Evaluating the process of change : Studies on patient journey, hearing disability acceptance and stages-of-change

Abstract: Person with hearing impairment (PHI) and their Communication partners (CPs) have a range of experiences and milestones before, during and after their audiological assessment and/or rehabilitation sessions. The term ‘patient journey’ refers to understanding the experiences and the processes the patient goes through during the course of the disease and the treatment regime. The aims of the current thesis were: (1) to further develop patient journey models of individuals with gradual-onset hearing impairment and CPs by taking their views into consideration; (2) to develop the patient journey model for PHI of sudden-onset; (3) to develop a self-reported measure of hearing disability acceptance and to study its construct and concurrent validity; (4) to investigate the health behaviour change characteristics of people noticing hearing difficulties using the stages-of-change model. Papers I (n=32) and III (n=9) were aimed at further developing the journey model of PHI and their CPs proposed by the Ida Institute. Both studies employed qualitative methods (i.e., focus groups and interviews for data collection and thematic analysis for data analysis), and defined the models based on the perspectives of PHI and CPs both of which had seven main phases. These data were compared with the professionals’ perspectives of the journey as reported in the Ida Institute model which had six main phases. Our studies highlight new phases (i.e., self-evaluation in PHI journey and adaptation in CP journey) and also various commonalities and differences in the perspectives expressed by professionals and patients.Paper II included a pilot study to explore the patient journey of sudden-onset acquired hearing impairment from both professionals (n=16) and patients (n=4) perspectives. Both identified all the six main phases, which include: awareness; movement; diagnostics; rehabilitation; self-evaluation; and resolution. The pre-awareness phase may hinder the realisation of hearing loss in persons with gradual onset hearing loss, whereas it is far more straightforward in persons with sudden-onset due to its nature of onset.Papers IV and V employed a cross-sectional design (n=90). Paper IV was aimed at developing a Hearing Disability Acceptance Questionnaire (HDAQ), and to study its construct and concurrent validity. Results suggested that the HDAQ has a two factor structure which explains 75.7% of the variance and had good internal consistency (Cronbach’s alpha of 0.86). Also, the scale had good concurrent validity in relation to self-reported hearing disability, self-reported anxiety and depression and readiness to change measures. Paper V was aimed at understanding the stages-of-change in adults with hearing disability using the University of Rhode Island Change Assessment Scale.  As predicted a high percentage of participants (over 90%) were in the contemplation and preparation stages, supporting the stages-of-change model.Overall, the papers presented in this thesis may contribute to a better understanding of process of change through hearing impairment in PHI and their CPs.