Accommodating interruptions: A grounded ... - Wiley Online Library

Accepted: 29 April 2017 DOI: 10.1111/jocn.13874

ORIGINAL ARTICLE

Accommodating interruptions: A grounded theory of young people with asthma Mary Hughes MSc, PhD, RCN/RGN, Lecturer1 in Nursing

2

| Eileen Savage MEd, PhD, RCN, Professor

| Tom Andrews MSc, PhD, RGN, Lecturer2

1

Children’s Nursing, School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin, Ireland 2

School of Nursing and Midwifery, University College Cork, Cork, Ireland

Aims and objectives: The aim of this study was to develop an explanatory theory on the lives of young people with asthma, issues affecting them and the impact of asthma on their day-to-day lives. Background: Accommodating Interruptions is a theory that explains young people’s

Correspondence Mary Hughes, School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin, Ireland. Email: [email protected]

concerns about living with asthma. Although national and international asthma management guidelines exist, it is accepted that the symptom control of asthma among the young people population is poor. Design: This study was undertaken using Classic Grounded Theory. Methods: Data were collected through in-depth interviews and clinic consultations with young people aged 11–16 years who had asthma for over 1 year. Data were also collected from participant diaries. Constant comparative analysis, theoretical coding and memo writing were used to develop the substantive theory. Results: The theory explains how young people resolve their main concern of being restricted by Accommodating Interruptions in their lives. They do this by assimilating behaviours in balance finding, moderating influence, fitting in and assuming control minimising the effects of asthma on their everyday lives. Conclusion: The theory of Accommodating Interruptions explains young people’s asthma management behaviours in a new way. It allows us to understand how and why young people behave the way they do because they want to participate and be included in everyday activities, events and relationships. The theory adds to the body of knowledge on how young people with asthma live their day-to-day lives and it challenges some existing viewpoints in the literature regarding their behaviours. Relevance to clinical practice: The findings have implications for developing services to support young people in a more meaningful way as they accommodate the interruptions associated with asthma in their lives. KEYWORDS

accommodating, adolescents, asthma, balancing, chronic illness, Classic Grounded Theory, control, symptoms, young people

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© 2017 John Wiley & Sons Ltd

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J Clin Nurs. 2018;27:212–222.

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1 | INTRODUCTION Asthma is one of the most prevalent chronic diseases in young people globally and continues to rise in this population. For example, in Ireland, 18.9% of 13- to 15-year-olds have asthma, an increase of

What does this paper contribute to the wider global clinical community?

•

The theory can assist practitioners working with young

40% according to the Irish data from the International Study of

people with asthma to understand their behaviours in a

Asthma and Allergies in Children between 1995–2003 (Kabir, Man-

different way than previously understood. This theory

ning, Holohan, Goodman, & Clancy, 2011; Manning, Goodman,

may assist in the design of services and interventions

O’Sullivan, & Clancy, 2007). There is increased morbidity and a mor-

that meet the needs of young people with asthma.

tality rate four to six times higher among young people with asthma than among younger children (Couriel, 2003; Joseph, Havstad, Johnson, Vinuya, & Ownby, 2006). This suggests a poor understanding

•

Provides an alternate view to that of the pervasive discussion in the literature regarding compliance issues.

•

Addresses the needs of young people in particular to symptom control, which is highlighted as being problematic.

of the disease and management of symptoms or poor adaptation to living with the symptoms of asthma. It is also known that young people are less likely to seek medical assistance in an emergency, and this is generally regarded as being a result of poor recognition

influence compliance with treatment (Glasper, 2008). Peer support

of the severity of symptoms (Rhee, Belyea, Ciurzynski, & Brasch,

is influential in self-management of asthma by young people

2009). Young people are seen as having specific issues relating to

(Yang, Sylva, & Lunt, 2010). Support from parents, peers, teachers,

poor compliance with treatment protocols; it is accepted that the

healthcare providers on a consistent basis decreases the feelings

symptom control of asthma among young people is poor (Chang,

of embarrassment and isolation among young people with asthma

2012).

(Knight, 2005). Young people who feel more secure in their family unit have better control of their symptoms as they feel support is available if and when needed (Santos, Crespo, Silva, & Canavarro,

2 | BACKGROUND The management of young people with asthma is highlighted as being a problematic area, and a partnership approach between them and healthcare professionals (HCPs) is promoted to achieve symptom control (GINA, 2012). Symptoms are often over and

2012).

3 | METHODS 3.1 | Design

underestimated by young people as they cannot recall their history

The aim was to explore asthma in the everyday lives of young peo-

of night-time symptoms in particular (Rhee, Belyea, & Elward,

ple and to develop a theory to explain how they resolve their main

2008). There are a number of factors which influence the control

concern. A Classic Grounded Theory (CGT) approach was used. Par-

young people with asthma have over their symptoms, including fail-

ticipants were recruited from the patient caseloads of two paediatri-

ure to comply with treatment, greater exposure to triggers (Schreier

cians with a special interest in asthma working in two large

& Chen, 2008) and lack of personalised asthma plans (Ducharme

children’s tertiary centres, and the community through GP surgeries,

et al., 2011).

Asthma Society of Ireland Pharmacy Clinics, and an online call for

Adolescence is a time of physical and psychological development

participants in a large third-level institution in the south of Ireland. A

resulting in difficulties with incorporating a chronic illness into this

total of 51 young people aged 11–16 years of age participated, rep-

€ m, Hartman, & Segesten, 2005). Compliance is life stage (Rydstro

resenting a range of asthma severity and socio-economic groups.

seen as a major issue and is associated with rebelling as part of the normal developmental process (Wales, Crisp, Fernandes, & Kyngas, 2011). Autonomy seeking is crucial to development in adolescence

3.2 | Data collection

in terms of forming identity and requires parents to facilitate their

The process of theoretical sampling, whereby collecting and analys-

independence (Bynum & Kotchick, 2006). This is important to con-

ing data were carried out simultaneously, took a number of months

sider in terms of young people who have a chronic illness such as

to complete until saturation was reached. Data were collected

asthma. Having an illness may lead to feelings of confusion or fragi-

through 18 interviews with young people, completion of asthma dia-

lity or to an increased risk of bullying and alienation from peers

ries by five participants, and in 33 asthma clinic consultations with

(Rushforth, 2011).

young people. In-depth, open-ended interviews were conducted in

Poor knowledge on asthma has been identified as a factor

participants’ own homes, which typically lasted for 30–60 min and

mitigating against young people’s abilities to make decisions about

were not audio-taped. This is in keeping with CGT where the use of

managing their illness and in evaluating their own behaviours as a

technology is discouraged, as this may restrict the data “spill” from

result (Yang, Mu, Huang, Lou, & Wu, 2012). Typical adolescent

participants and is a distraction for the participants (Glaser, 2011;

issues are heightened by having a chronic illness and can

Glaser & Holton, 2004). Conceptual depth was achieved through the

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process of constant comparative analysis and memoing. Field notes were taken cataloguing observations and interactions during and

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3.5 | Rigour

after the interviews and consultations. Participants were invited to

In Classic Grounded Theory, everything must earn its way into the

record an asthma diary for 2 weeks following the interview; this was

emergent theory; only concepts that relate to each other that

not mandatory for inclusion in the study. Asthma clinic consultations

emerge from the data are in the theory. Adhering to the principles

held by the lead researcher in local pharmacies were typically 15–

of the methodology insures that theoretical development is not

20 min in duration.

influenced by preconceptions or conjecture (Glaser, 2011). The emergent theory in this study was evaluated by adhering to the prin-

3.3 | Ethical considerations Ethical approval was obtained from the relevant research ethics

ciples of the method: fit, work, relevance and modifiability.

•

boards. Specific considerations were given to recognising that young

person, place or time. Voluntary informed consent was obtained

•

from parents of participants, with voluntary consent/assent being obtained from participants.

3.4 | Data analysis Data collection and analysis were carried out simultaneously using constant comparative analysis. Interviews began with a grand tour

oped come from the data so they fit with the data (Glaser, 1978). Fit is how closely concepts fit with the incidents and how thor-

people are a vulnerable group (Duncan, Drew, Hodgson, & Sawyer, 2009; Savage & McCarron, 2009). The theory is abstract regarding

Fit refers to the necessity of ensuring that the categories devel-

• •

oughly the constant comparison of incidents to concepts was done. Work is how the variations in how the problem solving is explained (Glaser, 1978). Variables accounting for what changes behaviours are conceptualised in the theory. Relevance is how it captures the real concern of the participants and is not those of the researcher (Glaser, 1978). Only codes that emerged from the data informed the development of the theory. Modifiability is how the theory can be altered when new relevant data are compared to the existing data (Glaser, 1978).

question to encourage the “spill” from participants. This was a question such as “can you tell me what is a typical day like being you?” The focus of the questions was not on symptom control or medica-

4 | RESULTS

tion management and adherence; instead, it was to learn about how the young people behaved on a daily basis and why. Patterns began

“Accommodating Interruptions” explains how young people with

to emerge after the first few interviews. Patterns emerged by com-

asthma resolve their main concern: that they want to participate and

paring incident to incident and naming them as substantive codes

be included in activities, events and relationships without impedi-

that conceptualised patterns of latent behaviour (Glaser, 2003). Sub-

ment by their asthma. How young people resolve this is by accom-

stantive codes were sorted to find relationships and look for varia-

modating the interruptions caused by asthma to minimise their

tions in what changed behavioural patterns. Conceptual depth was

effects on participation and inclusion. Accommodating Interruptions

achieved through the process of constant comparative analysis and

is a process that develops as young people become more autono-

memoing. Theoretical sampling and selective coding informed the

mous in the everyday management of their own lives, including the

decision to cease data collection as saturation was reached (Glaser,

management of their asthma. This process is influenced by the abil-

2003; Hernandez, 2009). Data from the field notes and diaries were

ity of young people to make decisions, supports available, the influ-

analysed by separating and hand-sorting them and coding the data

ences on them, and the desire and determination to achieve their

into categories. Memo writing facilitated the generation of concepts,

own goals. The pacing of the process is different for individuals

which were further developed by theoretical sampling, enabling the

based on their confidence, experience and support rather than

refinement of categories. The abstraction of codes from data

merely being an incremental achievement with age. The process is

occurred during the selective coding process and saw the emergence

also influenced by their level of capability, skill or depth of under-

of the substantive theory for the first time as the core category and

standing in terms of reaching their optimal level of performance and

subcore categories were identified. The core category resolves the

inclusion.

main concern of the participants (Glaser, 2005; Glaser & Holton,

Young people who have asthma accept that there are interrup-

2005) and is the variable that all other concepts relate to, which

tions as a consequence of their asthma but their main concern is

accounts for the variations in behaviour (Christiansen, 2012). Con-

that they will be restricted by it. They see themselves as young peo-

cepts that did not fit were delimited as the interrelationships

ple who have asthma, not as asthmatic young people. There is an

between categories were refined. Theoretical coding was used to

important distinction to be made between the two, as they do not

integrate the theory by connecting the codes in the emerging sub-

see asthma as something that defines or restricts their daily lives.

stantive theory (Holton, 2010). The literature was used as secondary

Accommodating Interruptions can vary in its transition in terms of its

data when substantive codes were saturated, and was integrated

development, perceived success and its outcomes.

into the theory by constant comparative analysis (Christiansen, 2011; Glaser, 1978).

Accommodating Interruptions is therefore the core category, and all the other categories are related to it. Young people progress

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through the process by engaging in different behaviours that are

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than merely being an incremental achievement with age. The process

interdependent and influenced by how satisfied young people are

is also influenced by the young person’s level of capability, skill or

with their level of participation and inclusion. They simultaneously

depth of understanding. Young people do not intentionally plan their

engage in assimilating, balance finding, moderating influences, fitting

behaviour at all times, with opportunistic accommodating measures

in, and assuming control to accommodate interruptions and maximise

being taken to maintain the status quo in their daily lives. Minimising

their participation and inclusion in activities and relationships. The

or overcoming inexorable interruptions enables the desired level of

progression through the process may not be linear however and

participation and inclusion in everyday activities drives their beha-

young people can go forward and back throughout the process.

viours to gain acceptance. Appearance and image are important as

Assimilating explains how behavioural changes occur in the

they are the first means of gaining acceptance.

transition from being a dependent child to being an autonomous

Accommodating Interruptions explains the patterns of beha-

young person in terms of their asthma management, allowing them

viour young people engage in and assimilate and can be seen in

to participate and be included to their desired level in events,

the related subcategories. Irrespective of actual control of symp-

activities and relationships. It is the first step in accommodating as

toms, young people engage in the process of balance finding,

it is as a result of the recognition that they need to become more

whereby they engage in boundary testing to a greater or lesser

active in self-care regarding their asthma. Assimilating is a prereq-

extent until they find their limit. Balance finding is affected by

uisite of how young people engage and progress in all of the other

influences on young people so they assimilate behaviours in mod-

subcore categories. Balance finding is how young people engage in

erating these influences until they are satisfied with their level of

boundary testing, vigilance deferring, finding the limit and reorien-

participation and inclusion. If the behavioural influence is based

tation. Moderating Influences is conceptualised as how individuals,

more on image concerns, then vigilance deferring gives rise to per-

peers, groups and the media impact on the choices young people

formance interruptions and vice versa. Vigilance deferring is where

make. It is explained in filtering, checking back and trusting. Fitting

there is a lack of priority given to avoiding behaviours that could

in is conceptualised as veiling differences, competing and judging

impact on their asthma control. This includes engaging in risk-tak-

others, as young people with asthma engage in behaviours that

ing behaviours, taking medications in a haphazard fashion without

will allow the participation and inclusion in activities and relation-

the full attention required to self-administer correctly where this is

ships as per their healthy peers in spite of having asthma. Assum-

done under duress. Moderating Influences also includes role mod-

ing control is conceptualised as how the interruptions associated

elling which is based on aspirations of participation and inclusion

with having asthma are accommodated in the transition from

based on that of significant influences on young people’s lives.

dependent child, to autonomous young person. This is explained as

This is related to fitting in whereby young people engage in vari-

transitioning, passivity and reluctant obedience. These subcore cat-

ous levels of veiling based on their self-confidence and their

egories are related and do not occur in isolation. They develop

assessment of the potential reception of differences by people

simultaneously as young people accommodate interruptions in their

they want to appeal to. They do this by gauging the level of toler-

everyday lives.

ance in the group or by the individual and engage in veiling differences

4.1 | Accommodating interruptions: the theory

accordingly.

Functional

performance

is

the

ability

to

participate without undue interruption caused by asthma-related symptoms. In other words, not becoming short of breath, wheez-

Accommodating Interruptions explains how young people with

ing or coughing or requiring the use of reliever medication. Open-

asthma live their everyday lives and achieve their desired level of

ness and visibility are not always options, which are comfortable

participation and inclusion in events, activities and relationships they

or practical for young people based on their social situations. They

wish to be involved in. It is a theory that explains how they live their

may be uncomfortable as they are concerned that their differences

lives without asthma being the defining feature of their identity and

will make them less appealing to those they wish to be associated

ability. It explains how they simultaneously develop behaviours that

with or participate with. Assuming control allows the possibility of

allow the desired level of participation and inclusion in daily activi-

being independent in areas of their lives, including asthma manage-

ties despite potential limitations or constraints caused by actual or

ment, which affects their performance and appearance to a greater

potential consequences of having asthma. They are aware that they

or lesser degree depending on their effectiveness. This increases

have no control over the presence of asthma in their lives, but they

the potential for inclusion in the event, activities and relationships

have some control over the degree to which it impinges on their

young people are interested in pursuing. Young people cannot do

lives. As they become more independent in their lives, behaviours

this in isolation and this is where the social support by parents,

change regarding how they accommodate the interruptions caused

family members, peers, teachers and coaches, and healthcare pro-

by the condition.

fessionals become important if they are to be successful in min-

Interruptions are potentially defining characteristics or events

imising or resolving the interruptions of asthma in their lives.

that disturb the expected or desired pattern of daily life. The pacing

Acknowledgement of the need and acceptance of this support is a

of the process in Accommodating Interruptions is different for indi-

critical factor in developing new behaviours in becoming indepen-

viduals based on their confidence, experience, and support rather

dent in asthma management on an everyday basis.

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4.2 | Assimilating

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of their lives and can lead to conflict at times. For some young people, independence in asthma self-care is nonproblematic as they

Assimilating is the basis of the process in how behavioural changes

are largely self-caring from the time of diagnosis, but it may be much

occur in the transition from being a dependent child to being an

later for others who have asthma since infancy as parents retain

autonomous young person in terms of asthma management. It

control over this aspect of their child’s life. This is an additional

explains how young people simultaneously develop and integrate

interruption in the development of autonomy that must be accom-

behaviours in managing asthma in their everyday lives that allows

modated by young people.

them to participate and be included to their desired level in events,

This process of assimilating is heavily weighted on the facilitation

activities and relationships. Assimilating is dependent on the empow-

or encouragement of autonomy by parents and the prevailing peer

erment of young people as without support they may lack the moti-

and social influences on young people. The more time young people

vation to become more autonomous in their lives. The primary

spend out of the home environment, or away from the prevailing

influence on empowerment is parents, and particularly mothers. If

influence of parents, and mothers in particular, the greater the

mothers facilitate the development of autonomy then young people

requirement to assimilate behaviours. If young people demonstrate a

assimilate self-care behaviours more readily. When young people are

level of self-care and independence in successfully managing their

not facilitated to become autonomous the momentum of assimilating

asthma symptoms then parents are more likely to facilitate their

is slower. This is related to assuming control, as when mothers domi-

assimilating of new self-management behaviours. Parental influence

nate care and influence how young people accommodate interrup-

is also subject to personal ideations of nurturing and protecting irre-

tions, young people are less likely to assimilate new self-care

spective of the young people’s wishes or ability. Some parents, in

behaviours.

spite of their child’s aspiration or success in assimilating self-care

Assimilating is also dependent on the commitment of young peo-

behaviours, are reluctant to facilitate this autonomy as they see their

ple to adopt new behaviours and take more responsibility for their

parental role as the protector. This is perceived by young people

own lives. Motivation to participate or be included in events, activi-

however to be controlling and a reflection of their parents’ lack of

ties and relationships is powerful in determining how young people

trust in them. It is a negative feature of their relationship with their

assimilate new behaviours. Remaining dependent on parents or being

parents and one that makes them unhappy. They endeavour to

unable to maintain a stable and desirable persona to new groups or

demonstrate their ability or trustworthiness to parents until such

peers is associated with the impetus to assimilate self-care beha-

time as they become autonomous in spite of their parents’ misappre-

viours. Confidence is an indicator in how young people assimilate

hensions. The key to explaining behaviour is in understanding the

new autonomous behaviours in their everyday lives. The more confi-

intentions of young people; the greater the perceived success young

dent young people are in their ability and success in Accommodating

people experience as a result of their actions or omissions in Accom-

Interruptions, the more motivated they are in assimilating. Assimilat-

modating Interruptions the more they will assimilate this behaviour

ing is a temporal process, which is transitional based on expecta-

as part of their everyday activity. They achieve their desired level of

tions, ambitions and functions. This varies depending on their

performance and inclusion in everyday activities, minimising the

capability, skill and depth of understanding, rather than merely being

effect asthma has on their lives. This does not always necessarily

an incremental achievement with age. Young people are required to

correlate with what is considered good control in medical terms, but

make a judgement on what their desired level of autonomy is and

it satisfies young people in meeting their everyday objectives of

attempt to realise its enactment. This is difficult in that there can be

Accommodating Interruptions.

tension in relationships where the other party is not in agreement with how the young person wishes to operate. One change in assimilating influences another and progression is not linear as a result.

4.3 | Balance finding

Regression occurs during periods of stress or conflict associated with

Balance finding is the phase in the accommodating process where

daily activities in addition to asthma symptoms and management.

young people transition between stability and instability because of

Assuming control becomes an issue at these times, highlighting the

the interruption of asthma in their lives. Young people engage in bal-

need for those involved to assimilate new ways of Accommodating

ance finding as interruptions associated with asthma become more

Interruptions.

frequent, or their effects cause concern, or if they become their

The context therefore within which assimilating begins varies

responsibility to manage. Balance finding is a tentative process

widely and is dependent on parental facilitation of young people’s

where there are periods of instability in terms of interruptions

autonomy. This autonomy is general in terms of their daily lives, but

related to their asthma that require careful and precise manoeuvring.

for young people with asthma, it includes managing their symptoms

This process is crucial to how young people perform as they strive

also. This requires change in the parenting behaviour typically associ-

for inclusion and acceptance by people they deem important in their

ated with earlier childhood, when the partnership relationship is not

lives. The process of balance finding includes testing the boundaries

equal in terms of general daily activities or indeed asthma manage-

and vigilance deferring, which can be intentional or unintentional,

ment. Redefinition of parenting behaviours does not always keep

until they find their limit of what they or others deem to be accept-

pace with young peoples’ desires, demands or abilities in either facet

able or achievable in terms of performance and inclusion, or achieve

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a state of reorientation. Reorientation is where there is an accep-

happens when interruptions are deemed to be more disagreeable than

tance of certain limitations but an acknowledgement of what is pos-

the effort required to maintain a balance, therefore following this

sible in terms of Accommodating Interruptions associated with

menu of self-care procedures is the lesser of two insults:

having asthma. Performing to the expectations of others in terms of symptom

I know now if I’m going to get sick, I can tell the differ-

management and control becomes difficult if it disturbs the balance

ence. I don’t know when this really happened but I can

acceptable to young people. They are content to manage their

tell. I get uneasy and then feel tight in my chest. I don’t

asthma to the extent that they are unhindered by it. A level of inter-

get a wheeze but my peak flow goes down and I feel

ruption may be acceptable to them, but this does not mean they are

sick. I start to get stuffy and if there is no fresh air I feel

purposefully being noncompliant. As a result of balancing, they are

sick. Summer is worse than winter. I’d notice now if I

resigned to “just getting on with it” and are satisfied with “getting

don’t take my inhalers after a day or two, it’s just not

by” as it is acceptable to them at that time. This can vary from the

worth it anymore. I could only last for two days before

expectations of their parents or HCPs, who want them to behave

getting really stuffed.

(Interview 8)

differently resulting in a difference of satisfaction in relation to levels of control. They perceive symptom management instructions, especially from HCPs, as being for someone else, because they are not tailored to suit their lives, therefore, they do not pay much attention

4.4 | Moderating influences

to them. They listen more to their mothers and assimilate the beha-

Moderating influences explain how young people’s behaviours are

viours she recommends that they deem necessary, in the full confi-

affected by the pervasive culture they socialise in, which changes

dence that if they experience any difficult they can consult her for

what they wish to achieve, and how they want to be perceived by

advice without undue concern about her ability to assist them.

others. The importance of influence is not always attributed in terms

Boundary testing is common among young people with asthma, as

of credibility and authority, but is significant in decision-making,

sometimes their self-care motivation does not equal parental expecta-

trusting others and seeking help. The power and source of influences

tions when the level of supervision decreases. Boundary testing is a

vary as young people make and reform judgements regarding the

conscious behaviour where risks are taken, omissions occur and quick

importance of parental, peer, professional and media influences by

fixes are found. Some young people engage in boundary testing as

moderating or filtering their features or attributes to meet their own

they push themselves to find their limits in terms of physical endeav-

needs. The more trustworthy the influence is perceived to be, the

ours; such as sport or in pastimes, or minimise the extent to which the

more likely young people are to change their behaviours.

use medications and avoid triggers in order to fit in with their peers.

Parental influence remains powerful in adolescence although it

This continues until they find their limit and reach a plateau that

diminishes in time as other relationships develop. Even when pater-

ensures their continued participation and inclusion:

nal influence is strong, maternal influence continues to be more powerful in relation to how young people accommodate interrup-

Some days I am so caught by the asthma I can’t go to

tions. The influence of mothers in particular remains powerful, irre-

training. I get caught and have lots of phlegm if I’m bad

spective of young people’s ages or experiences, as they are

-this is how I gauge it as phlegm is associated with get-

identified as being critical in situations where there is an acute need

ting tight and wheezing then too so it’s bad. I almost

for assistance or guidance:

collapsed on the pitch once when I tried to ignore it. It’s regular that I feel bad and can’t run but I’ve got used to

My mam helps me so much she tells me what to do and

feeling like that and still try to push myself. (Interview 9)

teaches me. I’m only good because of my mam; my dad helps a little bit too. It’s easier now that I’m older. The

In vigilance deferring, young people avoid behaviours that could

Bricynal does not always work so I just have to stop

impact on their asthma control. They purposefully engage in risk-tak-

what I’m doing and wait for it to pass and keep taking

ing behaviours such as smoking, ignoring potential exposures to trig-

the Bricynal, tell mam and go to the doctor if mam says

gers, or where medications are taken under duress, in a haphazard

so. I always ask mam if we are out for lunch or we’re

fashion or without the full attention required to self-administer cor-

out and about for the day.

(Interview 17)

rectly. There is reduced parental supervision so vigilance deferring can go unnoticed by parents. They change behavioural patterns they once

The availability and accessibility of mothers affect the power of

accepted until symptoms arise as a consequence of deferring vigilance.

their influence underlining why they, as opposed to fathers, peers or

This causes them to engage in reorientation whereby they begin

HCPs, are the primary adult influence for young people who have

adhering to a personally recognised set of behaviours once again.

asthma. They are typically the parent who attends to healthcare

These behaviours include adhering to medication management or trig-

issues in childhood and this persists through adolescence, although it

ger avoidance and acknowledging their limits in terms of physical exer-

is in a supervisory capacity rather than directing or dispensing of

tion or potential to participate, in order to minimise interruptions. This

healthcare routines.

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Desire for peer affirmation, inclusion and popularity are also indi-

then. There a lot of fake stuff on there. Mam knows

cators of how young people are subject to moderating influences

when I need to go to the doctor. She knows when I’m

within their social context. Peers become increasingly influential as

sick.

ET AL.

(Interview 13)

adolescence progresses, and the desire to fit in demands conformity to group norms. The more young people wish to belong to a certain grouping the more likely it is that they will adopt some of the associated behaviours of that group. For example, if the group is sporty then

4.5 | Fitting in

it is likely they will want to attend training, participate well, or dress as

Fitting in explains how physical, social and psychological develop-

a follower of that sport. There are shared acknowledgements of cul-

ment as identity and self-concept are established. Young people fit

ture and form which sets that group apart from others, wearing team

in with their peers by highlighting their strengths instead of appear-

colours or following particular music genres are examples of this.

ing different, as this complicates their lives by causing embarrass-

Young people are influenced by the advice they receive from

ment or exclusion. They engage in veiling differences, competing and

HCPs to a varying extent. Trust in HCPs is developed based on their

judging others. Young people endeavour to achieve fitting in even if

success in managing asthma previously, how well they interact with

it predisposes them to unwanted consequences such as exacerbation

young people and satisfaction with the treatments recommended to

of asthma symptoms. They strive to meet the expectations of the

them. They have learned how to “give them the right answers” so

group in order to increase their popularity, assure their participation

that the consultation is easier and refer to it as “playing the game.”

in activities they enjoy, and satisfy social expectations of them.

The power of HCPs’ influence on the young person also determines

Veiling differences prevents labelling and reduces the risk of

their involvement in consultations regarding their health and how

standing out. Difference is not a defining characteristic if it is con-

much of the advice they take on board. They resolve to allow their

cealed as it does not appear to be problematic and does not over-

mother participate on their behalf in consultations, as she will be

shadow other aspects of identity. As self-confidence increases the

their support in the first instance:

process of veiling differences ranges from more to less in regard to managing their asthma. Anticipating is important when young peo-

I attend the GP after a few days if I’m not so well and

ple engage in veiling differences as it allows a level of engagement

then go to the hospital every 6 months for a check-up. I

with peers even if there is the possibility of an interruption. Pre-

know the name of the consultants I’ve seen over the

emptive actions are taken to maximise their potential contribution,

past few years (has a comment about them all, espe-

such as warming up for a sporting activity properly to prevent

cially their tone of voice and how that feels with regard

injury or taking bronchodilators to prevent exacerbation of asthma

to the advice and information they give mother about

symptoms:

the asthma treatment) The doctors do talk a bit to me but talk mostly to my mother. The consultant has a

I’m always discreet about my asthma. I do sprinting at

monotone voice which bores me so I don’t listen to him.

school in PE and it is fine, I don’t take my bubble (aero

I know my mam is listening and taking it all in anyhow

chamber) to school and never will. It’s too big and I

so that’s fine.

couldn’t hide it. I don’t get any slagging about asthma in

(Interview 12)

school though so that’s not an issue, like I have asthma, Assumptions that all young people access traditional media and

eczema and hay fever which is so unfair. I call it ‘the

social media for health related information should be questioned.

whole package deal’ but I just have to deal with it.

Young people do not always regard these sources as trustworthy

Hopefully nobody really notices me.

(Interview 16)

and do not use them as a resource. This demonstrates a level of self-protection and discernment by young people, but could also be

As young people become more independent and self-caring, they

seen as lack of insight into the potential resources available to them.

become less concerned about situations where they openly display

Young people need support in gauging the authority or trustworthi-

differences. They worry less about whether differences are accept-

ness of online influences. An awareness of what is available may not

able or not in their social group. They perceive their difference as

exist if they are not supported in accessing credible information in

less of a factor in their acceptance by their peers and others, as

the online community. Positive influence may never be accessed if it

allowances and accommodations are made by them in accepting the

is deemed that media and social media are untrustworthy, and like-

young people’s asthma as being normal. Displaying differences may

wise untrustworthy influences maybe accepted and replicated if they

also be essential in Accommodating Interruptions as the young peo-

are not gauged as being such:

ple are acutely aware that they require assistance. This makes veiling impossible if they are to remain safe, as the alternative is worse than

I don’t trust websites to tell me what to do with my

any the repercussion of becoming visible. Difference is displayed

asthma; you don’t know who’s writing the stuff. A doctor

when young people are secure in their sense of belonging, when

goes to college for 7 years, anyone who’s trained can

veiling differences is no longer a priority or perhaps even a consider-

give me the stuff, tell me what’s going on there and

ation as they are fitting in to their social groups:

HUGHES

|

ET AL.

I don’t tell people I have asthma, at the start I didn’t tell

I feel that my mum doesn’t fully trust me yet though

anyone. Now I think the more people who know the bet-

and only does so sometimes. If I have to take meds and

ter as they can help me if I get bad I have a strong will

mam doesn’t believe me she makes me take them again

which is good. I don’t care what people think now at the

just in case I’m not telling the truth. This annoys me as I

start I did. Sometimes I have to stop at training, the coa-

just wouldn’t lie about that.

219

(Interview 7)

ches are good. They hold my inhaler for me now they know, after the first time they were a bit scared of it but are fine now.

(Asthma Clinic 23)

The diagnosis of asthma later in childhood results in the greater likelihood of young people assuming control early in adolescence. They accept responsibility for their asthma and do not consider it

Young people engage in competing to enhance social percep-

difficult or inconvenient; it is part of their daily routine like brushing

tions of their ability and prowess, as this makes them more attrac-

their teeth. When mothers remain the dominant force in the provi-

tive as a friend or member of a group. Performance ability is one

sion of asthma care, they dictate when and how preteens engage in

of the defining features irrespective of the context within which

transitioning to assume control of their asthma and how they accom-

the competitive element is present. Young people with asthma

modate interruptions. There is a passive acceptance of instruction

push themselves in an effort to get affirmation and praise, as com-

and direction regarding their health care, and young people are less

peting is seen as a way of eliminating or reducing the effects of

likely to be motivated in assuming control of their asthma manage-

difference.

ment.

Young people with asthma engage in judging to minimise the

There is typically a point when changing schools or in middle

effects of their own differences. Other young people who have dif-

adolescence where most parents and healthcare providers expect

ferences that cannot be veiled are highlighted as being different,

young people to assume control over their asthma management.

such as those with a learning disability or who have a health issue

The transition from no or minimal control to some or full control

that requires complex management such as diabetes. Differences for

is an anxious time as they may be unreliable in anticipating the

these young people, who require the assistance of a special needs

consequences of their actions and omissions because of inexperi-

assistant or requiring insulin injections, cannot be veiled as easily as

ence. This is explained as vigilance deferral where subconscious or

having asthma. They do this to satisfy themselves that they are less

intentional deferral is due to a lack of priority in avoiding beha-

different compared to these individuals, in other words, they are

viours that could impact on their asthma control. Young people do

more “normal” and therefore more acceptable.

not actively try to find a balance in terms of their self-care behaviour and purposefully engage in risk-taking behaviours such as

4.6 | Assuming control

smoking, ignoring potential exposures to triggers, or where medications are taken under duress, in a haphazard fashion. Girls assume

Assuming control is achieved by transitioning, passivity and reluctant

control of their behaviours in managing their asthma to gain

obedience. Assuming control is an incremental process where readi-

acceptance into peer groups. Boys assume control to allow them

ness, motivation, support and awareness are seen to influence the

participate at a competitive level with their peers without fear of

behaviours of young people. Prolonging dependency is the opposite

interruption.

of assuming control and this can be influenced by the parental role

Reluctant obedience is resignation that “this is the way it is” and

and also on young people’s unwillingness or lack of motivation in

that they have “no other choice” as prolonged dependency on others

assuming control. Some young people prolong dependency on their

is no longer feasible or practical. Young people acknowledge that

mothers in particular to manage their asthma. These young people

their mother is not always present when they need her for support,

are often gaining independence from their mothers in other aspects

so in the out of the home environment, they need a set of skills to

of their lives, however, but remain dependent in terms of control

accommodate interruptions themselves. They are also establishing

over their asthma management.

their control over other aspects of their lives, so this is regarded as

Proficiency determines the pace of this transition; the more pro-

an extension of their overall autonomy. This does not mean that

ficient and successful young people are in assuming control over

they stop seeking or accepting support from their mothers, however,

their everyday lives the less they are influenced by the interference

as she remains their go-to person:

or dominance by others. Poor performance in activities or relationships necessitates the involvement of others in a controlling manner

I know myself when the inhalers aren’t enough if I get

and delays the assuming of control by young people until they

caught for breath at matches for if taking the stairs and

demonstrate their ability to accommodate interruptions more con-

gets me out of breath. I go to the GP sometimes but

vincingly. Facilitating and empowering young people to assume con-

mostly I just get tips from my mam like when to take

trol can be a lengthy process for parents and can be part of a

the inhalers and not to take them too much. Helps that

general struggle between the two. Sometimes however it is difficult

mam is a nurse. . ..that’s the best thing and the worst

to demonstrate effectiveness in assuming control as trust has not

thing. She knows a lot. She gives me confidence.

been fully established:

view 1)

(Inter-

220

|

HUGHES

5 | DISCUSSION

ET AL.

Nursing and Medicine. Learning to live with a disease or disorder, and how adjustments are made in order to develop new beha-

The theory of Accommodating Interruptions emerged from data

viours by “accommodating” is evident in the literature (Jerrett &

gathered from young people with asthma about what their main

Costello, 1996; Rocque, 2010; Werezak & Stewart, 2009). Accom-

concern is and how they resolve it. Accommodating Interruptions

modation is discussed within the learning disability literature in

is how these young people minimise the effect of asthma on

terms of resilience, goal setting and adaptation (King et al., 2003;

their daily lives to participate and be included as they wish. They

Schneider, Wedgewood, Llewellyn, & McConnell, 2006). Evident

are concerned about all the same things as young people who

throughout the literature is the need for accommodation of the

do not have asthma, but in addition having to accommodate

individual needs of the child and their family in terms of develop-

interruptions associated with having asthma in their lives. They

ing self-identity (Anschutz, Engels, & Van Strien, 2012; Feldman

worry about the effect interruptions can have on their lives and

€ m et al., 2010, Norris, Kunes-Connell, & Spelic, 1998; Rydstro

how it affects their inclusion and participation in activities and

2005; Smits, Soenens, Vansteenkiste, Luyckx, & Goossens, 2010),

relationships. They appreciate that interruptions are a feature of

normalisation (Daley, 2005; Gray, 2001; Protudjer, Kozyrskyj,

their lives and they cannot disregard them completely so they

Becker, & Marchessault, 2009) and inclusion (Scanlon & Baker,

accommodate the effects of interruptions in their everyday lives,

2012). This is required in order to facilitate the development of

thereby minimising the potential restriction. How they do this

positive self-image and requires accommodations by everyone

differs based on the personal and social circumstances, the

involved in adopting a set of behaviours to allow for the distinct

severity of their illness and the motivation to be successful in

needs of the individual, enabling them to have a sense of place

minimising the effects of the illness on their lives. Assimilation is

in society.

a process whereby there is simultaneous and interdependent

Although there are some similarities the theory extends what is

development of behaviours in dealing with the interruption of

currently known about asthma management in young people.

asthma on their lives. It changes them from being healthy to

Accommodating Interruptions maximises their participation and

being an individual who has to consider having a chronic illness

inclusion in the social world they inhabit, in spite of any difference

and its related treatments in everyday life. Balance finding is

or disturbance caused by having asthma. It is internally motivated

where young people transition between stability and instability in

and executed with or without the assistance of others, but it is

how they accommodate the interruption of asthma in their lives.

developmentally sensitive in relation to adolescence in the context

Moderating influences is how young people’s behaviour is

of having a chronic illness such as asthma. The theory of Accommo-

affected by social influences, the pervasive culture they socialise

dating Interruptions has much to add to the literature in relation to

in, which changes what they wish to achieve, and how they

adolescence as well as to asthma specifically. This theory challenges

want to be perceived by others. Fitting in is associated with

the view of young people as being unmotivated, uninvolved, non-

physical, social and psychological development as identity and

compliant and poorly controlled (Rhee et al., 2008; Schreier & Chen,

self-concept are established. Fitting in is important in gaining

2008; Wales et al., 2011).

social credibility and popularity in adolescence. Assuming control

The theory of Accommodating Interruptions makes a worthwhile

is how behaviours are assimilated in accommodating the interrup-

contribution to the current literature on the lives of young people

tions associated with having asthma from that of dependent

with asthma. The process is conceptualised differently to how young

child, to autonomous young person. This process is conditional

people’s behaviour is presented in the current literature. Much of

on freedom, confidence and ability, and is central to their deci-

the current literature is from the perspective of parents or adults

sion-making on performance and appearance issues.

who are enabling an accommodation by or for a child with distinct

Accommodating is not captured in the literature in the same

physical, educational or psychosocial needs (King et al., 2003; Pro-

theoretical way as here within the substantive theory. In the the-

tudjer et al., 2009; Schneider et al., 2006). The literature was used

ory of Accommodating Interruptions, accommodating refers to the

to support the development of the theory but did not direct data

pattern of behaviours an individual assimilates to allow full and

collection.

active participation in daily activities without limitation by personal constraints. Accommodating refers to incorporating behaviour as natural or normal by making it an intrinsic part of

6 | LIMITATIONS

everyday life. Interruptions are characteristics or events that halt the normal, expected pattern of daily life adding complexity that

Limitations in theory development as a novice researcher were over-

requires consideration to overcome There are similarities with

come by adhering to the methodology of CGT, ensuring the devel-

some themes in the literature but none explain the pattern of

opment of a theory that has fit, work and relevance and are

behaviour in the same way as in Accommodating Interruptions.

modifiable. The theory is relevant to the substantive area but not

Accommodating is a concept dealt with in various ways in the lit-

confined to it. Behaviours that resolve the main concern are

erature depending on contexts and conditions from the fields of

explained, which can be added to in the future, but for now are

Mental

grounded in the data in the substantive area.

Health,

Learning

Disabilities,

Sociology,

Psychology,

HUGHES

ET AL.

7 | CONCLUSION Accommodating Interruptions is the conceptual account of how young people behave in resolving their main concern of being restricted because of their asthma. The theory explains how they assimilate behaviours in maximising their participation and inclusion in everyday activities and events, despite their asthma. The theory explains how and why young people behave the way they do to participate and be included in everyday activities, events and relationships. The theory offers a view which differs from previous research and adds to the development of knowledge in the area. It differs from the descriptions and discussions in the literature relating to young people who have asthma previously. The Classic Grounded Theory approach in this research allows for the discovery the patterns of behaviour providing a new understanding of young people who have asthma. The theory can be tested and used to develop services for young people with asthma. It may also be useful for young people with other chronic illnesses.

8 | IMPLICATIONS FOR CLINICAL PRACTICE The theory can assist practitioners working with young people with asthma to understand their behaviours in a different way than previously understood. This theory may assist in the design of policy, services and interventions that meet the needs of young people with asthma and other chronic illnesses. Developing relationships and individualising the care provided to young people is important if it is to be meaningful for them, and relevant to them. This could encourage young people to have greater engagement in their health care in the future. Understanding the behaviour of young people is important in preparing HCPs to work with them in a meaningful way. The theory can assist practitioners in their consultations with young people and encourage them to broaden the focus on more than the assessment or measurement of symptom control, and look holistically at their behaviours. This will empower the young person to engage with their own care in meaningful partnership with HCPs. The theory may encourage HCPs and students who are learning about the care of young people who have asthma to take a new approach in the consultations with young people and influence their further learning in the area.

CONFLICT OF INTEREST No conflict of interest has been declared by the authors.

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How to cite this article: Hughes M, Savage E, Andrews T. Accommodating interruptions: A grounded theory of young people with asthma. J Clin Nurs. 2018;27:212–222. https://doi.org/10.1111/jocn.13874