Quality of life in children and adolescents with congenital heart disease. A new challenge for parents, professionals and community

The Quality of life is currently a major topic discussed in our society. The World Health Organization (WHO) has been developing a unifying and transcultural definition of QOL. They considered it as 'the individual's perception of his or her position in life, within the cultural context and value system he or she lives in, and in relation to his or her goals, expectations, parameters and social relations. It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, level of independence, social relationships and their relationship to salient features of their environment (WHOQOL, 1997, p. 1). Congenital heart disease is the most prevalent congenital disease in Portugal. Despite the advances in cardiac treatment and an early correct diagnosis that could increase the survival of children with congenital heart disease, this condition influences the quality of life of children, adolescents and their parents. Knowing the perception of quality of life could help healthcare professionals, nurses in particular, providing suited care to the needs of these families, establishing priorities in their interventions, sensing predictors of a poor quality of life, promoting adherence to treatment and boosting compliance with treatment, and fostering greater satisfaction for these children, adolescents and their parents. Purpose As part of broader research and with the awareness that the chronic conditions could impact the quality of life and considering that all advances on treating congenital cardiac diseases we have defined this main objective: To determine the quality of life in children and adolescents with congenital heart disease (CHD) and the perception of their parents, as well as factors that influence it. Methods It is a quantitative, descriptive and correlational research. The data collection tool was a questionnaire, which consisted of four parts: socio-demographic and educational characteristics, clinical characteristics, and quality of life, obtained using the Pediatric Cardiac Quality of Life Inventory - PCQLI - (Marino, Tomlinson, Wernovsky, Drotar , Newburger, Mahony et al., 2010) translated into Portuguese. Data collection took place between February and July 2014, in compliance with ethical research guidelines. The sample comprised 59 children, 59 parents of children, 80 adolescents and 80 parents of adolescents. Results The results indicated that children, adolescents, and their parents have high level of perceived health. The results are similar in all groups: children and parents and adolescents and parents. In the group of children, we observed the classification of "Good" in 66.10%, followed by the "Very Good" at 18.65% and "fair" in 15.25% of cases. The parents of the children responded in about half the cases that the health of their children was "good" (50.85%), "very good" in 30.51% "fair" in 11.86% and "Excellent "in 6.78%. In turn, the group of adolescents can be seen that 46.25% rate their health as "good", 32.50% as "very good", 16.25% as "Average" and 5% as "Excellent". Parents of teenagers classify the health of their children mostly as "good" in 42.50%, 31.25% as "very good", 20% as "fair" and 6.25% as "excellent". To point out that none of the respondents pointed out the option of a health status "Bad". About the quality of life, in general the results indicated that children, adolescents and their parents have high levels of quality of life, and that perceptions of parents and children are similar. Only in the children's group (8 to 12 years old), was no influence of socio-demographic, school or clinical variables on quality of life observed. For adolescents (13 to 18 years old), school, special education, school retention, the age of diagnosis of congenital heart disease, cardiac catheterization and surgical intervention influenced their quality of life. Perception of quality of life of parents of children and of adolescents was influenced by socio-demographic and clinical variables. The results partly agree with the literature in this field. About the influence of some variables: - The perception of quality of life expressed by children and adolescents with congenital heart disease and parents are related, with statistical significance. - There were no statistically significant relationships between the quality of life of children and adolescents and their age, gender or socioeconomic status. - Adolescents differ statistically significant between their quality of life and their education, the frequency of special education and the existence of grade retention. The severity of heart disease, the number of cardiac catheterizations or surgery and the presence of other health disorders are unrelated to the quality of life of children and adolescents. - Adolescents revealed that the level of quality of life is influenced by the age of diagnosis of CHD by cardiac catheterization and surgery. - For parents of children and adolescents gender and their education don´t influence their perception of quality of life. Only the socioeconomic status of parents of teens has statistically significant difference to quality of life. - Parents of children and adolescents do not show statistically significant relationship between the perceived level of quality of life and severity of disease, age at diagnosis, the number of surgical interventions and the existence of other health disorders. - There is a relationship of statistical significance between cardiac catheterization and the perceived quality of life by parents of adolescents; between the number of cardiac catheterizations and the perception of quality of life of parents of children; and between performing surgery and the perception of parents of children and adolescents. Conclusion To analyze the quality of life of children and adolescents with CHD must be a key focus of attention in caring for this population, allowing the identification of individual differences, interests, preferences, and prevent potential problems. The knowledge acquired along with clinical experience contributes to improve the quality of life of children and families, facilitating their growth, psycho-emotional development and social integration. Nevertheless, the reading and interpretation of these results must be prudent and cautious, there are limitations to this research, including: the use of a range of specific quality of life for the Congenital heart disease in children, adolescents, and parents but whose validation process could not be completed in this study; the low prevalence of severe conditions in our sample; the absence of national studies to enable comparison with the results obtained. We intend to continue the process of validation of instrument and enlarge the research to Lisbon and Oporto, other major centers where the cardiac conditions can be treated

Community Engagement in Ireland's Developmental Welfare State: a study of the life cycle approach

The idea that people matter in modern democracies, often referred to as 'civic engagement' is recognised at the highest international level (United Nations 2008: 9). Civic or community engagement is essential to how budgets are decided, policy is developed and public services delivered. Significantly, community engagement is crucial in developing policy for sustained economic and social development. In Ireland the idea of the Developmental Welfare State (DWS) is based on the premise that the social policy system should support citizens so as to reach their full potential. Such a system comprises three overlapping elements: tax and welfare transfer, the provision of services and activist initiatives (National Economic and Social Council, 2005: ix-xviii). Civil Society Organisations have been challenged to 'operationalise the DWS' using a 'life cycle framework' as part of Ireland's corporatist partnership model (Department of Taoiseach, 2006: 40).

Community Life and Housing in Rural Nebraska: 2005 Nebraska Rural Poll Results

Many rural communities are experiencing population decline. However, rural residents have continued to show a strong attachment to their communities. How do rural Nebraskans feel about their community? Are they satisfied with the services provided? Do they own their home? What is the condition of their home? This report details 2,851 responses to the 2005 Nebraska Rural Poll, the tenth annual effort to understand rural Nebraskans’ perceptions. Respondents were asked a series of questions about their community and housing. Trends for some of these questions are examined by comparing data from the nine previous polls to this year’s results. For all questions, comparisons are made among different respondent subgroups, that is, comparisons by age, occupation, region, etc. Based on these analyses, some key findings emerged: Rural Nebraskans’ views of the change in their community are similar to those expressed last year. This year, 28 percent believe their community has changed for the better, compared to 26 percent last year. And, in 2005, only 20 percent think their community has changed for the worse, compared to 22 percent last year. The proportion of expected movers who plan to leave the state decreased this year. Last year, 56 percent of the persons planning to move from their community expected to leave the state. That proportion decreased to 47 percent this year. Rural Nebraskans living in or near the largest communities are more likely than persons living in or near the smaller communities to say their community has changed for the better. Thirty-nine percent of persons living in or near communities with populations of 10,000 or more believe their community has changed for the better during the past year, but only 15 percent of persons living in or near communities with less than 500 people share this opinion. The community services and amenities that rural Nebraskans are most dissatisfied with include: entertainment, retail shopping and restaurants. At least one-third of rural Nebraskans express dissatisfaction with these three services. They are most satisfied with parks and recreation, library services, basic medical care services, highways and bridges, and education (K - 12). At least one-half of rural Nebraskans are satisfied with the following items in their community: appearance of residential areas (66%), crime control (61%), maintenance of sidewalks and public areas (57%) and noise (54%). Rural Nebraskans generally have positive views about their community. Sixty percent agree that their community is an ideal place to live and 52 percent say their community has good business leaders. Rural Nebraskans have mixed opinions about the future of their community. Fortyfour percent agree that their community’s future looks bright, but 42 percent disagree with this statement. Fourteen percent have no opinion. Rural Nebraskans living in or near the larger communities are more likely than residents of the smaller communities to think their community’s future looks bright. Fifty-nine percent of persons living in or near communities with populations of 10,000 or more agree with this statement, compared to only 25 percent of residents living in or near communities with less than 500 people. Further, 61 percent of the residents of the smallest communities disagree with this statement, compared to only 28 percent of the residents of the largest communities. Over three-quarters of rural Nebraskans disagree that younger residents of their community tend to stay there after completing high school. Seventy-six percent disagree with this statement, 16 percent have no opinion and eight percent agree that younger residents stay after completing high school. When comparing responses by age, younger persons are more likely than older persons to agree that younger residents stay in their community after high school. Sixteen percent of persons age 19 to 29 agree with this statement, compared to only six percent of persons age 50 to 64. Younger persons are more likely than older persons to be planning to move from their community next year. Fifteen percent of persons between the ages of 19 and 29 are planning to move next year, compared to only two percent of persons age 65 and older. An additional 17 percent of the younger respondents indicate they are uncertain if they plan to move. Most rural Nebraskans own their home. Eighty-four percent of rural Nebraskans own their home. Older persons are more likely than younger persons to own their home. Eighty-eight percent of persons over the age of 50 own their home, compared to only 52 percent of persons age 19 to 29. Housing in rural Nebraska has an average age of 50 years. Twenty-four percent of residences were built before 1930. Another 24 percent were built between 1930 and 1959. Twenty-nine percent were built between 1960 and 1979 and the remaining 24 percent were built in 1980 or later. The housing stock in smaller communities is older than the housing located in larger communities. Over one-third (35%) of the residences in communities with less than 1,000 people were built before 1930. Only 12 percent of the homes in communities with populations of 10,000 or more were built in this time period. Most rural Nebraskans appear satisfied with their home. Only 24 percent say the current size of their home does not meet their needs. The same proportion (24%) say their home is in need of major repairs. Thirty-eight percent agree that their home needs a lot of routine maintenance, but 87 percent like the location (neighborhood) of their home. One-third of rural Nebraskans living in or near the smallest communities say their home is in need of major repairs. Only 19 percent of persons living in or near communities with populations of 5,000 or more are facing this problem. Home ownership is very important to most rural Nebraskans. Eighty-two percent believe it is very important to own their home. An additional 12 percent say it is somewhat important and six percent say it is not at all important. However, persons who do not currently own their home do not feel it is important for them to do so. Only 32 percent of renters say it is very important to own their home, compared to 91 percent of home owners. And, 35 percent of renters say it is not at all important to own their home.

Establishment of the bacterial fecal community during the first month of life in Brazilian newborns

OBJECTIVE: The establishment of the intestinal microbiota in newborns is a critical period with possible long-term consequences for human health. In this research, the development of the fecal microbiota of a group of exclusively breastfed neonates living in low socio-economic conditions in the city of Sao Paulo, Brazil, during the first month of life, was studied. METHODS: Fecal samples were collected from ten neonates on the second, seventh, and 30th days after birth. One of the neonates underwent antibiotic therapy. Molecular techniques were used for analysis; DNA was extracted from the samples, and 16S rRNA libraries were sequenced and phylogenetically analyzed after construction. A real-time polymerase chain reaction (PCR) was performed on the samples taken from the 30th day to amplify DNA from Bifidobacterium sp. RESULTS: The primary phylogenetic groups identified in the samples were Escherichia and Clostridium. Staphylococcus was identified at a low rate. Bifidobacterium sp. was detected in all of the samples collected on the 30th day. In the child who received antibiotics, a reduction in anaerobes and Escherichia, which was associated with an overgrowth of Klebsiella, was observed throughout the experimental period. CONCLUSION: The observed pattern of Escherichia predominance and reduced Staphylococcus colonization is in contrast with the patterns observed in neonates living in developed countries.

The impact of asymptomatic vertebral fractures on quality of life in older community-dwelling women: the Sao Paulo Ageing & Health Study

OBJECTIVES: The aim of this study was to investigate the impact of asymptomatic vertebral fractures on the quality of life in older women as part of the Sao Paulo Ageing & Health Study. METHODS: This study was a cross-sectional study with a random sample of 180 women 65 years of age or older with or without vertebral fractures. The Quality of Life Questionnaire of the European Foundation for Osteoporosis was administered to all subjects. Anthropometric data were obtained by physical examination, and the body mass index was calculated. Lateral thoracic and lumbar spine X-ray scans were obtained to identify asymptomatic vertebral fractures using a semi-quantitative method. RESULTS: Women with asymptomatic vertebral fractures had lower total scores [61.4(15.3) vs. 67.1(14.2), p = 0.03] and worse physical function domain scores [69.5(20.1) vs. 77.3(17.1), p = 0.02] for the Quality of Life Questionnaire of the European Foundation for Osteoporosis compared with women without fractures. The total score of this questionnaire was also worse in women classified as obese than in women classified as overweight or normal. High physical activity was related to a better total score for this questionnaire (p = 0.01). Likewise, lower physical function scores were observed in women with higher body mass index values (p < 0.05) and lower physical activity levels (p < 0.05). Generalized linear models with gamma distributions and logarithmic link functions, adjusted for age, showed that lower total scores and physical function domain scores for the Quality of Life Questionnaire of the European Foundation for Osteoporosis were related to a high body mass index, lower physical activity, and the presence of vertebral fractures (p < 0.05). CONCLUSION: Vertebral fractures are associated with decreased quality of life mainly physical functioning in older community-dwelling women regardless of age, body mass index, and physical activity. Therefore, the results highlight the importance of preventing and controlling asymptomatic vertebral fractures to reduce their impact on quality of life among older women.

Evaluation of quality of life in a palliative care context: an integrative literature review

The use of scales that have been validated and standardized for different cultures is very useful for identifying demands in the field of Palliative Care and implementing the most appropriate care. This integrative literature review focuses on instruments assessing the Quality of Life of patients under Palliative Care through a journal search in electronic databases. The study consisted of 49 papers identified in Medline/PubMed, of which 18 met the inclusion criteria previously defined. Information concerning the selected studies is presented and later categorized, with a greater emphasis on the analysis of the psychometric properties of validations of the Palliative Outcome Scale, conducted in three countries. This review enabled the identification of instruments already developed and validated for different cultures, increasing the possibility of knowledge in the field.

The impact of asymptomatic vertebral fractures on quality of life in older community-dwelling women: the São Paulo Ageing & Health Study

OBJECTIVES: The aim of this study was to investigate the impact of asymptomatic vertebral fractures on the quality of life in older women as part of the Sao Paulo Ageing & Health Study. METHODS: This study was a cross-sectional study with a random sample of 180 women 65 years of age or older with or without vertebral fractures. The Quality of Life Questionnaire of the European Foundation for Osteoporosis was administered to all subjects. Anthropometric data were obtained by physical examination, and the body mass index was calculated. Lateral thoracic and lumbar spine X-ray scans were obtained to identify asymptomatic vertebral fractures using a semi-quantitative method. RESULTS: Women with asymptomatic vertebral fractures had lower total scores [61.4(15.3) vs. 67.1(14.2), p = 0.03] and worse physical function domain scores [69.5(20.1) vs. 77.3(17.1), p = 0.02] for the Quality of Life Questionnaire of the European Foundation for Osteoporosis compared with women without fractures. The total score of this questionnaire was also worse in women classified as obese than in women classified as overweight or normal. High physical activity was related to a better total score for this questionnaire (p = 0.01). Likewise, lower physical function scores were observed in women with higher body mass index values (p<0.05) and lower physical activity levels (p,0.05). Generalized linear models with gamma distributions and logarithmic link functions, adjusted for age, showed that lower total scores and physical function domain scores for the Quality of Life Questionnaire of the European Foundation for Osteoporosis were related to a high body mass index, lower physical activity, and the presence of vertebral fractures (p<0.05). CONCLUSION: Vertebral fractures are associated with decreased quality of life mainly physical functioning in older community-dwelling women regardless of age, body mass index, and physical activity. Therefore, the results highlight the importance of preventing and controlling asymptomatic vertebral fractures to reduce their impact on quality of life among older women.

Interrelationships between the structural and functional aspects of social relationships, comorbidity and health related quality of life in breast cancer survivors

It is widely acknowledged in theoretical and empirical literature that social relationships, comprising of structural measures (social networks) and functional measures (perceived social support) have an undeniable effect on health outcomes. However, the actual mechanism of this effect has yet to be clearly understood or explicated. In addition, comorbidity is found to adversely affect social relationships and health related quality of life (a valued outcome measure in cancer patients and survivors). ^ This cross sectional study uses selected baseline data (N=3088) from the Women's Healthy Eating and Living (WHEL) study. Lisrel 8.72 was used for the latent variable structural equation modeling. Due to the ordinal nature of the data, Weighted Least Squares (WLS) method of estimation using Asymptotic Distribution Free covariance matrices was chosen for this analysis. The primary exogenous predictor variables are Social Networks and Comorbidity; Perceived Social Support is the endogenous predictor variable. Three dimensions of HRQoL, physical, mental and satisfaction with current quality of life were the outcome variables. ^ This study hypothesizes and tests the mechanism and pathways between comorbidity, social relationships and HRQoL using latent variable structural equation modeling. After testing the measurement models of social networks and perceived social support, a structural model hypothesizing associations between the latent exogenous and endogenous variables was tested. The results of the study after listwise deletion (N=2131) mostly confirmed the hypothesized relationships (TLI, CFI >0.95, RMSEA = 0.05, p=0.15). Comorbidity was adversely associated with all three HRQoL outcomes. Strong ties were negatively associated with perceived social support; social network had a strong positive association with perceived social support, which served as a mediator between social networks and HRQoL. Mental health quality of life was the most adversely affected by the predictor variables. ^ This study is a preliminary look at the integration of structural and functional measures of social relationships, comorbidity and three HRQoL indicators using LVSEM. Developing stronger social networks and forming supportive relationships is beneficial for health outcomes such as HRQoL of cancer survivors. Thus, the medical community treating cancer survivors as well as the survivor's social networks need to be informed and cognizant of these possible relationships. ^

Assessing and applying evidence-based interventions at the community level in India as a model policy to reduce neonatal mortality rates in Nigeria

Background. The United Nations' Millennium Development Goal (MDG) 4 aims for a two-thirds reduction in death rates for children under the age of five by 2015. The greatest risk of death is in the first week of life, yet most of these deaths can be prevented by such simple interventions as improved hygiene, exclusive breastfeeding, and thermal care. The percentage of deaths in Nigeria that occur in the first month of life make up 28% of all deaths under five years, a statistic that has remained unchanged despite various child health policies. This paper will address the challenges of reducing the neonatal mortality rate in Nigeria by examining the literature regarding efficacy of home-based, newborn care interventions and policies that have been implemented successfully in India. ^ Methods. I compared similarities and differences between India and Nigeria using qualitative descriptions and available quantitative data of various health indicators. The analysis included identifying policy-related factors and community approaches contributing to India's newborn survival rates. Databases and reference lists of articles were searched for randomized controlled trials of community health worker interventions shown to reduce neonatal mortality rates. ^ Results. While it appears that Nigeria spends more money than India on health per capita ($136 vs. $132, respectively) and as percent GDP (5.8% vs. 4.2%, respectively), it still lags behind India in its neonatal, infant, and under five mortality rates (40 vs. 32 deaths/1000 live births, 88 vs. 48 deaths/1000 live births, 143 vs. 63 deaths/1000 live births, respectively). Both countries have comparably low numbers of healthcare providers. Unlike their counterparts in Nigeria, Indian community health workers receive training on how to deliver postnatal care in the home setting and are monetarily compensated. Gender-related power differences still play a role in the societal structure of both countries. A search of randomized controlled trials of home-based newborn care strategies yielded three relevant articles. Community health workers trained to educate mothers and provide a preventive package of interventions involving clean cord care, thermal care, breastfeeding promotion, and danger sign recognition during multiple postnatal visits in rural India, Bangladesh, and Pakistan reduced neonatal mortality rates by 54%, 34%, and 15–20%, respectively. ^ Conclusion. Access to advanced technology is not necessary to reduce neonatal mortality rates in resource-limited countries. To address the urgency of neonatal mortality, countries with weak health systems need to start at the community level and invest in cost-effective, evidence-based newborn care interventions that utilize available human resources. While more randomized controlled studies are urgently needed, the current available evidence of models of postnatal care provision demonstrates that home-based care and health education provided by community health workers can reduce neonatal mortality rates in the immediate future.^

PubDNA Finder in a Nutshell. Searching the Life Sciences Literature with Sequences of Nucleic Acids

Biomedical researchers and clinicians working with molecular technologies in routine clinical practice often need to review the available literature to gather information regarding specific sequences of nucleic acids. This includes, for instance, finding articles related to a concrete DNA sequence, or identifying empirically-validated primer/probe sequences to evaluate the presence of different micro-organisms. Unfortunately, these hard and time-consuming tasks often need to be manually performed by researchers themselves since no publicly available biomedical literature search engine, e.g. PubMed, PubMed Central (PMC), etc., provides the required search functionalities. In this article, we describe PubDNA Finder, a web service that enables users to perform advanced searches on PubMed Central-indexed full text articles with sequences of nucleic acids

Life--in Long Beach, a survey of community welfare services and needs ...

Mode of access: Internet.

Life in Elizabethan days, a picture of a typical English community at the end of the sixteenth century,

Mode of access: Internet.