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.

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.].

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.

Spousal interrelations in self-reports of cognition in the context of marital problems.

BACKGROUND: Problems with cognitive function are common among older adults, yet there is little research assessing the extent to which the cognitive problems of older husbands and wives are related to those of their partners and whether any observed relationships are moderated by gender or marital quality. OBJECTIVES: Our purpose was to analyze longitudinal relationships between older spouses' cognitive function and the cognitive function of their partners 5 years later, as well as to assess moderating roles of gender and marital quality. METHODS: The subjects were 378 community-dwelling couples aged 46-89 years at baseline who were followed for 5 years. Cognitive function was measured with a scale assessing problems remembering names, finding the right word, misplacing things and paying attention. Marital quality was assessed by comparing those reporting marital problems often or sometimes with those reporting marital problems rarely or never. All data were collected by self-report. Statistical models adjusted for paired data where appropriate and included partner cognitive function, age, chronic conditions and financial hardship. Stratified models assessed moderating roles of gender and marital problems. RESULTS: We found a negative relationship between husbands' baseline lower cognitive function and wives' subsequent cognitive function but only for the wives reporting marital problems. We found no comparable relationship between wives' baseline lower cognitive function and their husbands' subsequent cognitive function. CONCLUSIONS: Our gender-specific finding for wives is consistent with the gender differences noted in 2 previous studies. The limitation to wives with problems in their marriages is a new finding and might follow increased stress and depression responding to changes in their husbands' cognitive functioning.

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.

Factors predicting blood pressure control in older Chinese immigrants to the United States of America.

AIM: This paper is a report of a study of the extent to which demographic characteristics, medication-related factors, hypertension-related knowledge and medication adherence predict systolic and diastolic blood pressure. BACKGROUND: Little is known about predictors of hypertension control in Chinese elders. METHODS: A longitudinal study with a 3-month follow-up was conducted with 90 Chinese immigrants to the United States of America aged ≥65 years and recruited from 2006 to 2007. The independent variables were measured at baseline. Blood pressure was measured at 3 months. Multiple linear regression analysis was used to evaluate the independent effects of seven variables on change in blood pressure at 3 months. RESULTS: Participants ranged in age from 66 to 92 years (Mean 76.7, sd 6.6). The overall regression model for systolic blood pressure was statistically significant (R² = 0.32, F = 4.37, P < 0.01). A higher number of prescribed oral medications (sr² = 0.06, t = 2.42, P = 0.02) and lower medication adherence (sr² = 0.07, t = -2.60, P = 0.01) were statistically significant determinants of an increased systolic blood pressure. The overall regression model for diastolic blood pressure was statistically significant (R² = 0.21, F = 2.39, P = 0.03). Male gender (sr² = 0.06, t = 2.26, P = 0.03) and lower medication adherence (sr² = 0.11, t = -3.03, P < 0.01) were statistically significant determinants of an increased diastolic blood pressure. CONCLUSION: A greater number of prescribed medications and lower adherence predicted higher level of systolic blood pressure. Male gender and lower adherence were significantly associated with higher level of diastolic blood pressure. These predictors should be considered when designing interventions to help Chinese elders achieve better hypertension management.

Sleep in older adults with Alzheimer's disease.

Sleep in older adults with Alzheimer's disease can often be extremely fragmented, thus disturbing normal sleep-wake rhythms. This poor-quality sleep is challenging for caregivers and frequently results in admitting older adults to long-term care institutions. Many variables, such as genes, medications, depression, and environmental factors, influence sleep in persons with Alzheimer's disease. Interventions, such as exposure to light, melatonin therapy, sleep hygiene, and physical activity, are commonly used to treat or to prevent sleep problems. Neuroscience nurses can play an important role in assessing sleep characteristics and related factors, educating caregivers and staff, providing family members with emotional support, and conducting research.

Understanding physical health of older adults with schizophrenia: building and eroding trust.

Adults with schizophrenia are living longer, and data suggest they face health care disparities contributing to poor physical health. This article presents findings from a study that explored the understanding of physical health among older adults with schizophrenia. One goal was to understand factors that influence experienced health care disparities. This grounded theory study used semi-structured interviews and participant observation and was conducted among 28 older adults with schizophrenia living in a variety of settings. Trust evolved as a dynamic process that was built with factors of respect, caring, advocacy, and consistency and eroded through factors of disrespect, not being heard, lack of time and provider inaction, and stigmatization. When trust is given and received between providers, the health care system, and the older adult with schizophrenia, the adult's physical health outcomes may improve and health care disparities may decline. These findings provide insights to promote optimal physical health outcomes.