Children With Cerebral Palsy and Genetic Disorder - Assignment Example

Type of study Location setting Variables Framework Theory Study Design Sample Quantitative Department of Pediatric Rehabilitation of the Medical University of Bialystok Independent Variable: Cerebral palsy Dependent variable: Quality of life: physical health, psychological, social relationships and environment. Controlled Variable: None Is there a framework? If so, describe. No theoretical framework is found, although the authors briefly explored the literature on the components of quality of life and the relationship between quality of life and stress/anxiety. This study is a cross-sectional design with a control group. It is not experimental in the sense that cerebral palsy is inflicted on the subjects. Instead, a post-test study is apparent, where the post-results of the effects of having cerebral palsy are examined. The authors wanted to know the differences and similarities in the quality of life conditions between parents with children who have cerebral palsy and parents who have healthy children. The authors chose the right research design because they aimed to know how cerebral palsy affects the parents, instead of children with cerebral palsy per se. Through the comparative approach, they can determine these differences and similarities and make deductions from the data. Sample Size: 40 parents of children with cerebral palsy aged 6-17 years. The control group was composed of 40 parents of healthy children (27 mothers and 13 fathers). Sampling method: Convenience sampling Sample characteristics: They are parents of children with cerebral palsy aged 6-17 years. These children were treated at the Department of Pediatric Rehabilitation of the Medical University of Bialystok. Their cerebral palsy conditions are as follows: spastic tetraplegia - 18 (45%), spastic hemiplegia (hemiplegia spastica) -15 (37.5%), spastic diplegia (diplegia spastica) -7 (17.5%). Data sources Procedures Data Analysis Results/Findings Recommendations Data collection Measures: Data is collected from parents through the following measures that will be described shortly. Description of measures (reliable and Valid?) The Gross Motor Function Classification System (GMFCS) collects data based on observation of motor skills, and allows classifying a child to one of five levels of mobility corresponding to the proper functional skills. Level I shows the mildest damage, and level V the most severe. The research tool for measuring the quality of life is the WHOQOL-BREF, or World Health Organization Quality of Life BRE. It measures four dimensions: physical health, psychological, social relationships and environment. Validity and reliability tests were not discussed for these measures. Data Collection Data is collected through the measurement tools, GMFCS and WHOQOL-BREF for the control and experimental groups. The measure is basically a survey done in the hospital, where their children are being treated. For the control group, data collection process was not disused. Type of analysis used? Appropriate The t test was used for statistical analysis. Comparison across the measures was applied. These forms of analyses were useful and proper to the study because they establish correlation between the independent and dependent variables and use comparable dimensions. For the experimental group, more than half described their quality of life as good and 40% as not good or bad, while a fourth of parents of healthy children stated that their quality of life as very good. Furthermore, the quality of life of parents of children with cerebral palsy was considerably lower compared with the group of parents of healthy children. Physical health functioning, mental state, social relationships and environment were rated as better for group of parents with healthy children. The largest differences were in the appraisal of enjoyment of life, the importance of life, acceptance of physical appearance and experience of negative feelings. Authors concluded that the parents of children with cerebral palsy see their quality of life as good and are generally satisfied with their health. They have accepted their conditions because their families remained intact and learned to be flexible and resourceful. Future research should focus on how to help these parents cope with their circumstances, so that their quality of life can be improved. Strengths This comparative research design is important to parents and their children with cerebral palsy. First, it identifies the magnitude of understanding the welfare of the caregivers. Their health is critical because they are taking care of children who have special, arguably physically and emotionally demanding needs, not experienced among parents with healthy children. If they are emotionally or physically ill, their children are at risk for further illnesses, even mortality. Second, it shows that cerebral palsy is stressful not only for children, but their parents too. Social and governmental support must be provided to them, including financial and health care support. This research is properly designed to fit its objectives: to know the differences in the quality of life between parents with children who have cerebral palsy, and parents who have healthy children. The survey questions provided the data needed to produce deductions about comparable dimensions. Weaknesses The small sampling and convenience sampling strategy used cannot yield generalizable results. It is possible that other parents have difficulty accepting the fates of their children, and this feeling affects their quality of life. In addition, the survey report can be biased. Parents might be guilty of revealing their life dissatisfaction and anxiety from having children with cerebral palsy. They might not accurately assess their feelings because they do not want to feel sad or stressed. Furthermore, data can be corroborated through using other qualitative data measures, which can confirm the accuracy of initial survey results. The absence of follow-up interviews, for instance, can improve understanding on the long-term effects of having a child with cerebral palsy on their parents. Type of study Location setting Variables Framework Theory Study Design Sample Quantitative Pediatric neurology clinic at Universidade Federal de São Paulo- UNIFESP. Independent Variable: Cerebral palsy Dependent variables: Depression, anxiety and excessive daytime sleepiness (EDS) levels in primary caregivers of children with cerebral palsy (CP) No theoretical framework is found, although the authors briefly explored the literature on the link between depression and anxiety and caregivers of people with chronic diseases. This study is a cross-sectional design with a control group. It compares and contrasts depression, anxiety and excessive daytime sleepiness (EDS) levels in primary caregivers of children with cerebral palsy (CCP) and caregivers of typical children (CTC). This design requires surveys or interviews to complete its data analysis. Authors conducted semi-structured interviews using existing, acceptable measures, which improves the validity of the research because the data-collection tools fit the data needs of this research. Sample Size: 45 caregivers of children with cerebral palsy and 50 caregivers of typical children whose children were aged six months to 12 years Sampling method: Semi-random sampling method. Caregivers of children with diagnosis of CP were randomly chosen at the pediatric neurology clinic at UNIFESP. Fifty-two caregivers of typical children were randomly selected from general population Sample characteristics: They are Portuguese caregivers, where caregivers are defined as those who were essentially accountable for the child’s life decisions, without considering sex or blood relationship. For the CTC, they were workers from the hospital, people who attended stores close by and people on the streets were recruited to participate in the study. Data sources Procedures Data Analysis Results/Findings Recommendations Data collection Measures: Caregivers responded to personal questions, concerning time spent with the child and self-reports regarding depressive and anxiety symptoms with an objective inquiry: “Do you consider yourself depressed or anxious?” Authors also observed and asked caregivers of children with CP about the utility level of their children and divided them into five groups, based on the gross motor function classification system (GMFCS) Description of measures (reliable and Valid?) Excessive daytime sleepiness was measured through the Epworth scale support. This is a validated scale made of eight simple questions about regular daytime activities, measuring participants in different levels based on the chance of sleeping while doing these activities. Beck Depression Inventory (BDI) was used to assess depression. The State-Trait Anxiety Inventory (STAI) was used for determining anxiety symptoms. It can be applied in clinical settings to identify anxiety and to differentiate it from depressive syndromes. It is frequently used in research as a marker of caregiver distress. These tools are valid because they measure depression and anxiety levels, as well as EDS. Every dependent variable has its appropriate measure. Data Collection This study was supported by the ethics committee (Comitê de Ética em Pesquisa from UNIFESP). It follows the ethical standards from the 1964 Declaration of Helsinki. Informed consent was provided before the interviews were conducted. The interviews were done at the pediatric neurology clinic at Universidade Federal de São Paulo- UNIFESP. Type of analysis used? Primary analysis was evaluated using BDI, STAI and the Epworth scale. Secondary analyses concerned determining family factors, socio-economic issues, demographic aspects and child characteristics, which could be correlated with depression, anxiety and Excessive Daytime Sleepiness levels in each group. Authors also correlated demographic characteristics of CCP and CTC. They used the results of every inventory (BDI, STAIT, Epworth) for each group of parents and then compared the results between groups. The functional level of each child (GMFCS) was correlated with the outcomes of depression, anxiety and somnolence levels of the caregivers of children with cerebral palsy group. Chi-square test (X2) (without Yates’ correction) was employed to compare nominal categorical data. Continuous data were compared using student’s t test for independent variables and dependent variables with two variables. In cases with two variables with nonparametric distribution, the Kruskal Wallis test was added. Spearman’s correlation coefficient (r) was determined to evaluate unremitting samples, as well as point-biserial correlation coefficient (rpb) when a dichotomous variable was concerned. Multiple linear regressions and Wald test (Wald X2) were applied. The analysis process was rigorous and aimed to ensure the validity of the data outcomes. Many participants were mothers with low socioeconomic status. Self-perception of anxiety and depressive symptoms of CCP were verified through BDI and STAI. Caregivers of people with chronic disease have problems with sleep disruptions. This study showed surprising high Epworth scores on both groups that were not connected to high scores in depression and anxiety inventories. The connection between EDS and depression or anxiety symptoms was not confirmed. Caregivers of children with CP saw themselves as bad sleepers, but authors did not examine the quality of sleep of their children to see if it affected their caregiver’s quality of sleep too. Future research should concentrate on determining other social/physical/psychological causes of depression, anxiety and Excessive Daytime Sleepiness levels in each group. Authors suggested that CCP who visit a child neurology clinic should be referred to a group of support consisted by psychologists, social workers, psychiatrist and other caregivers. They should predominantly care for CCP with low grade GMFCS of CP that tend to be overlooked because they usually see them as healthy children compared to those ones who have multiple issues. Strengths The research has a strong research design because of the measures it took in analyzing different dimensions of depression, anxiety and Excessive Daytime Sleepiness levels in each group. For instance, Spearman’s correlation coefficient (r) was determined to evaluate unremitting samples, as well as point-biserial correlation coefficient (rpb) when a dichotomous variable was concerned. The authors took pains to establish correlations between variables that are truly related in a direct relationship. The measure tools are valid because they assess depression and anxiety levels, as well as EDS. Every dependent variable has its appropriate measure. The randomization approach for the sampling increases the validity of the research, although it is not entirely seen as a random sampling approach because they had researchers who recruited participants in convenient or pre-targeted locations. Weaknesses The sampling is not large enough to obtain high generalizability. The sampling approach can be randomized further if all hospitals and communities are considered in the recruitment process. Self-report measures can also be biased because the researchers are depending on the memories of the subjects, which can be affected by many factors. The one-time measurement of the dependent variables is not enough to show reliable data. Furthermore, data can be corroborated through using other qualitative data measures, which can prove the accuracy of initial interview results. Type of study Location setting Variables Framework Theory Study Design Sample Quantitative and qualitative The setting is unclear, although the researchers mentioned getting approval from the University of Tennessee Health Science Center and St. Jude Institutional Review Boards (IRB). It is possible that it is a hospital in or around the University mentioned. Independent Variable: Having children with a genetic disorder/disability and the resiliency Dependent variable: Parental stress Controlled variables: Family factors, socio-economic issues, demographic aspects and child characteristics The Resiliency Model of Family Stress and Adjustment (McCubbin & McCubbin, 1993) is the conceptual framework of this research. It studied how parents go through stress and advantages by having a child with a disability. McCubbin and McCubbin started this model with the illness stressor. The family’s vulnerability (V) affects the impact of the illness stressor to the family. The resistance resources are composed of communication, patterns of functioning, and supports. The family’s appraisal (C) of the stressor is comprised of the family’s definition of the seriousness of the illness, its associated hardships, and resistance resources that allow them to cope with their conditions. Families also use problem-solving and coping strategies (PSC) to classify the problem into convenient elements and to achieve emotional stability. Authors used a sequential mixed methods design. This is a valid research design because the mixed methods approach is valuable for research that aims to improve professional practice. It also helps improve the validity of the initial data-collection phase. Sample Size: 45 parents of children diagnosed with autism spectrum disorders (ASD), cerebral palsy (CP), Down Syndrome (DS), or Sickle-cell disease (SCD) participated in eight focus groups, while 25 parents took part in phase II. Sampling method: Convenience sampling. Sample characteristics: Parents of children diagnosed with ASD, CP, DS, or SCD. Parents in the Phase II sample (n = 25) had a mean age of 44.1 years; the majority were African American (n = 12) or White (n = 11). One was Asian American and one was Hispanic. Mothers (n = 21), fathers (n = 3), and one grandmother returned the survey results. Data sources Procedures Data Analysis Results/Findings Recommendations Data collection Measures: Focus group and surveys were done. After the first focus group study, data analysis indicated that parents underwent different levels of parental stress and that was an opportunity to further scrutinize the parents’ stress using a quantitative survey. All participants of the original focus groups were invited to contribute to the second phase of the current study. The quantitative survey was conducted by mail, around 12 months after the analysis of the phase I focus group interviews. Quantitative instruments were made of the Parenting Stress Index-Short Form (PSI-SF) and a short demographic form that included items that were not part of Phase I questions. The PSI-SF has an alpha reliability of .91 and a test-retest reliability of .95. These tools are valid and reliable because they measure the dependent variables. Data Collection Research study packets were sent to all but one of the original focus group participants. A follow-up letter was mailed after one month for those who did not initially respond. Surveys were conducted when the parents approved the phase II of the study. Qualitative and quantitative data outcomes were integrated through the mixed methods analysis. Authors used the audio taped discussions from the focus groups and imported them into NVivo7. Survey data collected during the second phase were put into Statistical Package for the Social Sciences (SPSS) Version 17.0 for quantitative data analysis. These measures are valid because they can identify the relationship between the independent and dependent variables. The findings were fitting to the adjustment phase of the model. Parents in the stressed depicted maladjustment experience such as family susceptibility, closed communication, pessimistic appraisals of their children’s situation, and poor support during the original focus groups. The combination of stressors, downbeat appraisals, and poor resistance resources lead to higher stress among participants. The study indicates that high risk for stress is not connected to diagnosis; then, assistance given to families by healthcare providers and nurses should not center only on the child’s particular diagnosis but also include an appraisal of parental stress. Nurses should have sufficient tools to evaluate other family stressors (e.g., family vulnerability), views and appraisals of the illness or disability, resources and supports, and the ability to manage and solve problems. Strengths This research has a strong research design because of its mixed-method approach. The results of the focus group are verified with another survey. It also had a longitudinal component because the second phase of the study was done a year later. These measures allowed researchers to measure the integrity of the data, where changes can be seen across twelve months. Furthermore, a mixed-methods research maximizes the strengths of both qualitative and quantitative research designs. These mixed methods enhance the validity of the research, as well as its reliability. The researchers also took great measures to control variables that could affect correlations. Weaknesses The sampling is too small, which affects generalizability. The random approach to sampling is not randomized across the state, which decreases the findings’ external validity. In addition, by combining different types of illnesses, it is hard to determine which is more stressful or if they share similar stressors. Other factors are not considered too, such as religion/faith and access to other support groups. Data sources Procedures Data Analysis Results/Findings Recommendations Data collection Measures: Description of measures (reliable and Valid?) Data Collection Type of analysis used? Appropriate Future research Strengths Weaknesses Read More