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Nurses' attitudes and emotions toward caring for adults with intellectual disabilities: results of a cross‐sectional, correlational‐predictive research study
- Authors:
- DESROCHES Melissa L., et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 32(6), 2019, pp.1501-1513.
- Publisher:
- Wiley
Background: Negative healthcare provider attitudes may contribute to healthcare disparities in adults with intellectual disabilities. This study identified predictors of nurses' attitudes and emotions toward caring for adults with intellectual disabilities in the United States. Method: A convenience sample of 248 nurses was used to collect nurses' attitudes and emotions toward caring for adults with intellectual disabilities (Adapted Caring for Adults with Disabilities Questionnaire) and quality of life beliefs (Prognostic Beliefs Scale). Results: Overall, nurses held less positive attitudes toward caring for an adult with intellectual disability versus a physical disability. Intellectual disability nurses held more positive attitudes and emotions and less negative emotions than non‐intellectual disability nurses. Quality of life beliefs predicted nurse attitude, positive emotions and negative emotions. The number of adults with intellectual disabilities cared for during the nurse's career predicted negative emotions. Conclusions: Future interventions should focus on improving nurses' understanding of the quality of life of adults with intellectual disabilities. (Publisher abstract)
Self- and caregiver-reported experiences of young adults with developmental disabilities
- Authors:
- ROUSH Susan E., et al
- Journal article citation:
- Journal of Social Work in Disability and Rehabilitation, 6(4), 2007, pp.53-73.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Six males and ten females (mean age 24) with developmental disabilities were interviewed, and the narrative data analysed to reveal six themes: home life; relationships; health and health care; personal growth and accomplishments; occupation; and transportation. The subjects’ most positive experiences were associated with integrated, timely and comprehensive services delivered by knowledgeable and sensitive service providers. Strong parental advocacy was important in this context. Experiences were also most positive when daily activities occurred within the sphere of either the family or the disability community, as opposed to the broader community. The authors conclude that further research is needed into the issues surrounding the transition to adulthood for young people with developmental disabilities. (Copies of this article are available from: Haworth Document Delivery Centre, Haworth Press Inc., 10 Alice Street, Binghamton, NY 13904-1580).
Improving quality of life and career attitudes of youth with disabilities
- Authors:
- WOLF-BRANIGIN Michael, SCHUYLER Vincent, WHITE Patience
- Journal article citation:
- Research on Social Work Practice, 17(3), May 2007, pp.324-333.
- Publisher:
- Sage
Improving quality of life is the primary focus as adolescents with disabilities enter adulthood. They increasingly, however, encounter difficulties transitioning into domains such as employment as these services occur near the end of their high school experience. Using an ecosystems model within a developmental approach, this American program sought to improve the likelihood that adolescents will find and maintain meaningful employment as adults. The authors measured physical health, psychosocial functioning, and attitude toward employment of adolescents participating in the program during a 2-year period. Physical health, school functioning, and total functioning improved during the 2 years. Career attitudes were above the norms in earlier grades but fell in later grades. This suggests the need for early and continued intervention.
Quality of life for young adults with severe intellectual disability: mothers' thoughts and reflections
- Authors:
- McINTYRE Laura Lee, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 29(2), June 2004, pp.131-146.
- Publisher:
- Taylor and Francis
Thirty mothers of transition-aged young adults (18-24 years) with severe intellectual disability were interviewed regarding their son or daughter's quality of life. All mothers completed the standardised Quality of Life Questionnaire and responded to several open-ended questions to further delineate quality of life for their child. Mothers were asked to describe quality of life for their young adult child and to evaluate their child's quality of life. Most mothers (73%) mentioned recreation, activities, and hobbies as important components of their young adult child's quality of life. Other common responses included having their son or daughter's basic needs met (53%), having their son or daughter belong to a social network (40%), and having their son or daughter be happy or content (37%). Less common responses included work (7%) for their son or daughter, communication capabilities (10%), health (13%), and consistency (17%) in their son or daughter's life. Mothers' visions for their sons and daughters, environmental and social supports for family members, and family quality of life issues are explored. Discussion focuses on contributions of this study to the burgeoning quality of life literature.
Is satisfaction a valid concept in the assessment of quality of life of people with intellectual disabilities? A review of the literature
- Author:
- HENSEL Elizabeth
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 14(4), 2001, pp.311-326.
- Publisher:
- Wiley
This review examines the definitions of quality of life (QoL) which have developed over the past 3 decades and which reflect the increased awareness of the need to take into account individuals' own perceptions of their life. The concept of satisfaction is frequently used as an important subjective variable in QoL studies, despite the evidence of stability of satisfaction over individuals and over time, which suggests that it should be a measure insensitive to change. This evidence is examined and the idea of such stability being an adaptive psychological mechanism is considered. The use of satisfaction as a measure of QoL in people with intellectual disabilities (IDs) is discussed. The methodological difficulties encountered in assessing the subjective experiences of people with IDs are also discussed. Finally, it is argued that there is a strong argument for the abandonment of measures of QoL in general, and subjective ones in particular, for people with IDs. An alternative approach is suggested.
Staff perceptions of the quality of life of individuals with an intellectual disability who transition from a residential campus to community living in Ireland: an exploratory study
- Authors:
- KILROY Sarah J., et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 40(1), 2015, pp.68-77.
- Publisher:
- Taylor and Francis
Background: This study explores the quality of life (QoL) of individuals with a severe intellectual disability (ID) who had recently moved from an institutional setting (i.e., “residential campus”) to independent housing in the community (i.e., “community living”) and whether aspects of their QoL were perceived to have changed over the course of this move. Method: A qualitative approach was adopted by interviewing the key workers of 8 individuals with an ID (M age = 37.38, range: 26–44, male n = 6, female n = 2). An interview tool focusing on aspects of QoL was utilised and the interviews were analysed using thematic analysis (Braun & Clarke, 2006). Results: Ten themes emerged from the analysis that provided insight into the experience of transitioning to community living. Conclusions: The emotional wellbeing, health, privacy, freedom, and material wellbeing of all the individuals were perceived to have improved, as well as independence, choice, and social opportunities for many. (Publisher abstract)
Psychotropic medications and adults with intellectual disabilities: care staff perspectives
- Author:
- LALOR John
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 7(6), 2013, pp.333-345.
- Publisher:
- Emerald
Adults with intellectual disabilities are the most psychotropically medicated population of all. Non-medically trained care staff with whom these individuals spend the majority of their time are generally poorly trained in issues surrounding psychotropic medication. Much of the research related to the experiences of staff working in intellectual disability services has focused on medically trained professionals, and clients, and has been of a quantitative nature. Very little attention has been paid to care staff, their experiences, and through a qualitative approach. In this study semi-structured interviews were used to explore the experiences of, and impact on, care staff in relation to psychotropic medication usage in adults with intellectual disabilities living in long-term residential care. Eight full-time, experienced care staff from service in Dublin were interviewed and data were analysed using interpretative phenomenological analysis. The paper demonstrates the concerns for staff, such as the negative impact upon client quality-of-life, the ethical implications of the medications’ regime, and the relationship perceived by care staff with the organisation management; and a significant lack of training. The limited field of previous research demographically comparable to the present paper was analysed for findings. (Edited publisher abstract)
Communication supports in residential services for people with an intellectual disability
- Authors:
- DALTON Caroline, SWEENEY John
- Journal article citation:
- British Journal of Learning Disabilities, 41(1), 2013, pp.22-30.
- Publisher:
- Wiley
This study explores front-line support staff knowledge and perceptions of how people with intellectual disability residing in residential services are supported to communicate effectively. It aimed to discover whether staff had the knowledge and skills to communicate effectively with service users and means by which front-line staff ensured the rights of service users to communicate were upheld. Participants (n = 138) drawn from a voluntary organisation in Southern Ireland completed a self-report questionnaire. Participants were made up of staff nurses, care staff and some nurse managers. Staff worked in large residential settings, group home settings, day community hostels, with the smallest number working in semi-independent settings. Support staff recognise that facilitating people with an intellectual disability to communicate is an important part of their role. Support staff indicate that when the importance of supporting communication is recognised and prioritised, it has a marked impact on the quality of life of people availing of residential services. However, front-line staff indicate that they do not always have the knowledge or resources to provide such supports. Lack of specialist support services such as speech and language therapists is identified as a constraint. It is suggested that an organization-wide commitment is required across front-line services to ensure that the right of people with an intellectual disability to communicate is upheld. (Edited publisher abstract)
Too far to go: out-of-area placements of people with intellectual disabilities
- Authors:
- BEADLE-BROWN Julie, et al
- Journal article citation:
- Tizard Learning Disability Review, 11(1), February 2006, pp.24-34.
- Publisher:
- Emerald
This mainly exploratory study was a one-point-in-time survey of the situation of one English county. The study involved a survey of all social care homes in the country, followed by measures of quality of life/service for a random sample of 30 people identified by the survey, interviews with home managers, service users, family carers and care managers, and focus groups with members of four community learning disability teams. The total number of people placed out-of-area was estimated to be close to 2,000 (1,500 were placed by the local authority within the country). The main reason for such placements was lack of good local services, but cost also seemed important. For many of those who had been in long-stay hospital, locality appeared not to be important. Effects varied, but at least a third of people were experiencing very poor service quality and quality of life. Family carers generally felt their relative was happy, but fear of loosing placement was a strong theme. For local community learning disability teams, the main problems included increased workload, reduced provision for local residents, difficulty in dealing with placing authority and the poor quality of the homes. Challenges for public agencies include provision of better local services, management of the cost incentives, especially for London Boroughs, and a system where funding follows the person wherever they chose to live.
Parental involvement in residential care and perceptions of their offspring's life satisfaction in residential facilities for adults with intellectual disability
- Author:
- SCHWARTZ Chaya
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 30(3), September 2005, pp.146-155.
- Publisher:
- Taylor and Francis
This study examined parental involvement in relocation and post-placement care of offspring in residential facilities for adults with intellectual disability in Israel, as well as the characteristics of residents, parents, and residential institutions and the effect of those variables on parental perceptions of their offspring's life satisfaction. Seventy-one adults who had moved from their family home to a community-based residence for people with intellectual disability completed the Parental Involvement Questionnaire and the parents' form of the Lifestyle Satisfaction Scale. Parents reported a high level of pre-placement involvement: selecting the current residence, visiting the prospective residence, and attending admissions committee meetings. High post-placement involvement was expressed by frequent visits to the residence and participation in social activities. Parents perceived themselves as being more involved in relocation than in post-placement care. Smaller facility size, attendance at admissions committee meetings, and full partnership in residential care were related to higher levels of perceived life satisfaction. The authors conclude that professional intervention during and after the process of relocation to a community residence can be an effective way of improving parental perceptions of their offspring's life satisfaction. From the parents' perspective, a smaller residence may ensure a better quality of life for their son or daughter.