Experiences and Needs of Parents Caring for Children with Cerebral Palsy: A Systematic Review.

OBJECTIVE

Caregiver burden of parents of children with disabilities is negatively associated with parental quality of life and psychosocial well-being and has been identified as a public health concern. Reviews have consolidated the experiences of these parents, but little is understood about the unique challenges faced by parents of children with cerebral palsy (CP). We aim to conduct an in-depth synthesis of the experiences and needs of parents of children with CP to better support them.

METHODS

Six electronic databases were searched systematically for qualitative research, and a thematic synthesis was performed.

RESULTS

Seventeen studies from 1988 to 2019 encapsulating the experiences of 226 parents were included in this review. Four themes and 11 subthemes were identified: (1) self: the caregiver-parent trajectory (coming to terms with the fact, physical and emotional demands, and a nice outlet), (2) family: maintaining the family unit (juggling multiple children and parenting as a co-occupation), (3) society: social repercussions (facing public discrimination, rejection by extended family, and loss of freedom), and (4) parents' wish list (open communication and caring attitudes, funding and health care accessibility, social integration, and inclusivity). Apart from emotional adaptation and physical childcare difficulty, parents indicated a need for more information on health care services, funding, better attitudes and empathy from health care providers, properly trained educators, disability-friendly fixtures, and more public awareness.

CONCLUSION

The findings in this review provide insight into the true experiences and needs of parents caring for children with CP and will aid clinicians in the development of family-centered care pathways for these patients.