice even if thetheoretical underpinnings are incorrect, but thedevelopmental progress demonstrated by the chil-dren in the IAHP and FHC programs was muchbehind the progress reported on the home pages ofIAHP and FHC. For example, the average gain inlanguage comprehension over two years was eight
months and the majority performed well below adevelopmental age of three years, a level whichIAHP claims was passed by 90% of the children whofollowed their program (http://www.iahp.org/). Thedifference between the IAHP/FHC group and thecomparison group was nowhere near the 254%advantage claimed by FHC (http://www.familyhopecenter.org/).
Motor development is a main focus of theIAHP and FHC programs and this is therefore anarea where one might expect these programs tooutperform other programs. The majority of thechildren in the present study had poor motorfunction at project start and the gains in fine andgross motor skills were modest in both groups.According to the GMFM66 manual the averagescore gain over 12 months in children with cerebral
Table III. Base line scores on motor and behavioral assessment measures and age equivalent scores on cognitive, language, globalassessment measures at project start and change scores after one and two years.
IAHP/FHC group Comparison group
Mean SD n d Mean SD n d t p
Gross motorBase line 42.5 27.5 17 41.8 22.6 16 0.075 0.94Change one year 3.6 4.9 14 0.13 3.3 3.1 16 0.15 0.232 0.82Change two years 4.5 6.5 13 0.16 6.3 3.9 10 0.28 �0.790 0.44
Fine motorBase line 60.7 38.4 12 47.6 42.8 15 0.832 0.41Change one year 7.3 9.8 11 0.19 �1.2 5.5 14 �0.03 2.557 0.02*Change two years 0.8 11.3 9 0.02 0.7 9.4 8 0.02 0.027 0.98
CognitionBase line 26.6 26.1 17 33.1 31.7 14 �0.644 0.52Change one year 2.3 5.1 14 0.09 2.9 9.6 17 0.09 �0.227 0.82Change two years 7.3 8.9 14 0.28 11.4 15.6 10 0.36 �0.745 0.46
Receptive languageBase line 22.8 17.0 16 32.1 33.1 14 �0.986 0.33Change one year 2.7 6.9 11 0.16 5.9 5.2 13 0.18 �1.291 0.21Change two years 7.6 9.8 13 0.45 17.1 19.9 11 0.52 �1.517 0.14
Expressive languageBase line 27.4 29.0 15 37.0 38.8 11 �0.725 0.48Change one year 2.9 6.9 12 0.09 �0.4 7.8 10 �0.01 1.291 0.35Change two years 4.3 8.1 13 0.15 4.2 13.1 9 0.11 0.005 1.00
GlobalBase line 27.1 26.2 17 32.0 28.7 16 0.516 0.61Change one year 3.3 4.8 14 0.13 4.3 8.2 16 0.15 �0.401 0.69Change two years 6.9 5.5 14 0.26 12.6 14.0 14 0.44 �1.289 0.22
Bayley II behaviorBase line 67.8 21.9 5 79.5 12.5 6 �1.113 0.30Change one year 4.8 9.7 4 0.22 10.8 9.5 6 0.86 �0.980 0.36Change two years 6.8 10.1 5 0.31 7.2 12.0 5 0.58 �0.057 0.96
Leiter behavior: social/cognitiveBase line 37.1 15.3 7 44.7 18.4 6 �0.744 0.47Change one year 3.4 5.0 7 0.22 11.0 5.9 6 0.60 �2.501 0.03*Change two years 1.5 14.3 6 0.10 14.5 6.0 6 0.79 �2.051 0.07
Leiter behavior: emotional regulationBase line 32.4 12.5 7 40.2 12.6 6 �1.109 0.29Change one year 2.9 3.0 7 0.23 7.7 4.7 6 0.61 �2.224 0.05*Change two years 4.2 8.7 6 0.34 11.2 7.4 6 0.89 �1.500 0.17
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palsy above six years of age is between 0.43 and 2.49[26]. Mean change in GMFM 66 scores in bothgroups is similar to the higher end of this, both afterone and two years (Table III). In the Queststandardization sample of children with cerebralpalsy, the average change of score in six months was5.13 (0.65 in the 1½–4 year, and 7.57 in the four toeight years). The present groups changed less thanone point in two years. The lack of progress mayindicate that the potential for fine motor
development was more limited in these groupsthan in the samples used for test standardization.It may also indicate that the best strategies forpromoting fine motor skills have not yet been found.The time used for training and other activities withactive motor involvement is often quite low inordinary intervention programs and there may belittle active motor training in the IAHP and FHCprograms for children with limited motor function.The results of intensive motor training with different
Figure 2. Individual scores in fine and gross motor scores, and in cognitive, expressive and receptive language, and global development atproject start and after 12 and 24 months in the IAHP/FHC group and the compariuson group.
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populations suggest that children might gain fromspending more time in active motor activities [21,44–46]. However, many of these studies includesubjects with acquired impairments and the resultsmay not be generalized to children with develop-mental disorders as it may be more difficult toinfluence the motor skills of children with suchdisorders.
Visual perception is also emphasized in the IAHPand FHC programs, but in this study visual assess-ment did not reveal much improvement and there
was no difference between the groups. Further, bothgroups showed modest gains in cognition andlanguage after one and two years, in line with whatmight be expected from their general level offunctioning at project start. Many of the differencesfavoured the comparison group but most did noteven approach significance. The results thus fail tosupport the claim that the intensive IAHP and FHCprograms should have a more positive influence onlanguage and cognition than community-basedprograms.
Figure 2. Continued.
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Table IV. Parents’ evaluations of intervention and the child’s development prior to IAHP and FHC, or before entering project, andduring the project period.
The comparison group showed somewhat betterbehavioral development, although the group differ-ences were only significant at one year. The differ-ences may reflect the fact that the IAHP and FHCprograms are very intensive and take most of thechild’s waking hours, and therefore limit the child’spossibilities for experiences that may promote self-regulation and self-initiated social interaction.
The significantly lower satisfaction among theparents who had chosen IAHP or FHC training thanin the comparison group probably indicates whythese parents chose an unconventional program. Itmight reflect a general attitude of dissatisfaction withtheir child’s progress and the ability of professionalsto provide an optimal program for their child.However, these parents showed considerably highersatisfaction with the intervention provided by IAHPand FHC than the comparison group did with theservices they received. This was not related toeconomy as both programs were publicly funded.It is notably that the parents in the IAHP/FHCgroup scored high on satisfaction even if theirchildren, in general, showed little progress in theassessments. This finding suggests that it is the waythe parents were met by the professionals at IAHPand FHC that was the basis for their positiveattitude. It is possible that the parents found theprofessionals in the community-based services focus-ing too much on the children’s limitations andgeneral thriving, and too little on the goals that thechildren might be able to achieve. This is in line withMacKay et al. [21] who found that most of theparents in their study expressed content with havingtried the IAHP program even if their child showedlittle or no progress. The parents felt that they had
done something meaningful for their child and givenhim or her a chance to improve.
Several parents in the present study changed fromIAHP to FHC during the project period. Otherstudies have found a similar pattern [22]. Onereason may be that the demands of FHC are slightlylower and that FHC allows some time in schoolduring training, but it may also be related to the factthat FHC have some courses in Denmark, and bothin Norway and Denmark this would mean lessstressful travelling than going to the USA.
Limitations
In the present study, there was no random allocationto the IAHP/FHC group and the comparison group.For ethical reasons it would have been impossible toallocate randomly if the parents should have thecentral role in the intervention that is prescribed byIAHP and FHC. On the other hand, it is a strengthof the project that the parents themselves had chosentheir child’s intervention and were loyal to theirchoice. The parents following the IAHP and FHChad chosen these programs because they believed inthem, and they also joined the project because theysupported a non-biased evaluation of the program.They believed that the program would show positiveresults for their child and were thus likely to be atleast as compliant with the program agenda as otherparents following the program. In fact, participationin the project was probably an important incentivefor the parents to follow the instructions of IAHPand FHC as well as they could. And importantly, itis not a reduced or adapted version of the programthat is evaluated, but the program as it is ordinarily
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implemented by parents choosing this program fortheir children.
The present samples are modest in size, althoughsimilar to Sparrow and Zigler [17] who had sampleswith 15 children. The study would have benefittedfrom a larger sample size and considerable effortswere made to recruit more families. The samples areheterogeneous but IAHP and FHC claim that theirprograms are effective with a wide range of patho-logical conditions. All families who gave their con-sent were included, with the exception of one childwith a progressive disorder which would have had anegative impact on the result in the IAHP/FHCgroup. Some parents in the IAHP/FHC groupwithdrew from the project, most before havingtaken part in any assessment, but there was nosubject selection in the project. Finally, the statisticalpower of the present sample size should be enoughto document effects of such a substantial size asthose claimed by IAHP and FHC.
Conclusions
A substantial number of parents continue to attendthe programs of IAHP and FHC in spite of criticismsfrom several professional organization. The reasonmay be the promises of spectacular results comparedto other treatments and a lack of studies investigatingthe actual use of the IAHP and FHC programs. Thepresent study found much poorer progress inthe IAHP/FHC group than the results reported onthe web sites of IAHP and FHC, and revealed smalldifferences between the IAHP/FHC group and thecomparison group following ordinary community-based intervention. The present results do not evenshow small trends favoring IAHP and FHC pro-grams, and thus contradict the claims of superioritycompared to other interventions made by IAHP andFHC. All interventions will aim for the best result forchildren with disabilities, their families and society,and the present results provide no justification forthe considerable time and human resources appliedor the children’s reduced participation in otheractivities. As might be expected, the parents whochoose the programs of IAHP and FHC weregenerally less satisfied with their ordinary commu-nity-based programs than the parents who stayedwith these services. They expressed much moresatisfaction with IAHP and FHC. This may reflectthe promises of great progress, but the parentsexpressed greater satisfaction even though theirchildren’s progress was more or less the same asbefore. One explanation may be that the parents feltthat they were doing something meaningful for theirchild with a disability. It seems as the staff at IAHPand FHC met the parents in a more positive manner
than the professionals in general services. Althoughthe IAHP and FHC programs did not lead to betterachievement, and thus cannot be recommended, theordinary services may still have something to learnfrom them about meeting and collaborating withparents.
Acknowledgments
We thank the children and their families for gener-ously giving us of their time, a commodity that isoften limited in the families with children who havesevere disabilities. We thank Peter Rosenbaum foruseful comments on an earlier draft of this article.
Declaration of interest: The authors report noconflict of interest. The authors alone are responsi-ble for the content and writing of this article.
The project has been funded by the NorwegianHealth Directorate and the Ministry of Social Affairsand Integration.
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