{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,21]],"date-time":"2026-09-21T17:54:42Z","timestamp":1790013282518,"version":"4.0.1"},"reference-count":48,"publisher":"MDPI AG","issue":"5","license":[{"start":{"date-parts":[[2021,2,28]],"date-time":"2021-02-28T00:00:00Z","timestamp":1614470400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100004595","name":"Universiti Sains Malaysia","doi-asserted-by":"publisher","award":["1001.CSKK.870020"],"award-info":[{"award-number":["1001.CSKK.870020"]}],"id":[{"id":"10.13039\/501100004595","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["IJERPH"],"abstract":"<jats:p>Caregiving for children with cerebral palsy (CP) has proved to negatively impact on the physical and psychological well-being of their primary caregivers. The aim of the current study was to examine the overall impact of caregiving for children with CP on the primary caregivers\u2019 health-related quality of life (HRQOL) and family functioning, and to identify potential factors associated with primary caregivers\u2019 HRQOL and family functioning. The cross-sectional study involved a total of 159 primary caregivers of children with CP with a mean age of 42.8 \u00b1 8.4 years. Demographic data and information on the physical and leisure activities of the primary caregivers were collected, and their quality of life (QOL) was measured based on the self-reported Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM). Primary caregivers in the current study have shown good HRQOL and family functioning, with scores of 82.4 and 85.3 out of 100, respectively. Through multiple linear regression analyses, the mother\u2019s level of education, family monthly income, sleeping problems in children with CP, and the existence of children with other types of disability have been identified as factors contributing to HRQOL and family functioning. The findings help set out the course for stakeholders to establish action to enhance the QOL of primary caregivers.<\/jats:p>","DOI":"10.3390\/ijerph18052351","type":"journal-article","created":{"date-parts":[[2021,2,28]],"date-time":"2021-02-28T20:43:32Z","timestamp":1614545012000},"page":"2351","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":32,"title":["Health-Related Quality of Life and Family Functioning of Primary Caregivers of Children with Cerebral Palsy in Malaysia"],"prefix":"10.3390","volume":"18","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7927-7074","authenticated-orcid":false,"given":"Kelvin","family":"Ying","sequence":"first","affiliation":[{"name":"Interdisciplinary Health Sciences Unit, School of Health Sciences, Universiti Sains Malaysia, Kubang Kerian 16150, Kelantan, Malaysia"},{"name":"Cerebral Palsy Research Cluster, Universiti Sains Malaysia, Kubang Kerian 16150, Kelantan, Malaysia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hans Van","family":"Rostenberghe","sequence":"additional","affiliation":[{"name":"Cerebral Palsy Research Cluster, Universiti Sains Malaysia, Kubang Kerian 16150, Kelantan, Malaysia"},{"name":"Department of Paediatrics, School of Medical Sciences, Universiti Sains Malaysia, Kubang Kerian 16150, Kelantan, Malaysia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1103-3871","authenticated-orcid":false,"given":"Garry","family":"Kuan","sequence":"additional","affiliation":[{"name":"Cerebral Palsy Research Cluster, Universiti Sains Malaysia, Kubang Kerian 16150, Kelantan, Malaysia"},{"name":"Exercise and Sports Science, School of Health Sciences, Universiti Sains Malaysia, Kubang Kerian 16150, Kelantan, Malaysia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mohammad Haris Amirul","family":"Mohd Yusoff","sequence":"additional","affiliation":[{"name":"Cerebral Palsy Research Cluster, Universiti Sains Malaysia, Kubang Kerian 16150, Kelantan, Malaysia"},{"name":"Department of Chemical Pathology, School of Medical Sciences, Universiti Sains Malaysia, Kubang Kerian 16150, Kelantan, Malaysia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Siti Hawa","family":"Ali","sequence":"additional","affiliation":[{"name":"Interdisciplinary Health Sciences Unit, School of Health Sciences, Universiti Sains Malaysia, Kubang Kerian 16150, Kelantan, Malaysia"},{"name":"Cerebral Palsy Research Cluster, Universiti Sains Malaysia, Kubang Kerian 16150, Kelantan, Malaysia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nik Soriani","family":"Yaacob","sequence":"additional","affiliation":[{"name":"Cerebral Palsy Research Cluster, Universiti Sains Malaysia, Kubang Kerian 16150, Kelantan, Malaysia"},{"name":"Department of Chemical Pathology, School of Medical Sciences, Universiti Sains Malaysia, Kubang Kerian 16150, Kelantan, Malaysia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2021,2,28]]},"reference":[{"key":"ref_1","unstructured":"Department of Statistics Malaysia (2020, September 09). Children Statistics, Malaysia, Available online: https:\/\/www.dosm.gov.my\/v1\/index.php?r=column\/ctwoByCat&parent_id=123&menu_id=U3VPMldoYUxzVzFaYmNkWXZteGduZz09#."},{"key":"ref_2","unstructured":"Gan, Z. (2020, September 09). Issue Brief: Children with Disabilities in Malaysia. Available online: https:\/\/www.unicef.org\/malaysia\/reports\/issue-brief-children-disabilities-malaysia."},{"key":"ref_3","unstructured":"Thompson, S., and Disability Prevalence and Trends (2020, August 24). K4D Helpdesk Report. Available online: https:\/\/gsdrc.org\/publications\/disability-prevalence-and-trends\/."},{"key":"ref_4","first-page":"127","article-title":"The rights of persons with disabilities in Malaysia: The underlying reasons for ineffectiveness of Persons with Disabilities Act 2008","volume":"1","author":"Abdullah","year":"2017","journal-title":"Int. J. Stud. Child. Women Elder. Disabil."},{"key":"ref_5","unstructured":"United Nations Children\u2019s Fund (UNICEF) Malaysia (2020, November 18). Children with Disabilities in Malaysia: Mapping the Policies, Programmes, Interventions and Stakeholders. Available online: https:\/\/www.unicef.org\/malaysia\/UNICEF-Children_with_Disability_in_Malaysia_2014_lowres.pdf."},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"627","DOI":"10.1007\/BF02724123","article-title":"Evaluation of a child with cerebral palsy","volume":"71","author":"Aneja","year":"2004","journal-title":"Indian J. Pediatr."},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"509","DOI":"10.1111\/dmcn.12080","article-title":"An update on the prevalence of cerebral palsy: A systematic review and meta-analysis","volume":"55","author":"Oskoui","year":"2013","journal-title":"Dev. Med. Child Neurol."},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"149","DOI":"10.1111\/dmcn.12551","article-title":"International classification of functioning, disability and health core sets for children and youth with cerebral palsy: A consensus meeting","volume":"57","author":"Schiariti","year":"2015","journal-title":"Dev. Med. Child Neurol."},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"1220","DOI":"10.1542\/peds.110.6.1220","article-title":"Trends in the prevalence of cerebral palsy in a population-based study","volume":"110","author":"Winter","year":"2002","journal-title":"Pediatrics"},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"1447","DOI":"10.3109\/09638288.2012.737081","article-title":"Sorrow, coping and resiliency: Parents of children with cerebral palsy share their experiences","volume":"35","author":"Whittingham","year":"2013","journal-title":"Disabil. Rehabil."},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"98","DOI":"10.1002\/j.2048-7940.2008.tb00212.x","article-title":"The impact of child disability type on the family","volume":"33","author":"Eddy","year":"2008","journal-title":"Rehabil. Nurs."},{"key":"ref_12","first-page":"259","article-title":"Coping skills and psychosocial adjustments among parents of children with learning disabilities (LD)","volume":"18","author":"Harun","year":"2017","journal-title":"ASEAN J. Psychiatry"},{"key":"ref_13","first-page":"81","article-title":"Perceived stress and coping styles among Malay caregivers of children with learning disabilities in Kelantan","volume":"24","author":"Isa","year":"2017","journal-title":"Malays. J. Med. Sci."},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"784","DOI":"10.1111\/j.1469-8749.2008.03090.x","article-title":"Behaviour in children with cerebral palsy with and without epilepsy","volume":"50","author":"Carlsson","year":"2008","journal-title":"Dev. Med. Child Neurol."},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"1557","DOI":"10.3109\/09638288.2010.535090","article-title":"Responding to the challenges of parenting a child with cerebral palsy: A focus group","volume":"33","author":"Whittingham","year":"2011","journal-title":"Disabil. Rehabil."},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"421","DOI":"10.1080\/0300443042000313403","article-title":"Psychological well-being among mothers of children with cerebral palsy","volume":"176","author":"Barlow","year":"2006","journal-title":"Early Child Dev. Care"},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"262","DOI":"10.1097\/DBP.0b013e318287cdfe","article-title":"The impact of children with disabilities on parent health-related quality of life and family functioning in Kelantan and its associated factors","volume":"34","author":"Isa","year":"2013","journal-title":"J. Dev. Behav. Pediatr."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"37","DOI":"10.1007\/s11205-005-5552-1","article-title":"Interpreting the WHOQOL-BREF: Preliminary population norms and effect sizes","volume":"77","author":"Hawthorne","year":"2006","journal-title":"Soc. Indic. Res."},{"key":"ref_19","doi-asserted-by":"crossref","first-page":"55","DOI":"10.1186\/1477-7525-2-55","article-title":"The PedsQL\u2122 family impact module: Preliminary reliability and validity","volume":"2","author":"Varni","year":"2004","journal-title":"Health Qual. Life Outcomes"},{"key":"ref_20","doi-asserted-by":"crossref","unstructured":"Isa, S.N.I., Ishak, I., Ab Rahman, A., Saat, N.Z.M., Din, N.C., Lubis, S.H., Ismail, M.F.M., and Suradi, N.R.M. (2018). A psychometric evaluation of the Malay version of PedsQLTM Family Impact Module among caregivers of children with learning disabilities. ICGH Conference Proceedings, Proceedings of the 1st International Conference on Global Health, JS Luwansa Hotel, Indonesia, 9\u201311 November 2016, KnE Life Sciences.","DOI":"10.18502\/kls.v4i1.1391"},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"1036","DOI":"10.1177\/0883073814533008","article-title":"Classification in childhood disability: Focusing on function in the 21st century","volume":"29","author":"Rosenbaum","year":"2014","journal-title":"J. Child Neurol."},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"1273","DOI":"10.1007\/s11165-016-9602-2","article-title":"The use of Cronbach\u2019s alpha when developing and reporting research instruments in science education","volume":"48","author":"Taber","year":"2018","journal-title":"Res. Sci. Educ."},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"581","DOI":"10.1007\/s11165-014-9438-6","article-title":"Global patterns in students\u2019 views of science and interest in science","volume":"45","author":"Haste","year":"2015","journal-title":"Res. Sci. Educ."},{"key":"ref_24","doi-asserted-by":"crossref","first-page":"168","DOI":"10.4102\/ajod.v4i1.168","article-title":"Caring for a child with cerebral palsy: The experience of Zimbabwean mothers","volume":"4","author":"Dambi","year":"2015","journal-title":"Afr. J. Disabil."},{"key":"ref_25","first-page":"1665","article-title":"The quality of life in children with cerebral palsy","volume":"32","author":"Parisi","year":"2016","journal-title":"Acta Med. Mediterr."},{"key":"ref_26","doi-asserted-by":"crossref","first-page":"e626","DOI":"10.1542\/peds.2004-1689","article-title":"The health and well-being of caregivers of children with cerebral palsy","volume":"115","author":"Raina","year":"2005","journal-title":"Pediatrics"},{"key":"ref_27","doi-asserted-by":"crossref","first-page":"338","DOI":"10.1111\/j.1469-8749.2010.03848.x","article-title":"Time demands of caring for children with cerebral palsy: What are the implications for maternal health?","volume":"53","author":"Sawyer","year":"2011","journal-title":"Dev. Med. Child Neurol."},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"683","DOI":"10.3109\/09638288.2015.1061607","article-title":"Quality of life of Finnish children with cerebral palsy","volume":"38","author":"Varho","year":"2016","journal-title":"Disabil. Rehabil."},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"17","DOI":"10.1177\/1367493514540816","article-title":"Quality of life in mothers of children with cerebral palsy: The role of children\u2019s gross motor function","volume":"20","author":"Dehghan","year":"2016","journal-title":"J. Child Health Care"},{"key":"ref_30","doi-asserted-by":"crossref","first-page":"223","DOI":"10.4103\/0976-3147.178657","article-title":"Caregiver-reported health-related quality of life of children with cerebral palsy and their families and its association with gross motor function: A South Indian study","volume":"7","author":"Surender","year":"2016","journal-title":"J. Neurosci. Rural Pract."},{"key":"ref_31","doi-asserted-by":"crossref","first-page":"413","DOI":"10.1080\/13575279.2017.1347146","article-title":"Barriers and facilitators to caring for a child with cerebral palsy in rural communities of the Western Cape, South Africa","volume":"24","author":"Pretorius","year":"2018","journal-title":"Child Care Pract."},{"key":"ref_32","doi-asserted-by":"crossref","first-page":"e1594","DOI":"10.1542\/peds.2014-1926","article-title":"Motor severity in children with cerebral palsy studied in a high-resource and low-resource country","volume":"134","author":"Benfer","year":"2014","journal-title":"Pediatrics"},{"key":"ref_33","first-page":"299","article-title":"Quality of life in mothers of children with cerebral palsy","volume":"56","author":"Glinac","year":"2017","journal-title":"Acta Clin. Croat."},{"key":"ref_34","doi-asserted-by":"crossref","first-page":"e75","DOI":"10.1016\/j.pedn.2019.05.011","article-title":"The quality of life of Polish children with cerebral palsy and the impact of the disease on the family functioning","volume":"47","author":"Rozensztrauch","year":"2019","journal-title":"J. Pediatr. Nurs."},{"key":"ref_35","doi-asserted-by":"crossref","unstructured":"Zuurmond, M., O\u2019Banion, D., Gladstone, M., Carsamar, S., Kerac, M., Baltussen, M., Tann, C.J., Gyamah Nyante, G., and Polack, S. (2018). Evaluating the impact of a community-based parent training programme for children with cerebral palsy in Ghana. PLoS ONE, 13.","DOI":"10.1371\/journal.pone.0202096"},{"key":"ref_36","doi-asserted-by":"crossref","first-page":"834","DOI":"10.1016\/j.psyneuen.2010.11.005","article-title":"Salivary cortisol, stress, and health in primary caregivers (mothers) of children with cerebral palsy","volume":"36","author":"Bella","year":"2011","journal-title":"Psychoneuroendocrinology"},{"key":"ref_37","doi-asserted-by":"crossref","first-page":"S8","DOI":"10.5993\/AJHB.31.s1.3","article-title":"Health literacy skills of US adults","volume":"31","author":"Rudd","year":"2007","journal-title":"Am. J. Health Behav."},{"key":"ref_38","unstructured":"Kickbusch, I., Pelikan, J.M., Apfel, F., and Tsouros, A.D. (2013). Health Literacy. The Solid Facts, World Health Organization, Regional Office for Europe. Available online: https:\/\/apps.who.int\/iris\/bitstream\/handle\/10665\/326432\/9789289000154-eng.pdf."},{"key":"ref_39","doi-asserted-by":"crossref","first-page":"803","DOI":"10.3109\/09638288.2012.708818","article-title":"Investigation of quality of life in mothers of children with cerebral palsy in Iran: Association with socio-economic status, marital satisfaction and fatigue","volume":"35","author":"Khayatzadeh","year":"2013","journal-title":"Disabil. Rehabil."},{"key":"ref_40","first-page":"923","article-title":"Stress in parents of children with Autism: A Malaysian experience","volume":"27","author":"Basri","year":"2019","journal-title":"Intellect. Discourse"},{"key":"ref_41","first-page":"1","article-title":"Cultural influences in mental health help-seeking among Malaysian family caregivers","volume":"2","author":"Mohamad","year":"2013","journal-title":"Pertanika J. Soc. Sci. Hum."},{"key":"ref_42","doi-asserted-by":"crossref","first-page":"183","DOI":"10.1080\/09638230500059997","article-title":"Mental health concepts and program development in Malaysia","volume":"14","author":"Haque","year":"2005","journal-title":"J. Ment. Health"},{"key":"ref_43","doi-asserted-by":"crossref","first-page":"74","DOI":"10.3109\/13668250.2016.1196657","article-title":"Wellbeing of mothers of children with \u201cAUTISM\u201d in Malaysia: An interpretative phenomenological analysis study","volume":"42","author":"Ilias","year":"2017","journal-title":"J. Intellect. Dev. Disabil."},{"key":"ref_44","doi-asserted-by":"crossref","first-page":"418","DOI":"10.1016\/j.sbspro.2017.02.084","article-title":"Families with a disabled member: Impact and family education","volume":"237","author":"Lara","year":"2017","journal-title":"Procedia Soc. Behav. Sci."},{"key":"ref_45","doi-asserted-by":"crossref","first-page":"62","DOI":"10.4103\/0972-2327.107708","article-title":"Sleep assessment of children with cerebral palsy: Using validated sleep questionnaire","volume":"16","author":"Elsayed","year":"2013","journal-title":"Ann. Indian Acad. Neurol."},{"key":"ref_46","doi-asserted-by":"crossref","first-page":"618","DOI":"10.1111\/j.1651-2227.2012.02603.x","article-title":"Sleep problems in children with cerebral palsy and their relationship with maternal sleep and depression","volume":"101","author":"Wayte","year":"2012","journal-title":"Acta Paediatr."},{"key":"ref_47","doi-asserted-by":"crossref","first-page":"180","DOI":"10.1207\/s15374424jccp3502_2","article-title":"Behavioral family intervention for children with developmental disabilities and behavioral problems","volume":"35","author":"Roberts","year":"2006","journal-title":"J. Clin. Child Adolesc. Psychol."},{"key":"ref_48","doi-asserted-by":"crossref","first-page":"531","DOI":"10.1093\/jpepsy\/jsv118","article-title":"Parenting intervention combined with acceptance and commitment therapy: A trial with families of children with cerebral palsy","volume":"41","author":"Whittingham","year":"2016","journal-title":"J. Pediatr. Psychol."}],"container-title":["International Journal of Environmental Research and Public Health"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/1660-4601\/18\/5\/2351\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,11]],"date-time":"2025-10-11T05:30:19Z","timestamp":1760160619000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/1660-4601\/18\/5\/2351"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,2,28]]},"references-count":48,"journal-issue":{"issue":"5","published-online":{"date-parts":[[2021,3]]}},"alternative-id":["ijerph18052351"],"URL":"https:\/\/doi.org\/10.3390\/ijerph18052351","relation":{},"ISSN":["1660-4601"],"issn-type":[{"value":"1660-4601","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,2,28]]}}}