DOI: http://dx.doi.org/10.18203/2320-6012.ijrms20203043

Quality of life, perceived stress and caregiver burden in mothers of children with childhood psychiatric disorders in Kerala, India

Karuna Sandra Thomas, Chitra Venkateswaran, Ashwin Varghese Alexander

Abstract


Background: Common childhood psychiatric problems like attention deficit hyperkinetic disorder (ADHD), Pervasive developmental disorder (PDD) and learning disability (LD) often co-exists with each other and form a constellation of behavioural manifestations that require extra attention from the caregivers. Having a differentially-abled child is challenging and most parents have to learn to restructure their lives around that of the child. There is a difference in the attitudes of both the parents as far as parenting a disabled child is concerned. Mothers often shoulder the primary caregiving role however the psychological costs borne by women go unrecognized. The study aims to assess the care giver burden (BOC) and perceived stress (PS) and quality of life (QOL) in mothers of children with ADHD, PDD and LD.

Methods: It was a cross-sectional study with 336 child mother pairs. The mothers were asked to rate their burden and stress symptoms on the perceived stress scale and Burden of care scale. The mothers were also asked to rate their quality of life on the quality of life scale.

Results: The mean PS score was highest in the PDD group. The mean BOC was lowest in the LD group. The QOL score was highest in the LD group.  There is statistically significant difference in the PS, BOC and QOL scores among the three groups.

Conclusions: There is a hidden lacuna of psychological stress in mothers of children with common psychiatric problems. The study also establishes that these mothers have poorer quality of life. It is necessary to address these psychological issues of the mother at every visit and equip them with coping strategies so that they can look after both themselves and their special needs child.


Keywords


Attention deficit hyperkinetic disorder, Caregiver burden, Learning disability, Maternal stress, Pervasive developmental disorder, Perceived stress, Quality of life

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References


August GJ, Garfinkel BD. Comorbidity of ADHD and reading disability among clinic-referred children. J Abnormal Child Psychol. 1990;18(1):29-45.

Chantiluke K, Christakou A, Murphy CM, Giampietro V, Daly EM, Ecker C, et al. MRC AIMS consortium. Disorder-specific functional abnormalities during temporal discounting in youth with attention deficit hyperactivity disorder (ADHD), autism and comorbid ADHD and autism. Psych Res Neuroimag. 2014;223(2):113-20.

Pahantasingh S, Jaykrishnan K, Pradhan J. Attitude of parents towards their intellectually disabled children and its associated psychosocial impact on them. Int J Health Sci Res. 2018;8(2):134-7.

Gupta RK, Kaur H. Stress among parents of children with intellectual disability. Asia Paci Disab Rehabilitat J. 2010;21(2):118-26.

Johnston C, Mash EJ. Families of children with attention-deficit/hyperactivity disorder: review and recommendations for future research. Clin Child Family Psychol Rev. 2001;4(3):183-207.

Harpin VA. The effect of ADHD on the life of an individual, their family, and community from preschool to adult life. Archives of disease in childhood. 2005;90(suppl 1):i2-7.

Kersh J, Hedvat TT, Hauser‐Cram P, Warfield ME. The contribution of marital quality to the well‐being of parents of children with developmental disabilities. J Intellect Disab Res. 2006;50(12):883-93.

Brobst JB, Clopton JR, Hendrick SS. Parenting children with autism spectrum disorders: The couple's relationship. Focus Autism Other Develop Disabil. 2009;24(1):38-49.

Foley M. A comparison of family adversity and family dysfunction in families of children with attention deficit hyperactivity disorder (ADHD) and families of children without ADHD. J Special Pediatr Nurs. 2011;16(1):39-49.

Leslie LA, Anderson EA, Branson MP. Responsibility for children: The role of gender and employment. J Family Issu. 1991;12(2):197-210.

Bristol MM, Gallagher JJ, Schopler E. Mothers and fathers of young developmentally disabled and nondisabled boys: adaptation and spousal support. Develop Psychol. 1988;24(3):441.

Lifford KJ, Harold GT, Thapar A. Parent-child hostility and child ADHD symptoms: a genetically sensitive and longitudinal analysis. J Child Psychol Psychiat. 2009;50(12):1468-76.

Peters K, Jackson D. Mothers’ experiences of parenting a child with attention deficit hyperactivity disorder. J Adv Nurs. 2009;65(1):62-71.

Lench HC, Levine LJ, Whalen CK. Exasperating or exceptional? Parents’ interpretations of their child’s ADHD behavior. J Attent Disord. 2013;17(2):141-51.

Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontol. 1980;20:649-55.

Yap P. Validity and reliability of the Zarit Burden Interview in assessing caregiving burden. Ann Acad Med Singap. 2010;39:758-63.

Lee EH. Review of the psychometric evidence of the perceived stress scale. Asian Nurs Res. 2012;6(4):121-7.

Ohaeri JU, Awadalla AW. The reliability and validity of the short version of the WHO Quality of Life Instrument in an Arab general population. Annals Saudi Med. 2009;29(2):98-104.

Menon B, Cherkil S, Aswathy S, Unnikrishnan AG, Rajani G. The process and challenges in the translation of World Health Organization Quality of Life (WHOQOL-BREF) to a regional language; Malayalam. Indian J Psychol Med. 2012;34(2):149.

Davis NO, Carter AS. Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: associations with child characteristics. J Autism Develop Disord. 2008;38(7):1278.

Oelofsen N, Richardson P. Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability. J Intellectual Develop Disabil. 2006;31(1):1-2.

Chronis AM, Lahey BB, Pelham WE, Williams SH, Baumann BL, Kipp H, et al. Maternal depression and early positive parenting predict future conduct problems in young children with attention-deficit/hyperactivity disorder. Develop Psychol. 2007;43(1):70.

Gerdes AC, Hoza B, Arnold LE, Pelham WE, Swanson JM, Wigal T, et al. Maternal depressive symptomatology and parenting behavior: Exploration of possible mediators. J Abnormal Child Psychol. 2007;35(5):705-14.

Cadman T, Eklund H, Howley D, Hayward H, Clarke H, Findon J, et al. Caregiver burden as people with autism spectrum disorder and attention-deficit/hyperactivity disorder transition into adolescence and adulthood in the United Kingdom. J Am Academy Child Adolescent Psych. 2012;51(9):879-88.

Fridman M, Banaschewski T, Sikirica V, Quintero J, Erder MH, Chen KS. Factors associated with caregiver burden among pharmacotherapy-treated children/adolescents with ADHD in the caregiver perspective on pediatric ADHD survey in Europe. Neuropsy Dis Treat. 2017;13:373.

Roach MA, Orsmond GI, Barratt MS. Mothers and fathers of children with Down syndrome: parental stress and involvement in childcare. Am J Mental Retardation. 1999;104(5):422-36.

Ambikile JS, Outwater A. Challenges of caring for children with mental disorders: experiences and views of caregivers attending the outpatient clinic at Muhimbili National Hospital, Dar es Salaam-Tanzania. Child Adoles Psych Ment Health. 2012;6(1):198.

Khanna R, Madhavan SS, Smith MJ, Patrick JH, Tworek C, Becker-Cottrill B. Assessment of health-related quality of life among primary caregivers of children with autism spectrum disorders. J Autism Develop Disord. 2011;41(9):1214-27.

Mugno D, Ruta L, D'Arrigo VG, Mazzone L. Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health Quality Life Outcomes. 2007;5(1):22.

Xiang YT, Luk ES, Lai KY. Quality of life in parents of children with attention-deficit–hyperactivity disorder in Hong Kong. Aust New Zealand J Psych. 2009;43(8):731-8.