Psychosocial experience of living with severe and uncontrolled asthma as a young adult: a qualitative synthesis
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Abstract
Background Living with severe and uncontrolled asthma can negatively impact on well-being, yet little is known about the psychosocial impact on young adults (age 12–25).
Aim To identify, appraise and synthesise current literature pertaining to the psychosocial experience of living with severe and uncontrolled asthma as a young adult, to generate new knowledge, further conceptual understanding and provide recommendations to help improve long-term outcomes.
Methods We followed a predefined protocol, registered on PROSPERO. We systematically searched for qualitative research which captured the psychosocial impact of living with severe and uncontrolled asthma as a young adult. Using thematic synthesis, data was coded and developed into descriptive and analytical themes.
Results 10 studies with 219 participants were identified and included in the synthesis. 73 codes were then developed into 17 descriptive themes, subsequently forming 5 analytical themes: ‘Living with a constant uncertainty’, ‘The deleterious impact of asthma’, ‘Acquiescence’, ‘A need for support & understanding’ and ‘The constraints of living with asthma’.
Young adults with severe and uncontrolled asthma live with a significant negative impact on their psychosocial well-being. Reported emotions described living with a burden of shame, embarrassment, anxiety, isolation, uncertainty, fear, conflict, lack of control, restriction on life choices and a perceived desire to be normal. These emotions influenced lifestyle choices and adherence to treatment, compounding on physical symptomology. This resulted in a cyclical interplay between the physical and psychological impact of living with severe and uncontrolled asthma.
Conclusion There is clear evidence of a negative psychosocial impact of living with severe and uncontrolled asthma as a young adult. We have also highlighted the paucity of recent literature and provide the rationale for further research, to increase our understanding of the impact and support requirements of young adults with severe asthma to help improve long-term outcomes and quality of life.
PROSPERO registration number CRD42022363201.
What is already known on this topic
Living with severe and uncontrolled asthma imposes a physical and psychosocial burden which can compound on each other. However, there is limited understanding about how living with severe and uncontrolled asthma can affect the psychosocial well-being of young adults.
What this study adds
This study reviews and synthesises the current evidence pertaining to the psychosocial impact of living with severe and uncontrolled asthma as a young adult. It highlights that psychosocial factors have a cyclical impact on day-to-day management and physical symptomology. This could help healthcare professionals to understand day-to-day experiences in this cohort, highlight gaps in current evidence and consider ways to shape future care.
How this study might affect research, practice or policy
The study highlights a dearth of current literature within this field, and we recommend further empirical research to maximise understanding of the support needs of young adults with severe and uncontrolled asthma, to ultimately provide better support and facilitate delivery of personalised care to optimise outcomes.
Introduction
Asthma is a long-term condition characterised by symptoms of wheeze, breathlessness, chest tightness and shortness of breath. It is one of the most common long-term medical conditions affecting approximately 300 million people worldwide1 and affecting one in every 11 children and young adults in the UK.2 Up to 17% of patients with asthma suffer from uncontrolled asthma, which is related not only to disease severity but to perception of disease, psychosocial issues and adherence.3 Severe asthma, defined as having poor asthma control despite daily high-dose inhaled corticosteroids, or where daily oral corticosteroids are required to maintain control,4 has a prevalence of around 4–5% of the total asthma population.3
Being a young adult living with asthma can pose a myriad of challenges in attempting to maintain a balance between living with an illness and the day-to-day reality and everyday challenges of young adulthood. Psychosocial development in this cohort can be complex and in asthma can interplay on physical well-being, disease control and exacerbations.5 6 Having asthma in young adulthood is associated with increased mortality when compared with a healthy population.7 Asthma within this age group is associated with low educational attainment and unemployment.8 9 Young adults with asthma are also at increased risk of anxiety and depression,10 poor adherence to inhaled therapy,8 behavioural and emotional problems11 and poor sleep,12 all of which can have a cyclical impact on physical symptomology.13 Poor asthma control in young adults is also associated with declining lung function,14 and hence increased symptoms and medication requirement, which impacts on psychosocial well-being. Furthermore, young adulthood for some patients with asthma is a time when care is transitioned from paediatric to adult services, where the risk of loss to follow-up and poor engagement increases,15 leaving them without appropriate support at a potentially vulnerable period in their life.
We acknowledge that for young adults with asthma, physical and psychosocial elements intricately interplay on each other; however, it is recognised that living with uncontrolled and severe asthma in adulthood can have a greater negative impact on psychosocial well-being when compared with milder versions of the disease.16 Yet, the psychosocial impact of living with severe and uncontrolled asthma in young adults is poorly understood. In this study, we aim to bridge this gap to identify, appraise and synthesise current qualitative literature following a robust systematic process, to answer the research question ‘what is the psychosocial impact of living with severe and uncontrolled asthma as a young adult?’. We anticipate that in addressing this research question, it will facilitate a better understanding of the psychosocial impact and help to identify gaps in knowledge. Consequently, this knowledge will help to support developing recommendations towards designing future interventions to improve care and long-term outcomes.
Methods
Study design
We undertook a systematic review using thematic analysis to answer the research question ‘what is the psychosocial impact of living with severe and uncontrolled asthma as a young adult?’ formulated using a structured PICO approach. (P) Population—young adults (aged 12–25 years) with severe or uncontrolled asthma, (I) Intervention—any studies including any qualitative or mixed method studies exploring the psychosocial impact of living with severe or uncontrolled asthma as a young adult will be included, (C) Comparison—was not applicable in the context of this study, (O) Outcome—the psychosocial experience of living with severe or uncontrolled asthma as a young adult. The review was registered on PROSPERO (CRD42022363201) in November 2022. This type of research is exempt from requiring formal ethical approval.
Patient and public involvement
Patient and public involvement was not used directly within the context of performing the review; however, preparatory work involving patient focus groups identified this as an area of high importance to young people with asthma.
Search strategy
The search strategy was formulated with support from a medical librarian, using search terms, truncation and Medical Subject Headings for ‘asthma’, ‘young adult’ and ‘psychosocial’ (online supplemental table 1).
The definition of ‘young adult’ has significant variation, depending on the social, behavioural and healthcare context. Within this systematic review, ‘young person or young adult’ incorporated the age range 12–25, to encapsulate as widely as possible the diverse range of ages spanning this definition. The classification of ‘psychosocial’ within the context of this systematic review pertains to the emotional, psychological and social outcomes associated with the demands of living day-to-day with severe and uncontrolled asthma.
Databases searched were MEDLINE, Embase, CINAHL, Scopus, Web of Science, PsycINFO, Google Scholar, Child Development and Adolescent Studies between November 2022 and January 2023, with a subsequent updated search in December 2023.
Papers identified in the search were uploaded to Covidence systematic review software (Veritas Health Innovation) by L-JH. Two researchers (L-JH and SL) worked independently of each other at the first stage to screen the titles and abstracts of each paper using the inclusion and exclusion criteria (table 1), meeting on completion to jointly review and discuss any disagreement(s); any unresolved issues were forwarded to a third reviewer (KL) for a final independent decision.
Table 1
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Inclusion and exclusion criteria
On agreeing on the first stage screening, the identified papers then underwent full-text independent review by both researchers meeting to discuss any conflicts and escalating unresolved issues to the third reviewer. The final selection of papers was quality appraised using the Joanna Briggs Institute qualitative critical appraisal tool,17 all papers were assessed to have a positive response rate of 8 or more to the 10 total appraisal questions (online supplemental table 2) and thereby deemed of good quality.
Data extraction
In alignment with guidance,18 data extraction was performed from all published results sections including direct participant quotes and key concepts found in summaries of results, abstracts and discussions ensuring that all relevant data were included for analysis. Selected data was uploaded verbatim for analysis to NVivo V.12 software (QRS International).
Analysis
Using a framework outlined by Thomas and Harden19 to guide thematic analysis, a three-stage process of inductive synthesis was undertaken. First, line-by-line coding was undertaken by L-JH and SL working independently, screening through all the extracted data to apply codes, meeting regularly to compare and assess consistency of interpretation of codes and prospectively capture code definitions. Second, the development of descriptive themes was undertaken by L-JH and SL working collaboratively to assess and group the codes into descriptive themes. The third stage then involved L-JH and SL working together to assess, interpret and look beyond the descriptive themes to develop new analytical themes to address the research question.
Results
An initial 8612 papers were identified, with 2067 duplicates removed, resulting in 6545 papers for title and abstract screening. This was filtered down to 68 papers for full text screening resulting in 11 papers being identified for final synthesis (figure 1—Preferred Reporting Items for Systematic Reviews and Meta-Analyses chart). Two papers12 20 were combined due to both papers describing results from the same study using the same patient population, allotting a final data set of 10 studies for synthesis and analysis. A summary of the characteristics of each study is presented in table 2, with further detail pertaining to the phenomena of interest, methods of investigation, analysis and themes explored within each study being provided in online supplemental table 3.
PRISMA chart. PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses.
Table 2
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Summary of study characteristics
The studies comprised 219 participants with ages ranging between 8 and 27 years, 50.2% female. Sample sizes ranged from 6 to 55 (mean 21.9). Five studies were performed in the USA, three in Sweden and two in the UK. Data collection was performed through a mixture of methods including in-depth and semi-structured interviews,21–25 focus groups,26 visual illness narrative,12 20 a combination of focus groups and individual interviews27 and a combination of methods.28 Studies25 26 co-captured carer perspectives alongside those of young adults; this carer data was excluded from our analysis.
Analysis of the extracted data procured 73 initial codes which were grouped and developed into 17 descriptive themes (tables 3 and 4). The authors then went beyond the primary data and in seeking to answer the proposed research question, developed five analytical themes including, ‘Living with a constant uncertainty’, ‘The deleterious impact of asthma’, ‘Acquiescence’, ‘A need for support & understanding’ and ‘The constraints of living with asthma’ (table 4).
Table 3
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Analytical themes, descriptive themes and codes
Table 4
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Analytical and descriptive themes with primary source direct quotes
Theme one: a constant uncertainty
A theme of living with constant uncertainty was recognised, highlighting how young adults live with daily and unpredictable symptoms impacting on the ability to live a normal life and to plan for the future.
Participants depicted the negative impact of asthma on their education and career choices, accepting that time off school was inevitable, and that physically active professions were rarely an option. It was also recognised that young adults risked exacerbating their asthma by working in unsuitable environments.
Having limited control over external factors such as environment and exposures increased the fear of exacerbation, which was cyclical in creating uncertainty and negative emotions such as anxiety and panic. Furthermore, feelings of doubt, worry and fear for the future were observed, including a sense of hopelessness and resignation that asthma will be ever present. Participants described a conflict between knowing they need to restrict their lives to control their asthma, such as avoiding environments that can worsen symptoms, against wanting to live a ‘normal’ life. This was seen by adopting a head-in-the-sand approach to their asthma; challenging the disease and symptoms; or accepting they needed to work harder to have a semblance of normality.
Theme two: the deleterious emotional impact of asthma
This theme highlighted the negative emotional impact that living with severe and uncontrolled asthma can have on young adults. A worry of dying and fear of dying while fighting for breath was commonly described across the field. Participants described living with the fear of simple actions such as laughing inducing an exacerbation, invoking feelings of frustration and despair.
Participants described having to live with the stigma associated with being ‘asthmatic’, of people thinking they have a contagious illness or in feeling they were being singled out and treated differently to their peers. This invoked feelings of shame and embarrassment, for example, when needing to use their inhaler or coughing in public. Furthermore, accepting the need to take medications and dealing with side effects such as weight gain was juxtaposed against the internal conflict of wanting to be normal like their peers. Consequently, causing participants to not want to rely on and take medications, this then caused inner turmoil and challenges to medication adherence. However, some participants also recognised that good adherence to treatment could lead to better control, and fewer symptoms and exacerbations.
Theme three: acquiescence
In some of the literature, there was a theme of acquiescence to living with asthma, including learning from previous experience and accepting the status quo, including the need to accept their diagnosis and the need for regular daily medication. This then helped to foster a more positive approach to accepting and living day-to-day with the disease. There was also, in juxtaposition to theme two, an awareness of how asthma has become part of their identity and forged them as an individual, making them more resilient.
Theme four: a need for support &and understanding
This theme acknowledged the complex nature of support requirements from family and caregivers and recognised the negative impact that a lack of understanding could have when seeking support. Examples included being made to feel that the asthma is being used by the young adult as a scapegoat to get out of a given situation or being mocked by peers when facing an exacerbation. This consequently then negatively played on their emotions, inducing feelings such as being misunderstood, weak or seeking attention.
There was an internal conflict recognised between wanting to be independent and being proactive in managing the disease, against the need for familial support. We also recognised differing support need requirements from the young adult cohort in particular, from their parents. This varied between wanting parents present in consultations for moral support to not wanting them present due to seeking greater privacy, independence or through becoming more confident in self-advocating. It was also commonly reported that young adults perceived that their parents’ presence in consultations negatively changed the dynamics of the consultation, with the target of conversation being toward the parent rather than the young adult. The benefit of review by familiar healthcare professionals, who knew the patient and their history was frequently described, with participants expressing frustration in having to communicate their medical history to strangers.
Theme five: the constraints of living with asthma
Both patient-imposed and external factors inflicted constraints on day-to-day life. Living day-to-day with symptoms and the recognition and fear that asthma symptoms, at any point, can flare created trepidation, concern and anxiety. Having to be ever vigilant of impending symptoms influenced, in some instances, a restricted lifestyle through withdrawal from or avoidance of activities. However, in some instances, rather than accept the constraints of asthma on lifestyle, participants took a head-in-the-sand approach and minimised or ignored symptoms. For example, exposing themselves to triggers such as smoke or pets or blaming other factors such as reduced fitness instead of their asthma as a cause of symptoms.
Asthma affected the ability to perform day-to-day activities, invoking emotions such as feeling penalised, isolated and different to peers. Furthermore, disturbed sleep (either through nocturnal waking or fear of asthma flaring) impacted on daily functioning and life quality.
Participants spoke of the need to be seen beyond their diagnosis and wanted to be recognised as more than an individual with asthma. In some instances, participants reported hiding their diagnosis or symptoms to avoid standing out from the crowd.
Discussion
Through undertaking a qualitative systematic review and thematic synthesis of papers selected through a rigorous and transparent process, we have undertaken to our knowledge the first known qualitative systematic review and synthesis exploring the psychosocial impact on young people living with severe and uncontrolled asthma. We have combined the voices of participants to create a rich narrative that identifies the often-negative ramifications of living with severe and uncontrolled asthma as a young adult.
We believe that this review has given unique insights by focusing on young adults, whose opinions may be missed in work focused on paediatric or adult data sets. Through a robust search strategy, we have clearly identified age-specific problems and support requirements.
This review has been fundamental to bridging the current dearth in knowledge in this area. We have recognised that while there are negative ramifications of severe asthma on psychosocial wellness, there is also a cyclical interplay of psychosocial well-being on physical symptomatology. A greater understanding of this interconnect is important in helping to improve long-term outcomes.
We have highlighted in our review that young adults have a fear of death and dying due to their asthma. It is known that asthma mortality outcomes in adolescents are reported to be double that of comparative younger cohorts.29 The National registry of asthma deaths30 in 2014 highlighted that 9% of total asthma deaths (where two-thirds of deaths were potentially avoidable) occurred in the 10–19 years old group. Furthermore, a report commissioned by the Nuffield Trust identified that in the age range 15–19 the asthma mortality rate in the UK was the second highest internationally.31
Currently, care provision in young adulthood transitions from that of a child and family-centred approach to an adult-centred approach to care, trying to foster young adult autonomy in self-management. However, within this review, the theme ‘a need for support and understanding’ highlighted a mixture of required support needs, with some participants articulating the need for parental support within consultations, whereas others reported preferring greater independence, autonomy and privacy. We have highlighted the patient-perceived importance of ensuring strong professional relationships with healthcare professionals who they trust and know their history and preferences to prevent repetition and provide greater support and understanding (theme four). This was similarly recognised in a qualitative study32 exploring the lived experience of transition for 16 young adults with severe asthma, which highlighted negative experiences in transferring into adult care services, which reported that leaving an area of familiarity (paediatrics) left young adults feeling unsupported, isolated and less monitored. Consequently, this was perceived to impact on healthcare interaction, engagement and trust. It is recognised that transition into adult care is a period of vulnerability and risks disengagement with services. A retrospective study identified that approximately 2 years post transfer into adult specialist services, 25% of young adults with asthma were lost to follow-up,15 leaving them potentially unsupported at a vulnerable period in their life. Ultimately, transition is not solely about the transfer of care but about the delivery of age-specific care, based upon individual support needs. This study has clearly identified age-specific support needs in this cohort and advocates for appropriate training of healthcare professionals.
Poor adherence to therapy increases the risk of exacerbation, admission and also costs 3.7 times more than managing well-controlled asthma.33 Young adults have a reported high prevalence of poor adherence to therapy. A systematic review in 202234 exploring the prevalence and predictors of adherence to inhaled steroids within a young adult asthma cohort (age 15–30) highlighted that adherence was as low as 28%. Within the analytical theme ‘the deleterious emotional impact’, we have recognised the emotional drivers of adherence to therapy, including concerns surrounding side effects (weight gain) and a fear of developing a dependence on medications, as well as a recognition of shame and embarrassment in taking medications in front of peers. In exploring adherence in adolescents and young adults,25 a general perception was that the embarrassment of using inhalers when with peers became easier and more comfortable with age and confidence. However, contrary to this belief, we have recognised within our review that young adults become more self-conscious as they become older. Furthermore, this is supported by a systematic review that has highlighted that adherence worsens in young adulthood.34 A qualitative systematic review exploring youths’ experience of self-managing asthma35 highlighted that while young adults understood the need to take medication, there was limited understanding and education as to why it should be taken, inferring a requirement for increased educational support combined with a shared decision-making approach to care. It is therefore proposed that further research into this area, focusing on adherence support needs, is necessitated.
This review has identified that adherence to therapy can be influenced through disease acceptance and previous experiences; however, this often occurred in association with the negative experience of an exacerbation, admission or being advised of a deterioration in lung function. The recognised challenge faced as healthcare professionals is how this vulnerable group can be supported to take ownership of both their diagnosis and treatment while preventing a deterioration in physical health or life-threatening exacerbation. Doing so will help to reduce and potentially eliminate some of the negative psychosocial impacts reported in this review.
We have highlighted the negative impact of asthma on educational, social and financial elements of life, which added to a constant uncertainty and fears regarding the future. This is supported by data on 683 716 children and young people (aged 4–19) in Scotland,36 which identified that children with asthma had an increased risk of hospitalisation and consequently were more likely to have: greater educational support needs; worse examination outcomes; and a higher rate of absenteeism when compared with healthy peers. Furthermore, in exploring the perceived challenges of living with uncontrolled asthma as a youth in London,37 it was recognised that asthma had a significant impact on vocational opportunities, it hindered the capabilities to undertake physical roles and sleep deprivation secondary to asthma symptoms was reported to affect work quality. Additionally, potential exposure to substances at work limited work opportunities, with poor support from employers regarding their health being reported.
The review highlighted that the strongly expressed desire to live what is perceived as a ‘normal’ life had a significant impact on the inter-relation between thoughts and behaviour, with the worry of being different from peers resulting in a ‘head-in-the-sand’ approach to ignoring symptoms and diagnosis, or risk-taking behaviour such as exposure to triggers such as smoke, animals or medication avoidance. This consequently invoked a vicious cycle of placing participants at risk of exacerbation, which then incurred the reported negative feelings of living with uncertainty, being singled out as different, shame, embarrassment, anxiety, isolation, uncertainty, fear and lack of control. The synthesis has also highlighted the day-to-day internal conflict of accepting the diagnosis, recognising symptoms and taking medication, while acknowledging the reality of asthma, suggesting a difficulty in accepting the diagnosis and limitations.
This study is not without its limitations. Of the papers retrieved, the publication dates ranged from 1997 to 2022 with only four papers being published in the last decade and five papers dated beyond 10 years. This consequently may not be truly representative of the problems and needs faced by the young adults of today due to recent societal and cultural changes, for example, the increased prevalence of e-cigarettes and vaping within this age group38 and the significant changes to severe asthma management, including the exponential growth of biological therapies, which have revolutionised the care and treatment of patients with severe asthma.39 Furthermore, and likely due to the limitations imposed by word counts of journals when writing qualitative papers, it was sometimes difficult to extrapolate asthma severity and age range, resulting in the omission of some papers to work in alignment with the predefined protocol. In the initial stages of searching, we used multiple descriptors of psychosocial to reflect its numerous connotations. However, this yielded an unmanageable return on articles, requiring the term psychosocial to be re-refined (and search protocol amended) to include the terms as highlighted in online supplemental table 1. While this was necessitated for practicable reasons, it may have impacted on retrieval of papers significant to the enquiry.
In summary, this review has provided a detailed rich narrative to address the current gap in knowledge in this cohort pertaining to understanding the psychosocial impact of living with severe and uncontrolled asthma, highlighting that living with severe asthma as a young adult can impose negatively on psychosocial well-being through a combination of multiple factors. This evidence is important in that young adults are a distinct population within their own right deserving of care appropriate to their needs and challenges. While young adulthood is a complex time in life, it also provides a significant opportunity to support and establish positive health behaviours.
We recognise that there is a dearth of up-to-date research pertaining to this cohort. While this evidence gap exists, attempts to target care specific to this age group will be ineffective and thereby strengthen the argument for further research within this field to develop a deeper comprehension, to understand the day-to-day challenges of living with severe and uncontrolled asthma and the required support needs of this cohort. Augmenting our understanding will ultimately help to inform future intervention development and, longer-term, facilitate delivery of age-appropriate care specific to the needs of young adults with severe and uncontrolled asthma, improving care delivery and outcomes.
Contributors: All named authors meet the criteria of authorship and contribution as defined by the ICMJE. SF is guarantor of this. L-JH conceived the original topic of pursuit and developed the protocol for the systematic review with input from SL, SF, MM and KL. L-JH undertook the original literature searches. L-JH and SL worked in isolation from each other to initially review titles and abstracts, then full text review and critically appraise the identified papers. KL worked as the third reviewer where there was disagreement in inclusion/exclusion of papers. L-JH and SL developed the codes, descriptive and analytical themes. L-JH wrote the manuscript with contributions from SL, SF, MM and KL.
Funding: The Manchester University Foundation NHS Trust Charity is funding authors LJH and SL to undertake their PhDs
Competing interests: COI-Non to declare in relation to this work, outside of this work in the last 36 months, L-JH as the lead author has received Consultancy fees from AstraZeneca and GSK. Lecture fees from AstraZeneca, GSK and Sanofi. Advisory board fees from AstraZeneca and GSK, support to attend conference from Sanofi, GSK and AstraZeneca, fees direct to my institution from Teva for manuscript writing and medical equipment from NuvoAir direct to my institution. SL, SF, MM and KL, none declared.
Provenance and peer review: Not commissioned; externally peer reviewed.
Supplemental material: This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.
Data availability statement
Data are available upon reasonable request. Data are available on reasonable request.
Ethics statements
Patient consent for publication:
Not applicable.
Ethics approval:
Not applicable.
Acknowledgements
Thank you to The Manchester University Foundation NHS Trust Charity who is supporting authors L-JH and SL to undertake their PhDs, undertake and deliver this research.
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