The Experience of Hearing Loss

Journey Through Aural Rehabilitation

Vinaya Manchaiah, Berth Danermark

• Publisher: Routledge
• Year: 2016
• Print ISBN: 9781138642201
• eBook ISBN: 9781317245995
• Edition: 1
• Topic: Medicine
• Subtopic: Health Care Delivery

Hearing loss is a common chronic condition which is often poorly recognized but can have multiple negative impacts, not just on the lives of those directly affected, but also those living with them. People with impaired hearing may begin a long and uncertain journey involving a number of key stages, from emerging awareness and help-seeking, to diagnosis, adjustment, and self-evaluation.

Based on a model of person-centered audiological rehabilitation, this book explains why it is important to understand both patients' own experiences, and those of their communication partners, over time. It focuses particularly on the human dynamics of hearing loss, exploring the broader consequences of hearing loss for the individual, family members, and wider society. In particular the book:

• gives insight into the patients' and their communication partners' experiences and perspectives through clear and telling first-hand narrative accounts;
• examines how people understand their own hearing loss, reflect on their experiences with hearing aids – both positive and negative – and evaluate treatment options;
• considers the changes needed to conversations in order to include all communication partners, whether with impaired hearing or not; and
• discusses consequences of hearing loss using the International Classification of Functioning, Disability and Health (ICF).

With its explicit aim to increase awareness of the need to include the patient and close relatives in the process of rehabilitation, this new text makes an important contribution to further improve evidence-based practice in the field of audiological rehabilitation. An ideal text for audiology, ENT, and nursing students of all levels.

1

INTRODUCTION

Experiences of people with hearing loss

Vinaya Manchaiah and Berth Danermark

The need for this book

Disability is a complex phenomenon, which needs to be studied and managed with a holistic perspective. Moreover, disability experienced by an individual due to a specific condition (e.g., hearing loss) may be diverse in its nature and impact. Such chronic conditions cannot be understood fully by measuring its intensity during clinical encounters and documenting the objective limitations that the condition imposes (DePoy and Gilson, 2011). Therefore, it is important to clarify why acquired hearing disability affects people in the manner that it does. However, this may require a multi-dimensional approach and a study of lived experiences could be important.

Aural rehabilitation is the core component of dealing with hearing loss. There are wide ranges of books (from introductory to advanced) available with the focus on aural rehabilitation. Generally, texts on aural rehabilitation have focused on specific aspects of rehabilitation (e.g., hearing aids, cochlear implants, counseling), although some textbooks have a more extended scope. In addition, almost all, including those with wider scope, are written with a focus on the clinician and what they need to learn in order to offer appropriate aural rehabilitation for persons with hearing loss (PHLs). There is growing literature on the patient’s view, which considers the processes that PHLs experience before, during, and after rehabilitation. These can include physical, mental, and social changes they face as they progress with different phases of their journey through hearing loss. Some autobiographical works have provided some accounts of this dimension. However, the authors of this book are unaware of any comprehensive book that captures this internal and external process that the patients and their communication partners (CPs or significant others) experience during the course of their condition. Hence, this book will focus on lived experiences of PHLs.

This book provides understanding of the main phases PHL may experience. It highlights the factors that may facilitate or hinder their progress through the course of the condition in terms of help-seeking, adopting rehabilitation interventions, adherence to rehabilitation, and outcomes of rehabilitation. Considering the patient viewpoint of the journey may provide some insights to the way they accomplish problem solving (or not) to cope with or manage their condition.

This book is written without assuming previous knowledge about disability and hearing loss. Hence, it can serve as an introductory book for various healthcare professionals. In addition, as it presents some new perspectives it can be a useful resource for hearing healthcare professionals. All the authors have a broad range of experiences in terms of working with a PHL, and have done in-depth study about the aspects discussed in their chapters with inspiration drawn from real cases. By employing experiences from people with technical, medical, and social science backgrounds, we believe this book presents a comprehensive view of hearing loss and disability with a focus on the patient perspective.

Finally, it is important to highlight that the scope of this book is limited to adults with gradually acquired hearing loss. We would argue that information in this book is complementary to popular rehabilitative audiology books, including Alpiner and McCarthy (2000) and Montano and Spitzer (2013). The book entitled Living with hearing difficulties: the process of enablement by Stephens and Kramer (2009) is the only other book that has taken the perspective of patients/clients, as far as we are aware, although it focuses much on aural rehabilitation models. Hence, the current book that provides an understanding of the processes from the patient’s perspective can be helpful for clinicians and students.

Layout and content of the book

This book has 14 chapters, which are written by experts from different parts of the world with varied professional backgrounds (audiology, psychology, sociology, anthropology, and epidemiology). The central theme of the book is to present and detail the patient journey model of the PHL. Earlier chapters focus on introducing the concept of patient journey, most of the mid-chapters expand on each phase of the journey with clear examples, and later chapters focus on implications. Due to the nature of the patient journey model and the aim of the author to write each chapter so that it can be read independently of the other chapters, there is some overlap across chapters. However, this information is complementary.

Chapter 2 provides a discussion about functioning and the International Classification of Functioning, Disability and Health (ICF). Chapters 3 and 4 present the journey model of the PHL and their CPs. In Chapters 5 through 12, the seven main phases of the journey of PHLs are described. Chapter 13 provides an overall illustration of the journey based on a longitudinal study of PHLs followed for over 15 years. Finally, Chapter 14 provides insights to implications and practical applications of the patient journey model.

Main elements highlighted in this book

To capture various internal and external factors that the PHL experiences through different phases of their journey, the chapters in this book will focus on the following aspects:

•Functioning: Referring to operating in a particular way to fulfill a task or purpose. This has two elements: activity (i.e., capacity) and participation (i.e., performance). It is difficult to distinguish between activity and participation. Aspects such as commitment, energy, freedom, control, and self-realization can also contribute to functioning.

•Conversation (or communication): The informal exchange of ideas by spoken words.

•Emotions: A natural instinctive state of mind deriving from one’s circumstances, mood, or relationships with others.

•External conditions of life: Home, work, finances, and interpersonal relationships (family, friends, etc.).

•Inner psychological state: Commitment, energy, feelings, self-realization, self-esteem, freedom, security, and state of mind.

•Mood: Valuing intangible things (e.g., harmony, balance, joy).

•Relationships: The way in which two or more concepts, objects, or people are connected, or the state of being connected.

•Self-image: Self-esteem, self-acceptance, close relationships, and friendship.

•Dialogism: Meaning is created through interaction, in dialogue.

•Social recognition: To be recognized by others as a complete human being.

•Stigmatization: To set marks of infamy or disgrace upon a person.

Evidence based practice

Evidence based practice (EBP) is the conscientious use of current best evidence in making decisions about patient care. The goal of EBP is the integration of: (a) practitioners’ knowledge and experiences; (b) scientific or research evidence; and (c) patient, client, and caregiver perspectives to provide high-quality services reflecting the interests, values, needs, and choices of the individuals served. It is common for academic literature to focus on research evidence and expert opinion. In this book, we include all three elements, but patient perspectives are highlighted.

Theoretical framework

Our understanding of phenomenon (e.g., impairment and disability) is underpinned by concepts and the relationships of concepts. The following three conceptual or theoretical frameworks form the foundations of the chapters in this book: Stages of change model; person-centered audiological rehabilitation (PCAR); and biopsychosocial model. However, the life-adjustment model is also discussed in Chapter 13 to form an overall discussion about the patient journey.

A conceptual model (e.g., International Classification of Functioning, Disability and Health – ICF) is madeup of the important concepts that are used to help understand or stimulate a subject the model represents. It provides insight into what should be included in analysis of the phenomenon. A theoretical framework is a more elaborated conceptual framework and, together with definitions and reference to relevant scholarly literature and existing theory, provides a frame of reference to explain and predict a particular phenomenon.

Stages of change model

The stages of change (also known as transtheoretical) model is based on the assumption that behavior change is mainly focused on an individual’s readiness to make a change and is achieved via various stages. Prochaska and DiClemente (1982) originally developed this theory to explain how smokers were able to give up their smoking habits or addiction. Although different versions of this model have been proposed over the years, a four-stage model has been used most often to describe different stages of change. The four stages include: (1) precontemplation – not thinking seriously about changing a specific behavior and not interested in help (i.e., often in denial); (2) contemplation – aware of the consequences of the problem and spends time thinking about the problem; (3) action – taking active steps to change their behavior; and (4) maintenance – successfully avoiding any temptation to give up the change they have made. In some stages of change models, additional stages such as “preparation” (i.e., stage in between contemplation and action where people are making preparation to take action by seeking information) and “relapse” (i.e., failure to comply with the change made and return to old habit) have also been included. Overall, the stages of change model suggests that the individuals in later stages are most likely to help-seek, take up intervention, adhere to the intervention, and possibly to display successful outcomes.

This model forms the foundation of the patient journey model, hence detailed discussion can be found in Chapter 3 and other chapters refer to this model. The number of stages may vary from different articles related to the stages of change model. However, throughout this book we refer to three stages (i.e., before rehabilitation, during rehabilitation, and after rehabilitation) and seven phases (i.e., pre-awareness, awareness, movement, diagnostics, rehabilitation, self-evaluation, and resolution).

Person-centered audiological rehabilitation

Person-centered care (PCC) is used to refer to many different principles and activities, and there is no single agreed upon definition of the concept. This may be because PCC is still an emerging and evolving area. In addition, if care is to be person centered, then what it looks like will depend on the needs, circumstances, and preferences of the individual receiving care. For example, what is important to one person in thei...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• List of figures
• List of tables
• Notes on contributors
• Foreword
• Preface
• Acknowledgments
• List of abbreviations
• 1 Introduction: Experiences of people with hearing loss
• 2 Functioning in adults with hearing loss
• 3 Journey of a person with hearing loss
• 4 Communication partners’ journey through their partner’s hearing loss
• 5 Pre-awareness: Failing to notice or realize hearing loss
• 6 Awareness: Understanding and becoming aware of hearing loss
• 7 Movement: Making steps to seek information, help, and intervention
• 8 Evaluation and diagnosis: Understanding, communication, and shared decision making
• 9 Rehabilitation: Learning and adapting to new methods
• 10 Self-evaluation: Reflecting on experiences and whether rehabilitation has made a difference
• 11 Resolution – part 1: Recapturing the conversation – hearing loss and communication
• 12 Resolution – part 2: Continuing to adapt to and live with hearing loss
• 13 Examples of the journey through hearing loss
• 14 Practice implications of the patient journey model
• Appendices
• Index