What parents of children with asthma tell us

doi:10.1016/S0891-5245(00)70023-X

Journal of Pediatric Health Care

Volume 14, Issue 3, May–June 2000, Pages 122-126

https://doi.org/10.1016/S0891-5245(00)70023-X Get rights and content

Abstract

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. J Pediatr Health Care. (2000). 14, 122–126.

Section snippets

Methods

The focus groups consisted of a total of 52 parents who had children with asthma. Children's ages ranged from 18 months to 19 years. Earlier in the day, parents attended a 3-hour Parent Asthma Education Conference. Each parent was invited to remain for a complimentary box lunch and an opportunity to talk with a small group of other parents who had a child of similar age with asthma. A nurse with experience in caring for children with asthma served as group facilitator. Middle-class families

Parental fears

Table 1 lists the emergent themes and their frequency of mention.

. Parental fears

Theme	No. mentioning	%
Uncertainty	22	42.3
Long-term effects of medication	10	19.2
Won't go away/Won't get better	6	11.5
Dying	5	9.6
Unable to develop a normal lifestyle	3	5.8
Increased susceptibility	2	3.8
Hospitalization	1	1.9
Noncompliance of the youth	1	1.9
Anaphylaxis	1	1.9
Dependency on medications	1	1.9
Total Responses	52	99.8^*
*Total percentage = 99.8 because of rounding.

Most thematic categories included a response from at least one parent

Generalizability

The generalizability of these findings to the concerns of all parents of children with asthma is impossible to estimate because of the small sample size and limited geographic representation. However, analysis of information from a focus group held the prior year in the same metropolitan area with more than 100 participants revealed similar concerns regarding uncertainty and fears of medication effects (Ratcliffe & Kieckhefer, 1997). We have already begun to replicate the process and ask these

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Unstructured parental comments could solicit important information about children's asthma, yet are rarely captured in clinical asthma questionnaires. This mixed-methods study describes parents’ written responses to an open-ended question in a validated asthma questionnaire.
The Pediatric Asthma Control and Communication Instrument (PACCI) asthma questionnaire was administered to parents of children with asthma symptoms presenting to 48 pediatric primary care offices (PPCP), 1 pediatric pulmonology office, and 1 emergency department (ED). Responses to the question, “Please write down any concern or anything else you would like your doctor to know about your child's asthma” were analyzed using a phenomenological approach until thematic saturation was achieved for each site. Logistic regressions tested whether sociodemographic and clinical characteristics were associated with responding to the open-ended question.
Of 7,988 parents who completed the PACCI, 954 (12%) responded to the open-ended question—2% in PPCP, 31% in the ED, and 50% in the pulmonary setting. More severe asthma was associated with higher odds of responding (odds ratio, 2.01; 95% confidence interval, 1.42–2.84). Based on responses provided, we identified 3 communication types: 1) clarifying symptoms, 2) asking questions, and 3) communicating distress. Responses also covered 5 asthma-related themes: 1) diagnostic uncertainty, 2) understanding asthma etiology and prognosis, 3) medication management, 4) impact on child function, and 5) personal asthma characteristics.
Parents of children with severe asthma provided clarifying details, asked questions, and relayed health concerns and distress. None of these topics may be easily captured by closed-ended asthma questionnaires.
Relationship between pediatric asthma and psychosocial status of caregivers
2020, Respiratory Medicine
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Furthermore, the possible biological, psychological and social impact of chronic childhood diseases in the family environment of affected children has also been studied [8,9]. The present study aims to investigate the presence of psychosocial disorders in the primary caregivers of asthmatic and healthy children to establish possible local differences, which have already been observed in international studies [7–12]. It intends to explore possible relationships between asthma and psychosocial disorders in caregivers, taking into account different parameters representative of the severity and control of the disease.
To determine the relationship between psychosocial caregiver disorders and childhood asthma.
We performed a matched case–control study with asthmatic children (6-14 years of age) from two different clinics in Zaragoza, Spain, between 2010 - 2016. Clinical data were collected from medical records and psychosocial disorders were assessed by interviewing the caregiver using validated questionnaires (Goldberg, CES-D, SF-12, PSS and SPIN). General analysis of cases and controls was performed using McNemar, Chi² and Wilcoxon nonparametric tests. A logistic regression model to predict more severe asthma, adjusted by caregiver psychosocial disorders was performed.
208 children were evaluated (104 cases). Mean age was 9.7 ± 2.4 years, with a male predominance (62.5%). Anxiety, social phobia, depression, acute and chronic psychological disorders, and poor quality of life related to mental health were significantly more prevalent in caregivers of asthmatic children (p<0.05). On multivariate analysis, all of the above disorders significantly increased the risk of uncontrolled asthma, where anxiety, acute psychological disorders, and chronic psychological disorders were the most significant (OR 8.54, 95%CI 3.46-21.05, p<0.001; OR 6.05, 95%CI 2.39-15.28, p<0.001; and OR 4.86, 95%CI 1.97-12.02, p=0.001, respectively).
The prevalence of psychosocial disorders in caregivers of asthmatic children is high, when compared to caregivers of healthy children. The presence of anxiety, social phobia, depression, and poor quality of life is associated with an increased risk of worse controlled asthma. Perhaps, early detection and treatment of these disorders could positively impact childhood asthma control.
The role of parents in managing asthma in middle childhood: An important consideration in chronic care
2010, Collegian
Asthma is a significant illness for Australian children and their families. In childhood, parents have the primary responsibility for managing asthma on a day-to-day basis, and therefore understanding the management of asthma by parents is important to nursing practice. Middle childhood (5–12 years) is an important time in the lives of children and families with asthma, as children commence school and spend increasing amounts of time away from direct parental care. In order to manage asthma during middle childhood, parents need to understand asthma as an illness, understand the treatment of asthma, be able to monitor and respond to changes in condition, manage other carers, manage asthma in the context of family life and guide the development of self-management responsibility in their child with asthma. While the scope of parent management in terms of asthma knowledge and treatment has been well explored in the literature, less is known about the process by which parents support the development of self-management responsibility in children with asthma.
The Lived Experience of Fathers Who Have Children With Asthma: A Phenomenological Study
2008, Journal of Pediatric Nursing
Asthma is a common chronic illness of childhood and a major cause of school absenteeism and hospitalization. When a child is diagnosed with asthma, parents become responsible for the long-term management of a chronic condition that is characterized by unpredictable and irregular episodes. Much of the research concerning parenting children who have asthma had focused on mothers. Paternal experiences in caring for a child with asthma have received little attention. In this phenomenological study, van Manen's (Researching Lived Experience: Human Science for an Action Sensitive Pedagogy. The Althouse Press: London, ON) method of inquiry was used to explore the lived experience of fathers who have children with asthma. Eight fathers with children aged between 7 and 11 years who had been diagnosed with asthma were interviewed. Five themes were identified: feeling relief in knowing the diagnosis, learning the ropes, being vigilant, living with concern, and being comfortable with asthma management. Understanding the experience of fathers who have children with asthma and gaining insight into their needs and concerns are essential first steps to providing supportive nursing care.
"One Gets So Afraid": Latino Families and Asthma Management-An Exploratory Study
2007, Journal of Pediatric Health Care
Citation Excerpt :
In this study, Latino families described fear, experiences with the acute care environment, lack of knowledge, and strategies and strengths in dealing with their child’s asthma. Some of these themes have been expressed elsewhere and may be related to the stress of having a child with a chronic illness such as asthma (Kieckhefer & Ratcliffe, 2000; Maltby et al., 2003; Trollvik & Severinsson, 2004). Although the experience of caring for sick children (particularly those with asthma) is stressful in any family, the participants in this study faced additional obstacles as low-income, immigrant families.
This study explored Latino family experiences, issues, and needs in caring for a child with asthma as expressed by Latino parents of children with asthma.
Eight families represented by 7 women and 2 men, primarily of Mexican descent, participated in the study. All families had at least one child enrolled in preschools in the East Los Angeles area. The study had an exploratory design and used ethnographic group and individual interview techniques to discover the parents’ experiences in managing their child’s asthma and the meaning asthma has for their families. All interviews were conducted in Spanish.
Several common themes emerged from the data: (a) fear, “I got scared”; (b) the acute care experience, “I was not told what to do, nothing”; (c) knowledge, “I did not know anything about asthma”; and (d) parent alternative strategies or strengths, “We want to do what is best. … we need to be prepared.”
Strength emerged from fear. The parents were resourceful and began developing alternative strategies to assist them in their care for their child with asthma. The findings emphasize the need for more opportunities for culturally sensitive asthma education and community health care resources such as mobile asthma treatment centers and promotora programs.
Improving Care of Inner-City Children with Poorly Controlled Asthma: What Mothers Want You to Know
2018, Journal of Pediatric Health Care
Citation Excerpt :
Qualitative research with urban low-income families likewise showed important findings related to barriers to asthma management such as financial constraints impeding effective home environmental control, concerns about asthma medication adverse effects resulting in nonadherence to guideline-based care, and profound psychological distress in caregivers (Bellin et al., 2017; Laster, Holsey, Shendell, McCarty, & Celano, 2009; Waters et al., 2017). Other qualitative interviews and focus group research with caregivers of children with asthma highlighted the need for increased sharing of asthma information in clinical encounters (Kieckhefer & Ratcliffe, 2000) and, more specifically, improved provider sensitivity to the sociocultural context of minority families (Riera et al., 2015; Tumiel-Berhalter & Zayas, 2006). In-depth interviews with parents further identified strained family relationships and roles because of the intensive nature of asthma caregiving and asthma knowledge deficits as other potential sources of stress (Archibald, Caine, Ali, Hartling, & Scott, 2015; Rydström, Dalheim-Englund, Segesten, & Rasmussen, 2004).
Low-income caregiver perspectives on asthma management are understudied but may illuminate strategies to improve care delivery and child outcomes.
Purposive sampling methods were used to recruit 15 caregivers of children with frequent asthma emergency department visits. Interviews explored how poverty and stress affect asthma management. Grounded theory coding techniques were used to analyze the data.
Participants were the biological mother (100%) and were poor (75% had mean annual income ≤ $30,000). Their children (mean age = 6.9 years) were African American (100%), enrolled in Medicaid (100%), and averaged 1.5 emergency department visits over the prior 3 months. Four themes emerged: (a) Deplorable Housing Conditions, (b) Allies and Adversaries in School-Based Asthma Management, (c) Satisfaction With Asthma Health Care Delivery, and (d) Prevalent Psychological Distress.
Impoverished caregivers of children with frequent asthma emergency department visits describe stress that is multifaceted, overwhelming, and difficult to eradicate. Their experiences underscore the need for improved school-based asthma management and family-centered approaches to health care delivery.

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^☆: Marijo Ratcliffe is Nurse Clinician, Pediatric Pulmonary Center, Children's Hospital and Medical Center, and Lecturer, Family and Child Nursing, University of Washington, Seattle.

^☆☆: Reprint requests: Gail M. Kieckhefer, PhD, ARNP, PNP, Box 357262, University of Washington, Seattle, WA 98195.

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Original ArticleWhat parents of children with asthma tell us☆,☆☆

Abstract

Section snippets

Methods

Parental fears

Generalizability

Journal of Pediatric Nursing

Focus group interview: An underutilized research technique for improving theory and health education

Health Education Quarterly

Psychological factors associated with medication nonadherence in asthmatic children

Journal of Asthma

Advanced design in nursing research

The influence of education on morbidity and mortality in asthma (including the use of open access hospital admission for severe attacks)

Monaldi Archives for Chest Disease

Children and adult perceptions of childhood asthma

Pediatrics

Uncertainty in mother's care for their ill children

Journal of Advanced Nursing

Minimal standards required by children to complete health related quality of life instruments for asthma: A comparison of measurement properties

European Respiratory Journal

Testing self-perception of health theory to predict health promotion and illness management behavior in children with asthma

Journal of Pediatric Nursing

Developing questions for focus groups: Vol. 3

Original Article
What parents of children with asthma tell us☆,☆☆