Occupational Therapy Intervention to combat stress level of mothers of children with Autism

Transcription

1 The Indan Journal of Occupatonal Therapy : Vol. 46 : No. 2 () Occupatonal Therapy Interventon to combat stress level of mothers of chldren wth Autsm Author : Ntesh Kumar Shrvastav*, MOT Key Words: Occupatonal therapy, Sensory based nterventon, Parent stress ndex, Goal Attanment scale. * Occupatonal Therapst Insttuton: Occupatonal Therapy Servces, Department of Physcal Medcne and Rehabltaton, Kng George's Medcal Unversty, Lucknow Perod Of Study : Aprl October 2013 Correspondence : Dr. Ntesh Kumar Shrvastav 2/302, Vvek Khand, Gomt Nagar, Lucknow. UP Phone No. : E- Mal : ntesh.mot.2008@gmal.com Paper was presented n 51st Annual Conference of AIOTA at Bhubaneswar n Abstract Ams and Objectves- The parents of Chldren wth Autsm have hgher Stress level. The purpose of ths study was to determne the effects of Occupatonal Therapy wth Sensory Based Interventon and Parental Educaton to overcome stress level of mothers of the chldren wth Autsm. Subjects- 25 chldren dagnosed wth ASD of age group 2.5 to 6 years along wth ther mothers who attaned Occupatonal Therapy Servces, DPMR, KGMU, Lucknow over a perod of 6 months (From Aprl 2013 to October 2013). Methods- A pre test post test sngle group desgn was used. All the mothers were ntervewed and ther stress level was measured by the short form of the parentng stress ndex. In addton to ths, the Goal Attanment Scalng was used n conjugaton wth mothers to set a few functonal goals for the chldren. Result- There was sgnfcant mprovement n parent chld dysfunctonal nteracton, dffcult chld and total stress level of mother of autstc chldren. Concluson- Occupatonal Therapy Interventon s effectve n reducton of chld stress level of mothers wth autstc chldren. Introducton The Amercan Psychatrc Assocaton s Dagnostc and Statstcal Manual of Mental Dsorders, Ffth Edton, Text Revson (DSM-V-TR), defnes ASD as a category that ncludes autstc dsorder (autsm), Asperger s dsorder, chldhood dsntegratve dsorder, and pervasve developmental dsorder not otherwse specfed (APA, 2012) 1. The core defcts assocated wth an ASD are mparment n socal nteracton and communcaton, as well as the presence of unusual behavors. Accordng to statstcs by the Centers for Dsease Control and Preventon (CDC) 2, one n every 88 chldren today s born wth autsm spectrum dsorder (ASD) n Unted States aganst a rato of one n 110 few years back. The prevalence rate of autsm n Inda s 1 n 250 and currently 10 mllon people are sufferng n Inda. (The tmes of Inda, Ahmedabad, 2nd Aprl 2013). Autsm s assocated wth burden and stress for parents 3. Prevous research has shown that havng a chld wth a dsablty such as ASD presents a unque set of challenges that mpacts the entre famly unt and ndvdual famly members health, well-beng, and experences across the lfe span 4,. These stressors nclude challenges navgatng the myrad of educatonal, medcal, and behavoral servces; fnancal hardshps related to the cost of care; and emotonal aspects of havng a chld wth a dsablty 5. There are three major groups of factors that contrbute to elevated stress n parents of chldren wth autsm: (1) chld characterstcs (2) lack of adequate professonal support and unsatsfactory relatonshps between parents and (3) socal atttudes towards ndvduals wth autsm. Parental stress s assocated wth the chld s mpared adaptve functonng 6, regulatory dffcultes 7, atypcal behavor resultng from sensory problems 8, and the dsturbances n the chld s crcadan rhythm. Am of the study The study s desgned to examne the occupatonal therapy nterventon (Sensory based nterventon and parental educaton) on chldren behavor and ts mpact on the stress level of mothers wth autsm. IJOT : Vol. 46 : No. 2 55

2 Lterature revew There were a few studes whch focused on chldren functonal performance and stress level of the parents. In a study (Psula, 2007) 9, mothers of chldren wth autsm showed hgher stress levels than mothers of chldren wth Down syndrome. The largest dfferences between groups were found for overprotecton / dependency of the chld and chld s dffcult personalty characterstcs. Mothers of chldren wth autsm were also more concerned about ther chld s dependence on external care. The Early Brd Program (by Shelds, 2001) 10 : In a plot study of the early Brd Program, behavor management tranng and ndvdual early nterventon for the chld wth autsm was admnstered. Parents reported decreased stress after 3- and 6- month follow-up. Koegel et al. (1992) 11 descrbed a farly stable pattern of dffcultes experenced by mothers of chldren wth autsm, ndependent from the chld s age, ntellectual development, geographcal regon or cultural background. The core stress was assocated wth the chld s future, hs/her cogntve development, dependence on care and socal excluson. Bouma and Schwetzer (1990) 12, n ther comparson of mothers of chldren wth autsm, chldren wth a physcal dsablty and healthy chldren, found that mothers of chldren wth autsm experenced more stran. It was due to problems related to the chld s cogntve development, the need for constant supervson, and the perspectve of ther chld s contnued dependence on care. Methodology and materals Study desgn - One-Group Pretest-Posttest Desgn. Subjects and settngs 25 chldren dagnosed wth ASD along wth ther mothers were selected for the study from Occupatonal Therapy, DPMR, K.G s Medcal Unversty, Lucknow, over a perod of 6 months. Incluson crtera- Chldren dagnosed wth ASD Age 2-6 years Both sexes. Not attendng other rehabltaton centre. Excluson Crtera Chldren wth other physcal dsabltes Assocated wth mental retardaton, sezure Severe sensory loss- vsual or Audtory Instrumentaton Parentng Stress Index - Short Form. Parentng stress was measured usng the PSI-SF (Abdn, 1995) 13. Ths self-report measure has been used n numerous studes wth famles of chldren wth psychatrc and developmental dsorders to measure the level of parental stress n the parent-chld dyad. PSI-SF contans 36 statements three subscales: parental dstress (PD), parent-chld dysfunctonal nteracton (P-CDI), and dffculty of chld (DC). Goal Attanment Scale- Goal Attanment Scalng (GAS) s a method of outcome measurement that has been n use n a varety of health settngs for many years (McLaren & Rodger, 2003) 14. Malloux, May- Benson, Summers, et al. (2007) 15 found GAS to be an effectve method for measurng progress n chldren wth sensory ntegraton dsorders, and chldren wth ASD often have smlar sensory ssues that affect ther functon. Procedure After recevng approval from the Departmental ethcal commttee, DPMR, Kng George Medcal Unversty, Lucknow, wrtten consent was obtaned from each subject s mother. Twenty fve chldren along wth ther mothers met the ncluson crtera. Mothers were explaned the purpose and detals of study. All the mothers of autstc chldren were ntervewed and ther stress level was measured by Short form of PSI. Furthermore, few functonal goals were set n conjugaton wth chld s mothers and functonal goal was measured by Goal Attanment scale. For the purpose of ths study three common goals were decded for all the chldren. (Appendx-1) 1. Lower lmb dressng. 2. Sttng duraton. 3. Sleepng Duraton. Then the all chld receved Occupatonal therapy twce a week for 6 weeks for 30 mnutes by therapst and also sensory based nterventon by the mothers. The parent educaton program for mothers was conducted n ndvdual format. Mothers of the chldren were encouraged to attan the therapy sessons followed by 30 mnutes educaton program. The followng steps were ncluded n parent educaton program. 1. Educaton program began wth nformaton regardng the mothers understandng the nature of chld sensory motor preferences and defct by wrtten nstructons, and ther chld current level of functonal development. 2. Mothers are taught to assess the chld problems. 3. A lst of sensory based actvtes generated accordng to the chld preference and ths taught to the mothers by modelng done by therapst and also dfferent strateges to structure the env ronment t o adapt and compensate the problem.(appendx ) 4. Observaton by the therapst, whle mothers performng the actvty and also by vdeo provded by mother. After 6 weeks of nterventon, chld functonal goal and mothers stress level measured by Goal Attanment scale and short Form of Parental stress Index. Data Analyss Three potental subjects drop out the therapy because of some famly problems. Statstcal calculatons were performed wth IJOT : Vol. 46 : No. 2 56

3 statstcal package for socal scence (SPSS verson 16). Statstcal tests were carred wth the level of sgnfcance set at Pd Wlcoxons sgned ranks test were used to analyze the changes n short form of PSI. Goal Attanment Scores are calculated by applyng a formula: T = 50 + (1 r ) 10 Where: w = the weght assgned to the th goal. x = the numercal value acheved ( between 2 and + 2) r= the expected correlaton of the goal scales Result w w 2 + x r w 2 Table- I Descrptve characterstcs of the chld and mother The Wlcoxon sgned ranks test was used to analyze the dfferences of the subscales. The result s presented n table-ii. Table- II Comparson of subscales short form of Parental Stress Index Z score P value Parental dstress Parent chld nteracton Dffcult chld Sgnfcance at p< 0.05 Table 2 shows the comparson wth n the group. In the parental dstress p>0.05, whch s more than the preset α value (0.05), whle n Parent chld dysfunctonal nteracton and Dffcult chld p<.05. So both these exhbted statstcally sgnfcant mprovement. The mean has ncreased n all the three subscales after nterventon, as t s shown n Fgure-2. Fgure-2 Comparson of dfferent subscales of short form of PSI Table 1 shows the descrptve characterstcs of the subjects. Total number of chld was 22 of mean age 3.85±1.09 years and mean age of mothers was 33.92±2.29 years. After therapy, 14 chldren had a level of goal attanment of 0 or hgher and 8 chldren had levels of goal attanment of -1 or -2 n lower lmb dressng goal. In 2 nd and 3 rd goal 19 and 20 chldren acheved 0 or hgher (Fgure 1). The mean GAS T score of 53.73± , Baselne was was close to the expected outcome GAS T score of 50. Fgure-1 GAS Goal scorng for functonal goals Agan the Wlcoxon sgned ranks test was used to analyze the dfference n total stress. The result s presented n table-iii. Table- III Comparson of Total Stress wthn the group Z score P value Total Stress Sgnfcance at p< 0.05 Table III shows the comparson wth n the group. p<0.05, hence t s sgnfcant. The changes n mean score were shown n Fgure-3. IJOT : Vol. 46 : No. 2 57

4 Dscusson Fgure-3 Comparson of Total Stress The results of ths study ndcated that parent tranng yelded benefts beyond changes n stress of the mothers and chld behavor. Mothers who had partcpated n the programs reported less parentng stress followng 6 weeks of nterventon. Most of the chldren scored 0 and +1 n Goal attanment scale. Ths s manly because of the sensory based actvtes gven by the mother regularly at home. Ths s supported by a study done by Escalana et al, (2001) 16, where they reported that the sensory based nterventons can decrease maladaptve behavor, reduce hyperactvty, nhbt self stmulaton and stereotypc movement, and mprove attenton and focus. In a smlar study, Escalona et al. (2001) 16 com pared chldren wth ASD who receved massage admnstered by ther parents every nght for a month to a comparson group whose parents read to them every nght. The chldren who receved massage demonstrated reduced hyperactvty, decreased mpulsvty and stereotypcal behavors, and mproved on-task behavors. The researchers attrbuted the postve fndngs to mproved sleep after massage. Parent educaton s typcally a component of occupatonal therapy nterventon. Most parent educaton programs are desgned to meet one of two goals: (1) to mprove ther chld s performance or (2) to manage ther chld s behavor and decrease maladaptve behavors. In ths study we focused on both performance and behavor of the chld by targetng 3 common goals. One concept underlyng the effcacy of parent tranng s that parents are wth ther chldren for a large porton of the day and can create a con sstent home envronment for learnng. In addton, parents often desre to be extensvely nvolved n ther chldren s nterventons. Sorfonoff, Lesle, & Brown, (2004) 17, reported n ther study that parent educaton about autsm and behavor management can mprove the parent s confdence and self-esteem and mprove the chld s behavor. There were sgnfcant mprovement n parent chld dysfunctonal nteracton and dffcult chld domans of short form of PSI. Ths may reflect therapy orentaton whch was focused specfcally on parent educaton and targeted chld functonal goal. Reduced stress related to chld characterstcs was assocated wth mothers s percepton of mproved chld behavor as measured by dffcult chld doman of short form of PSI. Moreover, mothers reported a broader range of chld behavor that was mproved by nterventon that was the reason to sgnfcant mprovement n total stress level of mother. Smlar result was found Sofronoff and Farbotko (2002) 18 evaluated the effectveness of parent management tranng on self-effcacy n parents wth chldren wth Asperger s dsorder usng nonrandomzed group comparson. Self effcacy was mproved n the parents and the chldren s behavor changed mmedately after nterven ton, but that change was not mantaned at the 3-month follow-up. The result of ths study s also supported by a study done by Jocelyn et al, (1998) 19, where they reported greater gans n language abltes, sgnfcant ncreased n caregvers knowledge about autsm, greater percepton of control on the part of mothers, and greater parent satsfacton. In another study Dggle et al, (2003) 20, concluded that parent medated nterventon s slghtly more effectve than communty day care but t s not as effectve as ntensve home based treatment. There was non sgnfcant result n parent dstress doman of short form of parental stress ndex. Ths s manly because of the short duraton of therapy and lack of follow up. Concluson The purpose of ths study was to examne the occupatonal therapy nterventon to combat the stress of the mother of the autstc chldren. Severe stress experenced by mother of chldren wth autsm has profound consequences for ther health, wellbeng, nteractons wth the chld and famly lfe. From ths study, t can be concluded that the occupatonal therapy nterventon.e sensory based nterventon and parental educaton s effectve n reducton of chld behavor, parent chld dysfunctonal nteracton and total stress of the mother of autstc chldren. Lmtaton Small sample sze. Short duraton. Lack of control group. Lack of follow up. Acknowledgements I wsh to express my sncere thanks & deepest grattude to Prof. R. N. Srvastava, H.O.D, DPMR, KGMU, for gvng me permsson to conduct ths study. I would also lke to thank Dr. Anl K. Srvastava, Former Head, Occpatonal Therapy Servces, DPMR, K GMU, Lucknow and my fr end Dr. Harshvardhan, Paedatrc Occupatonal Therapst, Wellngton, Newzeland to help durng the course of the study. References 1. Amercan Psychatrc Assocaton. DSM-5 Proposed crtera for autsm spectrum dsorder desgned to provde more accurate dagnoss and treatment.(2012, January) Retreved from ProposedRevson.aspx?rd=94# IJOT : Vol. 46 : No. 2 58

5 2. Centers for Dsease Control and Preventon. Prevalence of autsm spectrum dsorders autsm and developmental dsabltes montorng network, among multple areas of the Unted States Executve summares. Communty Report from the Autsm and Developmental Dsabltes Montorng (ADDM) Network Howln P, Goode S, Hutton J, Rutter M.Adult outcome for chldren wth autsm. J Chld Psychol Psychatry 2004; 45: Patterson, J.M. Weavng gold out of straw: Meanng-makng n famles who have chldren wth chronc llnesses. In W.M. Pnsof & J.L. Lebow (Eds.), Famly Psychology: The Art of the Scence. New York, NY: Oxford Unversty Press, 2005: Plant, K. M., & Sanders, M. R. Predctors of care-gver stress n famles of preschool-aged chldren wth developmental dsabltes. Journal of Intellectual Dsablty Research 2007; 51(2): Ftzgerald, M., Brkbeck, G., Matthews, P. Maternal burden n famles wth chldren wth autstc spectrum dsorder. The Irsh Journal of Psychology 2002; 33:1 2, Tomank, S., Harrs, G. E., Hawkns, J. The relatonshp between behavors exhbted by chldren wth autsm and maternal stress. Journal of Intellectual & Developmental Dsablty 2004; 29: 1: Ben-Sasson, A., Cermak, S. A., Orsmond, G. I., Tager-Flusberg, H., Carter, A. S., Kadlec, M.B., Dunn, W. Extreme sensory modulaton behavors n toddlers wth autsm spectrum dsorders. The Amercan Journal of Occupatonal Therapy 2007; 61:5: Psula, E. A comparatve study of stress profles n mothers of chldren wth autsm and those of chldren wth Down s syndrome. Journal of Appled Research n Intellectual Dsabltes 2007; 20: 3: Shelds J. The NAS EarlyBrd Programme: partnershp wth parents n early nterventon. Natonal Autstc Socety. Autsm 2001; 5: Koegel R. L., Schrebman L., Loos L. M., Drlch-Wlhelm H., Dunlap G., Robbns F. R., Plens A. J. Consstent stress profles n mothers of chldren wth autsm. Journal of Autsm and Developmental dsorders 1992; 22: 2: Bouma, R., Schwetzer, R. (1990). The mpact of chronc chldhood llness on famly stress: A comparatve study between autsm and cystc fbross. Journal of Clncal Psychology1990; 46: 6: Abdn, R. R. Parentng stress ndex manual (3rd ed.). Odessa, FL: Psychologcal Assessment Resources McLaren, C. & Rodger, S. Goal attanment scalng: Clncal mplcatons for paedatrc practce. Australan Occupatonal Therapy Journal 2003; 50: Malloux, Z., May-Benson, T., Summers, C., Mller, L., Brett-Green, B., Burke, J., et al. Goal attanment scalng as a measure of meanngful outcomes for chldren wth sensory ntegraton dsorders. Amercan Journal of Occupatonal Therapy 2007; 61: Escalona, A., Feld, T., Snger-Strunck, R., Cullen C., & Hartshorn, K. Bref report: Improvements n the behavor of chldrenwth autsm followng massage therapy. Journal of Autsmand Developmental Dsorders 2001; 31: Sofronoff, K., Lesle, A., & Brown, W. Parent management tranng and Asperger syndrome. Autsm 2004; 8: Sofronoff, K., & Farbotko, M. The effectveness of parent management tranng to ncrease self-effcacy n parents of chldren wth Asperger syndrome. Autsm 2002; 6: Jocelyn LJ, Casro OG, Beatte D, Bow J, Knesz J. Treatment of chldren wth autsm: A randomzed controlled tral to evaluate a caregverbased nterventon program n communty day-care centers. Journal of Developmental & Behavoral Pedatrcs 1998; 19(5): Dggle, T., McConache, H. R., & Randle, V. R. L. Parent medated early nterventon for young chldren wth autsm spectrum dsorder. Cochrane Database of Systematc Revews 2003; Issue 1: Art. No.: CD DOI: / CD IJOT : Vol. 46 : No. 2 59

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