The association between illness representations, coping strategies social support and adherence of parents with type 1 diabetic children

Background: Juvenile diabetes is a chronic progressive disease (Borches, Uibo & Greshwin, 2010) which is one of the most common diseases among children (Pettitt et al., 2014). Treating a juvenile patient with diabetes is a great challenge on a medical, behavioral and emotional level (Quinn, Fleischman, Rosner, Nigrin & Wolfsdorf, 2006) .This challenge has a strong effect on the parents who being their main guardians (Vesco et al., 2010) feel psychological pressure and negative feelings like depression, caused by the daily need to tend to their sick child (Hansen, Weissbrod, Schwartz & Taylor, 2012). These parents are exposed to more risk factors like, exhaustion, social isolation and depression in comparison to the normal healthy population. 

It is a given fact that the child's health is in his parents' hands and given the complexity of the treatment, studies have tried to understand what helps parents respond positively to therapy. These studies teach us the connection between socio demographical factors, illness perceptions, emotional reactions and available resources (coping strategies and social support) to treatment adherence. As important as this is no research has been carried out in order to examine these correlations among parents to children with juvenile diabetes.

The following research is based on the model of self regulation (Leventhal et al., 1980) which relates to emotional and cognitive processes in relationship to the threat of the disease. This model claims that in relationship to the threat of the disease (a juvenile disease for example) the idea of the disease's cognitive (like the ability to control the disease) and emotional   characteristics (or anger) which lead to coping with the disease (coping strategies) which each can have an impact on the medical outcome of the disease (adherence to treatment ).The variable of social support was uniquely added to the model in this research as a source available to the parents in this process. 

Research questions:

1. Is there a correlation between the characteristics of a cognitive emotional disease, social support and strategies of support and the adherence to treatment among parents of children with juvenile diabetes?
2. Is there a distinction between fathers and mothers to children with juvenile diabetes in terms of the characteristics of a cognitive emotional disease, social support and strategies of support and the adherence to treatment among parents of children with juvenile diabetes?
3. Are coping strategies an intermediary factor between the cognitive emotional characteristics of the disease and the adherence to treatment among parents of children with juvenile diabetes?
4. Does social support moderate the connection between the cognitive social characteristics of the disease and coping strategies?

Method: The research population included 104 parents to children with juvenile diabetes of ages 2-13 who were located through different social websites (facebook and whatsapp).

Procedure: The research questionnaire included an introduction which presented the research's goal and its significance with the commitment to full confidentiality as well as their right to end their part in the research without the risk of being harmed in any way.  A pre-test was conducted and 10 parents filled out the questionnaire. Since they had no special remarks there was no need for revision and the questionnaire was distributed in its original version. It took three months to gather up the questionnaires- between January and April 2.17. Over this period of time, 132 questionnaires were collected. Among them were 28 in which the participants did not answer to the criteria requested, for example, the age of the diabetic child involved. The research was based strictly on questionnaires completed and sent through internet networks.

Measures: The questionnaire included a number of components: a typical questionnaire for cognitive emotional disease (Moss-Morris et al., 2002) ; a questionnaire to measure coping strategies (Carver, Scheier & Weintraub, 1989) ; a questionnaire which measures social support (Zimet, Dahlem, Zimet & Farlry, 1988) and a questionnaire which measures adherence to treatment (Lewin et al., 2009) . In addition, information involving background variables was collected through a social demographic questionnaire and data involving additional characteristics of the disease through a questionnaire checking clinical characteristics.

Findings: The parents showed a relatively high adherence to treatment (M=4.1, SD=0.4, range 1-5). Over 70%of the parents associated the symptoms of gain and loss of weight, fatigue, stomach aches, dizziness and weakness to symptoms of juvenile diabetes. In addition, their concept of the disease was of severe consequences. Self-control, control by treatment and understanding, perceptions on medium-sized diseases among dimensions: vaccination reasons, causes of accident, cyclicality and emotional illness representations; low perceptions of illness among the dimensions: psychological reasons and risk factors. Parents coped with problem-focused coping strategies (M=2.9, SD=0.4) slightly more than emotion-focused coping strategies (M=1.8, SD=0.3). Parents also reported relatively high social support (M=5.3, SD=1.4; range 1-7).

In a two-variable analysis, statistically significant relationships were not found between coping strategies to adherence to treatment and therefore the mediation hypothesis was not available. Statistically significant associations were found between the manifestations of the disease and self-control and cyclical to adherence to treatment. Thus, the more a parent perceived his child's illness as being controlled by him, the more he was adherent to treatment. The more he perceived his child's illness as cyclical, the less he was adherent to treatment. Statistically significant associations were found between the perceptions of the disease, self-control and control by treatment, to problem-specific coping strategies, and the representations of the disease. Psychological causes, causes, risk and accident reasons for emotion-specific coping strategies. Thus, the more the parent perceives his child's illness as being controlled by him and the more coping with problem-oriented coping strategies. The more the parent perceives his child's illness as related to psychological causes, causes of risk, and causes of an accident, they coped more with emotion-focused coping strategies. A statistically significant association was found between representation of the disease and risk factors for social support. Thus, the more he perceived his child's illness as related to risk factors, the less he reported on social support. In a linear regression analysis, no predictive factors were found to respond to treatment.

A theoretical and practical contribution: Theoretically, for the first time, this study examined the self-regulation model in an extended manner (along with a social support variable) among parents of children with juvenile diabetes (type 1), while comparing the fathers and mothers, thus enriching the research knowledge regarding the contribution of the father and its importance for maintaining the routine care for the sick child. In practice, the study contributes to the structuring of intervention programs for parents of children with type 1 diabetes, and shows that disease concepts related to self-control and cyclical should be focused to promote adherence to treatment. In addition, the study emphasizes the importance of coping strategies in the process and the differences between fathers and mothers that should be considered during therapeutic intervention. In addition, contrary to the accepted belief, fathers are supported by social support and therefore awareness must be raised and promoted among healthcare professionals.