Recovery and adaptation after traumatic brain injury in New Zealand: Longitudinal qualitative findings over the first two years.

Knowledge about the impacts of traumatic brain injury (TBI) and aspects that influence recovery and adaptation are key to understanding how best to provide appropriate services. Whilst injury experiences have been documented, factors that help or hinder recovery and adaptation over time and across injury severities remain unclear. We present overarching findings addressing these matters in a large longitudinal qualitative study of recovery and adaptation following TBI. People experiencing TBI (n = 52) and their significant others (n = 37) were interviewed at 6-, 12- and 24-months post-injury. Data were thematically analysed cross-sectionally and longitudinally. Two overarching themes were captured in the analysis: making room for recovery and cultivating important resources. Themes comprise circumstances and processes that changed and developed over time in different ways for different participants. Key complexities within the overarching themes included the notion of "acceptance" and the role it played in allowing for recovery and adaptation; and the concept of "self" as a resource aiding recovery, but one that is perpetually at risk due to the intersection between the functional and social effects of the injury. Developing concepts of TBI recovery and living with TBI were central processes across diverse participants, but necessarily individualised in how they could be enacted.

Living Life After Traumatic Brain Injury: Phase 1 of a Longitudinal Qualitative Study.

OBJECTIVE: To explore what helps and hinders recovery and adaptation after disabling traumatic brain injury (TBI) and make recommendations for improving service responsiveness. DESIGN: A longitudinal qualitative descriptive study across all TBI severities. SETTING: Community. PARTICIPANTS: Forty people with TBI, and 22 significant others, 6 to 9 months following a TBI. MAIN MEASURES: Semistructured interviews, analyzed using qualitative description, focused on (a) key areas of importance or concern and (b) strategies or actions that people found helpful or that hindered recovery. RESULTS: Traumatic brain injury produced a complex set of challenges in keeping up with life, and understanding what having a TBI means for, and to, me. This period encompassed a tangled fit and misfit in life as brain injury did not occur in isolation. People had to actively change some aspects of life and yet allow other changes to happen. Valued supports from others included being looked out for and having someone to help drive the process. CONCLUSION: Improved services delivery and better outcomes may result if we respond to the person within his or her context; listen, believe, and acknowledge the person's story through our actions; and avoid assumptions about aspects of life that mean most to people and who/what may help best.

Identifying an outcome measure to assess the impact of Mobility Dogs.

PURPOSE: Mobility Dogs® trains dogs to work with people with physical disabilities to increase independence, confidence, self-esteem and participation. Mobility Dogs® seeks to critically evaluate and improve its services as it grows. This study aimed to identify and implement a standardised outcome measure into practice at Mobility Dogs®. METHOD: Based on the Consolidated Framework for Implementation Research and guided by a steering group of key stakeholders, a three-phase approach was developed to identify and assess an outcome measure. The steering group highlighted the organisation's specific needs, selected participation as the assessment domain and identified core utility requirements of the measure. A comprehensive review of evidence was undertaken to identify and rank potential measures according to the specified needs. RESULTS: Of the seven participation outcome measures that met inclusion criteria, the three highest ranked measures were critically evaluated by the steering group to determine suitability against the organisation's needs. The Impact on Participation and Autonomy (IPA) was selected for implementation into practice at Mobility Dogs®. CONCLUSION: Use of the IPA is an important first step for Mobility Dogs® to test the benefits of trained service dogs. This process could be replicated by other service dog organisations to identify outcome measures to assess their own services. Implications for Rehabilitation Service dogs (such as Mobility Dogs® in New Zealand) assist people living with physical impairments by performing tasks, however there is limited evidence on outcomes. The process for selecting an appropriate outcome measure for Mobility Dogs® involving partnership between Mobility Dogs® personnel and academics was an effective way to steer the project by determining important properties of the measure, before a search of the literature was undertaken. While the IPA was selected as the most appropriate outcome measure for use at Mobility Dogs®, it was the process that is valuable to replicate if other organisations wish to select an outcome measure for use in their own practice.

Optimising qualitative longitudinal analysis: Insights from a study of traumatic brain injury recovery and adaptation.

Knowledge about aspects that influence recovery and adaptation in the postacute phase of disabling health events is key to understanding how best to provide appropriate rehabilitation and health services. Qualitative longitudinal research makes it possible to look for patterns, key time points and critical moments that could be vital for interventions and supports. However, strategies that support robust data management and analysis for longitudinal qualitative research in health-care are not well documented in the literature. This article reviews three challenges encountered in a large longitudinal qualitative descriptive study about experiences of recovery and adaptation after traumatic brain injury in New Zealand, and the strategies and technologies used to address them. These were (i) tracking coding and analysis decisions during an extended analysis period; (ii) navigating interpretations over time and in response to new data; and (iii) exploiting data volume and complexity. Concept mapping during coding review, a considered combination of information technologies, employing both cross-sectional and narrative analysis, and an expectation that subanalyses would be required for key topics helped us manage the study in a way that facilitated useful and novel insights. These strategies could be applied in other qualitative longitudinal studies in healthcare inquiry to optimise data analysis and stimulate important insights.

Living well with disability: needs, values and competing factors.

BACKGROUND: Obesity is more prevalent for disabled people (estimated as being between 27-62%) compared to the general population (17-22%). Disabled people are more likely to report poorer general health and acquire a range of obesity-related secondary conditions. Although there are many physical activity and nutrition initiatives aimed at obesity prevention, little is known about whether these options are relevant and accessible for disabled people. The Living Well Study aimed to better understand the issues faced by disabled people when engaging in physical activity and healthy eating. METHODS: The study drew on a participatory action research design involving key stakeholders. There were two core cyclical phases (A and B), in which data collection was followed by a period of analysis, reflection and refinement. Focus groups and interviews were held with individuals who experience a range of disabilities, family members, service providers and representatives from disability advocacy groups. We sought to explore the importance and meaning of physical activity and healthy eating and factors that influenced engagement in these. Data in phase A were analysed using conventional content analysis drawing on constant comparative methods to identify themes of importance. In phase B, data analysis occurred alongside data collection, using a structured template to summarise participants' agreement or disagreement with the draft themes and recommendations, until the themes and recommendations were refined based on participants' corroboration. RESULTS: 146 participants aged between 10-69 years, from both rural and urban areas and of different cultural backgrounds participated. Seven interconnecting themes that related to engagement in living well behaviours emerged with a wide range of external factors (such as people, knowledge, time, cost, identity and the environment) impacting on living well options. The central theme - It depends: needs, values and competing factors - emphasised the complexity faced by a disabled person when balancing the external factors with their own personal values and needs in order to arrive at a decision to engage in healthy living behaviours. CONCLUSIONS: Although disabled people experience similar issues when participating in healthy living behaviours as those living without disability, additional factors need to be addressed in order to improve opportunities for 'living well' in these populations. This information has implications for health professionals to target the relevance and content of interventions.