OBJECTIVE:
To assess how families perceive the positive and negative impacts of caring for a child with mental retardation.
METHODS:
The quantitative descriptive study was conducted from January to August 2007 and comprised 54 families attending a private day-care centre for children with special needs in Karachi, Pakistan. The Kansas Inventory of Parental Perceptions was used to assess mothers\u27 perceptions on the impact of caring for a child with mental retardation. Positive contributions, social comparisons with others, understanding of disability and perception of control were assessed. SPSS 16 was used for statistical analysis.
RESULTS:
Mothers reported positive contribution to family life as a result of caring for a child with mental retardation (Mean: 2.95 +/- 0.37). There was an acceptance of the situation and a trend towards upward favourable comparison with other families (Mean: 3.13 +/- 0.07).
CONCLUSIONS:
Contrary to earlier studies exploring the impact of caring for a child with disabilities having largely focused on negative contributions, the study highlights some positive contributions

Gavino, Irma

Lakhani, Arusa

Yousafzai, Aisha

English

eCommons@AKU

eCommons@AKUSchool of Nursing & Midwifery Faculty of Health SciencesDecember 2013The impact of caring for children with mentalretardation on families as perceived by mothers inKarachi, Pakistan.Arusa LakhaniAga Khan University, arusa.lakhani@aku.eduIrma GavinoUniversity of Brunei, DarussalamAisha YousafzaiAga Khan University, aisha.yousafzai@aku.eduFollow this and additional works at: http://ecommons.aku.edu/pakistan_fhs_sonPart of the Nursing Midwifery CommonsRecommended CitationLakhani, A., Gavino, I., Yousafzai, A. (2013). The impact of caring for children with mental retardation on families as perceived bymothers in Karachi, Pakistan.. JPMA. The Journal of the Pakistan Medical Association, 63(12), 1468-1471.Available at: http://ecommons.aku.edu/pakistan_fhs_son/122J Pak Med Assoc1468ORIGINAL ARTICLEThe impact of caring for children with mental retardation on families asperceived by mothers in Karachi, PakistanArusa Lakhani,1 Irma Gavino,2 Aisha Yousafzai3AbstractObjective: To assess how families perceive the positive and negative impacts of caring for a child with mentalretardation. Methods: The quantitative descriptive study was conducted from January to August 2007 and comprised 54families attending a private day-care centre for children with special needs in Karachi, Pakistan. The Kansas Inventoryof Parental Perceptions was used to assess mothers' perceptions on the impact of caring for a child with mentalretardation. Positive contributions, social comparisons with others, understanding of disability and perception ofcontrol were assessed. SPSS 16 was used for statistical analysis.Results: Mothers reported positive contribution to family life as a result of caring for a child with mental retardation(Mean: 2.95±0.37).  There was an acceptance of the situation and a trend towards upward favourable comparisonwith other families (Mean: 3.13±0.07). Conclusions: Contrary to earlier studies exploring the impact of caring for a child with disabilities having largelyfocused on negative contributions, the study highlights some positive contributions. Keywords: Mental retardation, Family life, Children, Pakistan, Positive contributions. (JPMA 63: 1468; 2013)IntroductionMany children living in low-income countries may be athigh risk of acquiring a developmental disability as aresult of inadequate deliveries and newborn carepractices, micronutrient deficiencies, infections,consanguinity and trauma.1,2 Studies on severe mentalretardation from low-income countries report aprevalence of higher than 5 per 1000, which is greaterthan figures reported for high-income countries.2 InPakistan, the reported prevalence of children with mentalretardation is estimated to be 19.1 per 1000 for severemental retardation to 65.3 per 1000 for mild retardation.3However, negligible attention has been paid towards thedevelopment of services to address the needs of thispopulation.4A number of studies assessing the needs of children withdisability and their families from middle and low-incomecountries consistently report the need for moreinformation.1 In an environment where services tosupport the development and education needs ofchildren with mental retardation are inadequate, familiesdevelop their own coping strategies. In Pakistan, thegreater care-giving responsibilities are with the mothers,5who report that they are often blamed for the child'sdisability by family and members of the community, andthat they receive little care-giving support.4,5 Parentalstress associated with caring for children with mentalretardation is high.4 In a qualitative study of motherscaring for children with disabilities in a low-incomecommunity in Karachi, it was reported that children withdisabilities made positive contributions to the lives oftheir mothers (e.g. greater decision-making power andfreedom of movement than peers), but the challengesthey faced were still considerable (e.g. no care-givingsupport, stigma).5In order to develop future models for family support, agreater understanding of both the negative and positivecontributions of caring for a child with mental retardationis needed. Families are often likely to report bothdifficulties with positive perceptions and instrumentswhich help professionals understand both experiencesmay be useful in developing strategies that are supportiveof families and encourage effective coping strategies.6,7 Ina study from Hong Kong, it was recognised that moresupport strategies need to be developed to enhance thepositive perceptions about the care-giving role of familiescaring for children with intellectual disability in order tobenefit the psychosocial well-being of children and theirmothers.8 However, there is a paucity of data on thepositive contributions of a child with mental retardationon family life from developing countries, includingPakistan.1School of Nursing, 3Department of Paediatrics and Child Health, Division ofWomen and Child Health, Aga Khan University, Karachi, Pakistan, 2Universityof Brunei, Darussalam.Correspondence: Arusa Lakhani. Email: arusa.lakhani@aku.eduVol. 63, No. 12, December 2013The impact of caring for children with mental retardation on families as perceived by mothers in Karachi, Pakistan 1469The aim of this exploratory study was to describe theimpact of caring for a child with mental retardation asperceived by mothers living in Karachi, Pakistan. Subjects and MethodsThe quantitative descriptive study was conducted fromJanuary to August 2007 and comprised 54 mohters ofchildren with mental retardation attending a private daycare centre for children with special needs in Karachi,Pakistan.Convenience sampling was utilised after 30% of thepopulation was calculated as the sample size.9 The totalpopulation was 170, thus 54 mothers were taken assubjects. Data was gathered over a period of 6 weeksduring which the researcher stayed at the school from0800 hours to 1800 hours daily, except weekends. Theinclusion criteria comprised mothers who had a child withmental retardation from any economic, social, religious orethnic group; the mentally retarded child could be a maleor a female of age above 6 years, and no restriction innumber of siblings and the age of the mother. Theexclusion criteria comprised fathers or any other memberof the family and mothers who were unable to express orshare their experiences which was taken as unwillingnessto participate in the study.In Pakistani context, usually mother is the sole care-giverto the child; therefore only mothers were included in thestudy. Information about the study was distributedthrough the children's daily school diary. Interestedmothers were able to notify the school and were thencontacted by a researcher to arrange an interview.Following discussion about the study, mothers whoagreed to participate signed a consent letter. A demographic questionnaire was used to collect basicinformation about the family and the participant (themother). Data on the impact of caring for a child withmental retardation was collected using the KansasInventory of Parental Perceptions (KIPP).10 The inventoryconsists of 98 items organised into 4 sub-scales, PositiveContribution, Social Comparison, Causal Attributions andMastery Control, on a 4-point agreement scale: 1 =strongly disagree; 2 = disagree; 3 = agree; and 4 = stronglyagree. The format and the response scales remained thesame as the original measure. The higher scores indicatethat the parent agrees more strongly with the items onthe sub-scales; so the higher scores are associated withgreater awareness of the perceptions, strongerperception or greater use of the perceptions.9 Thereported Cronbach's alpha coefficient for reliability andvalidity for each subscale is 0.56-0.86 and 0.30-0.74 forpositive contribution, 0.58-0.78 for social comparison,0.86-0.87 for causal attribution and 0.68-0.87 for mastery/control. The sub-scale scores were obtained by calculatingthe means for items on the sub-scale. The instrument wasalready tested for its reliability and validity in the westerncontext, but it was pilot-tested in the Pakistani context forits appropriateness. The pilot test on five mothers ofmentally retarded children was conducted in one of thecommunity schools for mentally retarded children.Mothers were able to understand and comprehend theinstrument and were able to respond to the questionsasked. Hence, the entire instrument was adopted with noamendments or changes.Since, to the best of our knowledge, KIPP had not beenused in a Pakistani population, the instrument wasreviewed by a panel of experts who were familiar with thesocio-cultural context and were bilingual in Urdu andEnglish in order to check for conceptual equivalence andclarity as well as consistency in translation. The inventory was administered in Urdu during face-to-face interviews in a private setting. The procedure tookbetween 40-60 minutes because mothers used this timeto share their concerns and issues as care-givers. Data was analysed using SPSS Version 16.0. Means andstandard deviations were calculated for the four sub-scales and the composite score for the KIPP. T-test forindependent sample, with unequal sample size, wascalculated to verify if the difference in the means of thegroup which were sub-divided into different categorieswere significant.All interviews were conducted after approval by theinstitutional ethics review committee, and dataconfidentiality was maintained.ResultsOf the 54 children, 29 (53%) were male and 25 (46%) werefemale. Besides, 29 (54%) children had mild-to-moderatemental retardation, and 25 (46%) had severe mentalretardation. The mean age of the children was 11.2±2.62years.Five (9%) mothers were between 20-30 years of age, 34(63%) were between 31-45 years, and 15 (28%) were morethan 46 years of age.  Eight (15%) had completed primaryschool; 7 (13%) middle school; 6 (11%) matriculation; 17(32%) intermediate; and 16 (29%) had a higher educationdegree. Besides, 20 (37%) of the mothers reported ahousehold income range of Rs10000-15000 per month(US$115-175); 5 (9%) less than Rs5000 per month (US$58); and 4 (7%) reported a monthly household incomegreater than Rs25000 (US$294).  The majority of motherswere housewives (n=47; 87%). In addition to a child withmental retardation, the majority had 1 (n=17; 32%) or 2(n=19; 35%) other children. Mean scores of each sub-scale of the KIPP were calculated(Table). The highest mean was for the PositiveContribution sub-scale (2.95±0.37), followed by SocialComparison (2.99±0.29), Mastery Control (2.32±0.71) andCausal Attribution (2.13±0.18).Mothers did perceive that caring for a child with mentalretardation had a positive effect on family life. In thePositive Contribution sub-scale, the higher scores wereobserved for learning through experience with specialproblems in life, happiness and fulfilment, strength andfamily closeness, understanding life's purpose, awarenessabout future issues and personal growth and maturity.When comparing their situation with others, similar meanscores were observed for downward comparison withothers (3.29±0.51) and an upward favourable comparison(3.13±0.07). In the Causal Attributions sub-scale, thehighest means were observed for perceiving that thedisability is associated with fate or chance (3.12±0.41) orthat there is a special/higher purpose (3.08±0.98).Mothers' perceptions of being able to influence outcomeswas part of the Mastery Control sub-scale, where personalsense of control was (2.26±0.40)perceived to be higherthan the professional sense of control (2.00±0.49).DiscussionThe present study showed, in agreement with otherstudies from Pakistan, that there was a perception ofacceptance of disability as a result of fate and a sense ofstigma and self blame.4,5 However, the study was also ableto report that caring for a child with mental retardationdoes make positive contributions to family life.11 Theperception of happiness and fulfilment provide furtherinsights into caring for a child with mental retardation in adeveloping country setting where protective factors areseldom reported. The sense of personnel growth reportedhere has also been shown in a previous qualitative studyamong mothers living in a low-income community inKarachi,5 which may be an opportunity for servicedevelopment such as peer-to-peer counselling, parentingprogrammes or awareness genration. In general, motherscompared themselves favourably with other parents whohad children with mental retardation. It is imperative torealise the importance of support within and outside thefamily, especially from ones who have a child with similarchallenges. It is only a parent of a disabled child who cangrasp the feelings, heartache, guilt, fear andresponsibilities that parents with a similar childexperience.12The positive perceptions, favourable social comparisonsand perception of control are not dimensions of care-giving for children with disabilities that have beenreported in the Pakistan context where the focus has beenlargely to examine the negative contributions. This is notto suggest that families do not experience stress or facesubstantial challenges in seeking out basic informationand services for their children, but to acknowledge thatgoing hand in hand are positive experiences which maycontribute to building resilience in families. In developingfuture models for support, strategies where families areencouraged to share a complete experience may facilitatein identifying positive coping strategies.8In Karachi, there are only a few special education services,while developmental and rehabilitation services arescattered and often difficult to access for many families.However, with growing awareness and media attention,parent groups through clinical and education centres aregrowing and opportunities to develop these should becapitalised upon. More research exploring family copingstrategies are needed in developing countries where thelevel of external support is likely to remain limited in thenear future, and where low-cost support interventions atJ Pak Med Assoc1470 L. Arusa, G. Irma, Y. AishaTable: Means and standard deviations of the Kansas Inventory of Parental PerceptionsSubscales (n=54).Components & subscales Subscale means (X) SDPositive contribution 2.95 0.37Learning through experience with special problems in life 3.39 0.19Happiness and fulfilment 3.23 0.21Strength and family closeness 3.17 0.26Understanding life's purpose 3.22 0.75Awareness about future issues 3.09 0.10Personal growth and maturity 3.00 0.30Expanded social network 2.43 0.55Career/ Job growth 2.56 0.22Pride and cooperation 2.44 0.23Social Comparison 2.99 0.29Similar comparison 2.91 0.09 Downward comparison 3.29 0.51Upward favourable comparison 3.13 0.07Upward unfavourable comparison 2.63 0.78Causal attribution 2.32 0.71Fate/chance 3.12 0.41Special purpose 3.08 0.98Physiologic causes 1.74 0.19Professional blame 1.81 0.25Self-blame 1.86 0.21Mastery/control 2.13 0.18Personal control 2.26 0.40Professional control 2.00 0.49family and community levels, such as peer counselling,may be a feasible way forward. ConclusionBy providing better access to parents providing care fordisabled children, the potential of utilising the positiveexperiences and perceptions of families dealing with thechallenge can be chanellised for individual and socialbetterment.AcknowledgementsWe are grateful to Mr. Aslam Farid for statistical assistance,and the Aga Khan University Research Council for fundingthe study. Besides, we are thankful to all the participatingmothers.References1. Maulik PK, Darmstadt GL. Childhood disability in low- andmiddle-income countries: overview of screening, prevention,services, legislation, and epidemiology. Pediatrics 2007;120(Suppl 1): S1-S55.2. Durkin M. The epidemiology of developmental disabilities inlow income countries. Ment Retard Dev Disabil Res Rev. 2002;8: 206-11.3. Durkin MS, Hasan ZM, Hasan KZ. Prevalence and correlates ofmental retardation among children in Karachi, Pakistan. Am JEpidemiol. 1998; 147: 281-8.  4. Mirza I, Tareen A, Davidson LL, Rahman A. Communitymanagement of intellectual disabilities in Pakistan: a mixedmethods study. J Intellect Disabil Res. 2009; 53: 559-70.5. Yousufzai AK, Farrukh Z, Khan K. A source of strength andempowerment? An exploration of the influence of disabledchildren on the lives of their mothers in Karachi, Pakistan. DisabilRehabil 2011; 33: 989-98.6. Hastings RP, Beck A, Hill C. Positive contributions made by childrenwith an intellectual disability in the family: mothers' and fathers'perceptions. J Intellect Disabil 2005; 9: 155-65. 7. Gupta A, Singhal N. Positive perception in parents of children withdisabilities. Journal of Asia Pacific Disability Rehabilitation 2004;15: 22-35. 8. Mak WWS, Ho GSM. Caregiving perceptions of Chinese mothers ofchildren with intellectual disability in Hong Kong.  J Appl ResIntellect Disabil 2007; 20: 145-56. 9. Behr SK, Murphy DL, Summers JA.  User's manual:  KansasInventory of Parental Perceptions - KIPP.  Lawrence, Kansas: BeachCenter on Disabilities, University of Kansas; 1992.10. Azar M, Badr LK. The adaptation of mothers of children withintellectual disability in Lebanon. J Transcult Nurs 2006; 17: 375-80. 11. Johnson BS. Mothers' perceptions of parenting children withdisabilities. MCN Am J Matern Child Nurs 2000; 25: 127-32.12. Japan International Cooperation Agency Planning and EvaluationDepartment. Country Profile on Disability. Islamic Republic OfPakistan, March 2002. (Online) (Cited 2010 August). Available fromURL: http://gwweb.jica.go.jp/km/FSubject0601.nsf/3b8a2d403517ae4549256f2d002e1dcc/54a619bb76fd92034925727d0008246b/$FILE/Pakistan(2002).pdf.13. Population Census Organization, Government of Pakistan.Demographic Indicators - 1998 Census. (Online) (Cited 2007 July).Available from URL: http://www.statpak.gov.pk/depts/pco/statistics/statistics.html.14. Horne S, Hastings R. Positive perception held by support staff incommunity mental retardation services. Am J Ment Retard 2004;109: 53-62.15. Mubbashar MH, Saeed K. Development of mental health servicesin Pakistan. East Mediterr Health J 2001; 7: 392-6. 16. World Health Organization. Current and Future Long-Term CareNeeds. An Analysis Based on 1999 WHO Study: The Global Burden ofDisease and the International Classification of Functioning, Disabilityand Health. The Cross-Cluster Initiative and Long-Term Care. Non-Communicable Diseases and Mental Health Cluster. World HealthOrganization; 2002. (Online) (Cited 2007 August). Available fromURL: http://whqlibdoc.who.int/hq/2002/WHO_NMH_CCL_02.2.pdf.17. Towards a Common Language for Functioning, Disability andHealth ICF; 2002. (Online) (Cited 2007 July). Available from URL:http://www.who.int/classifications/icf/site/.18. Yaqoob M, Bashir A, Zaman S, Feregren H, Dobeln UV, GustavsonKH. Mild intellectual disability in children in Lahore, Pakistan:aetiology and risk factors. J Intellect Disabil Res 2004; 48(Pt 7):663-71.Vol. 63, No. 12, December 2013The impact of caring for children with mental retardation on families as perceived by mothers in Karachi, Pakistan 1471

The impact of caring for children with mental retardation on families as perceived by mothers in Karachi, Pakistan.

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The impact of caring for children with mental retardation on families as perceived by mothers in Karachi, Pakistan.

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