1. Child-parent shifting and shared decision-making for asthma management
Vicky Garnett MSc, PGCE (PC), BSc (Hons), RGN
PhD Research Student
Supervisors: Professor Paula Ormandy, Dr Joanna Smith
September 2014

2. Aim Specific objectives
Explore and describe child-parent shared decision-making for the management of childhood asthma
Specific objectives
Examine how children and parents make joint decisions about asthma management;
Understand the process of parent to child transition to enable the child’s independent decision-making for their asthma management;
Identify the facilitators and barriers that influence child-parent shared decision-making in relation to asthma management;
Add to the theory of child-parent shared decision-making, through the development of a conceptual framework that could guide health care professionals when supporting child-parent decision-making, in relation to asthma management.

3. Background
Asthma is a disorder of chronic airway inflammation, characterised by wheeze, cough, difficulty breathing, chest tightness (SIGN/BTS, 2013)
Management involves prescribed inhaled medication
Prophylactic inhalers taken daily to prevent acute symptoms
Inhaled bronchodilators to treat acute breathing difficulties
Combined cost of asthma care (adults and children) is approximately £2.5 billion with £900 million towards public health delivery annually (SIGN/BTS, 2013; Asthma UK, 2010)
50% of resources directed towards acute care delivery and the 20% of individuals with severe asthma (NICE, 2013)

4. Shared decision-making
Involving the child within the decision-making process will facilitate a child developing good decision-making skills from a young age and could optimise long-term health outcomes
(Hannah et al., 2012; McPherson and Redsell, 2009)

5. Study design
Qualitative descriptive study using in-depth individual interviews
Semi-structured interviews with families (parents (n=9) and children (n=8) with asthma)
Art based activity at the beginning of the child interview to build rapport
Framework approach underpinned data analysis
A semi-structured interview method was adopted to elicit data because meaning is constructed through participant-researcher interactions, in order to generate new knowledge. Interviewing as a data collection enables meaningful engagement with participants allowing them to share their experiences, thoughts, attitudes and beliefs (ref). Consequently, interviewing is an active process and the resultant data are shaped by the interviewer and participant.

6. Study findings: who, what, when, why
Making sense of asthma
Independent decisions
Control and responsibility
Decision preferences
Four core concepts and themes by both children and parents were exposed when exploring whether children or their parents make asthma management decisions. Facilitators and barriers to child-parent asthma management decision-making are weaved throughout the themes, such as knowledge and understanding, self-confidence, cognitive development, school, locus of control, confidence in child’s ability, parenting styles and preferred decision-making.

7. Independent decisions
Child (age)
Age diagnosed
Independent decisions
Dean
(7)
3 years
When to administer & preventative inhalers, when symptoms require treatment, when to restrict physical activity
Paul
(8)
1.5 years
When to administer reliever inhaler, symptoms require treatment, to cease physical activity in presence of asthma symptoms
Julie
When to administer & preventative inhalers, when not to avoid specific triggers, when require treatment, when to administer reliever inhaler in presence of symptoms
Amanda (9)
4 years
When to minimises physical activity in presence of symptoms, when symptoms require treatment
Alicia
(10)
When to administer reliever inhaler, when asthma symptoms require treatment & avoiding triggers, when to resume activity
Sally
(11)
When to administer reliever inhaler, when asthma symptoms require treatment, when to administer reliever inhaler in presence of symptoms, when to take action to relieve symptoms
Nathaniel (11)
5 years
When to administer reliever & preventative inhalers, when asthma symptoms require treatment & administer reliever inhaler in presence of symptoms, when to avoid specific triggers,
Nicole
When to administers reliever & preventative inhaler & asthma symptoms require treatment, when to avoid specific triggers,
Just read out a couple of examples…talk about the age of child, time since diagnosis and independent decision examples

8. Sharing decisions: child extracts
‘I happy with the decisions that I am involved with... I decide to involve my mum or dad if it is really bad but normally I would just have my inhaler’
Nathaniel 11
‘I only let my mum know if I have taken like two puffs if it is really bad...’
Dean 7
Sometimes when I have a bad cough and I am a bit shaky I will ask my mum if I should take my inhaler. She will say if you are wheezing or your chest is tight then I should and she kind of helps me to make that decision’ Nicole 11
Children and parents express a range of decision preferences, demonstrating how a child begins to take responsibility for asthma management decisions but still retain parent’s support with some decisions. However, contextual factors and individual preferences appear to dominate the direction of the decision.

9. Contextual factors
Parenting style influences child agency and self-confidence
Cognitive development, decision-making and child agency
Shared decision-making used to build self-confidence and develop child agency
Parent absence increased autonomy and child agency
Shifting decisions and parenting style with severity of illness
Undermining confidence and child’s ability to make decisions reduces autonomy
Accessibility of inhaler and reduced autonomy
Seven contextual factors were explored to gather a deeper understanding of how decisions are made independently, with control shifting from child to parent or decisions shared between both.

10. Children’s agency
A child demonstrates agency by ‘actively taking control, by taking charge and having a direct effect on their situation’ (John, 2003; p195).
‘…contexts and relationships can act as thickeners or thinners of a child’s agency’ (Klocker, 2007: p85)

11. Parent style influence child agency
Permissive parenting style increases child agency
Authoritative parenting style increases child agency
Authoritarian parenting style reduces child agency
Typologies of parenting styles were identified within the descriptive stage of data analysis. Three of the four parenting styles emerged from the findings and the effect on the level of agency the child demonstrated within the decision-making process identified.

12. Conceptual framework of child-parent shared decision-making for asthma management
Maintaining health
Making sense of the child’s illness
Facilitators and barriers to the child’s self-management of asthma
Child
makes decisions
Shifting process
Parent
makes
decisions
Decision–making processes
Parent confident in child’s decisions: child supported to make decision
Children’s agency
Parenting styles
Child’s cognitive development
Family systems: boundaries, controls and hierarchies
The conceptual framework reflects that as children gain knowledge and experience they begin to take more responsibility for their condition, with parents recognising their child’s developing role in managing the condition. The shifting responsibility for asthma management decisions is not a linear process; whether the child or the parent dominates, decisions shift and changes across contexts and individual child and parent preferences. In many instances the decision-making is a shared process.

13. Contextual influence to child decision-making
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
The contextual factors resonate with the theory of interlinked layers of the ecological/family systems theory (Bronfenbrenner, 1979). This table demonstrates how context is interlinked and affects the child, at the centre of the decision.

14. Study strengths Listened to the ‘voice’ of the child
Parent perspective did not dominate the findings
Interviews/child participatory drawing activity to build a rapport with child
Experiential knowledge as a parent and school nurse of liaising with children
Naturalistic environment reducing the potential child-researcher power balance

15. Key messages
Children from aged seven years can make complex decisions about the management of their asthma
Although children may have the capacity to make asthma management decisions, many children want to share decisions with their parent
Asthma management decisions are a ‘shifting and shared process’, dependent on family dynamics and in differing contexts
Health care professionals need to incorporate child and parent decision preferences within the asthma management

16. Thank you for listening
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