Parents’ Decision Making During Their Child’s Asthma Attack: Qualitative Systematic Review

Figures & data

Table 1 Inclusion and Exclusion Criteria for Studies Included in the Systematic Review

Inclusion Criteria	Exclusion Criteria
Qualitative methodologies	Quantitative and mixed method designs
Explored parent or carers’ experience of caring for a child during an acute asthma attack at home or in the community	Children not diagnosed with asthma
Children aged 2 to 12 years was the age group of interest. If a study included children aged 2–12 years in addition to older children, the study was still included.	Children aged 13–18 years exclusively
Published in English	Published in a language other than English

Notes: Children aged 2–12 years old were the age group of interest. If a study included children aged 2–12 years in addition to older children, the study was still included. However, if a study only included the 13- to 18-year-old age group it was excluded. We did not want to exclude papers which dealt with children aged 2–12 years of age if they also included children up to the age of 18.

Table 2 Study Characteristics

Study	Country	Aims	Design	Culture/Social Context	Population	Findings
Alzayer et al Asthma patients in Saudi Arabia – preferences, health beliefs and experiences that shape asthma management. Ethnicity & Health. 2020;27(4):877–893.^Citation19	Saudi Arabia	To explore the experience of Saudi participants in managing their asthma and their perspectives about using future pharmacy-based services for asthma management.	Qualitative	Saudi nationality	N= 19 n= 11 Carer of child with asthma n= 8 Adult with asthma	Inadequate self-management behaviours may affect the level of asthma control in people with asthma in Saudi Arabia. Improved primary care models with extensive focus on asthma education are needed to relieve the over-reliance on tertiary care help-seeking models that are currently the norm.
Archibald et al What Is Left Unsaid: An interpretive description of the information needs of parents of children with asthma. Research in Nursing & Health, 2015;38(1):19–28.^Citation35	Canada	To gain insight into the information needs and information deficits of parents of children with asthma.	Qualitative descriptive	Varied, not specific population	N= 21 parents of 23 children 20 mothers 1 father	Parents use an asthma management information hierarchy, starting with the most foundational, recognizing severity; followed by acute management; prevention versus crisis orientation; and knowing“about”asthma.
Arcoleo et al Illness representations and cultural practices play a role in patient-centered care in childhood asthma: Experiences of Mexican mothers. Journal of Asthma, 2015;52(7):699–706.^Citation20	USA	To obtain parents’ perspective of: (1) their experiences of living with a child with asthma, (2) their understanding of the nature of asthma, and (3) how their cultural beliefs influence asthma management.	Phenomenology	Lower socio- economic/Latino (Mexican) population	N= 20 mothers of children aged 5–17 years.	Mothers had a limited understanding of asthma, believed asthma was acute not chronic disease, and had concerns about daily medication use.
Barton et al Experiences of Australian parents caring for children with asthma: It gets easier. Chronic Illness, 2005;1(4): 303–314.^Citation21	Australia	To describe the experiences of Australian parents caring for children with asthma.	Qualitative	Varied, not specific population	N= 21 parents of children aged 2–14 years. Parent not specified	Six themes emerged from parents’ experiences and health beliefs that impacted on their child’s asthma management: emotions and behaviours; coping strategies; disruption to activities; health and treatment beliefs; problems with asthma management; and relationships with doctors.
Bellin et al Caregiver perception of asthma management of children in the context of poverty, Journal of Asthma, 2016;54(2):162–172.^Citation22	USA	To examine how low-income, inner-city parents experience asthma caregiving.	Grounded Theory	Lower socio- economic, African American population.	N= 13 caregivers of children aged 7–12 years. 12 mothers 1 father	Caregivers managing a child with high-risk asthma in the context of poverty indicate the need for ongoing asthma education, increased sensitivity to the complexity of home asthma management, and family-centered interventions that enhance communication and collaboration between caregivers and providers.
Berg, et al “One Gets So Afraid”: Latino families and asthma management—An exploratory study. Journal of Pediatric Health Care, 2007;21(6):361–371.^Citation23	USA	To explore Latino family experiences and needs in caring for a child with asthma.	Qualitative exploratory	Latino, primary Mexican descent population	N= 8 parents 7 mothers 2 father	The experiences of Latino parents of children with asthma were: fear; the acute care experience; knowledge; and parent alternative strategies or strengths.
Borhani et al The experiences of mothers with asthmatic children: A content analysis. Journal of Caring Sciences, 2012;1(3):115–121.^Citation24	Iran	To explore the experiences of mothers of a child with asthma.	Qualitative	Varied, not specific population	N= 10 mothers	Iranian mothers have constant concern, feeling of having an unusual life, the need for help from others, feeling of guilt, and the desire to constantly monitor the child.
Coffey et al Puerto Rican families’ experiences of asthma and use of the emergency department for asthma care. Journal of Pediatric Health Care, 2011;26(5):356–363.^Citation25	USA	To describe the lived experience of Puerto Rican families caring for a child with asthma.	Hermeneutic Phenomenology	Hispanic Puerto Rican population.	N= 10 mothers of children aged 6 months - 18 years.	Puerto Rican parents’ experiences were: The Folklore of Asthma; Culture and the Medicine Woman, being in awe of asthma; praying to god; the decision–time to go; and the ED Environment.
Dickinson et al Managing it: A mother’s perspective of managing a pre-school child’s acute asthma episode. Journal of Child Health Care, 2002;6(1)7–18.^Citation26	N	To examine the experience of mothers in managing their pre-school child’s acute asthma attack at home.	Qualitative descriptive	Varied, not specific population	N= 5 mothers of children aged 2–4 years.	The study reveals that mothers perceive that they are responsible for the management of their pre-school child during an acute asthma episode, a process they described as ‘managing it’. This process involves mother in ‘working on treatment’, ‘making the call’, ‘watching’ and ‘calming’.
Dowell Experiences, functioning and needs of low-income African American mothers of children with asthma. Journal of Pediatric Nursing, 2015;30(6):842–849.^Citation27	USA	To explore experiences, needs and functioning of low-income, African American caregivers of children with asthma.	Qualitative descriptive	Low-income, African American population	15 mothers of children aged 2–14 years.	Three main themes were identified: from the experiences of parents caring for their child with asthma: managing the symptoms; cultural beliefs and values; and culturally competent health care provider.
Gibson-Young et al Interviews with caregivers during acute asthma hospitalisations. Journal of Asthma, 2020;57(7):778–786.^Citation28	USA	To explore caregiver perceptions of home management of childhood asthma in school-aged children who have been hospitalized for asthma.	Qualitative, descriptive	African-American, Caucasian, Hispanic	N= 15, 13 mothers and 2 father, of children aged 5–12 years	Six themes emerged, which included family or caregiver burden, care coordination, certainty or uncertainty continuum, effort to control, sign or symptom recognition, and trigger recognition
Grineski Coping with asthma in the central city: Parental experiences with children’s health care. Journal of Health Care for the Poor and Underserved, 2008;19(1):227–236.^Citation29	USA	To explore how parents of children with asthma cope with health care barriers.	Qualitative	Lower socio- economic, African American or Hispanic population.	N= 38 parents of children aged 4 and 12 years.	The barriers parents faced in obtaining health care were: lack of health insurance; cost of services; transportation; treatment delays; and language/communication issues.
Hudson et al Asthma management in British South Asian children: An application of the candidacy framework to a qualitative understanding of barriers to effective and accessible asthma care. BMC Public Health, 2016;16:510.^Citation30	UK	To illustrate the barriers to optimal care and good asthma control that families experience.	Qualitative	UK-based South Asian religious-ethnic populations.	N= 49 caregivers of children aged 5–12 years. 29mothers 15 father 5 carers	The barriers parents experienced in managing their child’s asthma were, their inability to identify the severity of asthma symptoms and pursuing non-medical advice and guidance about their children’s health from their extended family.
Koenig Pilot study of low-income parents’ perspectives of managing asthma in high-risk infants and toddlers. Pediatric Nursing, 2007;33(3):223–242.^Citation31	USA	To obtain the perspectives of low-income, migrant parents’ on the challenges of managing their children with asthma.	Phenomenology	Lower income, African American or Hispanic populations	N= 5 mothers of children aged 0–3 years.	All single mothers struggled to manage asthma in their crowded conditions, with limited transportation for frequently needed emergency care, difficulty in getting a diagnosis of asthma and the lack of health care availability.
Meng et al Decision-making in children with asthma and their parents. Journal of the American Academy of Nurse Practitioners, 2002;14(8):363–371.^Citation32	USA	To learn how parents of children with asthma make treatment decisions.	Qualitative	Varied, not specific population.	N= 21 mothers of children aged 7–12 years.	Decision making in asthma management is related to several factors: family cohesion, asthma knowledge, locus of control, ability to remain calm and perceptions that asthma is serious.
Shaw et al Living on the edge of asthma: A grounded theory exploration. Journal for Specialists in Pediatric Nursing, 2014;19:296–307.^Citation33	USA	What are the experiences of parents’ needing to visit a hospital or ED department when their child is having an acute asthma attack.	Grounded Theory	Varied, not specific population.	N= 13 parents of children aged aged 0–18 years.	The process families go through trying to prevent and then deal with an asthma attack contain the categories: balancing; losing control; seeking control; and transforming which lead to actions parents take.
Zheang et al Exploring low-income African American and Latinx caregiver perspectives on asthma control in their children and reactions to messaging materials. Journal of Asthma, 2021;25:1–7.^Citation34	USA	(1) Explore the knowledge, perceptions and behaviors of Latinx and African-American caregivers related to their children’s asthma and identify barriers to achieving asthma control; and (2) Elicit caregiver responses to messaging materials intended to help them better recognize uncontrolled asthma and seek timely medical treatment.	Qualitative	Latinx and African-American	N=19	Caregivers generally worried about asthma emergencies more than the daily impairments caused by uncontrolled asthma. Many were uncomfortable using daily controller medications, citing issues of provider trust and side effect concerns. Caregivers did not recognize uncontrolled asthma in their own child, even after viewing messaging materials informing them of symptom frequency criteria.

Abbreviations: NZ, New Zealand; UK, United Kingdom; USA, United States of America.

Figure 1 PRISMA flow diagram of included studies.

Notes: PRISMA figure adapted from Page MJ, McKenzie JE, Bossuyt PM, et al.The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021;372:n71. Creative Commons.¹⁸

Figure 2 Themes and subthemes of past experiences that inform future decisions.

Figure 3 Themes and subthemes: facilitators that drive parents’ to actively pursue medical help.

Alzayer R, Almansour HA, Basheti I, Chaar B, Saini B. Asthma patients in Saudi Arabia – preferences, health beliefs and experiences that shape asthma management. Ethn Health. 2020;27(4):877–893.

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Archibald M, Caine V, Hartling L, Scott S. What is left unsaid: an interpretive description of the information needs of parents of children with asthma. Res Nurs Health. 2015;38(1):19–28.

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Arcoleo K, Zayas LE, Hawthorne A, Begay R. Illness representations and cultural practices play a role in patient-centered care in childhood asthma: experiences of Mexican mothers. J Asthma. 2015;52(7):699–706.

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Barton C, Sulaiman N, Clarke D, Abramson M. Experiences of Australian parents caring for children with asthma: it gets easier. Chronic Illn. 2005;1(4):303–314.

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Bellin MH, Land C, Newsome A, et al. Caregiver perception of asthma management of children in the context of poverty. J Asthma. 2017;54(2):162–172.

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Berg J, Anderson NLR, Tichacek MJ, Tomizh AC, Rachelefsky G. “One Gets So Afraid”: latino Families and Asthma Management-An Exploratory Study. J Pediatr Health Care. 2007;21(6):361–371.

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Borhani F, Asadi N, Mohsenpour M. The experiences of mothers with asthmatic children: a content analysis. J Caring Sci. 2012;1(3):115–121.

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Coffey J, Cloutier M, Meadows-Oliver M, Terrazos C. Puerto Rican families’ experiences of asthma and use of the emergency department for asthma care. J Pediatric Healthcare. 2012;26(5):356–363.

 PubMed Web of Science ®Google Scholar

Dickinson AR, Dignam D. Managing it: a mother’s perspective of managing a pre-school child’s acute asthma episode. J Child Health Care. 2002;6(1):7–18.

 PubMedGoogle Scholar

Dowell JA. Experiences, functioning and needs of low-income african american mothers of children with asthma. J Pediatr Nurs. 2015;30(6):842–849.

 PubMed Web of Science ®Google Scholar

Gibson-Young LM, Aroian KJ, Weglicki LS, Lang JE, Norris CL. Interviews with caregivers during acute asthma hospitalisations. J Asthma. 2020;57(7):778–786.

 PubMed Web of Science ®Google Scholar

Grineski S. Coping with asthma in the central city: parental experiences with children’s health care. J Health Care Poor Underserved. 2008;19(1):227–236.

 PubMed Web of Science ®Google Scholar

Hudson N, Culley L, Johnson M, et al. Asthma management in British South Asian children: an application of the candidacy framework to a qualitative understanding of barriers to effective and accessible asthma care. BMC Public Health. 2016;16:510.

 PubMed Web of Science ®Google Scholar

Koenig K. Pilot study of low-income parents’ perspectives of managing asthma in high-risk infants and toddlers. Pediatr Nurs. 2007;33(3):223–228, 242.

 PubMedGoogle Scholar

Meng A, McConnell S. Decision-making in children with asthma and their parents. J Am Acad Nurse Pract. 2002;14(8):363–371.

 PubMedGoogle Scholar

Shaw MR, Oneal G. Living on the edge of asthma: a grounded theory exploration. J Specialists Pediatric Nursing. 2014;19(4):296–307.

 PubMed Web of Science ®Google Scholar

Zheang M, Rodriguez E, Alvarado C, Correa R, Kahlor L, Matsui EC. Exploring low-income African American and Latinx caregiver perspectives on asthma control in their children and reactions to messaging materials. J Asthma. 2021;1:548.

 Google Scholar

Page MJ, McKenzie JE, Bossuyt PM, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021;372:n71.

 PubMed Web of Science ®Google Scholar