Families in Nepal - Deafblind International

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esearch briefingdistinct differences in the two groups, as decreasedability in these three functions is remarkably morefrequent in the rubella group. Our survey, whichcomprises all aetiologies present in our countryamong people with congenital deafblindness, showsthat reductions in memory and attention are latemanifestations significant to the diagnosis of CRS.A number of individuals in the non-rubella groupalso report increasing problems with concentration,thus the difference between the two groups is lesssignificant.Development of behaviour problemsIn our survey we asked for information on changesin behaviour in 11 different areas. They are: selfstimulation, motor agitation, self abusive behaviour,aggression, tolerance to changes in routine, levelsof confusion, restlessness, increased impulsivity,initiative, ability to start an activity, difficulties inchanging from one activity to another.In six of the areas there is a dominant score fromindividuals with CRS. Self-stimulating behaviour, motor agitation andincreased self-abusive behaviour are three typesof behaviour which primarily are identified in therubella group. This tendency seems to confirm thehypotheses of a late manifestation with respect toan increase in these types of behaviour. There is asignificant difference between the two groups.Increased aggression, less tolerance to changesin routines and increased levels of confusion arethree types of behaviour which have previouslybeen considered as late manifestations of CRS.These behaviours are relatively frequent inboth groups, however, with the difference thataggression and less tolerance to changes inroutines are much more significant in the rubellagroup, which could indicate a connection with theoriginal diagnosis.There is also the possible explanation thatthese three types of behaviour express generaldeprivation in the congenitally deafblindindividuals, or are related to early ageing processes.We know from gerontology that the behavioursmentioned may also be observed in the normalageing process.Increased restlessness and increased impulsivityare described as late manifestations of CRS inprevious foreign studies. Our study cannot confirmthis. According to our data increased restlessnessand increased impulsivity is reported in bothgroups, but not extensively.These behaviours are also known from gerontologystudies.Less initiative, a fall in ability to start activity, aswell as more difficulties in changing from oneactivity to another are also behaviours whichprevious studies have characterised as latemanifestations of CRS. However, none of thesetypes of behaviour seem to be characteristic ofany of the two groups in our study. Despite asmall minority of the rubella group showing thesebehaviours our data cannot confirm previousassumptions. As these behaviours are alsodescribed in gerontology, they may be indicators ofearly ageing processes.Among people who work with congenitally deafblindpeople it has often been discussed whether thesetypes of problem behaviour could be explained byenvironmental factors.We have therefore tried to identify possiblecommon features of each person and theirenvironment when the focused behaviours occur.None of them seems to depend on whether thesetting is deafblind specific or not. Nor can we statea correlation with the individual’s general level offunctioning or ability to communicate.Psychological state and psycho-sociallyconditioned factorsIn total the study investigated 11 types of behaviour:emotional withdrawal, increased separation anxietyat social withdrawal, frequent waves of sobs andincreased passivity, less energy, depression, emotionalinstability, lowered frustration threshold, sleepingdisorders, sleeps only a little and circadian problemsTwo of these are reported as low frequency for bothgroups. Five of the remaining nine are recorded withmoderate frequency in the behaviours scored, withmuch the same level in the two groups. Four variableshave scores in both groups, but are clearly higher forthe rubella group. Emotional withdrawal and increased separationanxiety are, according to the findings in our study,not a particular problem among congenitallydeafblind adults.Social withdrawal, more frequent waves of sobsand increased passivity, are behaviours that areseen in one in five congenitally deafblind persons,with nearly the same occurrence in both groups. Asthese behaviours also are known in gerontology,they may be tokens of early ageing.Less energy seems to be a problem to every thirdcongenitally deafblind person in both groups.We cannot find a clear explanation to this. Couldit be the lifelong deprivation caused by thedeafblindness? Is this a sign of early ageing? Couldthe explanation be something so simple as too littleexercise?The risk of developing a psychiatric disease isrelatively high in both groups. The only differencebetween the groups, which can be stated, is that the6 DbI Review
esearch briefingdisease is diagnosed at an earlier age in the nonrubellagroup. Depression is the most frequent diagnoses in bothgroups. Is this caused by a permanent state ofdeprivation or is it due to early ageing?Emotional instability occurs more frequently in therubella group than in the non-rubella group. Thesurvey reports it in every second individual withCRS and one in four of the deafblind persons withother aetiologies.The same is reflected in the findings related to alowered frustration threshold; again the problemis present in every second individual with CRSand in one in four in the non-rubella group. Is thisevidence of late manifestation in the rubella group?Or equally is it a symptom of early ageing?Sleeping disorders, sleeps only a little and circadianproblems reveal a significant difference betweenthe two groups. Every second individual in therubella group experiences considerable sleepingdisorders, whilst in the non-rubella group we speakof one in six. The absence of residual vision affectsthe individuals in the rubella group most. In thisgroup the data indicates a significant correlationbetween early infection during gestation and severesleeping disorders later in life.The individuals among whom we have rated all theseproblem behaviours constitute a representative sectionof the congenitally rubella group of the deafblindadult population in Denmark that lives in shelteredhomes.Viewed from the level of functioning, the groupstudied is also highly representative, apart from thoseindividuals who manifested sleeping disorders. Theyare basically persons who, to a certain extent, areable to communicate in a linguistic way with theirenvironments.Concluding commentsThe changes in behaviour observed in the rubellagroup that are significantly different from thenon-rubella group might indicate rubella-specificlate manifestation of the syndrome. Changes ofneurological or physiological character take place insome of the organs of these individuals, which resultin the onset of problems at somatic, behavioural andpsychosocial levels in adulthood. Some indicationsmay point to earlier ageing in the rubella group thanin other people.When facing changes in behaviour we mustquestion whether internal factors, external factors, ora combination of both, are the trigger of the changesobserved. At first it must be clarified whether thecause could be an unknown somatic condition, aneurological condition or decrease in hearing and/or vision. Attention must be paid to the suddenor gradual character of the changes observed. Aneurological and psychological assessment is alsoimportant, and the individuals’ interaction with theirenvironments must be observed and analysed as a partof the total evaluation of the person’s situation.We recommend annual health checks for all personswith congenital rubella syndrome. In Appendix 2 ofthe full report there is a guiding checklist, which maybe presented to the physician examining the personwith CRS. Also, we again stress the importance ofregular appointments for examinations of hearing andvision. In general, there is a need for far more attentionto be paid to the risk of deterioration in the two maindistance senses for the deafblind population as awhole.If we look at how quickly changes take place inthe two groups studied with respect to the variablesscored, it appears that within the two-year period ofour survey the positives occur almost exclusively inthe rubella group (reported in Appendix 3 of the fullreport). If this is a valid tendency we can estimatethat within five years the differences between the twogroups compared will be even more important.Future workThe Information Centre on Congenital Deafblindnessrecommends that this survey should be followedup by a quantitative study of the same group ofindividuals starting no later than 2006. Until then,qualitatively oriented interviews may contribute to thedevelopment of the existing knowledge in identifyinguseful details from selected participants. Experiencebaseddevelopment is still needed in this veryimportant area and there is evidence to suggest thatthere is a clear advantage when this work is combinedwith medical research. Systematic information of thiskind would be highly valuable to the clinical work inour field and considerably contribute to an increasedquality of life for the individual with congenitaldeafblindness.Translated by Elin OstliBirthe LaustrupNational Information Centre on CongenitalDeafblindlaustrup@vcdbf.nja.dkJanuary – June 2004 7
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