Exploring Caregiving Experiences and Needs of Mothers of Children with Cerebral Palsy

Exploring Caregiving Experiences and Needs of Mothers of Children with Cerebral Palsy

Parents play a major role while caring for a child with Cerebral Palsy (CP). Each child with CP and their caregivers needs constant professional support in terms of medical care, psycho-education, guidance and support in order to achieve maximum functioning. Mothers of children with cerebral palsy are vulnerable because the caregiving may affect their personal and marital life, work, finances, relationships, and other responsibilities. Therefore, it is important to understand their experiences this study explores caregiving experiences and needs of mothers of a child with cerebral palsy. This qualitative exploratory study used semi-structured open-ended interviews for data collection from 25 mothers of children with Cerebral Palsy who attended regular clinical assessments at Unit of Hope OP clinic. The data were analyzed in Atlas. ti 8 trial version using thematic analysis. Six major themes emerged from the thematic analysis which includes: pathways of care, challenges in taking care of the child, impact (subjective and objective) on mothers and their family, coping mechanism and psycho-social needs. Mothers expressed that they experience unpreparedness; unsupportive interaction; insecurity/uncomfortable on caregiving by others; challenges in decision making, finding the right care, meeting individual family member???s needs; they had inappropriate expectations of improvement, difficulties in treatment adherence and lack of knowledge, lack of respite, lack of support from family members/relatives, changes in the family system, changes in personal life. Mothers had caregiver burden and emotional challenges. The mothers adopted both maladaptive and adaptive coping strategies. In this study, mothers expressed various needs like the need for professional support, the need for respite care, and the need for family support. In conclusion, having a child with cerebral palsy negatively affect the mothers. During the caregiving process, they have some unmet needs which need to be addressed. The findings of the study emphasize that it is important to understand the caregiving experiences and needs of mothers of children with cerebral palsy to plan interventions to support these mothers in caring for their child.

ASHILIN MARY MATHEW

Social Work