The role of informal networks in providing effective work opportunities for people with an intellectual disability

Being in paid employment is socially valued, and is linked to health, financial security and time use. Issues arising from a lack of occupational choice and control, and from diminished role partnerships are particularly problematic in the lives of people with an intellectual disability. Informal support networks are shown to influence work opportunities for people without disabilities, but their impact on the work experiences of people with disability has not been thoroughly explored. The experience of 'work' and preparation for work was explored with a group of four people with an intellectual disability (the participants) and the key members of their informal support networks (network members) in New South Wales, Australia. Network members and participants were interviewed and participant observations of work and other activities were undertaken. Data analysis included open, conceptual and thematic coding. Data analysis software assisted in managing the large datasets across multiple team members. The insight and actions of network members created and sustained the employment and support opportunities that effectively matched the needs and interests of the participants. Recommendations for future research are outlined.

Stress and burnout amongst professional carers of people with intellectual disability : another health inequity

Purpose of review This paper summarizes trends in the research literature about stress and burnout in the lives of people who are the professional carers of people with intellectual disability. The principal time period considered was from 2004 to 2006. Recent findings Studies reviewed here focus on several themes including inequities affecting professional carers of people with intellectual disability and the possible effects of some models of care on inequities. Implications for people with intellectual disability are also considered. Summary The diaspora of people with intellectual disability into the community and their accompanying services found a whole new set of unpredicted and unprecedented challenges. Life in the community has rendered professional carers of people with intellectual disability more clearly vulnerable to stress and burnout for a variety of complex reasons, some identified and others as yet unrecognized. Lack of support and lack of role definition are particular problems. Presence of physical and mental health inequities result in major disparities in community care for people with intellectual disability.

The effectiveness of communication interventions in providing older people with information on access to in-home health and social care services: A systematic review protocol

The objective of this review is to locate, critically appraise and synthesize evidence on the effectiveness of communication strategies for providing older people access to information regarding in-home health and social care services. The review question is: What is the effectiveness of communication interventions in providing older people with information about in-home health and social care services?

A journey access tool to facilitate better health outcomes for people with disabilities

- Background One of the three objectives of the WHO Global Disability Action Plan 2014–2021 is removal of barriers and improved access to health services and programmes. Access to transport contributes to positive health outcomes; however, people with disabilities leaving their dwellings are confronted with barriers to their mobility. Mobility restrictions, sensory or other disabilities increase their vulnerability as road users, exposing them to higher risks of injury. PHSW and CARRS-Q have been collaborating with Handicap International Cambodia (HIC) on a Journey Access Tool (JAT). - Aims Use of the JAT is to (1) Identify transport and journey safety and barriers for people with disability and (2) Evaluation and modification of the tool after trailing to for use by NGOs and government agencies in prioritising actions around barriers. - Methodology The tool has undergone initial proof-of-concept testing in India and Viet Nam, and was trialled in Cambodia in February and May, 2015. Five teams were formed comprising a person with disability (physical, sensory or intellectual), researchers from QUT, staff from HIC, and local university students. The JAT was completed by each team and then discussed and evaluated. Two further Cambodian trials are scheduled for 2015. - Results The JAT is responsive to rural and urban contexts, and has utility for people with different disabilities. Two tools have been developed: a short version for people with a disability to complete independently, or with assistance; and a version for NGOs, DPOs and government. The tool has efficacy for advocacy.   - Conclusion The JAT has potential to assist the Mekong region with: (1) evaluating access for people with disability and other vulnerable members of the community including older people; (2) developing plans for changes to the routes in consultation with local authorities; (3) evaluating the effectiveness of implemented changes in terms of access and health; (4) inputting into policy; (5) The tool can be used for advocacy for change.

Youth with intellectual disabilities and the right to make choices : investigating the family context to inform a training program

People with intellectual disabilities (ID) are more likely to be victims of abuse and human rights violations than people without ID. The 3Rs: Rights, Respect, and Responsibility project has developed and is testing a human rights training program for adults with ID. The current project was conducted to make recommendations to adapt the 3Rs rights training program to be used with youth with ID and their families. An interpretive phenomenological framework was employed to investigate youth with ID, parents', and siblings' perceptions of the i r experiences with choice making, an enactment of rights, in the family context. Thematic analysis of interviews revealed that, consistent with previous research, family members consider family values, conventions, and family members' well being when making decisions. A training program should promote a consideration of expanded opportunities for youth with ID to make choices and should be flexible to address individual families' cultures, needs, and desires.

Mental retardation : plans for the future : public awareness, prevention, family and community service, systems simplification, full citizenship, international activities.

"15th annual report of the President's Committee on Mental Retardation."--T.P. verso.

Child welfare and juvenile justice : federal agencies could play a stronger role in helping states reduce the number of children placed solely to obtain mental health services : report to congressional requesters /

"GAO-03-397."

The Illinois state plans, fiscal year ... for the construction of facilities for the mentally retarded (Title I-C) and community mental health centers (Title II) Public Law 88-164.

Title varies slightly.

Nurses’ perceptions of nursing presence and the relationship between nursing presence and moral sensitivity in nurses working with people with dementia in residential care

Aim: The aim of this study was to measure nursing presence among nurses caring for people with dementia in residential care settings, and to investigate the relationship between nursing presence and moral sensitivity. Background: Nursing presence is a core relational skill in nursing and holds many benefits for nurses and their patients. Moral sensitivity is defined as how one recognises the moral elements of a situation, and how one’s moral or ethical decision making may impact on an individual. Methods: A descriptive, cross sectional quantitative methodology was used with a sample of 150 registered nurses. The Presence of Nursing Scale for Registered Nurses was used to investigate nursing presence, and the Moral Sensitivity Questionnaire for moral sensitivity. Results: Findings from the study demonstrated that participants agreed with the majority of elements of nursing presence, (mean 76.97, SD= 7.51). A mean score of 36.22 was evidence of a well developed level of moral sensitivity in participants. Nurses who perceived themselves to be highly present to their patients also scored highest on certain elements of moral sensitivity such as moral strength. Nursing presence was also found to be more developed in those participants that rated themselves as having higher levels of expertise based on Benner’s (1984) definitions. Older nurses also scored higher on nursing presence. There was a high level of agreement that factors such as lack of time (n=133), and heavy workload influenced nursing presence. Nurses, who were older and had longer clinical experience, were shown to have greater moral strength. There were differences in elements of moral sensitivity between groups of nurses who ranked themselves according to Benner’s (1984) competence framework with higher scores evident in the more expert groups. Conclusion: Overall, this study showed that participants had a well developed level of nursing presence, and certain elements of moral sensitivity are positively related to nursing presence. Nursing presence appears to be linked to the level of expertise of the nurse but factors such as time and workload do influence nursing presence.

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

Challenges to improve inter-professional care and service collaboration for people living with psychiatric disabilities in ordinary housing

The aim of this study was to describe health care- and social service professionals' experiences of a quality-improvement program implemented in the south of Sweden. The focus of the program was to develop inter-professional collaboration to improve care and service to people with psychiatric disabilities in ordinary housing. Focus group interviews and a thematic analysis were used. The result was captured as themes along steps in process. (I) Entering the quality-improvement program: Lack of information about the program, The challenge of getting started, and Approaching the resources reluctantly. (II) Doing the practice-based improvement work: Facing unprepared workplaces, and Doing twice the work. (III) Looking backevaluation over 1 year: Balancing theoretical knowledge with practical training, and Considering profound knowledge as an integral part of work. The improvement process in clinical practice was found to be both time and energy consuming, yet worth the effort. The findings also indicate that collaboration across organizational boundaries was broadened, and the care and service delivery were improved.

“I want to see the Queen” : experiences of service use by ageing people with an intellectual disability

People with intellectual disability are a relatively new but growing minority group within Australia's ageing population. Disability policies point to the equal right of people with disabilities to a quality of life similar to that of other citizens. Disability services are increasingly required to provide individualised and responsive services, irrespective of age, for people with lifelong disabilities. The present study explored the everyday lives of older people with intellectual disability in Victoria and Queensland, examining their experiences of using disability services and the ways in which services responded to their ageing. The aim of the study was to inform practice and service development for older people with intellectual disability. The findings suggest that services facilitate important social relationships with other service users and staff. Most older people had a sense of belonging and led busy but directionless lives in two disconnected worlds. Their lives were subject to significant external present-focused control. Yet, despite this, neither services nor family members took responsibility for ensuring their sense of continuity or supporting the development of plans about their future. The experiences described suggest an urgent need for, but significant challenges in the implementation of, holistic indivdualised planning similar to the UK concept of person-centred planning.

Foot massage versus quiet presence on agitation and mood in people with dementia : a randomised controlled trial

Background There is increasing interest in using complementary and alternative treatments to manage behavioural and psychological symptoms of dementia such as agitation, aggression and depressed mood. Objective To compare the effect of foot massage (intervention) and quiet presence (control) on agitation and mood in people with dementia. Design A randomised controlled trial using a within-subjects, crossover design. Settings Five long-term care facilities in Brisbane, Australia. The primary outcome was the Cohen-Mansfield Agitation Inventory (CMAI) and the secondary outcome was the Observed Emotion Rating Scale (OERS). The screening and data collection research assistants, families, and care staff were blinded to participant allocation. Participants Participants of the study were 55 long-term care residents aged 74–103 years (mean age 86.5), with moderate to severe dementia and a history of agitated behaviour according to the Pittsburgh Agitation Scale. A computer-program randomised participants to 10-min foot massage (intervention) or quiet presence (control), every weekday for 3 weeks. Results A carry-over effect was identified in the data, and so the data was treated as a parallel groups RCT. The mean total CMAI increased in both groups (reflecting an increase in agitation) with this increase greater in the quiet presence group than the foot massage group (p=0.03). There was a trend towards a difference on OERS General Alertness, with a positive change in alertness for participants in the foot massage group (indicating reduced alertness) and a negative change for participants in the quiet presence group (indicating increased alertness) (F(1,51)=3.88, p=0.05, partial ή2=0.07). Conclusions The findings highlight the need for further research on the specific conditions under which massage might promote relaxation and improve mood for people with dementia. The unfamiliar research assistants and variations in usual activity may have contributed to the increase in agitation and this needs further research.

Vulnerability to loneliness in people with intellectual disability: an explanatory model

Research with typically developing groups has identified loneliness as a significant predictor of a range of physical and mental health problems. This paper reviews research about loneliness in children and adults with intellectual disability. Although a considerable body of evidence has highlighted the difficulties individuals with intellectual disability have with friendships, there is a relative scarcity of research focused explicitly on loneliness. The available evidence suggests that up to half of those with intellectual disability are chronically lonely, compared with around 15-30% of people in the general population. The cognitive, physical and mental health problems already associated with intellectual disability are likely to be compounded by experiences of chronic loneliness. We argue that people with intellectual disability are highly vulnerable to loneliness and present a theoretical model of vulnerability that comprises three reciprocally influencing domains: social attitudes and expectations; opportunities and experiences; and skill deficits associated with intellectual disability. We propose that societal views which have traditionally devalued and stigmatised those with intellectual disability limit their opportunities for experiencing social and emotional connectedness with others. Individual skill deficits in areas such as communication, self-regulation and social understanding, as well as functional difficulties associated with intellectual disability, also potentially influence the opportunities and experiences of people with intellectual disability, both directly and via multiple layers of the social context. In turn, limited opportunities will entrench particular skill deficits and reinforce negative attitudes towards intellectual disability. Future research about loneliness and intellectual disability needs to address the difficulties of measuring emotional isolation in this population, as well as the possibility that people with intellectual disability may understand, experience and interpret loneliness somewhat differently from others. The model proposed in this paper provides a starting point for developing a more sophisticated understanding of the experience of loneliness for individuals with intellectual disability.