Purpose
Children with cerebral palsy (CP) and their parents experience various problems that can affect their quality of life. This study examined factors affecting the quality of life of children with CP.
Methods
A cross-sectional study was conducted in Yogyakarta, Indonesia, from January to August 2019. The participants were consecutively recruited children with CP aged 2 to 18 years and their parents. Ninety-eight children with CP and their parents, specifically their mothers, were recruited. Children’s health-related quality of life (HRQoL) was measured using the Pediatrics Quality of Life Cerebral Palsy. Parental HRQoL and stress were measured using the WHOQOL-BREF and Parenting Stress Index (PSI).
Results
Functional level V was the most common category for both Gross Motor Function Classification System (GMFCS) and Bimanual Fine Motor Function (BFMF) (35% and 28%, respectively). Children’s mean HRQoL was medium (49.81±20.35). The mean total PSI score was high (94.93±17.02), and 64% of parents experienced severe stress. Bivariate analysis showed that GMFCS, BFMF, number of comorbidities, presence of pain, and parental stress were significantly correlated with the total score for children’s HRQoL (p<.05). Multiple linear regression analysis (p<.05) demonstrated that more severe GMFCS and parental stress were associated with lower mean HRQoL scores in children.
Conclusion
Factors including the level of GMFCS and parental stress affected the HRQoL of children with CP. Parental stress management should be included in the comprehensive management of these children.

Citations

• Psycho-Social Quality of Life Among Children with Cerebral Palsy
  Malik Muhammad Naeem, Shahzadi Asma Tahseen, Imran Azam, Saba Afzal Shaikh, Raghab Iqbal
  Pakistan Journal of Health Sciences.2025; : 252.     CrossRef
• Proxy- and self-report evaluation of quality of life in cerebral palsy: Using Spanish version of CPQOL for Children and adolescents
  Alba Aza, Inmaculada Riquelme, María Gómez Vela, Marta Badia
  Research in Developmental Disabilities.2024; 154: 104844.     CrossRef
• Cerebral palsy: potential risk factors and functional status among children under three years, a case-control study in northwest Iran
  Morteza Haramshahi, Vahideh Toopchizadeh, Samira Pourzeinali, Neda Nikkhesal, Tahereh Sefidi Heris, Azizeh Farshbaf-Khalili, Shirin Osouli-Tabrizi
  BMC Pediatrics.2024;[Epub]     CrossRef

Purpose
The symptoms and impairments caused by cerebral palsy usually require long-term treatment, resulting in a substantial burden on the family of affected children. This study explored the experiences of fathers with prematurely-born children with cerebral palsy, with a focus on how such experiences influenced their families.
Methods
A qualitative case study method was used. Nine subjects were recruited from April 2018 to June 2019 at one hospital, and each was interviewed three times by a neonatal nurse.
Results
Five core experiences of fathers were identified: "regret for an insufficient initial response", "confronting my child born as a premature baby", "the position of being a dad who can't do anything", "the process of treatment like a tunnel with no exit", and "a father's getting meaning in life through children". These stories covered an individual's timeline and family interactions.
Conclusion
Our findings suggest that fathers of prematurely-born children tend to suppress their emotions; therefore, a novel intervention program to encourage fathers' emotional expression and to support healthier interactions with their families is needed. Moreover, our findings could contribute basic information for the construction of a community-based support system to aid families, including prematurely-born children and other persons with impairments.

Citations

• Factors influencing fathers’ involvement in the care of hospitalized preterm newborns in Balaka, Malawi
  Patani Mhango, Alinane Linda Nyondo-Mipando
  BMC Pediatrics.2023;[Epub]     CrossRef

This study is designed to understand the meaning and nature of raising children with cerebral palsy. It researches the experience of mothers of schoolchildren with cerebral palsy by the research method of hermeneutic phenomenology. The study was conducted from November 10, 1999 to December 20, 2000. When children with cerebral palsy usually show symptoms in the early stage of cerebral palsy, mothers do not take children to a doctor for diagnosis. And, most of mothers have a difficult time to accept the reality; they usually respond to the initial diagnosis with shock, reproach, and deny. When mothers start recognizing the reality, they consider that their children have cerebral palsy due to the their mismanagement during pregnancy, delivery, nursing, and initial treatment. They shelter their children from view and feel guilty that they cannot afford to try folk remedies for their children. As time passes, mothers face conflicts between families in diverse ways. Families put the blame on genetic effects. Mothers-in-law give their daughters-in-law a hard time, husbands shift the responsibility of raising children onto their wives, and trouble arises between families-in-law and mothers native families. When children grow up, it is physically difficult for mothers to take care their children. In addition, they suffer from all the troubles in family due to childrens handicap. Mothers try the diverse methods of bringing up children. However, they start getting tired of raising children as they experience failures and financial difficulties. Mothers feel collapsed recalling the ways of raising children. They feel anxiety, miserable, lonely, and worrying when they think how children would attend school, make friends, and live in the future. In this stage, mothers do their best to raise their children with hope. They tend to compare their children with others without handicap and spend money and time in attempting all the treatments. When mothers and children join the society at school, they find that the society does not understand disabled people, teachers show inconsiderate attitude, friends avoid them, and children hardly follow classes. Such experiences make mothers feel angry and frustrated. However, when children adapt to school, mothers see the possibility that children could accomplish schoolwork. They appreciate teachers help and others consideration. Mothers place appropriate expectations on their children and help them to prepare for the future. I would make following suggestions based on the results. 1. As a primary basic course of rehabilitation nursing intervention, solution-centered nursing intervention system should be developed. The intervention needs to be based on the understanding of mothers, who raise children with cerebral palsy, through in-depth interview. 2. Advance researches on the development of individual nursing intervention should be conducted. Individual nursing intervention needs to prevent and release actual pain focusing on mothers raising children with cerebral palsy. 3.Integrated curriculum that help children with cerebral palsy lead a normal school life with ordinary children should be developed. 4.Basic research on using of facilities and effective application of service volunteer to help children with cerebral palsy in school needs to be conducted.

Today, more chronically ill and handicapped children are being cared for at home by a family member caregiver. The task of caring for a family member may feel burden that the caregiver has less time and money and more work. Family functioning and their burden have influence on coping and adaptation of families with chronically-ill children. This study attempted to identify the levels of burden and family functioning in families of children with cerebral palsy and to examine their relationships. The instruments were burden scale developed by Suh and Oh(1993), and a modified Feetham Family Functioning Survey based on Roberts and Feetham.(1982). The subjects were 98 parents of children, under 15 years, who have cerebral palsy and being treated and living in Pusan. Data were collected through a self-administered questionaire from April 26 to May 29. The collected data were tested using frequencies, percentiles, means, t-test, ANOVA, and Pearson correlation coefficient with SPSSWIN program. The results of this study were as follows ; 1. The mean rating scores of burden and family functioning were 2.79 +/- .51 and 4.12 +/- .69, respectively. 2. The relationships between general characteristics and burden were statistically significant difference : degree of children's handicap(F=6.333, P <.01). The relationships between general characteristics and family functioning were statistically significant differences : familial relation with the children(F=3.628, P <.05), caregiver's health status(F=4.359, P <.05), age of children (F=4.185, P <.05), and duration of treatment (F=6.802, P <.01). 3. In families of children with cerebral palsy, there was significantly negative correlation between the burden of parents and the performance of family functioning(r=-.230, P <.05). There were significantly negative correlations between the burden of parents and the satisfaction of family functioning (r=-.211, P <.05), and between the perceived importance and the satisfaction of family functioning(r=-.481, P <.01); however, there was a positive correlation between the performance and the perceived importance of family functioning(r=.425, P <.01). In conclusion, this study suggests that families of children with cerebral palsy need family-focused nursing interventions as supportive care for relieving their burden and for improving family functioning.

PURPOSE
To evaluate the effects of abdominal meridian massage either with the use of aroma oils or without using the oils for the relief of constipation in institutionalized children with cerebral palsy.
METHOD
Using a nonequivalent control group pretest-posttest design, 40 children were randomly assigned to experimental (n=21) and control (n=19) groups. The experimental group received abdominal meridian massage with mixture of aroma oils, and the control group received abdominal meridian massage only. Prior to the intervention, baseline data were collected, and then abdominal meridian massage with or without aroma oils were given to both groups every morning for 15 minutes a day, six days a week, for 2 weeks. Outcome measures were number of bowel movements, amount of stool (gm), and frequency of laxatives, suppositories or enema. Using SPSS/Win 12.0 program, data were analyzed by chi-square test, t-test, and repeated measures ANOVA.
RESULTS
Children in the experimental group defecated a larger volume of stool, and used fewer laxatives than those in the control group. The treatment effects lasted for 1 week after treatment.
CONCLUSION
Abdominal meridian massage with aroma oils appears to be an effective adjunct maneuver in relieving constipation among institutionalized children with cerebral palsy.