| Summary: | The quality of life (QoL) among primary caregivers of children with cerebral
palsy (CP) is a critical concern, influencing both caregiver well-being and overall
family dynamics. Understanding the factors that shape caregivers’ QoL is essential for
developing effective support interventions. Yet, there are limited validated tools to
assess caregiver QoL in the local context. This study aimed to develop and validate a
culturally relevant QoL measure for primary caregivers of children with CP in
Malaysia, conducted in three phases. Phase 1 involved a baseline quantitative study
assessing primary caregiver QoL, Phase 2 focused on scale development, and Phase 3
validated the scale through exploratory factor analysis (EFA). Participants were
recruited using key informant sampling in Phase 1 and purposive sampling in Phases
2 and 3, with a cross-sectional study design applied. In Phase 1, 159 primary caregivers
(Mean age = 42.8 years, SD = 8.4) who attended health screening camps in Kelantan,
Johor, and Sarawak participated. Their QoL was assessed using the Pediatric Quality
of Life Inventory™ Family Impact Module (PEDSQL FIM) and analysed through
descriptive analysis, single linear regression, and multiple linear regression. Results
indicated that primary caregivers who attending health screening camps generally had
good health-related QoL, family functioning, and overall QoL, with maternal
education level and family income identified as key factors influencing all three. In
Phase 2, a new Malay-language QoL scale was developed through literature review expert input, and in-depth interviews with eighteen local primary caregivers (Mean
age = 39.3 years, SD = 7.28), identifying eight key themes: physical constraint,
emotional distress, financial hardship, child’s difficult behavior, social support,
acceptance, beliefs, and initiative for the child’s development. Items were generated
and compiled into a draft scale, which underwent content validation by seven experts
and pre-testing with 15 caregivers. In Phase 3, a hundred Malaysian primary caregivers
(Mean age = 44.9 years, SD = 11.1) participated in the study. The newly developed
scale, named the Primary Caregiver Quality of Life (PCQoL) scale, was tested for
construct validity through EFA, concurrent validity through correlations with related
constructs, and reliability via Cronbach’s alpha. The final 28-item version, covering
eight domains, demonstrated strong validity and reliability in assessing QoL in the
Malaysian primary caregiver context. This study provides valuable insights for
healthcare providers to improve the QoL of primary caregivers of children with CP
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