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Title: Exploring the healthcare experiences and quality of life of people with mild cognitive impairment and their caregivers
Author: Dean, K. J.
Awarding Body: University College London (University of London)
Current Institution: University College London (University of London)
Date of Award: 2013
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Mild cognitive impairment (MCI) is a common condition which lies between normal cognition and dementia. Relatively little is known about the experiences of people with MCI (PWMCI) and their caregivers (‘advocates’), particularly regarding healthcare services. No measures developed specifically to evaluate health related quality of life in PWMCI or their advocates exist. Therefore the aim of this work was to gather information about these groups’ experiences of living with MCI, with particular reference to their contact with healthcare services, to use this information to develop a patient reported outcome measure (PROM) for PWMCI and equivalent measure for advocates and to suggest improvements to healthcare services in light of the findings. Initial, in-depth information was gathered during semi-structured interviews with 23 PWMCI and 20 linked advocates, the resulting data was analysed using grounded theory methods. Commonly recurring and salient themes from analysis of the interview data were used as a basis for initial drafts of the outcome measures and patient and advocate surveys regarding healthcare experiences. The outcome measures and healthcare surveys were combined into two questionnaires (one for PWMCI and one for advocates). These initial drafts were discussed with a focus group and refined in light of their feedback, the resulting questionnaires were administered (by post) to 280 PWMCI (recruited from research databases and memory clinics) and their linked advocates. The response rate was 54% for PWMCI and 36% for advocates. Data from the outcome measure section of the questionnaire was analysed using factor analysis producing a measure for PWMCI (the MCQ) and one for advocates (the MCQ-Carer); both had good psychometric properties. Descriptive analysis of the healthcare experiences survey data revealed that both the PWMCI and advocates reported a range of unmet needs for help, support and information related to MCI; appropriate suggested improvements to healthcare services are made.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available