Child characteristics, caregiver characteristics, and environmental factors affecting the quality of life of caregivers of children with cerebral palsy

Abstract

Purpose: The study aimed to investigate comprehensively the determinants of the quality of life (QOL) of caregivers of children with cerebral palsy (CP) based on the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY).

Methods: A total of 167 children with CP (mean age 9.06 years, SD 2.61 years) and their caregivers (mean age 40.24 years, SD 5.43 years) participated in this study. The QOL of caregivers was measured with the World Health Organization Quality of Life-BREF-Taiwan version (WHOQOL-BREF-TW). The potential determinants of QOL were collected, including child characteristics, caregiver characteristics, and environmental factors from all dimensions of the ICF-CY and analysed using multiple regression models.

Results: Four multiple regression models revealed that determinants of the QOL of caregivers of children with CP was multidimensional, encompassing child characteristics (age, type of CP, fine motor impairment, other diseases, behaviour and emotions, visual impairment, hearing impairment), caregiver characteristics (general mental health, parenting stress, marital status, family coping patterns, and socio-economic status), and environmental factors (child’s medication, school setting, and current rehabilitation service, caregiver’s spouse’s age, family life impacts, and domestic helper).

Conclusions: Knowledge of the determinants of QOL could serve as a guide in a holistic approach to evaluation and intervention and help plan interventions targeted at these determinants to improve the QOL of caregivers of children with CP.

Implications for Rehabilitation

• Caregivers of children with CP had lower QOL, except the environment QOL.

• The QOL determinants of caregivers of children with CP are multidimensional, including child characteristics, caregiver characteristics, and environmental factors.

• In addition to child characteristics of severity of fine motor impairments and emotional and behavioural problems, caregiver characteristics of general mental health, parenting stress, and coping patterns, and environmental factors of family life impacts, and school setting demonstrated important relationships with caregiver QOL.

Keywords:

• Caregivers
• cerebral palsy
• determinants
• ICF-CY
• quality of life

Acknowledgements

We especially thank Dr. Hui-Yi Wang, and Cheng-Chang Cheng, as well as the physical and occupational therapists of the Department of Physical Medicine & Rehabilitation of National Taiwan University Hospital, the Ministry of Education, the Bureaus of Education of all the cities and counties, the Cerebral Palsy Association of R.O.C., all local associations and foundations of Cerebral Palsy, and the administrators and teachers of kindergartens and elementary schools for their assistance with recruiting children. We are also grateful to all parents and children for participating in the study.

Declaration of interest

The authors declare no conflict of interest. The study was funded by the National Science Council of Taiwan (grant number: NSC 100–2314-B-002-009).