Novita Research Report - 2004 to 2007 - Novita Children's Services

30Evaluation of measurements, interventions, programs andclinical practice> Clinical PracticeNovita staff contributors highlighted in boldProject titleContributorsSummaryAn evaluation of psychological support for families of children with cerebral palsyDr Tim Connell, Violetta Hodges, Cassandra Harbutt-Nunerly, Liz Trubshaw.It is well recognised that mental health issues are more likely in a family that includes a childwith significant disabilities. Families of children with disabilities typically interact with a largenumber of support workers and health professionals. Some of these interactions help familiesconsiderably to deal with the psychological issues, others less so.Aims of the study were:• to identify practices, at a general level, of any service-provider personnel that parents felthelped them to deal with these psychological issues, and which practices were not helpful• to ask parents more specifically about the helpfulness of the practices of psychologyservice that they had experienced in the past and to indicate which of these psychologicalissues continued to be a concern and to what degree.MethodResultsImplicationsStatusThe study enabled us to identify those family/service interactions which were significant orimportant to families’ wellbeing. This information will be used to provide innovative directionsfor service development and more specifically, psychology services.The study was based on a single postal survey. 450 of the 1000 children with physicaldisabilities or acquired brain injury registered to receive therapy services from Novita in 2006were invited by letter to participate in the survey. Families who replied were sent the followuppostal survey that included open-ended questions, multiple choice questions and ratingscales. 70 families (15.5%) returned completed questionnaires.In relation to various types of health workers across different services, parents’ responsesindicated that key elements of helpful experiences for addressing psychological issuesincluded: positive worker qualities, tangible assistance, useful information and facilitationof connection with other families. Key elements of unhelpful experiences were: insufficientprovision of a specific service or information, negative effect of a prescribed process,perceived insensitivity of workers and interactions which unexpectedly re-activated theoriginal grief reaction to first news of their child having a disability.Parents reported most frequent and successful use of Novita’s psychology service forhelp with behavioural aspects of eating, sleeping, disability-related frustration, toileting andbedwetting. Psychological input was also most helpful for assisting children to make friends,children’s behaviour in public and school-related issues. Parental feelings/emotional stateand family/marital relationships were issues that remained of main concern.For clients – it is expected that the utilisation of the information from this study into servicedelivery will lead to improved worker-parent relationships and improved outcomes for childrenand families.For services – in addition to quality clinical services, the significance of quality of workerparentrelationships and facilitating connection between families is very important andneeds to be included in service development. The grief re-activation phenomenon suggestsmethods developed for helping people with post traumatic stress disorder may haveapplication with parents of children with disabilities. While still being beneficial, the areaswhere psychology support had room for development related to parental feelings/emotionalstate and family/marital relationships.Ongoing