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Abstract  The authors sought to modify and apply Pearlin et al.'s "Stress and Coping Framework" model (which was designed to guide research on family caregiving) to research that could help them understand the experiences of staff carers of persons with intellectual disabilities affected by dementia. The authors, two experienced researchers and practitioners in intellectual disabilities and dementia, reviewed the existing literature on the "Stress and Coping Framework" model, as well as additional literature on family and staff caregiving for persons with dementia and intellectual disabilities, in an attempt to identify the model's key variables and to determine whether these variables could be applied to research with staff. They determined that the domains of the "Stress and Coping Framework" model appeared relevant for staff carer research; but proposed changes in some of the variables defining those domains (e.g., some of the original demographic variables were dropped as less important for staff carers and some organizational variables are added). The authors concluded that with modification, Pearlin et al.'s model of stress and coping is a useful guide to support research on the experiences of staff carers of persons with intellectual disabilities affected by dementia. To this end, they have proposed a modified "Stress and Coping Framework" structure that can be applied to research in the area of staff burden.

Abstract  This article reports upon the usefulness of a focus group strategy to develop a consensus on key health and aging research recommendations for persons with intellectual disabilities (ID). This strategy was employed at an opportunistic situation, a consensus meeting (the Tampa Scientific Conference on Intellectual Disability, Aging and Health) which involved 75 diverse background participants from the United States and other countries who came together to evolve recommendations for aging health policy. The meeting's participants included basic and applied researchers with a range of professional interests (physicians, psychologists, sociologists, social workers, and nurses), public policy workers and administrators, and family members and persons with ID. A working group process, a focus group strategy, was used successfully to develop recommendations in the areas of medical and epidemiological issues, syndrome‐specific concerns, and the promotion of healthy aging. The approach used was found to be particularly helpful in reconciling diverse researcher and consumer perspectives, considering both basic and applied research issues, and yielding both national‐specific and internationally relevant recommendations.

Action research in the acute hospital environment is made complex by competing and unequal voices. Acute hospitals and care in this sense refer to those intended for short-term treatment of illnesses. Care is provided by specialist teams comprising members of different disciplines/professions and is overseen by a complex hospital management and administrative structure. The respective voices of different specialist fields, disciplines, managers and patients must continually interact with each expressing a different personal and professional worldview. Gaining support from managers, medical providers and medical teams usually requires an emphasis on the presentation of evidence in which objectivity and parsimony is ascribed greater value than more detailed narratives that include a patient's personal details and biography. A cooperative inquiry project with respiratory and palliative care nurses explored how palliative care needs of patients with advanced chronic obstructive pulmonary disease might be better addressed and comfort provided. This inquiry brought to the fore the value-based nature of everyday speech in which voices reflecting narratives of management, medicine, nursing, illness and disease were continually shifting. We came to understand meaningful participation as an invitation to consciously engage competing voices that are inherent in everyday practice with a view to delivering better comfort care to patients.

"Action research provides a framework for developing practice in healthcare.
While developing practice typically implies a combination of patient
centeredness, quality improvement and change, conflicts arise in how
concepts such as patient centredness are defined. Developing practice
invites attention to positionality and engagement with policy directives,
trends in clinical care, and other disciplines each with their own language
stratification reflecting particular sets of values and beliefs. Our process of
engagement is value-based, requiring attention to different and often conflicting
languages or worldviews. We understand practice development as
responding to different calls from the system, our individual disciplines,
patients and changing discourses in healthcare, each exerting different
pressures at different times. This paper describes an action research project
aimed at developing nursing practice through engaging with two conflicting
philosophies of care. We illustrate the contribution made by a particular
understanding of Bildung to engaging with positionality, different
voices in healthcare and the context of care in a complex environment.
Bildung, as self-cultivation, invites engagement with other as an underpinning
for developing practice beginning with first person inquiry. The
idea of Bildung drew attention to the local moral world of nursing and the
experience of dual citizenship. Dual citizenship reflected engagement with
conflicting care philosophies and notions of evidence." (author's abstract)

AbstractBackgroundFriendship is important to quality of life, yet people with intellectual disability have more restricted social networks and fewer friends outside family and support staff.MethodData from a nationally representative longitudinal study of older adults with intellectual disability (aged >40) examined rates and types of friends. Factors associated with having a best friend and friendship quality were explored.ResultsA large majority (92.4%) had friends but just over half (52%) had a best friend. Co‐resident friends (71.8%) were more common than non‐resident friends (62%), while staff friendships (62.5%) were important. The majority of best friends were peers with intellectual disability (63.2%), carer/service providers (15.9%) or family (8.4%). Challenging behaviour and communication difficulty were associated with reduced likelihood of having a best friend. A best friend with intellectual disability was associated with lower friendship quality scores.ConclusionLimited choice and social opportunity may result in a precarious form of friendship for older people with intellectual disability that undermines their quality of life.

AbstractBackgroundAdults with an intellectual disability (ID) have much lower rates of employment than their counterparts without intellectual disability, which increases their risk of poverty and social exclusion. Differential treatment of people with intellectual disability in welfare and training policies suggests an expectation they will be passive welfare recipients rather than productive employees.MethodsThis paper aims to examine occupational activities by older people with intellectual disability in Ireland, exploring factors influencing outcomes using data from the IDS‐TILDA study (n = 708).ResultsMost people were unemployed but engaged in regular occupational activity. Occupational activity was associated with better emotional/mental health. Activities of Daily Living (ADL) functioning was associated with an active occupational status, while social supports most strongly predicted high occupational engagement across a range of activities.ConclusionsA focus on the individual meaning derived from a broad range of engagement may better support people with intellectual disabilities to benefit from regular occupational activity.

BackgroundChanging family sociodemographic factors, increased life expectancy for people with an intellectual disability, deinstitutionalization and policy prioritization of the family as the principal care provider, presents new challenges to care sustainability.MethodA qualitative study design was employed, entailing focus groups and semistructured interviews, with purposive sampling via the parent study population of the Intellectual Disability Supplement to The Irish Longitudinal Database on Ageing.ResultsThe traditional sociodemographic facilitators of family caregiving are in rapid decline. Families perceived limited support from services and limited future care options. Few future care plans have been formulated. A strong possibility exists of placement of older family members with an intellectual disability in out‐of‐family home care.ConclusionTo anticipate and provide for quality care supports, there is a need to establish proactive initiatives, for both people with an intellectual disability and their families', to facilitate the early formation of long‐term care plans.

BackgroundPeople with intellectual disability tend to have smaller social networks than other groups, with even those living in community‐based residences comparatively worse off.Materials and methodsAnalysis of data from the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS‐TILDA) (n = 701) examined measures of interpersonal relationships and interactions. Predictors of family contact and having non‐resident friends were also explored.ResultsSocial networks of older people with intellectual disability differ considerably from the general older population, with a reliance on support staff and co‐resident friends in place of their own immediate family structures and wider friendships. Proximity to family most strongly predicted family contact. Residence in independent or family residences was most strongly linked to having non‐resident friends.ConclusionsWhile family proximity and community living are associated with improved social networks and contacts, older people with intellectual disability remain worse off than the general older population.

AbstractPeople with an intellectual disability (ID) are more likely to experience mental health difficulties than others. The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) states that health services should be provided close to people's own communities. This article examines differences in access to psychiatry services for those with an ID according to geography, in the context of a small European country (Republic of Ireland). The sample consisted of 753 individuals aged 40 and over with ID in the Republic of Ireland, with data collected from the Intellectual Disability Supplement of the Irish Longitudinal Study on Aging (IDS‐TILDA). The primary outcome of interest was attendance with any psychiatrist and the primary independent variables were area of residence (health service region and degree of county urbanicity). Logistic regression was used to analyze associations, unadjusted and then controlling for age group, gender and level of ID. Secondary analysis examined factors associated with anti‐psychotic prescription without psychiatrist supervision. Treatment by a psychiatrist was associated with both health region (p = 0.029) and degree of urbanicity (p = 0.015) before controlling for group differences but only the health region was significantly associated after controlling for age, gender and level of ID. Antipsychotic use without a psychiatrist was associated with degree of urbanicity (p = 0.036) but not with health service region (p = 0.989). Geographic factors are associated with access to mental health services among those with ID in the Republic of Ireland. This may be partly due to movement of people with ID away from their area of origin, highlighting the need for locally tailored specialist ID mental health teams and for further research into barriers to treatment. Additional work in other countries will further understanding of similar roles of geographic factors in mediating mental health services access.

BackgroundHistorically, there has been higher and earlier mortality among people with intellectual disability as compared to the general population, but there have also been methodological problems and differences in the available studies.MethodData were drawn from the 2012 National Intellectual Disability Database and the Census in Ireland. A standardized mortality ratio (SMR) was calculated, as well as average age at death. Ratios and differences were further examined for the influence of age, gender and level of intellectual disability.ResultsMortality in persons with intellectual disability was four times higher and they were, on average, dying 19 years earlier than peers in the general population. Women with intellectual disability were living longer than males with intellectual disability, but differences in survival as compared to the general population were greater for these women. There was little change in average age at death over 10 years, and death was earlier the more severe the level of intellectual disability.DiscussionThe use of mortality ratios rather than average age at death alone is recommended, as well as greater standardization in use of data sets including the whole population, given high levels of earlier deaths in people with intellectual disability.

BackgroundThe literature on influences of community versus congregated settings raises questions about how social inclusion can be optimised for people with intellectual disability. This study examines social contacts for older people with intellectual disability in Ireland, examining differences in social connection for adults with intellectual disability and other adults.Materials & MethodsData were drawn from the IDS‐TILDA study in Ireland. A nationally representative sample (n = 753) included adults aged 40 years and older, with additional comparison with general population participants. Predictors of social contacts were explored.ResultsResidence, level of intellectual disability and age were significant factors determining social contact. People in institutional residences, older respondents and those with severe/profound intellectual disability had the lowest levels of contact; older adults with intellectual disability had much lower rates than general population counterparts.ConclusionsCommunity‐dwelling people with intellectual disability have greater social contact than those living in institutions, but levels are below those for other adults in Ireland.

AbstractBackgroundTransport is an important basis for social participation. Challenges to accessing and using transport for people with intellectual disabilities increase their risk of exclusion and loneliness.MethodData from a nationally representative study of older people with intellectual disabilities (n = 708) were used to examine longitudinal changes in transport usage and factors associated with using public transport and other travel options.ResultsFindings confirmed that this population depends on others for transportation. The most frequently used mode, staff‐supported transport, showed no significant longitudinal change. Public transport was secondary, with only moderate continued use between data collection points. Level of intellectual disability most strongly predicted public transport use, while community residence most strongly predicted using public transport to attend work or day programmes.ConclusionsTransport usage is associated with demand and supply factors linked to the person's environment, including having somewhere to go that requires transport and availability of transport options.

AbstractGenerally, staff working in settings that provide care for adults with intellectual disabilities (ID) have not received specific education with respect to extended care for terminal illnesses or late‐stage dementia. Equally, staff working in specialist palliative care often are not familiar with the unique issues of supporting persons with intellectual disabilities affected by dementia. To understand care concerns with respect to supporting persons with ID and advanced dementia, and to develop, deliver, and evaluate an educational intervention with staff in ID settings and specialist palliative care services, 14 focus group interviews were conducted with staff across six ID services and one specialist palliative care provider in the greater Dublin (Ireland) area. Qualitative descriptive analysis resulted in the emergence of key themes and formed the development of an educational intervention. Pre‐ and posttest questionnaires assessed responses to a pilot delivery of the educational intervention. Formal feedback from staff indicated that the educational intervention was highly valued and addressed key training concerns. They agreed that the training supported "aging in place," and the preparation for a "good death" including support for staff, peers, and family in their grief and bereavement. An educational intervention in the form of a trainer manual was produced to support cross‐service system in‐service training on issues of addressing advanced dementia in persons with ID.