Self-injurious behaviour before and after deinstitutionalization

121

Abstract

The deinstitutionalization movement is presentlyspreading in Europe. Studies evaluating the effectsof deinstitutionalization on behaviour disturbancesamong people with intellectual disability (ID) havebeen inconclusive. The present paper focuses onpeople without self-injurious behaviour (SIB) whodeveloped SIB after deinstitutionalization. Thepresent authors studied individual and environmen-tal characteristics before and after deinstitutionali-zation to look for factors associated with thedevelopment of SIB which could also be possibleintervention points for preventive action. All thoseindividuals in an institution for people with ID whodid not have SIB before deinstitutionalization wereincluded in the present study. The individuals whodeveloped SIB after deinstitutionalization (n = )formed the study group (group A) and those whodid not (n = ) comprised the control group(group B). The population was examined bothbefore and after deinstitutionalization. As far aspossible, the same methods were used at both occasions. The covariates were both individual (e.g.mental health, behaviour disturbances and behav-iour deficits) and environmental (e.g. caretaker edu-

cation, caretaker:patient ratio, housing and leisureactivities). Psychiatric disorders were identified in and with the Psychopathology Instru-ment for Mentally Retarded Adults, which wasfilled in by the caretakers. In , the people ingroup A who acquired SIB had lower developmen-tal quotients, used wheelchairs more often and hadtrouble with moving around without help. They alsohad a greater frequency of epileptic seizures, andhearing and communication impairment. In ,there were only minor environmental differencesbetween groups A and B. There were significantlymore individuals involved in the rotation period andmore unskilled caretakers working with the peoplein group A than group B. The present authorsfound no differences between the two groups onvariables such as global mental health and behav-iour disturbances, or in the use of neurolepticsbefore or after deinstitutionalization. Groups A andB did not show differences in behaviour distur-bances or psychiatric disorders in . In both and , there were no differences betweengroups A and B on variables such as accommoda-tion, caretaker:patient ratio, the number of care-takers involved in direct care, the caretakers’education, or the time spent in structured activitiesbefore and after deinstitutionalization. The individ-ual characteristics indicating that a person mayacquire SIB are behaviour deficits which are sug-gestive of central nervous system dysfunction or

Journal of Intellectual Disability Research

pp –

© Blackwell Science Ltd

Self-injurious behaviour before and after deinstitutionalization

J.A. Nøttestad & O. M. Linaker

Department of Psychiatry and Behavioural Medicine, Norwegian University of Science and Technology,Trondheim, Norway

Correspondence: Jim Aa. Nøttestad, Norwegian University of

Science and Technology, Section for Forensic Psychiatry, Brøset,

PO Box Lade, N – Trondheim, Norway (e-mail:

[email protected]).

damage, even if the results are inconclusive. Thedevelopment of SIB may also be facilitated by com-munication deficits or by reinforcement of a inci-dentally occurring SIB if the staff includes manyunskilled caretakers in the rotation period.

Keywords deinstitutionalization, self-injuriousbehaviour

Introduction

The deinstitutionalization and relocation of peoplewith intellectual disability (ID) started early in thes and mainly took place in the USA. Thenumber of individuals residing in large institutionsin the USA has been reduced by more than %since (Lakin et al. ; Mangan et al. ).In England and Wales, the number of people livingin institutions for individuals with ID was reducedfrom to between and

(Raynes et al. ; Thompson ; Emerson &Hatton ). In Sweden, the number of peoplewith ID living in institutions has been reduced from in to in (Tøssebro ).The Norwegian deinstitutionalization differs frommany analogue projects in being both total andnation-wide. All administrative responsibility forservices was decentralized from county authoritiesto local councils, and every institution for peoplewith ID was closed by . In the mid-s,before deinstitutionalization, about peoplewith ID lived in institutions (Norway has a popula-tion of . million).

The institutionalization rates per citizensbetween – and – show that Scan-dinavia and the UK have lower rates of institution-alization (average = . per population), thanother European countries (average = . per

population). The figure for the USA is . per population (Hatton et al. ). The deinstitu-tionalization movement is presently spreading inWestern Europe and thousands of people with IDwill be relocated in the future. Studies evaluatingthe effects of deinstitutionalization on behaviourdisturbances among people with ID are inconclu-sive. Some studies show an increase, some adecrease and some show no change in such behav-iours after deinstitutionalization (Larson & Lakin). The present authors have found no study

identifying risk factors for developing behaviour dis-turbances after deinstitutionalization.

Early studies in the USA on deinstitutionalizationand community relocation used the subject’s abilityto remain in the community as the measure ofsuccess and evaluated the factors associated withthis capacity (Heal et al. ; Craig & McCarver). The most consistent findings were that mal-adaptive behaviour was frequently associated withunsuccessful community relocation (Sutter et al.; Hemming ). The most consistentlyreported finding is that clients’ behaviour distur-bances, primarily antisocial aggressive tendencies,often lead to reinstitutionalization (Landesmann-Dwyer ). The effects of sex, age and abilitiesare conflicting and inconclusive (Heal et al. ;Sutter et al. ; Hemming ; Craig &McCarver ; Shah & Holmes ).

The focus of the present paper is on individualswithout self-injurious behaviour (SIB) before dein-stitutionalization who developed SIB after deinstitu-tionalization. The present authors wanted to studyindividual characteristics, and changes in resourcesand environment during deinstitutionalization tosee if any of these factors were associated with SIBdevelopment, since such factors could be possibleintervention points for preventive action.

Subjects and methods

All residents of an institution for people with IDwho were without SIB before deinstitutionalizationwere included in the present study. The individualswho developed SIB after deinstitutionalizationformed the study group (group A) and those whodid not comprised the control group (group B).The covariates were individual characteristics (e.g.mental health, behaviour disturbances and behav-iour deficits) and environmental characteristics (e.g.caretakers’ education, caretaker:patient ratio,housing and leisure activities).

Population

The base population in the present study consistedof all residents of Hallsetheimen Central Institutionfor people with ID living in Sør-Trøndelag Countywho were between and years of age in ,


J. Aa. Nøttestad & O. M. Linaker • Deinstitutionalization and self-injury122

© Blackwell Science Ltd, Journal of Intellectual Disability Research , –

the year in which they were first examined. Out ofthese people, were dead and one was livingin another county in . The remaining indi-viduals were included in the follow-up study afterdeinstitutionalization in .

Before deinstitutionalization, subjects (%)had showed SIB. After deinstitutionalization in, (%) had SIB. The increase was not sig-nificant. Six people (%) had stopped showing SIB.Fifteen subjects (%) without SIB in haddeveloped SIB by (group A), and half thepopulation, i.e. individuals (%), showed noSIB in either or (group B).

The population included in the present study(i.e. groups A and B) originally came from dif-ferent local communities, ranging from urban tosparsely populated rural areas. The male:femaleratio was nearly :. In , the mean age of thesubjects was . years (range = – years) and% of the population were more than yearsold.

In , % of the subjects were classified ashaving mild ID, % had moderate ID, % hadsevere ID and % had a diagnosis of profound ID according to the ICD- classification (WHO). Nine per cent of subjects could not be clas-sified as a result of multiple handicaps, but theirlevel of adaptive behaviour was comparable to thelevel of those with profound ID. In the analysisbelow, these latter subjects are included with thosewho had profound ID.

Setting

All subjects in the present study had been dis-charged from the institution. Two-thirds of thepopulation under study (%) had moved back totheir local communities, and the other third (%)had moved into houses and apartments in refur-bished wards on the grounds of the former institu-tion. In , % of subjects lived alone, and %shared one or more rooms with other people withID, but % had their own bedroom. All subjectshad their health needs catered for by the local com-munity’s general health service systems and allreceived services from community agencies.

The caretaker:patient ratio was high: % had aratio < ; % a ratio between and ; and %had a ratio > . The present authors lacked infor-

mation about staffing for % of the population. Thelevel of professional qualification for caretakers waslow. Only % were educated nurses or specialnurses for people with developmental disabilities,% had a one-year nurse’s assistant education,and % were unskilled. One-fifth (%) of thepopulation received care from caretaker groupswithout any members with a relevant college education.

Data collection

The current population was first examined in

(Linaker b). As far as possible, the presentauthors used the same methods in the follow-upexamination in . Information about the studypopulation’s present situation and condition wereprovided by caretakers with a minimum of months of almost daily contact with the subjects(median = years, range = .– years).

The present study was approved by the DataInspectorate (the bureau for the supervision of theNorwegian data protection act), the regional ethicalcommittee for medical research and the NorwegianBoard of Health.

Instruments

Psychiatric disorders were identified in and with the Psycopathology Instrument for Mentally Retarded Adults (PIMRA; Senatore et al.). The PIMRA consists of items over eightsubscales: () schizophrenia; () affective disorder;() psychosexual disorder; () adjustment disorder;() anxiety disorder; () somatoform disorder; ()personality disorder; and () mental adjustment.Senatore et al. () found the internal consistencyequivalent to a coefficient a of .. Test–retest correlations were significant for all subscales, andvaried between r = . and r = . when retestedafter approximately weeks. In the study, thesingle-item inter-rater reliability corresponded tof = . (% agreement) (Linaker b). Onlyschizophrenia, affective disorder, anxiety disorder,adjustment disorder and no axis I diagnosis wereconsidered mutually exclusive diagnoses. Somato-form, psychosexual and personality disorders wereconsidered compatible with existing axis I diagno-sis, except for schizophrenia.




The caretakers answered questions about theoccurrence of five behaviour disturbances duringthe previous year. These questions were asked inboth and , and were used to study behav-iour changes after deinstitutionalization.

Skills such as dressing and undressing, the abilityto eat alone, personal hygiene, the ability to move,the use of wheelchair, and the ability to find one’sway when travelling were scored on a five-pointscale: () full independence without need for help;and () total dependence on caretakers. The needfor support and supervision caused by behaviourdisturbances and mental health problems was alsoscored on a similar five-point scale.

Nineteen subjects from the present study popula-tion were scored by two independent raters. Theone-year frequencies of behaviour disturbances hada high inter-rater reliability with a f varyingbetween . and .. On the PIMRA, the meansingle-item inter-rater reliability corresponded tof = .. The number of positive diagnoses in eachcategory was too small to compute inter-rater reli-ability for each diagnostic category.

Information on medical conditions was extractedfrom the participants’ medical records and catego-rized according to the main chapters of the ICD-

(WHO ).Drugs were categorized according to the

anatomical chemical classification (ATC Index;WHO ) and the dosages were transformed to apercentage of the defined daily dosage (DDD) forcomparisons within main classes of drugs.

Results

Individual characteristics before deinstitutionalization

The degree of ID was significantly higher for thegroup which developed SIB (Mann–Whitney U-test, P = .). There were no significant differ-ences between groups A and B in the distributionof gender or in mean age (. and . years forgroups A and B, respectively).

Medical conditions

Table shows the frequencies of various aetiologies of ID in the two groups. There were nosignificant differences between the two groups inthe frequency of any aetiology of ID nor in theprevalence of autism in the two groups. There wereno significant group differences in the prevalencesof medical diseases according to the main ICD-

groups.The frequency of people with epileptic seizures

in was significantly higher in group A (%)than in group B (%) [c2 (, n = ) = .,P = .].

Behaviour deficits

Table shows the degree of behaviour deficits ingroups A and B before deinstitutionalization. Therewere significantly higher proportions of people withbehaviour deficits, such as inability to move around,




Table 1 Aetiologies of intellectual disability among those subjects who developed self-injurious behaviour (SIB) after deinstitutionalization

(group A) and among those without SIB (group B) (c2 test): (NS) not significant

Group A (n = 15) Group B (n = 53)

Aetiology Number Percentage Number Percentage P-value

Unknown 7 47 22 42 NSDown’s syndrome and other chromosomal aberrations 3 20 12 23 NSPeri- and neonatal complications 2 13 8 15 NSMeningoencephalitis 0 0 5 9 NSInfantile autism 2 13 0 0 NSDegenerative central nervous system disorder 0 0 4 8 NSOther disorders 0 0 3 6 NS

use of wheelchair, difficulties with communication,difficulties with personal hygiene and hearingimpairments, in group A. The present authorsfound no significant differences between the twogroups in ability to dress and ability to eat before orafter deinstitutionalization.

Behaviour disturbances

Table shows the frequencies of behaviour distur-bances other than SIB in groups A and B in .There were no significant differences between thetwo groups prior to deinstitutionalization.

The caretakers’ evaluation of their clients need for help caused by behaviour disturbances and mental health problems in were not significantly different in groups A and B

(mean ± SD = . ± . and . ± .,respectively).

Psychiatric disorders

Table shows the frequencies of psychiatric dis-orders in in the two groups. There were nosignificant differences between groups A and B.

The prominence of psychiatric disorders in thepopulation was reflected by the consumption ofneuroleptic drugs. In , % and % of thesubjects used neuroleptics in groups A and B,respectively. In , the figures were similar, i.e.% and %. The group differences were not significant. The average DDD for neuroleptics wasnot significantly different in the two groups in

or .




Table 2 Scores on behaviour deficits in among those subjects who developed self-injurious behaviour (SIB) after deinstitutionalization

(group A) and among those without SIB (group B) (Mann–Whitney U-test): () fully independent; () totally dependent on others; and (NS)

not significant


Behaviour deficit Mean SD Mean SD P-value

Ability to move 3.1 2.3 1.7 1.2 0.006Use of wheelchair 3.1 2.4 2.0 1.8 0.027Loss of hearing 2.0 2.4 1.2 0.9 0.049Ability to communicate 3.6 1.6 2.6 1.6 0.044Personal hygiene 4.0 1.1 3.2 1.3 0.044Loss of sight 2.1 1.6 1.6 1.0 NSAbility to orient/travel 4.0 1.1 3.2 1.2 NSAbility to dress 3.7 1.3 3.1 1.4 NSAbility to feed oneself 3.4 1.2 2.8 1.2 NS

Table 3 Frequencies of behaviour disturbances in among those subjects who developed self-injurious behaviour (SIB) after deinstitu-

tionalization (group A) and among those without SIB (group B) (c2 test,Yate’s correction, percentage of whole group): (NS) not significant


Behaviour disturbance Number Percentage Number Percentage P-value

Attacks upon people 4 27 13 24 NSAttacks upon objects 2 13 16 30 NSOther disruptive behaviour 6 40 21 40 NSPassivity 1 7 10 19 NSNo problems 7 47 21 40 NS

Environmental characteristics before and afterdeinstitutionalization

Housing

In , all subjects lived in institution wards withbetween three and inhabitants. Some had theirown bedroom, but all shared living rooms withother people with ID. The present authors found nosignificant differences in the ward conditions forgroups A and B. In , there was no significantdifference between the fraction of individuals ingroups A and B who lived in their own apartmentor not. Neither could the present authors find anydifference in the number of times that they hadbeen moved from one dwelling to another afterdeinstitutionalization.

Activities

The amount of time spent in structured activitiesdid not differ between group A and B in or.

Caretaker characteristics

There were no significant differences incaretaker:patient ratio between groups A and B in (mean ± SD = . ± . and . ± ., respec-tively) or in (mean ± SD = . ± . and. ± ., respectively).

In , the mean number of caretakers involvedin the direct care in group A was . (SD = .)while the mean in Group B was . (SD = .);the difference was not significant. In , the sub-

jects in group A had a mean of . caretakersinvolved in direct care (SD = .) and the those ingroup B had a mean of . (SD = .). The groupdifference was significant [t () = ., P = .].

In , there were no significant differences inthe caretakers’ education between groups A and B.In , group A had a significantly higher numberof unskilled caretakers than group B [t () = .,P = .], but not of staff educated as nurses orwith a one-year nurse’s assistant education.

Discussion

The present study shows differences in individualcharacteristics among those who acquired SIB afterdeinstitutionalization and those who did not. In, the subjects developing SIB had a lowerdevelopmental quotient, used wheelchairs moreoften and needed more assistance during ambula-tion. They had more epileptic seizures, and moreimpaired communication and personal hygiene. Onthe other hand, the present study does not showany differences in individual characteristics betweenthe two groups in or on variables such as mental health, behaviour disturbances, use ofneuroleptics, the ability to dress and the ability to eat.

The second observation in showed onlyminor environmental differences between the indi-viduals in groups A and B. There were significantlymore people involved in direct care and moreunskilled caretakers working with the people ingroup A than in group B. There were no differences




Table 4 Psychiatric disorders in among those subjects who developed self-injurious behaviour (SIB) after deinstitutionalization (group

A) and among those without SIB (group B) (c2 test,Yate’s correction, percentage of whole group): (NS) not significant


Psychiatric disorder Number Percentage Number Percentage P-value

Schizophrenic disorder 2 13 11 20 NSAffective disorder 0 0 0 0 NSAnxiety disorder 9 60 32 60 NSSomatoform disorder 1 7 7 13 NSPsychosexual disorder 2 13 8 15 NSPersonality disorder 11 73 41 77 NS

in other environmental factors such as subjectsliving alone in an apartment or in the number oftimes which they had been moved after deinstitu-tionalization. There were no differences in the care-taker:patient ratio, in the number of caretakers witha - or one-year education, nor in the time spent instructured activities.

The population under study had stayed in aninstitution for many years. It consisted of few sub-jects and is not representative of people with ID ingeneral, but it covers the institutionalized membersof this population well since few people resided ininstitutions outside the county.

Eight years elapsed between the first and the lastdata collection in the present study. Time is one of several problems in evaluation studies (Jensen). During these years, innumerable thingsmust have happened in these persons’ lives. Deinsti-tutionalization is only one event. However, thepresent authors are not aware of any other majorevent common to the group except that they hadbecome years older. Several studies have shownthat about two-thirds of those showing aggressiveand challenging behaviour are below the age of years. After the age of years, there is adecrease in aggression and challenging behaviour(Quereshi ; Linaker a). Thus, the presentaverage age of years should indicate an expecteddecrease in behaviour problems and so age seemsan unlikely explanation.

In an epidemiological study using a logisticregression analysis, Collacott et al. () foundthat retained age, developmental quotient, hearingstatus, immobility and number of autistic symptomswere explanatory variables for SIB. The results ofthe present study are nearly the same except for ageand autistic symptoms.

The nature of medical conditions which cause IDand medical health problems can serve as potentialcontributors to the initial onset, subsequent instiga-tion and persistent reoccurrence of SIB (Gardner &Sovner ). The present study could not showany relationship between the development of SIBand the aetiology of ID in the two groups. Neithercould the authors find any differences in the preva-lence of primary medical disorders in the twogroups.

Many studies have observed a clustering of SIBand aggressive behaviour (Bihm & Poindexter ;

Read ), but it is uncertain if these behavioursare aetiologically related (Rojahn ). Interper-sonal aggression did not increase the risk of SIBdevelopment in the present study. The authors arenot aware of any empirical research that hasfocused primarily on the relationship between SIBand psychiatric illness. In a study of people,Fraser et al. () mentioned that behaviour dis-turbances seem not to be expressions of psychiatricdisorders, and that psychiatric illness and behaviourdisorders are not interchangeable terms. In a report of almost subjects with dual diagnosisand a matched control group, Nihira et al. ()suggested that there was a positive relationshipbetween SIB development and pre-existing psychiatric diagnosis. How SIB and psychiatricillness might be related was not further studied.The present study could not show any relationshipbetween SIB development and pre-existing psychiatric diagnosis.

Those who moved from one dwelling to anothersuffered disruptions in both their physical and psychological environment. The loss of well-knowncaretakers and institutional milieu could havecaused depression and contributed to the increasein SIB. However, this hypothesis was not supportedby the PIMRA results. Two people acquired anaffective disorder after deinstitutionalization andonly one of these was among those who acquiredSIB. Those who acquired SIB had not moved moreoften than the others.

The authors’ interpretation of the present resultsis that it seems likely that those who acquired SIB had more central nervous system (CNS) disturbances. They had a higher proportion ofbehaviour deficits which indicate CNS malfunction,impaired ambulation, more frequent epilepticseizures and more impairments in communication,and their developmental quotient was significantlylower.

In a review, Baumeister et al. () identifiedthree major neurochemical hypotheses about thepossible biological risk factors of SIB: () a CNSdeficiency in the nigrostratial dopamine system; ()a malfunction of the opioid system; and () a CNSdysfunction in the serotonergic system. These possibilities are not necessarily in competition, andmay be interconnected or complementary systemswhose malfunction leads to an imbalance in brain




transmitters related to the development of SIB(Nyhan et al. ). At the time of writing, mostauthors agree that one risk factor for SIB mayrelate to the disturbance of neurotransmitters in thebrain (Schroeder et al. ; Clarke ).

Deinstitutionalization necessarily involves changesof dwellings, physical surroundings, caretakers andother factors. An individual may begin self-injuringbecause of some organic predisposing factors, butshe to he may continue for other reasons such asthe above changes and other factors (Carr &McDowell ). Continuation of the behaviourmay often be established by dysfunctional reinforce-ment from caretakers (Iwata et al. ; Lovaas &Smith ; Schroeder & Tessel ) and this cir-cumstance is more likely to occur with unskilledworkers. Malfunction of the CNS may impair anindividual’s capacity to establish competing func-tional behaviours (Durand & Crimmins ;Durand ). For an individual with ID whocannot speak, SIB may become a very effective,although maladaptive, manner of ‘getting her or hisown way’. It can almost obviate the need for speechsince the person will quickly learn that the care-takers will rapidly provide whatever she or he wantsas soon as she or he injures her or himself, (Carr &Durand ; Durand ). The results of thepresent study are compatible with such a chain ofevents. After deinstitutionalization, those whoacquired SIB received their services from a highernumber of caretakers than those without SIB, andamong their caretakers, the present authors found ahigher proportion of unskilled caretakers thanamong those who did not acquire SIB. The numberof individuals involved in direct care and the pro-portion of unskilled caretakers will increase theprobability of a reinforcement of SIB independentlyof the reasons for the first occurrence of the behaviour.

The complexity of the interaction betweenorganic conditions and environmentally mediatedlearning should not be underestimated. The presentresults are tentative in nature because of the rela-tively small numbers studied, but the findings indi-cate that people with CNS disease and withoutlanguage are at risk of acquiring SIB after deinstitu-tionalization, and that this risk may increase ifmany individuals are involved in direct care and ahigh proportion of these workers are unskilled.

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Self-injurious behaviour before and after deinstitutionalization