Measuring outcomes of a communication program for older people with hearing impairment using the International Outcome Inventory

The main objective of this study was to describe the outcomes of a communication education program for older people with hearing impairment using the International Outcome Inventory - Alternative Interventions (IOI-AI) and the version for significant others (IOI-AI-SO). Ninety-six people aged 58 to 94 years participated in an interactive group education program for two hours per week for five weeks. The IOI-AI was administered at one to two weeks after the last educational session and 29 significant others also completed the IOI-Al-SO at this time. Overall, positive results were obtained using both questionnaires, and satisfaction with the program was particularly high. Findings also compared favourably to reports of outcomes for other audiological interventions (i.e., another communication training program and hearing aid fitting). Principal components analysis of the IOI-AI revealed a somewhat different factor structure than the original IOI-HA. The two versions of the 101 applied in this study are recommended as simple and effective measures of the outcomes of alternative interventions.

The psychosocial impact of caregiving on young people who have a parent with an illness or disability: Comparisons between young caregivers and noncaregivers

Objective: To investigate the psychosocial impact of young caregiving by empirically validating prominent qualitative themes.. This was achieved through developing an inventory called the Young Caregiver of Parents Inventory (YCOPI) designed to assess these themes and by comparing young caregivers and noncaregivers. Method: Two hundred forty-five participants between 10 and 25 years completed questionnaires: 100 young caregivers and 145 noncaregivers. In addition to the YCOPI, the following variables were measured: demographics, caregiving context, social support, appraisal, coping strategies, and adjustment (health, life satisfaction, distress, positive affect). Results: Eight reliable factors emerged from the YCOPI that described the diverse impacts of caregiving and reflected the key themes reported in prior research. The factors were related to most caregiving context variables and theoretically relevant stress and coping variables. Compared with noncaregivers, young caregivers reported higher levels of young caregiving impact, less reliance on problem-solving coping, and higher somatization and lower life satisfaction. Conclusions: Findings delineate key impacts of young caregiving and highlight the importance of ensuring that measures used in research on young caregivers are sensitive to issues pertinent to this population.

Quantifying aphasic people's social lives in the context of non-aphasic peers

Background: Developing the knowledge base on the impact of aphasia on people's social lives has become increasingly important in recent times to further our understanding of the broad consequences of communication disability and thus provide appropriate services. Past research clearly indicates that relationships and social activities with family members and others undergo change with the onset of aphasia in an individual, however more evidence of a quantitative nature would be beneficial. Aims: The current research furthers our knowledge by quantifying chronically aphasic older people's regular social contacts and social activities, and places them in context by comparing them with healthy older people of similar age and education. Methods & Procedures: A total of 30 aphasic participants aged 57 to 88 years, and 71 non-aphasic controls aged 62 to 98 years were interviewed by a speech and language therapist using self-report measures of Social Network Analysis (Antonucci & Akiyama, 1987) and Social Activities Checklist (Cruice, 2001, in Worrall & Hickson, 2003). Demographic information was also collected. Descriptive statistics are presented and independent samples t tests were used to examine differences between the groups. Outcomes & Results: Participants with primarily mild to moderate aphasic impairment reported a considerable range of social contacts (5-51) and social activities (8-18). Many significant differences were evident between the two groups' social contacts and activities. On average, aphasic participants had nine fewer social contacts (mainly friend'' relationships) and three fewer social activities (mainly leisure'' activities) than their non-aphasic peers. The majority of controls were satisfied with their social activities, whereas the majority of aphasic participants were not and wanted to be doing more. There were some general similarities between the groups, in terms of range of social contacts, overall pattern of social relationships, and core social activities. Conclusions: Older people with chronic aphasia had significantly fewer social contacts and social activities than their peers. People with aphasia expressed a desire to increase the social activity of their lives. Given the importance of leisure activity and relationships with friends as well as family for positive well-being, speech and language therapists may direct their rehabilitation efforts towards two areas: (1) conversational partner programmes training friends to maintain these relationships; and (2) encouraging and supporting aphasic clients in leisure activities of their choice.

Palliative Medicine:Scoping the level and extent of service provision to people with intellectual disability at end of life Poster Presentation

Background: Concerns exist about the end of life care
that people with intellectual disabilities receive. This population
are seldom referred to palliative care services and
inadequate data sets exist about their place of death.
Aim: To scope the extent of service provision to people
with intellectual disabilities at the end of life by specialist
palliative care and intellectual disability services in one
region of the United Kingdom.
Methods: As part of a larger doctoral study a regional survey
took place of a total sample (n=66) of specialist palliative
care and intellectual disability services using a postal
questionnaire containing forty items. The questionnaire
was informed by the literature and consultation with an
expert reference group. Data were analysed using SPSS to
obtain descriptive statistics.
Results: A total response rate from services of 71.2%
(n=47) was generated. Findings showed a range of experience
among services in providing end of life care to people
with intellectual disabilities in the previous five years, but
general hospitals were reported the most common place of
death. A lack of accessible information on end of life care
for people with learning disabilities was apparent. A few
services (n=14) had a policy to support this population to
make decisions about their care or had used adapted Breaking
Bad News guidelines (n=5) to meet their additional
needs. Both services recognised the value of partnership
working in assessing and meeting the holistic needs of
people with intellectual disabilities at end of life.
Conclusions: A range of experience in caring for people
with intellectual disabilities was present across services,
but more emphasis is required on adapting communication
for this population to facilitate them to participate in their
care. These findings could have international significance
given that studies in other countries have highlighted a
need to widen access to palliative care for this group of
people.

The Broader Impact of Disability Research: Aligning Public Policy with the Experiences of People with Disabilities and Healthcare Providers

Thesis (Ph.D.)--University of Washington, 2016-07

Distance Education in the Professionalization of People with Disability and Prison Inmates

This paper illustrates the impact of the Universidad Estatal a Distancia  (UNED, by its Spanish acronym) in supporting and professionalizing the vulnerable groups of the Costa Rican society, including prison inmates, persons with physical disability, individuals from remote areas, among others.  This study attempts to answer this type of questions: What kind of support has been provided to these sectors?  What are the challenges faced by distance education universities to succeed?  How does UNED have solved these challenges?  What is the impact of the Universidad Estatal a Distancia on the Costa Rican society for the professionalization of its population?  Documentation and statistics have been used in the study; in addition, two people who graduated from UNED were selected to illustrate the type of cases the University serves.(1) Translator’s note: It refers to the “Costa Rican Distance Education State University”.

The impact of pain on the quality of life of people with multiple sclerosis: A community survey

The purpose of this study was to examine the impact of pain on functioning across multiple quality of life (QOL) domains among individuals with multiple sclerosis (MS). A total of 219 people were recruited from a regional MS society membership database to serve as the community-based study sample. All participants completed a questionnaire containing items about their demographic and clinical characteristics, validated measures of QOL and MS-related disability, and a question on whether or not they had experienced clinically significant pain in the preceding 2 weeks. Respondents who reported pain then completed an in-person structured pain interview assessing pain characteristics (intensity, quality, location, extent, and duration). Comparisons between participants with and without MS-related pain demonstrated that pain prevalence and intensity were strongly correlated with QOL: physical health, psychological health, level of independence, and global QOL were more likely to be impaired among people with MS when pain was present, and the extent of impairment was associated with the intensity of pain. Moreover, these relationships remained significant even after statistically controlling for multiple demographic and clinical covariates associated with self-reported QOL. These findings suggest that for people with MS, pain is an important source of distress and disability beyond that caused by neurologic impairments.

Duplicity/complicity : misperforming the social drama of disability

In this paper, I investigate the (mis)performance of ‘passing’ in the context of bodies with disabilities. The desire to conceal, control or contain a body’s idiosyncrasies can be a deceitful act, complicit with dominant cultural assumptions about the benefits of fitting in. Passing, and the performative tricks, techniques and prostheses that support the ‘lie’ of passing, upholding a social contract in which a closeting-as-cure approach accommodates discomfort with difference. In this paper, I consider moments of non-passing, where people are caught out by mistakes or deliberate misperformances of the daily social drama of ability and disability. I reference the work of disabled artists Bill Shannon, Aaron Williamson and Katherine Araniello, who re-perform their daily personal interactions in the public sphere as a sort of guerilla theatre. Their work brings hidden assumptions about how disabled people should act and interact to the brink of visibility. It challenges passers-by to confront their complicity in these discourses by pressing them to re-perform their own spontaneous reactions to bodies that misperform the ‘lie’ of normalcy.

Weaving yarns : the lived experience of Indigenous Australians with adult-onset disability in Brisbane

Indigenous Australians have lower levels of health than mainstream Australians and (as far as statistics are able to indicate) higher levels of disability, yet there is little information on Indigenous social and cultural constructions of disability or the Indigenous experience of disability. This research seeks to address these gaps by using an ethnographic approach, couched within a critical medical anthropology (CMA) framework and using the “three bodies” approach, to study the lived experience of urban Indigenous people with an adult-onset disability. The research approach takes account of the debate about the legitimacy of research into Indigenous Australians, Foucault‟s governmentality, and the arguments for different models of disability. The possibility of a cultural model of disability is raised. After a series of initial interviews with contacts who were primarily service providers, more detailed ethnographic research was conducted with three Indigenous women in their homes and with four groups of Indigenous women and men at an Indigenous respite centre. The research involved multiple visits over a period extending more than two years, and the establishment of relationships with all participants. An iterative inductive approach utilising constant comparison (i.e. a form of grounded theory) was adopted, enabling the generation and testing of working hypotheses. The findings point to the lack of an Indigenous construct of disability, related to the holistic construction of health among Indigenous Australians. Shame emerges as a factor which affects the way that Indigenous Australians respond to disability, and which operates in apparent contradiction to expectations of community support. Aspects of shame relate to governmentality, suggesting that self-disciplinary mechanisms have been taken up and support the more obvious exertion of government power. A key finding is the strength of Indigenous identity above and beyond other forms of identification, e.g. as a person with a disability, expressed in forms of resistance by individuals and service providers to the categories and procedures of the mainstream. The implications of a holistic construction of health are discussed in relation to the use of CMA, the interpretation of the “three bodies”, governmentality and resistance. The explanatory value of the concept of sympatricity is discussed, as is the potential value of a cultural model of disability which takes into account the cultural politics of a defiant Indigenous identity.

Disability, deinstitutionalisation and discourse : an analysis of institutional reform policies in Queensland, 1994-1996

The closure of large institutions for people with intellectual disability and the subsequent shift to community living has been a feature of social policies in most western democracies for more than two decades. While the move from congregated settings to homes in the community has been heralded as a positive and desirable strategy, deinstitutionalisation has continued to be a controversial policy and practice. This research critically analyses the implementation of a deinstitutionalisation policy called Institutional Reform in the state of Queensland from May 1994 until it was dismantled under a new government in the middle of 1996. A trajectory study of the policy from early conceptualisation through its development, implementation and final extinction was undertaken. Several methods were utilised in the research including the textual analyis of policy documents, discussion papers and newspaper articles, interviews with stakeholders and participant observation. The research draws on theories of discourse and focuses on how discourses of disability shape policy and practice. The thesis outlines a number of implications for policy implementation more generally as well as for disability services. In particular, the theoretical framework builds on Fulcher's (1989) disabling discourses - medical, charity, lay and rights - and identifies two additional discourses of economics and inclusion. The thesis argues that competing disability discourses operated in powerful ways to shape the implementation of the policy and illustrates how older discourses based on fear and prejudice were promoted to positions of dominance and power.

Hearing impairment affects older people’s ability to drive in the presence of distracters

OBJECTIVES: To investigate the effects of hearing impairment and distractibility on older people's driving ability, assessed under real-world conditions. DESIGN: Experimental cross-sectional study. SETTING: University laboratory setting and an on-road driving test. PARTICIPANTS: One hundred seven community-living adults aged 62 to 88. Fifty-five percent had normal hearing, 26% had a mild hearing impairment, and 19% had a moderate or greater impairment. ---------- MEASUREMENTS: Hearing was assessed using objective impairment measures (pure-tone audiometry, speech perception testing) and a self-report measure (Hearing Handicap Inventory for the Elderly). Driving was assessed on a closed road circuit under three conditions: no distracters, auditory distracters, and visual distracters. RESULTS: There was a significant interaction between hearing impairment and distracters, such that people with moderate to severe hearing impairment had significantly poorer driving performance in the presence of distracters than those with normal or mild hearing impairment. CONCLUSION: Older adults with poor hearing have greater difficulty with driving in the presence of distracters than older adults with good hearing.