The Partner Caregiver

2020 ◽  
pp. 151-174
Author(s):  
Elaine Wittenberg ◽  
Joy V. Goldsmith ◽  
Sandra L. Ragan ◽  
Terri Ann Parnell
Keyword(s):  
Decision Making ◽  
Chronic Illness ◽  
Family Members ◽  
Care Recipient ◽  
Adjustment Process ◽  
Healthcare Team ◽  
Family Learning ◽  
Asking Questions ◽  
Family Harmony ◽  
Collaborative Efforts

A LOW/WARM conformity pattern coupled with a HIGH and WARM conversation pattern produces positive family learning for the Partner caregiver, with family members working on their own to adapt, cooperate with each other, and engage in emotions associated with caregiving. Partner caregivers present to others as supporter of the experiences of the care recipient. Caregiving is an emotionally intense experience for the Partner caregiver, who becomes entrenched in the adjustment process of chronic illness. Partner caregivers perceive their role to involve (a) support care recipient decision-making by trusting doctors and honoring his or her decisions; (b) advocating on behalf of care recipient in communication with doctors and the healthcare team, including asking questions and finding out more information about prognosis and future; and (c) emphasizing family harmony through collaborative efforts that involve taking time to converse as a family.

RAISE IT UP!! Youth Arts and Awareness

2017 ◽  
Vol 4 (1) ◽  
Author(s):  
Natasha Thomas-Jackson
Keyword(s):  
Decision Making ◽  
Social Justice ◽  
Young People ◽  
Social Transformation ◽  
Family Members ◽  
Community Leaders ◽  
Youth Engagement ◽  
Literary Arts ◽  
Systemic Oppression ◽  
Creative Self

RAISE IT UP! Youth Arts and Awareness (RIU) is an organization that promotes youth engagement, expression, and empowerment through the use of performance and literary arts and social justice activism. We envision a world where youth are fully recognized, valued, and supported as artist-activists and emerging thought leaders, working to create a world that is just, intersectional, and inclusive. Two fundamental tenets shape RIU’s policies, practices, and pedagogy. The first is that creative self-expression and culture making are powerful tools for personal and social transformation. The second is that social justice is truly possible only if and when we are willing to have transparent and authentic conversations about the oppression children experience at the hands of the adults in their lives. We are committed to amplifying youth voices and leadership and building cross-generational solidarity among people of all ages, particularly those impacted by marginalization. Though RIU is focused on and driven by the youth, a large part of our work includes helping adult family members, educators, and community leaders understand the ways in which systemic oppression shapes our perceptions of and interactions with the young people in our homes, neighborhoods, institutions, and decision-making bodies.

scholarly journals Conversations About Death and Dying, End-of-Life Care Plans and Preferences Between Aging Parents and Adult Children

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-417
Author(s):  
Hyo Jung Lee ◽  
Jacobbina Jin Wen Ng
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Adult Children ◽  
End Of Life Care ◽  
Death And Dying ◽  
Family Members ◽  
Life Care ◽  
Joint Decision ◽  
Aging Parents ◽  
Care Plans

Abstract This study aims to investigate whether attitude and perception on late-life death and dying, end-of-life care plans and preferences could be better understood from current values shared between aging parents and their adult children in the multi-cultural city-bound country, Singapore. We are in the process of interviewing 20 aging parent-adult child dyads. Up to date, six semi-structured interviews were completed and transcribed. We performed Content analysis to analyze the transcripts. Preliminary findings showed that both aging parents and adult children rarely discussed this issue, although parents had their own plans or preferences. The major barriers against open conversations about death and dying of aging parents include: the perception of not-yet time to talk about this issue (without knowing when the right time is) and tendency to have conversations about death in tandem with finances, but not death itself. Although specific end-of-life care plans or arrangements were not thought out thoroughly, aging parents expressed a high level of trust and reliance on close family members’ decisions regarding their end-of-life care. They tended to agree on joint decision-making process within family, even though adult children had no or unmatched ideas about their aging parents’ end-of-life wishes. This did not necessarily align with previous findings in Western countries, underscoring individuals’ control over their own death and dying process. Open conversation within family, family-involved advance care planning, or joint decision-making processes may be warranted to promote quality of life and death in older Singaporeans and well-being of their family members of all ages.

Evaluations for New Healthcare Environment Commissioning and Operational Decision Making Using Simulation and Human Factors: A Case Study of an Interventional Trauma Operating Room

2021 ◽  
pp. 193758672199966
Author(s):  
Mirette Dubé ◽  
Jason Laberge ◽  
Elaine Sigalet ◽  
Jonas Shultz ◽  
Christine Vis ◽  
...  
Keyword(s):  
Decision Making ◽  
Human Factors ◽  
Operating Room ◽  
Healthcare Services ◽  
Healthcare Team ◽  
Healthcare Environment ◽  
New Process ◽  
Timely Access ◽  
Operational Decision Making

Purpose: The aim of this article is to provide a case study example of the preopening phase of an interventional trauma operating room (ITOR) using systems-focused simulation and human factor evaluations for healthcare environment commissioning. Background: Systems-focused simulation, underpinned by human factors science, is increasingly being used as a quality improvement tool to test and evaluate healthcare spaces with the stakeholders that use them. Purposeful real-to-life simulated events are rehearsed to allow healthcare teams opportunity to identify what is working well and what needs improvement within the work system such as tasks, environments, and processes that support the delivery of healthcare services. This project highlights salient evaluation objectives and methods used within the clinical commissioning phase of one of the first ITORs in Canada. Methods: A multistaged evaluation project to support clinical commissioning was facilitated engaging 24 stakeholder groups. Key evaluation objectives highlighted include the evaluation of two transport routes, switching of operating room (OR) tabletops, the use of the C-arm, and timely access to lead in the OR. Multiple evaluation methods were used including observation, debriefing, time-based metrics, distance wheel metrics, equipment adjustment counts, and other transport route considerations. Results: The evaluation resulted in several types of data that allowed for informed decision making for the most effective, efficient, and safest transport route for an exsanguinating trauma patient and healthcare team; improved efficiencies in use of the C-arm, significantly reduced the time to access lead; and uncovered a new process for switching OR tabletop due to safety threats identified.

scholarly journals The Process and Impact of Stakeholder Engagement in Developing a Pediatric Intensive Care Unit Communication and Decision-Making Intervention

2016 ◽  
Vol 3 (4) ◽  
pp. 108-118 ◽  
Author(s):  
Kelly N Michelson ◽  
Joel Frader ◽  
Lauren Sorce ◽  
Marla L Clayman ◽  
Stephen D Persell ◽  
...  
Keyword(s):  
Intensive Care Unit ◽  
Decision Making ◽  
Intensive Care ◽  
Pediatric Intensive Care Unit ◽  
Stakeholder Engagement ◽  
Pediatric Intensive Care ◽  
Healthcare Team ◽  
Team Members ◽  
Core Elements ◽  
Stakeholder Input

Stakeholder-developed interventions are needed to support pediatric intensive care unit (PICU) communication and decision-making. Few publications delineate methods and outcomes of stakeholder engagement in research. We describe the process and impact of stakeholder engagement on developing a PICU communication and decision-making support intervention. We also describe the resultant intervention. Stakeholders included parents of PICU patients, healthcare team members (HTMs), and research experts. Through a year-long iterative process, we involved 96 stakeholders in 25 meetings and 26 focus groups or interviews. Stakeholders adapted an adult navigator model by identifying core intervention elements and then determining how to operationalize those core elements in pediatrics. The stakeholder input led to PICU-specific refinements, such as supporting transitions after PICU discharge and including ancillary tools. The resultant intervention includes navigator involvement with parents and HTMs and navigator-guided use of ancillary tools. Subsequent research will test the feasibility and efficacy of our intervention.

scholarly journals Development and validation of the Family Decision-Making Self-Efficacy Scale

2009 ◽  
Vol 7 (3) ◽  
pp. 315-321 ◽  
Author(s):  
Marie T. Nolan ◽  
Mark T. Hughes ◽  
Joan Kub ◽  
Peter B. Terry ◽  
Alan Astrow ◽  
...  
Keyword(s):  
Decision Making ◽  
Self Efficacy ◽  
Family Members ◽  
Terminally Ill ◽  
Loved One ◽  
The Family ◽  
Family Decision ◽  
Patient Scenario ◽  
Family Decision Making ◽  
Test Retest Reliability

AbstractObjective:Several studies have reported high levels of distress in family members who have made health care decisions for loved ones at the end of life. A method is needed to assess the readiness of family members to take on this important role. Therefore, the purpose of this study was to develop and validate a scale to measure family member confidence in making decisions with (conscious patient scenario) and for (unconscious patient scenario) a terminally ill loved one.Methods:On the basis of a survey of family members of patients with amyotrophic lateral sclerosis (ALS) enriched by in-depth interviews guided by Self-Efficacy Theory, we developed six themes within family decision making self-efficacy. We then created items reflecting these themes that were refined by a panel of end-of-life research experts. With 30 family members of patients in an outpatient ALS and a pancreatic cancer clinic, we tested the tool for internal consistency using Cronbach's alpha and for consistency from one administration to another using the test–retest reliability assessment in a subset of 10 family members. Items with item to total scale score correlations of less than .40 were eliminated.Results:A 26-item scale with two 13-item scenarios resulted, measuring family self-efficacy in decision making for a conscious or unconscious patient with a Cronbach's alphas of .91 and .95, respectively. Test–retest reliability was r = .96, p = .002 in the conscious senario and r = .92, p = .009 in the unconscious scenario.Significance of results:The Family Decision-Making Self-Efficacy Scale is valid, reliable, and easily completed in the clinic setting. It may be used in research and clinical care to assess the confidence of family members in their ability to make decisions with or for a terminally ill loved one.

End-of-life decision making in critical illness: Perspectives of Asian parents

2021 ◽  
pp. 1-10
Author(s):  
Kristy Xinghan Fu ◽  
Yee Keow Chiong ◽  
Nicola Ngiam
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Tertiary Care ◽  
Asian Population ◽  
Emergency Department Visits ◽  
Case Vignette ◽  
Healthcare Team ◽  
Care Hospital ◽  
Case Vignettes ◽  
End Of Life Decision

Abstract Objective To explore parents’ perspectives regarding end-of-life (EOL) decisions, factors and possible barriers that influence the EOL decision making process, and to understand parental preferences for communication about EOL care in an Asian population. Method A prospective questionnaire cohort study conducted in a university-based tertiary care hospital. 30 parents of children who had been admitted to general pediatric wards for acute ailments and/or were being followed up in general pediatric outpatient clinics after inpatient admissions or emergency department visits completed 30 interviewer-administered questionnaires. With the first 10 completed questionnaires, we sought feedback on the design of the four case vignettes and related questions. Responses to specific questions related to each case vignette were rated on a Likert scale. Results The majority of parents were able to comprehend and identify with the issues in the case vignettes, which allowed them to respond appropriately. Parents tended to avoid active withdrawal or withholding of life-sustaining treatment. The top three priorities for parents making EOL decisions for their children were: the chance of improvement, the presence of pain or discomfort, and information provided by healthcare staff. Parents reported that they would prefer to know immediately if their child is at risk of dying; they also preferred to get as much information as possible from the healthcare team and thought that meeting with the healthcare team before making EOL decisions was pivotal. Significance of results Parents place highest priorities on their child's likelihood of improvement, perception of their child's pain, and information provided by healthcare professionals in making EOL decisions.

基於儒家家庭本位思想的知情同意原則的思考

2013 ◽  
Vol 11 (1) ◽  
pp. 33-44
Author(s):  
Xiangjin KONG ◽  
Mingjie ZHAO
Keyword(s):  
Decision Making ◽  
Filial Piety ◽  
Moral Virtue ◽  
Family Members ◽  
Confucian Ethics ◽  
Medical Decision ◽  
Individual Autonomy ◽  
The Family ◽  
Family Decision ◽  
Opinion Polls

LANGUAGE NOTE | Document text in Chinese; abstract also in English.在具有家庭主義特徵的中國社會文化語境下，儒家家庭本位思想對病人知情同意權的影響是客觀實在。以自由主義和個人主義為理論基礎的個人自主知情同意原則要想在中國本土的醫療實踐中發揮應有作用，突顯家庭在知情同意過程中的主導地位是重要前提。在中國的醫療實踐中，知情同意的模式必須融入中國儒家家庭本位思想，才能更好地發揮其作用。Opinion polls released recently show that the majority of people in China today think that informed consent in medical practice is necessary, with more than half favoring family decision making over individual, autonomous patient decision making. Based on these opinion polls, this essay argues that the liberalism and liberal individualism that emphasize individual autonomy do not square with the Confucian tradition.The essay submits that the “family decision” model is designed to embody Confucian family ethics and maximize the benefit of family involvement in medical decision making. The family model includes both the patient and his or her close family members in the decision making process. The Confucian ethics of humanness (ren) – the highest moral virtue – and filial piety (xiao) – the foundation of all moral virtue – support family as the most appropriate authority for medical decisions. Further, the essay explores how the family as a unit is better positioned to work with the physician at critical moments to protect the interests of the patient. This means that the family, not the patient, is in authority, and that in some cases, it is acceptable for family members to hide “medical information” from the patient with the cooperation of the physician. The essay concludes that the family is, and should be treated as, a significant moral participant in medical decision making.DOWNLOAD HISTORY | This article has been downloaded 99 times in Digital Commons before migrating into this platform.

Family Members' Perceptions of Adolescents' Influence in Family Decision Making

1989 ◽  
Vol 15 (4) ◽  
pp. 482 ◽  
Author(s):  
Ellen R. Foxman ◽  
Patriya S. Tansuhaj ◽  
Karin M. Ekstrom
Keyword(s):  
Decision Making ◽  
Family Members ◽  
Family Decision ◽  
Family Decision Making

scholarly journals Parent-child collaboration in health care decision making: perspectives of young people with chronic illness

2021 ◽  
Author(s):  
Elana Jackson
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Chronic Illness ◽  
Young People ◽  
Organ Transplant ◽  
Chronic Illnesses ◽  
Structured Interviews ◽  
Health Care Decision ◽  
Role Of Parents ◽  
Care Decision

This study explores the perspectives of young people with chronic illness on their participation in health care discussions and decision making, with a specific focus on the role of parents in facilitating participation. Semi-structured interviews were conducted with 26 participants between the ages of 5 and 18. Participants were recruited from inpatient units at a pediatric hospital. A range of chronic illnesses were represented among members of the sample, including kidney failure, Crohn’s disease, organ transplant, and sickle cell anemia. Following data collection, a focused analysis was conducted of participants’ statements related to parent involvement in the health care decision making process. Salient themes that emerged from analysis of the data reveal a complex and bidirectional process in which young people and parents negotiate children’s participation in making decisions related to their health care. Based on the findings, a collaborative-contextual model of decision making is proposed.

scholarly journals Shared decision making for the initiation and continuation of dialysis: a proposal from the Japanese Society for Dialysis Therapy

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Kazuyoshi Okada ◽  
Ken Tsuchiya ◽  
Ken Sakai ◽  
Takahiro Kuragano ◽  
Akiko Uchida ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Japanese Society ◽  
Healthcare Management ◽  
Maintenance Hemodialysis ◽  
Decision Making Process ◽  
Healthcare Team ◽  
Shared Decision ◽  
Dialysis Therapy ◽  
Terminal Stage

Abstract Background In Japan, forgoing life-sustaining treatment to respect the will of patients at the terminal stage is not stipulated by law. According to the Guidelines for the Decision-Making Process in Terminal-Stage Healthcare published by the Ministry of Health, Labor and Welfare in 2007, the Japanese Society for Dialysis Therapy (JSDT) developed a proposal that was limited to patients at the terminal stage and did not explicitly cover patients with dementia. This proposal for the shared decision-making process regarding the initiation and continuation of maintenance hemodialysis was published in 2014. Methods and results In response to changes in social conditions, the JSDT revised the proposal in 2020 to provide guidance for the process by which the healthcare team can provide the best healthcare management and care with respect to the patient's will through advance care planning and shared decision making. For all patients with end-stage kidney disease, including those at the nonterminal stage and those with dementia, the decision-making process includes conservative kidney management. Conclusions The proposal is based on consensus rather than evidence-based clinical practice guidelines. The healthcare team is therefore not guaranteed to be legally exempt if the patient dies after the policies in the proposal are implemented and must respond appropriately at the discretion of each institution.

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