ABSTRACT Introduction: Many challenges are faced in the optimum management of a family caring for children with developmental disorders (FCCDD). Case Report: This case report highlights an isolated Malaysian family as victims of discrimination against special children, illustrates the factors and challenges that are associated with it. We report our experience, as part of a multiprofessional team in managing an isolated FCCDD. Our role of service providers, became that of the sole lifeline the family depended upon. We helped the family return from the brink of death; they helped us understand that no family should be an island and every family has a right to optimum care. Conclusion: Isolation that occurs in FCCDD is real and can be influenced by multiple factors such as low education and income. To help an FCCDD is to help Malaysian society overcome its prejudices. Getting FCCDD to participate in decisions regarding treatment and in other biopsychosocial needs is crucial i

Abd Rahman

Fairuz Nazri

Marhani Sharip

Midin

Nik Jaafar

Nik Ruzyanei

Shalisah Fong

Sit Loh

Wan Ismail

Wan Salwina

CiteSeerX

IJCRI – International Journal of Case Reports and Images, Vol. 3 No. 6, June 201 2. ISSN – [0976-31 98]
IJCRI 201 2;3(6):46–49.
www.ijcasereportsandimages.com
Reducing the isolation: A malaysian family in need
Fairuz Nazri Abd Rahman,Wan Salwina Wan Ismail,Nik Ruzyanei Nik Jaafar, Loh Sit Fong, Shalisah Sharip,Marhani Midin
ABSTRACT
Introduction: Many challenges are faced in theoptimum management of a family caring forchildren with developmental disorders(FCCDD). Case Report: This case reporthighlights an isolated Malaysian family asvictims of discrimination against specialchildren, illustrates the factors and challengesthat are associated with it. We report ourexperience, as part of a multiprofessional teamin managing an isolated FCCDD. Our role ofservice providers, became that of the solelifeline the family depended upon. We helpedthe family return from the brink of death; theyhelped us understand that no family should bean island and every family has a right tooptimum care. Conclusion: Isolation that occursin FCCDD is real and can be influenced bymultiple factors such as low education andincome. To help an FCCDD is to help Malaysiansociety overcome its prejudices. Getting FCCDDto participate in decisions regarding treatmentand in other bio­psycho­social needs is crucial in
helping them prepare for the trials andtribulations of life. Strong awareness must bepresent in all Malaysian service providers toprevent neglect and mistreatment in thispopulation as well as to effect early andappropriate intervention.
Keywords: Children, Developmental disorder,Family, Multiprofessional, Service provider
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Rahman FNA, Ismail WSW, Jaafar NRN, Fong LS,Sharip S, Midin M. Reducing the isolation: A malaysianfamily in need. International Journal of Case Reportsand Images 2012;3(6):46–49.
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doi:10.5348/ijcri­2012­06­138­CR­11
INTRODUCTION
Stress levels of families caring for children withdevelopmental disorders (FCCDD) are high, more so forautism compared to other developmental problems orspecial health care needs [1]. The same goes for parentaldepression scores [2]. Discrimination against FCCDD isa grave problem in almost every society, to the extentthat some may be driven to suicide. Suicide pacts arerare, only one occurring in four hundred completedsuicides, mostly developed out of the dynamics of therelationship between husbands and wives [3]. In spite ofthe grave consequences, the scenario of such families atrisk in Malaysia has not been well studied. In such acountry steeped in multiple traditions and cultures,such issues have not been discussed openly, as itcustomarily also imbues disgrace and dishonor to boththe special children and their families. The familysuicide pacts highlighted in the media [4] have served asan impetus for psychiatric services to look out
CASE REPORT OPEN ACCESS
Fairuz Nazri Abd Rahman1 , Wan Salwina Wan Ismail2,
Nik Ruzyanei Nik Jaafar2, Loh Sit Fong1 , Shalisah
Sharip1 , Marhani Midin2
Affi l iations: 1 Lecturer, Psychiatry Department, Universiti
Kebangsaan Malaysia, Kuala Lumpur, Malaysia;
2Associate professor, Psychiatry Department, Universiti
Kebangsaan Malaysia, Kuala Lumpur, Malaysia.
Corresponding Author: Fairuz Nazri Abd Rahman,
Lecturer and Child Psychiatrist, Department of Psychiatry,
Universiti Kebangsaan Malaysia Medical Center, 56000
Kuala Lumpur, Malaysia; Ph: 603 91 4561 42/603
91 4561 59/ 601 93674736; Fax: 603 91 456681 ; Email :
fairuznar@gmail .com
Received: 1 4 January 201 2
Accepted: 01 February 201 2
Published: 30 June 201 2
Rahman et al. 46
IJCRI – International Journal of Case Reports and Images, Vol. 3 No. 6, June 201 2. ISSN – [0976-31 98]
IJCRI 201 2;3(6):46–49.
www.ijcasereportsandimages.com Rahman et al. 47
specifically for families with risk factors for such actsand reach out to them actively.The objectives of this case report are to highlight anisolated Malaysian family as victims of discriminationagainst special children, illustrate the factors that areassociated with it, and outline the challenges faced inthe management of a family caring for children withdevelopmental disorders (FCCDD). We present here acase of a family with such risk factors and the measurestaken so far in engaging with them and improving theirpsychosocial support.
CASE REPORT
C, a 36­year­old Chinese housewife with previoushistory of overdose presented with 6­month history ofmajor depression, mainly stemming from becominghousebound with the care of her special children andher worries regarding husband. She could not get helpfrom her own family because of their own on­goingproblems. She was treated with fluvoxamine 200 mgON. The clinician’s main concern was patient’s suicidalideation.Her 7­year­old daughter, G, diagnosed with autism,had defaulted the hospital’s occupational therapy andspeech therapy, as well as a non­governmentalorganization (NGO)’s early intervention program. Shehad marked behavior problems in terms of being clingy,self­injurious behavior and hyperactivity. She wastreated with methylphenidate (SR) 20 mg OM andrisperidone 5 drops BD, while planned for behaviortherapy and re­engagement with special education. C’s9­year­old son, J, diagnosed with pervasivedevelopmental disorder not otherwise specified andattention deficit hyperactive disorder (ADHD), was alsotreated with methylphenidate while missinggovernment special education because his father wastoo tired to send him. J had become disturbed andangry by family members’ behavior towards each other.C’s husband, L, a 39­year­old Chinese snooker centrenight supervisor was the sole breadwinner as well as themain transport provider for the family. He was a knowncase of depression who had been self­medicatinghimself with alcohol. For the past decade he had beenrejected by his own family, believing his pastwrongdoing had led to him being cursed with autisticchildren. Asian society often assumes the misdeeds ofthe parents brought the misfortune upon their children.L also feared C would one day leave him for anotherman.Foreseeing a gloomy future for them and being ofabsent religious conviction, he contemplated a familysuicide pact. They lived in a high­rise condominium.The family was extremely isolated, with no contactwith neighbors nor extended family, language barrier toengagement with Malay­speaking services providersand previous bitter experience with religious groups andNGOs. The family slept during daytime while stayed upat night as they depended on the father for permissionand transport for outings. They shied away from the
public because of shame regarding daughter’s disruptivebehavior. So much so they kept to themselves duringChinese New Year while others celebrated with familyand friends.The main focus of management was positiveengagement with the family as a whole unit. While eachfamily member was assigned to individual therapy, afamily meeting was carried out with a multiprofessionalteam, including adult and child psychiatrists,psychologist, social worker and community psychiatrist.It became apparent that parent education and trainingwere required to control the children’s disruptivebehavior and dispel L’s myths. Both parents had notcompleted secondary education. Home visits wereplanned in light of their suicidal ideation, however onlyone could be carried out as the family proved to bedifficult to contact.Five years on, many interventions have beenattempted. Their suicidal ideation subsided as theybecame engaged with psychiatric services. However, thetherapeutic relationship was challenging in that theymainly came for medication, and outside appointmenthours. This behavior and father’s false convictions madeengagement with other services such as social welfare,education, parent groups, religious groups and NGOsimpossible. Eventually both children stopped schoolingand L moved the whole family to Borneo due to workcommitments. They continue to come every few monthsfor their prescriptions. However, L’s mistrust of theoutside world continues to limit the development of theother family members. C has learnt to compensate forthis by reading self­help books.
DISCUSSION
Features of suicide pacts include social isolation,dependence on one another, unemployment, seriousphysical illness and being under threat of separation [3].The family had several of these features, thus in absenceof a fully supportive family­centred service network, itwas thought unwise to separate the family members byadmitting any one of them to hospital. Besides thisextreme outcome, adverse outcomes of being children tomentally ill patients are well­established [5, 6]. Suchchildren are at risk of developing psychiatric disorders,poor physical health, abuse and neglect.Having psychiatric disabilities and co­morbiditiessuch as autism, mental retardation and ADHD placesthem at higher risk for abuse [7]. This could be due tomultiple reasons, such as inability to differentiatebetween normal behaviour and abusive behaviour,difficulties in reporting due to lack of communicationskills, difficulty in being educated regarding issues dueto their learning disability and impaired judgement indifferentiating ‘safe’ and ‘unsafe’ environments andpersons. Family factors such as level of income andeducation contribute to the increased risk of abuse andneglect.There were barriers to services in terms of providerand patient issues. Provider issues include encounters
IJCRI – International Journal of Case Reports and Images, Vol. 3 No. 6, June 201 2. ISSN – [0976-31 98]
IJCRI 201 2;3(6):46–49.
www.ijcasereportsandimages.com Rahman et al. 48
with staff and ability/flexibility to accommodatepatients’ diverse needs. Patient issues include fulfillingbasic needs first, cultural and language differences, aswell as ability to come, in terms of time, transport andfinances. The family’s problems in themselves were notimpossible to solve. For example, G’s challengingbehavior could be treated with targeted behavioralinterventions and specific medications [8]. The realchallenge came in widening social support for thefamily which traditionally would have includedextended family members and neighbors. A way ofreducing stigma is via public campaign. One example is‘Changing Minds’ by the British Royal College ofPsychiatrists [9].The increased stress experienced by patients andneed for support for families require family­centeredand culturally­sensitive services [10], especially inMalaysia. Here, there is a clear need for a patient­focused multidisciplinary team delivering a family­centered service [11]. Principles embodied in family­centered services include respect for all families,recognition of each family’s strengths, unbiasedinformation­sharing, collaborating with families andempowering them, continuity of care, provision of afamily­friendly environment and ability to care forother family members besides the patient [12].Integrated services between adult and child mentalhealth services are also essential. They need to beresponsive depending on the urgency of the situation,all staff trained to support and protect patients andtheir families. They need to be able to work together inmeetings and visits, engage patients and manage crisesas well as community interventions [13].
CONCLUSION
In conclusion, the isolated must be given seriousattention. Children with special needs can be verychallenging for parents and treatment providers alike.We should continuously look for psychiatric problemsin patient’s family and manage them accordingly. Manybarriers stop patients from receiving help and family­centered, integrated services are required.
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Author ContributionsFairuz Nazri Abd Rahman – Conception and design,Acquisition of data, Analysis and interpretation of data,Drafting the article, Critical revision of the article, Finalapproval of the version to be publishedWan Salwina Wan Ismail – Acquisition of data, Analysisand interpretation of data, Critical revision of thearticle, Final approval of the version to be publishedNik Ruzyanei Nik Jaafar – Acquisition of data, Analysisand interpretation of data, Critical revision of thearticle, Final approval of the version to be publishedLoh Sit Fong – Acquisition of data, Critical revision ofthe article, Final approval of the version to be published
Shalisah Sharip – Acquisition of data, Critical revision ofthe article, Final approval of the version to be publishedMarhani Midin – Acquisition of data, Analysis andinterpretation of data, Critical revision of the article,Final approval of the version to be published
GuarantorThe corresponding author is the guarantor ofsubmission.
Conflict of InterestAuthors declare no conflict of interest.
Copyright© Fairuz Nazri Abd Rahman et al. 2012; This article isdistributed under the terms of Creative Commonsattribution 3.0 License which permits unrestricted use,distribution and reproduction in any means providedthe original authors and original publisher are properlycredited. (Please see www.ijcasereportsandimages.com/copyright­policy.php for more information.)
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IJCRI – International Journal of Case Reports and Images, Vol. 3 No. 6, June 201 2. ISSN – [0976-31 98]
IJCRI 201 2;3(6):46–49.
www.ijcasereportsandimages.com Rahman et al. 49
11. Margetts JK, Le Couteur A, Croom S. Families in astate of flux: the experience of grandparents inautism spectrum disorder. Child: Care, Health &Development 2006;32(5):565–74.12. Koroloff NM, Friesen BJ. Challenges in conductingfamily­centered mental health research. Journal ofEmotional & Behavioral Disorders 1997;5(3).13. Falkov A, ed. Crossing Bridges: training resourcesfor working with mentally ill parents and theirchildren. UK Department of Health. 1998;ISBN 1900600 48 X.


Reducing the isolation: A malaysian family in need

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Reducing the isolation: A malaysian family in need

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