Development and Preliminary Validation of Scales to Measure Enacted, Perceived, and Experienced Hearing Loss Stigma in Health Care Settings.

OBJECTIVES: Qualitative evidence suggests that stigma experienced by people who are d/Deaf and hard of hearing (d/DHH) can reduce willingness to engage with health services. Quantitative evidence remains lacking, however, about how health care providers (HCPs) perceive societal stigma toward people who are d/DHH, how HCPs might enact d/DHH stigma within provider-patient encounters, and what patients who are d/DHH share with providers about those patients' perceptions and experiences of stigma. Such quantitative evidence would allow HCPs to understand if and how stigma influences hearing health decisions made by people who are d/DHH. It could also shape practices to reduce d/DHH stigma within clinical encounters and guide providers in considering stigma as a driving force in their patients' hearing health care decisions. Building that evidence base requires validated quantitative measures. In response, the present study initiated an iterative process toward developing and preliminarily validating HCP self-report measures for different forms of d/DHH stigma. These measures draw upon HCPs' own perspectives, as well as their reports of secondhand information about stigma shared during clinical conversations. We developed and preliminary validated four measures: (1) provider-perceived stigma (HCPs' perceptions of the existence of negative attitudes and stereotypes toward d/DHH individuals in society), (2) provider-enacted stigma (self-reported subtle or indirect acts of stigma HCPs might commit during clinical encounters), (3) secondhand patient-experienced stigma (external acts of stigma reported to HCPs by patients who are d/DHH during clinical encounters), and (4) secondhand patient-perceived stigma (perceptions of negative attitudes and stereotypes reported to HCPs by patients who are d/DHH during clinical encounters). DESIGN: Scale items were extracted from a comprehensive literature review of stigma measures. Question stems and individual items were adapted for HCPs, cognitively tested on 5 HCPs, and pretested with 30 HCPs. The 4 scales were then validated on a sample of primary care providers and hearing care specialists (N = 204) recruited through an online survey. All data were collected in the United States. RESULTS: We conducted an exploratory factor analysis of the four proposed d/DHH stigma HCP stigma scales. Scale items loaded satisfactorily with ordinal alphas ranging between 0.854 and 0.944. CONCLUSIONS: The four measures developed and preliminarily validated in this study can provide opportunities for HCPs to develop a more nuanced understanding of stigma experienced and perceived by their patients who are d/DHH and how that stigma manifests across social contexts, including health care settings. Further, the ability to assess forms of d/DHH stigma in clinical encounters, as well as their association with patient disengagement and resistance to advanced hearing care, could lead to innovative stigma-reduction interventions. Such interventions could then be evaluated using the measures from this article and then applied to clinical practice. We envision these measures being further refined, adapted, and tested for a variety of health care contexts, including primary care settings where hearing difficulties may first be identified and in hearing health care settings where audiologic rehabilitation is initiated.

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.

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.

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.].

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).

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.

"Thoughts Can Kill You": Characterization of Mental Health Symptoms by Ugandan Grandparent-Caregivers in the HIV/AIDS Era.

Studies of caregiving provided to HIV/AIDS orphans by sub-Saharan African grandparents have found that it has physical, financial, and emotional consequences. Our study extended this research by identifying and characterizing the symptoms experienced by Ugandan grandparent- caregivers, particularly as related to the caregiving role, loss and grief. Grounded theory methodology was used to conduct and analyze audio-recorded, semi-structured interviews with 32 grandparents. Findings revealed a cluster of biopsychosocial distress symptoms, especially anguish (driven by traumatic anxiety and disbelief), depression, and somatic symptoms that were linked primarily to psychological distress. The impact of cultural practices and beliefs on these symptoms was also identified. Results have implications for public health, research, and policy changes needed to alleviate symptoms of biopsychosocial distress among Uganda grandparent-caregivers.

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.

Certified Nursing Assistants' Understanding of Nursing Home Residents' Pain.

Pain is a significant problem for nursing home residents, yet its assessment is complex. Certified nursing assistants (CNAs) spend significant time with residents, but their role in understanding residents' pain is largely unexplored. The current qualitative grounded theory study analyzed interviews with 16 CNAs who described their experiences caring for residents in pain. Findings revealed how CNAs understood, recognized, interpreted, and responded to residents' pain. CNAs were found to differentiate between pain that they considered normal (everyday pain) and new pain judged significant enough to report to licensed nurses. CNAs exhibited a holistic understanding of pain, knowledge of strategies to identify and interpret pain, and actions to independently mitigate and report pain. Although additional confirmatory data are needed, the differentiation made between everyday and reportable pain may have important clinical implications suggesting that CNAs should always report to a licensed nurse when they perceive or suspect that residents have pain. [Journal of Gerontological Nursing, 44(4), 29-36.].

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.].

Rates of Recovery to Pre-Fracture Function in Older Persons with Hip Fracture: an Observational Study.

BACKGROUND: Knowledge about expected recovery after hip fracture is essential to help patients and families set realistic expectations and plan for the future. OBJECTIVES: To determine rates of functional recovery in older adults who sustained a hip fracture based on one's previous function. DESIGN: Observational study. PARTICIPANTS: We identified subjects who sustained a hip fracture while enrolled in the nationally representative Health and Retirement Study (HRS) using linked Medicare claims. HRS interviews subjects every 2 years. Using information from interviews collected during the interview preceding the fracture and the first interview 6 or more months after the fracture, we determined the proportion of subjects who returned to pre-fracture function. MAIN MEASURES: Functional outcomes of interest were: (1) ADL dependency, (2) mobility, and (3) stair-climbing ability. We examined baseline characteristics associated with a return to: (1) ADL independence, (2) walking one block, and (3) climbing a flight of stairs. KEY RESULTS: A total of 733 HRS subjects ≥65 years of age sustained a hip fracture (mean age 84 ± 7 years, 77 % female). Thirty-one percent returned to pre-fracture ADL function, 34 % to pre-fracture mobility function, and 41 % to pre-fracture climbing function. Among those who were ADL independent prior to fracture, 36 % returned to independence, 27 % survived but needed ADL assistance, and 37 % died. Return to ADL independence was less likely for those ≥85 years old (26 % vs. 44 %), with dementia (8 % vs. 39 %), and with a Charlson comorbidity score >2 (23 % vs. 44 %). Results were similar for those able to walk a block and for those able to climb a flight of stairs prior to fracture. CONCLUSIONS: Recovery rates are low, even among those with higher levels of pre-fracture functional status, and are worse for patients who are older, cognitively impaired, and who have multiple comorbidities.

Hearing loss education for older adults in primary care clinics: Benefits of a concise educational brochure.

Hearing loss, common in older adults, is associated with negative health outcomes but screening rates in primary care clinics are low and individuals screened or referred often do not follow-through. To address these problems, we worked with 2 primary care clinics to design a simple screening and education protocol for integration into a standard office visit. To assess the effectiveness on the education brochure that was developed, we assessed its impact on individuals age 60 or older who screened positive for possible hearing loss. Ninety-four of 125 screened positive. Seventy-one agreed to participate and were given a brochure along with a brief review of the materials it contained. Of 67 completing follow-up, 23 (34%) sought further testing and 47 (70%) had used the information to enhance communication. A simple educational brochure accompanied by a brief review of its contents may enhance effective use of hearing healthcare services. (147).

Patient Characteristics Associated With a Successful Response to Nurse-Led Care Programs Targeting the Oldest-Old: A Comparison of Two RCTs.

BACKGROUND: To improve the effectiveness of community-based care programs, especially those targeting the oldest-old population (80+), data are needed that elucidate those factors associated with a successful response to the intervention. Two comparable nurse-led care programs have been evaluated in two large randomized controlled trials (RCTs), one in Switzerland and one in the Netherlands. AIMS: To identify common patient characteristics that are related to a successful response to proactive nurse-led care, we explored if and to what extent, identical factors were present in both study populations. METHODS: A secondary data analysis using trial data from the intervention group of both RCTs was conducted. The study sample consisted 461 older adults, 230 from the U-PROFIT trial (the Netherlands) and 231 from the HPC trial (Switzerland). The mean age of the total sample was 85.1 years (SD 3.7). The UPROFIT intervention, delivered by registered nurses, included a frailty assessment and a comprehensive geriatric assessment (CGA) at home followed by an individualized evidence-based care plan, care coordination, and follow-up. The HCP intervention was delivered by advanced practice nurses consisting of four home visits and three phone calls, and was guided by the principles of health promotion, empowerment, partnership, and family-centeredness. A successful response was defined as "stable" or "no decline" in daily functioning at follow-up. Daily functioning was measured with 13 items of activities of daily living and instrumental activities of daily living. Multivariate logistic regression models were applied to calculate the association between individual characteristics and a successful response. RESULTS: Almost half of the participants in the U-PROFIT trial (50.9%), and two-thirds (65.7%) of the participants in the HCP trial had a successful response at follow-up. Fewer comorbidities and a better self-rated health had the strongest predictive value for benefiting from the intervention (OR = 0.83 [95% CI 0.66-1.03], and OR = 1.5 [95% CI 0.92-2.45]), respectively. LINKING EVIDENCE TO ACTION: Two large RCTs demonstrated that a preventive nurse-led care program can preserve daily functioning in the oldest-old population. Older people with few comorbidities and higher self-rated health had a higher likelihood of a positive outcome. Unraveling the characteristics associated with a successful response provides important information for further refining and targeting an intervention to obtain maximum effectiveness. More effort is needed to modify interventions for the oldest-old with multiple morbidities and low levels of education.

Hearing loss in an aging American population: extent, impact, and management.

Despite contributing substantially to disability in the United States, age-related hearing loss is an underappreciated public health concern. Loss of hearing sensitivity has been documented in two-thirds of adults aged 70 years and older and has been associated with communication difficulties, lower health-related quality of life, and decreased physical and cognitive function. Management strategies for age-related hearing loss are costly, yet the indirect costs due to lost productivity among people with communication difficulties are also substantial and likely to grow. Hearing aids can improve health-related quality of life, but the majority of people with documented hearing loss do not report using them. Uncovering effective means to improve the utilization of hearing health care services is essential for meeting the hearing health care demands of our aging population. The importance of hearing for general well-being warrants an effort to enhance awareness among the general population of the indications of hearing loss and options for assistance.

Access to care for hearing loss: policies and stakeholders.

Although hearing loss is common in old age and associated with a variety of negative outcomes, hearing aids and related services are not covered by Medicare or many other forms of insurance. Out-of-pocket costs are expensive and thus serve as a barrier for many individuals. Efforts at the national level to broaden coverage can confront surprising or unexpected opposition from a variety of groups. This article discusses how an experience as an Atlantic Philanthropies Health and Aging Policy Fellow helped inform how gaining an understanding of the positions held by such stakeholder groups is critical to developing strategies to promote a more effective payment structure that would improve access to hearing care. The implications for nurses desiring to influence policy are also highlighted.

Family caregivers of individuals with frontotemporal dementia: examining the relationship between coping and caregiver physical and mental health.

To identify strategies to assist family caregivers of individuals with frontotemporal dementia (FTD) in dealing with their caregiving demands, nurses must understand these family members' unique needs and how they currently deal with their demands. The purpose of this study was to examine the relationship between coping and caregiver physical and mental health among FTD family caregivers. Participants were primary caregivers of individuals with FTD (with behavioral symptoms) living at home (N = 61). A small positive association was noted between problem-focused coping and caregiver physical health (r = 0.29, p < 0.05), and a small but nonsignificant positive correlation was noted between emotion-focused coping and caregiver mental health (r = 0.21, p = 0.10). However, multiple regression analysis showed that emotion-focused coping (ß = 0.46, p < 0.05) made a statistically significant, unique contribution to caregiver mental health and explained approximately 14% of its variance. These findings support the potential value of emotion-focused coping strategies when dealing with behavioral symptoms manifested by individuals with FTD.

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.