Stereotyping as a barrier to the social participation of older adults with low vision: a qualitative focus group study.

OBJECTIVE: In order to better understand the barriers that limit the social participation of older people with low vision, the aim of this study was to describe and clarify the factors that shape the social participation of older adults with vision loss. METHODS: As part of a study on rehabilitation access barriers, six qualitative focus groups were conducted in a private room in a hospital, with 21 individuals with low vision (aged 38-92 years) who had or had not accessed low vision services. During the focus groups, participants often spoke of the challenges they faced when interacting with people with 'normal' vision; this discussion led to a modification of the interview guide in order to capture barriers to social participation. Focus group discussions were audiotaped and transcribed, and content analysis was conducted. RESULTS: Content analysis revealed that personal as well as environmental factors influenced the social participation of older adults with low vision. Four themes emerged: 1) experiencing the onset of impairment and degenerating ability, 2) the physical environment, 3) attitudes and responses from others and 4) individual internal attitude and responses during social interactions. Lived and perceived stigma from the perspective of the insider (person living with low vision) interacting with an outsider (person with 'normal' vision) and difficult environmental contexts were described as barriers to social participation and optimal functioning. CONCLUSION: At a personal level, transitioning from an outsider to an insider influenced self-identity and social participation. Further, insiders experiencing stereotypes associated with older adults who are blind had a negative impact on their social participation. Findings highlight the importance of stigma and stereotyping in the lived experience of older adults with low vision. Stigma is persistent, but strategies to reduce stigma will ultimately facilitate the social participation of older adults with low vision.

Exploring Professionals' Experiences in the Rehabilitation of Older Clients with Dual-Sensory Impairment.

En vue de mieux comprendre et d'améliorer le processus de réadaptation des personnes âgées présentant à la fois une déficience auditive et visuelle, soit une double déficience sensorielle (DDS), cette étude s'est penchée sur les perspectives des professionnels de la santé qui œuvrent chez cette population. Treize professionnels aux parcours variés ont été interviewés en lien avec leur expérience de travail auprès de personnes âgées avec DDS. Les entrevues ont été transcrites et codées, et une analyse de contenu a été effectuée. Les participants des diverses professions ont perçu qu'ils devaient assumer les rôles additionnels suivants : (1) conseiller, (2) guide, (3) formateur ou rééducateur. Ces rôles consistaient à aider les personnes avec DDS et leurs familles présentant une dépression, des problèmes d'acceptation, des consultations répétées et des parcours complexes dans le système de santé. Selon les professionnels interviewés, ces rôles supplémentaires accroissent leur charge de travail et les confrontent à des problématiques pour lesquelles ils n'ont pas reçu de formation. Ils suggèrent l'implantation d'une formation sur les DDS pour les professionnels et les membres de la famille concernés, ainsi qu'une approche de réadaptation en équipe multidisciplinaire.To better understand and improve the rehabilitation process of older adults with sensory losses in both hearing and vision or dual sensory impairment (DSI), this study explored the perspectives of health care professionals who work with this population. Thirteen individuals, with varied professional backgrounds, were interviewed about their experiences in working with older adults with DSI. We transcribed and coded the interviews, then conducted content analysis. Regardless of their professional backgrounds, the participants reported additional roles that they perceived they fulfilled: (a) counsellor, (b) navigator, and (c) trainer and re-trainer. These roles involved helping individuals with DSI, and their family, with depression, acceptance, repeat consultations, and way-finding through the health system. From the professionals' perspective, these additional roles increase workload and place them in situations they were not trained for. They suggest education for all professionals and for family members working with people with DSI; moreover, they suggest a multidisciplinary team rehabilitation approach.

Reported benefits of peer support group involvement by adults with hearing loss.

OBJECTIVE: The purpose of this study was to better understand the benefits of self-help group involvement by adults with hearing loss. DESIGN: A secondary content analysis of interview transcripts of participants from a previous study on the impact of stigma on help-seeking was carried out. STUDY SAMPLE: Ten members (aged 55-76 years) of self-help groups for persons with hearing loss in the United States of America and Canada participated in the interviews. RESULTS: Three themes describing the benefits of self-help group participation emerged: (1) Practical and accessible information about hearing loss; (2) Social belonging leading to personal transformation; and (3) A new and mutually beneficial direction. CONCLUSIONS: The findings are discussed in relation to the "helper therapy principle", as well as group audiological rehabilitation.

Assessing the stigma content of urinary incontinence intervention outcome measures.

The goal of this narrative review is to evaluate the efficacy of available questionnaires for assessing the outcomes of "continence difficulty" interventions and to assess the selected questionnaires concerning aspects of stigmatization. The literature was searched for research related to urinary incontinence, as well as questionnaires and rating scale outcome measurement tools. The following sources were searched: Cochrane Library, EMBASE, Medline, and PubMed. The following keywords were used separately or in combination: "Urinary incontinence," "therapy," "treatment outcome," "patient satisfaction," "quality of life," "systematic reviews," "aged 65+ years," and "questionnaire." The search yielded 194 references, of which 11 questionnaires fit the inclusion criteria; 6 of the 11 questionnaires did not have any stigma content and the content regarding stigma that was identified in the other five was very limited. A representative model of how stigma impacts continence difficulty interventions was proposed. While the 11 incontinence specific measurement tools that were assessed were well researched and designed specifically to measure the outcomes of incontinence interventions, they have not been used consistently or extensively and none of the measures thoroughly assess stigma. Further studies are required to examine how the stigma associated with continence difficulty impacts upon health care interventions.

Stereotypes Associated With Age-related Conditions and Assistive Device Use in Canadian Media.

PURPOSE OF THE STUDY: Newspapers are an important source of information. The discourses within the media can influence public attitudes and support or discourage stereotypical portrayals of older individuals. This study critically examined discourses within a Canadian newspaper in terms of stereotypical depictions of age-related health conditions and assistive technology devices (ATDs). DESIGN AND METHODS: Four years (2009-2013) of Globe and Mail articles were searched for terms relevant to the research question. A total of 65 articles were retained, and a critical discourse analysis (CDA) of the texts was conducted. The articles were coded for stereotypes associated with age-related health conditions and ATDs, consequences of the stereotyping, and context (overall setting or background) of the discourse. RESULTS: The primary code list included 4 contexts, 13 stereotypes, and 9 consequences of stereotyping. CDA revealed discourses relating to (a) maintaining autonomy in a stereotypical world, (b) ATDs as obstacles in employment, (c) barriers to help seeking for age-related conditions, and (d) people in power setting the stage for discrimination. IMPLICATIONS: Our findings indicate that discourses in the Canadian media include stereotypes associated with age-related health conditions. Further, depictions of health conditions and ATDs may exacerbate existing stereotypes about older individuals, limit the options available to them, lead to a reduction in help seeking, and lower ATD use. Education about the realities of age-related health changes and ATDs is needed in order to diminish stereotypes and encourage ATD uptake and use.

Usability of assistive listening devices by older adults with low vision.

PURPOSE: This study examines the performance of individuals with both hearing and vision loss when using assistive listening devices. METHODS: Older adults (age 60-100) with low vision only (n = 23), combined vision and hearing loss (n = 25) and a control group (n = 12) were asked to assemble a pocket talker, and operate a talking clock and an amplified telephone. They either received minimal or no instruction. Success at using the devices properly, as well as performance speed, was recorded. RESULTS: The proportion of individuals with sensory loss that was able to complete our naturalistic tasks without mistakes ranged from 20% to 95%, depending on the device, the task complexity and the instruction provided. Both instruction as well as simple repetition had statistically significant and separate beneficial effects; however, neither was able to bring success to 100% on any device. Speed and task success were linked in an intuitive way, whereby individuals who succeeded at a task also performed it faster. CONCLUSIONS: Even minimal explanation during the introduction of assistive listening devices to persons with low vision facilitates user success. Device visibility, cognitive and motor complexity of the task, as well as manual dexterity warrant further investigation as potential barriers to device use. Implications for Rehabilitation Hearing rehabilitation with individuals affected by vision loss requires additional attention and time to accommodate challenges with visibility and task complexity. Even minimal rehabilitation interventions can improve success and speed of device use. Repetition (practice) and instruction (strategy) have independent beneficial effects on device use. Dexterity, visibility, hand-eye-coordination, task complexity and cognitive ability need to be considered when assigning assistive devices for older adults with vision and/or hearing loss.

Continence Across Continents To Upend Stigma and Dependency (CACTUS-D): study protocol for a cluster randomized controlled trial.

BACKGROUND: Urinary incontinence occurs in 40 % of women aged 65 years and over; however, only 15 % seek care and many delay healthcare seeking for years. Incontinence is associated with depression, social isolation, reduced quality of life, falls and other comorbidities. It is accompanied by an enormous cost to the individual and society. Despite the substantial implications of urinary incontinence on social, psychological and physical well-being of older women, the impact of continence promotion on urinary symptom improvement and subsequent effects on falls, quality of life, stigma, social participation and the cost of care remains unknown. METHODS: This study is a mixed methods multi-national open-label 2-arm parallel cluster randomized controlled trial aiming to recruit 1000 community-dwelling incontinent women aged 65 years and older across Quebec, Western Canada, France and United Kingdom. Participants will be recruited through community organizations. Data will be collected at 6 time points: baseline and 1 week, 3 months, 6 months, 9 months and 12 months after baseline. One of the primary objectives is to evaluate whether the continence promotion intervention improves incontinence symptoms (measured with the Patient Global Impression of Improvement questionnaire, PGI-I) at 12 months post intervention compared to the control group. Other co-primary outcomes include changes in incontinence-related stigma, fall reduction, and incremental cost-effectiveness ratio and quality-adjusted life years. Data analysis will account for correlation of outcomes (clustering) within community organizations. A qualitative sub-study will explore stigma reduction. DISCUSSION: Community-based continence promotion programs may be a cost-effective strategy to reduce urinary incontinence, stigma and falls among older women with untreated incontinence, and simultaneously improve quality of life and healthy active life expectancy. TRIAL REGISTRATION: ClinicalTrials.gov: NCT01858493 , registered 13 May 2013.

Social identity management strategies used by workers with acquired hearing loss.

OBJECTIVES: There is a paucity of knowledge about social identity-management by persons with hearing loss. The objective of the study was to gain an understanding from the perspective of the participants, the ways in which workers with acquired hearing loss manage their identity in the workplace. PARTICIPANTS: Twelve persons with acquired hearing loss, who were gainfully employed in a variety of settings and occupations in three Canadian cities, participated in audio-recorded semi-structured interviews. METHODS: A secondary qualitative analysis was conducted on transcripts of interviews collected in a previous study on factors that influence disclosure of hearing loss in the workplace. A qualitative descriptive research paradigm was adopted and content analyses were used to extract pertinent information from verbatim transcripts. RESULTS: Participants described a range of identity-management strategies enacted in the workplace. Five recurrent themes emerged as important considerations in the Art of Identity Management in the workplace: 1. Managing the situation, 2. Having a buddy system, 3. Feeling comfortable, 4. Using personal resources, 5. It gets easier with time. CONCLUSIONS: Social identity-management is a complex process. Although persons with acquired hearing loss experience different challenges from other persons with invisible stigmas, similarities in the range of social identity-management strategies employed were evident in our findings. In addition, the social cognitive learning model of disclosure appears to be relevant to the experiences of our participants. The implications of the findings emphasize the importance of all stakeholders working collaboratively to address the issues of the growing population of workers with hearing loss.

The standpoint of persons with hearing loss on work disparities and workplace accommodations.

OBJECTIVES: The perspectives of persons who live and work with hearing loss were sought to examine workplace accommodation challenges and strategies. PARTICIPANTS: A convenience sample of seven older adults with hearing loss participated in in-depth interviews. METHODS: A systematic grounded theory approach informed the study design and analysis. Categories of facilitators and challenges in the data were identified through axial coding and clustering. Core categories of social processes emerged through constant comparison and theoretical sampling of the data to reveal the actions and interactions used to negotiate or implement adaptations or workplace accommodations. RESULTS: Persons with hearing loss use a realm of strategies to live and work with a hearing loss. Social processes used to navigate the challenges to working with hearing loss and to manage optimal work performance included: self-accommodation, self-advocacy, self-management of hearing loss, and lobbying. CONCLUSIONS: Success in overcoming work disparities for persons with hearing loss requires individuals to take control of identifying their needs within the workplace and at home, and to negotiate for specific accommodations. These strategies and processes draw attention to the need for a repository on contextualized workplace accommodation strategies for improving communication and hearing in the workplace. Further to this a best practice guide for use by workers, employers, and work rehabilitation and health care workers is indicated.

Evaluating use and outcomes of mobility technology: a multiple stakeholder analysis.

PURPOSE: This qualitative, multi-site study compared and contrasted the outcomes of mobility technology (MT) and the factors influencing these outcomes from the perspective of MT users, caregivers, and professionals involved in MT service delivery. METHOD: Qualitative focus groups were held in the USA and Canada with multiple stakeholder groups (consumer: n = 45, caregiver: n = 10, service provider: n = 10). Data were analyzed thematically. RESULTS: MT outcomes were conceptualized by participants as a match between expectations for MT and the actual outcomes experienced. Several factors influenced the match including a) MT features, b) environmental factors (e.g. built/physical environment, societal context of acceptance, MT delivery systems/policies), and c) the ability to self-manage the interaction across person, technology and environment, which involved constant negotiation and strategizing. Stakeholders identified MT outcomes that corresponded to ICF levels including body structure and function, activity, and participation across environments; however, varied on their importance and influence on MT impact. CONCLUSIONS: The conceptual fit model and factors related to self-management of MT represent new knowledge and provide a framework for stakeholder-based evaluation of MT outcomes. Implications for MT assessment, service delivery, outcomes research, and interventions are discussed.

Factors that influence disclosure of hearing loss in the workplace.

OBJECTIVE: The objective of the study was to identify factors that lead individuals to conceal or disclose their hearing loss in the workplace. DESIGN: A qualitative research paradigm called qualitative description was selected to address this issue. STUDY SAMPLE: Twelve people who had an adult onset hearing loss, and were gainfully employed, participated in audio-recorded semi-structured interviews designed to probe issues related to disclosure of hearing loss. A photo elicitation interview technique was employed during the interviews. Content analyses were used to extract pertinent information from verbatim transcripts. RESULTS: Five recurring themes emerged as important considerations in relation to this topic: (1) perceived importance of the situation; (2) perceived sense of control; (3) community affiliation; (4) burden of communication; and (5) coexisting issues related to hearing loss. CONCLUSIONS: The findings are discussed in relation to other concealable stigmatizing traits, stigma-theory, and social-cognitive theory. The clinical implications of these findings are discussed, with particular emphasis placed on worker self-efficacy.

Stigma: a negative and a positive influence on help-seeking for adults with acquired hearing loss.

There are stigmas associated with many chronic health conditions that emerge in adulthood. People who present manifestations of hearing loss are often perceived by others to be cognitively diminished, less able, and socially incompetent. In order to avoid being identified as a member of a stigmatized group, individuals with hearing loss may choose not to seek health services or fail to comply with recommended treatments. The purpose of this study was to better understand how stigma impacted upon the help-seeking activities of adults with an acquired hearing loss. Ten people who had hearing loss, and were members of peer-support groups participated in audio-recorded semi-structured interviews. Verbatim transcripts were analysed using thematic analyses. Analyses revealed that lasting decisions about hearing loss management were made following 'critical junctures', when the negative stress found in the respondent's social and physical environment far outweighed positive energy, or when the positive energy found in the respondent's environment far outweighed the negative stress. The time course development of these processes is described.

Coping with extended facedown positioning after macular hole surgery: a qualitative diary analysis.

BACKGROUND: Patients undergoing facedown positioning have to overcome physical and psychological challenges; however, their perspective and experience are rarely documented in the research literature. OBJECTIVES: The objective of this study was to examine the content of a self-motivated diary written by a person who underwent 77 days of facedown positioning after macular hole surgery. Her narrative about the obstacles during this postsurgical requirement resulted in an insightful description of several core topics relevant to patient care. METHODS: The diary content was summarized using qualitative description procedures. This document was selected due to its unique rich nature. Thematic analysis was used to summarize and describe main topics of importance within the diary. Additional data sources (i.e., medical file, research literature, patient follow-up, and Web sites) were consulted to provide a more comprehensive understanding of the diary content. RESULTS: On the basis of proximity of coded quotes and richness of content, seven areas of interest emerged, including the patient's emotional state, quality of sleep, nutritional considerations, visual functioning, physical status, social support, and entertainment needs. DISCUSSION: Potential patients and their caregivers can learn from the experiences of an individual who has coped successfully with this treatment. This analysis builds the groundwork for the refinement of guidelines for overcoming prevalent physical and psychological barriers.

Factors that influence the use of assistance technologies by older adults who have a hearing loss.

The objective of this study was to describe and better understand the factors that influence the use of assistance technologies by older adults who have a hearing loss. We were interested in adopting a methodological approach that would provide an in-depth account of individual experiences related to the use of these technologies. A qualitative research design was therefore selected. Audio-recorded interviews were conducted with ten individuals who were 65 years of age or older and were current successful assistance technology users. Thematic analysis was used to draw meaning from the interview transcripts. The results suggest that successful use of these assistance technologies involves the recognition of hearing difficulties, an awareness that technological solutions exist, consultation for and acquisition of devices, and adapting to device use and modified behaviour. These four landmarks seem to be crucial stages when people either move toward successful assistance technology use or are discouraged from assistance technology use. Based on these results, a representative model of assistance technology awareness, acquisition and utilization is proposed.