Chouliara, Niki
(2013)
The development of a questionnaire assessing the outcome of memory rehabilitation for people with acquired brain injury.
PhD thesis, University of Nottingham.
Abstract
Part A: Memory rehabilitation is a promising approach to address memory difficulties although its effectiveness with neurologically impaired individuals is yet to be established (Chapter 1). This thesis was conducted within the context of the pilot and main phase of a randomised controlled trial (ReMind) evaluating the effectiveness of memory rehabilitation for people experiencing memory problems following traumatic brain injury (TBI), stroke and multiple sclerosis (MS). The trial compared the effects of restitutive and compensatory memory rehabilitation strategies with a self-help control intervention on memory functioning, mood, activities of daily living and mental adjustment. The quantitative data obtained in this trial did not provide strong evidence to support the effectiveness of the intervention. The use of inappropriate outcome measures may account for the contradictory or inconclusive findings of the ReMind and other memory rehabilitation studies. Chapter 2 provides a review of measures that were used in the ReMind trial and/or were commonly used to evaluate outcome in memory rehabilitation studies. A lack of measures that considers the aims of memory rehabilitation and the needs of neurologically impaired individuals was observed. The post-intervention interviews of participants (N=19) in the pilot phase of the ReMind were analysed thematically (Chapter 3). Participants reported benefits in areas that were not covered by existing quantitative outcome measures such as insight into the nature and severity of their memory problems, confidence in their ability to manage these difficulties and qualitative improvements in the use of memory aids.
The aim of the following studies was to develop and evaluate a questionnaire responsive to the effects of memory rehabilitation following acquired brain injury. The process included two stages:
Part B: Identification of the content of AMEDO questionnaire: At this stage, studies were conducted within the main phase of the ReMind trial. The content areas of the questionnaire were identified based on the input and feedback of participants in each of the three memory rehabilitation programmes (Restitution, Compensation and Self-help groups). A mixed methods design was followed and information was drawn from two sources:
1)Real time observations of 43 sessions were performed (Chapter 4). The study introduced a new recording strategy by using a time sampling method to qualitatively record the content of conversations. Group activity was also evaluated. Following a quantitative content analysis method, observations were grouped into categories and their frequency was assessed in order to systematically describe and compare the content of the three programmes.
2)Semi-structured post-intervention interviews were conducted with 20 participants to explore their experience in the groups (Chapter 5). Recurrent patterns of data were identified inductively following a thematic analysis approach. Interviews from each programme were analysed separately and the emerging themes were compared and contrasted to highlight similarities and differences between the programmes. The majority of participants perceived the main benefits of memory rehabilitation to be: a) responding to their need for information on the cognitive effects of brain injury, b) enhancing their sense of self-efficacy and control over their memory difficulties, c) motivating them to adopt a more proactive attitude towards the management of these problems. The advantages of the group based approach to rehabilitation were also highlighted by most respondents.
Questionnaire items were generated to cover the key content areas that were identified in both studies: memory knowledge, awareness, emotional adjustment, active coping, control beliefs, attention, significant others (comprised Part A of the questionnaire), the use of external memory aids (comprised Part B1) and the use of internal memory aids (Part B2).
Part C: Evaluation of the psychometric properties of Adaptation to Memory Difficulties Outcome questionnaire (AMEDO): The final study of this thesis (Chapter 6) evaluated the psychometric properties of the new questionnaire. The first version of AMEDO included 45 items rated on a 4-point Likert scale (strongly disagree-strongly agree). Face validity was assessed by researchers and clinicians experienced in the area of neurological rehabilitation. The psychometric properties of AMEDO were evaluated by posting the questionnaire to a sample of people with MS and TBI identified through hospital records. It was returned by 110 people with MS and 34 people with TBI and 87 of these participants returned the second questionnaire that was sent to assess stability.
After applying the criteria of face validity, response distribution, and construct validity 15 items were retained in Part A of the questionnaire, and four items in Parts B1 and B2 respectively. The distribution of responses was acceptable for all items except for the ones assessing the use of external memory aids which displayed negative skew (ceiling effects). Principal component analysis indicated that the questionnaire captured most of the content areas it was designed to cover. Part B1 and B2 formed two distinct subscales assessing effectiveness in the use of external and internal memory aids respectively. Part A comprised three components: “Memory knowledge”, “Control” and “Emotional adjustment”. Evaluation of item-convergent validity confirmed the three factor solution. Internal consistency estimates for all the subscales were found to be satisfactory (α=.74-.84). Correlations between the subscales indicated that the represented constructs were related in meaningful ways. Test–retest reliability coefficients for the subscales ranged between r=.60 to r=.82. The biggest discrepancies were found in the “Memory knowledge” and external memory aids (EMA) subscales whereas the “Control” and “Emotional adjustment” showed acceptable levels of stability. Differences between test-retest scores in the former subscales dropped to satisfactory levels when analyses were repeated excluding respondents who completed the 2nd questionnaire more than a month after completing the 1st questionnaire. This finding indicated that the observed differences between scores at Time 1 and Time 2 may be reflective of actual changes taking place during that interval. Finally, it was shown that scores were not significantly affected by age, diagnosis and time since injury and, therefore, the questionnaire may be relevant to a wider neurological population.
In conclusion, AMEDO is a brief and simple measure tailored to the characteristics and needs of neurologically impaired individuals. The questionnaire shows promise as an outcome measure specific to the effects of memory rehabilitation, to complement memory batteries and established generic measures. Further evaluation of the scale should confirm the stability of the questionnaire and assess its responsiveness to changes following memory rehabilitation.
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