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

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.

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)

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)

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.

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.

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

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.

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.

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)

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.

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.

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.

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

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

Thank you for listening Contact details: e-mail: v.e.garnett@edu.salford.ac.uk