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 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 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.

The Whole Package: A Multi-Component Smoking Cessation Intervention for Adults With Serious Mental Illness: A Qualitative Study.

Introduction: Smoking is one of the most important modifiable risk factors for excess morbidity and mortality in adults with serious mental illness (SMI). Many smokers with SMI are reportedly motivated to quit, however success rates among these smokers remain low and evidence-based treatment targeting this vulnerable group is limited. The purpose of this paper is to report the results of a qualitative inquiry of participants. Methods: We conducted a pilot two-arm randomized controlled trial (RCT) targeting adults with SMI. Our smoking cessation intervention included: (a) group-based physical activity (PA) game intervention (50 minutes, 3X/week for 12 weeks), (b) pharmacotherapy (bupropion or nicotine replacement therapy), and (c) smoking cessation counseling. Upon completion of the program, participants in the active and control groups completed a qualitative semi-structured interview in order to determine how the program impacted their smoking cessation. Grounded Theory methodology guided our data collection and analysis. Results: Twenty participants completed an interview. Participants described how the "whole package" of the 3 components of the intervention were critical to their smoking cessation process. The group-based program provided the structure, resources, and encouragement needed to start the process of quitting. Conclusion: Adults with SMI need support, resources, and engaging activities as they begin quitting and practice the skills needed to quit.

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.

Associations among hearing loss, multiple co-occurring symptoms, and quality of life outcomes in cancer survivors.

PURPOSE: Evaluate for differences in demographic and clinical characteristics, occurrence of common symptoms, symptom severity scores, and quality of life (QOL) outcomes in survivors with (n = 155) and without (n = 118) audiometrically confirmed hearing loss. METHODS: Survivors, who were recruited from throughout the San Francisco Bay area, completed the self-report questionnaires to obtain the information of demographic and clinical characteristics; the occurrence and severity of depression, anxiety, fatigue, decrements in energy, sleep disturbance, pain, and cognitive impairment; and the general and cancer-specific QOL outcomes. Parametric and non-parametric tests were used to evaluate for differences between the two survivor groups. RESULTS: Survivors with audiometrically confirmed hearing loss were older, more likely to be male, were more likely to be unemployed, report a lower annual household income, and had a higher comorbidity burden. Except for the severity of worst pain, no between-group differences were found in the occurrence rates for or severity of any of the symptoms. Survivors with hearing loss reported worse physical function and general health scores. CONCLUSIONS: While no between-group differences in symptom occurrence rates and severity scores were found, across the total sample, a relatively high percentage of survivors who were over 6 years from their cancer diagnosis reported clinically meaningful levels of depression (25%), anxiety (50%), fatigue (40%), decrements in energy (70%), sleep disturbance (58%), cognitive impairment (57%), and pain (60%). IMPLICATIONS FOR CANCER SURVIVORS: Clinicians need to perform routine assessments of hearing loss, as well as common co-occurring symptoms and initiate individualized symptom management interventions.

Cancer survivors and neurotoxic chemotherapy: hearing loss and tinnitus.

OBJECTIVES: Little is known about hearing loss and tinnitus associated with neurotoxic chemotherapy. Study evaluated for differences in occurrence rates and effects of hearing loss and tinnitus in survivors who received a platinum alone, a taxane alone or a platinum and taxane containing regimen. METHODS: Total of 273 survivors with breast, gastrointestinal, gynaecological or lung cancer completed self-report measures of hearing loss and tinnitus and had an audiometric assessment that obtained pure tone air conduction thresholds bilaterally at frequencies of between 0.25 kHz to 16.0 kHz. To adjust for age-related and gender-related changes in hearing, each survivor's audiogram was evaluated using the National Health and Nutrition Examination Survey-modified Occupational Safety and Health Administration standards. Survivor was classified as having hearing loss if at any frequency they scored poorer than the 50th percentile for their age and gender. Survivors were categorised as having tinnitus if they reported that for >10% of their time awake, they were consciously aware of their tinnitus. Differences among the chemotherapy groups were evaluated using parametric and non-parametric tests. RESULTS: For most of the demographic and clinical characteristics, no differences were found among the three chemotherapy groups. Occurrence rates for audiogram-confirmed hearing loss ranged from 52.3% to 71.4%. Occurrence rates for tinnitus ranged from 37.1% to 40.0%. No differences were found among the three chemotherapy groups in the occurrence rates or effects of hearing loss and tinnitus. CONCLUSION: These findings suggest that regardless of the chemotherapy regimen common mechanistic pathway(s) may underlie these two neurotoxicities.

A Call to the CMS: Mandate Adequate Professional Nurse Staffing in Nursing Homes.

Editor's note: This article is by 22 nursing gerontology experts who are all advocates of nursing home reform. They are listed at the end of this article.

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.