scholarly journals COVID-19 health and social care access for autistic people and individuals with intellectual disability: A European policy review.

2020 ◽  
Author(s):  
Bethany Oakley ◽  
Julian Tillmann ◽  
Amber Ruigrok ◽  
Aurélie Baranger ◽  
Christian Takow ◽  
...  
Keyword(s):  
Intensive Care ◽  
Intellectual Disability ◽  
Social Care ◽  
Severe Illness ◽  
International Human Rights Law ◽  
Care Access ◽  
Autistic People ◽  
Health And Social Care ◽  
Care Systems ◽  
Communication Needs

Background: The global COVID-19 pandemic has had an unprecedented impact on European health and social care systems, with demands on testing, hospital and intensive care capacity exceeding available resources in many regions. This has led to concerns that some groups, including autistic people/ those with intellectual disability (ID), may become excluded from services. Methods: We reviewed policies from 15 European member states, published March-July 2020, pertaining to: 1) accessibility of COVID-19 testing; 2) provisions for treatment, hospitalisation and intensive care units (ICU); and 3) changes to standard health and social care. In parallel, we analysed survey data on the lived experiences of 1,301 autistic people and caregivers.Results: Autistic people/ those with ID experienced significant barriers accessing COVID-19 services. First, despite these groups being at elevated risk for severe illness due to co-morbid health conditions, there was a lack of access to COVID-19 testing. Second, many COVID-19 outpatient and inpatient treatment services were reported to be inaccessible - predominantly resulting from individual differences in communication needs. Third, ICU triage protocols (directly or indirectly) resulted in discriminatory exclusion from lifesaving treatments. Last, interruptions to standard health and social care left over 70% of autistic people without everyday support.Conclusions: The COVID-19 pandemic has further emphasised healthcare inequalities for autistic people/ those with ID, likely contributing to disproportionate increases in morbidity and mortality in these groups. Current policies and guidelines regarding the accessibility of COVID-19 services require urgent revision to prevent the widespread exclusion of autistic people and those with ID from services, which represents a violation of international human rights law.

scholarly journals COVID-19 health and social care access for autistic people: European policy review

BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e045341
Author(s):  
Bethany Oakley ◽  
Julian Tillmann ◽  
Amber Ruigrok ◽  
Aurélie Baranger ◽  
Christian Takow ◽  
...  
Keyword(s):  
Intensive Care ◽  
Social Care ◽  
Vulnerable Groups ◽  
Severe Illness ◽  
International Human Rights Law ◽  
Care Access ◽  
Autistic People ◽  
Health And Social Care ◽  
Care Systems ◽  
Communication Needs

BackgroundThe global COVID-19 pandemic has had an unprecedented impact on European health and social care systems, with demands on testing, hospital and intensive care capacity exceeding available resources in many regions. This has led to concerns that some vulnerable groups, including autistic people, may be excluded from services.MethodsWe reviewed policies from 15 European member states, published in March–July 2020, pertaining to (1) access to COVID-19 tests; (2) provisions for treatment, hospitalisation and intensive care units (ICUs); and (3) changes to standard health and social care. In parallel, we analysed survey data on the lived experiences of 1301 autistic people and caregivers.ResultsAutistic people experienced significant barriers when accessing COVID-19 services. First, despite being at elevated risk of severe illness due to co-occurring health conditions, there was a lack of accessibility of COVID-19 testing. Second, many COVID-19 outpatient and inpatient treatment services were reported to be inaccessible, predominantly resulting from individual differences in communication needs. Third, ICU triage protocols in many European countries (directly or indirectly) resulted in discriminatory exclusion from lifesaving treatments. Finally, interruptions to standard health and social care left over 70% of autistic people without everyday support.ConclusionsThe COVID-19 pandemic has further exacerbated existing healthcare inequalities for autistic people, probably contributing to disproportionate increases in morbidity and mortality, mental health and behavioural difficulties, and reduced quality of life. An urgent need exists for policies and guidelines on accessibility of COVID-19 services to be updated to prevent the widespread exclusion of autistic people from services, which represents a violation of international human rights law.

scholarly journals Systemic Safety Inequities for People with Learning Disabilities: A Qualitative Integrative Analysis of The Experiences of English Health and Social Care for People with Learning Disabilities, Their Families and Carers.

2021 ◽  
Author(s):  
Lauren Ramsey ◽  
Abigail Albutt ◽  
Kayley Perfetto ◽  
Naomi Quinton ◽  
John Baker ◽  
...  
Keyword(s):  
Learning Disabilities ◽  
Social Care ◽  
Safety Net ◽  
Integrative Approach ◽  
Care Providers ◽  
Care Needs ◽  
Health And Social Care ◽  
Care Systems ◽  
Individualised Care ◽  
Communication Needs

Abstract Background Failures in care for people with learning disabilities have been repeatedly highlighted and remain an international issue, exemplified by a disparity in premature death due to poor quality and unsafe care. This needs urgent attention. Therefore, the aim of the study was to understand the care experiences of people with learning disabilities, and explore the potential patient safety issues they, their carers and families raised. Methods Two data sources exploring the lived experience of care for people with learning disabilities were synthesised using an integrative approach, and explored using reflexive thematic analysis. This comprised two focus groups with a total of 13 people with learning disabilities and supportive staff, and 377 narratives posted publicly via the feedback platform Care Opinion. Results The qualitative exploration highlighted three key themes. Firstly, health and social care systems operated with varying levels of rigidity. This contributed to an inability to effectively cater to; complex and individualised care needs, written and verbal communication needs and needs for adequate time and space. Secondly, there were various gaps and traps within systems for this population. This highlighted the importance of care continuity, interoperability and attending to the variation in support provision from professionals. Finally, essential ‘dependency work’ was reliant upon social capital and fulfilled by paid and unpaid caring roles to divergent extents, however, advocacy provided an additional supportive safety net. Conclusions A series of safety inequities have been identified for people with learning disabilities, alongside potential protective buffers. These include; access to social support and advocacy, a malleable system able to accommodate for individualised care and communication needs, adequate staffing levels, sufficient learning disabilities expertise within and between care settings, and the interoperability of safety initiatives. In order to attend to the safety inequities for this population, these factors need to be considered at a policy and organisational level, spanning across health and social care systems. Findings have wide ranging implications for those with learning disabilities, their carers and families and health and social care providers, with the potential for international learning more widely.

scholarly journals Carer Empowerment Is Key to Reduce Dementia Care Inequalities in the Middle East

2021 ◽  
Vol 18 (8) ◽  
pp. 4378
Author(s):  
Syed Fahad Javaid ◽  
Aishah Al-Zahmi ◽  
Munir Abbas
Keyword(s):  
Middle East ◽  
Social Care ◽  
Evidence Based ◽  
Political Factors ◽  
Knowledge Based ◽  
Care And Support ◽  
Health And Social Care ◽  
Care Systems ◽  
Spiritual Perspectives ◽  
Do So

Dementia represents a significant problem in the Middle East. Sociocultural and political factors that shape conceptions of health and care tend to stifle research and the dissemination of knowledge throughout the Middle East. These socio-political challenges concerning engagement with individuals living with dementia and their carers include language barriers, stigmatization, logistical constraints, lack of informal support outside of hospitals, and over-dependence on clinicians for dementia information. There is an urgent need in the Middle East to increase care and support for adults with dementia and their carers, enhance research efforts and improve the dissemination of information related to dementia in the region. One possible way to do so is to begin to promote a knowledge-based culture throughout the Middle East. This can be achieved by aligning traditional deterministic and spiritual perspectives of mental health with more Western, scientific, and evidence-based models. We suggest employing practical, multidimensional approaches to deal with the stated challenges, both at individual and societal levels. Doing so will improve knowledge of dementia and allow health and social care systems in the Middle East to begin to address a growing problem.

Health and Social Care Systems

2020 ◽  
pp. 49-66
Author(s):  
Anna Coleman ◽  
Jolanta Shields ◽  
Tim Gilling
Keyword(s):  
Social Care ◽  
Health And Social Care ◽  
Care Systems

scholarly journals Háziorvosok és idősellátás egy kérdőíves kutatás tükrében

2018 ◽  
Vol 159 (8) ◽  
pp. 312-319
Author(s):  
Anett Mária Tróbert ◽  
Zsuzsanna Széman
Keyword(s):  
Health Care ◽  
General Practitioners ◽  
Social Care ◽  
The Elderly ◽  
Care Process ◽  
Efficient Operation ◽  
Health And Social Care ◽  
Care Systems ◽  
Care System

Abstract: According to statistical data, the number of healthy life years is not increasing in proportion with the longer average life expectancy. In the ageing societies, the long-term care systems are increasingly overburdened; cost-efficient operation and the related coordination of services is one of the key questions for their sustainability. The present separation of the health care and social care systems causes numerous difficulties. One aim of the online research by questionnaire was to survey the attitude of general practitioners – who play a very important part in care for the elderly – towards their elder patients, the patients’ family members, and social workers providing eldercare. The other aim was to gather information on shortcomings experienced by doctors in the care system and on what possibilities general practitioners see for the improvement of eldercare. Semi-structured questionnaires were applied and analysed by descriptive and content methodology. The questionnaires were sent out to 5060 addresses around the country: a total of 145 were returned filled in. The respondents made many recommendations for the improvement of eldercare in the categories of development of social services, family support, development of health services, and societal cooperation. The areas in need of development named by the general practitioners are closely interrelated: the reform of social care would support the health care system and vice versa. More effective operation of the health and social care systems would ease the burdens of families, and at the same time encourage more active participation of families in the care process. And the systematic education of society and communities is a long-term investment that would strengthen a positive attitude towards old age and a value-oriented view of the ageing process that is one of the basic conditions for successful social integration of the elderly. Orv Hetil. 2018; 159(8): 312–319.

Beyond healthcare leadership? The imperative for health and social care systems

2020 ◽  
Vol 33 (4) ◽  
pp. 351-363
Author(s):  
John Duncan Edmonstone
Keyword(s):  
Health Care ◽  
Leadership Development ◽  
Social Care ◽  
Current Model ◽  
Healthcare Leadership ◽  
Content Type ◽  
Health And Social Care ◽  
The Future ◽  
Care Systems ◽  
The Uk

Purpose This paper aims to make the case that there is a need to move beyond a focus on an approach to leadership development which is confined to health care only. It argues that, given the economic, financial, social and organisational context within which health and social care organisations in the UK operate, there is a need to develop leadership within health and social care systems, rather than within the existing “siloed” sectors. Design/methodology/approach The paper considers the context within which health and social care organisations in the UK operate; examines the nature of those organisations; makes the case for focusing on the health and social car system through systems leadership; and identifies the need for leadership, rather than leader development. Findings There is a danger of health and social care organisations “walking backwards into the future” with eyes fixed on the past. The future lies with treating health and social care as a system, rather than focusing on organisations. The current model is individual leader focused, but the emerging model is one of collective multi-agency teams. Originality/value The paper seeks to go beyond a health-care-only focus, by asserting that there is a need to regard health and social care as a single system, delivered by a multiplicity of different organisations. This has implications for the kind of leadership involved and for how this might be developed.

scholarly journals What elements of a systems’ approach to bereavement are most effective in times of mass bereavement? A narrative systematic review with lessons for COVID-19

2020 ◽  
Vol 34 (9) ◽  
pp. 1165-1181 ◽  
Author(s):  
Emily Harrop ◽  
Mala Mann ◽  
Lenira Semedo ◽  
Davina Chao ◽  
Lucy E Selman ◽  
...  
Keyword(s):  
Systematic Review ◽  
Disaster Response ◽  
Social Care ◽  
Systems Approach ◽  
Evidence Base ◽  
System Level ◽  
Service Improvement ◽  
Current Crisis ◽  
Health And Social Care ◽  
Care Systems

Background: The global COVID-19 pandemic has left health and social care systems facing the challenge of supporting large numbers of bereaved people in difficult and unprecedented social conditions. Previous reviews have not comprehensively synthesised the evidence on the response of health and social care systems to mass bereavement events. Aim: To synthesise the evidence regarding system-level responses to mass bereavement events, including natural and human-made disasters as well as pandemics, to inform service provision and policy during the COVID-19 pandemic and beyond. Design: A rapid systematic review was conducted, with narrative synthesis. The review protocol was registered prospectively ( www.crd.york.ac.uk/prospero , CRD 42020180723). Data sources: MEDLINE, Global Health, PsycINFO and Scopus databases were searched for studies published between 2000 and 2020. Reference lists were screened for further relevant publications, and citation tracking was performed. Results: Six studies were included reporting on system responses to mass bereavement following human-made and natural disasters, involving a range of individual and group-based support initiatives. Positive impacts were reported, but study quality was generally low and reliant on data from retrospective evaluation designs. Key features of service delivery were identified: a proactive outreach approach, centrally organised but locally delivered interventions, event-specific professional competencies and an emphasis on psycho-educational content. Conclusion: Despite the limitations in the quantity and quality of the evidence base, consistent messages are identified for bereavement support provision during the pandemic. High quality primary studies are needed to ensure service improvement in the current crisis and to guide future disaster response efforts.

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