Experiences Shared Through the Interviews from Fifteen Mothers of Children with Cerebral Palsy

Abstract

The study utilized an interview format to examine the difficulties experienced by mothers of children with cerebral palsy. Interviews were conducted in the province of Zonguldak between December 2013 and February 2014, Turkey, at a special rehabilitation center with 15 children with cerebral palsy and their mothers registered at the center. A voice recorder was used during the interviews, but since the mothers expressed their unwillingness to have their voices recorded during the interviews when they talked about their sexual lives, face to face interviews were held in a suitable physical environment without the use of a recorder. A semi-structured questionnaire was used during the interviews. The couples are troubled with many difficulties that include personal relations, social and economic problems, as well as issues involving the sick child's care and education. Many difficulties that include personal relations, social and economic problems, as well as issues involving the sick child's care and education, trouble couples with children diagnosed with cerebral palsy. In connection with these difficulties, it was also seen that the situation took a toll on the sexual lives of parents. In the light of these findings, our recommendation is that rehabilitation centers catering to the education of children with cerebral palsy should have qualified nurses on hand to provide a professional approach to reviewing the difficulties mothers face and emphasizing the importance of sexuality.

Mothers’ experiences after single-event multilevel orthopedic surgery in cerebral palsy: A descriptive qualitative study

“…Our study found that the participant mothers spent most of their time on their children with CP and less on their husbands and their other children, which created problems within the family. Similar findings have also been noted by other studies (5,11,(22)(23)(24). Although the mothers are the most affected, having a child with CP hurts all family members and intra-family relationships.…”

“…This situation enhances the dependency of the children on their mothers. Increased dependence on mothers creates new problems for these mothers and harms their expectations, emotions, and feelings (5,23,27). In our study, participants expressed their concerns about the future.…”

“…However, with the increase in their weight, carrying the children to meet their daily needs becomes harder (21,22). This, in turn, increases stress and puts an additional burden on the mothers, which ends up with various physical and psychological problems (11,23,24). Most of the participant mothers in our study expressed that they suffered from physical and psychosocial problems related to caregiving.…”

“…Taking care of children with CP, who have mental and sensory problems and physical limitations, becomes harder after these children undergo a surgical operation. During this period, the mothers of these children take the responsibility to care for their children on the one hand and continue to fulfill their other responsibilities related to their families, on the other hand (5,22,23). This, in turn, increases the stress levels of the mothers and creates family problems (5,24).…”

Cuidado Parental à Criança com Paralisia Cerebral: uma Revisão Sistemática da Literatura

“…Os trabalhos direcionados às dificuldades das mães ressaltaram a cultura e as condições sociais precárias que estariam permeando de maneira negativa os cuidados às crianças com PC (KURTUNCU et al, 2013;ST JOHN, 2012; KELLETT; ST JOHN, 2010). Kurtuncu et al (2014) deram voz às mães mulçumanas de 15 crianças com PC moradoras da Turquia e detectou sérias dificuldades que incluíam problemas nas relações pessoais, assim como nas relações conjugais, dificuldades no processo de inclusão social e dificuldades econômicas associadas aos cuidados e educação da criança com PC. Em consonância com estes achados, os trabalhos de Huang, Kellett e St John (2012) e Huang, Kellett e St John (2010) com 15 mães chinesas apontaram que mães de crianças com PC além de permanecerem solitárias no papel de cuidadoras principais, eram hostilizadas pelas famílias de seus maridos, tendo, portanto, pouco ou nenhum apoio nos cuidados aos seus filhos.…”