Conceptualisation of patient- and family-centred care for young adults with hearing loss and their family members

Abstract

The period of life between 16 and 25 years of age is an important time of change and development, with many young people leaving home, moving into tertiary education, establishing careers, or beginning families of their own. In Australia, more than 8000 young adults are living with a hearing loss requiring hearing rehabilitation. These hearing losses have the potential to have significant and far-reaching consequences for the social, emotional, educational, and vocational lives of these young adults, and it is currently unclear what these effects might be, or whether hearing rehabilitation is reducing them. In addition, while it is known that the effects of chronic health conditions including hearing loss can be effectively reduced by the application of patient- and family-centred care (PFCC), it is not currently clear what constitutes PFCC in this population.This thesis aimed to explore the lived experiences of young adults with hearing loss and to identify the nature of high-quality PFCC among them and their family members. Beginning with two systematic reviews of previously-published research addressing PFCC among young adults with other chronic health conditions, the likely primary elements of PFCC were identified, as well as evidence suggesting that attempts to implement these elements are likely to result in improved outcomes for young adults with chronic health conditions.Following this preparatory work, a survey was conducted to explore the demographics of young adults with hearing loss in Australia, and compare these to those of other young adults in Australia. Significantly poorer life satisfaction outcomes were found for young adults with hearing loss, although a correlation between life satisfaction and the patient-centredness of hearing (re)habilitation was identified, supporting the importance of patient-centred intervention in this population.Following this quantitative work, a group of young adults with hearing loss were interviewed, and asked about their experiences of hearing (re)habilitation, with a view towards identifying the major components of high-quality hearing (re)habilitation. Similar to other work in this field, the importance of a strong therapeutic relationship was identified, supported by hearing services that provided a service that was desired and valued, who were experts in hearing loss and its (re)habilitation, and who allowed young people control over their care and related decisions.Finally, a group of mothers of young adult children were interviewed, who told their stories of hearing (re)habilitation for their children. These narratives, beginning at diagnosis and stretching through to the present day (in which they were largely uninvolved in the day-to-day of hearing (re)habilitation) reflected a shared quest among these mothers to produce independent, successful children who were able to self-advocate and self-manage. These results underscored the importance of being aware not only of the dynamics of rehabilitation within the clinic room but also how those dynamics may have grown and developed over time.This research has shown that hearing loss is associated with significant impacts on young people, and that these impacts are not fully remediated by hearing (re)habilitation as it is currently delivered. However, it also presents a model of care that may assist hearing services to provide desirable PFCC for their young adult patients and their families in the future. This work strongly supports the incorporation of young people and families into decision-making and service design, as well as continued research into the needs and desires of young people living with hearing loss.