Development of an ecological momentary assessment of fatigue after ABI using sequential exploratory design

Background: It is estimated that between 21 -77% people with acquired brain injury (ABI) experience problematic and persistent fatigue. Many struggle to resume their previous levels of activity and participation. Yet the relationship between fatigue and participation is unclear. Current approaches to assessing the impact of fatigue on participation fail to capture the variability of fatigue experiences or to evaluate the efficacy of fatigue interventions. Aim: to develop and evaluate a smartphone ecological momentary assessment (smart EMA) of the impact of fatigue on participation in the context of daily situational factors. Methods: A user- centred design approach guided the development of the smart EMA app and was underpinned by the biopsychosocial approach to disability. The concepts underpinning the app were generated through a systematic review of participation after stroke and narrative reviews of participation after ABI, together with a qualitative descriptive study of fatigue experiences after ABI. Interviews were conducted with people with ABI and the transcripts were analysed using the Frameworks method. Initial prototypes of the smart EMA were developed collaboratively with app developers, and people with ABI. The EMA consisted of self -reports of activity, energy and a psychomotor vigilance test. The app was evaluated using an iterative user-centred approach with Occupational Therapists and people with ABI, through talk aloud interviews, field testing, qualitative interviews and the system usability scale. Results: The systematic review of 82 studies investigating participation outcomes after stroke revealed multiple associations between biopsychosocial factors and participation but fatigue was infrequently investigated. The narrative reviews revealed conflicting evidence of the interplay between fatigue and participation and the need for ecological momentary assessments (EMA) of fatigue was established. 16 people with ABI were recruited to the qualitative study. Four themes were derived through analysis of qualitative interviews: experiencing fatigue in the context of everyday activities, struggling to make sense of fatigue, coping with fatigue, adjusting social participation in the context of fatigue. A model was developed proposing that the impact of fatigue on participation is mediated by coping strategies. The app was positively rated by 7 study participants with ABI, with a mean S.U.S. score of 86. 233 EMA surveys were completed during field testing. Key usability problems were related to the method of alerting participants to complete a survey. Visual inspection of the EMA data suggested within-person variation in temporal patterns of energy, fatigue, and activity, as well as individual differences in fatigue-activity interactions. A short PVT was found to be feasible as an objective indicator of fatigue. Conclusions: these studies suggest coping and self-efficacy as intervention targets for mitigating the impact of fatigue on daily life. A smart EMA app to monitor fatigue and activity in ABI survivors is feasible, acceptable to users, and provides data about fatigue variability in the context of daily activities and environments. As such, the app has potential to ground the choice of selfmanagement strategies in empirical evidence

Experiences of fatigue in daily life of people with acquired brain injury: A qualitative study

Purpose. To develop an in-depth understanding of how survivors of acquired brain injury (ABI) experience fatigue and how fatigue affects everyday life. Materials and methods. We conducted semi-structured in-depth interviews with 16 adults with ABI fatigue, recruited from support groups in south east UK. Interviews were analysed using the frameworks method. Results. We developed four themes: experiencing fatigue in the context of everyday activities, struggling to make sense of fatigue, coping with fatigue, adjusting social participation in the context of fatigue. Fatigue was comprised of mental, physical, generalised and motivational fatigue. Balancing fatigue against participation in daily activities was influenced by coping strategies and social support. Opportunities to socialize or participate in meaningful activities provided incentives for participants to push through their fatigue. Conclusions. This study highlights complex interactions that potentially mitigate the impact of fatigue on everyday life. Educational and self-management approaches to fatigue need to account for different types of fatigue in the contexts of an individual’s daily activity. Assessment of fatigue should capture in- the- moment experiences of different types of fatigue and activity. Social support and participation in meaningful activities may help individuals to break the negative cycle of fatigue and inactivity

Factors associated with participation in life situations for adults with stroke: a systematic review

Objectives: To identify biopsychosocial factors associated with participation outcomes for adults with stroke and to investigate factors associated with participation at different time points post stroke. Data sources: Medline, CINAHL, AMED, PyschINFO and Web of Science were systematically searched using key words “stroke”, “participation” and “outcomes” and their synonyms on 15th May 2017. Study selection: Observational studies reporting on biopsychosocial factors and participation outcomes for community dwelling adults with stroke were selected. Studies were eligible for inclusion if participation outcomes were measured using indices that mapped to the participation domain of the ICF. Intervention studies were excluded. A second reviewer checked all studies against eligibility criteria at each stage. Data extraction: Data were extracted on any statistically determined association between biopsychosocial factors and participation outcomes. Data synthesis: The proportion of studies reporting significant associations with variables were classified according to the ICF. The exact binomial test was used to determine the probability that the proportion of studies reporting significant associations was due to chance alone. Qualitative descriptive summaries of each study allowed consideration of interactions between variables and changes in participation over time points. Conclusions: Whilst depressive symptoms, cognitive functioning and mobility were found to have the strongest associations with participation, we found that other frequently occurring factors (such as fatigue and environmental factors) were less extensively considered. The diversity of outcome measures encountered within the review highlight the need for a consensus on a core set of outcome measures to evaluate long term participation in life situations after stroke

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