Josie was diagnosed with diabetes mellitus at the age of 2 years. She was living with her mother, father and sister, Michelle, who was then 4 years old. For the family, Josie’s diagnosis changed their lives. The diagnosis of a chronic illness signals the end of the known world for the family and its individual members. Uncertainty and a period in which the family attempts to adapt follow. Most families and children will strive to normalise their new situations (Fisher 2001, Knafl & Deatrick 2002, Darvill, 2003, Darvill 2003). Some families are successful in their adaptation, while others are not and will remain vulnerable (Dellve et al. 2006). The ability to cope varies according to individual factors, the dynamics within the family and the specific health problem (Dellve et al. 2006).

The range of responses can be conceptualised as a continuum reflecting the difficulties the families have in their adaptation (Hentinen & Kyngas 1998, Knafl & Deatrick 2006), whether individuals’ experiences are similar or different (Knafl & Deatrick 2006) and the degree of stability within the parenting relationship (Darvill 2003). Families often struggle with the emotional impact, the additional stress that is encountered and the loss of important aspects of their lives. Thus, stress arises from multiple sources—intrinsic, family, the child and from interactions with health services (Krulik et al. 1999, Chesla & Rungreangkulkiji 2001, Melnyk et al. 2001, Australian Institute of Health and Welfare 2005b, Dellve et al. 2006, Barlow & Ellard 2006).

Josie’s mother and father were shocked at the diagnosis of a chronic disease requiring complex management. They watched their child suffer while undergoing medical treatment. They had to perform painful procedures such as blood glucose monitoring and injections of insulin themselves. Further, they lost a certain freedom in their lives as a new regime was required to manage Josie’s diabetes.

The emotional impact is often ongoing with peaks of intensity at critical moments, such as if the child is not achieving a developmental milestone, transitional times including starting school and puberty or when the child is having an acute exacerbation related to their condition (Melnyk et al. 2001). Barlow and Ellard (2006) found that 5 years from diagnosis, the parents experience a range of issues. They may be fearful and uncertain or even display symptoms of posttraumatic stress. They are also likely to worry about their child’s future and health. In contrast, some reviews they evaluated noted positive outcomes such as good support systems, the development of new values and attitudes, and increased bonding within marital relationships and families.

Parents are not the only ones who suffer. The children, both those with a chronic disease and their siblings, may also suffer, although again the evidence is inconsistent or incomplete. In addition to the consequences of the disease itself, the affected child is at a slightly higher risk of a psychosocial problem. The child may have difficulty adjusting to their circumstances, miss school, lose touch with friends and therefore risk social isolation. Thus the child may feel different, anxious and depressed, and may develop emotional and/or behavioural problems. The child’s self-concept and self-esteem may be lower, although the evidence is again not consistent. The risk factors for developing these problems are also not clear. This makes specifically targeted interventions difficult (Barlow & Ellard 2006).

Siblings may have similar psychosocial problems. The severity of the affected sibling’s illness can be related to this, as can the sibling receiving less attention from their parent(s), or experiencing disruption to family plans or outings (Barlow & Ellard 2006). Once again the evidence is mixed.

It is clear that having a chronically ill child in the family has the potential to impact on the psychosocial wellbeing of the family as a whole. These multiple and complex issues increase the burden on health systems to be responsive and to promote the wellbeing of the child and family. It is also clear that there are inconsistencies in the evidence, and in order to improve services there is a need for further rigorous research (Barlow & Ellard 2006).

An important goal of parents and children is normality (Fisher 2001, Knafl & Deatrick 2002, Darvill 2003). Normalisation is a dynamic process that changes over time, with some families normalising and others not. Normalisation entails two conceptual processes:

Normalisation is seen in families who focus on the normal aspects of their child rather than focusing on what is different. This affects their management (Knafl & Deatrick 2006), enables them to eventually see their lives as normal, and to manage the illness successfully (Deatrick et al. 2006).

The characteristics of not having achieved normalisation (see Table 12.2) can also be seen as barriers to normalisation. These arise from the subjective views of the parents, conflicting opinions of their situation or the work involved in complying with the treatment regime. Families may exhibit one or more of these barriers (Knafl & Deatrick 2002).

Families may adopt what Knafl et al. (1996) described as a family management style (FMS), which is more than just a strategy such as normalising. The FMS is the configuration formed by the family, their definitions of their situation, their management behaviours and their sociocultural contexts (Knafl et al. 1996). (See Box 12.1.)

Until very recently the point of view or voice of children with chronic illness has been ignored. Historically, children’s perspectives have not been sought by qualitative researchers for two reasons. First, they are vulnerable to exploitation and, second, they have been thought of as incapable of participation. In Chapter 4, a discussion of ethical principles, guidelines and practice concerning research with children and young people is presented. Children are vulnerable, but this is not a reason to exclude them from active engagement. As helpful as developmental theories have been, the division of a child’s life into stages (Santrock 2004) has constantly forced comparisons between children and adults. It highlights what children are incapable of rather than what they can do. This could be called a deficit model of children (Woodgate 2001).