Sore and tired. A qualitative study exploring the symptom experience of youth with bronchiectasis

Abstract

This qualitative study was conducted to explore the experiences of youth living with bronchiectasis in New Zealand (NZ). Semi-structured interviews were conducted with youth with bronchiectasis. Key themes were identified using an inductive approach through constant comparative analysis and guided by Thorne’s interpretive description (ID). Fifteen young people of mixed ethnicity (nine females and six males) aged between 13 and 23 years participated. Three key themes ‘sore and tired’, ‘life interrupted and ‘looking after self’ were identified. This paper will focus on ‘sore and tired’ and its three subthemes which describe the participants symptom experience. While there was variability in physical symptom patterns, cough, soreness and fatigue were prominent features impacting physical, emotional and social aspects of day-to-day life. All identified pervasive and profound fatigue as significant. The identification of prodromal symptoms provides opportunity for greater appreciation of the varied and personal symptom experience of young people with bronchiectasis. Early identification of these symptoms and inclusion within management plans for escalating treatment has the potential to improve outcomes, reducing delays in seeking additional medical management and preventing further exacerbation.

Keywords

Adolescent bronchiectasis New Zealand qualitative research

Introduction

Bronchiectasis is a lung disease characterised by bronchial dilation, inflammation and recurrent infection (bpac nz, 2020). It occurs most commonly as a result of previous severe or recurrent respiratory infections (Lesan and Lamle, 2019). The resulting damage to the bronchi leaves the person vulnerable to further infections and progressive lung disease (Chang and Redding, 2019). In most developed countries, bronchiectasis rates among children and young people have declined over time. This is due to an overall decrease in infectious diseases likely related to improvements with childhood immunisations, nutrition, sanitation, living conditions and better access to healthcare and antibiotics (Laverty et al., 2008; McCallum and Binks, 2017). Despite these improvements, bronchiectasis continues to be a significant health issue for many children and young people where the prevalence is found to be highest in low-income countries and among Indigenous populations (Chang et al., 2015; Redding et al., 2014).

In New Zealand (NZ), the rates of bronchiectasis are far higher than other countries that report on prevalence, such as Finland (Saynajakangas et al., 1997) and the United States (Seitz et al., 2010). Recent NZ statistics suggest these numbers continue to increase with the most current population prevalence reported as 180 per 100,000 people (Telfar-Barnard and Zhang, 2019). Those most affected are Māori and Pacifica children and youth and those from the lowest socioeconomic quintile (Munro et al., 2011; Twiss et al., 2005).

Awareness of key symptoms and signs of bronchiectasis are crucial for diagnosis and ongoing management (bpac nz 2020; Chang et al., 2018). Chronic wet and/or productive cough is one of the earliest and most important symptoms signalling the diagnosis. Other symptoms in children and young people can include wheeze, faltering growth, breathlessness and, with more advanced disease, signs of chronicity including chest wall deformity and finger clubbing (McCallum and Binks, 2017). The adult literature similarly describes these common signs and symptoms but additionally includes excessive sputum volume, decreased exercise capacity, haemoptysis and chest pain (Smith, 2017). Symptoms are often described in the context of clinical review and diagnosis rather than the individual’s subjective experience (Chang et al., 2018, 2021; Hill et al., 2019). However, symptoms have the potential to impact many aspects of daily life and play a significant role in the day-to-day experience of living with bronchiectasis (Chang et al., 2015; Dudgeon et al., 2018).

Understanding young people’s experience of bronchiectasis is an important way of informing our understanding of the nature of the condition, its effects, the challenges and the burden of the disease. A more in-depth understanding beyond diagnosis, of how daily symptoms influence management plans, mood, quality of life and psychological status could inform health professionals about what matters most to youth living with bronchiectasis. Although there are several studies that explore this subjective experience among adults with bronchiectasis (Dudgeon et al., 2018; McCullough et al., 2015; Spinou et al., 2013; Wei-jie et al., 2019), there is a paucity of studies exploring the experience from a child and youth perspective. This paper reports on one of the key findings from a doctoral thesis which explored a group of young people’s experience living with bronchiectasis (Blamires, 2020).

Aim

The aim is to explore the day-to-day life experiences of young people living with bronchiectasis.

Methods

Design

A qualitative study using interpretive description (ID) methodology was deemed suitable given the intention of generating knowledge relevant for clinical practice. Purposive sampling was used to recruit youth via intermediaries from professional networks and paediatric/adult respiratory services. They were eligible to take part if there was a confirmed diagnosis of bronchiectasis by high resolution chest CT scan, had fluency in English and were aged between 12 and 24 years of age. Recruitment and interviews occurred over a period of 9 months in Auckland, NZ, from October 2017 to June 2018. Interviews were conducted as part of a doctoral study, by JB (a registered nurse and university lecturer) not involved in their patient care.

Data collection

Youth with bronchiectasis were recruited through professional networks and the specialist paediatric respiratory services. Prospective participants were provided with a written participant information sheet and/or recruitment flyer. If the youth indicated an interest in participating, they were asked for permission for the first author (JB) to contact them and arrange an interview. Interested participants and their parents were provided with an information sheet and consent form. If the potential participant was under 16 years of age, a child assent form was given. Once the potential participant agreed to be contacted, the first author arranged for an interview date and time. Recruitment and interviews occurred over a period of 9 months from October 2017 to June 2018. Face-to-face semi-structured interviews were undertaken with individual participants and analysis occurred concurrently in a variety of different locations based on the participants’ wishes. Participants were invited to select their own pseudonym. Basic demographic information such as gender, age, age at diagnosis and ethnicity was collected. Interviews were digitally recorded and transcribed then edited to a standard word format using NVivo 12 (QSR International Pty Ltd, 2018).

Data analysis

Data collection, coding, analysis, thematic construction and concept development were guided by ID and Morse’s four process cognitive framework which included – comprehending, synthesising, theorising and re-contextualising (Morse, 1994; Thorne, 2016). Following each interview, detailed memos on immediate understandings and personal reflections were documented by JB.

Comprehending occurred through listening and re-listening to the recordings as well as reading and re-reading the data as it emerged and comparing it with initial memos and reflections. Initially, transcriptions were read through in their entirety, to get an overall impression and identify initial themes and broad-based codes and then each transcript was read and re-read and initial themes or clusters of ideas were scribbled along the margins.

Next, the analysis moved to comparing these clusters or themes across the data from all participants, looking for bits that were similar, had a thematic pattern or were a recurring idea (Thorne, 2016). Broad themes were recorded in a mind map and then reviewed multiple times by JB and AD all the while remaining open to the possibilities in the data and constantly asking the questions, ‘Why is this here? What does it mean?’ The next step was to take these initial themes and refine them. Mind and concept maps were utilised to facilitate further identification of patterns and relationships in the data. Discussions between JB and AD continued until a consensus was reached about the key thematic elements. Several iterations were developed before reaching a final conceptual framework.

Ethical considerations

Ethical approval was obtained from the local health boards, university and research ethics committee (AUTEC 17/834 & HDEC 17NTA163AM02). Written informed consent was obtained for all participants, including participant assent and parental consent for those less than 16 years old. Participants selected a pseudonym. Anonymity was preserved by eliminating names and identifiers from transcripts and records.

Rigour

Epistemological integrity was upheld by acknowledging and recognising the experience and disciplinary preconceptions of the researchers, discussing theoretical and personal assumptions and critically reviewing the literature (Thorne, 2016). To enhance credibility, the first author (JB) engaged in self-reflective journaling and utilised triangulation of data sources through the recording of field notes and memos. Two authors (JB and AD) checked and verified the interview technique, data analysis and interpretation with each other and other members of the team. Analytic logic as outlined in data analysis used the four-step cognitive process framework. Finally, open-ended questions, prompts, and verbatim transcription were strategies used to achieve authenticity.

Findings

Fifteen young people aged between 13 and 23 years with a confirmed diagnosis of bronchiectasis participated in the study. Nine females and six males agreed to participate. These participants identified as: NZ European (n = 5), Māori (n = 5), Samoan (n = 2), Niuean (n = 1), Tongan (n = 1) and Tuvaluan (n = 1). The mean age of diagnosis was 8.2 years of age. The interviews all took place at a time of health stability. Table 1 presents characteristics of the participants.

Table 1.

Characteristics of participants (N = 15).

Characteristic	n (%)
Age 12–14 15–17 18–23	7 (50) 6 (40) 2 (10)
Sex Female Male	9 (60) 6 (40)
Ethnicity Māori NZ European Samoan Tongan Niuean	5 (33) 5 (33) 2 (13) 1 (6) 1 (6)

Analysis of their day-to-day experience resulted in three key thematic elements, and 10 subthemes are reported in full within the final thesis and in a recently published article that summarises the full study (Blamires, 2020; Blamires et al., 2021). Due to the important and novel findings relating to the experiences and burden of symptoms described by the participants, this paper will elaborate more fully on the conceptual theme ‘Sore and Tired’. This describes how participants experienced the symptoms of bronchiectasis. Within this theme, three subthemes were identified that relate to the most described symptoms of cough, soreness and fatigue with the discussion that follows illustrating how participants monitored, interpreted and managed these symptoms.

Coughing

Cough featured as a prominent symptom in the participants’ descriptions of daily life with bronchiectasis. The majority described cough as a normal background symptom and so integrated into their life, they did not see it as an overly important feature.

“Coughing…, Um, not really no I don’t really cough much, just sometimes” (Blud, age 15)

Many described how cough was associated with the time of diagnosis – recalling frequent trips to the doctor, admissions to hospital and courses of antibiotics that were all linked to ‘this really bad cough’ or ‘this constant coughing that wouldn’t go away’. They reflected how family members (often their mothers) would take them to the doctor repeatedly because of their constant wet cough. They acknowledged it was constant vigilance from their parents related to concerns that was often instrumental in getting a diagnosis.

“I kept on getting sick and coming into hospital and … they ran tests to try figure out what it was… I would just cough and cough… But my mum knew something was wrong… she begged them to do the tests, the one test and they did it and something came up and I had bronchiectasis yeah” (Leah, age 15)

Cough was also described as a warning signal for ‘getting sick’. Participants noted a change in cough such as increased frequency or increased sputum production provided a way of monitoring bronchiectasis and enabled them to recognise impending illness. Several participants described it as the ‘green slime’ or ‘that green stuff’. This signalled the need to tell someone (usually a parent), increase chest physiotherapy, seek medical assessment and likely start antibiotics.

Participants referred to several experiences that indicated coughing and the production of sputum had a negative impact on their lives. This ranged from feeling inadequate to avoidance of activities and experiencing bullying. This coughing was described as ‘gross’ and/or ‘disgusting’ and held the most potential for social embarrassment.

“So I think for me I was a bit embarrassed at that age because just coughing up phlegm in front of kids and kids are mean. So I just held it in til the end of the day and I’d go home and I’d just yeah do my thing [physio]” (Liz, age 21)

The fear of coughing in front of peers had a big part to play, where they worried their cough would affect relationships and make them appear different from their peers. Coughing was also a hindrance to sports performance. Exercise was a trigger for coughing and for those participants who enjoyed playing sports this was problematic and meant having to swallow or hide while coughing.

“I don’t like going for a run because when I run, I cough and phlegm comes out. So I swallow or hold it in. I am scared to spit it out… It’s yucky, it’s smelly. It’s just yuck” (John Boy, age 15)

Suppression of cough was commonly used as a mechanism for protecting themselves against the social embarrassment.

Feeling sore

The word ‘sore’ was used by every participant to describe some aspect of how bronchiectasis made him or her feel. ‘Soreness’ featured as one of a constellation of symptoms that told them they needed to seek help, increase their treatment, go to the GP or, if they were ‘very unwell’, go to hospital.

“It’s mostly just sore in my chest. Like when I breathe in it hurts, yeah so. When I breathe out its fine but it’s just when I breathe in yeah it’s sore” (Leigh, age 15)

Sometimes it was a sore throat or a sore head that featured but most often participants referred to chest pain. This sensation of ‘feeling sore’ or ‘tight’ in their chest varied in quality and intensity between different participants. Sometimes it was described as ‘sharp’ or as a feeling of ‘fullness’ or a ‘tightness’ in the chest that was uncomfortable. The intensity of the discomfort varied; however, for some, this was extremely painful and debilitating.

“I can’t breathe that well if I have a full chest. It feels like it is full of glass” (Richie, age 13)

Some participants were very specific about the location of pain in relation to where they understood their bronchiectasis to be. They describe their lungs as ‘weaker’ in that location or pinpointed it by saying ‘that is where my bronchiectasis is’ and identified that pain occurred there more frequently. This soreness could also be associated with shortness of breath and a generalised feeling of weakness.

Chest pain would interrupt activities of daily life such as sport, doing housework or playing games with friends. Participants described how they would stop for minute, breathe slowly and then resume activities. For some older participants with more severe disease, soreness invaded many aspects of day-to-day life. They described struggles with doing basic things like cleaning up a room, moving around the house or interacting with family members. For these participants, it was important to recognise what was required to make daily life more tolerable.

Always tired

Fatigue as a key symptom of bronchiectasis permeated every participant’s story. When the descriptions of tiredness appeared in the interviews, we initially thought this might relate to age and stage; however, as more interviews were completed, it became clear that this lack of energy was something more than typical adolescent fatigue. Feeling tired was a symptom common to all the participants at various points during the illness experience, including when they were getting sick, being sick and in the recovery phase.

“No, it [bronchiectasis] doesn’t affect anything… but it makes me tired” (Messie, age 13)

The symptom of being tired often preceded other symptoms. Participants would be told they were ‘getting grumpy’ or ‘you seem tired, you might be getting sick’. Parents often helped them to see the connection between tiredness, mood change and the onset of illness. Many participants talked about how prior to getting sick, they slept a lot and became ‘exhausted from doing nothing’. Others used words such as ‘just tired’, ‘I’m always tired’ or “I get so tired’ to illustrate how they felt prior to an exacerbation. Being able to identify these warning symptoms was part of their journey of learning and helped them to identify when they were ‘feeling normal’ and when there was a change that warranted attention.

“Probably the tiredness is what I would notice first. And I would start feeling unwell and then I might start coughing up mucous and then I’d say parent I’m a bit sick” (Kitten, age 13)

Not all participants noticed the tiredness on its own but instead described how being tired became noticeable when it impacted on daily activities. When participants described these instances, they noted how sickness and tiredness negatively influenced their life because it often meant they had to stop or sit out and therefore appeared different to their peers.

“When I’m not sick I can like do basically everything but when I’m sick I get… like it’s quicker for me to get tired I get so tired” (Kahu age 13)

For most participants, the fatigue was not continuous but intermittent and usually associated with times of acute illness. They also recognised that this feeling of tiredness was different to other kids their age. They described how they would ‘get tired really easily’ and used words like ‘exhausted’, ‘drained’, ‘low energy’, ‘weak’ and ‘all over body tired’. But for two of the older participants, this state of fatigue seemed to be unremitting. There was a sense that as the bronchiectasis progressed, the symptom of tiredness became more prominent, and they acknowledged they were no longer physically able to do what had been achievable in the past. Frustration regarding the life they wanted to live and what they were capable of with their disease was palpable. One participant talked about how she had once had dreams of being a policewoman, but that physically she could not pursue that dream.

“I used to run around a lot. Then now of course… But yeah I, I was tired when I was a little kid but, not as tired as how I am today. It’s, it’s a big difference from when you’re a kid to now. A lot changes. Yeah” (Helena age 23)

Only two participants made clear links between fatigue and shortness of breath, whereas some only hinted there may be a connection. Using the words ‘a tiredness in my chest’ to describe how they felt or how when they were sick how it got ‘harder to breathe’ or they felt ‘breathing tired’.

“Oh I get tired really fast now. Yeah I would say, yeah… because of, of bronchiectasis… Um I, I get, yeah. I guess it’s both. I get tired and shortness of breath” (Liz age 21)

Descriptions seem to imply a connection between being sick, tiredness and shortness of breath. Looking out for and monitoring these symptoms was an important way of managing bronchiectasis and looking after oneself.

Discussion

Young people with bronchiectasis clearly articulated their experiences living with bronchiectasis and the significant impact that symptoms had on their day-to-day life. The findings demonstrated that young people experienced an individual pattern of symptoms leading up to, and during, an exacerbation and clearly articulated understanding between typical daily symptoms and those that indicated they were ‘getting sick’. Increase in coughing, coughing up sputum, changes to the colour of sputum, along with sore heads, throats and chests were identified as preceding an acute exacerbation. This variation in symptom pattern has been demonstrated in adult studies of bronchiectasis but, not yet, described in youth (Dudgeon et al., 2018; Wei-jie et al., 2019).

Participants also demonstrated good awareness to perceive and interpret symptoms which is an important first step towards self-management, decreases the risk of delays in treatment and potentially has a positive influence on adherence to therapy (Mammen et al., 2017; Schofield and Horobin, 2014). Studies in children and adolescents with asthma have linked an inability to accurately perceive symptoms with greater functional impairment and asthma-related morbidity, a greater risk for hospitalisation, more emergency department visits and more missed days at school (Mammen et al., 2017; McQuaid et al., 2007; Rhee et al., 2011). Given the relationship between repeated infections and worsening bronchiectasis, it is a positive sign that participants had good symptom perception.

Fatigue was one of the first warning signs. Tiredness and lack of energy preceded ‘getting sick’ acting as a red flag. Some noticed this symptom on their own, whereas others required some support from parents to help them recognise it. Prodromal symptoms are described as subtle or early symptoms that present before more disease-specific signs and symptoms develop. A study in persons with cystic fibrosis found increase in cough and fatigue symptoms occurred 2 weeks prior to a exacerbation in a group of adult patients (Sarfaraz et al., 2010) and past studies have noted prodromal symptoms in patients with asthma (Edmondstone, 2000; Newton et al., 2013). To date, no studies in which patient awareness of prodromal symptoms that precede exacerbation of bronchiectasis have been described.

Chest pain is minimally described in adults with bronchiectasis (Dudgeon et al., 2018; King et al., 2012). Chest pain did not meet the threshold of the Delphi process to be considered one of the key symptoms described in the consensus definition of exacerbation in bronchiectasis (Hill et al., 2017). King et al. (2012) analysed chest pain and found that non-pleuritic chest pain occurred commonly and was associated with an exacerbation. These same researchers showed an association between chest pain and left lower lobe collapse with pain resolving once the collapse resolved (King, 2009). The novel findings from this study describe chest pain as a relatively common symptom among young people with bronchiectasis during an exacerbation.

Our findings complement previous research addressing fatigue in other chronic conditions in youth, such as cancer, where it is described as having an impact on routines such as school and making interactions with friends and family much harder (Corey et al., 2008); and congenital cardiac disease where the symptoms of breathlessness, fatigue, dizziness and chest pain are described as frustrating and encumbering (Cornett and Simms, 2013). Additionally, fatigue has been reported in patients with cystic fibrosis (Goss et al., 2009).

Interestingly, patient information and websites that describe the symptoms of bronchiectasis include chest pain (and less commonly fatigue). Yet clinicians rarely ask about these symptoms in practice nor do these symptoms appear in the Thoracic Society of Australia and NZ guidelines for chronic suppurative lung disease and bronchiectasis in children and adults (Chang et al., 2010). The findings from this study regarding fatigue and chest pain have not previously been reported in the literature in children and young people and provide new insight into the patients’ experience of symptoms in bronchiectasis.

Limitations

The findings are specific to the experience of 15 young people with bronchiectasis in NZ and therefore may not be generalisable to all other young people with bronchiectasis. However, it is possible there are some commonalities and shared experiences among other young people with bronchiectasis, especially given the commonalities of experiences within this study population. Most participants had been living with bronchiectasis since childhood and potentially the experience may have been different for young people newly diagnosed or who had acquired the condition in late childhood. At the time of the interviews, all the participants (except for one) were well. They were not experiencing an exacerbation of their bronchiectasis and were overall stable which could have influenced the participants’ responses in the interviews. Finally, it should also be acknowledged that the ethnicity of first author JB as a NZ European researcher may have limited or hindered the young participants comfort with openly revealing cultural needs and/or differences during data collection. It is possible that utilising different researchers or research assistants from varied ethnic backgrounds (matching to those of the participants) would have revealed more and/or different data surrounding the influence of ethnicity and culture on day-to-day life with bronchiectasis.

Implications for practice

This study asked young people with bronchiectasis to describe their day-to-day experiences and it provides opportunity for clinical reflection. Participants described unique and individual experiences and have highlighted the very personal nature of the condition. This reminds healthcare professionals of the need to be mindful of these differences and act and plan care collaboratively with the young person and their family. There is no place for a one-size-fits-all approach. Providing an individualised approach to care and supporting the development of self-management skills assist with the transition to adult services. The findings have shown that self-monitoring of symptoms is subjective and individualised in bronchiectasis. Given that preventing and treating pulmonary exacerbations promptly are a key goal of bronchiectasis management, the findings that participants identified prodromal symptoms provide opportunity for greater appreciation of the varied and personal symptom experience of people with bronchiectasis. Asking about and assessing these symptoms will give greater understanding of the disease. Early identification of these symptoms has the potential to improve outcomes if management plans included when to start escalating treatment and reducing delays in seeking medical intervention to prevent an exacerbation.

Conclusion

At the heart of this study was a desire to understand how young people with bronchiectasis experienced day-to-day life. Although this study never intended to focus on the symptoms of bronchiectasis, when asked to talk about their day-to-day life, participants disclosed a great deal about symptoms. The results pointed to significant variability in the physical symptom patterns as well as in the emotional impact among the participants. The results further indicated a potential prodrome to an exacerbation of bronchiectasis and that participants had a strong ability to perceive symptoms. Although tiredness is likely to be an expected symptom when feeling unwell, the prominence of this as one of the most significant symptoms, the degree of fatigue and its universality was surprising. Consideration needs to be given for greater inclusion of these symptoms within current clinical guidelines for young people with bronchiectasis alongside further research on the experience and impact of pain and fatigue within this population of young people.

Footnotes

Acknowledgement

This article contains data and sections of writing taken directly from my doctoral thesis. In addition, I can confirm that I own the copyright to this material and that Tuwhera and AUT Library have no copyright claim on my thesis. The thesis has been cited and referenced within the submitted manuscript.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Julie Blamires

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