Child and caregiver experiences and perceptions of asthma self-management

AbstractAsthma is the most common chronic condition of childhood. Self-management is integral to good asthma control. This qualitative paper explores how children with asthma and their parents perceive asthma, their experience with asthma, and how they manage symptoms, preventions and medications within and outside the home. We undertook 15 focus groups with 41 school-aged (6–11 years) children with asthma and 38 parents. Parents and their children attended the same focus groups. We used thematic analysis to analyse the transcripts. Our findings show the impact asthma can have on children’s social and emotional wellbeing and highlight how reliant school-aged children are on their parents to effectively manage their asthma. Parents reported being unsure when their child’s symptoms warranted visiting their doctor or hospital. Schools were identified as a source of difficulty regarding asthma management; families reported that children may be self-conscious about their asthma and using their inhaler at school. School policies and teachers’ lack of asthma knowledge were reported to exacerbate children’s reluctance to use their inhaler at school. Our results have implications for the design and implementation of children’s self-management interventions for their asthma, particularly when they are at school and away from their parents.

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Acceptability of Serious Games in Pediatric Asthma Education and Self-Management: Qualitative study with a consensual qualitative design (Preprint)

10.2196/preprints.33389 ◽

2021 ◽

Author(s):

Nicole Silva-Lavigne ◽

Alena Valderrama ◽

Sandra Pelaez ◽

Myriam Bransi ◽

Fabio Balli ◽

...

Keyword(s):

Qualitative Study ◽

Focus Groups ◽

Support System ◽

Serious Games ◽

Self Management ◽

Asthma Education ◽

Asthma Knowledge ◽

Children With Asthma ◽

The Impact

BACKGROUND Asthma is the most common chronic pediatric disease. Despite existing tools to manage asthma, 40-55% of children with asthma suffer from uncontrolled asthma. Serious games (SGs) represent a novel approach in promoting asthma education and self-management for children. OBJECTIVE In this qualitative study with an embedded quantitative design, we used focus groups and questionnaires to describe the perceived role of SGs in different aspects of asthma self-management by children and their parents. These aspects include asthma perception and knowledge, the impact of asthma and barriers to asthma self-management, and the support system for asthma self-management. METHODS Five children with asthma and their parents were invited to participate during an organized gaming session. Children and their parents filled out a pre-gaming questionnaire on their medical history and asthma knowledge. They were then invited to test four original SGs prototypes, after which the children answered a post-gaming questionnaire on their asthma knowledge and perception of the SGs. Children and their parents subsequently participated in parallel focus groups which were video- and/or audio-recorded, transcribed verbatim, and analyzed by reaching consensus among members of the research team. RESULTS The mean age of the children was 10.3 year, with 20% being male. Qualitative data from the transcripts were coded into three separate domains: 1) asthma self-management perception and knowledge, 2) impact of asthma and barriers to asthma self-management, and 3) support system for asthma self-management. We specifically explored the perceived roles of SGs within each of these domains. A key takeaway message was identified for each of these three domains: 1) Heterogeneity of asthma knowledge and the ability of SGs to encourage knowledge transfer through games, 2) Consequences and limitations of asthma and the ability of SGs to allow for identification and management of real-life situations through games, and 3) Insufficient support system and the ability of SGs to encourage playing with others for support and shared knowledge. CONCLUSIONS Our study explored the role of SGs in the self-management of asthma as perceived by children and their parents. Our findings support the acceptability of SGs in asthma education and self-management in pediatrics and the necessity for future development in this field.

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Perspectives on managing asthma and facilitators in asthma self-management among Thai school-age children: a qualitative study

Journal of Health Research ◽

10.1108/jhr-09-2019-0207 ◽

2020 ◽

Vol ahead-of-print (ahead-of-print) ◽

Author(s):

Wipada Sangnimitchaikul ◽

Boonjai Srisatidnarakul ◽

Sigrid Ladores

Keyword(s):

Asthma Management ◽

University Hospital ◽

Self Management ◽

School Age Children ◽

Major Theme ◽

School Age ◽

Self Monitoring ◽

Content Type ◽

Management Interventions ◽

Children With Asthma

PurposeThis study explored self-management in the context of asthma experiences of school-age children and the factors that facilitate asthma self-management.Design/methodology/approachThis is qualitative research used in-depth interviews. Purposive sampling was employed to select 15 school-age children with asthma attending the outpatient pulmonary department at university hospital in Thailand. Semistructured in-depth individual interviews were conducted. which were audiotaped and transcribed verbatim. Content analysis was used to analyze the data.FindingsTwo major themes emerged from this study: (1) perspectives on managing asthma and (2) facilitators in asthma self-management. Four subthemes emerged from the first major theme related to views on managing asthma: (1) emphasizing use of an inhaler for asthma, (2) self-monitoring for symptom, (3) difficulties with the daily regimens and (4) family support on asthma self-management. Two subthemes emerged from the second major theme related to facilitators in asthma self-management: (1) confidence in performing asthma care behaviors and (2) asthma communication.Originality/valueThis study described strategies that support asthma management of children in Thailand and provided insight into factors that influence asthma self-management. Findings will inform the development of future self-management interventions for school-age children with asthma.

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Feasibility study of a communication and education asthma intervention for general practitioners in Australia

Australian Journal of Primary Health ◽

10.1071/py09056 ◽

2010 ◽

Vol 16 (1) ◽

pp. 75 ◽

Cited By ~ 10

Author(s):

Smita Shah ◽

Brett G. Toelle ◽

Susan M. Sawyer ◽

Jessica K. Roydhouse ◽

Peter Edwards ◽

...

Keyword(s):

General Practitioners ◽

Controlled Trial ◽

Communication Strategies ◽

Asthma Management ◽

Doctor Patient Communication ◽

Children With Asthma ◽

The Usa ◽

Randomised Controlled ◽

Communication Behaviours ◽

The Impact

The Physician Asthma Care Education (PACE) program significantly improved asthma prescribing and communication behaviours of primary care paediatricians in the USA. We tested the feasibility and acceptability of a modified PACE program with Australian general practitioners (GP) and measured its impact on self-reported consulting behaviours in a pilot study. Recruitment took place through a local GP division. Twenty-five GP completed two PACE Australia workshops, which incorporated paediatric asthma management consistent with Australian asthma guidelines and focussed on effective communication strategies. Program feasibility, usefulness and perceived benefit were measured by questionnaires before the workshop and 1 month later, and an evaluation questionnaire after each workshop. GP were universally enthusiastic and supportive of the workshops. The most useful elements they reported were communication skills, case studies, device demonstrations and the toolkit provided. GP self reports of the perceived helpfulness of the key communication strategies and their confidence in their application and reported frequency of use increased significantly after the workshops. The PACE program shows promise in improving the way in which Australian GP manage asthma consultations, particularly with regard to doctor–patient communication. The impact of the modified PACE Australia program on the processes and outcomes of GP care of children with asthma is now being measured in a randomised controlled trial.

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Creating Community and Belonging in a Designated Housing Estate for Disabled People

Social Inclusion ◽

10.17645/si.v8i3.2806 ◽

2020 ◽

Vol 8 (3) ◽

pp. 66-76

Author(s):

Liz Ellis ◽

Sarah-Anne Muñoz ◽

Katia Narzisi ◽

Sara Bradley ◽

Jenny Hall

Keyword(s):

Social Care ◽

Supported Housing ◽

Emotional Wellbeing ◽

Disabled People ◽

Housing Provision ◽

Social And Emotional ◽

Age Related ◽

Emotional Outcomes ◽

New Community ◽

The Impact

In recent years there has been an ideological push within social care away from segregated housing provision towards supported housing integrated within the wider community (McConkey, Keogh, Bunting, Iriarte, & Watson, 2016; Merrells, Buchanan, & Waters, 2019; Overmars-Marx, Thomése, Verdonschot, & Meininger, 2014). Despite this, many housing solutions for older and disabled people continue to be built on a designated basis, with physical and emotional wellbeing outcomes being both contested and mixed. After reviewing key policy relating to social care housing alongside some of the theoretical and ideological positions, this article explores the social and emotional outcomes of a diverse group of disabled people living with mental health difficulties, physical and intellectual impairments, illnesses and age-related conditions, who moved into a small, purpose-built estate of smart homes. Drawing primarily on qualitative data collected from tenants prior to moving and again seven months following relocation, the impact of moving into the estate on tenants’ sense of wellbeing and feelings of inclusion will be analysed and discussed in relation to efforts to build a new community.

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A New Taxonomy for Technology-Enabled Diabetes Self-Management Interventions: Results of an Umbrella Review

Journal of Diabetes Science and Technology ◽

10.1177/19322968211036430 ◽

2021 ◽

pp. 193229682110364

Author(s):

Deborah A. Greenwood ◽

Michelle L. Litchman ◽

Diana Isaacs ◽

Julia E. Blanchette ◽

Jane K. Dickinson ◽

...

Keyword(s):

Feedback Loop ◽

English Language ◽

Controlled Trial ◽

Self Management ◽

Umbrella Review ◽

Diabetes Outcomes ◽

Management Interventions ◽

Meta Analyses ◽

The Impact ◽

Technology Attributes

Background: A 2017 umbrella review defined the technology-enabled self-management (TES) feedback loop associated with a significant reduction in A1C. The purpose of this 2021 review was to develop a taxonomy of intervention attributes in technology-enabled interventions; review recent, high-quality systematic reviews and meta-analyses to determine if the TES framework was described and if elements contribute to improved diabetes outcomes; and to identify gaps in the literature. Methods: We identified key technology attributes needed to describe the active ingredients of TES interventions. We searched multiple databases for English language reviews published between April 2017 and April 2020, focused on PwD (population) receiving diabetes care and education (intervention) using technology-enabled self-management (comparator) in a randomized controlled trial, that impact glycemic, behavioral/psychosocial, and other diabetes self-management outcomes. AMSTAR-2 guidelines were used to assess 50 studies for methodological quality including risk of bias. Results: The TES Taxonomy was developed to standardize the description of technology-enabled interventions; and ensure research uses the taxonomy for replication and evaluation. Of the 26 included reviews, most evaluated smartphones, mobile applications, texting, internet, and telehealth. Twenty-one meta-analyses with the TES feedback loop significantly lowered A1C. Conclusions: Technology-enabled diabetes self-management interventions continue to be associated with improved clinical outcomes. The ongoing rapid adoption and engagement of technology makes it important to focus on uniform measures for behavioral/psychosocial outcomes to highlight healthy coping. Using the TES Taxonomy as a standard approach to describe technology-enabled interventions will support understanding of the impact technology has on diabetes outcomes.

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How young children learn independent asthma self-management: a qualitative study in Malaysia

Archives of Disease in Childhood ◽

10.1136/archdischild-2019-318127 ◽

2020 ◽

Vol 105 (9) ◽

pp. 819-824

Author(s):

Siti Nurkamilla Ramdzan ◽

Ee Ming Khoo ◽

Su May Liew ◽

Steven Cunningham ◽

Marilyn Kendall ◽

...

Keyword(s):

Qualitative Study ◽

Focus Groups ◽

Primary Schools ◽

Health Centre ◽

Smooth Transition ◽

Self Management ◽

Theory Approach ◽

Individual Interviews ◽

National Medical ◽

Children With Asthma

ObjectiveWe aimed to explore the views of Malaysian children with asthma and their parents to enhance understanding of early influences on development of self-management skills.DesignThis is a qualitative study conducted among children with asthma and their parents. We used purposive sampling and conducted focus groups and interviews using a semi-structured topic guide in the participants’ preferred language. All interviews were audio-recorded, transcribed verbatim, entered into NVivo and analysed using a grounded theory approach.SettingsWe identified children aged 7–12 years with parent-reported, physician-diagnosed asthma from seven suburban primary schools in Malaysia. Focus groups and interviews were conducted either at schools or a health centre.ResultsNinety-nine participants (46 caregivers, 53 children) contributed to 24 focus groups and 6 individual interviews. Children mirrored their parents’ management of asthma but, in parallel, learnt and gained confidence to independently self-manage asthma from their own experiences and self-experimentation. Increasing independence was more apparent in children aged 10 years and above. Cultural norms and beliefs influenced children’s independence to self-manage asthma either directly or indirectly through their social network. External influences, for example, support from school and healthcare, also played a role in the transition.ConclusionChildren learnt the skills to self-manage asthma as early as 7 years old with growing independence from the age of 10 years. Healthcare professionals should use child-centred approach and involve schools to facilitate asthma self-management and support a smooth transition to independent self-management.Trial registration numberMalaysian National Medical Research Register (NMRR-15-1242-26898).

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Qualitative study to identify ethnicity-specific perceptions of and barriers to asthma management in South Asian and White British children with asthma

BMJ Open ◽

10.1136/bmjopen-2018-024545 ◽

2019 ◽

Vol 9 (2) ◽

pp. e024545 ◽

Cited By ~ 2

Author(s):

Monica Lakhanpaul ◽

Lorraine Culley ◽

Tausif Huq ◽

Deborah Bird ◽

Nicky Hudson ◽

...

Keyword(s):

South Asian ◽

Asthma Management ◽

Self Management ◽

Tailored Intervention ◽

Structured Interviews ◽

Positive Role ◽

Asian Children ◽

Children With Asthma ◽

British Children

ObjectiveThis paper draws on the data from the Management and Interventions for Asthma (MIA) study to explore the perceptions and experiences of asthma in British South Asian children using semi-structured interviews. A comparable cohort of White British children was recruited to identify whether any emerging themes were subject to variation between the two groups so that generic and ethnicity-specific themes could be identified for future tailored intervention programmes for South Asian children with asthma.SettingSouth Asian and White British children with asthma took part in semi-structured interviews in Leicester, UK.ParticipantsThirty three South Asian and 14 White British children with asthma and aged 5–12 years were interviewed.ResultsBoth similar and contrasting themes emerged from the semi-structured interviews. Interviews revealed considerable similarities in the experience of asthma between the South Asian and White British children, including the lack of understanding of asthma (often confusing trigger with cause), lack of holistic discussions with healthcare professionals (HCPs), an overall neutral or positive experience of interactions with HCPs, the role of the family in children’s self-management and the positive role of school and friends. Issues pertinent to South Asian children related to a higher likelihood of feeling embarrassed and attributing physical activity to being a trigger for asthma symptoms.ConclusionsThe two ethnicity-specific factors revealed by the interviews are significant in children’s self-management of asthma and therefore, indicate the need for a tailored intervention in South Asian children.

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Agent-based modeling for the self-management of chronic diseases: An exploratory study

SIMULATION ◽

10.1177/0037549717712605 ◽

2017 ◽

Vol 93 (9) ◽

pp. 781-793 ◽

Cited By ~ 3

Author(s):

Sara Montagna ◽

Andrea Omicini

Keyword(s):

Diabetes Mellitus ◽

Type 1 Diabetes ◽

Type 1 Diabetes Mellitus ◽

Chronic Diseases ◽

Agent Based Modeling ◽

Self Management ◽

Agent Based ◽

Management Interventions ◽

The Impact

The impact of mobile technologies on healthcare is particularly evident in the case of self-management of chronic diseases, where they can decrease spending and improve life quality of patients. We propose the adoption of agent-based modeling and simulation techniques as built-in tools to dynamically monitor the state of patient health and provide recommendations for self-management. To demonstrate the feasibility of our proposal we focus on Type 1 diabetes mellitus as our case study, and provide simulation results where the dynamic evolution of signal parameters is shown in the case of healthy and Type 1 diabetes mellitus patients, focussing in particular on the beneficial effects that self-management interventions have on plasma glucose values.

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Effectiveness of a multicomponent self-management program in at-risk, school-aged children with asthma

Annals of Allergy Asthma & Immunology ◽

10.1016/s1081-1206(10)61426-3 ◽

2004 ◽

Vol 92 (6) ◽

pp. 611-618 ◽

Cited By ~ 50

Author(s):

Richard S. Shames ◽

Paul Sharek ◽

Michelle Mayer ◽

Thomas N. Robinson ◽

Elisabeth G. Hoyte ◽

...

Keyword(s):

At Risk ◽

Management Program ◽

Self Management ◽

School Aged Children ◽

Children With Asthma

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Cockroach exposure and childhood asthma: Is the effect an artifact of confounding by stress?

10.21203/rs.3.rs-44826/v1 ◽

2020 ◽

Author(s):

Felicia Rabito ◽

Derek Werthmann ◽

Hua He ◽

Aubrey S. Madkour ◽

Whitney D. Arroyave ◽

...

Keyword(s):

Strong Association ◽

High Stress ◽

Asthma Management ◽

Stress Path ◽

Mediation Effect ◽

Asthma Morbidity ◽

Modifiable Factors ◽

Children With Asthma ◽

Ed Visits ◽

The Impact

Abstract Background Nonpharmacologic interventions for asthma management rely on identification and mitigation of important asthma triggers. Cockroach exposure is strongly associated with asthma morbidity. It is also associated with stress, another risk factor for asthma. Despite high prevalence of both in vulnerable populations, the impact of joint exposure has not been examined. Methods Participants included 173 children with asthma in New Orleans, Louisiana. Cockroach exposure was based on visual inspection using standard protocols. Caregiver stress was measured using Cohen’s 4-item Perceived Stress Scale. Outcomes included unscheduled clinic or emergency department (ED) visits, hospitalization, and pulmonary function. Multivariable logistic regression was performed to assess independent effects of the exposure on the outcome and effect modification was examined in stratified analysis based on stress. Path analysis to explore the mediation effect by stress was performed using a probit link with parameters based on Bayes’ method with non-informative priors. Results Adjusting for stress and other covariates, cockroach exposure was associated with unscheduled clinic/ED visits (aOR = 6.2; 95% CI 1.8, 21.7). Positive associations were also found for hospitalization and FEV1 < 80%. High stress modified the relationship with unscheduled clinic/ED visits (high aOR = 7.7 95% CI 1.0, 60.2, versus normal aOR = 4.1 95% CI 0.8, 21.9). Path models identified direct and indirect effects (p = 0.05) indicating that a majority of the total effect on unscheduled clinic/ED visits is attributed directly to cockroach exposure. Conclusion The strong association between cockroach exposure and asthma morbidity is not due to uncontrolled confounding by stress. The combination of cockroach exposure and high stress, common in urban homes, are modifiable factors associated with poor asthma outcomes.

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