Playing the game: How young people moderate influences in accommodating asthma in their lives

Abstract

This article presents moderating influences, one of the sub-core categories from the theory of accommodating interruptions. This theory emerged in the context of young people who have asthma, explaining how they develop behaviours in their everyday lives (Hughes 2014; Hughes et al., 2017). The aim of this research was to develop a theory on the behaviours of young people who have asthma, in relation to the impact of asthma on the lives and the issues affecting them. This research was undertaken using a classic grounded theory approach. Data were collected through in-depth interviews, participant diaries and clinic consultations with young people aged 11–16 years who had asthma for over one year. Moderating influence accounts for how social influences and social culture affect what young people who have asthma wish to achieve and how they want to be perceived by others. Young people moderate influences by their features or attributes in order to meet their own needs.

Keywords

Adolescents asthma behaviours classic grounded theory healthcare professionals non-adherence young people

Introduction

Adolescence is a time of physical and psychological development resulting in difficulties with incorporating a chronic illness into this life stage (Rydström et al., 2005). Typical adolescent issues are heightened by having a chronic illness that can influence adherence to treatment (Glasper 2008; Hieftje et al., 2014; Lambert and Keogh 2015). It is estimated that non-adherence to treatment is between 43% (Burkhart and Rayens 2005) and 50% (Wales et al., 2011), and the negative effects on health outcomes as a result have been reported. The reasons for non-adherence are multiple and do not appear to follow a uniform pattern (Ahmad and Sorensen 2016). Poor knowledge on asthma has been identified as a factor mitigating against adolescents’ abilities to make decisions about managing their illness and evaluating their own behaviours as a result (Yang et al., 2012). Behaviours are influenced by knowledge, psychosocial support and environmental factors (Orem et al., 2003). Young people who are supported by a range of influences have better control of symptoms. Support is required from parents (Morawska et al., 2012; Rhee Hyekyun 2009; Santos et al., 2012), peers (Pai and Ostendorf 2011; Yang et al., 2010), teachers (Ayala et al., 2006; Vargas et al., 2006) and healthcare providers (Glasper 2011; Williams et al., 2008; Yoos et al., 2005). Facilitating the development of self-care behaviours, using a holistic approach to medication management, role management and identity management (Sattoe et al., 2015), can have an impact on control of symptoms. If young people improve their sense of self-esteem, it impacts on their general behaviour in addition to improving behaviours aimed at managing their asthma (Yang et al., 2012).

In light of this, an investigation into the behaviours of young people who have asthma was undertaken to develop a theory explaining how they manage their day-to-day lives. Accommodating interruptions is the theory that emerged (Hughes 2014; Hughes et al., 2017).

Methods

A classic grounded theory (CGT) approach was used. CGT is a systematic approach to allowing conceptual emergence from data in generating a theory that explains behaviour in resolving the participant’s main concern (Glaser 1978). Data were collected through in-depth interviews (n = 18), participant diaries (n = 5) and from community pharmacy asthma clinic consultations (n = 33). The young people were aged 11–16 years and had asthma for over one year. Participants for interview were recruited from the caseloads of paediatric asthma clinicians in two geographically disparate, large tertiary hospitals in southern Ireland. Interviews were held at participants’ homes and lasted between 30 and 60 minutes; 16 participants without parent(s) were present. These participants were invited to complete a two-week participant diary, which they could return via a prepaid envelope to the author. Participants for the asthma clinics were recruited through Asthma Society of Ireland–associated social media and in-house pharmacy advertisements in the Munster region. Parent(s) were present for the majority of these consultations. Data from the interviews, diaries and consultations were analysed using constant comparative analysis and theoretical coding and memo writing were used to develop the theory as per CGT. Consequently, only concepts that patterned out are presented in the emergent theory.

Results

The focus of this article is on moderating influences, which is one of the subcategories in the theory. Moderating influence is a conceptual explanation of how behaviour is affected by social influences, culture, ambition and perceptions. Social influences play an important role in how young people engage in accommodating interruptions, and the way their behaviours and attitudes are influenced. Young people make and reform judgements regarding the importance of influences throughout adolescence by moderating or filtering their importance or trustworthiness in order to meet their own needs. The importance is not always attributable to credibility and authority, but it is significant in decision-making, trusting others and seeking help. Trustworthiness is important in moderating between different sources of information based on young people’s perceived credibility of the organization or individual(s) providing or advocating it. The reduction in dependency on adults by young people is met with a change in the dominant authority of their influence. Other influences, such as peers, erode this dependency on adults as young people become more autonomous in aspects of their lives. Adult influence does not disappear or become ineffective however, as young people recognize their need for support and seek it from those they deem authoritative and credible.

Young people feel secure and confident that they are satisfying the requirements of their parents, peers or social influences by adjudicating the effect of each influence on their everyday lives. Selected element(s) of what is expected from young people by influential individuals or groups or that can be provided to young people are filtered from those elements that are less essential, desirable or practical. These include support, advice or guidance that are offered, instructions that are issued and rules that are imposed or recommended to be followed. The success or difficulty they experience in accommodating interruptions as a result of this filtering is reflected in the reviewed importance and trustworthiness of the influence on their lives. This is reflected in other aspects of their lives also but is important in how the influence is accredited overall by them.

Parental influence remains important, but their dominance is not present in every area of young people’s lives. An example of this is where parents are highly regarded for some things, such as health advice, and not for others such as relationships. The trusting relationship that developed during the years of childhood dependency remains resolute between young people and mothers in particular in relation to managing their asthma. Young people do not always fully embrace the opportunity to develop their responsibility for asthma management. They retain confidence that their mothers will be available to them if they are uncertain or anxious about how to manage a situation in her absence. They also know that she is their ‘go-to person’ if they are in need of advice or support. Help from mothers is requested openly when verification of decisions or actions is required in order to manage symptoms, but this does not always mean they follow their advice to the letter. This ‘checking back’ confirms the influence mothers retain as advisors during adolescence.

Peers become increasingly influential as young people progress through adolescence, and they try to fit into social groups. Behaviour is influenced by the level of desire to gain acceptance to a particular group, consequently identity is subsumed by association with group identity in order to feel accepted by their peers. The benefits of appealing to the influence of their peers are important in the decision-making process, and this impacts on how young people assimilate new behaviours. Accommodating interruptions becomes more important when part of such a group as it is something that can potentially set them apart as being different from the group. There is security in being part of a group, being accepted and being popular socially. Young people with asthma engage in veiling differences whereby they become selective in exposing aspects of their lives including their health needs if they are unsure how this will be perceived. Acknowledging difference to the group occurs if there is a culture of openness and acceptability, and support is available within the group. Selected members may be aware rather than the entire group in order to get this support.

Young people are judicious about activities the group engages in and gauge the effort of their participation in order to protect themselves from potential asthma-related interruptions. Excuses are made to exclude themselves from activities if they perceive a risk of interruption to be too great. When the activity is enjoyable and positive then young people become socially competitive and exert their own influence on the group. In order to appeal to the group or engage in activities associated with their peers, young people may test the boundaries to ensure their participation and inclusion. The vigilance deferring may be intentional or unintentional and will persist until such time as they find their limit and reach a state of reorientation. Moderating influences can inform how much or how long young people tolerate interruptions in terms of recognizing their effect for participation and inclusion. The greater the desire to participate in an activity or relationships considered significant, the less likely young people are to tolerate interruptions that affect inclusion. The power of peer influences wanes as young people become more autonomous however. They begin to trust their own judgement and develop confidence to make their own decisions regardless of the influence of peers. They are less concerned about the opinions of peers as they develop confidence in their own identity and ability to accommodate interruptions.

The influence of healthcare professionals (HCPs) on young people’s behaviours varies depending on gender, the level of trust in the person and the relationship established over time. Engagement in consultations with HCPs varies. Young people learn how to ‘give them the right answers’ in consultations and refer to it as ‘playing the game’. Young girls are less likely to be involved in consultations with a male HCP as they are more comfortable and less intimidated by females. Although they are more confident with females, young girls remain detached as they know their mother will listen to the HCP and ask questions on their behalf. Young boys remain detached irrespective of whether the HCP is male or female. They resolve to allow their mother participate on their behalf in consultations as she will be their support in the first instance. Both genders agree that HCPs initially try to involve them in consultations, but there is inevitability in the HCPs’ main focus for information sharing is with mothers. Young people are agreeable to this as they do not think the information supplied is personally relevant to their individual lifestyle. Young people perceive consultations as being standardized, where they are offered the same information every time they attend. In spite of this, they recognize that HCPs have expertise in asthma management and trust their professional status. If the young person trusts the HCP to make them feel better, they are willing to take their advice, even if there are other repercussions of the treatment in the short-term:

The GP is perfect for telling me what to do, he gives you the inhaler and you just take it. He always gives you the right stuff. I went mad on the steroids a few years ago when I got them. I ate like a horse too. (Interview12)

Moderating influence is required in relation to other aspects of young people’s daily lives when they engage in activities or roles outside of the direct involvement of their parents and peer group. These range from siblings and adults in regular contact with young people, to aspirational figures such as role models or personalities in sport, music or the media. Mentors or other professionals are powerful if they are involved in assisting young people to meet their goals. A desire to impress or perform to the expected standard is reflected by the behaviour of young people in following advice or direction. This is seen in relation to young people’s regard for moderating influences such as that from teachers, sports and music coaches and HCPs. Enabling young people to perform and be included to their satisfaction earns the individual respect and credibility, and their suggestions or instructions are followed. This is dependent on a shared understanding of what the young people’s goals are however.

If I feel bad before a match I know not to play. The coaches are good they understand and never make me feel bad if this happens. The teachers in school aren’t always this understanding. I have an evil PE teacher who won’t let you stop, or if you do he makes you do jobs for the caretaker. You just have to do it. (Interview 9)

Moderating influence includes how young people base their behaviour on aspirations to perform or appear like their role models. The motivation and desire to perform or be perceived in a certain way is strongly indicative of how young people moderate the importance of various influences on their lives. Consequently the influence of role models is strong throughout adolescence. These range from celebrities who are successful or experts in their particular field, to people who are popular within their social network. Role models are people to aspire to and imitate and can be the motivation to improve or surpass current status or expectations. Role models from sport, music or popular culture are frequently referenced as being the one to copy or follow. Role modelling is an even more powerful motivating influence when the role model has overcome a similar difficulty, such as having asthma, in that they experienced the same interruptions in their lives and reached the heights of success in spite of it.

I know some sporty people with asthma lots of the rugby lads…Ronan O’Gara I think Tommy Bowe too- Christ if they can do it so can I. (Asthma clinic 14)

Moderating influence also includes the sources such as the media and social media in particular. The digital age provides resources devised for young people but which vary in popularity and function. Popularity of these online influences is based on what knowledge or service they provide to young people. Parental control may be evident in the availability of access to these media and social media in an effort to protect them from unregulated, external influences. Some young people experience restrictions on home-based Internet access whereby preadolescents are not permitted to use social media, own smartphones or are supervised when accessing other information online in their homes. Older adolescents moderate what they use these influences for, based on their level of interest in particular subjects or activities. Trust in the site or source of online health information influences their appraisal of its quality, and if the content is accepted or rejected. Young people have limited trust in sources that are not associated with the health service executive or which are recommended by their doctor or asthma nurse.

I’m not bothered with the internet, you don’t know what is good to believe. I just do what the GP or mam tells me to do, I’ve no interest really in looking up anyhow, they tell me if I need it. (Asthma Clinic 5)

Discussion

There is much written about transition from childhood to adulthood and the intricacy of personal, emotional and psychosocial difficulties that typically arise during this period (Borzekowski 2009; Bynum and Kotchick 2006; Wales et al., 2011). The role of parents as influences on the lives of young people is recognized in relation to the transition through adolescence based on the child–mother relationship (Feldman, 2010; Bynum and Kotchick, 2006). Asthma has an impact on the emotional, social and physical functioning in children (Santos et al., 2012). They found that cohesive environments had a positive effect on Health Related Quality of life and psychological adjustment of the young people, leading to better control of symptoms and better adaptive coping strategies leading to increased well-being.

According to the literature, the influence of HCPs differs when examined in the context of consultations. It is recognized that children and young people should be involved in discussions regarding their own health, but the practice varies significantly (Callery 2013; Coyne 2008; Lambert et al., 2008; Newbould et al., 2008; Van Staa 2011). Parents are known to be influential in the level of participation of their children in health-related consultations (Coyne 2008; van Staa 2011). Parents have reported that they are uncomfortable with the idea of healthcare policy that encourages consultations with young people that do not include them (Sasse et al., 2013). In the emergent theory, young people ‘zone out’ as they are not engaged in consultations. Young people do this as they do not perceive the information to be specific to them or their lives, so of minimal use to them in improving their everyday functioning.

In this study, girls were less likely to question their HCPs about their asthma, especially if they were male. Boys, although not concerned about having a female HCP, were equally disengaged in their consultations, relying on their mothers to listen on their behalf. Not asking questions was also identified in the literature (Newbould et al., 2008). Both boys and girls acknowledged that the HCP tries to engage with them, but this is usually for a limited period and then they speak to the parent for the remainder of the consultation. It is incumbent on HCPs to develop better relationships with young people and tailor the consultation to meet the needs of the individual young person rather than giving routine instruction and information if they are to be more involved in consultations.

Conclusion

In accommodating interruptions, moderating influence accounts for how social influences and social culture affect what young people who have asthma wish to achieve and how they want to be perceived by others. Dependency and authority are seen to play a pivotal role in how young people assimilate behaviours from both a positive and reactive perspective and how this influences them overall. Trust and confidence are seen to impact on the value young people place in influences. Influence is exerted by parents, family members, peers, mentors and also socially through traditional media and social media sources. The power and source of influences vary as young people make and reform judgements regarding the importance of influences by moderating or filtering their features or attributes in order to meet their own needs. The importance of influence is not always attributed in terms of credibility and authority, but it is significant in decision-making, trusting others and seeking help.

Implications

It is evident that there are many difficulties associated with the management of asthma by young people. We should not overlook how young people with asthma live their day-to-day lives, incorporating asthma management into their routine. A limitation of existing guidelines on asthma control is that they may not address ‘real-life’ perspectives of young people that take account of their needs. The current disease management guidelines highlight the need for partnership between young people, parents and HCPs in managing asthma and are disease orientated rather than individual orientated which poses a further problem.

Footnotes

Authors’ Note

The term young person in this article refers to children aged 11–16 years.

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

Mary Hughes

References

Ahmad

Sorensen

(2016) Enabling and hindering factors influencing adherence to asthma treatment among adolescents: A systematic literature review. Journal of Asthma 53: 862–878.

Ayala

Miller

Zagami

. (2006) Asthma in middle schools: what students have to say about their asthma. Journal of School Health 76: 208–214.

Borzekowski

DLG

(2009) Considering children and health literacy: a theoretical approach. Pediatrics 124: S282–S288.

Burkhart

Rayens

(2005) Practice applications of research. Self-concept and health locus of control: factors related to children’s adherence to recommended asthma regimen. Pediatric Nursing 31: 404–409.

Bynum

Kotchick

(2006) Mother-adolescent relationship quality and autonomy as predictors of psychosocial adjustment among African American adolescents. Journal of Child & Family Studies 15: 528–541.

Callery

(2013) Communicating with children with asthma. Nursing Times 109: 22–23.

Coyne

(2008) Children’s participation in consultations and decision-making at health service level: a review of the literature. International Journal of Nursing Studies 45: 1682–1689.

Feldman

(2010) The relational basis of adolescent adjustment: trajectories of mother-child interactive behaviors from infancy to adolescence shape adolescents' adaptation. Attachment & Human Development 12: 173–19

Glaser

(1978) Theoretical Sensitivity: Advances in the Methodology of Grounded Theory. Mill Valley, CA: Sociology Press.

10.

Glasper

(2008) Turning up the volume on youth participation. British Journal of Nursing 17: 563–563.

11.

Glasper

(2011) Are young people welcome in the health service? British Journal of Nursing 20: 762–763.

12.

Health Service Executive (2009) HIPE Data 2005–2009 (Executive HS ed.). Health Service Executive, Dublin

13.

Hieftje

Duncan

Fiellin

(2014) Novel methods to collect meaningful data from adolescents for the development of health interventions. Health Promotion Practice 15: 714–722.

14.

Hughes

(2014) Accommodating Interruptions: A Grounded Theory of Adolescent Asthma. Cork: University College Cork.

15.

Hughes

Savage

Andrews

(2017) Accommodating interruptions: a grounded theory of young people with asthma. Journal of Clinical Nursing, 27:211–222.

16.

Kabir

Manning

Holohan

. (2011) Prevalence of symptoms of severe asthma and allergies in Irish school children: an ISAAC protocol study, 1995–2007. International Journal of Environmental Research and Public Health 8: 3192.

17.

Lambert

Glacken

McCarron

(2008) ‘Visible-ness’: the nature of communication for children admitted to a specialist children’s hospital in the Republic of Ireland. Journal of Clinical Nursing 17: 3092–3102.

18.

Lambert

Keogh

(2015) Striving to live a normal life: a review of children and young people’s experience of feeling different when living with a long term condition. Journal of Pediatric Nursing 30: 63–77.

19.

Manning

Goodman

O’Sullivan

, et al. (2007) Rising prevalence of asthma but declining wheeze in teenagers (1995–2003) ISAAC protocol. Irish Medical Journal 100: 614–615.

20.

Morawska

Gregory

Burgess

(2012) Parental beliefs about behaviour problems of their asthmatic children and interventions to support parenting. Journal of Child Health Care 16: 75–90.

21.

Newbould

Smith

Francis

(2008) ‘I’m fine doing it on my own’: partnerships between young people and their parents in the management of medication for asthma and diabetes. Journal of Child Health Care 12: 116–128.

22.

Orem

Renpenning

KML

Taylor

(2003) Self-care Theory in Nursing: Selected Papers of Dorothea Orem. Warren, MI: Springer Pub. Michigan

23.

Pai

ALH

Ostendorf

(2011) Treatment adherence in adolescents and young adults affected by chronic illness during the health care transition from pediatric to adult health care: a literature review. Children’s Health Care 40: 16–33.

24.

Rhee Hyekyun MJBSCJB (2009) Barriers to asthma self-management in adolescents: relationships to psychosocial factors. Pediatric Pulmonology 44: 183–191.

25.

Rydström

Hartman

Segesten

(2005) Not letting the disease get the upper hand over life: strategies of teens with asthma. Scandinavian Journal of Caring Sciences 19: 388–395.

26.

Santos

Crespo

Silva

. (2012) Quality of life and adjustment in youths with asthma: the contributions of family rituals and the family environment. Family Process 51: 557–569.

27.

Sasse

Aroni

Sawyer

. (2013) Confidential consultations with adolescents: an exploration of Australian parents’ perspectives. Journal of Adolescent Health 52: 786–791.

28.

Sattoe

JNT

Bal

Roelofs

PDDM

. (2015) Self-management interventions for young people with chronic conditions: a systematic overview. Patient Education and Counseling 98: 704–715.

29.

Van Staa

(2011) Unraveling triadic communication in hospital consultations with adolescents with chronic conditions: the added value of mixed methods research. Patient Education and Counseling 82: 455–464.

30.

Vargas

Magee

Bushmiaer

. (2006) School-based asthma case finding: the Arkansas experience. Journal of School Health 76: 223–226.

31.

Wales

Crisp

Fernandes

. (2011) Modification and testing of the chronic disease compliance instrument to measure treatment compliance in adolescents with asthma. Contemporary Nurse: A Journal for the Australian Nursing Profession 39: 147–156.

32.

Williams

Powell

Hoskins

. (2008) Exploring and explaining low participation in physical activity among children and young people with asthma: a review. BMC Family Practice 9: 40.

33.

Yang

Huang

. (2012) Relationship among asthma knowledge, behavior management and social adaptation in school-age children with asthma in Taiwan. Nursing & Health Sciences 14: 165–172.

34.

Yang

Sylva

Lunt

(2010) Parent support, peer support, and peer acceptance in healthy lifestyle for asthma management among early adolescents. Journal for Specialists in Pediatric Nursing 15: 272–281.

35.

Yoos

Kitzman

McMullen

. (2005) The language of breathlessness: do families and health care providers speak the same language when describing asthma symptoms? Journal of Pediatric Health Care 19: 197–205.