The Costs and Benefits of Choice: Family Managers in Directly Funded Home Care

Abstract Directly funded (DF) home care, or consumer directed home care, gives program users a budget to choose their own services. Set in the Canadian province of Manitoba, our study examines the local DF program “Self and Family Managed Care”, which does not allow program users to hire and pay a family member. Incorporating a disability lens into care and aging studies, we share findings from a qualitative study based on 24 semi-structured interviews with DF users. We focus on the experiences of family managers, that is, representatives acting as a decision maker for an older adult. About half of the family managers in this study care for people living with dementia or cognitive decline. We identify two main themes: 1) service flexibility in DF reduces caregiver strain, 2) family managers tend to hire agencies rather than individuals to avoid administrative burden. Our discussion highlights the costs of DF from the perspective of caregivers as administrative burden (financial paperwork, finding workers, choosing a ‘good’ agency), and the benefits as flexibility (choosing workers, trusting workers, setting schedules, assigning work). We also consider the goals of family managers to enhance quality of life and avoid long-term residential care, in contrast to younger self-managers who desire control and autonomy. We recommend that DF programs need to reduce administrative work for users, support users in making informed choices, and find better ways to support, acknowledge and value the work of family managers and substitute decision makers.

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HGG-47. DECREASED GROWTH VELOCITY WITH LONG TERM USE OF BRAFV600e AND MEK INHIBITION IN A PATIENT WITH ANAPLASTIC GANGLIOGLIOMA

Neuro-Oncology ◽

10.1093/neuonc/noaa222.327 ◽

2020 ◽

Vol 22 (Supplement_3) ◽

pp. iii352-iii352

Author(s):

Hung Tran ◽

Robert Cooper

Keyword(s):

Growth Velocity ◽

Direct Result ◽

Chromosomal Microarray ◽

Mek Inhibition ◽

Follow Up Study ◽

The Family ◽

The Relationship

Abstract PURPOSE To describe decreased growth velocity with long term use of BRAFV600e and MEK inhibition in a patient with anaplastic ganglioglioma. RESULTS 4-year-old patient was found to have a 6 x 4.6 x 5 cm mass in the hypothalamus. Pathology consistent with anaplastic ganglioglioma and chromosomal microarray revealed a BRAFV600e mutation. Patient started on dabrafenib and trametinib and tumor decreased 85% after 3 months. She is stable without significant toxicities 39 months on therapy, and is now 8 years old. Patient had been growing at the 25% for weight and 12% for height but is now 65% for weight and 0.5% for height. It is difficult to tease out the relationship between the tumor, the location of the tumor, and the BRAF and MEK inhibitors and their effect on growth. Discussions with the family and endocrinology are ongoing but being <1% for height will lead to decrease in quality of life. CONCLUSIONS Further follow-up study is needed to determine if this is truly a long-term toxicity, or if this may just be a direct result of the location of the tumor. Would supplementation with growth hormone in this patient lead to losing control of a high grade tumor, or would it simply replace a hormone that is not produced?

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“We’re on a Merry-Go-Round”: Reflections of Patients and Carers after Completing Treatment for Sarcoma

Current Oncology ◽

10.3390/curroncol28040263 ◽

2021 ◽

Vol 28 (4) ◽

pp. 3003-3014

Author(s):

Rhys Weaver ◽

Moira O’Connor ◽

Richard Carey Smith ◽

Dianne Sheppard ◽

Georgia K. B. Halkett

Keyword(s):

Social Constructionist ◽

Rare Cancer ◽

Family Carers ◽

Structured Interviews ◽

Qualitative Research Design ◽

Previously Treated ◽

Sarcoma Treatment ◽

Silver Lining

Sarcoma is a rare cancer that has a significant impact on patients’ and carers’ quality of life. Despite this, there has been a paucity of research exploring the diverse experiences of patients and carers following sarcoma treatment. The aim of this study was to explore patients’ and carers’ reflections on life after treatment for sarcoma. A qualitative research design with a social constructionist epistemology was used. Participants included patients previously treated for sarcoma (n = 21) and family carers of patients treated for sarcoma (n = 16). Participants completed semi-structured interviews which were analysed using thematic analysis. Three primary themes were identified: “This journey is never going to be over”, “But what happens when I am better?”, and finding a silver lining. Participants represented sarcoma as having a long-term, and sometimes indefinite, threat on their life that they had limited control over. Conclusions: This study highlight the heterogeneous and ongoing needs of sarcoma survivors and their families. Patients and carers strove to translate their experiences in a meaningful way, such as by improving outcomes for other people affected by sarcoma. Parental carers in particular attempted to protect the patient from the ongoing stress of managing the disease.

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Post–Intensive Care Syndrome in Family Decision Makers of Long-term Acute Care Hospital Patients

American Journal of Critical Care ◽

10.4037/ajcc2017414 ◽

2017 ◽

Vol 26 (5) ◽

pp. 416-422 ◽

Cited By ~ 3

Author(s):

Amy Petrinec

Keyword(s):

Quality Of Life ◽

Intensive Care ◽

Acute Care ◽

Acute Care Hospitals ◽

Summary Score ◽

Decision Makers ◽

Family Decision ◽

Post Intensive Care Syndrome

Background Family members of critically ill patients experience indications of post–intensive care syndrome, including anxiety, depression, and posttraumatic stress disorder. Despite increased use of long-term acute care hospitals for critically ill patients, little is known about the impact of long-term hospitalization on patients’ family members. Objectives To examine indications of post–intensive care syndrome, coping strategies, and health-related quality of life among family decision makers during and after patients’ long-term hospitalization. Methods A single-center, prospective, longitudinal descriptive study was undertaken of family decision makers of adult patients admitted to long-term acute care hospitals. Indications of post–intensive care syndrome and coping strategies were measured on the day of hospital admission and 30 and 60 days later. Health-related quality of life was measured by using the Short Form-36, version 2, at admission and 60 days later. Results The sample consisted of 30 family decision makers. On admission, 27% reported moderate to severe anxiety, and 20% reported moderate to severe depression. Among the decision makers, 10% met criteria for a provisional diagnosis of posttraumatic stress disorder. At admission, the mean physical summary score for quality of life was 47.8 (SD, 9.91) and the mean mental summary score was 48.00 (SD, 10.28). No significant changes occurred during the study period. Problem-focused coping was the most frequently used coping strategy at all time points. Conclusion Family decision makers of patients in long-term acute care hospitals have a significant prevalence of indications of post–intensive care syndrome.

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At-home care : interactions between nurses and the elderly/family

Acta Paulista de Enfermagem ◽

10.1590/s0103-21002012000800012 ◽

2012 ◽

Vol 25 (spe1) ◽

pp. 74-80

Author(s):

Esperança Alves Gago ◽

Manuel José Lopes

Keyword(s):

Home Care ◽

Nursing Practice ◽

The Elderly ◽

Diagnostic Assessment ◽

Care Process ◽

Structured Interviews ◽

The Family ◽

Home Context ◽

The Relationship ◽

At Home

OBJECTIVE: To understand the interaction process between the elderly and the family and the nurses during home care. METHODS: Grounded theory qualitative study in a community where 40% of the population is aged 65 or above. The collection of data was made via the non-participating observation of nursing practice during 41 home visits and semi-structured interviews to nurses, the elderly and the family. RESULTS: the following categories emerged - structural organization of at-home care, diagnostic assessment in context and therapeutic intervention in context. CONCLUSION: the central category was "Building the relationship in an at-home context", due to the fact that the relationship between the nurse, the elderly and the family is central across the entire care process. The relation is, simultaneously, the context for all the care and a therapeutic instrument.

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USE OF REGRESSION ANALYSIS IN FORECAST TASKS

Vestnik scientific and methodological council in environmental engineering and water management ◽

10.26897/2618-8732-2020-22-27 ◽

2020 ◽

pp. 22-27

Author(s):

E.S. Lartseva ◽

◽

A.D. Kuznetsova

Keyword(s):

Regression Analysis ◽

Animal Population ◽

Short Term ◽

Statistical Estimates ◽

Term Forecast ◽

Applied Software ◽

The Family ◽

The Russian Federation

Based on official statistics on the number, of representatives of the family of non-ruminant cloven-hoofed animals (Artiodactyl) on the territory of the Russian Federation. Using the example of two species: domestic pigs and wild boars, the dynamics of the indicator for the long term is analyzed. Multidirectional trends were revealed for each species. Mathematical models of the dynamics of the livestock were obtained using the methods of regression analysis and applied software. Statistical estimates of the quality of animal population models were obtained. The short-term forecast for 2020 has been fulfilled.

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What motivates informal caregivers of people with dementia (PWD): a qualitative study

BMC Palliative Care ◽

10.1186/s12904-019-0491-9 ◽

2019 ◽

Vol 18 (1) ◽

Cited By ~ 1

Author(s):

Shakiba Zahed ◽

Maryam Emami ◽

Shahrzad Bazargan-Hejazi ◽

Ahmad Ali Eslami ◽

Majid Barekatain ◽

...

Keyword(s):

Social Media ◽

Quality Of Care ◽

Qualitative Study ◽

Motivating Factors ◽

Structured Interviews ◽

Thematic Content Analysis ◽

People With Dementia ◽

The Family ◽

Burden Of Caring

Abstract Background The burden of caring for People with Dementia (PWD) is heavy; identifying incentives that motivate them in providing care is essential in facilitating and optimizing care. This study aims to explore and describe these motivating factors. Methods We conducted this qualitative study between January 2016 and January 2017 in Isfahan, Iran. Data were extracted through in-depth, semi-structured interviews with 19 caregivers of PWD. These data were then examined through thematic content analysis. Results We identified four categories of psychological motives based on the caregivers’ feedback and experience. These include 1) Moral-based motives, 2) Religious, and spiritual motives; 3) Financial motives, and 4) Wicked motives. Conclusions Our results revealed several aspects of caregivers’ motives. They include moral, religious, and spiritual aspects; sharing housing accommodations, and the likelihood of inheriting a portion of the patient’s assets based on unspoken rules and informal arrangements in the family, and wicked and immoral aspects. These findings can inform future efforts in enhancing the experiences of caregivers of PWD, and subsequently, the quality of care these patients receive. It further suggests that family members, members of a religious and spiritual organization, as well as social media, could play important roles in setting the stage.

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Alternatives to groundwater abstraction as a measure to stop land subsidence: a case study of Semarang, Indonesia

E3S Web of Conferences ◽

10.1051/e3sconf/201912501003 ◽

2019 ◽

Vol 125 ◽

pp. 01003 ◽

Cited By ~ 1

Author(s):

Wesley Beek ◽

Bart Letitre ◽

H. Hadiyanto ◽

S. Sudarno

Keyword(s):

Cost Benefit Analysis ◽

Cost Benefit ◽

Drinking Water Treatment ◽

Decision Makers ◽

Groundwater Abstraction ◽

Short Term ◽

Treatment Services

The Water as Leverage project aims to lay a blueprint for urban coastal areas around the world that are facing a variety of water-related issues. The blueprint is based upon three real case studies in Bangladesh, India and Indonesia. The case of Indonesia focuses on Semarang, a city that faces issues like flooding, increased water demand, and a lack of wastewater treatment. In this report I summarise the different techniques available to tackling these issues. Along with this I provide a cost-benefit analysis to support decision makers. For a short term it is recommended to produce industrial water from (polluted) surface water as a means to offer an alternative to groundwater abstraction. On a long term it is recommended to install additional wastewater and drinking water treatment services to facilitate better hygiene and a higher quality of life.

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Explosive Zunahme der häuslichen Krankenpflege bei Beatmeten und Tracheotomierten

DMW - Deutsche Medizinische Wochenschrift ◽

10.1055/a-0805-5284 ◽

2019 ◽

Vol 144 (04) ◽

pp. 282-285 ◽

Cited By ~ 2

Author(s):

Dieter Köhler

Keyword(s):

Home Care ◽

Outpatient Care ◽

Organizational Structures ◽

Interface Problems ◽

Discharge Management ◽

Additional Costs ◽

Long Term Ventilation ◽

Inpatient And Outpatient Care

AbstractSince 2005, invasive long-term ventilation in Germany has increased significantly from around 1000 to 20 000 patients in Germany. Due to complex home care, the health care system incurs additional costs of around 4 billion euros per year. In addition, in the last 2 – 3 years more tracheostomized patients have been discharged home without ventilation (usually after stroke), and they receive the same complex home care. These patients have almost never been given the chance of a professional weaning trial by a weaning center. They are discharged from hospitals directly into the care. As a result, the quality of care is significantly worse than traditional care with structured discharge management via a weaning center. The solutions are difficult to find due to the interface problems between inpatient and outpatient care and the different organizational structures with different delivery systems. Possible solutions are shown, but most of them require a change in the law.

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“Adaptative” User Interface for Expert Knowledge Validation and Evaluations Interpretation in an Asset Management Process

Volume 7: Operations, Applications and Components ◽

10.1115/pvp2007-26355 ◽

2007 ◽

Cited By ~ 1

Author(s):

P. Hai¨k ◽

S. Parfouru ◽

C. Bauby ◽

S. Mahe

Keyword(s):

User Interface ◽

Asset Management ◽

Expert Knowledge ◽

Decision Makers ◽

Technical Management ◽

Base Content ◽

Maintenance Policies ◽

And Performance

The long term management of a production asset raises several major issues among which rank the technical management of the plant, its economics and the fleet level perspective one has to adopt. Decision makers are therefore faced with the need to define long term policies (up to the end of asset operation) which take into account multiple criteria including safety (which is paramount) and performance. In this paper we first remind the reader of the EDF three-level methodology for asset management. We then focus on the knowledge model and on the software tools that implement this methodology in order to gather, preserve, share, maintain and exploit the expert knowledge needed for asset management and to allow decision makers to define, evaluate and analyze long term plant operation and maintenance policies. Lastly, as the quality of the processed plant level evaluations (operation & maintenance strategies are evaluated, at a plantlevel, through a set of technical and economic indicators) and their interpretation relies on the quality of the knowledge captured in the tools, we focus on the definition of a “adaptative” user interface — based on Electronic Structured Documents — that allows technical/strategic experts and decision makers to consult the useful pieces of knowledge in a context dependent way. Such an interface, which, in a near future, should be fully implemented in the tools will facilitate the validation of the knowledge-base content and the analysis of the processed results.

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