Children With Sickle Cell Disease - Research Paper Example

Quality of life of children with sickle cell disease Caring for a child suffering from sickle cell disease needs extra demand on parents both psychologically and practically, which may influence their quality of life. This kind of disease is associated with communities with low socio-economic status. The main objective of the study was to evaluate the quality of life of caregivers of children suffering from sickle cell disease. A total of 700 healthy Dutch females and female caregivers of healthy children with the same ethnic background and socio-economic status were interviewed to compare their quality of life. The quality of life was measured with the TNO-AZL Adult Quality of Life questionnaire. The groups were compared by the Mann-Whitney U test. The study was carried at 95% confidence interval. The results indicated that patients with sickle disease had a significantly lower quality of life on all subscales as compared to the Dutch norm population. The abstract of the study is a complete overhaul. It gives clear and more defined information of what to expect and what the study is all about. However, the objective of the study is not widely stated considering the fact that it is not mentioned anywhere else in the study apart from the abstract. Strengths The study has a strong research design. The data are well computed and analyzed using more powerful statistical tools. This makes the results and findings valid. Weakness There are several weaknesses of the study. The population of SCD caregivers that were studied had low SES. This could be different when a similar study was done in a different country. The cross-sectional study design does not allow for analysis of predictors such as areas where caretakers are at the highest risk of a low QoL considering the fact that lower QoL in the group of SCD caregivers has already been identified. Strengths The study has a strong research design. The data are well computed and analyzed using more powerful statistical tools. This makes the results and findings valid. Weakness There are several weaknesses of the study. The population of SCD caregivers that were studied had low SES. This could be different when a similar study was done in a different country. The cross-sectional study design does not allow for analysis of predictors such as areas where caretakers are at the highest risk of a low QoL considering the fact that lower QoL in the group of SCD caregivers has already been identified. Data sources Procedure Data analysis Results/findings Recommendations Both primary and secondary data sources were used for the study. This makes the data and hence the results reliable and viable. Data were collected between May and October 2006. The questionnaires were sent to the respondents and the respondents were then asked to send the questionnaires through mail. Questionnaires for the control group were distributed among school children at two local primary school. Norm data for the TAAQoL from a Dutch references population over 15 years old were made available. The information was to be obtained from population born in the Netherland, or a Western country or born in a non-western country. The procedure of the study certainly fits this kind of study. However, the procedure used for collecting data did not give a sure way of valid data. Sending the questionnaire and hoping that the respondents will send them back was not a valid idea. This is because there will be uncertainty in the amount of response and some questions may be best suited for direct interview. The statistical package for social sciences Version 12 was used for the analysis. Independent T-test was used to test normally distributed data. While Mann-Whitney U test was used to test that were not normally distributed. The statistical analysis was well done during the study. Virtually all the tools of analysis were used that makes the analyzed results valid. The results indicated that majority of SCD caregivers originated from non-western countries. There was no statistical significance between the caregivers of the children wit SCD ad the SES control group (p=0.105), marital status (p=0.492) and educational level (p=0.843). Caregivers of SCD patients had a lower QoL on the subscales depressive moods, vitality, daily activities, happiness, sleeping and cognitive functioning after comparison of the median difference. The results matched the variables that were in the question. However, there was no clear link between the literature and the results; this was caused by the absence of theoretical literature. But overall, following the objective of the study, the results made sense. There is need to include caregivers from minor ethnic background and disabled groups in similar studies as this will ensure a more comprehensive results. ARTICLE 2 Maternal parenting stress and its correlates in families with a young child with cerebral palsy- By: S. Glenn, C. Cunningham, H. Poole, D. Reeves and M. Weindling. Citation Type of study Location setting Variables Framework theory Study design Sample . the study is qualitative in nature Faculty of Health and Applied Social Sciences, Liverpool John Moores University There were no independent or dependent variables as the study were purely a descriptive type of study. There is well defined literature concerning the correlation that exists between parents of children of with disabilities and high levels of stress. The study also gives comprehensive literature on previous results that have focused on stress in parents of children with cerebral palsy (CP). However, no theoretical literature for the study. 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. The sample consisted of 80children with CP and their mothers. Children were referred from 11 child development centers in North-west of England or adjacent to Liverpool. Numbers of maternal and paternal social class were: class I-2 and 3; class II-12 and 18; class III-32 and 28; class IV and V-34 and 31 respectively. Considering the number of children suffering from cerebral disability, this sample size was not good enough to represent the whole population. This is because as you increase the sample size, the accuracy and the reliability also increases. Data sources Procedure Data analysis Results/findings Children data were obtained from 11 development centers in the north-west of England and Merseyside. 80 mothers and children took part in the study. Mothers completed PSI (Parenting Stress Index) and the measures of family variables such as: family cohesions, family support, adaptability, family needs, coping strategies and locus of control. On the other hand, children were assessed using the Gross Motor Function measure and Griffiths Scales. The child’s home environment was assessed using Home Observation for Measuring the environment. The respondents were first informed using a telephone call after which questionnaires were sent to the family homes. An independent assessor then visited the home and assessed the child, before competing the home and scale and finally collecting the completed questionnaire. The procedure for collecting data was very flexible and detailed. This ensured that the validity of the data is not compromised. The presence of an independent assessor was just perfect because sometimes the parents could give biased information. 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 14.0 for quantitative data analysis. Test included Cronbach’s alpha, Pearson’s product moment correlations, cluster analysis and multiple regressions. After proper screening for accuracy of entry, missing data noted was dealt with for the scale through imputing means for the individual on the scale. The screening of the data adding much more strength to the data accuracy. This is because a more accurate data is the followed by more accurate results. However, more statistical analysis methods could have been used to add to the accuracy of the results. Mothers had higher mean total PSI scores than the means for the typical sample. Of those interviewed, 43% had a total PSI scores above the threshold for clinical assessment. According to the results, high stress items were isolation and poor spouse support, restriction, and having a child who was perceived as less adaptable and more demanding. The regression analysis on its part indicated that the factors most strongly relating to parenting stress were high needs, cognitive impairment in the child and adaptability. 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. Strengths The study confirmed the individuality of families. Through the study, we can ascertain that individual characteristics of coping and feeling in control are associated with variations in amount of stress experienced in parenting a child suffering from cerebral palsy. Weakness The sample size is too small, which affects the generalization to the population. 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. References Glenn, S., Cunningham, C., Poole, H., Reeves. D. and Weindling. M. (2008). Maternal Parenting Stress and Its Correlates in Families with a Young Child with Cerebral Palsy. Blackwell Publishing Ltd, London Xandra et.al., (2008). Quality Of Life of Female Caregivers of Children with Sickle Cell Disease: A Survey. 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