People In Care Homes Research Articles

THE EFFECTS OF BUILT ENVIRONMENT DESIGN ON OPPORTUNITIES FOR WELLBEING IN CARE HOMES

The built environment influences the wellbeing of older people in care homes. In order to design for enablement, physical activity, and social connectivity there are lessons to be learnt from current care home buildings. Uncovering this design information is key for the future improvement of environments for older people. To the field of architecture, this paper presents an analysis of ethnographic observations (utilising an adapted form of the AEIOU heuristic) from five urban care homes in the UK. Findings provide insight into the qualities of the built environment that have impact on the activity and potential wellbeing of older residents. Five significant qualities of the built environment are identified: Spatial Legibility, Spatial Interconnectedness, Spatial Traversability, Spatial Diversity, and Spatial Aesthetics.

Nidotherapy compared with enhanced care programme approach training for adults with aggressive challenging behaviour and intellectual disability (NIDABID): cluster-randomised controlled trial.

Aggressive challenging behaviour is very common in care homes for people with intellectual disability, and better psychological treatments are needed. Nidotherapy aims to change the environment of people with mental illness and is an appropriate treatment for this group of disorders. The design was a cluster randomised trial of 20 care homes in which the staff either received training in nidotherapy or the enhanced care programme approach (ECPA), with equivalent duration of treatment in each arm. Cluster randomisation of care homes was carried out at the beginning of the study by an independent statistician. Primary and secondary outcomes were not specified exactly in view of absence of previous study data, but changes over time in scores on two scales, the Modified Overt Aggression Scale and the Problem Behaviour Check List were the main outcome measures. Serious violent incidents were recorded using the Quantification of Violence Scale. All these measures were recorded monthly by research assistants who were carefully kept blind to the allocation of treatment. A total of 200 residents entered the trial, 115 allocated to the ECPA arm and 85 to the nidotherapy one. Seven residents left the care homes in the course of the study, and six were replaced; these were included 79 in the analysis as the trial was a pragmatic one. There were no material reductions in challenging behaviour in the first 8 months of the trial in either group, but in the last 7 months, those allocated to nidotherapy had a 33% reduction in Modified Overt Aggression Scale (MOAS) scores and a 43% reduction in Problem Behaviour Check List scores compared with 5% and 13%, respectively, for the ECPA group, differences which for the MOAS were close to statistical significance. Nidotherapy shows promise in the management of aggressive challenging behaviour in care homes, but a delay in its benefit might be expected if given to staff only. The treatment is worthy of further evaluation and development.

Sporting memories, dementia care and training staff in care homes

PurposeThe purpose of this paper is to describe the findings from a pilot and a follow-on study in which care assistants in care homes were trained to use sporting memories work to better help and engage with residents with dementia and low mood. Care homes have to support increasingly more fragile people and often the range of activities in the homes do not offer the best engagement between residents and staff to benefit the residents. This is for reasons of time to run activities in a busy home, and because of the need to find financially viable means of running a range of activities. Care assistants in care homes are a group of non-professionally educated workers and are often overlooked for training beyond basic health and safety training to help them improve their work and the care they provide. This work sought to explore whether sporting memories work was viable as an activity to offer in care homes via the training of care assistants.Design/methodology/approachThe paper discusses the evidence from a pilot and then follow-on project in care homes in one city area. In the pilot observation was made of a training session and follow up interviews were undertaken with care home managers to see how the implementation of sporting memories was going. In the follow-on project the support to those undertaking the training was modified to include three learning network sessions. Data were collected on the experience of participants and their use of sporting memories work.FindingsThe findings were that care assistants could be trained in using sporting memories work and they often found it easy to use and fulfilling for them and people they cared for. This was despite the care assistants who participated often not having much interest in sports and little experience in this kind of work. However, practical barriers to maintaining the use of sporting memories work did remain.Research limitations/implicationsThe evidence to date is of case studies of training staff in care homes in the use of sporting memories work, which provides good grounding for proof of the concept and key issues, but further research is needed on the costs and impacts of sporting memories work in care homes. The lack of direct feedback about experiences of care home residents of sporting memories work and its impact on them is a further limitation.Practical implicationsSporting memories work is a flexible and readily adoptable intervention to engage older people in care homes and the evidence to date is that care assistants in care homes can be trained to use this approach to engaging older people. Practical challenges still remain to using sporting memories work in care homes, notably the issue of time for staff to do the work, but it is an approach for care homes to have available to them to match up to the interests of residents.Social implicationsSporting memories work can be an important part of meeting some of the challenges society faces with an ageing population profile and to enhancing the care home environment and care assistants can be trained to use the approach.Originality/valueThis is the first paper to discuss training care home staff in the use of sporting memories work.

Advanced mobile solution in a continuum of care process

Introduction: Osona is a Catalonian county with almost 157.000 inhabitants, of which 2.9% are 85 years old or over, and it behaves like a micro health and social system in the Catalan territory. The health providers and the local administrations who are responsible for community social services, have made a strategic alliance, that seek to create a more integrated and person-centred care of persons with complex health and social care needs, based government guidelines for Programs of Prevention and Care of Chronic Patients (PPAC) and Social and Health Interaction (PIAISS). The home care of people with dependence in Osona has integrated and a new care model based in interventions adapted to their needs has been developed. The Fundacio Assistencial d'Osona (FADO), that is a nonprofit foundation, is the responsible for the home care in the county, serving more than 750 people each year. Often people with complex health and social care needs require the intervention of multiple suppliers, therefore the challenge is to achieve shared care for this group and the accessibility to information is a key element for advancing. In order to have updated information from users, as well as the monitoring of personalized care plan, objectives and tasks involved, we designed a system of interconnected with the FADO central server through mobile network to enable remote control and the exchange of information, which automates and streamlines processes for data collection. The aim of the communication is to describe the follow-up model of the users through the mobile platform. The project has passed the trail period and will be implemented in April 2016. Development of the project: Some months ago we launched the new service ASSISCAT platform, a mobile application jointly developed with Vodafone that the FADO workforce would have access through their Smartphone in the home visits. By means of this application they would be able to consult the care plan for each user, the services they require (personal care and showers, support in daily activities, mobilizations...), record notes concerning their state, autonomy degree, and personal choices or manage any incident that should occur. This application will provide a higher quality service, greater security and continuity of care, in order to contribute in the improvement of their health and wellbeing. This application will also help the professionals to organize in a better way and keep a detailed control of their daily activity, from registering the arrival and departure time of each visit, validate the completion of scheduled tasks, consult the schedule for the next days and location through GPS the best route to reach the addresses. It also allows a secure messaging system. This application is based in a machine to machine connection system that links directly mobile devices to the FADO server, which allows you to connect directly with the patient electronic health record. So the information is always updated avoiding the conventional network ensuring as well data protection. Moreover each mobile device is provided with a card connected through roaming (global SIM), in order to increase the coverage level. The indicators for the evaluation of their impact are related to the care plan optimization, the improve of the experience and security of the patient and the service efficiency. Conclusions: We present an advanced mobile solution to ensure access to information and increase the safety of users. We also present results of efficiency improvements with the use of this technology.

Establishing a set of research priorities in care homes for older people in the UK: a modified Delphi consensus study with care home staff.

Backgroundcurrently, there is little evidence base for much of the care provided for older people in care homes. Given the wide range of topics that require further investigation, and limited resources, one solution is to identify the priorities for future research.Methodsa modified Delphi technique was used to identify research topics and develop consensus among care home staff participants. The survey was conducted across three rounds. Firstly to elicit topics that were considered by participants to require further research, secondly to prioritise the long list of research questions, followed by a third round to reach a consensus on the highest ranked 15 questions.Resultseighty-three participants responded to the initial survey, providing 144 questions. Following analysis and review against existing evidence, 76 research questions remained. Of note, 40/83 participants responded to the interim prioritisation round and 43/83 participants responded to the final round, which ranked the top 15 research questions by importance. Two other groups of health and social care professionals also participated in the final ranking. The results from these groups had a similar ordering to those of the original cohort of participants.Conclusionthis is the first study to establish a set of research priorities for older people in the UK care homes. It is hoped that sharing these results with clinicians, researchers and funding bodies will help to begin the process of ensuring that the future research agenda can be focused on the areas of greatest need. Further work to identify the priorities of other key stakeholders is required.

Realising dignity in care home practice: an action research project.

More than 400,000 older people reside in over 18,000 care homes in England. A recent social care survey found up to 50% of older people in care homes felt their dignity was undermined. Upholding the dignity of older people in care homes has implications for residents' experiences and the role of Registered Nurses. The study aimed to explore how best to translate the concept of dignity into care home practice, and how to support this translation process by enabling Registered Nurses to provide ethical leadership within the care home setting. Action research with groups of staff (Registered Nurses and non-registered caregivers) and groups of residents and relatives in four care homes in the south of England to contribute to the development of the dignity toolkit. Action research groups were facilitated by 4 researchers (2 in each care home) to discuss dignity principles and experiences within care homes. These groups reviewed and developed a dignity toolkit over six cycles of activity (once a month for 6months). The Registered Nurses were individually interviewed before and after the activity. Hard copy and online versions of a dignity toolkit, with tailored versions for participating care homes, were developed. Registered Nurses and caregivers identified positive impact of making time for discussion about dignity-related issues. Registered Nurses identified ongoing opportunities for using their toolkit to support all staff. Nurses and caregivers expressed feelings of empowerment by the process of action research. The collaborative development of a dignity toolkit within each care home has the potential to enable ethical leadership by Registered Nurses that would support and sustain dignity in care homes. Action research methods empower staff to maintain dignity for older people within the care home setting through the development of practically useful toolkits to support everyday care practice. Providing opportunities for caregivers to be involved in such initiatives may promote their dignity and sense of being valued. The potential of bottom-up collaborative approaches to promote dignity in care therefore requires further research.

Unexpected happenings: a relationship-centred and active Swedish care home for people with dementia

Unexpected happenings: a relationship-centred and active Swedish care home for people with dementia

An experiential description of the tango in interwar Greece (1922-1940) through the life narratives of elderly people in care homes

The revolutionary rhythm of tango – as well as the simplicity of its dancing steps – contributed to the expansion of its popularity in Greece during the interwar period (1922-1940). The purpose of this paper is to explore the socio-cultural reasons for which tango became a popular dance in Greece during that era. More particularly, the research study had two aims: to present through an experiential description of the practice of tango during the interwar period, as well as to explore the emotional experience of nostalgia, triggered by popular Greek tango-songs from the interwar period. Although the Greek tango has not been prominent in Greece as a form of music or dance expression since the 1960s, I carried out a two-year ethnographic research in two homes for the elderly in and outside Athens. By adopting an interactive musical approach followed by discussions with the home residents, I was able to gain information regarding their cultural and social relationship to tango. A total of 30 narratives were collected from the residents. Historical and literary texts (e.g. press articles of that era and music magazines featuring commentaries on the music and dance trends of that age) were used as secondary narrative voices.

Oral health for adults in care homes.

Essential facts It is estimated that 80% of the 400,000-plus adults in UK care homes have dementia. More than half of older people in care homes have tooth decay, compared with 40% of over-75s and 33% of over-85s in other accommodation. Care home residents are likely to have fewer teeth, and not have enough teeth to eat or socialise comfortably.

Medication use in people with late stage Parkinson's disease and parkinsonism living at home and in institutional care in north-east England: A balance of symptoms and side-effects?

BackgroundPeople with Parkinson's disease (PD) and parkinsonism living in care homes (residential or nursing care) in the UK represent around 10–15% of all people with PD and 3–5% of all care home residents. There are few previous data on medication use in those living in care homes with PD. In this study we aimed to compare medication use in a representative cohort of people with PD living in care homes in north-east England with those living in their own homes. MethodAll people with late stage (Hoehn and Yahr III-V) idiopathic PD, PD dementia, or atypical parkinsonian syndromes under the care of the Northumbria Healthcare NHS Foundation Trust PD service on 1st January 2015 were identified. Demographic, disease characteristics and medication use data were collected from an audit of medical notes of all those identified. ResultsWe identified 377 people who met the inclusion criteria, 91 (24.1%) of whom were living in a care home. Disease stage, age and age at disease onset were all significantly higher and levodopa equivalent dose significantly lower in those living in care homes, although disease duration and levodopa dose were not. Greater age, lower levodopa equivalent dose and higher disease stage were independently associated with being in a care home. ConclusionsAlthough people in care homes had more advanced disease, they were on a significantly lower levodopa equivalent dose. This is likely to be due to the requirement to balance symptom management with drug side-effects.

Care homes lay assessor project – using volunteers to improve the quality of life of older people living in care homes

Purpose – The purpose of this paper is to outline the learning from an innovative approach to using volunteers as lay assessors in order to secure improvements in the quality of life of older people in care homes. Design/methodology/approach – The paper describes the implementation of pilot lay assessor scheme in Bristol and systematically explores the learning from this case study. Findings – The paper concludes that despite a number of important challenges and limitations, a lay assessor approach, particularly when conducted in close co-operation with a local council, can indeed provide demonstrable quality of life benefits for older people in closed institutions such as care homes. Practical implications – The case study highlights a number of key implications for practice including: it is possible to recruit, motivate and train volunteers to provide a lay assessor scheme; working with a local council and providers of care homes can produce real improvements in quality of life; lay assessor schemes are an important way of “shining a light” into closed institutions; defining quality of life and balancing this with institutional attitudes towards risk can be extremely challenging; and working with care home managers, providing them with ideas and support can be effective in bringing about meaningful change. Originality/value – This case study reports on one of the first volunteer lay assessor initiatives in the country. There has been very little if any reporting or analysis of such schemes. This paper therefore adds significantly to this important are of public policy and provision.

Cost-effectiveness of a physical exercise programme for residents of care homes: a pilot study.

BackgroundOomph! Wellness organises interactive exercise and activity classes (Oomph! classes) for older people in care homes. We investigated the cost-effectiveness of Oomph! classes.MethodsHealth-related quality of life was measured using the EQ-5D-5 L questionnaire at three time points; 3 months and 1 week prior to the start of the classes and after 3 months of Oomph! classes. Costs included the costs of organising the classes, training instructors and health service use (General Practitioner (GP) and hospital outpatient visits). To determine the cost-effectiveness of Oomph! classes, total costs and quality-adjusted life-years (QALYs) during the 3 months after initiation of the classes were compared to the total costs and QALYs of the 3 months prior to the classes and extrapolated to a 1-year time horizon. Uncertainty was taken into account using one-way and probabilistic sensitivity analysis.ResultsSixteen residents completed all three EQ-5D-5 L questionnaires. There was a decrease in mean health related quality of life per participant in the 3 months before Oomph! classes (0.56 to 0.52, p = 0.26) and an increase in the 3 months after the start of Oomph! classes (0.52 to 0.60, p = 0.06), but the changes were not statistically significant. There were more GP visits after the start of Oomph! classes and fewer hospital outpatient visits, leading to a slight decrease in NHS costs (mean £132 vs £141 per participant), but the differences were not statistically significant (p = 0.79). In the base case scenario, total costs for Oomph! classes were £113 higher per participant than without Oomph! classes (£677 vs £564) and total QALYs were 0.074 higher (0.594 vs 0.520). The incremental costs per QALY gained were therefore £1531. The 95 % confidence intervals around the cost/QALY gained varied from dominant to dominated, meaning there was large uncertainty around the cost-effectiveness results. Given a willingness to pay threshold of £20,000 per QALY gained, Oomph! classes had a 62 %–86 % probability of being cost-effective depending on the scenario used.ConclusionsPreliminary evidence suggests that Oomph! classes may be cost-effective, but further evidence is needed about its impact on health-related quality of life and health service use.

Study protocol Implementation of the Veder contact method (VCM) in daily nursing home care for people with dementia: an evaluation based on the RE-AIM framework

ABSTRACTObjectives: People with dementia in nursing homes benefit from person-centred care methods. Studies examining the effect of these methods often fail to report about the implementation of these methods. The present study aims to describe the implementation of the Veder contact method (VCM) in daily nursing home care.Method: A process analysis will be conducted based on qualitative data from focus groups with caregivers and interviews with key figures. To investigate whether the implementation of VCM is reflected in the attitude and behaviour of caregivers and in the behaviour and quality of life of people with dementia, a controlled observational cohort study will be conducted. Six nursing home wards implementing VCM will be compared with six control wards providing Care As Usual. Quantitative data from caregivers and residents will be collected before (T0), and 9–12 months after the implementation (T1). Qualitative analysis and multilevel analyses will be carried out on the collected data and structured based on the constructs of the RE-AIM framework (Reach, Effectiveness, Adoption, Implementation, Maintenance).Conclusion: By using the RE-AIM framework this study introduces a structured and comprehensive way of investigating the implementation process and implementation effectiveness of person-centred care methods in daily dementia care.

Interventions to optimise prescribing for older people in care homes.

There is a substantial body of evidence that prescribing for care home residents is suboptimal and requires improvement. Consequently, there is a need to identify effective interventions to optimise prescribing and resident outcomes in this context. This is an update of a previously published review (Alldred 2013). The objective of the review was to determine the effect of interventions to optimise overall prescribing for older people living in care homes. For this update, we searched the Cochrane Central Register of Controlled Trials (CENTRAL) (including the Cochrane Effective Practice and Organisation of Care (EPOC) Specialised Register), MEDLINE, EMBASE and CINAHL to May 2015. We also searched clinical trial registries for relevant studies. We included randomised controlled trials evaluating interventions aimed at optimising prescribing for older people (aged 65 years or older) living in institutionalised care facilities. Studies were included if they measured one or more of the following primary outcomes: adverse drug events; hospital admissions; mortality; or secondary outcomes, quality of life (using validated instrument); medication-related problems; medication appropriateness (using validated instrument); medicine costs. Two authors independently screened titles and abstracts, assessed studies for eligibility, assessed risk of bias and extracted data. We presented a narrative summary of results. The 12 included studies involved 10,953 residents in 355 (range 1 to 85) care homes in ten countries. Nine studies were cluster-randomised controlled trials and three studies were patient-randomised controlled trials. The interventions evaluated were diverse and often multifaceted. Medication review was a component of ten studies. Four studies involved multidisciplinary case-conferencing, five studies involved an educational element for health and care professionals and one study evaluated the use of clinical decision support technology. We did not combine the results in a meta-analysis due to heterogeneity across studies. Interventions to optimise prescribing may lead to fewer days in hospital (one study out of eight; low certainty evidence), a slower decline in health-related quality of life (one study out of two; low certainty evidence), the identification and resolution of medication-related problems (seven studies; low certainty evidence), and may lead to improved medication appropriateness (five studies out of five studies; low certainty evidence). We are uncertain whether the intervention improves/reduces medicine costs (five studies; very low certainty evidence) and it may make little or no difference on adverse drug events (two studies; low certainty evidence) or mortality (six studies; low certainty evidence). The risk of bias across studies was heterogeneous. We could not draw robust conclusions from the evidence due to variability in design, interventions, outcomes and results. The interventions implemented in the studies in this review led to the identification and resolution of medication-related problems and improvements in medication appropriateness, however evidence of a consistent effect on resident-related outcomes was not found. There is a need for high-quality cluster-randomised controlled trials testing clinical decision support systems and multidisciplinary interventions that measure well-defined, important resident-related outcomes.

Alleviating staff stress in care homes for people with dementia: protocol for stepped-wedge cluster randomised trial to evaluate a web-based Mindfulness- Stress Reduction course

BackgroundThere has been continuing change in the nature of care homes in the UK with 80 % of residents now living with some form of dementia or memory problem. Caring in this environment can be complex, challenging and stressful for staff; this can affect the quality of care provided to residents, lead to staff strain and burnout, and increase sickness, absence and turnover rates. It is therefore important to find interventions to increase the wellbeing of staff that will not only benefit staff themselves but also residents and care providers. Mindfulness training is known to be effective in treating a variety of physical and mental health conditions.Methods and designThe study uses mixed methods centred on a stepped-wedge cluster randomised trial. Thirty care homes in Wales are implementing a brief web-based mindfulness training course, starting in random sequence. Four to ten consenting staff from each facility undertake the course and complete validated questionnaires at baseline and after eight and 20 weeks. We shall also interview a stratified sample of ten trained staff and analyse the transcripts thematically. The primary outcome is stress; secondary outcomes include job satisfaction, attitudes towards residents and sickness absence rates.DiscussionWith increasing numbers of people living with dementia in care homes and causing stress in their carers, it is important to evaluate support strategies for staff. Mindfulness-based therapies may be of potential benefit and need detailed examination.Trial registrationISRCTN registry. ISRCTN80487202. Registered 24 July 2013.

When visiting people in care homes, accentuate the positive

When visiting people in care homes, accentuate the positive

Protecting care home residents from mistreatment and abuse: on the need for policy.

With a rising older person population with increasing life expectancies, the demand for care homes will increase in the future. Older people in care homes are particularly vulnerable due to their dependencies related to cognitive and/or functional self-care challenges. Although many care homes provide good care, maltreatment and abuse of older people can and does occur. One major step in preventing and addressing maltreatment in care homes is having comprehensive and responsive policy, which delineates national expectations that are locally implemented. This paper examines the literature related to maltreatment in care homes and argues for policy based on a multisystems approach. Policy needs to firstly acknowledge and address general societal issues which tacitly impact on older person care delivery, underpin how care homes and related systems should be operationalized, and finally delineate expected standards and outcomes for individual experience of care. Such a policy demands attention at every level of the health care and societal system. Furthermore, contemporary issues central to policy evolution in care homes are discussed, such as safeguarding education and training and fostering organization whistle-blowing protection.

End of life care interventions for people with dementia in care homes: addressing uncertainty within a framework for service delivery and evaluation.

BackgroundThere has been an increase in research on improving end of life (EoL) care for older people with dementia in care homes. Findings consistently demonstrate improvements in practitioner confidence and knowledge, but comparisons are either with usual care or not made. This paper draws on findings from three studies to develop a framework for understanding the essential dimensions of end of life care delivery in long-term care settings for people with dementia.MethodsThe data from three studies on EoL care in care homes: (i) EVIDEM EoL, (ii) EPOCH, and (iii) TTT EoL were used to inform the development of the framework. All used mixed method designs and two had an intervention designed to improve how care home staff provided end of life care. The EVIDEM EoL and EPOCH studies tracked the care of older people in care homes over a period of 12 months. The TTT study collected resource use data of care home residents for three months, and surveyed decedents' notes for ten months,ResultsAcross the three studies, 29 care homes, 528 residents, 205 care home staff, and 44 visiting health care professionals participated. Analysis of showed that end of life interventions for people with dementia were characterised by uncertainty in three key areas; what treatment is the 'right' treatment, who should do what and when, and in which setting EoL care should be delivered and by whom? These uncertainties are conceptualised as Treatment uncertainty, Relational uncertainty and Service uncertainty. This paper proposes an emergent framework to inform the development and evaluation of EoL care interventions in care homes.ConclusionFor people with dementia living and dying in care homes, EoL interventions need to provide strategies that can accommodate or "hold" the inevitable and often unresolvable uncertainties of providing and receiving care in these settings.

The prevalence, impact and management of musculoskeletal disorders in older people living in care homes: a systematic review.

The aim was to systematically review the literature describing the prevalence, impact and current management of musculoskeletal pain in older people living in care homes. Published literature (AMED, CINAHL, EMBASE, psycINFO, MEDLINE, Cochrane Library) and unpublished literature (OpenGrey, the WHO International Clinical Trials Registry Platform, Current Controlled Trials, UK National Research Register Archive) were searched on 1 March 2015. All studies assessing the prevalence, impact and management of musculoskeletal disorders in older people living in care homes were included. Literature was appraised using the CASP cohort and qualitative critical appraisal tools. Data were analysed using descriptive statistical approaches, meta-analysis and meta-ethnography techniques. Twenty-four papers reporting the results of 263,775 care home residents in 12 countries were identified. The evidence base was moderate in quality. Prevalence of musculoskeletal pain for people in care homes was 30.2 % (95 % confidence intervals 29.9-30.5 %; n = 105,463). Care home residents reported that musculoskeletal pain had a significant impact on their perceived independence and overall ability to participate in everyday activities of daily living. Three papers which presented data on interventions demonstrated that whilst multi-component assessment and management packages did not significantly change clinical outcomes, these empowered care home staff to feel more confident in managing these patients. Musculoskeletal pain is a common problem in care homes worldwide, and residents report significant impact on their lives. However, there is uncertainty regarding how to assess and manage such pain. PROSPERO Registration Number: CRD42014009824.

Living with Autistic Spectrum Disorders: Families, Homes and the Disruption of Space

AbstractGeographical perspectives on the relationships between people with Autistic Spectrum Disorders (ASD), their home carers and the nature of domestic space are rare. People with an ASD have high levels of anxiety and a range of behaviours that create challenges for family carers. Interviews with forty carers in Sydney reveal how disruptive behaviours, including being noisy, hyperactive, obsessive and controlling, are very demanding for all carers. Carers have adapted home spaces, restricted and reduced patterns of employment and socialisation, and sometimes avoided the home, altering relationships between parents and other siblings. Home care for people with ASD has reduced the sense of home as a place of relaxation peace and stability, and, while providing a more caring environment for people with ASD, has contributed to the partial institutionalisation of the home.