scholarly journals Gaps in the System: Supporting People Living With Dementia and Their Caregivers

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 521-522
Author(s):  
Madeline King ◽  
Allie Peckham ◽  
Monika Roerig ◽  
Husayn Marani ◽  
Gregory Marchildon
Keyword(s):  
New York ◽  
Lived Experience ◽  
New York State ◽  
Social Needs ◽  
Decision Makers ◽  
Structured Interviews ◽  
Care Needs ◽  
Complex Needs ◽  
Program Administrators ◽  
Health And Social Care

Abstract As individuals are living longer, the prevalence of older adults living with dementia and other complex health and social care needs is on the rise (Alzheimer’s Association, 2020; CIHI, 2020). Correspondingly, efforts to develop supportive programming and policies for persons living with dementia (PLWDs) are of paramount importance (CIHR, 2019). The challenges faced by PLWDs and other complex health and social needs are widely known (CIHR, 2019), however, a systematic understanding of how and if current and long-standing efforts are adequately meeting the needs of these individuals remains elusive. This research sought to understand how program administrators, decision makers, PLWD, and caregivers across five North American jurisdictions (British Columbia, Ontario, Newfoundland and Labrador, New York State, and Vermont) perceived specific dementia care programs and support services within their respective jurisdictions. We performed an inductive analysis of semi-structured interviews (N=37) and identified on-going care gaps experienced by participants. We present three main gaps: 1) disconnected and uncoordinated system infrastructure, 2) lack of comprehensive services to meet the diverse needs of PLWD and their caregivers, and 3) inconsistency in how dementia is understood; with associated perceived remedies. The results suggest that even when attempts to address the needs of PLWD and their caregivers are put in place there remains significant limitations of systems. The perspectives of decision makers, program administrators and individuals with lived experience offer unique insight into how these experiences may be improved to better support the complex needs of PLWD and their caregivers.

scholarly journals “You know, we can change the services to suit the circumstances of what is happening in the world”: a rapid case study of the COVID-19 response across city centre homelessness and health services in Edinburgh, Scotland

2021 ◽  
Vol 18 (1) ◽  
Author(s):  
Tessa Parkes ◽  
Hannah Carver ◽  
Wendy Masterton ◽  
Danilo Falzon ◽  
Joshua Dumbrell ◽  
...  
Keyword(s):  
Substance Use ◽  
Harm Reduction ◽  
Social Needs ◽  
City Centre ◽  
Structured Interviews ◽  
Framework Analysis ◽  
Complex Needs ◽  
Health And Social Care ◽  
The Impact

Abstract Background The COVID-19 pandemic has necessitated unprecedented changes in the way that health, social, and housing services are delivered to individuals experiencing homelessness and problem substance use. Protecting those at high risk of infection/transmission, whilst addressing the multiple health and social needs of this group, is of utmost importance. This study aimed to document the impact of the COVID-19 pandemic on individuals who were experiencing homelessness in one city centre in Scotland, and how services adapted in response. Methods Semi-structured interviews were conducted with individuals with lived/living experience of homelessness (n = 10), staff within onethird sector service (n = 5), and external professionals (n = 5), during April-August 2020, using a rapid case study design. These were audio-recorded, fully transcribed, and analysed using Framework. Analysis was informed by inclusion health and equity-orientated approaches to meeting the needs of people with multiple and complex needs, and emerging literature on providing harm reduction in the context of COVID-19. Results Those with lived/living experience of homelessness and problem substance use faced a range of additional challenges during the pandemic. Mental health and use of substances were affected, influenced by social isolation and access to services. A range of supports were provided which flexed over the lockdown period, including housing, health and social care, substance use treatment, and harm reduction. As well as documenting the additional risks encountered, findings describe COVID-19 as a ‘path-breaking’ event that created opportunities to get evidence into action, increase partnership working and communication, to proactively address risks. Conclusions This rapid case study has described the significant impact of the COVID-19 pandemic on a group of people experiencing homelessness and problem substance use within one city centre in Scotland and provides a unique lens on service/professional responses. It concludes with lessons that can inform the international and ongoing response to this pandemic. It is vital to recognise the vision and leadership that has adapted organisational responses in order to reduce harms. We must learn from such successes that were motivated both by compassion and care for those vulnerable to harms and the desire to provide high-quality, evidence-based, harm reduction services.

“There Was No ‘That’s Not My Job’”: New York Area Agencies on Aging Approaches to Supporting Older Adults During the COVID-19 Pandemic

2021 ◽  
pp. 073346482199102
Author(s):  
Claire Pendergrast
Keyword(s):  
Older Adults ◽  
New York ◽  
New York State ◽  
Well Being ◽  
Contextual Influences ◽  
Structured Interviews ◽  
Response And Recovery ◽  
Pandemic Response ◽  
Increasing Demand ◽  
Priority Needs

The COVID-19 pandemic has disrupted many older adults’ traditional sources of formal and informal supports, increasing demand for Area Agency on Aging services (AAAs). This study examines strategies used by AAAs to support older adults’ health and well-being during COVID-19 and identifies contextual influences on AAA pandemic response activities. Semi-structured interviews were conducted with representatives of 20 AAAs in New York State. A combined inductive and deductive approach was used to code and thematically analyze the data. AAAs rapidly expanded capacity and dramatically modified program offerings, communications activities, and service delivery protocols to address emergent needs and minimize COVID-19 exposure risk for clients. AAAs’ trusted relationships with older adults and community partners improved their capacity to identify priority needs and coordinate appropriate supports. Policymakers should ensure that AAAs receive sustained financial and technical support to ensure critical community-based services are available for older adults throughout pandemic response and recovery.

Surviving metastatic non-small cell lung cancer (mNSCLC): The lived experience and supportive care needs of patients (pts) receiving immunotherapy (IT) or targeted therapy (TT).

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e24185-e24185
Author(s):  
Julia Elizabeth Lai-Kwon ◽  
Sarah Heynemann ◽  
Jacinthe Flore ◽  
Mary Duffy ◽  
Renata Kokanovic ◽  
...  
Keyword(s):  
Supportive Care ◽  
Lived Experience ◽  
Cancer Progression ◽  
Financial Planning ◽  
Supportive Care Needs ◽  
Trial Participation ◽  
Structured Interviews ◽  
Care Needs ◽  
Molecular Alteration ◽  
Tailored Information

e24185 Background: IT and TT have improved survival for many pts with mNSCLC. However, the lived experience of these pts is under-studied. We conducted a single centre, qualitative study to understand concerns and supportive care needs of this novel survivor population. Methods: Eligible pts had mNSCLC, aged >18, English speaking and > 6 months post initiation of IT/TT without progressive disease. Semi-structured interviews were conducted focusing on physical, psychological, social and functional impacts of diagnosis, therapy and prognosis. Interviews were audio-recorded and transcribed. The framework method of analysis was used. Results: 20 pts were interviewed between May-December 2019; median age 62 years (range 34-83), 13 (65%) female; median time since diagnosis of mNSCLC 27 months (range 10-108). 12/20 (60%) had tumours with a targetable molecular alteration (EGFR/ALK/BRAF). 6 were receiving IT, 11 TT, 2 IT and chemotherapy, 1 IT and TT. Dominant themes included: the experience of chronic toxicities (cutaneous, gastrointestinal, fatigue); psychological concerns (living with uncertainty, fear of cancer progression [FCP], scan-related anxiety, stigma around smoking, loneliness) and coping strategies (living in the present, practising self-care with exercise and meditation, early discussions with their treating team regarding future treatment options, and accessing psychology services); the desire for tailored information (internet resources, support groups, challenges in accessing pertinent information); and the desire for assistance with practical issues (financial planning, returning to work, challenges of long-term clinical trial participation, difficulty planning for the future). Conclusions: Longer term survivors of mNSCLC report significant physical, psychological and functional concerns and unmet needs. Self-management strategies for chronic toxicities, professional psychological services to manage FCP and scan-related anxiety, and tailored information regarding work and financial planning may mitigate these concerns. Future work should examine these issues in a larger population.

scholarly journals Incite to Practice: Development of a Realist-Informed Program Theory to Support Implementation of Intersectoral Partnerships

SAGE Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. 215824402110383
Author(s):  
Linda Irvine Fitzpatrick ◽  
Donald Maciver ◽  
Kirsty Forsyth
Keyword(s):  
Lived Experience ◽  
World View ◽  
Program Theory ◽  
Advisory Group ◽  
Care Needs ◽  
Partnership Development ◽  
Policy Practice ◽  
Historical Perspectives ◽  
Health And Social Care ◽  
Commercial Organizations

Policy internationally is supportive of intersectoral partnerships (ISPs) for promoting positive outcomes among people with complex social, psychological, and physical needs. This realist-informed study describes the development of a program theory to provide insight into enactment of effective ISPs. Interviews were completed with 18 senior staff with leadership roles in six ISPs, including voluntary, statutory, and commercial organizations, supporting people with complex health and social care needs. An iteratively developed and refined program theory, termed the “Incite” model, was developed, with collaboration with participants and an advisory group, including people with lived experience. Important contextual conditions that emerged included organizational culture, historical perspectives, policy, and social determinants of health. Mechanisms included desire for change, creating safe psychological spaces, establishing shared values, and talking about power. Outcomes included transformed world view, increased psychological safety, clarity of purpose, fluidity of relationships, and power shifting. Three phases of partnership development were also identified within the model. This study has led to a clearer, more rigorous, and systematic understanding, with recommendations for how ISPs might be developed or expanded. How the Incite model may be operationalized is discussed, as well as implications for policy, practice, and research.

scholarly journals THE HEALTH-RELATED TASKS PAID CAREGIVERS IN NEW YORK STATE PERFORM IN THE HOME

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S216-S216
Author(s):  
Jennifer M Reckrey ◽  
Emma Tsui ◽  
R S Morrison ◽  
Emma Geduldig ◽  
Robyn Stone ◽  
...  
Keyword(s):  
New York ◽  
Functional Impairment ◽  
Positive Impact ◽  
New York State ◽  
Structured Interviews ◽  
York State ◽  
Wide Range ◽  
Health Related ◽  
Paid Caregivers ◽  
At Home

Abstract Paid caregivers (e.g. home health aides, personal care attendants) are formally tasked with helping older adults with functional impairment meet their basic needs at home. This study used semi-structured interviews (n=30) with dyads of patients or their proxies and their paid caregivers in New York City to 1) understand the range of health-related tasks paid caregivers perform in the home and 2) determine if these tasks are taught in the New York State government’s Department of Health curricula. We found that patients, proxies, and paid caregivers all described that paid caregivers performed a wide range of health-related tasks that were often not a part of their formal training. Creating clear competencies for paid caregivers that reflect the full breadth of health-related tasks they may perform at home will help maximize the potentially positive impact of the paid caregiver workforce on the lives of patients living at home with functional impairment.

Trust Company Failures and Institutional Change in New York, 1875–1925

2017 ◽  
Vol 19 (2) ◽  
pp. 241-271 ◽  
Author(s):  
BRADLEY A. HANSEN
Keyword(s):  
New York ◽  
Financial Stability ◽  
Financial Regulation ◽  
New York State ◽  
The United States ◽  
Decision Makers ◽  
Leading Role ◽  
Trust Company ◽  
Late Nineteenth ◽  
Rule Making

In the late nineteenth and early twentieth centuries, New York State trust companies were successful, grew quickly, and failed rarely. The few failures, however, played a leading role in shaping the rules that governed trust companies. Because trust company failures were consistently interpreted as isolated departures from the norm of conservative management, trust companies were able to continue to participate in the rule-making process. The institutions that evolved promoted financial stability by imposing the costs of failure on decision makers and discouraging risky behavior. These failures shed new light on the treatment of failure and the development of corporate governance and financial regulation in the United States

scholarly journals A Qualitative Study of the Views of Health and Social Care Decision-makers on the Role of Wellbeing in Resource Allocation Decisions in the UK

Economies ◽  
2019 ◽  
Vol 7 (1) ◽  
pp. 14
Author(s):  
Tessa Peasgood ◽  
Jill Carlton ◽  
John Brazier
Keyword(s):  
Resource Allocation ◽  
Subjective Wellbeing ◽  
Social Care ◽  
Decision Makers ◽  
Structured Interviews ◽  
Health And Social Care ◽  
The Uk ◽  
Allocation Decisions ◽  
Resource Allocation Decisions

There has been growing international interest in the role that wellbeing measures could play within policy making in health and social care. This project explored the opinions of a sample of UK decision-makers on the relevance of wellbeing and subjective wellbeing (by which we mean good and bad feelings or overall evaluations of life, such as life satisfaction) for resource allocation decisions within health and social care. Through these discussions we draw out the perceived advantages and the potential concerns that decision-makers have about broadening out to wellbeing and subjective wellbeing rather than just measuring health. Three focus groups were conducted: with members of the National Institute for Health and Care Excellence (NICE) Citizen’s Council, with a Health and Wellbeing Board at a Local Authority and with Public Health England. In addition, eleven semi-structured interviews were held with staff from NHS England and members of a range of NICE committees. We identified a range of opinions about the role of wellbeing and a broadly held view that there was a need for improved consideration of broader quality of life outcomes. We also identified considerable caution in relation to the use of subjective wellbeing.

scholarly journals Institutional injustice: Implications for system transformation emerging from the mental health recovery narratives of people experiencing marginalisation

PLoS ONE ◽  
2021 ◽  
Vol 16 (4) ◽  
pp. e0250367
Author(s):  
Ada Hui ◽  
Stefan Rennick-Egglestone ◽  
Donna Franklin ◽  
Rianna Walcott ◽  
Joy Llewellyn-Beardsley ◽  
...  
Keyword(s):  
Mental Health ◽  
Lived Experience ◽  
Mental Health Problems ◽  
Personal Characteristics ◽  
Health Problems ◽  
System Transformation ◽  
Structured Interviews ◽  
Work Requirement ◽  
Complex Needs ◽  
Dominant Discourses

Background Institutional injustice refers to structures that create disparities in resources, opportunities and representation. Marginalised people experience institutional injustice, inequalities and discrimination through intersecting personal characteristics and social circumstances. This study aimed to investigate sources of institutional injustice and their effects on marginalised people with experience of mental health problems. Methods Semi-structured interviews were conducted with 77 individuals from marginalised groups with experience of mental health problems, including psychosis, Black, Asian and minority ethnic (BAME) populations, complex needs and lived experience as a work requirement. These were analysed inductively enabling sensitising concepts to emerge. Findings Three processes of institutional injustice were identified: not being believed because of social status and personal backgrounds; not being heard where narratives did not align with dominant discourses, and not being acknowledged where aspects of identity were disregarded. Harmful outcomes included disengagement from formal institutions through fear and mistrust, tensions and reduced affiliation with informal institutions when trying to consolidate new ways of being, and damaging impacts on mental health and wellbeing through multiple oppression. Conclusions Institutional injustice perpetuates health inequalities and marginalised status. Master status, arising from dominant discourses and heuristic bias, overshadow the narratives and experiences of marginalised people. Cultural competency has the potential to improve heuristic availability through social understandings of narrative and experience, whilst coproduction and narrative development through approaches such as communities of practice might offer meaningful avenues for authentic expression.

scholarly journals Having a voice

2018 ◽  
Vol 26 (4) ◽  
pp. 342-352 ◽  
Author(s):  
Rachel Massie ◽  
Richard Machin ◽  
Fiona McCormack ◽  
Judith Kurth
Keyword(s):  
Lived Experience ◽  
Homeless People ◽  
Urban Setting ◽  
City Centre ◽  
Research Approach ◽  
Structured Interviews ◽  
Content Type ◽  
Complex Needs ◽  
Peer Researchers ◽  
The Impact

PurposeThe purpose of this paper is to understand the lived experience of people who have experienced homelessness and street activity, and professional stakeholders’ views about the challenges faced by this client group. The study sought to identify measures to improve the current situation for both individuals experiencing homelessness and professionals working with them.Design/methodology/approachPeer researchers with lived experience of multiple and complex needs conducted semi-structured interviews/surveys with 18 participants (eight individuals experiencing homelessness and street activity and ten professional stakeholders). The authors of the paper conducted a thematic analysis of the data.FindingsThis paper offers insights into both the current challenges and assets for people who are or have been homeless in an urban setting. Key findings include the need for a coordinated partnership approach to address pathways to support, and the importance of developing opportunities for meaningful activity and building on local resources including giving homeless people a voice. These findings are discussed within the context of current policy (Housing First) and legislation (Homelessness Reduction Act 2017) and the impact on integrated care for people who have experienced homelessness.Research limitations/implicationsThe views explored in this study are specific to one city centre in the West Midlands; thus, generalisability may be limited.Originality/valueThis study presents a participatory research approach with peer researchers exploring the perspective of individuals experiencing homelessness and wider stakeholders. The findings of this research are considered with reference to the provisions of the HRA 2017.

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