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Challenges, coping strategies, and unmet needs of families with a child with Autism Spectrum Disorder in Goa, India

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Autism Spectrum Disorders (ASD) are increasingly recognized in developing countries like India. However, little is known about the experiences of parents raising a child with ASD. This study aimed to describe the experiences of families in Goa, India
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  Challenges, Coping Strategies, and Unmet Needs of Families with aChild with Autism Spectrum Disorder in Goa, India Gauri Divan, Vivek Vajaratkar, Miraj U. Desai, Luisa Strik-Lievers, and Vikram Patel Autism Spectrum Disorders (ASD) are increasingly recognized in developing countries like India. However, little is knownabout the experiences of parents raising a child with ASD. This study aimed to describe the experiences of families in Goa,India with a view to understanding the unmet needs of families raising a child with ASD. Twenty in-depth interviews andnine focus group discussions were carried out with families of children with ASD and key community stakeholders suchas special educators, teachers, and parents of typically developing children. This qualitative data was triangulated toexplore the experiences, life impact, and unmet needs of raising a child with ASD. Key findings suggest that raising achild with ASD puts a tremendous strain on families due to competing commitments, often leading to initial socialwithdrawal with later reintegration into social networks. Second, the impact is multidimensional, involving the personalsphere but also extending into the wider community with negative experiences of discrimination. Third, parents activelyrespond to these challenges through a range of approaches with help from existing and new social support networks andhealth care providers. Fourth, professionals from the health, education, and religious sectors have a low awareness of theunique needs of families living with ASD which leads to a considerable economic and emotional burden on families.Finally, as a consequence of these experiences, several unmet needs can be identified, notably for supporting increasinglyisolated families and the limited access to multidisciplinary evidence-based services for ASD.  Autism Res  2012, 5:190–200 . © 2012 International Society for Autism Research, Wiley Periodicals, Inc. Keywords:  Autism Spectrum Disorders; India; impact; qualitative Introduction The Autism Spectrum Disorders (ASD) once consideredrare [Gillberg, Steffenburg, & Schaumann, 1991] are nowincreasingly recognized throughout the world [Fom-bonne, 2009]. There have been a number of attempts toexamine the experiences of parenting a child with ASD indeveloped countries [Altiere & von Kluge, 2009; Gray,1994, 2001, 2006; Luong, Yoder, & Canham, 2009; Myers,2009; Shaked, 2005; Twoy, Connolly, & Novak, 2007;Woodgate, Ateah, & Secco, 2008]. Parents experiencechallenges at a personal and social level across variouscontexts. These include an increase in personal stress,effects on interpersonal relationships, as well as increas-ing isolation [Altiere & von Kluge, 2009; Wang et al.,2011].These studies have shown that while the disruptivebehavioral problems associated with ASD increase paren-tal stress, parents harness a range of strategies that helpthem come to terms with the parenting experience.Examples of such strategies include acceptance of thebiological basis for ASD (“accommodation”),”resistance,”to the biological basis, and “transcendence” of them (e.g.,using a spiritual pathway to understanding their situa-tion) [Gray, 2001]. Parental approaches across the studieshave included empowering themselves with information,withdrawing from social interactions, redirecting theirenergies into areas beyond the child, changing theirexpectations, and working toward inclusion and greateracceptance [Gray, 2006; Luong et al., 2009]. However,unmet needs remain in both high and lower resourcesettings and primarily relate to the access to appropriateservices. [Brown et al., 2010]Contemporary literature on ASD in India has predomi-nantly focused on reporting symptoms and profiles of small samples of patients from specialist centers or specialschools [Juneja, Sharma, & Mukherjee, 2010; Kalra, Seth,& Sapra, 2005; Thomas, 2011]. While there is a growingbody of literature which has explored the impact of otherdevelopmental disabilities on Indian families and theaccompanying social ostracism and stigma that they face[Dhar, 2009; Edwardraj, et al., 2010; Gupta A, 2004;Kembhavi, 2009], there is comparatively little workwhich has explored the impact of ASD. A notable excep-tion is the work of Daley in the 1990s [Daley, 2004; Daley& Sigman, 2002] who observed that whereas the Indian From the Sangath, 841/1 Alto Porvorim, Goa, India (G.D., V.V., M.U.D., V.P.); Department of Psychology, Fordham University, Bronx, New York (M.U.D.);Neuropsichiatria Infantile Ospedale San Paolo, Università degli Studi di Milano, Milano, Italy (L.S.-L.); Faculty of Epidemiology & Population Health,London School of Hygiene & Tropical Medicine, London, UK (V.P.)Received August 31, 2011; accepted for publication January 30, 2012Address for correspondence and reprints: Gauri Divan, Sangath, 841/1 Alto Porvorim, Goa 403521, India. E-mail: gauridivan@gmail.com Grant Sponsor  Autism Speaks  Grant Number  5621Published online 30 March 2012 in Wiley Online Library (wileyonlinelibrary.com)DOI: 10.1002/aur.1225© 2012 International Society for Autism Research, Wiley Periodicals, Inc. INSAR 190 Autism Research 5: 190–200, 2012 RESEARCH ARTICLE  specialist biomedical professional had a similar under-standing of ASD as in the West, Indian parents soughthelp later, possibly due to varying cultural perceptions.Having a child is a personal as well as a social experience;when problems are experienced in the parenting process,the perceptions, understandings, and attitudes of com-munity stakeholders, such as educators and professionals,also influence parents’ patterns of seeking care [Mandell& Novak, 2005].The state of Goa, in Western India, with a population of 1.4million,isa“transitional”statewithblurringofurban–rural distinction and better economic and health indica-torscomparedtothenationalaverage;forexample,femaleliteracy is 75%, and the rate of institutional deliveries is94%comparedwiththenationalaverageof54%and40%,respectively [Census of India, 2001; National FamilyHealth Survey 3 (NFHS-3) 2005–2006 India, 2007]. In thiscontext, survival is not a significant child health concern,and developmental disabilities are emerging as a childhealth priority. As in other states in India, the delivery of healthcareisconductedboththroughapubliclyfinancedgovernmenthealthsystemandafeelevyingprivatehealthsector [Reddy et al., 2011]. The health care system is plu-ralistic with people accessing western allopathic medicinealong with a variety of other systems of medicine (such asAyurveda and Homeopathy) [Pal, Das, Sengupta, &Chaudhury, 2002]. While there is no universal healthcoverage in India, a range of state and central welfareschemes address issues of disability and chronic diseases.Building on the sparse evidence base, this paper aims toexplore the life impact of raising a child with ASD, howfamilies respond to the challenges they face, and theirunmet needs for care, in Goa, India. Knowledge of theimpact on families with a child with ASD could helpidentify unmet needs. In addition, a more contextualunderstanding of life impact would add to the growingresearch on special needs which focuses on more thanjust the extra burdens on families and instead describesthe complex experiences and practical actions of families[Gray, 1993; Green, 2007]. Methodology Setting  The present study was part of the Autism Research andTraining Initiative (ARTI), funded by Autism Speaks, USAand implemented by a community-based nonprofit orga-nization providing services for and researching develop-mental disabilities and mental disorders in Goa, India.  Participants Two kinds of participants were recruited: parents of achild diagnosed with ASD and stakeholders concernedwith child health in the community. Twenty in-depthinterviews (IDIs) (Table 1) and nine focus group discus-sions (FGDs) involving a total of 98 participants wereconducted. The participants were purposefully selected toensure representation of diverse subgroups of the popu-lation in Goa. Ten families (seven mothers, one father,and two couples) were recruited via key informants atspecial schools and child development centers. Childrenhad been diagnosed by qualified clinicians against stan-dard diagnostic criterion for ASD. Parent participantswere purposively sampled for their ability and opennessto share personal experiences; as a result, families thatwere recruited unevenly represented a higher educationaland socioeconomic group background. IDIs were alsoconducted with a range of stakeholders who were activelyinvolved in the care of children with disability either at apersonal level (such as general practitioners [GP] ) or atthe level of policy (such as senior administrators in socialwelfare and education). Focus group discussions wereconducted with teachers from varied educational settingsin urban and rural locations. They included thoseworking with mainstream children at a preschool andprimary level as well as special educators directlyinvolved with children with ASD. The special educatorswho participated were familiar with four of the childrenwhose parents were interviewed. Community percep-tions were elicited by conducting FGDs with parents of children in mainstream schools.  Interview Design and Format  The in-depth semi-structured interviews with familiesexplored themes which covered early experiences of theirchild, the recognition of a difference in the child’s behav-iors, pathways to and patterns of help-seeking, experi-ences with health care providers, and unmet needs. Thequestions were open ended, and researchers explored theparent experience to get rich details of the lived experi-ence. The full interview guide has been published else-where [Desai, Divan, Wertz, & Patel, In Press]. Eachinterview was conducted by two researchers, one as a leadinterviewer and the other as a note taker in a singlesitting lasting 1 to 3 hr with additional follow-up viatelephone as needed. The language used was of the par-ticipants’ preference (viz., Konkani, Marathi, English, orHindi).The themes for the focus group discussions covered theunderstanding of child development, the awareness andknowledge of disabilities including its causes, the experi-ences of stigma and discrimination observed in the com-munity toward families and persons with disability, andcommunity perceptions of inclusion.For IDIs and FGDs with stakeholders unfamiliar withthe diagnostic category of ASD, we presented a casevignette of ASD based on the Diagnostic and StatisticalManual of Mental Disorders (DSM IV) criteria to elicit 191Divan et al./Impact of Autism on families in Goa, India INSAR  explanatory models about the condition. This casevignette represented a 6-year old with all the characteris-tic features of ASD. Case vignettes have been used tointroduce community stakeholders to unfamiliar healthconditions without using biomedical labels by creating avivid, simple-to-understand “picture” of the disorder. Theuse of such vignettes to elicit views on mental disorders isa well-established methodology [Patel et al., 2007; Wiget al., 1980; Ying, 1990]. In addition to vignette-basedresponses, interviewees were also asked to think of spe-cific children they may know within the community withbehaviors similar to the child described in the casevignette.  Data Collection The setting for data collection ranged from homes, theschool, or the workplace. IDIs and FGDs were conductedby six qualitative researchers fluent in Konkani, Marathi,Hindi, and English. They were all bachelor degree holderswith two having masters equivalent degrees and one ata doctoral level. All researchers received qualitativeresearch training from local and national level resourcepersons. Each IDI and FGD was conducted by tworesearchers, one as a lead interviewer and the other as anote taker in a single setting lasting 1 to 3 hr. All inter-views were simultaneously recorded.  Analysis The analytic process is shown in Figure 1. The tape-recorded English, Konkani, Hindi, and Marathi inter-views were transcribed verbatim into English by bilingualresearchers. Local language interviews were translatedinto English by research members with fluency of eachrespective language. Before undertaking analysis, theaudiotapes and transcripts were compared for accuracy byVivek Vajaratkar and Gauri Divan. Meaningless or redun-dant utterances (“you know” or “this thing”) were elimi-nated to aid in clarification of analysis and readability.Any added language was placed in brackets and wereintended to clarify particular sentences. The interviewthemes were developed iteratively, starting with the set of research questions by the authors. ATLAS-ti software(Berlin, Germany Scientific Software Development, 1999)was used for organizing and coding data. Codes from thedata were identified and defined in an iterative manner.First, two interviews were coded by the three senior staff to generate a preliminary coding system until a consen-sus coding system evolved. This coding system was thentested by senior staff to achieve reliability by carrying outblinded double coding of two interviews. Analysis aimedat understanding the recognition of difference in thechild’s behaviors, the pathways to and patterns of helpseeking, the impact, the coping strategies, and the unmet Table 1.  Participantgroupforin-depthinterviewsandfocusgroupdiscussions IndepthinterviewswithfamiliesofchildrenwithASD  n  =  10 * Familystructure Joint/extended 8Nuclear 2Religion Hindu 7Christian 3AgeofchildwithASD(inyears) <5 15–10 510–20 3>20 1Highesteducationalqualificationofeitherparent School 1Highschool 2Graduate 7GenderofASDchild Male 9Female 1Occupationoftheheadoffamily Agriculturallaborer 1Governmentemployee 2Privateemployment 7In-depthinterviewswithstakeholderinvolvedinthecareofchildrenwithdisability  n  =  10GovernmentofficialsinDepartmentsofSocialWelfareandEducation 4Generalpractitioners[GP] 6Focusgroupdiscussionswithstakeholdergroups  n  =  74Teachersinmainstreamschools[urban]/[rural] 6/10TeachersininclusiveresourceroominamainstreamschoolsworkingwithchildrenwithASD 6Teachersinspecialschoolsworkingexclusivelywithchildrenwithdisability[urban]/[rural] 7/8Communitypreschoolteachers[urban]/[rural] 7/14Parentsoftypicallygrowingchildren[urban]/[rural] 8/10 * Tenfamilieswhichincludedsevenmothers,onefather,andtwocouples. INSAR 192 Divan et al./Impact of Autism on families in Goa, India  needs of families with children with ASD. This resulted ina refinement of the coding framework. Three transcriptswere then double coded, discrepancies discussed, and afinal coding framework evolved. The remaining tran-scripts were coded using this framework.  Ethical Issues Participation was voluntary and informed writtenconsent was required. Ethical approval was obtained frominstitutional review board of Sangath. All results are pre-sented in an anonymous fashion with the least possibleidentifying information. Results This paper describes the impact and changes to theparents’ lives as they navigate the world around themwith a child with ASD, the challenges parents face in theirpersonal lives within the community and while negoti-ating the health care and education system. Integratedinto these narratives are the coping strategies and practi-cal actions parents engaged in during this process. Thephenomenology of the parents’ experience of raising achild with ASD has been described in a concurrent paper[Desai et al., In Press].  Impact on Personal Lives: Competing Commitments Most parents, especially mothers, have a strong commit-ment toward their children, spouse, and other familymembers. This section describes how these commitmentscompete at a personal level and affect relationships whilecaring for a child with ASD.  Parents’ emotions and health.  Most parents whenthey perceived their child was “different,” sought under-standing and assistance. Obtaining a diagnosis was acomplex process, which is described later; however afteran initial indifference to the diagnosis, reactions rangedfrom shock, disbelief, or rejection of the label. Initially, IDI or FGDTranslated into English Corroborated by notes taken during interview Authentication of translation by back translation and review of audio tapes by senior staff Coding of interviews using ATLAS Ti Initial themes Early behaviors, general health, recognition of a difference, local names, reactions to the diagnosis, causes, help seeking, stigma and discrimination, impact (disability), support (family and community), treatments, unmet needs Preliminary coding consensus achieved across 2 IDIs Blinded double coding of two interviews. Further refinement of coding framework Three transcripts double-coded, discrepancies discussed, and a revised coding framework established Codes explored for this paper Impact on personal lives, impact in the school setting, impact in the community, pathways tocare and unmet needs Figure 1.  Theanalyticprocess. 193Divan et al./Impact of Autism on families in Goa, India INSAR  most parents had yet to consider the concrete, long-rangeimplication that was implied when professionals diag-nosed “autism.” Almost all parents had never or onlyvaguely heard of ASD prior to receiving the diagnosis. Afew parents immediately sensed the gravity of the situa-tion on hearing the diagnosis.I felt shaky . . . that something is wrong with mydaughter . . . the reaction . . . Lost . . . Lost; I thoughtwhat is going to happen? At that time my husbandwas very focused on putting her in a renownedschool. That dream was shattered for me.One mother related her distress when she realized theimplications of what having a child with ASD wouldmean for her family.When I came to know about Autism, it was shock tome, my husband totally went mad. I was so frus-trated that I felt like the three of us will go andcommit suicide.Sharing worries with the spouse was the predominantstrategy between parents. Extended family members,especially grandparents, helped parents manage sched-ules and were often the first line of support. A generalpractitioner described the difference it makes to a childwith disability when there are other family members inthe house.The presence of a grandparent makes a bigdifference. Because when the grandparents are notthere, the child may not get enough attention asboth parents may need to work.Several parents stated that they had experienced signifi-cant health problems. These ranged from physical painsto disturbed sleep. For one mother, this physical exhaus-tion reached an unmanageable point.Till he was 5 years I could not sleep in the night, Iused to get black circles around my eyes, since hewould run; not sitting in one place. I went throughso many difficulties. At times I felt I don’t want thischild.During the interview process, on an average of 7 yearsfrom diagnosis (range from 3 years to 21 years) mostparents continued to express an underlying deep-seatedworry for their child’s future. Withdrawing from life.  The intensity of their child’sneeds meant that the professional lives of parents wereaffected—the mother, as the prime carer, adapted heraspirations and often became homebound. With fatherstaking on the financial responsibility of the household,their working hours often increased, and one father relo-cated his work so as to supervise his son at home. Aresource room teacher described one mother’s increasingsocial isolation and described the decrease in personaltime for the mothers.This mother says from the time he is born shecannot go out, because all the time she has to carryhim, or he’ll scream and shout. She has cut off allher friendships. It is basically a burden on themother to take care of child. Since rarely thehusbands cooperate.Often parents dealt with the difficult situation by“locking the door ”  or closing themselves off from socialinteractions.Life has really changed for me. I used to enjoy goingout a lot before he was born; now I don’t reallysocialize much. I normally don’t go out with himand now I have to be with him even at night.However over time, as parents became more involvedwith special schools and other parents, with a gradualre-integration into community life. Some mothers foundrediscovering enjoyable activities a useful strategy. Onedescribed her initial 6 years of isolation which changedwhen she reentered the work place.I used to put my heart and soul into work but thenit was all the time for the Child, Child and Child. Iused to get tense at home; thinking ‘what willhappen to us? But now since I started working I ampart of the outside world also.Another mother adapted her work schedule.I left my job and started to practice at home. I didn’tleave my career. I used to work in the morning so Icould spend time with him in the afternoon.  Disruption of family relationships.  The time-intensive process of caring for a child with ASD influ-enced the quality of relationships with other familymembers, sometimes resulting in marital conflictsbetween spouses, increasing difficulties between parentsand other children, and tense relationships between theusually supportive extended family networks. Onemother in retrospect realized how she became consumedwith caring for her son with ASD to the point of riskingher marriage.It has not been easy at all. I was kind of single-mindedly obsessed with bringing him up. I thoughtmy marriage almost broke down because I neglectedmy husband.The couple then explored religious sustenance resultingin a strengthening of their relationship and a reassess-ment of their future.My husband used to be a social drinker and he usedto get into lot of fights because of his horrible INSAR 194 Divan et al./Impact of Autism on families in Goa, India
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