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

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.

Implications for Rehabilitation

• There is a need in Malaysia to offer counseling, support groups, and assistance programs for parents of children with cerebral palsy.

• Healthcare professionals, who offer rehabilitation services to children with cerebral palsy, need greater awareness of the needs of families and caregivers and should be educated about how to best support them.

• There should be greater recognition of the importance of respite and relief from caregiving among Malaysian parents of children with cerebral palsy.

Keywords:

• Stigma
• stress
• quality of life
• parents
• cerebral palsy

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research was partially funded by the UKM collaboration grant (DPK-2022-002) (first author).