Asthma beliefs among mothers and children from different ethnic origins living in Amsterdam, the Netherlands.

BACKGROUND: Doctors and patients hold varying beliefs concerning illness and treatment. Patients' and families' explanatory models (EMs) vary according to personality and sociocultural factors. In a multi-ethnic society, it is becoming increasingly significant that doctors understand the different beliefs of their patients in order to improve patient/doctor communication as well as patient adherence to treatment. METHODS: Twelve focus groups were formed, consisting of 40 children diagnosed with asthma, as well as 28 mothers of these children. These groups included mothers and children of different ethnicities who were living in Amsterdam, the Netherlands. In order to understand the beliefs that both mothers and children hold regarding asthma and its treatment, the explanatory models were analysed and compared. RESULTS: Study findings show that mothers and children, regardless of ethnicity and age, have their own EMs. Overall, there is a great deal of uncertainty related to the causes, consequences, problems, and symptoms of asthma and its treatment. It also seems that many concerns and feelings of discomfort are the result of lack of knowledge. For instance, the fact that asthma is not seen as a chronic disease requiring daily intake of an inhaled corticosteroid, but rather as an acute phenomenon triggered by various factors, may be very relevant for clinical practice. This particular belief might suggest an explanation for non-adherent behaviour. CONCLUSION: A thorough understanding of the mothers' and children's beliefs regarding the illness and its treatment is an important aspect in the management of asthma. Gaining an understanding of these beliefs will provide a foundation for a solid clinician-patient/family partnership in asthma care. Although ethnic differences were observed, the similarities between the mothers' and children's beliefs in this multi-ethnic population were striking. In particular, a common belief is that asthma is considered an acute rather than a chronic condition. In addition, there is a lack of knowledge about the course and the self-management of asthma. Health care providers should be aware of these commonly held beliefs, and this information could be shared in educational programs.

Health-related quality of life of very preterm infants at 1 year of age after two developmental care-based interventions.

BACKGROUND: In the context of a growing interest in developmental care (DC) this study explores the effect of the basic elements of DC and the additional effect of the individual approach of the Newborn Individualized Developmental Care and Assessment Program (NIDCAP) on the health-related quality of life (HRQoL) of very preterm infants at 1 year of age. The basic elements of DC in this study were defined as the use of standardized nests and incubator covers whose protective characteristics were hypothesized to have a positive effect on the infant's HRQoL. The individualized approach of the NIDCAP was thought to further increase HRQoL. METHODS: Very preterm (

[Overweight and obesity in preschool children (0-4 years): behaviour and views of parents]. / Overgewicht en obesitas bij jonge kinderen (0-4 jaar): gedrag en opvattingen van ouders.

OBJECTIVE: Description of unhealthy behaviour and views regarding nutrition, physical exercise and education in families with young children, in relation to specific groups with a high risk of overweight. DESIGN: Cross-sectional study. METHOD: In wellbaby clinics for infants and toddlers in various sites in The Netherlands 534 parents were requested to fill in questionnaires on nutrition, physical exercise and education. Enquiry into background characteristics took place and several hypotheses were tested. Using a bivariate and multivariate analysis each hypothesis was examined with regard to linkage of the answers to specific high-risk groups. RESULTS: 73% (390 parents) responded. Overweight was found in 15% of the 2-4-year-olds, this included 3.7% with obesity. Relatively often, parents held views and showed behaviour characteristic of an unhealthy lifestyle for young children. For example, approximately 1 out of 7 families was not used to having breakfast. 43% of the respondents considered sweetened milk products approprite substitutes for milk and 39% of the children always had soft drinks at their disposal. One fifth of the parents indicated that they did not have enough time to go out with their child. Approximately 1 out of 10 toddlers aged 2-4 years had a TV in their own room; 22% were allowed to determine whether they wanted to watch TV or not and 9% were allowed to decide how long they watched. Such specific high-risk behaviour was seen in particular in families with non-western mothers, mothers with a low level of education or mothers living on social security. Regular use of child care or a nursery seemed to have some protective effect. CONCLUSION: In families with children aged 0-4 years, behaviour patterns related to overweight at a later age were frequently observed. In view of the increased incidence of overweight and obesity in young children, initiation of research aimed at optimisation of education is warranted, which should include special attention for the behaviour of parents with regard to 5 spearheads: breast-feeding, more outside play and more physical exercise, a regular wholesome breakfast, less consumption of sweetened drinks and less TV and computer use. Implementation of interventions in young age groups is able to prevent the development of unhealthy lifestyle and childrearing styles.

Parental experiences during the first period at the neonatal unit after two developmental care interventions.

AIM: Developmental care has gained increased attention in the individualized care for preterm infants. This study was designed to explore the effect of a basic form of developmental care and the more extended Newborn Individualized Developmental Care and Assessment Program (NIDCAP) on parental stress, confidence and perceived nursing support. METHODS: Two consecutive randomized controlled trials (RCT's) comparing (1) standard care versus basic developmental care (standardized nests and incubator covers) (n = 133) and (2) basic developmental care versus NIDCAP, including behavioural observations (n = 150). Parents of infants born <32 weeks gestational age (GA) received questionnaires after the first week of admission in the neonatal unit and on average these 2 weeks after the birth of their infant. RESULTS: No significant differences were found in confidence, perceived nursing support or parental stress. The difference in parental stress between mother and father was less in the NIDCAP intervention group (p = .03), although not significant. CONCLUSION: Both basic developmental care and NIDCAP had little effect on parental experiences during the first period at the neonatal unit. As a result of increased paternal stress, the NIDCAP intervention tended to decrease the difference in parental stress levels of fathers and mothers, possibly because of the increased involvement of father during the NIDCAP intervention.

Health-related quality of life in children with asthma from different ethnic origins.

This study aimed to identify and explain differences in health-related quality of life (QoL) between immigrant and non-immigrant children with asthma. In 274 children (7-17 years of age) generic and asthma-related QoL were assessed. The association between ethnicity and QoL was studied in linear regression model analyses. For the asthma-related QoL, unadjusted analyses showed significant ethnic differences. The non-immigrant children had the highest scores, which implies a better QoL. After adjusting for asthma control and socioeconomic status (SES), ethnic differences disappeared. These results suggest that immigrant children have a similar QoL to that of non-immigrant children from a comparable SES, when their asthma is under control.

Predictors of asthma control in children from different ethnic origins living in Amsterdam.

To identify factors associated with asthma control in a multi-ethnic paediatric population. We interviewed 278 children with paediatrician diagnosed asthma (aged 7-17 years) and one of their parents. Asthma control was assessed with the Asthma Control Questionnaire (ACQ). Detailed information about sociodemographic variables, asthma medication, knowledge of asthma, inhalation technique and environmental factors were collected. Turkish and Moroccan parents were interviewed in their language of choice. Logistic regression analyses were used to identify correlates of asthma control. Of the 278 children, 85 (30.6%) were Dutch, 84 (30.2%) were Moroccan, 58 (20.9%) were Turkish and 51 (18.3%) were Surinamese. Overall, almost 60% had a status of well-controlled asthma, as indicated by the ACQ. Only 51 of the 142 (35.9%) Moroccan and Turkish parents had a good comprehension of the Dutch language. In logistic regression analyses the risk of having uncontrolled asthma was significantly higher among Surinamese children (OR 2.3; 95% CI 1.06-4.83), respondents with insufficient comprehension of the Dutch language (OR 2.3; 95% CI 1.08-4.78), children using woollen blankets (OR 9.8; 95% CI 1.52-63.42), and significantly lower among male (OR 0.5; 95% CI 0.31-0.91) and non-daily users of inhaled corticosteroids (OR 0.6; 95% CI 0.38-1.07). In conclusion, ethnicity as well as insufficient comprehension of the Dutch language appeared to be independent risk factors for uncontrolled asthma. Special attention should be given to children from immigrants groups for example by calling in an interpreter by physicians when comprehension is insufficient.

The use of focus groups in the development of the KIDSCREEN HRQL questionnaire.

There is increasing interest in the public health sector in the health-related quality of life (HRQL) of healthy children. However, most HRQL instruments are developed for children with a chronic illness. In addition, existing questionnaires are mostly based on expert opinion about what constitutes HRQL and the opinions and views of healthy children are seldom included. In the European project KIDSCREEN, a generic questionnaire was developed for children between the ages of 8 and 18 on the basis of children's opinions about what constitutes HRQL. Focus group discussions were organised in six European countries to explore the HRQL as perceived by children. There were six groups in each country, stratified by gender and age. The age groups were 8-9 years, 12-13 years, and 16-17 years, with 4-8 children in each group. Experienced moderators guided the discussions. The full discussions were audiotaped, transcribed and content-analysed. The discussions went smoothly, with much lively debate. For the youngest group, the most important aspect of their HRQL was family functioning. For both younger and older adolescents, social functioning, including the relationship with peers, was most important. Children in all groups considered physical and cognitive functioning to be less important than social functioning. These key findings were taken into account when designing the KIDSCREEN HRQL questionnaire for healthy children and adolescents, with more emphasis being placed on drawing up valid scales for family and social functioning. In addition, items were constructed using the language and lay-out preferred by the youngsters themselves. We conclude that focus groups are a useful way of exploring children's views of HRQL, showing that an emphasis should be placed on constructing valid social and family scales.

A cardiac-specific health-related quality of life module for young adults with congenital heart disease: development and validation.

This study represents the development and validation of a cardiac-specific module of the generic health-related quality of life (HRQoL) instrument, the TAAQOL (TNO/AZL Adult Quality Of Life), for young adults with congenital heart disease (CHD). Items were selected based on literature, an explorative previous study in CHD patients, interviews with patients, and the advice of experts. The newly developed Congenital Heart Disease-TNO/AZL Adult Quality of Life (CHD-TAAQOL) was tested in 156 patients with mild or complex CHD and consisted of three hypothesised subject scales: 'Symptoms' (9 items), 'Impact Cardiac Surveillance' (7 items), and 'Worries' (10 items). Cronbach's alpha for the three scales were 0.77, 0.78, and 0.82, respectively. Scale structure was confirmed by Principal Component Analysis, corrected item-scale and interscale correlations. Overall, 55% of reported health status problems were associated with negative emotions, which is an argument for assessing HRQoL as a concept distinct from health status. Convergent validity with validated generic instruments (TAAQOL and Short Form-36, SF-36) showed satisfactory coefficients. Discriminant validity was proven by significantly higher scores for mild CHD patients compared with those with complex CHD. In conclusion, the CHD-TAAQOL module together with the generic TAAQOL can be used to assess group differences for cardiac-specific HRQoL in young adults with CHD. Testing psychometric properties of the CHD-TAAQOL shows satisfactory results. However, to detect changes in HRQoL over time, further research is needed.

Quality of life in children and adolescents: a European public health perspective.

OBJECTIVES: The measurement of health-related quality of life (HRQOL) is increasingly important as a means of monitoring population health status over time, of detecting sub-groups within the general population with poor HRQOL, and of assessing the impact of public health interventions within a given population. At present, no standardised instrument exists which can be applied with equal relevance in pediatric populations in different European populations. The collaborative European KIDSCREEN project aims to develop a standardised screening instrument for children's quality of life which will be used in representative national and European health surveys. Participants of the project are centres from Austria, France, Germany, Netherlands, Spain, Switzerland, and United Kingdom. By including the instrument in health services research and health reporting, it also aims at identifying children at risk in terms of their subjective health, thereby allowing the possibility of early intervention. METHODS: Instrument development will be based on constructing a psychometrically sound HRQOL instrument taking into account the existing state of the art. Development will centre on literature searches, expert consultation (Delphi Methods) and focus groups with children and adolescents (8-17 years). According to international guidelines, items will be translated into the languages of the seven participating countries for a pilot test with 2,100 children and their parents in Europe. The final instrument will be used in representative mail and telephone surveys of HRQOL in 1,800 children and their parents per country (total n = 25,200) and normative data will be produced. The potential for implementing the measurement tool in health services and health reporting will also be evaluated in several different research and public health settings. The final analysis will involve national and cross cultural-analysis of the instrument. RESULTS: The international, collaborative nature of the KIDSCREEN project means it is likely to provide many challenges in terms of producing an instrument which is conceptually and linguistically appropriate for use in many different countries, but it will also provide the opportunity to develop, test and implement the first truly cross-national HRQOL instrument developed for use in children and adolescents. This will help to contribute to a better understanding of perceived health in children and adolescents and to identify populations at risk.

Clinimetric properties of a parent report on their offspring's quality of life.

The objective of this study was to assess the reproducibility, construct validity, and responsiveness of the parent report version of the "How are you" (HAY), a quality of life questionnaire for children with a chronic disease. The reproducibility of the HAY was assessed by comparing the scores of two measurement cycles of children with stable asthma. Construct validity was evaluated by testing the differences between scores of the HAY of parents of children with and without asthma and by investigating the correlations between the HAY and instruments supposed to correlate with the HAY. Responsiveness was investigated in parents of children whose clinical status changed clinically relevant between two measurements. The HAY showed acceptable reproducibility. Also the HAY detected anticipated differences in quality of life between parents of asthmatic and healthy children. It furthermore showed acceptable ability to measure change in health status of children with asthma. The parent report version of the HAY shows acceptable reproducibility, supportive evidence for construct validity, and good responsiveness. The measurement of quality of life of asthmatic children and changes therein can truly rely on parental report.