Development and Preliminary Validation of Stigma Measures for Care Partners of Persons Who Are d/Deaf or Hard of Hearing.

OBJECTIVES: A great deal of literature documents the significant demands, both physical and psychosocial, that care partners experience when providing care to persons with a range of health conditions. There is, however, far less research available on care partners of adult persons who are d/Deaf or hard of hearing (d/DHH). In response to this gap, the authors developed measures of d/DHH stigma among care partners as part of the work of the Lancet Commission on Hearing Loss' Measures, Models, and Stigma Reduction Subgroup. The measures examined in this article are part of a larger set of parallel measures to enable comparison of stigma measurement across groups. DESIGN: The present study describes the preliminary validation of five stigma scales specifically tailored for use to assess the prevalence and effect of stigma on the care partners of adult people who are d/DHH in the United States. Care partners in this context are defined broadly and can include spouses, partners, adult children, siblings, and friends of persons who are d/DHH. The scales describe the care partner's own assessment of how the person who is d/DHH experiences and perceives stigma as well as the care partner's own internalized, experienced, and perceived stigma as a result of their association with a person who is d/DHH. This latter set of three scales describes secondary stigma, or the stigma a person experiences related to their association with a member of a stigmatized group. Measures were developed through a process that included a literature review, Delphi groups with people who became d/DHH after they developed spoken language, cognitive interviews, and a pretest. An online, self-administered preliminary validation survey was conducted with 151 care partners. RESULTS: Results support the internal reliability of each of the five stigma scales (ordinal α's all greater than 0.9) and that each scale is assessing a single factor. CONCLUSIONS: Additional testing is needed to confirm the validity of these measures. After further validation, they can be used to assess the prevalence and effect of stigma on care partners of persons who are d/DHH and to evaluate the success of interventions developed to address stigma and its effects both on the care partner and the person who is d/DHH and receiving the care.

Research Agenda and Applications for Preliminarily Validated Measures of d/Deaf and Hard of Hearing Stigma.

In this special supplement of Ear and Hearing, we have presented preliminarily validated measures for stigma related to being d/Deaf or hard of hearing (d/DHH) in the United States and Ghana. In this concluding article, we suggest avenues for the future refinement and use of these measures. First, the measures should be further validated. Second, they should be used to assess the current state of d/DHH stigma and the importance of different kinds of stigma in different populations, which should in turn drive the development of interventions to reduce d/DHH stigma. Third, these measures can assist in evaluating the effectiveness and cost-effectiveness of those interventions. The evidence from this work can then inform investment cases and cost-of-condition studies, which will support advocacy efforts and policy development for reducing stigma and improving the lives of people who are d/DHH.

Development of Measures for d/Deaf and Hard of Hearing Stigma: Introduction to the Special Supplement on Stigma Measurement Tools.

People who are d/Deaf or hard of hearing (d/DHH) often experience stigma and discrimination in their daily lives. Qualitative research describing their lived experiences has provided useful, in-depth insights into the pervasiveness of stigma. Quantitative measures could facilitate further investigation of the scope of this phenomenon. Thus, under the auspices of the Lancet Commission on Hearing Loss, we developed and preliminarily validated survey measures of different types of stigma related to d/Deafness and hearing loss in the United States (a high-income country) and Ghana (a lower-middle income country). In this introductory article, we first present working definitions of the different types of stigma; an overview of what is known about stigma in the context of hearing loss; and the motivation underlying the development of measures that capture different types of stigma from the perspectives of different key groups. We then describe the mixed-methods exploratory sequential approach used to develop the stigma measures for several key groups: people who are d/DHH, parents of children who are d/DHH, care partners of people who are d/DHH, healthcare providers, and the general population. The subsequent manuscripts in this special supplement of Ear and Hearing describe the psychometric validation of the various stigma scales developed using these methods.

Positive Impact of an Educational Brochure on Follow-Up for a Formal Hearing Evaluation.

Background and Objectives: Half of older persons experience serious hearing loss, yet it remains under-assessed in primary care clinics. Providers note time constraints as barriers and patients often minimize or deny their hearing loss. We tested the effectiveness of a simple hearing screen in primary care settings and whether including a brochure describing hearing loss, its consequences, and treatment would increase referrals for formal audiometric assessments. Research Design and Methods: We designed a longitudinal effectiveness study assessing three interventions: Screening alone; Screening plus a brochure handed to the person testing positive; and Screening plus the brochure with a brief review. The screening was accomplished by intake personnel. The results of a positive screen were given to the primary care practitioner. The approach was designed to enable its use across a range of primary care settings. Follow-ups occurred at 4 and 8 months. Results: A total of 111 older adults attending 7 primary care clinics screened positive for having possible hearing loss by intake personnel. A total of 46 received the educational brochure. Physicians discussed test results with two-thirds yet recommended further testing for only half of the participants. Physician recommendations were strongly motivating (OR = 9.12, 95% CI: 3.54-23.52) and those receiving the brochure were still more likely to seek further testing (OR = 2.61, 95% CI: 1.07-6.36) even when physician recommendations were controlled. Additionally, when combined, the 2 options were strongly motivating: all participants receiving both a referral and a brochure sought further testing. Discussion and Implications: A simple screen and educational brochure on hearing loss improved follow-up for a formal hearing evaluation which may improve hearing health care and minimize negative outcomes. The study also identified barriers to implementation, including how to motivate practitioners and assist intake personnel in integrating hearing screening into their routine intake procedures, supporting further research. Clinical Trials Registration Number: NCT0203713 9.

Role Identity Transition: A Conceptual Framework for Being the Spouse of a Person With Early Onset Dementia.

Informal caregivers of persons with early onset dementia (PWEOD) are usually the spouses of affected individuals. These caregivers face unique challenges related to the unexpected nature of disease onset at this early life stage along with the accompanying symptoms, which can be different from those in late onset dementia. The current study explores the meanings these caregivers make of their situations and actions in response to their experiences. Findings provide a basis for development of a conceptual framework illustrating the basic, psychosocial processes underlying their shared situation. Grounded theory methodology was used. Qualitative data were collected through semi-structured interviews with 15 participants. Data were analyzed using constant comparative techniques and situational analysis. A distinction was made across participants between identifying as spouse versus caregiver for their PWEOD. Each participant had made or was making an identity transition from viewing their role as becoming more caregiver-like toward an eventual, complete shift to that of caregiver in a stepwise fashion. Incremental shifts in identity reflected challenges to the notion held of what it means to be a spouse. Results support prior research highlighting the unique experiences of caregivers of PWEOD while providing a framework for understanding the unique situations of these care-givers. Findings also inform nursing interventions tailored for spouses of PWEOD. [Journal of Gerontological Nursing, 49(8), 27-34.].

New horizons in holistic, person-centred health promotion for hearing healthcare.

Over the course of a lifetime, the risk of experiencing multiple chronic conditions (multimorbidity) increases, necessitating complex healthcare regimens. Healthcare that manages these requirements in an integrated way has been shown to be more effective than services that address specific diseases individually. One such chronic condition that often accompanies ageing is hearing loss and related symptoms, such as tinnitus. Hearing loss is not only highly prevalent in older adults but is also a leading cause of disability. Accumulating evidence demonstrates an interplay between auditory function and other aspects of health. For example, poorer cardiometabolic health profiles have been shown to increase the risk of hearing loss, which has been attributed to microvascular disruptions and neural degeneration. Additionally, hearing loss itself is associated with significantly increased odds of falling and is a potentially modifiable risk factor for cognitive decline and dementia. Such evidence warrants consideration of new possibilities-a new horizon-for hearing care to develop a holistic, person-centred approach that promotes the overall health and wellbeing of the individual, as well as for audiology to be part of an interdisciplinary healthcare service. To achieve this holistic goal, audiologists and other hearing healthcare professionals should be aware of the range of conditions associated with hearing loss and be ready to make health promoting recommendations and referrals to the appropriate health practitioners. Likewise, healthcare professionals not trained in audiology should be mindful of their patients' hearing status, screening for hearing loss or referring them to a hearing specialist as required.

Leveraging the age friendly healthcare system initiative to achieve comprehensive, hearing healthcare across the spectrum of healthcare settings: an interprofessional perspective.

OBJECTIVE: Hearing loss is associated with multiple physical, cognitive, and psychosocial co-morbidities. Achievement of safe healthcare in the context of these complex co-morbidities necessitates accurate hearing and coordination across specialties. This paper discusses the potentials for and barriers to an interprofessional approach to integrating hearing screening and treatment across all healthcare settings. DESIGN: The paper reviews the relationship between hearing loss and other health care concerns to emphasise the need for an inclusive, coordinated, interprofessional approach; discusses interprofessional and patient/family centred coordinated care as essential to achieving quality care; and introduces the Age Friendly Health System initiative as a framework that could be leveraged to move towards comprehensive hearing healthcare. RESULTS: The literature highlights prior work identifying gaps in quality care and the need for new and innovative approaches to evolve interdisciplinary and interprofessional collaborations to achieve comprehensive healthcare. The literature also provides support for using the Age-Friendly initiative as a point of leverage. CONCLUSION: Bringing together thought leaders from the health care provider community, World Health Organisation, age-friendly cities movement, and field of architecture to coordinate the integration of hearing healthcare into Age Friendly Health Systems initiatives has potential to achieve comprehensive hearing healthcare across healthcare settings. (198).

Developing Leaders and Scholars in Health Care Improvement: The VA Quality Scholars Program Competencies.

Despite the need for leaders in health care improvement across health professions, there are no standards for the knowledge and skills that should be achieved through advanced interprofessional health care improvement training. Existing health care improvement training competencies focus on foundational knowledge expected of all trainees or for specific career pathways. Health care improvement leaders fill multiple roles within organizations and promote interprofessional improvement practice. The diverse skill set required of modern health care improvement leaders necessitates the development of training competencies specifically for fellowships in applied health care improvement. The authors describe the development of the revised national Veterans Affairs Quality Scholars (VAQS) Program competencies. The VAQS Program is an interprofessional, postdoctoral training program whose mission is to develop leaders and scholars to improve health care. An interprofessional committee of VAQS faculty reviewed and revised the competencies over 4 months beginning in fall 2018. The first draft was developed using 111 competencies submitted by 11 VAQS training sites and a review of published competencies. The final version included 22 competencies spanning 5 domains: interprofessional collaboration and teamwork, improvement and implementation science, organization and system leadership, methodological skills and analytic techniques for improvement and research, and teaching and coaching. Once attained, the VAQS competencies will guide the skill development that interprofessional health care improvement leaders need to participate in and lead health care improvement scholarship and implementation. These broad competencies are relevant to advanced training programs that develop health care improvement leaders and scholars and may be used by employers to understand the knowledge and skills expected of individuals who complete advanced fellowships in applied health care improvement.

Perceived Caregiver Stress, Coping, and Quality of Life of Older Ugandan Grandparent-Caregivers.

With the continued loss of lives due to HIV/AIDS in sub-Saharan Africa, grandparents bear the stress of caring for children affected by the epidemic, often with very limited resources. Yet, despite the acknowledgement that these older adults serve as the backbone and safety net of the African family in this HIV/AIDS era, very limited research has focused on investigating the specific health outcomes of caregivers in this region and how these changes in health status impact the overall quality of life of caregivers. This study highlights the stress perceived by Ugandan grandparent-caregivers, its impact on their overall quality of life, and the coping strategies they use to manage their stress. Thirty-two grandparent-caregivers (age 50 years and older) were recruited from urban and rural areas in Uganda and individually interviewed in 2016. Using constructivist grounded theory as the qualitative methodology, the narratives generated from the semi-structured, one-on-one interviews were audio-recorded, transcribed, and analyzed using both open and axial coding as well as reflexive and analytic memoing. Descriptions of caregiver stress (physical, emotional, financial, and social) were reported. Additionally, study findings uniquely explore the impact of the perceived stress on the grandparents' overall quality of life. Study findings provide a foundation upon which clinicians, researchers, and policy-makers can design and implement effective interventions to improve the health and quality of life of grandparent-caregivers in sub-Saharan Africa.

"I'm going to stay young": Belief in anti-aging efficacy of menopausal hormone therapy drives prolonged use despite medical risks.

BACKGROUND: Over a third of menopausal hormone therapy (HT) prescriptions in the US are written for women over age 60. Use of HT more than 5 years is associated with increased risk for cardiovascular disease; breast, ovarian, and endometrial cancers; thromboembolic stroke; gallbladder disease; dementia; and incontinence. OBJECTIVES: To explore older women's perceptions of the benefits and risks of long-term HT and examine factors influencing their decisions to use HT > 5 years despite medical risks. METHODS: A qualitative approach was selected to broadly explore thought processes and social phenomena underlying long-term users' decisions not to discontinue HT. Interviews were conducted with 30 women over age 60 reporting use of systemic HT more than 5 years recruited from an urban area in California and a small city in the Rocky Mountain region. Transcripts of interviews were analyzed using conventional grounded theory methods. RESULTS: Women reported using HT to preserve youthful physical and mental function and prevent disease. Gynecologists had reassured participants regarding risk, about which all 30 expressed little concern. Participants, rather than providers, were the principal drivers of long-term use. CONCLUSIONS: Participants perceived estrogen to have anti-aging efficacy, and using HT imparted a sense of control over various aspects of aging. Maintaining this sense of control was prioritized over potential risk from prolonged use. Our findings provide an additional perspective on previous work suggesting the pharmaceutical industry has leveraged older women's self-esteem, vanity, and fear of aging to sell hormones through marketing practices designed to shape the beliefs of both clinicians and patients. Efforts are needed to: 1) address misconceptions among patients and providers about medically supported uses and risks of prolonged HT, and 2) examine commercial influences, such as medical ghostwriting, that may lead to distorted views of HT efficacy and risk.

The Contribution of Ototoxic Medications to Hearing Loss Among Older Adults.

BACKGROUND: Ototoxicity may interact with the effects of aging, leading to a more severe hearing loss than that associated with age alone. The purpose of this study was to explore the associations between ototoxic medication use and the incidence and progression of hearing loss in older adults with a population-based longitudinal study. METHODS: Epidemiology of Hearing Loss Study participants (n = 3,753) were examined. Medication use was assessed using a standardized questionnaire by the examiners at each examination every 5 year. The ototoxic medications include loop diuretics, nonsteroidal anti-inflammatory drugs, antibiotics, chemotherapeutic agents, quinine, and acetaminophen in this study. Generalized estimating equations model was used as a proportional hazard discrete time analysis. RESULTS: Number of ototoxic medications was associated with the risk of developing hearing loss during the 10-year follow-up period (hazard ratio [HR] = 1.15, 95% confidence interval [CI] = 1.06, 1.25) after adjusting for age, sex, smoking, and body mass index. Loop diuretics (HR = 1.40, 95% CI = 1.05, 1.87) were associated with the 10-year incidence of hearing loss. Nonsteroidal anti-inflammatory drugs (HR = 1.45, 95% CI = 1.22, 1.72) and loop diuretics (HR = 1.33 95% CI = 1.08, 1.63) were associated with risk of progressive hearing loss over 10 years. CONCLUSION: These ototoxic medications are commonly used in older adults and should be considered as potentially modifiable contributors to the incidence and severity of age-related hearing loss.

Hearing Loss: Effect on Hospice and Palliative Care Through the Eyes of Practitioners.

CONTEXT: Discussions regarding values and goals of care are central to providing quality palliative care. An inability to hear during these sensitive discussions may significantly impair the quality of care provided, yet hearing loss (HL) is not formally addressed in these settings or in programs designed to assist practitioners gain advanced communication skills. OBJECTIVE: To gain an understanding of hospice and palliative care practitioners' experiences with HL and its impact on the care provided. METHOD: SurveyMonkey questionnaire eliciting whether and how HL impacted care provided with an open-ended question asking for descriptions of a situation where HL created a problem in communication with an older patient. Responses were analyzed using constant comparative techniques. RESULTS: Of 510 respondents, 464 (91%) reported HL had some or great impact on the quality of care provided, 449 (88%) noted encountering a situation where HL impaired communication with an older adult, and 99 of these participants (22%) provided a specific example. The overarching theme was "Diagnostic and Treatment Uncertainty." Nonmutually exclusive categories underpinning this theme included the following: unable to get needed information, misinterpreting level of understanding, patient misunderstanding of instructions, and goals-of-care errors. CONCLUSION: HL impacts the quality of care provided to persons with serious illness by disrupting the identification, assessment, and treatment of the physical, psychosocial, and spiritual symptoms an individual is experiencing. HL should be formally addressed in programs designed to develop skills in conducting sensitive conversations. Practitioners should screen for HL, use practices that facilitate comprehension, and use assistive listening devices as needed.

Facilitators and Barriers to Interdisciplinary Communication between Providers in Primary Care and Palliative Care.

BACKGROUND: Community-based palliative care (CBPC) plays an integral role in addressing the complex care needs of older adults with serious chronic illnesses, but is premised on effective communication and collaboration between primary care providers (PCPs) and the providers of specialty palliative care (SPC). Optimal strategies to achieve the goal of coordinated care are ill-defined. OBJECTIVE: The objective of this study was to understand the facilitators and barriers to optimal, coordinated interdisciplinary provision of CBPC. METHODS: This was a qualitative study using a constructivist grounded theory approach. Thirty semistructured interviews were conducted with primary and palliative care interdisciplinary team members in academic and community settings. RESULTS: Major categories emerging from the data that positively or negatively influence optimal provision of coordinated care included feedback loops and interactions; clarity of roles; knowledge of palliative care, and workforce and structural constraints. Facilitators were frequent in-person, e-mail, or electronic medical record-based communication; defined role boundaries; and education of PCPs to distinguish elements of generalist palliative care (GPC) and more complex elements or situations requiring SPC. Barriers included inadequate communication that prevented a shared understanding of patients' needs and goals of care, limited time in primary care to provide GPC, and limited workforce in SPC. CONCLUSIONS: Our findings suggest that processes are needed that promote communication, including structured communication strategies between PCPs and SPC providers, clarification of role boundaries, enrichment of nonspecialty providers' competence in GPC, and enhanced access to CBPC.

Communication and Healthcare: Self-Reports of People with Hearing Loss in Primary Care Settings.

Objectives: To assess the experiences of people with hearing loss in healthcare environments to characterize miscommunication and unmet needs, and guide recommendations for improving outcomes and access. Methods: Anonymous survey developed by subject-matter experts was posted on a large national hearing-loss consumer and advocacy organization website and email listserv. Data were collected and managed via RedCAP. Results: Responses were received from 1581 individuals. Respondents reported moderate or significant difficulty communicating with all listed providers. Three communication situations emerged as often presenting communication difficulties: hearing one's name when called in the waiting room, hearing when the speaker's back was turned, and hearing when communicating by telephone. Despite 93% of respondents indicating they sometimes or often let providers know about their hearing loss, 29.3% of all respondents still reported that no arrangements were made to improve communication. Conclusions: This study clearly demonstrates the ongoing difficulties faced by individuals with hearing loss, particularly older adults, as they attempt to navigate both providers and situations associated with a typical primary care office visit. Clinical Implications: Inexpensive and efficient changes to improve communication include (1) Improving one-on-one provider communication by facing the individual with good lighting, clear speaking, and not obstructing one's mouth; (2) Environmental changes such as using visual or tactile alerting devices in waiting rooms and adding noise-dampening carpeting and curtains; and (3) Avoiding telephones and conveying health information in writing.

Implications of Hearing Care Policy for Nurses.

Hearing loss (HL) becomes increasingly common with age and can lead to multiple negative outcomes, including isolation, falls, depression, altered social relationships, and altered cognitive functioning. HL also can affect patient-provider communication and lead to misunderstandings. Despite the negative effects that HL has on multiple domains, less than 20% to 25% of individuals who might benefit from amplification devices and/or hearing aids own them. Barriers to use include stigma, cost, and access. Nurses can play a critical role in promoting appropriate care for individuals with HL and providing access for those who need hearing aids. The current article (a) briefly reviews how history and policies, especially Medicare and Medicaid, but also those defining the practice of audiology and dispensing of hearing aids, affect insurance coverage for hearing care; (b) reviews how a combination of forces brought the need for accessible and affordable hearing care to national attention and resulted in the Over-the-Counter (OTC) Hearing Aid Act; and (c) discusses the implications of the OTC Act for nurses and nursing practice. [Journal of Gerontological Nursing, 44(9), 9-14.].