Tales of pediatric asthma management: family-based strategies related to medical adherence and health care utilization

doi:10.1067/S0022-3476(03)00448-7

The Journal of Pediatrics

Volume 143, Issue 4, October 2003, Pages 457-462

https://doi.org/10.1067/S0022-3476(03)00448-7 Get rights and content

Abstract

Objectives

To examine how family management styles, garnered from parent interviews about the effect of asthma on family life, are related to medical adherence and health care utilization.

Study design

Eighty parents with a child with asthma were interviewed. Computerized monitoring of medication use was collected every 2 months for 1 year. Parents and children completed measures of medical adherence and health care utilization at the time of the interview and at 1-year follow-up. Three categories of disease management were identified: reactive, coordinated care, and family partnerships. Group comparisons were made by using analysis of variance with medical adherence and health care utilization as dependent variables.

Results

Management strategies revealed in the interview were distinguishable by adherence rates at the time of interview and 1 year after. Interview categories were also predictive of emergency department use at 1-year follow-up. The reactive group received a diagnosis of asthma 1 year after noting symptoms, in contrast with the other groups, who received a diagnosis within 6 months.

Conclusions

The use of semistructured interviews may reveal important information about how families manage asthma. Further work may help identify areas amenable to intervention and provide a better understanding of why some families delay treatment.

Section snippets

Participants

Eighty families with a child with asthma were drawn from a larger longitudinal study on family functioning and asthma,¹¹ with approval from the Institutional Review Board. The families were selected from the larger pool, excluding those cases in which the child was >15 years. The families ranged from lower to upper class, with a Hollingshead¹² mean score of 42.04 (SD = 13.3). In terms of ethnic diversity, 65% were white, 17% black, 15% Hispanic, and 2% Asian. More than half (60%) of the parents

Results

We found that the interviews could be reliably coded into one of the three categories, with 14% classified as reactive, 53% coordinated care, and 33% family partnerships. The three categories were not distinguishable by asthma severity, marital status, race, socioeconomic status, word count, or reading level. Child age differed across interview classifications (F[2,77] = 5.97, P<.004), with the families who expressed reactive strategies having older children with asthma (mean = 11.27, SD = 1.48) than

Discussion

We set out in this study to determine whether verbal accounts of family management strategies were related to health care utilization and adherence rates in cases of pediatric asthma. We found that the stories that parents told about how asthma affected their lives could be reliably coded, were unrelated to linguistic markers and demographic background, and were concurrently and prospectively predictive of medical adherence.

There are several limitations to this study that deserve attention. We

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Patient-related barriers, including patient attitudes toward treatment plans,22 psychological dysfunction, patient motivation, and belief in their caregiver, may also impact adherence. Particularly for children with asthma, family conflict and environment can significantly impact adherence.23,24 Finally, factors related to the clinician, such as the patient-clinician relationship, may influence adherence.20
Medication nonadherence and health literacy are key factors that influence the management of difficult-to-control asthma. Adherence, or the extent to which a patient follows a treatment plan, extends beyond asthma medication use and includes an appropriate inhaler technique. Assessment of adherence is critical before making a diagnosis of severe asthma and stepping up asthma therapy but is challenging in the clinical context. Health literacy, or the degree to which individuals can obtain, process, and understand health information and services needed to make health care decisions, is additionally important for asthma management and has been shown to impact medication adherence. Initiatives aiming to improve difficult-to-control asthma should address medication adherence and health literacy. Universal health literacy precautions are recommended while communicating with patients, in addition to the creation of low health literacy asthma action plans. To improve adherence, a comprehensive assessment of adherence should be conducted. Additional evidence-based interventions aiming to improve adherence focus on appropriate inhaler use, improved access to medications, the use of digital platforms, school-based asthma interventions, and the implementation of culturally tailored interventions. Data are limited regarding the use of these initiatives in patients with severe or difficult-to-control asthma.
Evaluating the effectiveness of a family empowerment program on family function and pulmonary function of children with asthma: A randomized control trial
2016, International Journal of Nursing Studies
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Both of these roles are instrumental in empowering families to ensure the health of their asthmatic children. The previous family-related intervention for children with asthma was conducted to evaluate families’ skills (Kelcher and Brownoff, 1994), medical adherence and health care utilization (Fiese and Wamboldt, 2003), and quality of life (Fiese et al., 2005; Ng et al., 2008; Payrovee et al., 2014). A systematic review also indicated that parent- and family-based psychological therapies can improve parent outcomes (Law et al., 2014).
Empowerment can be an effective strategy for changing an individual's health behaviours. However, how to empower whole families to manage their children's asthma is a challenge that requires innovative nursing intervention based on family-centred care.
To evaluate the effectiveness of a family empowerment program on family function and pulmonary function of children with asthma compared to those receiving traditional self-management only.
A randomized control trial.
Sixty-five families were recruited from one asthma clinic in a medical centre in Taiwan. After random assignment, 34 families in the experimental group received the family empowerment program consisting of four counselling dialogues with the child and its family. We empowered the family caregiver's ability to manage their child's asthma problems through finding the problems in the family, discovery and discussion about the way to solve problems, and enabling the family's cooperation and asthma management. The other 31 families received the traditional care in asthma clinics. The Parental Stress Index and Family Environment Scale of family caregivers, and pulmonary function, and asthma signs of children with asthma were collected at pre-test, 3-month post-test, and one-year follow-up. We utilized the linear mixed model in SPSS (18.0) to analyze the effects between groups, across time, and the interaction between group and time.
The family empowerment program decreased parental stress (F = 13.993, p < .0001) and increased family function (cohesion, expression, conflict solving, and independence) (F = 19.848, p < .0001). Children in the experimental group had better pulmonary expiratory flow (PEF) (F = 26.483, p < .0001) and forced expiratory volume in first second (FEV1) (F = 7.381, p = .001) than children in the comparison group; however, no significant change in forced expiratory volume in first second (FEV1)/forced vital capacity (FVC) was found between the two groups. Sleep problems did not show significant changes but cough, wheezing, and dyspnoea were significantly reduced by family caregiver's observations.
We empowered families by listening, dialogues, reflection, and taking action based on Freire's empowerment theory. Nurses could initiate the families’ life changes and assist children to solve the problems by themselves, which could yield positive health outcomes.
Patterns of family management of childhood chronic conditions and their relationship to child and family functioning
2013, Journal of Pediatric Nursing
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More recently, investigators have examined the relationship between patterns of family management and family and family member outcomes. For example, Fiese and Wamboldt (2003) used narrative analysis techniques to identify three patterns (Reactive, Coordinated care, Family partnership), reflected in the story parents were asked to tell about how asthma had affected family life. The patterns were differentiated by the extent to which families had an established routine and how they worked with one another and healthcare providers to carry out prescribed treatments.
Understanding patterns of family response to childhood chronic conditions provides a more comprehensive understanding of their influence on family and child functioning. In this paper, we report the results of a cluster analysis based on the six scales comprising the Family Management Measure (FaMM) and the resulting typology of family management. The sample of 575 parents (414 families) of children with diverse chronic conditions fell into four patterns of response (Family Focused, Somewhat Family Focused, Somewhat Condition Focused, Condition Focused) that differed in the extent family life was focused on usual family routines or the demands of condition management. Most (57%) families were in either the Family Focused or Somewhat Family Focused pattern. Patterns of family management were related significantly to family and child functioning, with families in the Family Focused and Somewhat Family Focused patterns demonstrating significantly better family and child functioning than families in the other two patterns.
Demographic, socioeconomic, and psychological factors related to medication non-adherence among emergency department patients
2012, Journal of Emergency Medicine
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However, no consistent relationship has been demonstrated. Conceptual frameworks related to adherence to physician recommendations, including the use of medications, posit the importance of psychological factors as important contributors, but little clinical evidence exists to support these theoretical models (10,17,28–30,32,34–39). The current study explores the influence of demographic, socioeconomic, and psychological factors related to medication non-adherence in a population of ED patients.
Background: Many Emergency Department (ED) visits are related to medication non-adherence; however, the contributing factors are poorly understood. Objectives: To explore the relative contributions of demographic, socioeconomic, and psychological factors to medication non-adherence in an ED population. Methods: This was a cross-sectional analysis enrolling patients with one of three illnesses requiring chronic medication usage (hypertension, diabetes, or seizures). Trained research associates administered a 60-item survey that assessed demographic and socioeconomic information, as well as a variety of psychological factors potentially relevant to adherence (health attitudes, health beliefs, depression, anxiety, social support, and locus of control). Patients rated their overall prescription medication adherence and estimated the number of days in the preceding month on which doses were missed. In addition, treating physicians estimated the degree to which the ED visit was related to medication non-adherence; clinical data were abstracted to help validate patient and physician assessments. The relationships between non-adherence and demographic, socioeconomic, and psychological variables were explored using multivariate statistics and logistic regression. Covariance analysis was performed to validate subscales, and receiver-operator curves were used to define optimal threshold values. Results: A total of 472 patients consented to participate, with good representation for various demographic and socioeconomic groups. Each psychological factor related significantly to both patient and physician ratings of non-adherence (p < 0.05). Of all demographic and socioeconomic factors examined, only current or historical drug use predicted non-adherence. Conclusions: Psychological factors seem to be important determinants of medication non-adherence among ED patients. These data may help define future research directions and interventions.
The effect of family routines on care for inner city children with asthma
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This article provides the results of a study utilizing baseline data from the School-Based Asthma Therapy Trial, an ongoing comprehensive school-based intervention for urban children. We examined the effect of family routines as measured by the Asthma Routines Questionnaire on asthma care measures of trigger control and medication adherence, as well as on parental quality of life. We found that families with more asthma routines had better adherence with preventive medications (r = .36) and less exposure to environmental triggers (r = −.22). These findings suggest that assisting families in developing routines around asthma care might improve preventive care for urban youth.
Taking patients' narratives about clinicians from anecdote to science
2015, New England Journal of Medicine
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“Fulsome” in this context means deriving not only positive and negative experiences but also narratives that describe all aspects of care that concern consumers when selecting clinicians.12 Effective elicitation also induces a coherent description of what happened from the patient’s perspective and why it mattered, as well as details that allow readers to discern whether they identify with the narrator in terms of health needs, expectations for care, and preferences for autonomy.33,40 This will not be accomplished by simply inserting open-ended questions asking whether patients have “anything else to add.”
When choosing clinicians, patients often rely on comments available on consumer websites. The authors argue that public reporting of standardized patient satisfaction surveys could be improved if they were augmented by narrative accounts of patients' experiences.
Sometimes a picture is not worth a thousand words — or even a few sentences. So it appears for the public reporting of patients’ experiences with doctors and clinics. Millions of dollars have been invested in the collection of standardized, quantitative measures of patient experience and in reporting them with the use of colorful icons that highlight the best and worst performers.¹ However, consumers’ use of these measures remains limited because of a lack of timely exposure, doubts about the trustworthiness and relevance of metrics, and the complexity of reports and websites that incorporate multiple ratings.1, 2, 3, 4 By contrast, websites . . .

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^☆: Supported in part by grants from the National Institutes of Health (R01 MH51771-01) and the W. T. Grant Foundation to B. H. F. and from the National Institutes of Health (R01-HL53391 and M01-RR0051) to F. S. W.

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Original articleTales of pediatric asthma management: family-based strategies related to medical adherence and health care utilization☆

Abstract

Objectives

Study design

Results

Conclusions

Section snippets

Participants

Results

Discussion

J Psychosom Res

Soc Sci Med

J Pediatr

Ann Allergy Asthma Immunol

J Am Acad Child Adolesc Psychiatry

Annual review of child health care access and utilization

Pediatrics

Management of asthma by patients and families

Am J Respir Crit Care Med

Psychosocial aspects of compliance in children and adolescents with asthma

Dev Behav Pediatr

Division of responsibility for asthma management tasks between caregivers and children in the inner city

Dev Behav Pediatr

Barriers to asthma care in urban children: parent perspectives

Pediatrics

Self-regulating childhood asthma: a developmental model of family change

Health Educ Behav

Introduction to qualitative research methods

Original article
Tales of pediatric asthma management: family-based strategies related to medical adherence and health care utilization☆