Patient Dignity Research Articles

The Effect of Post-discharge Telephone Follow-Up on the Inherent Dignity of Patients with Heart Failure

The Effect of Post-discharge Telephone Follow-Up on the Inherent Dignity of Patients with Heart Failure

ES20.03 Fatigue

ES20.03 Fatigue

Proposal for the Universalization of Humanized Care in Health Centers: Oncological Individuals

Introduction: Cancer is the main public health problem in the world and is already among the top four causes of death before the age of 70 in most countries. In this context, the interest in quality in the care of cancer services is evident. Because of this, several techniques and methods for this measurement are beginning to emerge, but so far there is no valid and reliable methodological strategy of consensus among researchers, except for the HUMAS and QUALISUS (Brazil) scale. Objective: To present the main strategies and criteria to propose a standard model for the validation of humanized care of oncological individuals from Brazil to the world, based on HUMAS international and QUALISUS in Brazil. Methods: The present study followed a review model of the main national and international public health legislation from Brazil (QUALISUS), WHO (World Health Organization), Health Professional Humanization Scale (HUMAS), and scientific articles. Results: Due to the automation of care, the concept of humanization of care has been increasingly discussed in the scientific literature. Respect for the patient's dignity, uniqueness, individuality, and humanity, as well as adequate working conditions and sufficient human and material resources, are the key elements of the humanization of care that were highlighted in this study's proposal. The factors that can contribute the most to the humanization process are the affection in the service, the friendliness and the smile, and the ones that can make it more difficult are the bad mood, the noise, and the punctual non-attendance. Conclusion: This study presented the main strategies and criteria to propose a standard model for the validation of humanized care of oncological individuals from Brazil to the world, strongly pointing out that hospital humanization must be experienced and felt by all who work in the hospital and need to reflect on the care offered to clients and their families.

Differing viewpoints around healthcare professions' education research priorities: A Q-methodology approach.

Recently, due to scarce resources and the need to provide an evidence-base for healthcare professions' education (HPE), HPE research centres internationally have turned to identifying priorities for their research efforts. Engaging a range of stakeholders in research priority setting exercises has been posited as one way to address the issues around reducing researcher bias and increasing social accountability. However, assigning individuals to single a priori stakeholder groups is complex, with previous research overlooking cross-category membership and agreement between individuals across groups. Further, analyses have pitched stakeholder groups against one another in an attempt to understand who prioritises what, and often fails to grasp rationales underlying priorities. A deeper understanding of who prioritises what research areas and why is required to consider applicability of results across contexts and deepen social accountability and transferability. A web-based Q-methodological approach with n=91 participants (who) from ten pre-classified stakeholder groups was employed with post-sort interviews (why). Sixty-seven Q-set items (Chinese/English languages) were developed from previous research (what). Participants were mainly from Taiwan, although international researchers were included. Q-sorting was undertakenin groups or individually, followed by post-sort interviews. Eighty-six participants' Q-sorts were included in the final analysis. Intercorrelations among Q-sorts were factor-analysed (Centroid method) and rotated analytically (Varimax method). Interviews were thematically analysed. Six Viewpoints with eigenvalues exceeding 1 were identified (range = 3.55-10.34; 42% total variance; 35/67 topics), mapping high/low priorities for research foci: Workplace teaching and learning; Patient dignity and healthcare safety; Professionalism and healthcare professionals' development; Medical ethics and moral development; Healthcare professionals' retention and success; Preparing for clinical practice. Eighteen rationales for prioritisation were identified: impact, organisational culture and deficit of educators/practitioners were most highly cited. Each Viewpoint, held by multiple stakeholders, comprised a unique set of topic-groupings, target study participants, beneficiaries and rationales. The two most prolific Viewpoints represent how different stakeholder groups highlight key complementary perspectives of healthcare professions' education in the workplace (efficacy of teaching/learning practices, application of knowledge/values). By illuminating the detail around each Viewpoint, and presenting an holistic description of the who-what-why in research priority setting, others wishing to undertake such an exercise can more easily identify how stakeholder Viewpoints and their epistemic beliefs can help shape healthcare professions' research agendas more generally.

Death Education: An Educational Approach to Death and Dying

This paper explains the importance of education in the dying process and outlines a full curriculum to create a society more prepared for difficult end-of-life situations. This course is structured to be taught as a high school elective course in which the principles and approaches to death and dying are discussed in depth. For a high school student, death can be approached from diverse perspectives. Within these perspectives, there are several vital topics to understand in order to ensure a student’s proper education on death. The complexity of death is represented by the titles of the nine chapters of the course. Chapter One, titled “Definition of Death, Consciousness, and Persistent Vegetative State,” highlights the development of death throughout history, the general consensus about death today, and the morality of different levels of treatment for dying patients. Chapter Two, “End Stage Medical Conditions,” outlines the most common end-of-life health conditions along with their symptoms and possible treatments. In Chapter Three, titled “Bad News and Communication,” the course introduces patient-physician communication, the current shortcomings of medical education in this vital area, and the possible protocols for effectively conveying both truth and support to a patient. Chapter Four, labelled “Do Not Resuscitate Orders, Living Wills/Advance Directives, and Durable Powers of Attorney for Health Care,” presents the appropriate options available to prepare for a patient’s inability to make informed decisions autonomously. Chapter Five, “Ordinary vs. Extraordinary Means: The Issue of Tube Feedings,” discusses the distinction between different types of end-of-life treatment and when certain treatments can be morally excused. Chapter Six, titled “Palliative Care and Hospice: A Paradigm for End-of-Life Care,” gives effective options for terminally ill patients that ensure care is never stopped and a patient's dignity is never lost. Chapter Seven, “Pain Management,” highlights the difficulties and recommendations for establishing proper pain management. Chapter Eight, entitled “Medical Futility,” presents the debate surrounding patient autonomy with physician’s beneficence and nonmaleficence, forgoing and requesting treatments, and the values associated with this issue. Finally Chapter Nine, titled “Spirituality and End of Life Care,” emphasizes the inevitable linkage between healthcare, death, and spirituality and the benefits of proper support for a patient. This paper also highlights the ethical implications surrounding the death and dying process. The importance of this subject lies within the death-denying reality that society is today in which death is avoided and human dignity is increasingly sacrificed as a result. Discussions and education among society’s youngest adults can improve general knowledge about the dying process and lead to overall better preparation for handling this inevitable stage of humanity.

Dignity of informal caregivers of migrant patients in the last phase of life: a qualitative study

BackgroundA key aim of palliative care is to improve the quality of life of patients and their families. To help ensure quality of life for the families of patients with migrant backgrounds, this study sought insights into the dignity of informal caregivers in migrant communities. This could improve understanding of family-centered care for migrant patients.MethodsTwenty semi-structured interviews with informal caregivers of Turkish, Moroccan, or Surinamese background living in the Netherlands were analyzed thematically.ResultsThe dignity of the patient and that of their informal caregivers were found to be strongly interrelated. Most important for the dignity of caregivers was ensuring good care for their patients and preserving the patients’ dignity. Ensuring good care involved advocating for good and dignified care and for satisfaction of a patient’s wishes. For many informal caregivers, it also included delivering care to the patient by themselves or together with other family members, despite having to give up part of their own lives. Providing care themselves was part of maintaining a good relationship with the patient; the care was to cater to the patient’s preferences and help preserve the patient’s dignity, and it could be accompanied by valuable aspects such as times for good conversations. Positive interaction between an informal caregiver and a patient positively influenced the informal caregiver’s dignity. Informal caregiver and patient dignity were often compromised simultaneously; when informal caregivers felt healthcare professionals were undermining a patient’s dignity, their own dignity suffered. According to informal caregivers, healthcare professionals can help them preserve dignity by taking seriously their advice about the patient, keeping them informed about the prognosis of the disease and of the patient, and dealing respectfully with differences in values at the end of life.ConclusionThe dignity of migrant patients’ informal caregivers in the last phase of a patient’s life is closely entwined with ensuring good care and dignity for the patient. Healthcare professionals can strengthen the dignity of informal caregivers by supporting their caregiving role.

Developing a nursing protocol for the remote verification of an expected death

Homecare nurses play an important role in end-of-life care. A protocol is needed for the remote verification of expected deaths using information and communication technologies (ICT), that is consistent with Japanese guidelines. To clarify the processes that nurses use to verify deaths and to develop a tentative nursing protocol for verifying expected deaths, using home-based ICT. Using literature and semi-structured interviews, a tentative nursing protocol was developed for verifying expected deaths using home-based ICT. To protect the dignity of patients and their families, it is important that their understanding and consent is provided for the remote verification of expected deaths. Furthermore, the up-to-date legal and ethical responsibilities of nurses should be discussed regarding the verification of a patient's death to provide the best care for the patients and families when implementing the Death Certification Using Information and Communication Technology (DCUICT). This suggested protocol offers a framework for a new delivery of nursing care. It provides guidance for homecare nurses organising the care processes and nursing roles of DCUICT. Further revisions to this protocol must incorporate the specific requirement for the verification of nurses.

Research on the Medical English Teaching under the Condition of Medical Literacy Based on Computer-aided Technology

Medical staff must respect the life, personality, dignity and rights of patients, which is a concentrated embodiment of the connotation of medical quality. In the context of information technology, there are more and more medical disputes. Therefore, it is an urgent problem to cultivate the medical literacy of medical staff. Computer-aided medical English teaching has become a basic course for medical students. It is necessary to improve the medical literacy of medical students in the computer-assisted medical English teaching in colleges and universities, which has become the research direction of diversified teaching content. First, this article analyzes the necessity of training and improving medical students’ medical literacy. Then, the problems existing in English teaching are put forward. Finally, some suggestions were made[1].

The role of advance care planning and palliative care in new york city during COVID-19 pandemic

New York City faced an explosive spread of Coronavirus disease 2019 (COVID-19), causing the city's death toll to spike owing to the high virulence of COVID-19. The health care system was on the verge of collapse. Advance care planning (ACP), informed assent, and palliative care played significant roles in supporting patient self-determination and dignity, facilitating decision making, and promoting better care. The importance of these strategies was revisited. Learning from the COVID-19 pandemic in New York City, it is anticipated that several approaches such as ACP and palliative intervention may attract more attention and become increasingly essential to the healthcare system in Japan.

Korean Version of the Patient Dignity Inventory: Translation and Validation in Patients With Advanced Cancer

ContextThe goal of palliative care is to maximize the quality of life and thus maintain the dignity of patients facing problems associated with a life-threatening illness. The Patient Dignity Inventory (PDI) is an instrument used to measure various sources of distress that can impact patients’ sense of dignity at the end of life. ObjectivesWe aimed to obtain a Korean translation of the PDI (PDI-K) and evaluate its psychometric properties in patients with advanced cancer. MethodsTranslation and cultural adaptation of the PDI were performed to obtain the Korean version. In a sample of 131 inpatients and outpatients with advanced cancer, psychometric properties, including factor structure, internal consistency, and concurrent validity, were examined. Concurrent validity was evaluated using the Edmonton Symptom Assessment System, the Hospital Anxiety and Depression Scale, and the 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being. ResultsCronbach's α for the PDI-K was 0.96. Four factors were identified by exploratory factor analysis, accounting for 68.7% of the overall variance: Dependency and Physical Symptoms, Psychological Distress, Existential Distress, and SocialSupport. Concurrent validity was confirmed by significant correlations between PDI-K and Edmonton Symptom Assessment System (r = 0.40 to 0.59, P < 0.001), Hospital Anxiety and Depression Scale (r = 0.78 to 0.81, P < 0.001), and Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (r = −0.32 to −0.57, P < 0.001). ConclusionOur findings indicate that the PDI-K is a valid and reliable instrument to measure dignity-related distress in patients with advanced cancer. This tool provides a four-factor Korean language alternative to the PDI.

Hope in end-of-life cancer patients: A cross-sectional analysis.

Hope promotes oncology patients' adaptability to their illness, regardless of the stage of cancer. This study aimed to determine the prevalence of hope in a sample of end-of-life patients and to investigate the possible relationships between hope and a set of clinical and psychosocial measures. Three hundred and fifty end-of-life oncology patients, with a presumed life expectancy of 4 months or less and a Karnofsky Performance Status (KPS) of 50 or lower, were administered the Italian validated versions of a set of rating scales during their first consultation with a psychologist. This included the Herth Hope Index (HHI), Patient Dignity Inventory (PDI), Demoralization Scale (DS), Hospital Anxiety and Depression Scale (HADS), Functional Assessment of Chronic Illness Therapy (FACIT-Sp), and the Visual Analogue Scale for pain (VAS). On average, the sample scored between moderate and high on the HHI and the average level of spirituality was high. However, most patients had clinically relevant anxious and depressive symptomatology and high levels of demoralization. Other than the pain scale, the total HHI score significantly correlated with the total scores of all rating scales and their subscales, as well as with the measure of personal religious practice. The "Meaning" FACIT-Sp subscale was found to be the main predictor of hope. Since hope represents a core need and a tool for patients dealing with their illness, it is essential to implement stage-specific and realistic hope-facilitating interventions and support patients in their search for meaning, which promotes spiritual well-being and appears relevant in fostering hope.

From the person receiving care to the subject of care: the I-you relationship in psychiatry

The subjective recognition by those involved in care, of people with psychiatric disorders, is not self-evident. Caregivers, in the general sense of the term, often find it difficult to recognise the personal freedom and dignity of psychiatric patients. Care is, however, inseparable from the relationship oftrustand the mobilisation of the patient's ability to freely express choices and to participate in decisions concerning him; a central ability in the caregiver-patient relationship. Although the objectives of access to care and protection of the patient's rights are clearly stated, the question of the mental patient's freedom of choice, as well as his inner moral freedom, remains open to question, as does the questioning of these same freedoms among care providers.

Privacy, or the Lack Thereof, and Its Implications for Dignity in Mobile COVID-19 Testing.

IntroductionChicago’s COVID-19 Rapid Response Team (CRRT) is a decentralized, interprofessional group of nurses, residents, students, and faculty who provide free COVID-19 testing for those living or working in congregate settings (i.e., shelters, long term care facilities, prisons and encampments) due to their increased risk. Individuals within these vulnerable populations regularly experience stigma, a lack of privacy, and healthcare discrimination as they are often in low-income and underserved communities. The CRRT tests in settings that are necessarily large (cafeterias, meeting areas, gymnasiums, recreation rooms), and provide little physical privacy. Regardless of patient circumstances, respecting patient dignity is a professional standard of care, and patient privacy is consistent with that standard.MethodsGuided by trauma-informed care techniques, emancipatory nursing practice, and cultural safety methodology, student members of the CRRT initiated a project focused on expanding physical privacy protection for those undergoing COVID-19 testing.ConclusionThough the introduction of a portable privacy screen started as an initiative to safeguard the dignity for underserved populations, this call to action implores current and future health care providers to prioritize the ethical treatment of those most vulnerable by advocating for patient dignity and privacy.

Home healthcare in Iran: A hybrid concept analysis.

Background:Healthcare is changing from a focus on acute care health issues to one of managing chronic conditions. This change has resulted in the development of home health-care systems as a way of managing chronic conditions outside the hospital. The aim of this study was to analyze the concept of home healthcare using a hybrid model.Materials and Methods:This hybrid concept analysis consisted of three phases: theoretical, fieldwork, and analytical. Science Direct, PubMed, ProQuest, and Scopus were searched with related terms in the theoretical phase. In the fieldwork phase, six professionals with experience in home healthcare were interviewed and after each interview, qualitative content analysis was conducted. During the final phase, descriptions and themes from the first two phases were combined.Results:In the theoretical phase, the definition of home healthcare included descriptions answering the Who, What, When, Where, and Why questions. In the fieldwork phase, the results were divided into three areas: 1-comprehensive care; 2-extent of services; and 3-outcomes. The final analysis phase of this study indicated that the home health-care concept is a comprehensive, professional, and holistic care system accompanied by medical services and professionals whose goals are to support an individual's health and provide care in their home. Healthcare provided in one's home was found to preserve a patient's dignity and reduce health-care costs.Conclusions:The definition of the home healthcare concept establishes a foundation for developing a comprehensive home health-care system. This concept analysis for home healthcare could be a guide for future studies.

Use of toilet alarms in inpatient settings.

To investigate the use of toilet alarms among patients at an increased risk for falls in inpatient settings while allowing for privacy and maintaining safety. Pre- and postsurvey data were collected among patients in the intervention and control groups, as well as among the healthcare staff, to determine perceptions of privacy and safety. Each participant group was compared according to the participants' responses to the pre- and postsurveys. On average, the intervention group perceived increased levels of privacy and safety compared with the control group. Staff also indicated increased privacy and safety. Additional research is necessary, but patient satisfaction, privacy, and dignity may be augmented by using toilet alarms in hospital settings.

Validity and reliability of the Brazilian version of the Patient Dignity Inventory (PDI - Br).

Objective:to perform the psychometric validation of the Brazilian version of the Patient Dignity Inventory (PDI – Br) in patients with advanced diseases in palliative care.Method:a methodological study to verify the psychometric properties of the Patient Dignity Inventory (PDI – Br) instrument, through validity and reliability tests.Results:the exploratory factor analysis showed a factorial solution with three factors, responsible for 40.9% of the explained variance, with adequate internal consistency for the Presence of Symptoms (α=0.859), Dependence (α=0.871), and Existential Suffering (α=0.759) domains. The test-retest was performed and indicated moderate to strong correlations. Convergent validity demonstrated a positive correlation between the Presence of Symptoms and the sadness (r=0.443) and anxiety (r=0.464) variables. Weak negative correlations were observed between the PDI – Br domains and functionality, spiritual well-being and quality of life.Conclusion:composed of three domains and 25 items, the PDI – Br instrument presented satisfactory psychometric properties for its use in our environment, through the evidence of validity and reliability.

Sialorrhoea Management Practices in Residential Older Adults Care Settings: A Qualitative Study.

The aim of this research was to explore both older adults' and health care professionals' experience and viewsof sialorrhoea management practices in older adult residential care settings. Sialorrhoea is quite a bothersome symptom among patients with certain neurological conditions. The complexity of sialorrhoea and its complications can be quite challenging for health care professionals. In the management of sialorrhoea, a multidisciplinary approach is proposed as an effective way of sialorrhoea management. Thematic analysis of collected data via semi-structured qualitative interviews with five focus groups involving 28 multidisciplinary health care members and 1 patient. The older adult and multidisciplinary health care professionals' view of the management of sialorrhoea in residential care settings were established under three main themes: 1) 'Sialorrhoea compromising patient's dignity', 2) 'Ad hoc local management' and 3) 'Further integration of care required'. At present, there have been no comprehensive multidisciplinary sialorrhoea management strategies to meet the various needs of older adults with sialorrhoea. It is important to minimize the negative impact of sialorrhoea on the patients. The recognition of issues associated with sialorrhoea provides constructive scope for the health care professionals to further investigate and develop more effective integrated sialorrhoea care protocols.

ETHICAL CHALLENGES IN HOSPITAL DUTY: NEPALESE NURSES’ LIVED EXPERIENCE

Background: Nursing is ethically grounded profession. Nurses work in proximity with patients where they may encounter ethical problems too. However, little is known about the ethical chal­lenge of nurses working in Nepal. Therefore, this study was undertaken to explore lived experience with ethical challenges among nurses working in government hospitals of Kathmandu, Nepal. Methods: Qualitative phenomenological design was carried out among nurses working in the five government hospitals of Kathmandu, Nepal. Twelve nurses who had greater than 5 years of work experience in patient care were selected purposively for the study. Data was collected through face to face interview method using in-depth interview guideline. All interviews were recorded in a digital voice recorder. The collected verbatim was transcribed and analyzed thematically. Results: All nurses experienced ethical challenges and perceived stress from those challenging situations. Three main themes derived from the participants’ experiences of ethical challenges were: errors in patient management; justice to the patient; burn out from duty. Nurses found inappropriate service to the patients, limited access of treatment and care to the patients, errors in procedure, autonomy and confidentiality issues, compromised respect and dignity of patients. When nurses found stressful working situation and conflicting legal and moral obligations, they felt burnout that leads to compromised quality of patients care. Conclusions: Nurses experience different ethically challenging situations in their duties. Experi­ences of these challenging situations are stressful and it affects nurses’ ability to deliver quality service. Hence, attention should be given to address ethical challenges of nurses.

Meaning Making as a Central Mechanism of Dignity Therapy for Older Adults With Cancer

Nearly 500,000 older Americans die a cancer-related death each year (National Vital Statistics Report, 2018). Following a diagnosis of a serious illness like cancer, maintaining a sense of dignity is central to a patient’s wellbeing. Dignity Therapy (DT) was recently introduced as an intervention to enhance dignity for terminally ill patients (Chochinov et al., 2005). This therapy provides patients opportunities to foster a sense of dignity though making meaning of their lives (Hack et al., 2010). To date, whether meaning-making actually occurs as a central mechanism of effective DT has not been tested. The current study investigates (i) how often and in what forms meaning-making occurs during DT, and (ii) how patients’ baseline feelings of dignity relate to meaning-making during DT. Participants were 25 male and female cancer outpatients (M age = 63.08; SD = 5.72). They completed the Patient Dignity Inventory (Chochinov et al., 2008) and then participated in Dignity Therapy with a trained provider. Sessions were audio recorded, transcribed, and reliably content-analyzed for meaning-making using an established coding scheme (Park & Folkman, 1997). Content-analysis revealed that all patients made meaning of past life events at least once (range: 1-12 occurrences). Multiple forms of meaning-making emerged, with Finding Benefit and Personal Growth most common. Patients reporting more dignity-related distress prior to DT showed greater meaning-making during the DT session (r = .46, p < 0.05). This study provides foundational evidence that meaning-making is a key mechanism of Dignity Therapy, helping older adults with cancer enhance dignity at end-of-life.

Factors Related to the Dignity of Older People in Tehran in 2020

The elderly are the fastest growing segment of the population globally. This is also the case in developing countries such as Iran. The fear of aging and the refusal to accept older adults into the mainstream of society affects the dignity of older people. This study was conducted to describe factors and dignity of older people in Tehran, Iran. This descriptive, correlational study was conducted on a sample of 215 older people above age 60 in 10 public parks in five regions of Tehran in 2020. A socio-demographic questionnaire and patient dignity inventory were used for data collection. Content validity and Cronbach’s alpha were used for evaluating the validity and reliability of questionnaires. Data were analyzed with SPSS. 60% of subjects were male and 40% female with a mean age of 68(± 5.05) year. The mean scores for dignity domains ranged from 67.30 (±17.56) for symptom distress, to 93.01(± 10.90) for dependency on a 100-point scale. The scores of dignity domains were significantly associated with job status, housing status, income source, health insurance, chronic diseases, annual physician referral rates, and hospitalization in last year. The best predictors of dignity were health insurance and annual physician referral rates. The findings of this study showed that the dignity of older people is related to a number of factors. Monitoring modifiable factors such as health insurance and annual physician referral rates and non-modifiable factors such as chronic diseases will help us to preserve or improve the dignity of older people.