CUESTIONARIO DE CALIDAD DE VIDA Y ESTIMACIÓN DE COSTES

Children are active participants within the construction of knowledge regarding issues that affect them (Skanfors, 2009; Greig and Taylor, 2005; Mayall, 2002) and are able to provide reliable responses if they understand what is being asked of them (Fraser et al., 2004). The new sociology of childhood has emerged over the past two decades. Following on from the First World War, where children became part of the workforce, the whole concept of childhood was reappraised and the 1970’s saw a surge of child development and family research, as children were seen as the ‘future ofthe nation’ (Christensen and James, 2008; Fraser et al., 2004; p30). Resulting in the emergence of child research dominated by child development psychologists (Lutz et al., 2009), in particular Piaget, whose work was

particularly influential within developmental psychology (Fraser et al., 2004). As described in Chapter 2, Piaget acknowledged the age-related stages of cognitive development in children but Vygotsky and Donaldson argued for the historical, cultural and social context influencing the child’s perspective. Children are best placed to provide their perspective of participation within the decision-making (Alderson et al., 2006a), for their asthma management.

However, a child as a research participant can be vulnerable in terms of ethics (Alderson et al., 2006b), consent (MacDonald and Greggans, 2008; Alderson etal., 2006b), power relations (MacDonald and Greggans, 2008) and methodology (Fraser et al., 2004). A child with asthma may already feel vulnerable as their asthma may single them out as being different (Greig and Taylor, 2005). A child may also feel obliged to participate which may be compounded in the context of having a long-term condition, for example asthma, due to their continuous contact with health care professionals. Undertaking research with children requires an understanding of the nature of childhood, guided by an understanding of child development theories. This enables an understanding of how children’s cognition develops, the development of their thought processes and how a child’s knowledge and behaviour is influenced by the social and cultural contexts (Lewis and Lindsay, 2002). Children also need to be able to demonstrate appropriate receptive and expressive language to participate within the research (Lewis and Lindsay, 2002:p46). My school nurse role incorporated working with children from aged four to sixteen years and a continuous reflection on the nature of childhood and child development theories. The underlying principles of the theories of childhood (Chapter 2), were continuously utilised within my school nurse role when liaising with the children and their families both within the school and the home environment. Skills gained for example: liaising with a child can take time and patience gaining trust and establishing a rapport is central to forming effective relationships with the child and family; using age related language and experience in interacting with children sensitively were applied to undertaking research with children particularly when seeking informed consent and undertaking interviews (Greig and Taylor, 2005).

Adopting a generic design was more likely to accommodate the differences between child and parent participants, which may have been hindered by adhering to a theoretical position that had favoured either the child or adult. Careful consideration of both, the

epistemological and methodological issues are required, for good research to be undertaken with children. It is important the researcher’s behaviour, values and roles are considered and expressed throughout the research study. Undertaking research with child participants presents a myriad of challenges including: identification of barriers and boundaries; negotiation; planning and design; access; creating the work environment; reflection

(MacDonald and Greggans, 2008; Greig and Taylor, 2005). Therefore, it is not sufficient to adapt adult-based interview methods, in the hope to elicit a true reflection of the child’s perspective. Traditionally, the Piagetian age-related stages of a child’s cognitive

development and the ‘concrete’ thinking of children under the age of seven years has influenced researchers reluctance to involve young children as research participants (Morrows and Richards, 1996).

4.4 Setting

The study was undertaken in East Lancashire where children have their asthma managed by the GP, asthma nurse or paediatrician, dependent on asthma severity. East Lancashire has a population of 370,000 (Office for National Statistics, ONS, 2008) and approximately 30% of the region has been identified as a deprived area (Index of Multiple Deprivation, 2007). This is significant because there is a strong relationship between the index of multiple

deprivations and children and young people’s health indicators (North West Public Health Observatory, 2009). East Lancashire also has an ethnically diverse population. Black and ethnic minority groups are estimated to be 12%. The predominant race is Pakistani (South East Public Health Authority, 2010). Pakistani groups are the highest ethnic group reporting their health ‘is not good’ (Public Health England, 2013) therefore participants from this minority ethnic group were important. East Lancashire has been identified as having a high incidence of respiratory disease (ONS, 2008) and was selected for this study due to the higher risk of emergency admission for childhood asthma exacerbations (Asthma UK, 2012; 2007). The East Lancashire Hospital NHS Trust incorporates the Local Authority Districts of Blackburn with Darwen; Hyndburn Ribble Valley; Burnley, Pendle and Rossendale. The area is served by Royal Blackburn Hospital; Burnley General Hospital; Pendle Community Hospital (East Lancashire Hospital NHS Trust, 2013). Burnley General Hospital specialises in elective treatment and urgent care for adults and children. A comprehensive paediatric service is provided for all children under the age of 16 years. A team of staff with expert knowledge and skills provide inpatient, outpatient and day case children’s services for a range of conditions, including asthma.