Child-rearing Experiences of Parents in the Family Context of Children with Cerebral Palsy
Date Issued
2011
Date
2011
Author(s)
Lo, Am-Tzu
Abstract
Background: The incidence of cerebral palsy in newborns or young children has been not reduced in spite of the substantial improvement in the quality of medical care. Children with cerebral palsy develop brain damage and result in lifelong disability, which is undoubtedly a heavy burden and pressure for the entire family. The devastating conditions not only change the functions of a family, but also have serious impact on parents, siblings, health policy and social costs. There have been increased studies focusing on the families whose children with cerebral palsy, however, most are restricted to education, rehabilitation and psychological problems. Empirical research untaken from the point of view of nursing care to investigate how parents parenting the children with cerebral palsy still remain in lack.
Objective: This study was undertaken from the point of view of nursing care to obtain an insightful understanding of spiritual experiences, parental stress, as well as decision-making and adjustment processes while those parents facing difficulties in parenting the children with cerebral palsy, which ultimately aimed to improve family functioning and quality of care.
Methods: The study consisted of two parts and employed quantitative and qualitative methods. The goal of part 1 was to identify the parenting experiences under pressure for the actual or potential problems by applying a Parental Stress Index (PSI) questionnaire (Chinese version) to the parents of children with cerebral palsy. The second part was a hermeneutic approach using semi-structured interview guidelines. In-depth interviews were provided to guide the parents to express their true feelings. The main causes of problems and coping strategies of parents facing problems were then summarized by editing analysis.
Results: Twenty interviewees including 10 fathers and 10 mothers from 10 families of children with cerebral palsy were enrolled in this study. Quantitative evaluation using a nonparametric statistical method was applied for scaling parenting stress, which consisted of child and parent subscales, as well as life stress and total stress scores. The results were presented in two divided topics as the follows: (A) Parenting stress and life stress of fathers and mothers. (1) Subscale of children. Fathers had higher stress scores in accepting stress, followed by promoting emotional stability and balanced mood for children as compared with the mothers. Mothers suffered more assertive pressure than fathers. (2) Subscale of parents. Fathers had higher stress scores in parenting role, parenting capability and social isolation than mothers. Mothers had stress scores in the following orders: health status of parents, marital relationships, limitations of parenting role and depression. (3) Total scores of parenting stress. There was no significant difference in overall parenting stress between fathers and mothers. (4) Life stress. The life stress was lower for fathers in comparison to mothers. (B) The impact of family’s socio-economic status on parenting stress and life stress. (1) Subscale of children. High socio-economic families showed higher stress scores of promoting emotional stability and balanced mood for children than low socio-economic families. High socio-economic families also had higher pressure in admissibility and facing children with poor concentration and hyperactivity than moderate-to-low socio-economic families. (2) Subscale of parents. The scores of limitations of parenting role and marital relationships were higher in moderate-to-low socio-economic families in comparison to high socio-economic families. In contrast, higher scores of parenting role, depression, social isolation and health status of parents indicated higher stress in high socio-economic families. (3) Total score of parenting stress. No significant difference in the association of overall parenting stress with socio-economic status was observed.
(4) Life stress. No significant difference in the association of life stress score with socio-economic status was found. The results of hermeneutic approach based on child-rearing experiences were summarized to three themes: “the coming of children born with illness”, “learning and growing in difficulties” and “ the late bloomer ”. There were 6 sub-themes included in “the coming of children born with illness”: (1) a difficult truth to face for parents, (2) self-blame, sadness and unable to implement the functions of a mother, (3) a gap between expectations and reality, (4) conflict resolution and reconstruction of martial relationships, (5) avoidance of concerns from family members and friends, and (6) self-adaptation and facing challenge. The 4 sub-themes of “learning and growing in difficulties” consisted of (1) starting a new life without help, (2) mental toughness of mothers, (3) access to medical resources and assistance, and (4) conflict resolution and reconstruction of martial relationships. Seven sub-themes were included in “the good time in the future”, including (1) reconstruction of family supporting system, (2) step-by-step rehabilitation, (3) complementary alternative therapy, (4) unexpected efficacy of early treatment, (5) disappointment over compulsory education, (6) expectations of the future life for individuals, and (7) the psychological impact and responsibilities of siblings.
Conclusions: According to the summarized results of quantitative analysis and hermeneutic approach, there were four potential problems needed to be coped during parenting the children with cerebral palsy. Those problems were (1) mood conversion, (2) parenting stress and establishment of supporting systems, (3) disappointment over the fact of unexpected efficacy of early intervention, and (4) worries about transition education for the parents of children with cerebral palsy. Based on the parental child-rearing experiences, strategies can be made by medical practitioners and government authorities according to the analysis of illness characteristics in children. The functions of families can also be promoted by active education for parents in order to reduce the overall family stress and to lower the risk of potential problems.
Subjects
Children with Cerebral Palsy
Parenting/Child-Rearing Experience
Parenting Stress
Family Function
Early Intervention Program
Transitional Education
SDGs
Type
thesis
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