Sally had reduced agency as a result of her inhaler being not accessible and controlled by her grandmother. This theme brings together different children’s experiences to demonstrate how agency in decision-making and autonomy is certainly reduced when access to inhalers are limited, in particular school appears to be an environment which discourages and
impinges on a child’s ability to make an autonomous decision to self-manage their own health.
Figure 12: Child accessibility to inhaler: school versus home
HOME 1 2 6 7 8 3 4 5 SCHOOL 2 6 1 8 3 7 4 5 Key child 1 Dean0 2 Nathaniel 3 Alicia 4 Sally 5 Amanda 6 Nicole 7 8 Julie Paul
School reduces child agency and self-management
Child agency can be affected by the environment. The family maps (Figures 4 – 11)
demonstrated how the relationship with a parent can hinder or support the child’s agency. The following extracts present findings of how the school systems can also hinder or support the agency of a child, where in a different context is able to self-manage asthma care
decisions: Complete autonomy Free access to inhaler as required No autonomy, Does not control access to inhaler, only accessible with permission
‘I have my own ‘carry case’ for my inhalers. I take my inhaler when I am wheezing or coughing. Running can start my asthma off so I will ride my bike whilst my mum and sister run. Brown inhaler (preventer) is morning and night and my blue (reliever) inhaler is 20 minutes before exercise... need to ask my teacher if I need my inhaler at school because they are kept in her drawer. The teacher makes sure we all take our inhalers outside when we are doing P.E’ Nicole 11
‘She is in charge of her preventers and inhalers. She has been doing it for about 12 to 18 months. She doesn’t avoid specific triggers. She will just use her inhaler if
symptoms start following exposure to the trigger. The accessibility of her inhalers probably started the self-management’ Jillian, mother of Nicole 11
Nicole and her mother acknowledge that Nicole is able to demonstrate agency in all aspects of decision-making for their asthma management but Nicole’s extract highlights how the school processes ‘thins’ the agency she is able to demonstrate. Nicole has the self-efficacy belief and her mother has the confidence in her daughter’s ability, to make autonomous decisions regarding asthma management.
The following extracts are from children across the age range and their parents. The child is able to decide their symptoms are related to their asthma and have made an autonomous decision to administer their medication. However, in all scenarios (except Nathaniel’s) the child’s agency is ‘thinned’ by the school system policy of putting the inhaler in a ‘safe place’, the child has to ask permission from the teacher to obtain their inhalers. As illustrated within the following extracts:
‘If you wanted your inhaler you would just ask miss’ Dean 7
‘If I start coughing at school I would tell the teacher and she would ask me which inhaler do I need. I have my inhalers on the shelf at school’ Julie 8
‘My inhaler is kept in a box on the windowsill at school. The teacher sends you in for it. I do my inhaler myself’ Paul 8
‘My inhaler is kept in the first aid bag at school. I was in the playground and I needed my inhaler so me and my friend went up to class and asked if I could take my inhaler’ Nicole 11
‘If I was at school I would tell my teacher I needed my inhaler and she would go and get it for me and she would do it’ Amanda 9
Parents do not challenge the ‘thinning’ of the agency within the school setting and are aware their child does not have access to their inhaler demonstrated within the following extracts:
‘She has been coughing in assembly and asked her teacher for her inhaler’ Kirsty, mother of Amanda 9
‘At school they have their inhalers in a box and so he would have to go and ask the teacher first’ Susan, mother of Dean 7
‘I always say it is her decision but she needs to ask her teachers for her inhaler’ Louise, mother of Julie 8
Nathaniel is the only child to have accessibility to his inhalers at home and in school facilitating his autonomous treatment decisions. Nathaniel and his mother Jenny, both agree on Nathaniel carrying his own inhaler as they are both confident in his inhaler use, illustrated within the following extracts:
‘I just make sure he keeps his inhalers with him at all times. He can cope with it at all times’ Jenny, mother of Nathaniel 11
‘I normally have an inhaler with me so I would just use it. I don’t mind taking the inhaler in front of my friends. When I have taken my inhaler after about 5 minutes my lungs don’t hurt anymore so I know I have taken it properly’ Nathaniel 11
These extracts demonstrate the changing autonomy for decision-making when the inhaler is not accessible. A ‘thinning’ of Dean’s agency is clearly demonstrated within the school setting. These findings reinforce school systems diminish instead of assisting self-
management and the school nurse needs to take action on this issue and educate the school staff.
6.8 Summary
The deeper exploration of decision-making under the influence of different factors indicates that decisions are often shifting between a child and their parent as they develop confidence
and independence in decision-making. This study highlights that the transition of decision control fluctuates, it is not one directional or static, but influenced by a number of
contextual and family characteristics and can move iteratively between a child and the parent.
The findings were drawn from the interview data of seventeen participants although a concentrated cohort the plethora of information gathered from the in-depth interviews was extremely honest and enlightening. Vital information regarding decision-making between children and parents can be gleaned from these varied family experiences to inform discussions in clinics with family dyads looking to foster and develop child agency towards asthma management decision-making. The study demonstrated child and parent decision preferences for the control of asthma management decisions have been highlighted, demonstrating how decision control was a shifting and shared process dependent on contextual factors.
The contextual factors resonate with the theory of interlinked layers of the ecological/family systems theory (Bronfenbrenner, 1979). The child is at the centre of the decision-making process. The surrounding layer ‘microsystem’, highlights how the child’s everyday
experiences influences their level of decision-making participation. The next layer, ‘mesosystem’, represents the parent influencing the child participation. The outer layer, ‘exosystem’ represents the environment and the many influences affecting the child
participating within the decision. Figure 13 illustrates how context is interlinked and affects the child, at the centre of the decision.
The findings are now discussed and appraised in Chapter 7 alongside the current evidence of child decision-making and cognitive development theories to fully explore the impact and new knowledge, uncovered from this study, that will impact directly on nurses and health care professionals advising and guiding families surrounding long-term asthma management.
Figure 13: Contextual influence to child decision-making
Child Parent Shifting and shared decision-making
Key:
Contextual influences Factor
Child Cognitive development, self-efficacy, locus of control, experience.
Decision Type of decision: ‘who’, ‘what’, ‘when’, ‘why’.
Parent Parenting styles, confidence in child’s ability, presence/absence.
Environment Home, school, locus of control.
Environment
Parent
Decision
Chapter 7: