The relationship between affiliate stigma, stress, and quality of life for parents of individuals with cerebral palsy in Malaysia

Chu SY 1 , Rafi ABM 1 , Lee J 2 , Fierro V 3 , Gan CH 4 , Joginder Singh S 5 Show all authors , Hersh D 6 , Lin LY 7

Affiliations 

  • 1 Universiti Kebangsaan Malaysia, Faculty of Health Sciences, Centre for Healthy Ageing and Wellness (H-CARE), Speech Sciences Programme Jalan Raja Muda Abdul Aziz, Kuala Lumpur, Malaysia
  • 2 Department of Educational Psychology, Leadership, and Counseling, Texas Tech University, Lubbock, TX, USA
  • 3 Department of Speech-Language Pathology, Delaware Valley University, Doylestown, PA, USA
  • 4 Universiti Kebangsaan Malaysia, Faculty of Health Sciences, Centre for Rehabilitation and Special Needs Studies (iCaRehab), Programme of Clinical Psychology and Behavioural Health, Jalan Raja Muda Abdul Aziz, Kuala Lumpur, Malaysia
  • 5 Universiti Kebangsaan Malaysia, Faculty of Health Sciences, Centre for Rehabilitation and Special Needs Studies (iCaRehab), Speech Sciences Programme, Jalan Raja Muda Abdul Aziz, Kuala Lumpur, Malaysia
  • 6 Speech Pathology, Curtin School of Allied Health, Curtin University, Perth, Australia
  • 7 Department of Occupational Therapy, College of Medicine, National Cheng Kung University, Tainan, Taiwan
Disabil Rehabil, 2023 Dec;45(24):4035-4047.
PMID: 36541160 DOI: 10.1080/09638288.2022.2153304

Abstract

OBJECTIVE: To examine the relationship between affiliate stigma, stress, and perceived quality of life among parents of children with cerebral palsy (CP).

METHOD: Surveys (Study 1) and semi-structured interviews (Study 2) were used to collect data. Thirty-eight respondents completed the Affiliate Stigma Scale (ASS), Caregiver Burden Inventory (CBI), and Care-related Quality of Life (CarerQol) scales (GMFCS). Eleven respondents took part in semi-structured interviews, which were then thematically evaluated.

RESULTS: Parents did not feel stigmatized because they had a child with CP. However, parents needed some form of short-term relief from caregiving. After controlling for demographics, high stress respondents experienced high affiliate stigma whereas low stress respondents had better quality of life. Although the respondents with less stigma had a better quality of life, this effect was moderate. Three major themes emerged from the interviews.

CONCLUSION: Counseling, support groups, and helper services should be offered to parents. Also, healthcare professionals participating in CP rehabilitation, community-based rehabilitation, and health institutions should be educated on how to better help parents of children with CP.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.

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