ASSOCIATION OF SOCIO-DEMOGRAPHIC, CLINICAL AND FEEDING CHARACTERISTICS WITH QUALITY OF LIFE AMONG CAREGIVERS OF DISABLED CHILDREN IN TERENGGANU, MALAYSIA
DOI:
https://doi.org/10.37268/mjphm/vol.23/no.1/art.1009Keywords:
quality of life (QoL), special needs children, disabled children, feeding issues, WHOQOL-BREFAbstract
Children with disabilities are dependent on caregivers. With various clinical and feeding issues with susceptibility to malnutrition, more strength, motivation and attention are required in their parenthood journey. Such special challenges may disrupt the life of the caregivers which can consequently affect their overall quality of life (QOL). This paper evaluates the association between sociodemographic factors, child’s clinical and feeding characteristics with the caregivers’ QOL. A total of 174 caregivers were involved in this cross-sectional study which was conducted in 46 community-based rehabilitation centres (CBR) across Terengganu state. The validated Malay Version World Health Organization Quality of Life-BREF (WHOQOL-BREF) questionnaire was used to assess the QOL based on four principle domains. General linear regression was applied to analyse the association between QOL impact score and study factors. The lowest QOL median score obtained was for environmental support domain 64.61 (12.26) followed by physical health domain 65.04 (12.72), psychological wellbeing domain 68.98 (13.01) and social relationship domain 75.15 (14.82). Caregivers with lower income, having children with other diseases despite current disability, experience with child seizure’s episodes and child unable to tolerate family meals had significantly lowered the caregiver’s QOL score. Both caregivers and children’s characteristics contributed to the negatively affected QOL score that consequently will contribute to the increased in the prevalence of malnutrition among disabled children.
References
Gomez IN, Gomez MG. Quality of life of parents of Filipino children with special needs. 20th Asian Conf Intellect Disabil. 2005;71(2):390–8.
World Health Organization. WORLD REPORT ON DISABILITY WHO Library Cataloguing-in-Publication Data. 2011; Available from: www.who.int/about/licensing/copyright_form/en/index.html
Thompson S, Saeedi P, Petersohn I, Salpea P, Malanda B, Karuranga S, et al. Disability prevalence and trends. Diabetes Res Clin Pract [Internet]. 2017;157(August):107843. Available from: https://doi.org/10.1016/j.diabres.2019.107843%0Ahttp://opendocs.ids.ac.uk/
opendocs/handle/123456789/13237
Amar HSS. Meeting the needs of children with disability in Malaysia. Med J Malaysia. 2008;63(1):1–3.
Dahan-Oliel N, Shikako-Thomas K, Majnemer A. Quality of life and leisure participation in children with neurodevelopmental disabilities: A thematic analysis of the literature. Qual Life Res. 2012;21(3):427–39.
Malhotra S, Khan W, Bhatia MS. Quality of Life of Parents having Children with Developmental Disabilities. Delhi Psychiatry J. 2012;
Guillamón N, Nieto R, Pousada M, Redolar D, Muñoz E, Hernández E, et al. Quality of life and mental health among parents of children with cerebral palsy: The influence of self-efficacy and coping strategies. J Clin Nurs. 2013;22(11–12):1579–90.
Polack S, Adams M, O’banion D, Baltussen M, Asante S, Kerac M, et al. Children with cerebral palsy in Ghana: malnutrition, feeding challenges, and caregiver quality of life. Dev Med Child Neurol. 2018;60(9):914–21.
Yamada A, Kato M, Suzuki M, Suzuki M, Watanabe N, Akechi T, et al. Quality of life of parents raising children with pervasive developmental disorders. BMC Psychiatry. 2012;12.
Lee J. Maternal stress, well-being, and impaired sleep in mothers of children with developmental disabilities: A literature review. Res Dev Disabil [Internet]. 2013;34(11):4255–73. Available from: http://dx.doi.org/10.1016/j.ridd.2013.09.008
Malhotra S, Khan W, Bhatia MS. Quality of Life of Parents having Children with Developmental Disabilities. Delhi Psychiatry J [Internet]. 2012;15(1):171–6. Available from: http://medind.nic.in/daa/t12/i1/daat12i1p171.pdf
Nor Ismalina Isa S, Aziz AA, Ab Rahman A, Ibrahim MI, Ibrahim WPW, Mohamad N, et al. The impact of children with disabilities on parent healthrelated quality of life and family functioning in kelantan and its associated factors. J Dev Behav Pediatr. 2013;34(4):262–8.
Bumin G, Günal A, Tükel Þ. Anxiety, depression and quality of life in mothers of disabled children. SDÜ Tıp Fakültesi Derg. 2009;15(1):6–11.
World Health Organization. International classification of functioning, disability and health: children and youth version: ICF-CY. World Health Organization. [Internet]. 2007. Available from: https://apps.who.int/iris/handle/10665/43737
Dardas LA, Ahmad MM. Coping strategies as mediators and moderators between stress and quality of life among parents of children with autistic disorder. Stress Heal. 2015;31(1):5–12.
Tseng MH, Chen KL, Shieh JY, Lu L, Huang CY, Simeonsson RJ. Child characteristics, caregiver characteristics, and environmental factors affecting the quality of life of caregivers of children with cerebral palsy. Disabil Rehabil. 2016;38(24):2374–82.
Tomoum HY, Badawy NB, Hassan NE, Alian KM. Anthropometry and body composition analysis in children with cerebral palsy. Clin Nutr. 2010;29(4):477–81.
Groce N, Challenger E, Berman-Bieler R, Farkas A, Yilmaz N, Schultink W, et al. Malnutrition and disability: unexplored opportunities for collaboration. Paediatr Int Child Health. 2014;34(4):308–14.
Dardas LA, Ahmad MM, L.A. D, M.M. A, Latefa Ali Dardas, Muayyad M. Ahmad, et al. Predictors of quality of life for fathers and mothers of children with Autistic Disorder. Res Dev Disabil [Internet]. 2014;35(6):1326–33. Available from: http://dx.doi.org/10.1016/j.ridd.2014.03.009
Hasanah CI, Naing L, Rahman ARA. World Health Organization Quality of Life Assessment : Brief Version in Bahasa Malaysia. 2003;58(1):79–88.
Ganjiwale D, Ganjiwale J, Sharma B, Mishra B. Quality of life and coping strategies of caregivers of children with physical and mental disabilities. J Fam Med Prim Care. 2016;5(2):343.
Lúcia A, Barros O, Mancia G, Dds DG, Teresa M, Rodrigues B, et al. Quality of life and burden of caregivers of children and adolescents with disabilities. 2019;(May):380–8.
Kaya K, Unsal-Delialioglu S, Ordu-Gokkaya NK, Ozisler Z, Ergun N, Ozel S, et al. Musculo-skeletal pain, quality of life and depression in mothers of children with cerebral palsy. Disabil Rehabil. 2010;32(20):1666–72.
Pozo P, Sarriá E, Brioso A. Family quality of life and psychological well-being in parents of children with autism spectrum disorders: A double ABCX model. J Intellect Disabil Res. 2014;58(5):442–58.
Hye M, Matthews AK, Park C, Lee MH, Matthews AK, Park C. Determinants of Health-related Quality of Life Among Mothers of Children With Cerebral Palsy. J Pediatr Nurs [Internet]. 2019;44:1–8. Available from: https://doi.org/10.1016/j.pedn.2018.10.001
Ghanizadeh A, Alishahi MJ, Ashkani H, Review M. Helping families for caring children with autistic spectrum disorders. Arch Iran Med. 2009;12(5):478–82.
Yang HR. How to approach feeding difficulties in young children. Korean J Pediatr. 2017;60(12):379–84.
Antolín-Amérigo D, Manso L, Caminati M, de la Hoz Caballer B, Cerecedo I, Muriel A, et al. Quality of life in patients with food allergy. Clin Mol Allergy. 2016;14(1):1–10.
Bandini LG, Curtin C, Eliasziw M, Phillips S, Jay L, Maslin M, et al. Food selectivity in a diverse sample of young children with and without intellectual disabilities. Appetite [Internet]. 2019;133:433–40. Available from: https://doi.org/10.1016/j.appet.2018.11.016
Keller H, Chambers L, Niezgoda H, Duizer L. ISSUES ASSOCIATED WITH THE USE OF MODIFIED TEXTURE FOODS. 2012;16(3):195–200.
Buzatto LL, Beresin R. Quality of life of parents with Down syndrome children. Einstein [Internet]. 2008;6(2):175–81. Available from: http://apps.einstein.br/revista/arquivos/PDF/855-Einsteinv6n2p175-81.pdf
Lin JD, Hu J, Yen CF, Hsu SW, Lin LP, Loh CH, et al. Quality of life in caregivers of children and adolescents with intellectual disabilities: Use of WHOQOL-BREF survey. Res Dev Disabil. 2009;30(6):1448–58.
Li-Tsang CW-P, Yau MK-S, Yuen HK. Success in Parenting Children with Developmental Disabilities: Some Characteristics, Attitudes and Adaptive Coping Skills. Br J Dev Disabil. 2012;47(93):61–71.
Penovich PE, Buelow J, Steinberg K, Sirven J, Wheless J. Burden of Seizure Clusters on Patients With Epilepsy and Caregivers. 2017;22(6):207–14.
Cianchetti C, Messina P, Pupillo E, Crichiutti G, Giuseppina M, Veggiotti P, et al. The perceived burden of epilepsy : Impact on the quality of life of children and adolescents and their families. 2014;
Hills MD. The psychological and social impact of epilepsy. 2007;12(Supplement 1):10–2.
Kuru N;, Piyal B. Perceived Social Support and Quality of Life of Parents of Children with Autism. 2018;
Hsiao YJ, Higgins K, Pierce T, Whitby PJS, Tandy RD. Parental stress, family quality of life, and family-teacher partnerships: Families of children with autism spectrum disorder. Res Dev Disabil [Internet]. 2017;70(August):152–62. Available from: http://dx.doi.org/10.1016/j.ridd.2017.08.013
Norizan A, Shamsuddin K. Predictors of parenting stress among Malaysian mothers of children with Down syndrome. J Intellect Disabil Res. 2010;54(11):992–1003.
Kuru N, Piyal B. Perceived social support and quality of life of parents of children with Autism. Niger J Clin Pract. 2018;21(9):1182–9.
McStay RL, Trembath D, Dissanayake C. Stress and Family Quality of Life in Parents of Children with Autism Spectrum Disorder: Parent Gender and the Double ABCX Model. J Autism Dev Disord. 2014;44(12):3101–18.
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 Qual Life Outcomes. 2007;5:1–9.
Alhazmi A, Petersen R, Donald KA. Quality of life among parents of South African children with autism spectrum disorder. Acta Neuropsychiatr. 2018;30(4):226–31.
