Assessing the Level of Distress of Parents of Children Recently Diagnosed with Chronic or Life-Threatening Illnesses or Injuries or Developmental Disabilities, and Comparing the Effectiveness of Two Psychological Interventions

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Parents of children who suffer from traumatic brain injury, chronic illnesses and developmental disabilities face a myriad issues that may not be immediately apparent. Apart from the practical responsibilities associated with caring for the ill child, other areas such as making sure that the household continues running smoothly and maintaining finances compete with parents' attentions. In addition to these practical challenges, parents also face internal challenges, such as having to come to terms with the possibility of losing their child, or that their child is not going to live their lives like their peers. Hot on the heels of these realizations are the "whys" and "hows" of their children's conditions, which challenge parents' beliefs about themselves and that of the world that they live in. This especially comes to the fore when parents witness their children suffering and in pain, or compare their children with their normally developing peers. As a result of these various sources of stress, a variety of emotional disorders in parents have been found to result from the diagnosis of their children's disabilities or illnesses. Depression, anxiety, as well as post-traumatic stress symptoms (PTSS) have been found to occur most often, with higher rates commonly found in parents whose children have recently been diagnosed (Vrijmoet-Wiersma et al., 2008). Although the level of emotional distress has been found by researchers to drop as time passes, the impact of distress has been found to have long-reaching consequences, sometimes manifesting as negative family communication, increased family conflict, and negative marital relationships, which then results in a vicious cycle as it feeds back into the emotional distress faced by parents. The diagnosis of illness or disability in a child therefore brings about a great impact on parents and the rest of the family. Although the impact of the diagnoses were described in terms of being external or internal to parents, it must be noted that these challenges interact with each other to produce either positive outcomes of growth or resilience in parents, or negative outcomes of distress. Most of the distress experienced by parents has been found by researchers to be at its most intense at the time of diagnosis, and likely to be maintained in the long run if parents' distress are not addressed. As such, the period following diagnosis appears to be crucial in assisting parents to lower their levels of distress. Hence, a screening tool that correctly identifies distressed parents without taking up too much of their time, as well as an intervention that helps them to reduce their distress, particularly existential distress, is necessary. Study 1 is an evaluative study that aims to evaluate the accuracy of a screening approach that assesses the level of distress of parents of children recently diagnosed with traumatic brain injury, chronic and/or life-threatening illnesses such as cystic fibrosis and cancer, and developmental disabilities. It involves a comparative analysis between a set of six emotion thermometers with a more comprehensive battery of assessment tools that measure depression, anxiety, loss of meaning, and post-traumatic stress disorder (PTSD). The purpose of investigating the utility and accuracy of a screening tool is so that distressed parents can be identified and referred to the various support structures in the hospital. Study 2, on the other hand, aims to compare the treatment outcomes between psychotherapy that is meaning-focused, with cognitive-behavioural treatment (CBT), immediately after treatment and at follow-up three months later. It involves a comparison of the specific components of both forms of therapy which can bring about a reduction of distress in the participants. The order by which the participants will receive both forms of therapy is alternated; that is, participants will be randomly allocated to a group that receives the meaning-focused therapy first, while the other group will receive CBT first, and the order will be switched at the conclusion of the prior treatment. At the conclusion of each treatment, participants will be asked to complete the assessment tools, to find out if there was a reduction in their distress. Hypotheses: 1) There will be a clear indicator of whether the screening tool can identify parents who are distressed. 2) The screening tool will be able to identify parents who may benefit from psychological support. These parents may have been overlooked if the screening tool had not been used. 3) The meaning-focused therapy will reduce parents' distress more than cognitive-behavioural therapy. 4) The greater reduction in distress that is brought about by the meaning-focused therapy than cognitive-behavioural therapy will still be demonstrated by these parents after three months. 5) Parents will report a greater increase in sense of meaning immediately after the meaning-focused component than immediately after the cognitive-behavioural component.

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