Participation for Aotearoa New Zealand children after traumatic brain injury: an integrated approach
Jones, Margaret Anne
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Children’s participation is essential to their development and health. Although children who sustain a traumatic brain injury (TBI) are at risk of limitations to their participation, there is only a small body of research informing us about their participation. This research shows variability in study findings, reflecting limitations in study designs, differences in assessment instruments, and contextual factors, such as policy towards inclusion, and service availability. The present study was conducted to learn more about Aotearoa New Zealand children’s participation after TBI. It was guided by Dewey’s pragmatist philosophy, which emphasizes the continuity of people with their context. The study was conducted in three phases. Phase One used case study methodology to understand what was important about the children’s participation, and the facilitators and the barriers to their participation. The notion of Shared Occupation was found to be central, involving Fit, Connection, and Pattern across people, their occupations, the physical context, and time. The children’s participation was characterized by Misfit of participation demands, fragile or broken Connections, and by confined, irregular, and imbalanced Patterns. However people showed varying levels of Participation Skills in the areas of Driving, Leading, Including others, and Performing Shared Occupations, and used these to promote the children’s participation. In Phase Two, a narrative review of community-focused intervention approaches to facilitating children’s participation was undertaken. Its purpose was to name, describe, and compare current approaches, to evaluate the strategies used in those approaches against important aspects of participation identified in the case studies, and to evaluate the evidence for the effectiveness of the approaches. Systematic methods were applied to retrieve, screen, and critically appraise articles. Systematic comparison identified fifteen strategies and five overall intervention approaches. Three of the approaches had some evidence for their implementation with children with TBI, and one approach had good evidence. A need for multiple strategies was indicated. The findings from the case studies and the review were used to develop a draft, occupation-focused resource, with strategies to mobilize and enskill people in the children’s social communities to facilitate their participation. Phase Three aimed to further develop the resource. A pragmatic action research methodology was employed. Seventeen participants from different stake-holder groups took part in a workshop. Analysis revealed themes that were collectively interpreted with a metaphor of Ta Kupenga, or Net-making. Information was also generated about additional content for the resource, its format, and its dissemination. The themes and ideas from the analysis were incorporated into the draft resource. The study has implications for provision of rehabilitation. The concept of Participation Skills was identified, as was the importance of those skills in facilitating the children’s participation. There is a need for rehabilitation to address participation in context at the point where people use those skills in Shared Occupation. Attention should be paid to the Fit between children’s preferences and abilities and the context of their participation, the Connections they experience through participation, and the Patterns of their participation. The study has generated a resource which meets these criteria. Further research to pilot the resource is recommended.