Quality of Life in Persons with Intellectual Disabilities and Mental Health Problems: An Explorative...

8/10/2019 Quality of Life in Persons with Intellectual Disabilities and Mental Health Problems: An Explorative Study

1/9

Hindawi Publishing CorporationTe Scientic World JournalVolume , Article ID ,pageshttp://dx.doi.org/.//

Research ArticleQuality of Life in Persons with Intellectual Disabilities andMental Health Problems: An Explorative Study

Filip Morisse,1 Eleonore Vandemaele,2 Claudia Claes,3 Lien Claes,4 and Stijn Vandevelde3,4

Psychiatric Centre Dr. Guislain, Sint-Juliaanstraat , Ghent, Belgium Den Dries Service Center, Kramershoek , Evergem, Belgium Faculty o Education, Health and Social Work, University College Ghent, Voskenslaan , Ghent, Belgium Department o Orthopedagogics, Ghent University, Henri Dunantlaan , Gent, Belgium

Correspondence should be addressed to Filip Morisse; [email protected]

Received October ; Accepted January

Academic Editors: H. P. Kapfammer, . Steinert, and A. M. Valenca

Copyright Filip Morisse et al. Tis is an open access article distributed under the Creative Commons Attribution License,which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Te eld o intellectual disability (ID) is strongly inuenced by the Quality o Lie paradigm (QOL). We aimed at investigatingwhether or not the QOL paradigm also applies to clients with ID and cooccurring mental health problems. Tis paper aims atstimulating a debate on this topic, by investigating whether or not QOL domains are universal. Focus groups with natural andproessional network members were organized to gather qualitative data, in order to answer two questions: () Are the QOLdimensions conceptualized in the model o Schalock et al. applicable or persons with ID and mental health problems? () Whatare indicators relating to the above-mentioned dimensions in relation to persons with ID and mental health problems? Te resultsoffer some proo or theassumptionthat theQOL constructseemsto have universal properties.Withregard to thesecond question,the study revealed that the natural and proessional network members are challenged to look or the most appropriate supportstrategies, taking specic indicators o QOL into account. When aspects o empowerment and regulation are used in an integratedmanner, the application o the QOL paradigm could lead to positive outcomes concerning sel-determination, interdependence,social inclusion, and emotional development.

1. Introduction

Te eld o intellectual disability (ID) is strongly inuencedby the Quality o Lie paradigm (QOL), rom a research,a practice-based, and a policy-oriented perspective [].

Tis QOL ramework supports the equality o persons,which is reected in concepts such as sel-determination,emancipation, inclusion, and empowerment. In daily practicehowever, in which concepts are translated into tangibleactions, proessionals are oen conronted with difficultiesto apply these QOL principles. Tis seems especially truewhen working with specic populations, including personswith ID and mental health problems. Te application oQOL principles, which shouldin ideal conditionsleadto positive outcomes with regard to social participation,independence, and well-being [], seems to be at risk, asaccounts rom proessionals indicate that empowerment issometimes replaced by actions solely aimed at controlling,

dominating and excluding clients with ID and cooccurringmental health problems.

Tis paper aims at stimulating a debate on this topic, byinvestigating whether or not QOL domains are universal andapplicable to people with ID and mental health problems.Although the cooccurrence o mental health problems canbe described as an important issue in the eld o ID researchand practice, there have not been many studies tackling theapplication o the QOL paradigm in this specic population.

.. Quality o Lie (QOL). Te construct o QOL has beenwidely applied in the eld o ID and implies principles oemancipation and inclusion. Initially, the assessment o QOLwas approached rom multiple perspectives, resulting in over, measures reported in the QOL literature by the mid-s []. Te current approach to the measurement o QOLcan be characterized by the ollowing:
http://-/?-http://dx.doi.org/10.1155/2013/491918http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://dx.doi.org/10.1155/2013/491918http://-/?-


2/9

Te Scientic World Journal

(a) its multidimensional nature involving core domainsand indicators;

(b) the use o methodological pluralism that includes theuse o subjective and objective measures;

(c) the incorporation o a systems perspective that cap-tures the multiple environments impacting people atthe micro-, meso-, and macrosystems levels; and

(d) the increased involvement o persons with ID in thedesign and implementation processes [,].

In this study, we adopt the ollowing denition oindividual-reerenced QOL[]:

Individual QOL is a multi-dimensional phe-nomenon composed o core domains that areinuenced by personal characteristics and envi-ronmental variables. Tese core domains are thesame or all people, although they may vary inrelative value and importance. QOL domains

are assessed on the basis o culturally sensitiveindicators.

Te QOL construct consists o the eight domains that havebeen validated in a series o cross-cultural studies [, ]. Tese eight domains are personal development and sel-determination (that reect a persons level o independence);interpersonal relations, social inclusion, rights (that reecta persons social participation); emotional, physical, andmaterial well-being. Te QOL literature does not dene ahierarchy amongst those domains nor does it speciy causeand effect relations amongst them []. QOL indicators areQOL-related perceptions, behaviours and conditions thatoperationally dene each QOL domain.

.. Persons with ID andMental Health Problems: erminology,Prevalence, and Support Needs. Te prevalence o psychiatricdisorders in people with ID is higher as compared to thegeneral population[]. Epidemiological studies estimate theprevalence o behaviour problems and psychiatric disordersamongst individuals with ID at % []. Te coexistenceand intererence o the symptoms o both ID and mentalhealth problems are multiple and complex. Tis is, orinstance, reected in the lack o an internationally recognizedanduniorm denitionand terminology []. Troughout theliterature, concepts including dual diagnosis, cooccurringdisorders, mental health problems, mental health needs,

behavioural problems, behavioural disorders, conductdisorders, and challenging behaviour are used. In thispaper, it was chosen to use the term mental health problemsin persons with ID. By doing so, we include both behaviouralproblems or challenging behaviour [] as well as psychi-atric disorders as dened in currently used manuals, such asthe DSM-IV or the ICD-.

Persons with ID and mental health problems might beamongst the most vulnerable groups o people in our society[]. Up until now, the medical ramework has been verydominant in supporting persons with ID and mental healthproblems. According to some authors, this is due to thecomplexity o physical, emotional, and behavioural issues

[,]. Under impetus o this tendency, traditional mentalhealth services have ocused on establishing special health-care units. Despite the deinstitutionalization movement,community-based services or people with ID and mentalhealth problems are still scarce[]. Tis observation couldexplain why it is more difficult to make the QOL paradigm

operational or this population and its care system thanor support systems in which concepts as inclusion andparticipation are more obvious.

.. Quality o Lie in Persons with ID and Mental HealthProblems. Despite a high number o studies on QOL inpeople with an ID, ew empirical studies specically tackledQOL o people with ID and mental health problems. Yet, thecoexistence o ID and mental health problems can have ar-reaching effects on the persons daily unctioning and QOL.In this respect, adequate support is a challenge, as Dosen andDay[] argue or an integration o medical, psychotherapeu-tic, behavioural, cognitive, milieu, and pedagogical treatment

methods to enhance QOL. Because o this complexity, theapplication o the QOL paradigm is notsel-evident, althoughthere seems to be consensus about the act that the samedomains are relevant or all persons, including this specicsubpopulation. As very ew studies exist on QOL or peoplewith an ID and mental health problems, we aimed to explorehow the eight-domain QOL construct by Schalock et al. []can be operationalized or persons with ID and mental healthproblems. Tis leads to the ollowing research questions:

() Are theQOL dimensions conceptualized in the modelo Schalock et al. [] applicable or persons with IDand mental health problems?

() What are indicators relating to the above-mentioned

dimensions in relation to persons with ID and mentalhealth problems?

2. Method

.. Participants. Te study [] took place in Flanders, theDutch-speaking Northern part o Belgium. A partnershipamongst three organizations in the support system or peoplewith ID and mental health problems was developed. TeFlemish support systems consist o two distinct care systems,which evolved separately: mental health care on the onehand and the care and support system or people with ID onthe other hand. Historically, people with ID were supported

within mental health care settings (starting rom the idea thatintellectual disability was a mental health problem), butrom the s onwards, a separate support system or peoplewith disabilities has emerged. Tis shi, however, resultedin people with ID and mental health problems requentlyalling between the gaps []. While mental health carestated that people with disabilities have to be supportedwithin the care system o people with disabilities, this lattercare system claimed that the treatment o people with mentalhealth problems is the responsibility o mental health care[]. Nowadays, proessionals in both systems attempt tocollaborate withincontinuums o care, although both systemsstill exist in their own right. Tis study tried to involve
http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-


3/9


: Number o statements organized within the eight domains o QOL by Schalock et al.[] or proessional and natural networkmembers [].

Domain Proessional workers (PW) Network members (NM) otal Percentage o PW Percentage o NM

Emotional well-being ,% ,%

Interpersonal relationships ,% ,%

Sel-determination ,% ,%

Social inclusion ,% ,%

Material well-being ,% ,%

Personal development ,% ,%

Rights ,% ,%

Physical well-being % %

caregivers o both care/support systems. On the one hand,two observation and treatment units or people with IDwithin mental health care participated in the study. On theother hand, a unit or people with ID and mental healthproblems within a service center or people with ID was

involved.In these services, participants were selected by purposeulsampling [] and were contacted by the employees othese organizations. Te sample consisted o persons romthe natural network ( = 7) and representatives o theproessional network (staff members) ( = 10) o people withID and mental health problems. o achieve a heterogeneoussample o participants, a number o parameters were takeninto account: gender, age, place o residence o the client(mental health care or support system or people with ID),type o mental health problems, and level o ID.

.. Instruments. Focus groups were organized to gather

qualitative data. Te rst ocus group consisted o ourmothers, two athers, and one stepmother, who were allclosely involved with their amily members with ID. Tesecond ocus group consisted o proessionals who wereemployed in the three acilities represented in this research:three staff members o both the psychiatric centers and ouro the unit or people with ID and mental health problemswithin a service centre or people with ID.

Te selection o the proessional workers/staff was basedon age, gender, years o experience (rom up to years oexperience), and their level o education. Te staff memberso the psychiatric centers were psychiatric nurses or educa-tional specialists. Tese o the service centre or people with

ID were educational specialists and one social worker.

.. Procedure. As a rst step, the purpose o the research wasexplained to the participants, who were also asked to signan inormed consent orm. Te ocus group discussions tookabout minutes and were led by the second author o thispaper, who was assisted by the ourth and h authors othis paper. Each ocus group was organized twice. In the rstocus group participants were asked to brainstorm and reecton how they consider Quality o Lie in general and ortheir amily member/client in particular: which things areimportantto be able to talk about a quality lie or people withID and mental health problems and or your amily member

in particular? In the second ocus group, the data rom therst ocus group were grouped into the eight domains o theQOL construct as developed by Schalock et al. [] and wereconceptualized in indicators, which turn out to be importantor the research population.

.. Analysis. Te our ocus groups were audio- andvideo-taped and were literally transcribed. wo o theauthors independently read these transcripts and identieddomains/categories and indicators/themes, which guaran-teed the interrater reliability. Structuring and clusteringthe results were primarily based on the QOL construct oSchalock et al. []. Statements obtained in the rst ocusgroupswere classied in those eight domains (personal devel-opment, sel-determination, interpersonal relations, socialinclusion, rights, emotional well-being, physical well-being,and material well-being). In the second ocus groups, theparticipants were asked to operationalize the indicators cor-

responding with the eight domains.

3. Results

Te rst research question investigates whether the QOLdimensions, which are conceptualized in the model oSchalock et al. [], are applicable or persons with ID andmental health problems. Te results show that the partici-pants mentioned aspects o all eight domains (personal devel-opment, sel-determination, interpersonal relations, socialinclusion, rights, emotional well-being, physical well-being,andmaterial well-being) as a response to the general questiono the rst ocus groups. able reports how requently

proessional and natural network members talked aboutaspects rom the eight domains. Tis reects which domainsreceived more or less attention.

Te domains o emotional well-being, interpersonalrelations, sel-determination, and social inclusion werementioned most oen. Sel-determination and interper-sonal relations were more requently cited by proessionals,while social inclusion, appeared to be an important domainor amilies. Emotional well-being was mentioned mostrequently by both natural and proessional network mem-bers. Particularly, the domains o rights and physical well-being received less attention. In addition, compared to emo-tional well-being, interpersonal relations, social inclusion
http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-


4/9


: Operationalization o QOL domains into indicators byproessional and natural network members [].

Domains Operationalization by network

members and proessional workers

Personal development Education on the personal level, work,

sel-image

Sel-determination Independency, reedom o choice,

reedom, boundary/limitation

Interpersonalrelations

Social contacts, contact with peoplewith the same intellectual capacities,social network, proessional support,partner

Social inclusion A normal lie, to be accepted by others,

going out/trips

Rights ailored care, general rights, privacy,

children

Emotional well-being

Proximity, structure, appreciation,positive attention, conrmation, to betaken seriously, respecting their own

pace, rest and overview, watch out orover-demanding (= asking toomuch)/be careul orovercharge-Affection, sociability, love,medication, nutrition

Physical well-beingAttention o the physician, coherencebetween emotional and physicalwell-being

Material well-beingPrivate space or living, more staff,nancial and material resources,responsibility or expenses, status

and sel-determination, also material well-being and per-

sonal development were mentioned less oen.Te second research question explores which indica-

tors are related to the mentioned domains, specically inrelation to persons with ID and mental health problems.able shows which indicators were mentioned in relationto a particular domain. Te domains that were discussedmost extensively (emotional well-being, interpersonalrelations, sel-determination, and social inclusion) andtheir related indicators are urther elaborated in the ollowingsection.

.. Domain Sel-Determination

... Freedom o Choice. Both natural network and proes-sional staff members indicated that it is important to enablepersons with ID and mental health problems to choose asmuch as possible, albeit to the extent they can handle. In theiropinion, offering a limited number o choices seems to bethe best option in this respect. Giving too many choices isusually conusing and too abstract, which can lead to stressand anxiety.

I have already noticed, i you offer a limitednumber o choices, she will choose. [. . .] But it hasto be limited, otherwise she is not able to manageit anymore. (Member o the social network)

... Freedom. Proessional network members indicated thatthe QOL o persons with ID and mental health problemsis highly impacted by measures o restricted reedom. Espe-cially in the transition to adulthood, persons suddenly receivemore reedom, which may cause problems. Sufficient supportand guidance is necessary to support people in coping with

this newly gained reedom.I peoples verbal possibilities are sufficient and

you talk about reedom prooundly, they actuallyeel locked up. [. . .]. Tey go out a lot and do manythings, but they rarely go on ones own, which givethem a eeling o being locked up and restraint. Inour opinion, or certain people, the quality o lieis better when they live in such a regimen, but it isnot their opinion. (Proessional in the care system

or people with ID)

... Boundary/Limitation. Persons with ID and mentalhealth problems seem to have difficulties with imposing

limits on themselves. One o the proessional workers denedthis behavior as bottomless. Nutrition, or example, seemssometimes hard to restrain.Tis may be caused by stressand restlessness on an emotional level. Te reuge into oodabuse could be seen as compensational behavior o an emo-tional unbalance. According to the network members, andproessional staff, this seems also true or nancial matterssuch as buying behavior. Tereore, persons with ID andmental health problems directly and indirectly ask to applyexternal boundaries, which provide saety and structure.Lacko insight into the consequences o their actions may accountor this need to external control.

We also need this [restrictions], but or ourselves,we do this intrinsically, we restrict ourselves andwe consider. Tey [people with ID and mentalhealth problems] do not have those skills andmany things are taken over [. . .]. (Proessional inthe care system or people with ID)

.. Domain Interpersonal Relationships

... Social Contact, Social Network. Persons with ID andmental health problems seem to have a great need or socialinteraction, just like people without ID have. In practice, itis not obvious, however, to build and maintain relationships.

Te social network o these people is mostly limited to amily,proessional staff members and ellow clients when residingin support or care services. Network members indicated thatthey perceived their sons or daughters to be more satisedwith the relationships they have with people o thesameintellectual level.

(. . .) Because they ask or it. Tey ask: Searchme a riend!. So those people also know that theirworld is very small and that they are constantlylooking or new contacts. It is rustrating i you donot nd those people.And i you meet someoneone day it ofen the case they, who have socialdisabilities to lose their riends again.Tose people
http://-/?-http://-/?-http://-/?-http://-/?-


5/9


lose interest. (Proessional in the care system orpeople with ID)

... Proessional Guidance. According to proessional staffmembers, the relationship between the client and the supportworker is an essential aspect o the QOL o persons with

ID and mental health problem. An important issue in thisrespect is the large staff turnover within acilities.

o me a major quality-killer is the high turnoverwithin acilities, which to me, is a highly underes-timated actor. (Proessional in the care system or

people with ID)

... Relationships. Clients appear to have a strong need ora long-lasting relationship. Tis can be explained rom thedesire to live a normal lie. Te accounts o proessionalsand natural network members underscore that persons withID and mental health problems want to have a similar lie as

anyone else. In most cases,however, this is notalways possiblewith important consequences or their QOL.

.. Domain Social Inclusion

... A Normal Lie. Both caregivers and amily membersmention that persons with ID and mental health problems

very oen want to ollow the example set orth by peoplewithout ID. Many o them long to having a partner, a job, ahouse, children, and riends.

ake warning rom the standards in society.Everybody marries, everybody get children. . .And

we are just here, we do not have a girlriend andwe could hardly have a beloved because we shouldbe supported in an institution. (Proessional inmental health care)

... o Be Accepted by Others. Many persons with ID andmental health problems deal with a low sel-image, as aresult o, or example, experiences o ailing and difficultiesencountered in their environment. Family members indicatethe importance o having a eeling o acceptance and obelonging somewhere. Because persons with ID andmentalhealth problems oen drop out in social activities, itis important to make sure that people eel included and

accepted.

.. Domain Emotional Well-Being

... Proximity. Te proximity o caregivers and amilymembers is important or the emotional well-being o per-sons with ID and mental health problems. Tis need could beattributed to the emotional restlessness that persons with IDoen experience. Being surrounded by persons on whom toall back seems to offer the necessary saety and security.

... Structure. Family members oen emphasized thatpersons with ID and mental health problems benet rom a

structured lie. Similar to proximity, structure offers a senseo certainty and predictability. One o the parents stated thatstructure needs to be ne-tuned with respect to the personalneeds o the client.

Structure which is considered to be normal, is

not the structure that or instance my daughterneeds. When you presents the normal structureto them, they tryto wriggle, but it do not go well.Itis very hardto imagine in the structureshe needs

or me as well (. . .). (Natural network member)

... Appreciation, Positive Attention, Conrmation, and oBe aken Seriously. Caregivers and amily members experi-ence that the sel-image o these people is positively affectedwhen they eel appreciated and ound useul by others. Oneo the mothers communicated the distressing point thatpeople do not listen to her daughter, which results in adeclining sel-image.Paying attention to the strengths instead

o the limitations is an important aspect to improve onesQOL.

... Respecting Teir Own Pace. An important issue inthe support o people with ID and additional mental healthproblems is to take into account the pace o the client. Oen,people are conronted with too much pressure and too highexpectations, which they cannot ulll.

She could even not manage the work in thesheltered workplace because o the pressure sheexperienced. Now shegoes to a day care centre. Sheworks on her own tempo. She works with people

who accept her and shedo notexperience pressure.It goes well. (Natural network member)

A quick accumulation o incidents has to be avoided.People need some time to cope with changes, problems, andincidents; time to get used, to adapt, and to nd a way to cope,with or without support o amily and/or caregivers.

... Peaceul ime and Having an Overview. Chaos is asource o emotional restlessness and behavioral problems.Having an overview o what the day will consist o maysupport persons with ID and mental health problems.

In our organization, it is intrinsically united withtheir problems that they unction on an emotionallevel in which they are still looking or saety whichthey do not nd because they had a wrongbond beore. Tus emotionally, they struggle orindependence which they could never manage.Tey never experience peace or satisaction. . .(Proessional in thecaresystem orpeople with ID)

... Watch Out or Overdemanding (=Asking oo Much)/BeCareul or Overcharge. Persons with ID in general and peo-ple with additional mental health problems in particular areregularly overdemanded, because o the discrepancy between


6/9


the emotional and intellectual level o development. Over-demanding oen results in mental health and behavioralproblems.

... Affection, Sociability, and Love. Persons with ID andmental health problems have a strong need or affection,

sociability, love, acceptance, security, and saety.

... Medication. Te positive effects o medication on thewell-being o people may not be underestimated but only ina proportioned and considerate way.

4. Discussion

Te aim o this study was twoold. First we wanted to evaluatethe relevanceo the QOL dimensions as conceptualized in themodel o Schalock et al. [] or persons with ID and mentalhealth problems according to amily members and supportworkers. Second, we wanted to explore specic indicatorsrelated to the eight dimensions in relation to persons with IDand mental health problems. We conducted this study basedon the eight-domain QOL conceptual model that has bothetic (universal) and emic (cultural bound, related to speciclie events or circumstances) properties[].

In regard to the rst question, this study conrms therelevance o the eight-domain conceptual QOL model. Alldomains were quoted spontaneously, which argues or themultidimensionality and universality o the construct. As alldomains were reported in the ocus groups, the eight-domainconceptual model is a valid model in QOL-assessment orpersons with ID and mental health problems. Nevertheless,some domains were more quoted than others. Te mostcommon domains reported by proessional workers wereemotional well-being, interpersonal relationships, and sel-determination. Te domains reported most by network mem-bers were emotional well-being, social inclusion and inter-personal relationships. Tese results conrm the assumptionthat QOL may vary in relative value and importance. Terelative importance o the domain emotional well-being inpersons with ID andmental healthproblemscan be explainedby the vulnerability in emotional (and not only intellectual)development. People with ID and mental health problemsare at risk because o the discrepancy between cognitive andemotional development []. Because the environment opeople with ID predominantly addresses the easily percep-

tible cognitive development instead o the lower and maskedemotional development, there is a risk to overestimate andovercharge people with ID.

With regard to the second question, we evaluated howamily members and support workers operationalize thedifferent domains or people with ID and mental healthproblems. Tis part o the study revealed some interestingand creative responses which gave on the one hand insightin the specicity o this population and on the other handoffered some clues or support strategies. On the level o sel-determination amily members and support workers argueor ownbut limitedchoices. Another important observa-tion is that the clear plea or reedom does not conict with

a certain amount o regulation. Furthermore, indicators oninterpersonal relationships and social inclusion (social con-tacts, social network, support, integration, and participation)turn out to be less specic. Finally, the domain on emotionalwell-being was indicated most. Its interpretation in indicators(e.g., nearness, structure, positive attention, respecting own

pace, watching out or over-demanding/overcharge) encour-ages reection and needs to be considered as needs in thesupport plans o those vulnerable clients.

Te authors put orward two major implications to theeld rom the data reported in this paper.

First, the QOL construct has universal properties and ison the level o domains the same or all people. Tis rame-work supports the equality o persons, which is reected byconcepts including sel-determination, emancipation, inclu-sion and empowerment.

Second, the presented challenges and difficulties withregard to the QOL o persons with ID and mental healthproblems clearly illustrate the difficult task natural andproessional network members have to ull when support-ing their amily members and clients. Te act that it isnot evident to cope with these challenges may lead to awrong application o QOL principles, albeit with the bestintentions. We would like to discuss two potentially harmulconsequences thatin our opinioncan be situated on acontinuum o extreme control and elimination o all risks onthe one hand and a laisser aire, laisser passer attitude onthe other hand.

Te concept o duty o care as expressed by many serviceproviders is oen used as a rationale or eliminating risks andthereore inhibits a person-centered approach []. Tis leadsto a bounded empowerment where clients are supported inindependence as long as it tswithin the boundaries o healthand saety []. o the authors view, an integrative sup-port paradigm offers a ramework to consider the conceptso person-centered approach with opportunities or risk-taking and real empowerment as essential elements o aholistic view on supporting clients with ID and mental healthproblems[]. Support staff should reect on the individualpathology discourse people are put in and the way in whichthis inhibits opportunities in making choices and havingcontrol []. Instead o questioning the relevance o the QOLdomains in people with ID and mental health problems, itseems important to reect on what is needed and what isworking in the areas o QOL[].

On the other hand, because o the importance o issues

with regard to the social-emotional development, structure,control, and predictability may not be considered as negativean sich. On the contrary, these regulating measures mayimprove ones QOL. It goes without saying, however, that thismay not be used as an excuse to take over all responsibilitieso persons with ID and mental health problems.

Tere are some limitations in this study. First, althoughthis study was the result o a partnership between threeorganizations, the results o the ocus groups cannot begeneralized due to the limitedsample size. Second, the clientsperspectives about their own QOL are not reported in thispaper. Tey are part o another study and will be published inthe uture.
http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-http://-/?-


7/9


Based on the results o this study, we can conclude thatthe natural and proessional network members are challengedto look or the most appropriate support strategies that leadto an improvement in the QOL o their amily membersor clients with ID and cooccurring mental health problems.Tere is, however, a real risk that the QOL principles are not

properly applied, which could lead to an elimination o risksand the use o empowerment within very limited contextson the one hand or a laisser aire, laisser passer attitudethat lacks the necessary structure and predictability on theother hand. When both aspects o empowerment and controlare used in an integrated manner, the application o theQOL paradigm could lead to positive outcomes concerningsel-determination, interdependence, social inclusion, andemotional development.

Acknowledgments

Te authors would like to thank the participating am-

ily/network members o persons with ID and mental healthproblems and also the proessionals who are employed in thethree acilities represented in this research.

References

[] C. Claes, G. van Hove, J. van Loon, S. Vandevelde, and R.L. Schalock, Quality o lie measurement in the eld ointellectual disabilities: eight principles or assessing quality olie-related personal outcomes,Social Indicators Research, vol., no. , pp. , .

[] R. A. Cummins, Assessingqualityo lie, inAssessing Quality oLie or People with Disabilities: Models, Research, and Practice,

R. I. Brown, Ed., pp. , Stanley Tornes, London, UK,.

[] R. L. Schalock, G. F. Gardner, and V. J. Bradley,Quality o Lieor Peoplewith Intellectual and Other Developmental Disabilities:Applications Across Individuals, Organizations, Communities,and Systems, American Association on Intellectual and Devel-opmental Disabilities, Washington, DC, USA, .

[] R. L. Schalock,M. A. Verdugo, G. Bonham, F. Fantova, andJ. vanLoon,Enhancing personal outcomes: organizational strategies,guidelines, and examples, Journal o Policy and Practice inIntellectual Disabilities, vol. , no. , pp. , .

[] M. A. Verdugo, R. L. Schalock, K. D. Keith, and R. J. Stancliffe,Quality o lie and its measurement: important principles and

guidelines, Journal o Intellectual Disability Research, vol. ,no. , pp. , .

[] R. L. Schalock, M. A. Verdugo, C. Jenaro et al., Cross-culturalstudy o quality o lie indicators,American Journal on MentalRetardation, vol. , no. , pp. , .

[] C. Hughes, B. Hwang, J. H. Kim, L. . Eisenman, and D.J. Killian, Quality o lie in applied research: a review andanalysis o empirical measures, American Journal on MentalRetardation, vol. , no. , pp. , .

[] G. S. Bonham, S. Basehart, R. L. Schalock, C. B. Marchand, N.Kirchner, and J. M. Rumenap, Consumer-based quality o lieassessment: the Maryland ask me! project,Mental Retardation,vol. , no. , pp. , .

[] R. L. Schalock, K. D. Keith, M. A. Verdugo, and L. E. Gomez,Quality o lie model development and use in the eld o intel-lectual disability, in Quality o Lie: Teory and Implementation,R. Kober, Ed., pp. , Sage, New York, NY, USA, .

[] C. Jenaro, M. A. Verdugo, C. Caballo et al., Cross-culturalstudy o person-centred quality o lie domains and indicators:a replication,Journal o Intellectual Disability Research, vol. ,no. , pp. , .

[] R. L. Schalock and M. A. Verdugo, Handbook on Quality oLie or Human Service Practitioners, American Association onMental Retardation, Washington, DC, USA, .

[] M. Wang, R. L. Schalock, M. A. Verdugo, and C. Jenaro,Examining the actor structure and hierarchical nature o thequality o lie construct, American Journal on Intellectual andDevelopmental Disabilities, vol. , no. , pp. , .

[] C. F. Yen, J. D. Lin, C. H. Loh, L. Shi, and S. W. Hsu,Determinants o prescription drug use by adolescents withintellectual disabilities in aiwan, Research in DevelopmentalDisabilities, vol. , no. , pp. , .

[] A. Dosen, Psychische stoornissen, gedragsproblemen en

verstandelijke handicap, in Een integratieve benadering bijkinderen en volwassenen, Koninklijke Van Gorcum, Assen, TeNetherlands, .

[] E. Emerson, Challenging Behaviour:Analysis and InterventioninPeoplewith IntellectualDisabilities, CambridgeUniversity Press,Cambridge, UK, .

[] V. Williams and P. Heslop, Mental health support needs opeople with a learning difficulty: A medical or a social model?Disability and Society, vol. , no. , pp. , .

[] C. P. Hemmings, S. Gravestock, M. Pickard, and N. Bouras,Psychiatric symptoms and problem behaviours in peoplewith intellectual disabilities, Journal o Intellectual DisabilityResearch, vol. , no. , pp. , .

[] A. Dosen and K. Day, Eds., reating Mental Illness andBehaviour Disorders in Children and Adults with Mental Retar-dation, American Psychiatric Press, Washington, DC, USA,.

[] E. Vandemaele,Exploratie onderzoek naar kwaliteit van levenbij mensen met een verstandelijke beperking en bijkomendepsychische-en/o gedragsproblemen [scriptie ingediend tot hetbehalenvan de graad van Master in de Pedagogische Wetenschap-pen], Universiteit Gent, .

[] C. Hudson and J. Chan, Individuals with intellectual disabilityand mental illness: a literature review, Australian Journal oSocial Issues, vol. , no. , pp. , .

[] W. Vanderplasschen, K. Lievens, and G. Roets, Opvang,begeleiding en behandeling van kinderen en jongeren envan volwassenen met verstandelijke beperkingen binnen degeestelijke gezondheidszorg, in Vanderplasschen, Vandevelde,Claes, Broekaert & Van Hove, Orthopedagogische werkveldenin beweging: organisatie en tendensen, pp. , Garant,Antwerpen, Belgium, .

[] M. Patton, Qualitative Research & Evaluation Methods, Sage,Tousand Oaks, Cali, USA, .

[] F. Parley, What does vulnerability mean? British Journal oLearning Disabilities, vol. , pp. , .

[] . Jingree andW. M. L. Finlay, You cantdo it.. its theory ratherthan practice: staff use o the practice/principle rhetoricaldevice in talk on empowering people with learning disabilities,Discourse and Society, vol. , no. , pp. , .


8/9


[] J. R. Tompson, V. J. Bradley, W. H. E. Buntinx, R. L. Schalock,K. A. Shogren, M. E. Snell et al., Conceptualizing supportsand the support needs o people with intellectual disability,Intellectual and Developmental Disabilities, vol. , no. , pp., .

[] S. Holburn,C. D.Cea, L. Coull,and D.Goode, What is workingand not working: using ocus groups to address quality o lieo people living in group homes,Journal o Developmental andPhysical Disabilities, vol. , no. , pp. , .


9/9

Submit your manuscripts at

http://www.hindawi.com

Quality of Life in Persons with Intellectual Disabilities and Mental Health Problems: An Explorative...

Documents

Transcript of Quality of Life in Persons with Intellectual Disabilities and Mental Health Problems: An Explorative...