Parental concern towards the use of inhaled therapy in children with chronic asthma

BACKGROUND: Parental attitudes towards the use of inhaled therapy in children with chronic asthma influence treatment adherence and outcome. In the present study, we evaluated the perceptions and concerns of parents of children with chronic asthma towards inhaled therapy. METHODS: A self-administered standard questionnaire was distributed to parents of children attending the Paediatric Asthma Clinic. All these children required inhaled steroids for treatment. RESULTS: One-hundred and twelve of 170 parents (66%) surveyed were concerned with inhaled therapy. The most common concern with its use was medication side effects (91%), followed by 'inhaler dependency' (86%), cost of the inhaler (34%) and difficulty in using the inhaler (15%). Parental perception that the oral route was superior to the inhaled route, preference for the oral route for asthma prophylaxis and a higher steroid dose required for prophylaxis were more likely to be associated with concerns towards inhaled therapy. More importantly, these children were also more likely to miss > 25% of their prescribed doses of inhaled steroids (46 vs 22% in the group concerned about inhaled therapy compared with the group that was not concerned, respectively; P = 0.007) and had a higher mean number of nebulization treatments in the last year (3.2 +/- 2.9 vs 1.8 +/- 1.3 in the group concerned about inhaled therapy compared with the group that was not concerned, respectively; P = 0.01). CONCLUSIONS: A significant proportion of parents whose children were on inhaled prophylaxis had concerns towards the use of inhaled therapy. Parental concern towards inhaled therapy appeared to increase the problem of non-adherence to treatment. Education for these parents will need to be addressed to improve asthma management in our patient population.     

Parental perceptions of their child's asthma: management and medication use.

INTRODUCTION: Adequate treatment for asthma depends on accurate assessment and intervention by the parent and child and timely communication with the provider. These actions by the parent may be affected by their understanding of asthma management and their concerns about medications being prescribed. This research reports parental experiences with their children with asthma, specifically their beliefs, knowledge, and attitudes about asthma management, including medication use. METHODS: Data reported are from a study investigating parental attitudes and beliefs affecting antiinflammatory medication use in childhood asthma. These qualitative findings emerged from one-on-one semistructured qualitative interviews with 18 parents of children 2 to 18 years of age who were from diverse racial and socioeconomic backgrounds and who represented the spectrum of illness severity. RESULTS: Eight main themes within the domain of asthma management and medication use were identified: "I know my child," "trial and error," "partnership," "need for education," "negotiating responsibility," "hassles with medication administration," "preferences," and "the benefits outweigh the risks of side effects." DISCUSSION: These themes emphasize parents' need to partner with providers in their child's asthma management, as well as their need for ongoing asthma education. Parents also expressed concern about adverse effects of antiinflammatory medication but acknowledged the importance of controlling asthma symptoms. Based on these findings, systematic practice changes are recommended that provide regular opportunities for parent and child asthma education in a structured asthma wellness or "tune-up" visit.     

Quality of care at the end of life in children with cancer

Aim:   Current Australian guidelines for the provision of paediatric palliative care highlight the importance of services being focused on the needs of the child and family. We aimed to establish parents' level of satisfaction with the quality of care currently being provided to children dying of cancer.
Methods:   We interviewed 96 parents of children who died of cancer in Melbourne, Australia between 1996 and 2004 to ascertain how they rated the care provided to their child during the end-of-life period.
Results:   A majority of parents were satisfied with the care provided by their primary oncologist, local doctors, palliative care services and home-care nurses. Most parents felt that discussions about key medical and treatment decisions were appropriate and clearly understood. Parents were generally satisfied with the leadership roles undertaken in decision-making in the end-of-life period; however, parents who were not satisfied indicated that they would like additional involvement of their primary oncologist.
Conclusions:   Current approaches to end-of-life care in children with cancer appear to be satisfactory. The main focus should continue to be on open and honest communication.     

What parents of children with asthma tell us.

INTRODUCTION: The family's contribution to effective asthma management is increasingly being recognized. This study gathered and analyzed information from parents about their greatest fears relative to having a child with asthma and identified information that parents believed was critical for providers to acknowledge. The methodology serves as a model for possible practitioner-directed action research with their care population. METHODS: Written information from 52 parents who attended focus groups comprise the data. Data were analyzed using constant comparative strategies. RESULTS: Common parental fears included uncertainty, long-term effects of medication, and concern that the condition would not go away or improve. Common themes parents wanted providers to know included the following: parents need more information; parents are scared and fearful; living with asthma is difficult, and this stress affects the parents' behavior; and parents know what is best for their child. Age trends were identified for fear themes only. DISCUSSION: Findings suggest parents can and should be asked about their greatest fears and concerns. Although developmental patterns may be used to initiate discussion, providers need to identify parents' unique concerns so they can integrate them in refining the child's asthma action plan.     

Asthmamanagement im Kindes- und Jugendalter

Background

Despite widespread use of anti-inflammatory drugs the morbidity of asthma in the paediatric age group is still increasing. Los acceptance of therapy may be a reason for this.

Methods

A validated questionnaire was administered in to 101 children and 109 of their parents in personal interviews and to 102 paediatriicians in telephone interviews.

Results

The majority of the children and their parents expressed dissatisfaction with the current asthma management. Children and their parents expressed very similar judgments, but the answers given by the paediatricians differed notably from those of both other groups. The physicians underestimated the time taken up by the therapy, and overestimated the patients’ anxiety aboutasthma drugs. New types of inhalers (dry powder inhalers; DPIs) were not rated at all highly, “classic” MDIs (metered dose inhalers) being preferred by children and their parents, followed by tablets or capsules. Physicians imagined patients would prefer DPIs,as they themselves thought these were superior for inhalation therapy. In addition, children and their parents reported more frequently than the paediatricians imagined that they would like more information on the disease and the medication available, Especially if this were presented in a group situation or through the new media.

Conclusion

It will not be possible to improve compliance in asthma management unless the frequency of drug administration isreduced and better communication between doctor and patient is achieved.     

Barriers to anti-inflammatory medication use in childhood asthma.

OBJECTIVES: To identify parental barriers to anti-inflammatory medication use and to develop an instrument for use in research and health care settings to identify at-risk populations. METHODS: Instrument development consisted of 4 phases: 1) gaining the professional perspective (N = 8 experts in asthma management), 2) gaining the perspective of parents of children with asthma (qualitative interviews with 21 parents), 3) instrument pretesting and refinement (N = 133 parents), and 4) determining the instrument's psychometric properties. Study participants were diverse in race, socioeconomic status, and the child's illness severity. The final instrument consisted of 51 questions in 5 domains (nature of disease, cause, ideas about medications, treatment expectations, and health care provider relationship). RESULTS: The final instrument exhibited strong reliability (Cronbach alpha =.87) and validity. Significant barriers to appropriate anti-inflammatory medication use were parents' diminished treatment expectations and fears about anti-inflammatory medications. Minority families were more likely than white families to view asthma as unpredictable and uncontrollable (P =.01) and to have negative attitudes toward anti-inflammatory medications (P =.004). Eight questions were significantly correlated with a suboptimal medication regimen and may serve as a "quick screen" for potential nonadherence in clinical settings. CONCLUSIONS: Diminished treatment expectations and negative attitudes toward anti-inflammatories may be powerful predictors of nonadherence to medications.     

Community perspectives of childhood behavioral problems and ADHD among African American parents.

OBJECTIVE: To explore parents' perceptions of childhood behavior problems and attention-deficit/hyperactivity disorder (ADHD) among a sample of African American (AA) parents. METHODS: Five focus groups were conducted in inner-city Baltimore and the Washington, DC, metropolitan region with 5 to 7 AA parents per group. Adults with children under the age of 17 years were recruited from pediatric practices. One investigator moderated each focus group, and a second took notes. Sessions averaged 1.5 hours long, were recorded on audiotape, and were transcribed verbatim. The narrative data were coded for recurring themes. RESULTS: Five major themes emerged from the analysis: causes of behavioral problems in children, the legitimacy of ADHD as a diagnosis, attitudes about doctors, opinions of medication, and perceptions of the school environment. Many participants felt that behavior issues, including those accompanying ADHD, were caused by inappropriate parenting and disciplinary practices. Some viewed the diagnosis as a label applied with racial inequality to exert social control over AAs. Several expressed distrust in physicians who were quick to make a diagnosis of ADHD and recommend medications. Others worried that medication would lead to drug addiction in adulthood. Some perceived that children were labeled with ADHD because of poor educational environments that were unresponsive to the needs of AA children. CONCLUSIONS: These focus groups identified important community perceptions about ADHD and its medical treatment. Understanding how these perceptions contribute to racial disparities in ADHD diagnosis and treatment can help inform culturally sensitive interventions to improve the management of ADHD among AA children.     

Deciding on treatment limitation for neonates: the parents' perspective

 The reported study aimed to explore parents' perceptions of treatment withdrawal/withholding; their experience and their opinions. In-depth face-to-face interviews at 3 and 13 months after the baby's death were conducted with 108 parents of 62 babies from the East of Scotland. Of the parents, 56% (60/180) believed they had decided to stop treatment. A further 4/59 sets of parents subsequently wished they had taken responsibility. Only one parent who did decide felt guilt 3 months after the event. Parents identified two essential factors which minimise doubt: full and honest information and concrete evidence of a poor prognosis. Conclusion The majority of parents wish to be active in decision making on behalf of their baby. Doing so does not appear to have adverse consequences. The pacing of events in the process of deciding and managing the dying is critical. Dissatisfaction is reduced if parents are given time and evidence to help them assimilate the reality at each stage. Received: 16 October 2000 / Accepted: 21 December 2000     

A single dose of intramuscularly administered dexamethasone acetate is as effective as oral prednisone to treat asthma exacerbations in young children

OBJECTIVE: To evaluate whether a single dose of intramuscularly administered dexamethasone acetate (IM Dex) was as safe and effective as a 5-day course of oral prednisone (PO Pred) in the treatment of young children with mild-moderate exacerbations of asthma. STUDY DESIGN: A prospective, randomized, investigator-blinded study was done in a tertiary care medical center in children (6 months to 7 years of age) who required corticosteroids to treat mild-moderate asthma exacerbations as outpatients. Patients were randomized to receive either a single dose of IM Dex ( approximately 1.7 mg/kg) or PO Pred ( approximately 2 mg/kg/d for 5 days). Clinical asthma score, behavioral changes, albuterol use, and tolerance of the medication were recorded in a home diary for 7 days. Cortisol/creatinine ratios on first morning void urine samples were obtained on day 14. The primary outcome measures were changes in clinical asthma score through day 5 and tolerance of the medication. RESULTS: Fifteen patients in the IM Dex group (mean age 37 months) and 17 in the PO Pred group (mean age 36 months) completed the study. Clinical asthma score improved significantly in both groups during the first 5 days of therapy, and no significant difference was seen in the rate of improvement between the 2 groups. Three children refused more than 75% of their prednisone doses, and another 4 missed 30% to 50% of the doses despite their parents' best efforts. The intramuscular injection caused no complications, and approximately 70% of parents in both groups stated that they would choose IM Dex to treat their child's next asthma exacerbation. CONCLUSION: In this group of children a single intramuscular injection of dexamethasone acetate was as effective as a 5-day course of PO Pred for the management of mild-moderate outpatient asthma exacerbations.     

Achieving treatment goals for schoolchildren with asthma

OBJECTIVES: To identify problems in managing asthmatic children in school, which if dealt with would help reduce absenteeism and improve participation in school activities. DESIGN: A survey by questionnaire to headteachers. SETTING: Schools in Merthyr and Rhondda Cynon Taff, South Wales. SUBJECT: Asthmatic schoolchildren in areas studied. MAIN OUTCOME MEASURES: Facilities in schools to manage asthma, headteachers' perceptions of knowledge of asthma management by teachers, possession of written policies, and desire for further training. RESULTS: There are 216 schools in the area studied, with 55,166 schoolchildren. A total of 191 (88%) headteachers returned the completed questionnaire. Five hundred and twenty seven (17%) children were reported absent from school during one term because of asthma, with an average of nine days of schooling lost per asthmatic child per term (range 2-16 days). Only 76 (40%) schools allowed children to be responsible for their inhalers, and 12 (6%) schools required parents to administer inhalers. In 115 (60%) schools, headteachers believed their staff were familiar with the management of asthma. A total of 174 (91%) headteachers expressed interest in further training. CONCLUSION: This study highlights the need to train teachers and provide an agreed joint education and health policy on managing asthma in school.     

Clinical trials in pediatric cancer: parental perspectives on informed consent

To better understand parental perceptions of the informed consent process in pediatric oncology clinical trials, 20 parents of newly diagnosed children at two pediatric cancer centers described their perceptions in a semi-structured interview. They recalled well the diagnosis, the general treatment plan, and the statistics of survival and/or cure, but the research nature of the clinical trials, particularly randomization, was not well understood. However, despite the need to assimilate a great deal of information, time pressure to make decisions, and reportedly high levels of distress during the discussions, parents expressed general satisfaction with the informed consent discussions with their pediatric oncology providers. However, half to two thirds of parents felt there had been inadequate discussion of alternatives to the proposed treatment and of the research nature of the protocol. While further study of the informed consent process should be conducted in larger, representative samples, the findings from this pilot study suggest that a goal of future informed consent interventions should be to improve parents' understanding of the research aspects of treatment. It is critical to parents' ability to provide informed consent that they feel satisfied that they know alternatives to proposed treatment and that they understand the randomization of treatments, which is the gold standard of clinical trials in pediatric oncology.     

Parental opinions regarding treatment for social anxiety disorder in youth

This study surveyed parents' opinions about treatment for childhood social anxiety disorder and assessed variables that may affect treatment acceptability. A 20-item survey assessing treatment attitudes and a semistructured interview were administered to 190 parents of children (8-17 years) who were randomly selected from a pediatric primary care setting. An exploratory factor analysis of the treatment attitudes survey yielded four factors: medication acceptability, counseling acceptability, counseling feasibility, and general beliefs about social anxiety treatment. Findings revealed that parents endorsed favorable attitudes toward counseling and somewhat neutral beliefs about medication. White parents were more accepting of medication and counseling and also perceived counseling as more feasible than nonwhite parents. Treatment acceptance was associated with past mental health utilization but not with severity of social anxiety. Further research is necessary to determine if clinical interventions for child anxiety disorders may be more efficacious if parents' attitudes and beliefs about prescribed treatments are addressed.     

Communicating with pediatricians about complementary/alternative medicine: perspectives from parents of children with down syndrome.

OBJECTIVES: Barriers to communication about complementary/alternative medicine (CAM) between parents and pediatricians are frequently documented, yet the scope of these barriers remains poorly understood. Such barriers are especially troubling when they involve children with special health needs, among whom CAM use is especially common. This pilot study of parents of children with Down syndrome (DS) used qualitative methods to explore parents' perceptions of the extent and quality of communication about CAM with pediatricians, to elicit parents' recommendations for improvement, and to formulate new research questions. DESIGN: Semistructured interviews were conducted with parents from 30 families with children with DS. Data were audiotaped and analyzed with assistance from qualitative data analysis software. RESULTS: Parents described how they advocated vigorously with their pediatricians about biomedical concerns such as the American Academy of Pediatrics healthcare guidelines for DS, but often avoided discussion of nonbiomedical concerns such as CAM. Many parents looked to pediatricians to initiate conversations about CAM. DISCUSSION: Even parents who assertively advocate for biomedical concerns in their children's health care may be unlikely to disclose and discuss CAM use with their pediatricians. Attending to parents' experiences helps to illuminate the nature and scope of current communication barriers and poses new research questions for assessing and improving parent-physician collaboration about health-related issues that may be prioritized differently by parents and pediatricians.     

Group discussions with parents have long-term positive effects on the management of asthma with good cost-benefit

AIM: To investigate if an intervention with extra information and support in a group setting to parents of preschool children could improve adherence and clinical outcome. METHODS: This is a controlled, prospective study where the parents of 60 newly diagnosed preschool asthmatic children aged 3 mo-6 y were randomized to either a control group or to an intervention that consisted of four group sessions in close connection with the diagnosis. The basic education on asthma and the written treatment plan were the same in both groups. The outcome measures were questionnaires to the parents and classification of the children according to symptoms and medication. The adherence rate and the burden of asthma were calculated with the help of diaries and weighing of the MDIs used between 12 and 18 mo after inclusion. RESULTS: The follow-up rate was 85% after 18 mo. The parents' presence in the sessions was around 70%, with no gender difference. The parents' view on adherence issues improved significantly in the intervention group. In the control group, 30% had poor adherence compared to 8% in the intervention group (p=0.015). Both the parents and the paediatricians underestimated the number of children with poor adherence. The children in the intervention group had significantly fewer exacerbation days during the last 6 mo-2.1 compared to 3.9 d/child-although they had lower inhaled steroid doses after 18 mo. An economic calculation showed that the intervention was profitable. CONCLUSION: This intervention resulted in an improvement in the parents' view on adherence, in the measured adherence rates and in the clinical outcome.     

Parental attitudes towards the management of asthma in ethnic minorities.

OBJECTIVES: Children from Indian and Pakistani (South Asian) and black minority groups have relatively high rates of attendance at accident and emergency (A&E) departments and admissions to hospital in the UK. We examine parents' beliefs and management of childhood asthma that possibly contribute to their greater use of hospital services. DESIGN: Questionnaire survey. SETTING: Three London hospitals serving multicultural communities with a high proportion of South Asian subjects. PARTICIPANTS: Parent(s) accompanying 150 children aged 3-9 years with asthma attending asthma clinics and A&E departments. MAIN OUTCOME MEASURES: White, South Asian and "other" ethnic group parents were compared regarding their children's symptoms and asthma in relation to why their children had developed asthma, use of asthma treatments, views about the prognosis of their children's asthma, and their feelings associated with stigma. RESULTS: South Asian more often than white parents stated that they did not give preventers to their children (odds ratio (OR) 0.30; 95% confidence interval (CI) 0.12 to 0.75), that most drugs were "addictive" (OR 3.89; 95% CI 1.47 to 10.27), and that medicines could do more harm than good (OR 3.19; 95% CI 1.22 to 8.34). South Asian and "other" ethnic groups were more reluctant to tell others about their children's asthma (OR 0.11; 95% CI 0.01 to 1.06 and OR 0.06; 95% CI 0.01 to 0.65, respectively). CONCLUSION: Cultural perspectives related to ethnicity are key factors in the understanding of asthma management. Health staff should give high priority to eliciting parents' beliefs regarding management of their children's asthma.     

Management of attention deficit hyperactivity disorder: a parental perspective

OBJECTIVES: There are few studies exploring parental perceptions of the diagnosis and overall treatment of their children with attention deficit hyperactivity disorder (ADHD). This community-based study was conducted to consider this important aspect of care. METHODS: A total of 7 226 (65%) parents responded to a community survey of 11 184 children aged 10-12 years living in northern Sydney in 2000, out of which 278 children with ADHD were identified. Their parents completed an anonymous questionnaire covering their perceptions relating to diagnosis, treatment and overall management. RESULTS: Only 66% of parents recalled the use of questionnaires or rating scales. There were 82% of children who had trialed medication and 66% of these were still taking it. Behavioural intervention had occurred in 42% of the children. Non-conventional treatments, most commonly elimination diet and/or fatty acid supplementation, had been used in 71% of the children. These were considered helpful in one-third of cases. A total of 55% of parents reported being either satisfied or very satisfied with their child's care. Parents were more likely to report satisfaction when their children were on medication and when reviews were held at least 6 monthly. Lack of educational support and teachers' understanding of ADHD were identified as ongoing issues. CONCLUSION: Parental responses suggested that adherence to recommended diagnostic guidelines was inadequate. Behavioural intervention was underutilized despite its documented positive role. Non-conventional therapies were widely used and considered helpful in one-third of the children who used them. Use of stimulant medication and frequent reviews were more likely to be associated with overall management satisfaction.