The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy

Abstract

The overall care for children with cerebral palsy (CP) is challenging to the family which causes significant impacts to their livelihood. There is limited qualitative research that reports the unmet needs of parents with physically disabled children, especially highly dependent CP. The aim of this study was to explore the unmet needs of parents of highly dependent children with CP. A qualitative study using semi-structured face to face interviews was carried out among nine parents of children with CP with gross motor classification function score (GMFCS) levels III, IV, and V. The interviews were tape-recorded and transcribed verbatim. Transcribed data was analysed using thematic analysis method. Several unmet needs were highlighted by the parents; namely the needs in receiving information regarding CP conditions, getting psychological and financial support and explaining the child’s condition to strangers. In addition, parents expressed the need for better support from the social welfare department, as well as in effectively organising family functioning. The findings of this study indicate that there is a need for the healthcare professionals to develop suitable strategies to assist the parents of highly dependent children with CP in fulfilling their specific needs. The role of relevant agencies should be optimised in addressing this area of concern.

Children with severe disabilities: adaptation, virtual education, and prospects. Experiences of three Peruvian mothers, COVID-19 context

“…The girl depends on all family members and understands cleanliness, clothing, food etc. The needs of a family with a child with cerebral palsy are different according to the child’s functional capacity; if the disability is severe or highly dependent, the group requires resources and expensive medications since they present frequent medical problems, increasing the needs and financial limitations of families [ 32 ]. On the other hand, the mother considers the importance of physical therapy in this distance education, which must be carried out in a specialized center due to her daughter’s disability; however, this is not possible due to the girl’s vulnerability to the pandemic.…”

Early Identification of Cerebral Palsy Using Neonatal MRI and General Movements Assessment in a Cohort of High-Risk Term Neonates

“…These findings have important clinical relevance, because having a child with CP increases psychosocial distress and decreases the quality of life in the family. 26,27 Early communication of risk for and diagnosis of CP has been identified as a priority by parents. 8 Accurate and clearly communicated risk information has the potential to mitigate familial stress, as well as increase access to financial and other resources to meet functional needs such as early intervention, transportation, and equipment that may improve quality of life.…”

Benefits of a Low-Cost Walking Device in Children with Cerebral Palsy: A Qualitative Study

“…As the evidence suggests, participation in the community environment is essential for health, as it promotes an impression of feeling included, as well as opportunities for social contact and physical activity [ 17 ] that impact children’s moods and self-esteem. Community participation is vital for the wellbeing of young people.…”

“…In the second stage, in-depth interviews were conducted. The face-to-face, in-depth interviews concerned six phases: thematizing, designing, interviewing, transcribing, analyzing, and verifying [ 17 ]. The interviews were administrated by a researcher who had not been involved in any treatment.…”