Does supported living work for people with severe intellectual disabilities?

2015 ◽  
Vol 9 (6) ◽  
pp. 338-351 ◽  
Author(s):  
Elizabeth Marlow ◽  
Nina Walker
Keyword(s):  
Quality Of Life ◽  
Intellectual Disabilities ◽  
Family Members ◽  
Model Of Care ◽  
Content Type ◽  
Supported Living ◽  
Working Practices ◽  
Severe Intellectual Disabilities ◽  
The Impact

Purpose – The purpose of this paper is to look at whether a move to a supported living model of care from traditional residential group homes could improve the quality of life for those with a severe intellectual disability and other challenging needs. Design/methodology/approach – Six men with severe intellectual disabilities moved from two residential homes into new-build individual flats. Their quality of life was measured using a battery of assessments looking at; environment, relationships, community participation, interactions, mood interest and pleasure, activities, physical health and challenging behaviour. These measures were taken before the move, immediately after and six months after the move. The views of staff and family carers were also assessed at each stage. Findings – The move had a positive effect on the tenants in that it caused an improvement in their mood and a decrease in their challenging behaviours. Further improvements could be made in the tenant’s quality of life by introducing more activities. The initial concerns of family members about the move decreased over time. However staff found the changes to their working practices stressful. Research limitations/implications – The study was a small scale one because of the small number of tenants. The tenants were unable to express their own views because of their limited communication abilities so a combination of direct observation and indirect measures were used. Practical implications – In the light of the Winterbourne view report by Stephen Bubb this study looks at the impact on quality of life of a move to supported living for a group of people with complex and challenging needs who might otherwise be placed in an out of borough placement similar to Winterbourne view. Social implications – The study also looks at the impact of such a move on the family members of the individuals and on the staff who had to change their working practices to adapt to both a new working environment and model of care. Originality/value – This study also looks at the impact of a model of supported living for people with severe intellectual disabilities and complex needs rather than those with mild intellectual disabilities. This is particularly important in the post Winterbourne view climate when the authors need to look carefully at positive alternative models of care for these individuals.

Commentary on: the informal culture of a direct care staff team supporting people with intellectual disabilities who present with behaviours that challenge

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Julie Beadle-Brown
Keyword(s):  
Quality Of Life ◽  
Intellectual Disabilities ◽  
Direct Care ◽  
Care Staff ◽  
Life Outcomes ◽  
Content Type ◽  
Severity Of Disability ◽  
People With Intellectual Disabilities ◽  
The Impact

Purpose The purpose of this paper is to provide a commentary on Banks et al., and sets the wider context. Design/methodology/approach It provides a brief narrative review of the literature on the factors that determine the quality of life of people with intellectual disabilities, including the impact of culture. Findings Key to ensuring good quality of life outcomes is support that is facilitative, enabling and empowering which can compensate for severity of disability and improve people’s experiences. This approach is called Active Support. Improving quality of life is a key part of preventing and responding to behaviours that challenge. Culture is an important factor in ensuring staff are motivated to work in such ways but is likely to be intertwined with many other factors. Originality/value This paper summarises the key literature on what is needed to improve outcomes for people with intellectual disabilities. It introduces the importance of exploring how the different dimensions of culture interact and how culture, practice, processes and structures might work in a much more complex and intertwined fashion than previously conceptualised.

scholarly journals Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
R. Shah ◽  
F. M. Ali ◽  
A. Y. Finlay ◽  
M. S. Salek
Keyword(s):  
Quality Of Life ◽  
Family Members ◽  
Unmet Need ◽  
Reliability And Validity ◽  
Chronic Health Condition ◽  
Family Quality Of Life ◽  
Good Reliability ◽  
Huge Impact ◽  
The Impact

Abstract Background A person’s chronic health condition or disability can have a huge impact on the quality of life (QoL) of the whole family, but this important impact is often ignored. This literature review aims to understand the impact of patients' disease on family members across all medical specialities, and appraise existing generic and disease-specific family quality of life (QoL) measures. Methods The databases Medline, EMBASE, CINHAL, ASSIA, PsycINFO and Scopus were searched for original articles in English measuring the impact of health conditions on patients' family members/partner using a valid instrument. Results Of 114 articles screened, 86 met the inclusion criteria. They explored the impact of a relative's disease on 14,661 family members, mostly 'parents' or 'mothers', using 50 different instruments across 18 specialities including neurology, oncology and dermatology, in 33 countries including the USA, China and Australia. These studies revealed a huge impact of patients' illness on family members. An appraisal of family QoL instruments identified 48 instruments, 42 disease/speciality specific and six generic measures. Five of the six generics are aimed at carers of children, people with disability or restricted to chronic disease. The only generic instrument that measures the impact of any condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good reliability and validity, only 11 reported responsiveness and only one reported the minimal clinically important difference. Conclusions Family members' QoL is greatly impacted by a relative's condition. To support family members, there is a need for a generic tool that offers flexibility and brevity for use in clinical settings across all areas of medicine. FROM-16 could be the tool of choice, provided its robustness is demonstrated with further validation of its psychometric properties.

Impact of AI regulation on intention to use robots

2019 ◽  
Vol 8 (2) ◽  
pp. 97-114
Author(s):  
Sheshadri Chatterjee
Keyword(s):  
Quality Of Life ◽  
Artificial Intelligence ◽  
Design Methodology ◽  
Regulatory Control ◽  
Control Beliefs ◽  
Intention To Use ◽  
Content Type ◽  
And Control ◽  
The Impact

Purpose The purpose of this paper is to identify the factors influencing the citizens to use robots that would improve the quality of life of the citizens. Design/methodology/approach With the help of different adoption theories and models and with the support of background studies, some hypotheses have been formulated and a conceptual model has been developed with the consideration of the impact of artificial intelligence regulation (IAR) that controls the use of robots as a moderator. The model has been validated and the hypotheses have been tested by statistical analysis with the help of survey works involving consideration of feedbacks from 503 usable respondents. Findings The study reveals that the use of robots by the citizens would appreciably increase if government imposes strict artificial intelligence (AI) regulatory control concerning the use of robots, and in that case, it appears that the use of robots would improve the quality of life of the citizens. Research limitations/implications The duly validated model would help the authority to appropriately nurse and nurture the factors such as ethical dilemma, perceived risks and control beliefs for enhancing the intention of the citizens to use robots for many purposes including domestic usage in the context of appropriate restrictions imposed through AI regulation. Such use of robots would eventually improve the quality of life. Originality/value There are a few studies covering analysis of IAR as a moderator on the linkages of the predictors with the intention of the citizens to use robots. In this context, this study is claimed to have offered a novel contribution.

Outcome after complex neurosurgery: the caregiver's burden is forgotten

1999 ◽  
Vol 91 (3) ◽  
pp. 359-363 ◽  
Author(s):  
Dorothy A. Lang ◽  
Glenn Neil-Dwyer ◽  
John Garfield
Keyword(s):  
Quality Of Life ◽  
Major Change ◽  
Percutaneous Gastrostomy ◽  
Content Type ◽  
Petroclival Meningioma ◽  
Sf 36 ◽  
Permanent Neurological Deficit ◽  
The Impact ◽  
Fine Print

Object. The goals of this study were twofold: 1) to determine outcome, including quality of life, in patients who have undergone surgery for petroclival meningioma in which a standard skull base approach was used; and 2) to assess the impact of the patients' surgical treatment on their caregivers.Methods. Seventeen patients (13 women and four men ranging in age from 29 to 63 years) who underwent a transpetrosal approach for a petroclival meningioma during a 5-year period were prospectively included in this study. Pre- and postoperative data including adverse events were noted. The patients were assessed at 3, 6, and 12 months postoperatively, and annually thereafter, and they completed a postoperative SF-36 questionnaire. In addition, each patient's caregiver was interviewed to determine the effect of the patient's illness on the caregiver's life and responsibilities.Twenty-two operations were performed. A new permanent neurological deficit developed in five patients and in eight a temporary deficit or exacerbation of existing deficits occurred. Two patients underwent surgery to create a facial—hypoglossal nerve communication; five required a temporary percutaneous gastrostomy and/or tracheostomy; three required a shunt; and one underwent successful squint surgery. At 1 year postoperatively 13 patients had made a good or moderate recovery, three were severely disabled, and one had died—outcomes in keeping with other studies. By contrast, responses to the SF-36 questionnaire showed that, in all eight of its categories, between 43% and 75% of surviving patients were functioning below accepted norms. Fifty-six percent of caregivers experienced a major change in lifestyle and 38% experienced a major change with respect to their work.Conclusions. After transpetrosal excision of a petroclival meningioma, the quality of life for the patient is worse than that indicated in surgeons' reported results. The impact on the patient's caregiver is profound—a burden perhaps not fully appreciated by the surgeon.

scholarly journals Commentary on “Thinking differently? Autism and quality of life”

2019 ◽  
Vol 24 (2) ◽  
pp. 77-81 ◽  
Author(s):  
Krysia Emily Waldock
Keyword(s):  
Quality Of Life ◽  
Learning Disability ◽  
Participatory Research ◽  
Design Methodology ◽  
Life Experience ◽  
Content Type ◽  
Autistic People ◽  
Thinking Differently ◽  
The Impact

Purpose The purpose of this paper is to describe the possible impact of normalisation on the perceptions of quality of life (QoL) and the impact of this association on the research to date. This commentary reflects on the implications of limiting QoL research to autistic people who are perceived to be “more able”. Design/methodology/approach This commentary discusses the implications of undertaking QoL research in the field of autism. Findings This commentary argues for further consideration of the autistic voice in QoL research. Researcher epistemology and life experience, including experience of autistic people, is examined in terms of how QoL might be perceived and attributed. Further participatory research in the field of quality of life of autistic people, including those with a learning disability and engagement with a variety of autistic people, is called for. Originality/value This commentary suggests that the existing definitions of QoL, founded on principles of normalisation, may not be completely applicable to autistic people, and that new ways of both defining and measuring QoL might be needed.

scholarly journals Mobile Midwesterners: The Impact of Migration on Aging, Health, and Community

2013 ◽  
Vol 34 (1) ◽  
pp. 6-17 ◽  
Author(s):  
Matthew Dalstrom
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Access To Health Care ◽  
Family Members ◽  
Seasonal Migration ◽  
Retirement Communities ◽  
Health Seeking ◽  
Health Seeking Behaviors ◽  
The Impact

As the population in the US ages, there is increasing need to study aging and its relationship to quality of life, health, and community. Quality of life is closely correlated with belonging to a community. Unfortunately, as seniors age there is a propensity for them to become increasingly isolated as their mobility decreases and their friends and family members die or move away. As a result, some seniors in the Midwest have begun to migrate to RV parks in the Lower Rio Grande Valley (“LRGV”) in south Texas that function as temporary retirement communities for the winter. While there, they reconnect with friends and family members and engage in a variety of social, civic, and exercise related activities. Further, they participate in a variety of health seeking behaviors such as health screenings, trading medications, and using the Mexican health care system. This article explores these practices and discusses how Winter Texans choose the LRGV, how new members become integrated into RV parks, and how life in the parks impacts health and access to health care services. It also highlights the impact that seasonal migration has on community formation, health seeking behaviors, and the diversity of retirement communities.

scholarly journals Culinary travel experiences, quality of life and loyalty

2020 ◽  
Vol 24 (3) ◽  
pp. 425-446
Author(s):  
José Manuel Hernández-Mogollón ◽  
Elide Di-Clemente ◽  
Ana María Campón-Cerro
Keyword(s):  
Quality Of Life ◽  
Structural Equation ◽  
Specific Kind ◽  
Content Type ◽  
Tourist Destinations ◽  
Tourist Satisfaction ◽  
The Impact ◽  
Determining Factor ◽  
Practical Implications

Purpose This paper aims to develop an original model in the context of food-based experiences considering new experiential variables, such as to experience quality, memorability and quality of life (QOL), and their impact on marketing outcomes, namely, satisfaction and loyalty, approached from an experience perspective. Design/methodology/approach An empirical approach has been adopted. Data have been collected through an online and a paper-and-pencil method, using an original questionnaire addressed to tourists who had a food-based experience during their recent holidays. Partial least squares-structural equation modelling is the technique used for data analysis. Findings The results confirm that local food, enjoyed through quality experiences, is a determining factor in designing memorable products, achieving tourist satisfaction, improving their QOL and encouraging loyalty to experiential food-based practices. Research limitations Results should be interpreted within the context of this research because of the use of a sample conveniently selected. Practical implications Gastronomic experiences represent a successful strategic resource for tourist destinations and professionals who want to adapt their business/destination to the new requirements of the experiential context. Originality/value To the best of authors’ knowledge, this study is first to relate the impact of memorable and quality culinary experiences on the QOL of tourists, chasing, as a final result, loyal intentions towards a specific kind of experience (culinary) rather than towards the destination.

scholarly journals Impact of the COVID-19 Pandemic on Mental Health and Quality of Life among Local Residents in Liaoning Province, China: A Cross-Sectional Study

2020 ◽  
Vol 17 (7) ◽  
pp. 2381 ◽  
Author(s):  
Yingfei Zhang ◽  
Zheng Feei Ma
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Family Members ◽  
Lifestyle Changes ◽  
Liaoning Province ◽  
Event Scale ◽  
Validated Questionnaire ◽  
The Mean ◽  
The Impact

Our study aimed to investigate the immediate impact of the COVID-19 pandemic on mental health and quality of life among local Chinese residents aged ≥18 years in Liaoning Province, mainland China. An online survey was distributed through a social media platform between January and February 2020. Participants completed a modified validated questionnaire that assessed the Impact of Event Scale (IES), indicators of negative mental health impacts, social and family support, and mental health-related lifestyle changes. A total of 263 participants (106 males and 157 females) completed the study. The mean age of the participants was 37.7 ± 14.0 years, and 74.9% had a high level of education. The mean IES score in the participants was 13.6 ± 7.7, reflecting a mild stressful impact. Only 7.6% of participants had an IES score ≥26. The majority of participants (53.3%) did not feel helpless due to the pandemic. On the other hand, 52.1% of participants felt horrified and apprehensive due to the pandemic. Additionally, the majority of participants (57.8–77.9%) received increased support from friends and family members, increased shared feeling and caring with family members and others. In conclusion, the COVID-19 pandemic was associated with mild stressful impact in our sample, even though the COVID-19 pandemic is still ongoing. These findings would need to be verified in larger population studies.

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