scholarly journals What Matters to Patients and Their Families During and After Critical Illness: A Qualitative Study

2021 ◽  
Vol 30 (1) ◽  
pp. 11-20
Author(s):  
Catherine L. Auriemma ◽  
Michael O. Harhay ◽  
Kimberley J. Haines ◽  
Frances K. Barg ◽  
Scott D. Halpern ◽  
...  
Keyword(s):  
Qualitative Content Analysis ◽  
Decision Rules ◽  
Family Members ◽  
Life Quality ◽  
Patient Comfort ◽  
Patient Centered ◽  
Surrogate Outcomes ◽  
Constant Pain ◽  
Centered Care ◽  
Family Centered

Background Despite increased emphasis on providing higher-quality patient- and family-centered care in the intensive care unit (ICU), there are no widely accepted definitions of such care in the ICU. Objectives To determine (1) aspects of care that patients and families valued during their ICU encounter, (2) outcomes that patients and families prioritized after hospital discharge, and (3) outcomes perceived as equivalent to or worse than death. Methods Semistructured interviews (n = 49) of former patients of an urban, academic medical ICU and their family members. Two investigators reviewed all transcripts line by line to identify key concepts. Codes were created and defined in a codebook with decision rules for their application and were analyzed using qualitative content analysis. Results Salient themes were identified and grouped into 2 major categories: (1) processes of care within the ICU— communication, patient comfort, and a sense that the medical team was “doing everything” (ie, providing exhaustive medical care) and (2) patient and surrogate outcomes after the ICU—survival, quality of life, physical function, and cognitive function. Several outcomes were deemed worse than death: severe cognitive/physical disability, dependence on medical machinery/equipment, and severe/constant pain. Conclusion Although survival was important, most participants qualified this preference. Simple measures of mortality rates may not represent patient- or family-centered outcomes in evaluations of ICU-based interventions, and new measures that incorporate functional outcomes and patients’ and family members’ views of life quality are necessary to promote patient-centered, evidence-based care.

scholarly journals Use of narrative as an awareness strategy for a Family-Centered Care model

2015 ◽  
Vol 36 (1) ◽  
pp. 98-103 ◽  
Author(s):  
Daniela Doulavince Amador ◽  
Fernanda Ribeiro Baptista Marques ◽  
Adriana Maria Duarte ◽  
Flavia Simphronio Balbino ◽  
Maria Magda Ferreira Gomes Balieiro ◽  
...  
Keyword(s):  
Nursing Students ◽  
Healthcare Professionals ◽  
Qualitative Content Analysis ◽  
Family Centered Care ◽  
Care Model ◽  
Family Narrative ◽  
The Family ◽  
Centered Care ◽  
Analytical Category ◽  
Family Centered

The aim of this study was to comprehend the meaning of using illness narratives to raise awareness among nursing students and healthcare professionals toward the family-centred care model. The adopted methodological framework was Qualitative Content Analysis based on the philosophy of Family-Centered Care. Data were collected by means of assessments provided by 29 participants at an event in 2013, in São Paulo. The resulting analytical category was "transformed by the family narrative", which consisted of three sub-categories: Favours a better understanding of the family's experience; facilitates learning of family issues; and triggers thought on family-centered care. Results showed that hearing the family narrative on experiences with illness and hospitalization raises awareness among nursing students and healthcare professionals toward the family-centered care model, and facilitates learning of this model of care.

Best Practice for Family-Centered Health Care

2017 ◽  
Author(s):  
Joanna Sturhahn Stratton ◽  
Katherine Buck ◽  
Allison M. Heru
Keyword(s):  
Health Care ◽  
Family Involvement ◽  
Best Practice ◽  
Model Of Care ◽  
Patient Centered ◽  
Step Model ◽  
Essential Components ◽  
The Family ◽  
Centered Care ◽  
Family Centered

The patient-centered medical home is a strong model of care that can be improved by harnessing the power of the patient’s family. This chapter highlights a three-step model of family involvement in patient care: (1) family inclusion, (2) family education and support, and (3) family systems therapy. The model is grounded in evidence-based research and incorporates the essential components of integrated care. A clinical case example illustrates how to involve the family in a stepwise progression. This model of family-centered care is applicable in any health care setting.

Conceptions of Family-Centered Medical Decisionmaking and Their Difficulties

2003 ◽  
Vol 12 (2) ◽  
pp. 196-200 ◽  
Author(s):  
INSOO HYUN
Keyword(s):  
Patient Autonomy ◽  
Family Members ◽  
Patient Centered ◽  
Medical Decisions ◽  
Competent Patient ◽  
Legitimate Interest ◽  
The Family ◽  
Related Line ◽  
Family Centered ◽  
Decisional Authority

Over the past decade or so, the predominant patient-centered ethos in American bioethics has come under attack by critics who claim that it is morally deficient in certain respects, particularly when viewed in the context of acute-care decisionmaking. One line of criticism has been that the current ethic of patient autonomy gives an individual competent patient far too much decisional authority over the terms of his own treatment so that the patient is at complete liberty to neglect the ways in which his medical decisions can drastically and negatively affect the lives of other family members. Given that family members must help shoulder the financial, emotional, and rehabilitative burdens involved in the patient's care, it has been argued that they too have a legitimate interest in choosing what sort of medical treatment the patient eventually receives. Another closely related line of criticism is that the prevailing focus on patient autonomy gives short shrift to the moral significance of the family as a genuine community. Echoing a view of the person advanced by most communitarian political theorists, some commentators have argued that the patient comes to the clinic so thoroughly embedded in a complex web of familial relationships and obligations that it does not make sense to identify him as the only person in the family to make decisions about treatment.

scholarly journals Family Centered Care: A Literature Review

2021 ◽  
Author(s):  
Ari Damayanti Wahyuningrum
Keyword(s):  
Literature Review ◽  
Family Members ◽  
Narrative Form ◽  
Family Centered Care ◽  
Member Care ◽  
The Family ◽  
Literature Reviews ◽  
Centered Care ◽  
Family Centered

Collaborative action between families and health professionals, in this case nurses, doctors, nutritionists, pharmacies in forming harmonious support is the philosophy of family centered nursing care which aims to involve families as the main focus in care. The aim of this literature review is to identify family-centered family member care: a literatu review. This language method uses literature reviews which are summaries of 10 articles in the publication years of 2020-2021 on search 4 databased electronic searches containing namely Scopus, ProQuest, Pubmed, and Scient Direct. This review used prisms. The eligibility of these studies were from its title, abstract, research methodology, results and discussion. The results of the review were presented in narrative form. The results of a review of 10 articles found that the form family centered care Conclusion: The family is considered a partner in the care of other family members. The concept of family centered care is a philosophy in nursing where the role of the family is very important in caring for family members who are sick.

scholarly journals The conceptualization of family care during critical illness in KwaZulu-Natal, South Africa

2017 ◽  
Vol 22 ◽  
Author(s):  
J. De Beer ◽  
P. Brysiewicz
Keyword(s):  
Critical Illness ◽  
Family Members ◽  
Family Care ◽  
Family Centered Care ◽  
Loved One ◽  
Individual Interviews ◽  
Grounded Theory Research ◽  
Centered Care ◽  
Analyse Data ◽  
Family Centered

Introduction: In recent years there has been a movement to promote patients as partners in their care; however this may not always be possible as in the case of critically ill patients, who are often sedated and mechanically ventilated. This results in family members being involved in the care of the patient. To date, this type of care has been represented by three dominant theoretical conceptualizations and frameworks one of which is family centered care; however there is a lack of consensus on the definition of family centered care. Hence the objective of this study was to explore the meaning of family care within a South African context.Methodology: This study adopted a qualitative approach and a grounded theory research design by Strauss and Corbin (1990). Participants from two hospitals: one private and one public were selected to participate in the study. There was a total of 31 participants (family members, intensive care nurses and doctors) who volunteered to participate in the study.Data collection included in-depth individual interviews. Open, axial and selective coding was conducted to analyse data. Nvivo data analysis software was used to assist with the data analysis.Findings: The findings of this study revealed that family care is conceptualized as togetherness, partnership, respect and dignity.Conclusion: During a critical illness, patients' families fulfil an additional essential role for patients who may be unconscious or unable to communicate or make decisions. FMs not only provide vital support to their loved one, but also become the “voice” of the patient.

scholarly journals The Learners' Perceptions Survey—Primary Care: Assessing Resident Perceptions of Internal Medicine Continuity Clinics and Patient-Centered Care

2013 ◽  
Vol 5 (4) ◽  
pp. 587-593 ◽  
Author(s):  
John M. Byrne ◽  
Barbara K. Chang ◽  
Stuart C. Gilman ◽  
Sheri A. Keitz ◽  
Catherine P. Kaminetzky ◽  
...  
Keyword(s):  
Internal Medicine ◽  
Primary Care ◽  
Health Care Professionals ◽  
Clinical Training ◽  
Patient Centered Care ◽  
Family Centered Care ◽  
Patient Centered ◽  
Centered Care ◽  
The University ◽  
Family Centered

Abstract Background In 2010, the Department of Veterans Affairs (VA) implemented a national patient-centered care initiative that organized primary care into interdisciplinary teams of health care professionals to provide patient-centered, continuous, and coordinated care. Objective We assessed the discriminate validity of the Learners' Perceptions Survey—Primary Care (LPS-PC), a tool designed to measure residents' perceptions about their primary and patient-centered care experiences. Methods Between October 2010 and June 2011, the LPS-PC was administered to Loma Linda University Medical Center internal medicine residents assigned to continuity clinics at the VA Loma Linda Healthcare System (VALLHCS), a university setting, or the county hospital. Adjusted differences in satisfaction ratings across settings and over domains (patient- and family-centered care, faculty and preceptors, learning, clinical, work and physical environments, and personal experience) were computed using a generalized linear model. Results Our response rate was 86% (77 of 90). Residents were more satisfied with patient- and family-centered care at the VALLHCS than at either the university or county (P < .001). However, faculty and preceptors (odds ratio [OR]  =  1.53), physical (OR  =  1.29), and learning (OR  =  1.28) environments had more impact on overall resident satisfaction than patient- and family-centered care (OR  =  1.08). Conclusions The LPS-PC demonstrated discriminate validity to assess residents' perceptions of their patient-centered clinical training experience across outpatient primary care settings at an internal medicine residency program. The largest difference in scores was the patient- and family-centered care domain, in which residents rated the VALLHCS much higher than the university or county sites.

The Dying Patient in the Intensive Care Unit: Assisting the Family in Crisis

1993 ◽  
Vol 4 (3) ◽  
pp. 550-557
Author(s):  
Brian E. Mendyka
Keyword(s):  
Practical Experience ◽  
Positive Outcomes ◽  
Patient Centered ◽  
The Core ◽  
Clinical Events ◽  
The Family ◽  
Centered Care ◽  
Family Centered ◽  
Dying Patient

Critically ill patients belong to larger phenomenologic systems, their families. What affects one member affects other system members. Nursing care requires meticulous observation and assessment of family concerns, understanding of clinical events, and practical experience to achieve positive outcomes even if a death occurs. It seems easy to dismiss the family from the clinical and technical matters of the critical care unit, especially when much nursing energy goes into operating peripheral machinery, performing tasks, and pursuing ever-changing patient-centered goals. The following case study attempts to redefine and redirect the focus of what “patient-centered” means to include the nurse, the patient, and the family in the meaning of the core of family-centered care

Promoting Patient and Family Engagement by Implementing Therapeutic Music during Hospitalization

2020 ◽  
Vol 12 (1) ◽  
pp. 55
Author(s):  
Ruth Kleinpell ◽  
Lynn Westhoff ◽  
Lauren M Ochoa ◽  
Kelly Maguigan ◽  
Angela Larson
Keyword(s):  
Family Engagement ◽  
Family Members ◽  
Hospital Setting ◽  
Daily Practice ◽  
Lessons Learned ◽  
Healthcare Team ◽  
Beneficial Effects ◽  
Centered Care ◽  
Health Studies ◽  
Family Centered

It is well recognized that music can have an impact on health.  Studies targeting oncology, palliative care, hospice, and post cardiac surgery patients have demonstrated beneficial effects of music on heart rate, blood pressure, oxygen saturation, cortisol, pain, and anxiety levels. However, despite the well-known effects, therapeutic music is rarely observed in routine daily practice in the hospital setting. As part of a national collaborative targeting patient and family engagement in the intensive care unit (ICU), 63 teams implemented initiatives including open visitation, integrating families on rounds, establishing a patient and family advisory committee, using patient and family diaries, and music in the ICU, among others. Results from the ICU music initiative demonstrated that family members felt that music in the ICU was helpful, gave them more confidence in the healthcare team, impacted care of patients in the ICU, and helped ease their worry for their family member. Clinicians reported the following findings: that communication with family members improved since having music in the ICU, that patient care had improved, and that music had been beneficial for patients, families and ICU staff.  This article reviews strategies for implementing therapeutic music during hospitalization, highlighting lessons learned from the national collaborative.  Keywords: patient and family engagement, therapeutic music, patient and family centered care, music in the ICUmultilingual abstract | mmd.iammonline.com 

scholarly journals The Effect of FAmily-CEntered (FACE®) Pediatric Advanced Care Planning Intervention on Family Anxiety: A Randomized Controlled Clinical Trial for Adolescents With HIV and Their Families

2020 ◽  
Vol 26 (4) ◽  
pp. 315-326
Author(s):  
Christopher J. Lin ◽  
Yao I. Cheng ◽  
Patricia A. Garvie ◽  
Lawrence J. D’Angelo ◽  
Jichuan Wang ◽  
...  
Keyword(s):  
Depressive Symptoms ◽  
Controlled Trial ◽  
Family Members ◽  
Controlled Clinical Trial ◽  
Care Planning ◽  
Patient Centered ◽  
Randomized Controlled ◽  
Advance Care ◽  
Hiv Continuum Of Care ◽  
Family Centered

Clinicians fear pediatric advance care planning (pACP) for adolescents is too distressing for families. Multisite longitudinal randomized controlled trial of adolescents with HIV tested the effect of FAmily-CEntered (FACE®) pACP intervention on families’ anxiety and depression. One hundred five adolescent/family dyads were randomized to FACE® ( n = 54 dyads) or control ( n = 51 dyads). Families were 90% African American, 37% HIV-positive, and 22% less than high school educated. Families reported lower anxiety 3 months post-FACE® intervention than control (β = −4.71, 95% confidence interval [CI] = [−8.20, −1.23], p = .008). Male family members were less anxious than female family members (β = −4.55, 95% CI = [−6.96, −2.138], p ≤ .001). Family members living with HIV reported greater depressive symptoms than HIV-uninfected families (β = 3.32, 95% CI = [0.254, 6.38], p = .034). Clinicians can be assured this structured, facilitated FACE® pACP model minimized family anxiety without increasing depressive symptoms. Adolescent/family dyads should be invited to have access to, and provision of, evidence-based pACP as part of patient-centered/family-supported care in the HIV continuum of care.

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