Adherence to treatment in children and adolescents with cystic fibrosis: a cross-sectional, multi-method study investigating the influence of beliefs about treatment and parental depressive symptoms

BACKGROUND: Adherence to treatment is often reported to be low in children with cystic fibrosis. Adherence in cystic fibrosis is an important research area and more research is needed to better understand family barriers to adherence in order for clinicians to provide appropriate intervention. The aim of this study was to evaluate adherence to enzyme supplements, vitamins and chest physiotherapy in children with cystic fibrosis and to determine if any modifiable risk factors are associated with adherence.

METHODS: A sample of 100 children (≤18 years) with cystic fibrosis (44 male; median [range] 10.1 [0.2-18.6] years) and their parents were recruited to the study from the Northern Ireland Paediatric Cystic Fibrosis Centre. Adherence to enzyme supplements, vitamins and chest physiotherapy was assessed using a multi-method approach including; Medication Adherence Report Scale, pharmacy prescription refill data and general practitioner prescription issue data. Beliefs about treatments were assessed using refined versions of the Beliefs about Medicines Questionnaire-specific. Parental depressive symptoms were assessed using the Center for Epidemiologic Studies Depression Scale.

RESULTS: Using the multi-method approach 72% of children were classified as low-adherers to enzyme supplements, 59% low-adherers to vitamins and 49% low-adherers to chest physiotherapy. Variations in adherence were observed between measurement methods, treatments and respondents. Parental necessity beliefs and child age were significant independent predictors of child adherence to enzyme supplements and chest physiotherapy, but parental depressive symptoms were not found to be predictive of adherence.

CONCLUSIONS: Child age and parental beliefs about treatments should be taken into account by clinicians when addressing adherence at routine clinic appointments. Low adherence is more likely to occur in older children, whereas, better adherence to cystic fibrosis therapies is more likely in children whose parents strongly believe the treatments are necessary. The necessity of treatments should be reinforced regularly to both parents and children.

Widening our knowledge concerning young looked after children: the case for research using sociological models of childhood

The Assessment and Action framework for looked after children, designed to improve outcomes for all children in public care and those at home on care orders, is now well established in the UK. This paper offers a critical evaluation of the framework by examining the model of childhood upon which it is premised and by exploring its relationship to children's rights as conceptualized in the United Nations Convention on the Rights of the Child (1989). It will be argued that the particular child development model which underpins the framework addresses the rights of looked after children to protection and provision but does not allow for their participation rights to be sufficiently addressed. A critical review of the research concerning the education and health of looked after children is used to illustrate these points. It will be argued that what are missing are the detailed accounts of looked after children themselves. It is concluded that there is a need for the development of additional research approaches premised upon sociological models of childhood. These would allow for a greater engagement with the participation rights of this group of children and complement the pre-existing research agenda

Information sharing and reporting systems in the UK and Ireland: Professional barriers to reporting child maltreatment concerns

Across the UK recent policy developments have focused on improved information sharing and inter-agency cooperation. Professional non-reporting of child maltreatment concerns has been consistently highlighted as a problem in a range of countries and the research literature indicates that this can happen for a variety of reasons. Characteristics such as the type of abuse and the threshold of evidence available are key factors, as are concerns that reporting will damage the professional-client relationship. Professional discipline can also impact on willingness to report, as can personal beliefs about abuse, attitudes towards child protection services and experiences of court processes. Research examining the role of organisational factors in information sharing and reporting emphasises the importance of training and there are some positive indications that training can increase professional awareness of reporting processes and requirements and help to increase knowledge of child abuse and its symptoms. Nonetheless, this is a complex issue and the need for training to go beyond simple awareness raising is recognised. In order to tackle non-reporting in a meaningful way, childcare professionals need access to on-going multidisciplinary training which is specifically tailored to address the range of different factors which impact on reporting attitudes and behaviours.

Searching and planning: Young children's reasoning about past and future event sequences

Six experiments examined children's ability to make inferences using temporal order information. Children completed versions of a task involving a toy zoo; one version required reasoning about past events (search task) and the other required reasoning about future events (planning task). Children younger than 5 years failed both the search and the planning tasks, whereas 5-year-olds passed both (Experiments 1 and 2). However, when the number of events in the sequence was reduced (Experiment 3), 4-year-olds were successful on the search task but not the planning task. Planning difficulties persisted even when relevant cues were provided (Experiments 4 and 5). Experiment 6 showed that improved performance on the search task found in Experiment 3 was not due to the removal of response ambiguity.

Macro impacts on caseworker decision-making in child welfare: a cross-national comparison

This paper focuses on the factors impacting on decision-making in child and family social work through a cross-national comparison. In doing so, the larger arena of the political and social contexts of both the United States and Northern Ireland are examined. For each of the countries we describe the historical and political context of child welfare, particularly the tension between child safety and family support, and how children’s rights are attended to and interpreted in each country. This discussion also examines the extent to which decision-making in each jurisdiction is influenced by constitutional imperatives, with particular reference to the US Constitution and the European Convention on Human Rights. From this general comparison we conclude with observations about child welfare decision-making within the national context and offer suggestions for further theoretical development in this area whilst also examining where the practices in each jurisdiction may benefit from review.

Political Violence and Child Adjustment: Longitudinal Tests of Sectarian Antisocial Behavior, Family Conflict, and Insecurity as Explanatory Pathways

Understanding the impact of political violence on child maladjustment is a matter of international concern. Recent research has advanced a social ecological explanation for relations between political violence and child adjustment. However, conclusions are qualified by the lack of longitudinal tests. Toward examining pathways longitudinally, mothers and their adolescents (M = 12.33, SD = 1.78, at Time 1) from 2-parent families in Catholic and Protestant working class neighborhoods in Belfast, Northern Ireland, completed measures assessing multiple levels of a social ecological model. Utilizing autoregressive controls, a 3-wave longitudinal model test (T1, n = 299; T2, n = 248; T3, n = 197) supported a specific pathway linking sectarian community violence, family conflict, childrens insecurity about family relationships, and adjustment problems.

Parental Disputes, Religious Upbringing and Welfare in English Law and the ECHR

This article assesses the position of English law concerning parental disputes about the religious upbringing of children. Despite the strong emphasis on both parents being able to direct their child’s religious upbringing, courts have interpreted the child’s welfare to restrict the exposure of the child to parental religious beliefs or practices in some circumstances: preserving the child’s future choice of religion, the physical integrity of the child, the child’s contact and relationship with both parents, the child’s educational choices, and the child’s relationship with both parents’ religious community. It is suggested that courts should have a wide understanding of welfare and should be wary to prohibit parents teaching their minority beliefs. This article also compares the position of the European Court of Human Rights (ECtHR) and suggests that, despite the stronger emphasis by the ECtHR on parental rights, English law is generally not that much at odds with the ECtHR.

Assessing elements of a family approach to reduce adolescent drinking frequency: parent-adolescent relationship, knowledge management, and keeping secrets

AIMS: To estimate 1) the associations between parent-adolescent relationship, parental knowledge and subsequent adolescent drinking frequency and 2) the influence of alcohol use on parental knowledge.

DESIGN: Path analysis of school based cohort study with annual surveys SETTING: Post primary schools from urban and intermediate/rural areas in Northern Ireland PARTICIPANTS: 4,937 post primary school students aged around 11 years in 2000 followed until around age 16 in 2005.

MEASUREMENTS: Pupil reported measures of: frequency of alcohol use; parental-child relationship quality; sub-dimensions of parental monitoring: parental control, parental solicitation, child disclosure and child secrecy.

FINDINGS: Higher levels of parental control (Ordinal logistic OR 0.86 95% CI 0.78, 0.95) and lower levels of child secrecy (OR 0.83 95% CI 0.75 0.92) were associated with less frequent alcohol use subsequently. Parental solicitation and parent-child relationship quality were not associated with drinking frequency. Weekly alcohol drinking was associated with higher subsequent secrecy (Beta -0.42 95% CI -0.53, -0.32) and lower parental control (Beta -0.15 95% CI -0.26, -0.04). Secrecy was more strongly predictive of alcohol use at younger compared with older ages (P=0.02), and alcohol use was less strongly associated with parental control among families with poorer relationships (P=0.04).

CONCLUSIONS: Adolescent alcohol use appears to increase as parental control decreases and child secrecy increases. Greater parental control is associated with less frequent adolescent drinking subsequently, while parent-child attachment and parental solicitation have little influence on alcohol use. 

Determinants of Child-Parent Agreement in Quality-of-Life Reports: A European Study of Children With Cerebral Palsy

OBJECTIVES: The differences between child self-reports and parent proxy reports of quality of life in a large population of children with cerebral palsy were studied. We examined whether child characteristics, severity of impairment, socioeconomic factors, and parental stress were associated with parent proxy reports being respectively higher or lower than child self-reports of quality of life. METHODS. This study was conducted in 2004–2005 and assessed child quality of life (using the Kidscreen questionnaire, 10 domains, each scored 0–100) through self-reports and parent proxy reports of 500 children aged 8 to 12 years who had cerebral palsy and were living in 7 countries in Europe. RESULTS: The mean child-reported scores of quality of life were significantly higher than the parent proxy reports in 8 domains, significantly lower for the finances domain, and similar for the emotions domain. The average frequency of disagreement (child-parent difference greater than half an SD of child scores) over all domains was 64%, with parents rating their child’s quality of life lower than the children themselves in 29% to 57% of child-parent pairs. We found that high levels of stress in parenting negatively influenced parents’ perception of their child’s quality of life, whereas the main factor explaining parents’ ratings of children’s quality of life higher than the children themselves is self-reported severe child pain. CONCLUSIONS: This study shows that the factors associated with disagreement are different according to the direction of disagreement. In particular, parental wellbeing and child pain should be taken into account in the interpretation of parent proxy reports, especially when no child self-report of quality of life is available. In the latter cases, it may be advisable to obtain additional proxy reports (from caregivers, teachers, or clinicians) to obtain complementary information on the child’s quality of life.

Differential Pharmacokinetics of Digoxin in Elderly Patients

Digoxin remains one of the most commonly prescribed of all cardiac medications. The main indications for digoxin usage include atrial fibrillation and heart failure; both these conditions are more prevalent in older patients. Given the aging population and the increasing incidence of heart failure we would expect prescribing of digoxin to remain as frequent or to even increase in older patients. Older patients are also more likely to develop toxicity and diagnosis of digoxin toxicity can be difficult in this group. Numerous components contribute to the development of toxicity in older patients, ranging from aging-related changes in renal function or body mass to polypharmacy and possible interactions with digoxin. It is therefore important to understand how the pharmacokinetics of digoxin may be altered in the older population. Application of basic pharmacological principles may be helpful in anticipating these problems. This review describes the pharmacokinetics of digoxin, the changes in pharmacokinetics with increasing age and how concomitant disease states or drug interactions may affect the pharmacokinetics of digoxin. Greater knowledge about the causes and prevention of digoxin toxicity should further reduce the morbidity and mortality arising from digoxin toxicity, especially in the elderly population.
For over 200 years debate has raged regarding the use of digitalis glycosides in cardiac disease. At present digoxin is the most commonly prescribed digitalis compound. This review describes the pharmacokinetics of digoxin and in particular how they are altered with increasing age. When considering the elderly population it is important to recognise the heterogeneity of response in this group, therefore there are no rules, with regards to prescribing, that can apply to the entire elderly population.

Maternal mental health and non-organic failure to thrive.

This study reports on the first phase of a large-scale, longitudinal, multidisciplinary community study examining the growth, learning and development of young children with a particular focus on failure to thrive without organic cause. However, the group identified in this study may be better described as weight faltering. This paper examines the psychological data collected using the Parenting Stress Index, Rosenberg Self-Esteem and the General Health Questionnaire in relation to child growth. There were no significant differences between the mothers of the weight faltering and control children in terms of parenting stress, maternal depression, maternal perceptions of their parenting competence or maternal self-esteem. Maternal sensitivity to comments about child size, regardless of direction, had a negative impact on mood.

Common psychology problems in cerebral palsy

Cerebral palsy (CP) refers to a collection of motor impairments which result in abnormal posture and movement following an insult or damage to the developing brain. Psychological adjustment in children with CP is under researched with little population-based or longitudinal data, but there is sufficient evidence to suggest that children with CP are at increased risk for psychological problems. The types of difficulties they experience include emotional, hyperactivity and peer problems with conduct disorder being more prevalent in mildly affected children. The origins of psychological problems in this group are complex but include ‘disease’ and ‘psychosocial’ factors related to having a brain-based disability in the family, as well as other factors that influence adjustment in all children. There are no intervention studies in children with CP aimed at preventing psychological problems or promoting mental wellbeing. However, evidence from other work suggests it is possible to work with the child and family to develop skills, manage symptoms, and build confidence and resilience. Acting as early as possible has been found to be beneficial for bonding, child development and reducing parental anxiety.

Reliability and Validity of the Child Health QuestionnairePF-50 for European Children with Cerebral Palsy

Objective: To evaluate the psychometric performance of the Child Health Questionnaire (CHQ) in children with cerebral palsy (CP).
Method: 818 parents of children with CP, aged 8–12 from nine regions of Europe completed the CHQ (parent form 50 items). Functional abilities were classified using the five-level Gross Motor Function Classification Scheme (Levels I–III as ambulant; Level IV–V as nonambulant CP).
Results: Ceiling effects were observed for a number of subscales and summary scores across all Gross Motor Function Classification System levels, whilst floor effects occurred only in the physical functioning scale (Level V CP). Reliability was satisfactory overall. Confirmatory factor analysis (CFA) revealed a seven-factor structure for the total sample of children with CP but with different factor structures for ambulant and nonambulant children.
Conclusion: The CHQ has limited applicability in children with CP, although with judicious use of certain domains for ambulant and nonambulant children can provide useful and comparable data about child health status for descriptive purposes.

Public awareness and views on unlicensed use of medicines in children.

WHAT IS ALREADY KNOWN ABOUT THIS SUBJECT center dot There is increasing concern about the use of those medicines in children which have not been fully studied and licensed for childhood use. Such use is not uncommon, due in large part to a lack of availability of fully licensed products and formulations that are suitable for children. center dot There is little published information on the views of the public on this important area of paediatric care. WHAT THIS STUDY ADDS center dot A survey of 1000 members of the public in Northern Ireland indicated that such use of medicines in children is not well known. center dot However, when informed about this practice, the majority believed that it would compromise safety and increase the likelihood of adverse effects. They also believed that parents/guardians should be told if their child was prescribed a medicine that had not been fully tested in children. center dot Participants in the survey indicated that they would be reluctant to involve their child in a clinical trial to help with the licensing process unless the child was suffering from a life-threatening illness. To explore awareness and views of the general public on unlicensed use of medicines in children and on the participation of children in clinical trials. Members of the public completed a questionnaire survey administered by face-to-face interview in public areas in N. Ireland. The main outcome measures were the views on unlicensed use of medicines in children and on clinical trials in children. One thousand participants (59.2% female) took part; 610 were parents. Most participants (86%) had no previous knowledge about unlicensed use of medicines in children. Being a parent did not influence this nor did being a parent of a child who suffered from a health problem (P > 0.05). Most participants (92%) felt that parents should be told about unlicensed use of medicines, with the doctor most frequently selected as the person who should inform parents. At the outset, only 1.8% of participants felt that the use of medicines in children was unsafe. However, having been informed about unlicensed use of medicines, this proportion increased dramatically (62.4%; P <0.001). Views on whether participants would enter a child of their own into a clinical trial varied according to the health status of the child (P <0.05) i.e. a child in good health (3.9%) vs a child with a life-threatening condition (41.9%). There is limited public knowledge of unlicensed use of medicines in children and a general reluctance to involve children in clinical trials unless the child to be involved has a life-threatening condition.

Critical reading of science-based news reports: Establishing a knowledge skills and attitudes framework

A recognised aim of science education is to promote critical engagement with science in the media. Evidence would suggest that this is challenging for both teachers and pupils and that at science education does not yet adequately prepare young people for this task. Furthermore, in the absence of clear guidance as to what this means and how this may be achieved it is difficult for teachers to develop approaches and resources that address the matter and that systematically promote such critical engagement within their teaching programmes. Twenty-six individuals with recognised expertise or interest in science in the media, drawn from a range of disciplines and areas of practice, constituted a specialist panel in this study. The question this research sought to answer was ‘what are the elements of knowledge, skill and attitude which underpin critical reading of science based news reports’? During in-depth individual interviews the panel were asked to explore what they considered to be essential elements of knowledge, skills and attitude which people need to enable them to respond critically to news reports with a science component. Analysis of the data revealed fourteen fundamental elements which together contribute to an individual’s capacity to engage critically with science-based news. These are classified in five categories ‘knowledge of science’, ‘knowledge of writing and language’, ‘knowledge about news, newspapers and journalism’, ‘skills’ and ‘attitudes’. Illustrative profiles of each category along with indicators of critical engagement are presented. The implications for curriculum planning and pedagogy are considered.