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The excesses of care: A matter of understanding the asymmetry of power
Abstract
The aim of the article is to illustrate concrete problems in the asymmetrical nurse-patient power relationship. It is an ethical demand that the nurse is faced with the challenges that the power in the relation is administered so that the patient's room for action is expanded and trust maintained. It is an essential message in care philosophy, but in clinical practice, success is not always achievable. A hidden and more or less unconscious restriction of the patient's room for action may result in the excesses of care. Three selected aspects: dependence, trust, and power described by the Danish philosopher K.E. Løgstrup and the Norwegian nursing philosopher Kari Martinsen's care philosophy has inspired this empirically based examination of some current barriers in the asymmetrical nurse-patient relationship. On the basis of qualitative interviews with six patients and six nurses, the research thus provides an identifying and problem-exploratory examination of some current obstacles in which the handling of trust and power reflects the excesses of care. The findings develop three themes. 'Being a burden' acknowledges that the balance of power will always tip to the nurse's advantage. The second theme, 'Doing only what's absolutely necessary', shows how a fixation with 'technicalism' creates a distance between people that may constrain the patient's room for action. The last theme is concerning the nurse's ability to navigate between closeness and distance is essential in avoiding 'the excesses of care', paternalism, and overprotectiveness. A situation in which distance takes the upper hand and care turns into paternalism. A different situation would arise if the nurse's emotions became sentimental or intimate with the result that closeness gets the upper hand. To avoid a harmful exercise of power and the excesses of care, the findings have demonstrated that a relationship-based caring is a demand for situation-specific sensitive attention skills.
... For å kunne utvikle faglig og personlig trygghet innenfor et felt, krever det at sykepleiere opplever gjentagende mestring. Dersom sykepleiere ikke innehar nok erfaring fra tidligere vellykkede situasjoner, kan de bli usikre (Delmar, 2012). Utvikling av klinisk skjønn kan beskrives som evnen til å gjøre vurderinger basert på et bredt erfaringsgrunnlag, der intuisjon danner grunnlaget for handling (Delmar, 2012;Grimen, 2009). ...
... Dersom sykepleiere ikke innehar nok erfaring fra tidligere vellykkede situasjoner, kan de bli usikre (Delmar, 2012). Utvikling av klinisk skjønn kan beskrives som evnen til å gjøre vurderinger basert på et bredt erfaringsgrunnlag, der intuisjon danner grunnlaget for handling (Delmar, 2012;Grimen, 2009). Ekspertise og klinisk skjønn utvikles når sykepleiere tester og videreutvikler forslag, hypoteser og prinsippbaserte forventninger i reelle kliniske situasjoner, noe som kan styrkes gjennom mengdetrening (Grimen, 2009). ...
... Sykepleierne opplevde trolig et etisk dilemma der verdiene velgjørenhet og autonomi var i konflikt med hverandre. Hvilken verdi sykepleiere velger å prioritere kan vaere avgjørende for hvordan det går med pasienten (Delmar, 2012;Grimen, 2009). NIV-behandling skal ikke gis med tvang, men noen pasienter er for syke til å forstå sitt eget beste (Torheim & Gjengedal, 2010). ...
Abstract
Treatment with non-invasive ventilation (NIV) can be conducted at general wards with an intermediate care room and can therefor potentially mitigate the pressure on the intensive care capacity. The aim of this study was to elucidate what nurses consider as important prerequisites for successfully initiating NIV treatment in general wards with an intermediate care room. The study employed a qualitative method with an exploratory and descriptive design. Individual semi-structured interviews were conducted with seven nurses. Data were analysed using systematic text condensation. The nurses considered that creating a safe relationship based on the patient's needs through presence and attention, and having sufficient NIV competence, were prerequisites for successful initiation of NIV treatment. Furthermore, the successful initiation of NIV treatment requires nurses that can conduct diverse clinical and ethical assessments in order to assess the patient's needs and the effectiveness of the NIV treatment. The novelty of this study is that it describes the initiation of NIV treatment in general wards with an intermediate care room.
... Indeed, feminists and care ethicists have argued that the belief in autonomy has become too dominant within health care (cf. Delmar, 2012), criticizing the notion of independent, rational choice, and highlighting International Journal of Communication 16 (2022) TV Inside the Psychiatric Hospital 133 the complexities involved in a person's autonomy. Individuals are relational, they argue, and sometimes they depend on others (cf. ...
... Considering the power asymmetry and relationship of dependence between patient and health staff (Beauchamp & Childress, 2013;Delmar, 2012) and even just the felt moral obligation to say yes to a request from journalists (Palmer, 2018), this challenges the perception of independent, rational patient choices in this case. The patients' decisions to participate or withdraw were framed in important ways by health staff and program makers; it was not the patients' own initiative to disclose their mental illness on TV. ...
... Considering the effects on some patients, one may ask if the necessary premises for informed consent that are vital for the realization of true patient autonomy, and the principle of avoiding harm and the ability to have one's own voice recognized, were fulfilled in this case. An increased sensitivity toward how relations of dependency affect autonomy (e.g., Delmar, 2012;Mackenzie & Stoljar, 2000), and a better understanding of the media logics and implications of the TV format might have yielded more cautiousness. ...
This study investigates patients' experiences with participating in a television (TV) documentary series filmed within psychiatric hospital wards. The study relies on interviews with patients, health staff, and TV producers, and asks how access is negotiated and how patients experience different phases of the production process. Based on a discussion of health ethics versus journalistic ethics, and the particular relations of power asymmetry and dependence within a health institution, the study concludes that a discourse emphasizing the benefits of openness worked to overshadow the need for extra sensitivity and care for the most vulnerable patients. Most patients appreciated the opportunity to share their experiences of illness and hospital treatment, but the increased strain on patients who were negatively affected by exposure calls for renewed attention to what informed consent and autonomy imply when media professionals enter health institutions.
... The sensitivity of the nurse in being able to understand the various situations that arise requires attentive presence [35]. Although the available time with the patient may be perceived as too short [36], the nurse´s attention to the needs of the moment can clearly make the patient´s day good or bad [37]. ...
... The ethical demand places the power in the encounter in the nurse's hands, the power to choose an ethical approach to the patient, to be caring, or to be dismissive. Trust must develop in such a way that it can be maintained in the relationship [37,38]. The elderly woman expresses a sense of powerlessness. ...
... A feeling of vulnerability makes it difficult to maintain trust. Vulnerability increases when trust is challenged [37]. ...
The study's rationale:
The Scandinavian nursing tradition is based on caring science as the ontological backdrop. This means that meeting the patient with openness and respect is essential in care. The experiences of an elderly woman receiving home nursing provide insight into a world many healthcare workers need to understand; meaning what is important in the encounter with the fragile old patient whose voice is not often heard in the society nor in research. Caring science with its person-oriented care clashes with the New Public Management's ideal for municipal health care in Norway, at the expense of the needs of the elderly patients.
Aims and objectives:
This article aims to express the phenomenon of lived experience as presented by an elderly woman, more specifically her experience of care in home nursing run according to the principles of new public management.
Methodological design:
The article is based on an empirical narrative in the form of an individual qualitative research interview.
Findings:
The patient has needs that cannot be defined without the nurse having an ethical understanding of what may be important in the patient´s lifeworld. The core findings are: Feeling disregarded as a human being, Broken agreements, Surrendering in anonymous relationships and Each day is a different day with altered needs.
Conclusion:
The system of New Public Management sets a strain on the time at hand for the nurse to develop a relationship that acknowledges and supports the patient´s life courage. The ethical demand and care ethics can explain how the patient´s will to live can be preserved, and provide knowledge of how the caregiver can best attend to the patient's ways of expressing what is important to her. Nevertheless, within the time at disposal, the nurse has an opportunity to either marginalize or strengthen the old person´s dignity.
... 7 In an ICU family care setting the moral aspect lies in a (silent) demand that ICU clinicians act in the family's best interest and are worthy of the family's trust in them. 8,9 This emphasizes the importance of clinician-family interaction in providing high-quality family care. ...
... The power relationship between the two parties is asymmetrical. 8,26 Nurses' and physicians' authority is obvious in their position, uniform, professional knowledge, and personal behavior. 26 Clinicians are probably also subject to a silent demand to diminish the power imbalance and become attuned to the world of the family members. ...
... Both extremes may imply that clinicians overlook what really matters to a family in a particular situation. 7,8 Professional care differs from private and personal care in requiring professional knowledge and empathetic skills, but also the ability to distinguish between one's own and the family's needs. 27 Awareness of one's own feelings through reflection can help clinicians avoid too close, sentimental feelings or too much distance, which may make care more personal than professional. ...
Background: ICU patients’ family members are in a new, uncertain, and vulnerable situation due to the patient’s critical illness and complete dependence on the ICU nurses and physicians. Family members’ feeling of being cared for is closely linked to clinicians’ attitudes and behavior.
Aim: To explore ICU nurses’ and physicians’ bedside interaction with critically ill ICU patients´ families and discuss this in light of the ethics of care.
Research design: A qualitative study using participant observation, focus groups, and thematic narrative analysis.
Participants and research context: Data were gathered from July 2017 to August 2019, in four ICUs in Norway through 270 h of fieldwork and seven focus groups with ICU nurses and physicians.
Ethical considerations: The Regional Committee for Medical and Health Research Ethics and the Norwegian Centre for Research Data approved the study. Findings: Quality of ICU family care depends on nurses’ and physicians’ attitudes, behavior, and personality traits. Three main themes were identified: being attentive, an active approach, and degree of tolerance.
Discussion: The findings are discussed in light of the ethics of care and empirical research from the intensive care environment.
Conclusions: This study shows that attentive, active, and tolerant clinicians represent a culture of ethical care that gives families greater freedom of action and active participation in patient care. Clinicians must not bear sole responsibility for this culture; it must have a firm basis in the hospital and ICU and be established through training, interprofessional reflection, and support of clinicians.
... Expanding the patients' room for action upholds the patients' respect and dignity. However, too much focus on the patients' independence, responsibility and own choice may cause a feeling of devaluation and hinder the patients getting the help needed (Delmar, 2012). Shared decision-making is possible when the patients' and the MHCPs' shared expertise is applied throughout the mental care (Beyene, Severinsson, Hansen and Rørtveit, 2018b). ...
... MHCPs should use their power in a way that demonstrates their equal worth, expands their patients' room for action and safeguards their patients' human rights (Pahtare & Sheilds, 2012). Sensitive awareness is needed in order to be conscious of their own role in the asymmetrical power relationship in decision-making (Delmar, 2012). If the MHCPs are not conscious about how dependent the patients are on them (Grimen, 2009) and how to use their power for their patients' benefit, the patients' dignity may become offended (Lindwall, Boussaid, Kulzer, & Wigerblad, 2012). ...
... How MHCPs respond may be experienced as healing in one situation and invading in another and balancing between assistance and autonomy is necessary in order to protect the patients' dignity (Delmar et al., 2011;Lindwall et al., 2012). MHCPs should be sensitively aware of their patients, their own emotions and the dynamics in the relationship (Delmar, 2012;Akerjordet & Severinsson, 2004). Constantly being able to empathically support the patients' worth, safeguarding human rights and expanding the patients' room for action, the MHCPs need to interpret and communicate emotional information, combining emotions with intelligence when sharing decision-making (Akerjordet & Severinsson, 2004). ...
Introduction:
Several studies describe barriers and facilitators for implementing shared decision-making in mental care. However, a deeper understanding of the meaning of shared decision-making in this context is lacking. Shared decision-making is aimed at facilitating patients' active participation in their care by placing them at the centre of care. Too much focus on the patients' autonomy may hinder them getting the help they need. A comprehensive understanding of shared decision-making is needed for its implementation.
Aim/question:
To interpret the meaning of shared decision-making in mental care as perceived by patients and mental healthcare professionals. The research question was: What is the meaning of shared decision-making in mental care?
Method:
A hermeneutic inductive design with a thematic interpretative analysis of data was performed from in-depth interviews with 16 patients and multistage focus group interviews with eight mental healthcare professionals.
Results:
The overall theme being in a space of sharing decision-making for dignified mental care was described by the three themes engaging in a mental room of values and knowledge, relating in a process of awareness and comprehension and responding anchored in acknowledgement.
Discussion:
Balancing the patients' need for assistance with autonomy, whilst safeguarding their dignity, is a challenging process requiring mental healthcare professionals to possess professional competence.
Implications for practice:
Organized professional development of the carers' professional competence is important to facilitate shared decision-making. This article is protected by copyright. All rights reserved.
... Sharing means togetherness and something giving energy to growth, development, and inner strength. At the same time, it is important to remember that the interactions between nurses and patients are asymmetrical (Delmar, 2012). The nurse has a role in the relationship with the patient that differs from that found between two friends whose connection is fully voluntary. ...
... Having different perspectives on important issues such as informational, practical, and emotional needs, might create a gap between the caregiver and the care-receiver in the postnatal period. Balancing closeness and distance are important aspects, and as shown in the results of this metaethnography (Aston et al., 2015;Homanen, 2017), focus must be placed on establishing a close caring relationship where care needs and concerns can be unraveled, while simultaneously keeping some distance, allowing parents to develop self-reliance and trust in their own resources (Delmar, 2012). The included studies revealed that stretching human boundaries contributes to unique opportunities for good postnatal care, and this has the potential to offer new insight for parents as well as health professionals. ...
Care in the postnatal period is a goal for all families with a newborn baby, and support from nurses might prevent long-term health problems and contribute to a positive postnatal experience. This meta-ethnography aims to integrate and synthesize qualitative studies that illuminate and describe nurses’ perspectives on municipal postnatal health care in high-income countries. Systematic literature searches for qualitative studies were conducted and 13 articles were included. The analysis followed the seven phases of Noblit and Hare. Being a “warrior” to care for the new family was identified as an overarching metaphor accompanied by three main themes: Stretching human boundaries, Stretching system boundaries, and Stretching knowledge boundaries. The overarching metaphor offers a deeper understanding of the nurses as “warriors” who despite tight timeframes and heavy workloads are stretching toward a caring relationship with the families. Being a warrior continuously pushing system boundaries puts the nurses in risk of being overstretched, balancing between their ideals and the reality. As more knowledge and clearer policies and procedures regarding the inclusion of fathers and LGBTQ parents in municipal postnatal healthcare are needed, more focus placed on the father or non-birthing parent, different cultural traditions and family constellations in practice and education is suggested.
... Power asymmetries. The relationships between individuals with intellectual disabilities and caregivers usually involve considerable power asymmetries (Brown, 1999;Delmar, 2012;Wolkorte et al., 2019), including asymmetries of definitional power (Nunkoosing and Haydon-Laurelut, 2011). Caregivers have the power to decide what is considered problematic, occasionally using this power to place the problem within the individual concerned, discounting contextual factors (Nunkoosing and Haydon-Laurelut, 2011). ...
... These co-occurring interests may not always be commensurable. Caregivers may also have difficulties coping with normal levels of discomfort or distress in individuals with intellectual disabilities, leading to what Delmar (2012) refers to as excess of care, which may bias proxy ratings in a sort of malingering by proxy. Thus, proxy ratings may be affected by the same kinds of bias as self-report. ...
Influence from bias is unavoidable in clinical decision-making, and mental health assessment seems particularly vulnerable. Individuals with intellectual disabilities have increased risk of developing co-occurring mental disorder. Due to the inherent difficulties associated with intellectual disabilities, assessment of mental health in this population often relies on a different set of strategies, and it is unclear how these may affect risk of bias. In this theoretical paper, we apply recent conceptualisations of bias in clinical decision-making to the specific challenges and strategies in mental health assessment in intellectual disabilities. We suggest that clinical decision-making in these assessments is particularly vulnerable to bias, including sources of bias present in mental health assessment in the general population, as well as potential sources of bias which may be specific to assessments in this population. It follows that to manage potential bias, triangulating information from multi-informant, multi-method, interdisciplinary assessment strategies is likely to be necessary.
... To reverse the public's under-utilization of PHC has always been a major concern in China, and our study verified that it is partly due to the lack of patients' trust in local physicians, which is similar to previous studies [50,51]. According to social exchange theory, trust is typically associated with high-quality communication and benign interactions between patients and providers [52]; trust facilitates disclosure by the patient and gives the patient greater confidence in decision making regarding healthcare seeking [53,54]. In China, patients are more worried about the uncertainty and risk of the competence and intentions of PHC providers compared to secondary and tertiary medical service institutions. ...
... In China, patients are more worried about the uncertainty and risk of the competence and intentions of PHC providers compared to secondary and tertiary medical service institutions. Trust may help improve patients' perceptions of healthcare providers [54], then enhance their loyalty, further balance their risk and uncertainty perceptions of service delivery processes [10,13,55], and provide the basis for patient's decisions to seek healthcare through PHC. However, the information asymmetry between patients and providers [56], and the fact that they have become increasingly empowered to make informed decisions [10,57], influenced the patients' trust in physicians. ...
Background:
The internet has greatly improved the availability of medical knowledge and may be an important avenue to improve patients' trust in physicians and promote primary healthcare seeking by reducing information asymmetry. However, very few studies have addressed the interactive impacts of both patients' internet use and trust on primary healthcare-seeking decisions.
Objective:
To explore the impact of internet use on the relationship between patients' trust in physicians and primary healthcare seeking among Chinese adults 18 years of age and older to understand the varieties of effects in different cities.
Methods:
Generalized linear mixed models were applied to investigate the interactive impacts of internet use and patients' trust in physicians on primary healthcare seeking using pooled data from the China Family Panel Study of 2014 to 2018. We also compared these effects based on different levels of urbanization, ages, and PHC services.
Results:
Overall, a higher degree of patients' trust (p < 0.001) was able to directly predict better primary healthcare seeking, and internet use significantly increased the positive effect of patients' trust on primary healthcare seeking (p < 0.001). However, the marginal effect analysis showed that this effect was related to the level of patients' trust and that internet use could reduce the positive effect of patients' trust on primary healthcare seeking when the individual had a low level of trust (≤ 3 units). Further, the heterogeneity analysis indicated that the benefits from internet use were higher in cities with high urbanization, high aging, and high PHC service levels compared to cities with low levels of these factors. Conclusions: The internet use may enhance patients' trust-related PHC utilization. However, this impact is effective only if patients' benchmark trust remains at a relatively high level. Comparatively, the role of internet use is more effective in areas with high urbanization, high aging and high PHC level. Thus, with increasing accessibility to the internet, the internet should be regulated to disseminate correct healthcare information. Moreover, in-depth integration of the internet and PHC should be promoted to provide excellent opportunities for patient participation, and different strategies should be set according to each city's characteristics.
... While a shift in the distribution of power from staff to patient is desirable, there is a risk that nurses and other professionals may develop misconceptions about situating autonomy in relation to the patients' abilities to always be active, self-managing and capable of making the right choices for themselves. 15 Instead, it is argued that patient autonomy should be viewed as being positioned within a responsible relationship with others where professionals' intervention in the decision-making process is understood as a prerequisite for autonomy. 16 Such 'relational autonomy' is thus based on a commitment from professionals to protect and promote the patient's autonomy in making judgements that are true to the patient's own wishes and values instead of abandoning the patient to make such choices themselves. ...
... 27 It may be that the ED nurses, due to their working conditions, do not have sufficient energy to be sensitive to patients' unique expressions for participation. Although this may be an explanation for strained relationships, it is difficult to justify ignoring the fact that the patient is in an asymmetric relationship, as described by Delmar,15 where the nurse has power that should be handled responsibly. ...
Background
Older patients in emergency care often have complex needs and may have limited ability to make their voices heard. Hence, there are ethical challenges for healthcare professionals in establishing a trustful relationship to determine the patient’s preferences and then decide and act based on these preferences. With this comes further challenges regarding how the patient’s autonomy can be protected and promoted.
Aim
To describe nurses’ experiences of dealing with older patients’ autonomy when cared for in emergency departments (EDs).
Research design
This study adopted reflective lifeworld theory and a phenomenological design.
Participants and research context
A total of 13 open-ended interviews were performed with nurses working at two EDs in Sweden.
Ethical considerations
The study was reviewed by the Ethical Advisory Board in South East Sweden and conducted according to the Declaration of Helsinki. All participants gave consent.
Findings
Nurses’ experiences of dealing with older patients’ autonomy in EDs are characterized by moving in a conflicting uphill struggle, indicating obscure thoughts on how patient autonomy can be protected in an ethically challenging context. The phenomenon is further described with its meaning constituents: ‘Being hampered by prioritization under stress’, ‘Balancing paternalism and patient autonomy’, ‘Making decisions without consent in the patient’s best interests’ and ‘Being trapped by notions of legitimate care needs’.
Conclusion
Stressful work conditions and lacking organizational strategies in EDs contribute to nurses maintaining unjustified paternalistic care, regardless of the patient’s ability and medical condition, and questioning who has legitimacy for participating in decisions about care. The nurses’ protection and promotion of older patients’ autonomy is dependent on the opportunity, ability and willingness to create a patient relationship where the patient’s voice and preferences are valued as important. Consequently, strategies are needed to improve patient autonomy in EDs based on the idea of ‘relational autonomy’.
... Power comprises knowledge, skills, and authority that create difference between the nurse and the patient (Kangasniemi, 2010). This unequal distribution of power is to some extent an unavoidable aspect of the nurse-patient relationship (Brown, 2016;Delmar, 2012). What matters is that nurses are aware of the power issues inherent to the relationship and that they question what they can do to expand patient's room for action and control over their health and health care (Delmar, 2012). ...
... This unequal distribution of power is to some extent an unavoidable aspect of the nurse-patient relationship (Brown, 2016;Delmar, 2012). What matters is that nurses are aware of the power issues inherent to the relationship and that they question what they can do to expand patient's room for action and control over their health and health care (Delmar, 2012). This requires however a positive and progressive attitude towards the importance of patient participation. ...
... Power comprises knowledge, skills, and authority that create difference between the nurse and the patient (Kangasniemi, 2010). This unequal distribution of power is to some extent an unavoidable aspect of the nurse-patient relationship (Brown, 2016;Delmar, 2012). What matters is that nurses are aware of the power issues inherent to the relationship and that they question what they can do to expand patient's room for action and control over their health and health care (Delmar, 2012). ...
... This unequal distribution of power is to some extent an unavoidable aspect of the nurse-patient relationship (Brown, 2016;Delmar, 2012). What matters is that nurses are aware of the power issues inherent to the relationship and that they question what they can do to expand patient's room for action and control over their health and health care (Delmar, 2012). This requires however a positive and progressive attitude towards the importance of patient participation. ...
... To establish a trusting relationship with the mother, nurses need to be attentive towards the mother's needs. 8 In the NICU, the mother is usually the primary parent during the hospital stay. Building trust is a challenge in a setting where the mothers are anxious about the fate of their newborn infant. ...
... 21,22 This is not possible when a common language is missing, and it is challenging to understand and decode the mothers' non-verbal language. 8 Without a common language, daily communication and information giving between nurses and mothers admitted to the NICU must be carried out through non-verbal communication, eye contact and guesswork. 7 Creating trust as an ethical enterprise Løgstrup 11 claims that trust is an anthropological part of human existence. ...
Background:
In the neonatal intensive care unit, immigrant parents may experience even greater anxiety than other parents, particularly if they and the nurses do not share a common language.
Aim:
To explore the complex issues of trust and the nurse-mother relationship in neonatal intensive care units when they do not share a common language.
Design and methods:
This study has a qualitative design. Individual semi-structured in-depth interviews and two focus group interviews were conducted with eight immigrant mothers and eight neonatal intensive care unit nurses, respectively. Data analysis was based on Braun and Clarke's thematic analytic method.
Ethical considerations:
Approval was obtained from the hospital's Scientific Committee and the Data Protection Officer. Interviewees were informed in their native language about confidentiality and they signed an informed consent form.
Results:
Trust was a focus for mothers and nurses alike. The mothers held that they were satisfied that their infants received the very best care. They seemed to find the nurses' care and compassion unexpected and said they felt empowered by learning how to care for their infant. The nurses discussed the mother's vulnerability, dependency on their actions, attitudes and behaviour.
Discussion:
Lack of a common language created a challenge. Both parties depended on non-verbal communication and eye contact. The nurses found that being compassionate, competent and knowledgeable were important trust-building factors. The mothers were relieved to find that they were welcome, could feel safe and their infants were well cared for.
Conclusion:
The parents of an infant admitted to the neonatal intensive care unit have no choice but to trust the treatment and care their infant receives. Maternal vulnerability challenges the nurse's awareness of the asymmetric distribution of power and ability to establish a trusting relationship with the mother. This is particularly important when mother and nurse do not share a verbal language. The nurses worked purposefully to gain trust.
... A person's opportunity to self-express depends on how one is considered by others. According to Delmar (2012), the relationship between a nurse and a patient is not fully voluntary and reciprocal, making it an asymmetrical professional relationship based on dependency and power. ...
... Consequently, some of the recalled experiences of powerlessness we described in our findings may be due to nurses being ignorant or unaware of their power over the patient. Nurses need to expose the unconscious and invisible actions of power to prevent the constriction of patients (Delmar, 2012). Some of the nurses who attempted to help patients Our findings show how nurses can contribute to patients' needed security as well as helplessness and fear, depending on how they distribute their power in care. ...
Aim
To identify and synthesize the evidence regarding adult patients' memories from their stay in the intensive care unit.
Design
A qualitative systematic review and meta‐synthesis. PROSPERO # CRD42020164928. The review employed the guideline of Bettany‐Saltikov and McSherry and the Enhancing transparency in reporting the synthesis of qualitative research guidelines.
Methods
Systematic search for qualitative studies published between January 2000 and December 2019 in Cumulative Index to Nursing and Allied Health, Medical Literature Analysis and Retrieval System Online, PsycINFO, and Excerpta Medica Database. Pairs of authors independently assessed eligibility, appraised methodological quality using Joanna Briggs's quality appraisal tool and extracted data. The analysis followed the principles of interpretative synthesis.
Results
Sixteen papers from 15 studies were included in the review. Three themes emerged: (a) memories of surreal dreams and delusions, (b) care memories from sanctuary to alienation and (c) memories of being vulnerable and close to death.
... The relationship is asymmetrical based on dependency and an asymmetric power relation with the MV patient as the weak part, not being able to speak or move themselves. However, in the current study we found that HCPs balanced between supporting and guidance which can reflect an attitude to expand the patient's room for action through encouragement and maintaining safety despite the asymmetric relation (Delmar, 2012). The stepwise approach supported the patients towards a successful experience of mobilisation and reflected HCPs engaging to promote patients physical ability and resources towards mobilisation actions. ...
Aim
To explore the practice of mobilisation of conscious and mechanically ventilated patients and the interaction between patients, nurses and physiotherapists.
Background
Long‐term consequences of critical illness can be reduced by mobilisation starting in Intensive Care Units, but implementation in clinical practice is presently sparse.
Design
A qualitative study with a phenomenological‐hermeneutic approach.
Methods
Participant observations in three Intensive Care Units involved twelve conscious mechanically ventilated patients, thirty‐one nurses and four physiotherapists. Additionally seven semi‐structured patient interviews, respectively at the ward and after discharge and two focus group interviews with healthcare professionals were conducted. The data analysis was inspired by Ricoeur's interpretation theory. The study adhered to the COREQ checklist.
Findings
Healthcare professionals performed a balance of support and guidance to promote mobilisation practice. The complexity of ICU mobilisation required a flexible mobility plan. Furthermore, interaction with feedback and humour was found to be ‘a leverage’ for patient's motivation to partake in mobilisation.
The practice of mobilisation found patients striving to cope and healthcare professionals promoting a ‘balanced standing by’ and negotiating the flexible mobility plan to support mobilisation.
Conclusion
The study revealed a need to clarify interprofessional communication to align expectations towards mobilisation of conscious and mechanically ventilated patients.
Relevance to Clinical Practice
The study demonstrated the important role of healthcare professionals to perform a stepwise and ‘balanced standing by’ in adequately supporting and challenging the mobilisation of mechanically ventilated patients. Furthermore, a synergy can arise when nurses and physiotherapists use supplementary feedback and humour, and cooperate based on a flexible situation‐specific mobility plan in intensive care.
... First, the Delphi method offers an unbiased manner of soliciting consensus when this is lacking [174]. The guarantee of anonymity reduces expert-layperson power asymmetries between clinicians and patients, which are inherent in typical health care interactions [175]. This provision is particularly important to people with DCM, the beneficiaries of the CIS, to assert their viewpoints without reservation. ...
Background: Health care decisions are a critical determinant in the evolution of chronic illness. In shared decision-making (SDM), patients and clinicians work collaboratively to reach evidence-based health decisions that align with individual circumstances, values, and preferences. This personalized approach to clinical care likely has substantial benefits in the oversight of degenerative cervical myelopathy (DCM), a type of nontraumatic spinal cord injury. Its chronicity, heterogeneous clinical presentation, complex management, and variable disease course engenders an imperative for a patient-centric approach that accounts for each patient's unique needs and priorities. Inadequate patient knowledge about the condition and an incomplete understanding of the critical decision points that arise during the course of care currently hinder the fruitful participation of health care providers and patients in SDM. This study protocol presents the rationale for deploying SDM for DCM and delineates the groundwork required to achieve this.
... First, the Delphi method offers an unbiased manner of soliciting consensus when this is lacking [174]. The guarantee of anonymity reduces expert-layperson power asymmetries between clinicians and patients, which are inherent in typical health care interactions [175]. This provision is particularly important to people with DCM, the beneficiaries of the CIS, to assert their viewpoints without reservation. ...
Background
Health care decisions are a critical determinant in the evolution of chronic illness. In shared decision-making (SDM), patients and clinicians work collaboratively to reach evidence-based health decisions that align with individual circumstances, values, and preferences. This personalized approach to clinical care likely has substantial benefits in the oversight of degenerative cervical myelopathy (DCM), a type of nontraumatic spinal cord injury. Its chronicity, heterogeneous clinical presentation, complex management, and variable disease course engenders an imperative for a patient-centric approach that accounts for each patient’s unique needs and priorities. Inadequate patient knowledge about the condition and an incomplete understanding of the critical decision points that arise during the course of care currently hinder the fruitful participation of health care providers and patients in SDM. This study protocol presents the rationale for deploying SDM for DCM and delineates the groundwork required to achieve this.
Objective
The study’s primary outcome is the development of a comprehensive checklist to be implemented upon diagnosis that provides patients with essential information necessary to support their informed decision-making. This is known as a core information set (CIS). The secondary outcome is the creation of a detailed process map that provides a diagrammatic representation of the global care workflows and cognitive processes involved in DCM care. Characterizing the critical decision points along a patient’s journey will allow for an effective exploration of SDM tools for routine clinical practice to enhance patient-centered care and improve clinical outcomes.
Methods
Both CISs and process maps are coproduced iteratively through a collaborative process involving the input and consensus of key stakeholders. This will be facilitated by Myelopathy.org, a global DCM charity, through its Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy community. To develop the CIS, a 3-round, web-based Delphi process will be used, starting with a baseline list of information items derived from a recent scoping review of educational materials in DCM, patient interviews, and a qualitative survey of professionals. A priori criteria for achieving consensus are specified. The process map will be developed iteratively using semistructured interviews with patients and professionals and validated by key stakeholders.
ResultsRecruitment for the Delphi consensus study began in April 2023. The pilot-testing of process map interview participants started simultaneously, with the formulation of an initial baseline map underway.
Conclusions
This protocol marks the first attempt to provide a starting point for investigating SDM in DCM. The primary work centers on developing an educational tool for use in diagnosis to enable enhanced onward decision-making. The wider objective is to aid stakeholders in developing SDM tools by identifying critical decision junctures in DCM care. Through these approaches, we aim to provide an exhaustive launchpad for formulating SDM tools in the wider DCM community.
International Registered Report Identifier (IRRID)DERR1-10.2196/46809
... CCNs need to be aware of their asymmetrical power concerning patients and that there is a fine line between distance and closeness in the interpersonal relationships between nurses and patients (Delmar, 2012). A CCN can end up damaging the nurse-patient relationship in situations where they come too close to the patient, and the boundary defining what is considered private is blurred. ...
Objectives
To explore critical care nurses’ experiences of caring for adult patients experiencing iatrogenic opioid withdrawal in the intensive care unit.
Research methodology/design
A qualitative study with an explorative and descriptive design was conducted. Data were collected through semi-structured interviews and systematic text condensation was used to analyse the data. The study was reported according to the consolidated criteria for reporting qualitative research checklist.
Setting and participants
Ten critical care nurses, working at three different intensive care units in two university hospitals in Norway.
Findings
Three categories were identified in the data analysis. “Subtle signs and symptoms of opioid withdrawal”, lack of a systematic approach to opioid withdrawal, and the prerequisites for appropriate management of opioid withdrawal. Critical care nurses experienced challenges in identifying opioid withdrawal due to subtle and vague signs and symptoms, especially when not knowing their patient or when difficulties were encountered with patient communication. A systematic approach to opioid withdrawal and increased knowledge, definitive plans for weaning, as well as interdisciplinary unity and collaboration, could improve the management of opioid withdrawal.
Conclusion
Validated assessment tools, systematic strategies, and guidelines are essential for the management of opioid withdrawal in opioid naïve patients in intensive care units. The prerequisites for an appropriate management of opioid withdrawal are an accurate and effective communication among critical care nurses and other healthcare professionals involved in patient care.
Implications for clinical practice
There is a need for a validated assessment tool, systematic strategies, and guidelines for the management of opioid withdrawal in opioid naïve patients in intensive care units. Increased emphasis needs to be placed on the process of identifying iatrogenic opioid withdrawal and improving opioid withdrawal management in the education system and clinical practice.
... CCNs need to be aware of their asymmetrical power concerning patients and that there is a fine line between distance and closeness in the interpersonal relationships between nurses and patients (Delmar, 2012). A CCN can end up damaging the nurse-patient relationship in situations where they come too close to the patient, and the boundary defining what is considered private is blurred. ...
Aim
To synthesise the qualitative evidence regarding the role of critical care nurses in the decision-making process of withdrawing life-sustaining treatment in critically ill adults.
Design
Qualitative systematic review.
Review Methods
This qualitative systematic review employed the guidelines of Bettany-Saltikov and McSherry. The review was reported according to the ENTREQ checklist. Pairs of authors independently assessed eligibility, appraised methodological quality and extracted data. Data were synthesised using thematic synthesis.
Data Sources
CINAHL, MEDLINE and EMBASE were searched for studies published between January 2001 and November 2021.
Results
Twenty-three studies were included. Three analytical themes were synthesised: performing ethical decision-making to safeguard patients' needs rights, and wishes; tailoring a supporting role to guide the family's decision-making process; and taking on the role of the middleman by performing coordination.
Conclusion
The role of the critical care nurses in the decision-making process in withdrawal of life-sustaining treatment requires experience and the development of the clinical perspective of critical care nurses.
Implications for the profession and/or patient care
Enhanced knowledge of the decision-making process of withdrawing life-sustaining treatment can prepare critical care nurses to be more equipped to master this role and enhance their ability to handle the emotional and moral stress associated with this part of the critical care unit.
Impact
The literature reveals the complex and challenging role of critical care nurses during the decision-making process of withdrawing life-sustaining treatment. Critical care nurses perform ethical decision-making to safeguard patients' concerns, guide the family's decision-making process and take on the role of the middleman. The findings have implications for critical nurses working in critical care units in hospitals and for educators and students in training in critical care nursing.
Patient or Public Contribution
No patient or public contribution was included
... In the second theme 'The (im)balance of power -tele-emergency reinforces the positions', the power balance between the patient and the professionals is described. According to Delmar (2012), HCPs need to acknowledge an always-existing power asymmetry, where the patient never has the upper hand in the relationship . ...
Introduction: Telemedicine provides opportunities for access to health care in remote and underserved areas. In parts of northern rural Sweden telemedicine is used to connect a remote physician by a video-conference system to an emergency room, staffed by nurses during on-call hours. This can be called 'tele-emergency'. Patient participation, often described as mutual information exchange, a trustful relationship and involvement in decision-making, is challenged in emergency care by short encounters, deteriorating patients and a stressful work situation. Nevertheless, patient participation may be important for the patients' experience. Healthcare professionals (HCPs) have been identified as 'gatekeepers' for patient participation, therefore putting their perspective in focus is important. As emergency care in rural areas is increasingly turning toward telemedicine, patient participation in tele-emergencies needs to be better understood. The aim of this study was to explore and characterise HCPs' perspectives of patient participation in tele-emergencies in northern rural Sweden.
Methods: A qualitative design based on interviews was used. HCPs working in cottage hospitals in northern rural Sweden were included. Semi-structured interviews were performed, first, in multidisciplinary groups of three informants. Later, because of limited experience of tele-emergencies in the groups, individual interviews with HCPs with substantial experience were added. A qualitative content analysis of the interview transcripts was conducted.
Results: A total of 44 HCPs from northern inland Sweden participated in the interviews. The content analysis resulted in two themes, six categories and 19 subcategories.
Theme 1, 'To see, understand, and to build trust through the digital barrier', contains descriptions of the interpersonal relationship between the patient and the HCPs, and the challenges when interacting with the patient during a tele-emergency. The informants also described a need for boundaries between the professional team and the patient. The categories in theme 1 are 'understanding the patient's point of view', 'building a trustful relationship', and 'needing a private space without the patient'.
Theme 2, 'The (im)balance of power - tele-emergency reinforces the positions', mirrors the power asymmetry in the patient-professional relationship, and the potential impact of the tele-emergency on the different roles. Tele-emergencies were described as a risk that potentially could weaken the patient's position, but also as providing an opportunity to share power. Categories in theme 2 are 'medical conditions limit patient participation', 'patient involvement in decision-making requires understanding' and 'the inferior patient and the superior professionals'.
Conclusion: This study sheds light on patient participation in tele-emergencies in a remote rural setting from the HCP's perspective. The tele-emergency set-up affected patient participation by interfering with familiar patient-HCP relationships and changing group dynamics in interactions with the patient. Due to the extensive changes of the conditions for patient participation imposed in tele-emergencies, suggestions for actions improving patient participation are made.
... Thus, when the impact of the conversation does not reflect the intent, the result can be patient marginalization in the process of care. This is particularly salient when there are asymmetrical power dynamics during clinical conversations [106] or where there language and culture barriers that are limiting [107]. ...
Purpose
The purpose of this meta-ethnography was to synthesize the research exploring patient/provider perceptions of clinical conversations (CC) centered on chronic musculoskeletal pain (CMP) in vulnerable adult populations.
Materials and methods
A systematic search for qualitative/mixed method studies in CINAHL, PubMed, Scopus, Sociology Database in ProQuest, and Web of Science used PRIMSA-P guidelines. Data synthesis used eMERGe guidelines; findings were presented in nested hierarchal theoretical frameworks.
Results
The included studies explored patients’ (n = 18), providers’ (n = 2), or patients’ and providers’ perspectives (n = 5) with diversity in patient participants represented (n = 415): immigrants, indigenous people, women, and veterans. Themes for each level of the nested hierarchal models revealed greater complexity in patients’ perceptions about the CC in CMP relative to clinicians’ perceptions. A unique finding was sociopolitical/historical factors can influence CC for vulnerable populations.
Conclusion
The combined nested hierarchical models provided insight into the need for clinicians to be aware of the broader array of influences on the CC. Key themes indicated that improving continuity of care and cultural training are needed to improve the CC. Additionally, due to patients’ perception of how healthcare systems’ policies influence the CC, patients should be consulted to guide the change needed to improve inequitable outcomes.
•
IMPLICATIONS FOR REHABILITATION
• Healthcare providers wishing to improve the clinical conversation in chronic musculoskeletal pain can more broadly explore potential factors influencing patients’ experiences and perceptions.
• Screening during the clinical conversation can include assessing for sociopolitical and historical influences on patients’ experiences with chronic musculoskeletal pain.
• Healthcare providers can explore how to minimize disjointed care in an effort to improve the clinical conversation and outcomes in chronic musculoskeletal pain.
• Healthcare providers and patients can work together to improve inequitable outcomes for vulnerable adults with chronic musculoskeletal pain.
• This may include cultural training for healthcare providers that is informed by patients.
... A liberdade dos sujeitos, fica comprometida para além do caráter disciplinar ou segregativo das instituições, ou seja, quanto maior o grau de dependência dos cuidados de Enfermagem, menor o espaço para autonomia do idoso, família e cuidador e mais evidente fica a relação assimétrica de poder (20) . Nessa análise e discussão, observou-se que a "avaliação funcional" do idoso não teve ênfase nas colocações dos sujeitos, contudo, na atenção Primária ela é essencial para encaminhamentos qualificados a partir de diagnóstico, prognóstico ...
Objetivo:
Comprender las relaciones de enfermería en el cuidado del anciano en la Atención Primaria desde la perspectiva del marco teórico-filosófico de Foucault.
Método:
Estudio cualitativo de análisis de contenido. Los sujetos fueron enfermeros de Atención Primaria de Belo Horizonte, Minas Gerais, Brasil. Se realizaron cinco grupos focales con 8 participantes.
Resultados:
Surgieron las siguientes categorías: apoyo adecuado para el cuidado del anciano, la enfermera define la trayectoria del cuidado de los ancianos, las relaciones de poder-saber en el cuidado del anciano.
Conclusión:
El cuidado del anciano a partir de la Atención Primaria implica la comprensión de las relaciones de enfermería permeadas por competencias y saberes. Esta comprensión es importante para el desarrollo de interacciones cualificadas que potencien las prácticas de enfermería como acciones sociales consolidadas en la red de atención a la salud del anciano.
... Nurses reacted with greater empathy and a greater ability to identify themselves with patients, and that enabled them to better personalize their care to the needs of each patient, a care that they had sometimes missed when they were sick, and that they would have wished for themselves. They were no longer in an asymmetric or paternalistic relationship with patients (51). These nurses came back to patient care more aware of being part of the same vulnerable and mortal humanity as the patients they were caring for. ...
Since the pandemic began nurses were at the forefront of the crisis, assisting countless COVID-19 patients, facing unpreparedness, social and family isolation, and lack of protective equipment. Of all health professionals, nurses were those most frequently infected. Research on healthcare professionals' experience of the pandemic and how it may have influenced their life and work is sparse. No study has focused on the experiences of nurses who contracted COVID-19 and afterwards returned to caring for patients with COVID-19. The purpose of this study was therefore to explore the lived personal and professional experiences of such nurses, and to describe the impact it had on their ways of approaching patients, caring for them, and practicing their profession. A phenomenological study was conducted with 54 nurses, through 20 individual interviews and 4 focus groups. The main finding is that the nurses who contracted COVID-19 became “wounded healers”: they survived and recovered, but remained “wounded” by the experience, and returned to caring for patients as “healers,” with increased compassion and attention to basic needs. Through this life-changing experience they strengthened their ability to build therapeutic relationships with patients and re-discovered fundamental values of nursing. These are some of the ways in which nurses can express most profoundly the ethics of work done well.
... As clients' illness progresses and becomes increasingly severe, nurses often suffer vicariously with them. In this regard, Delmar describes the risk that too close an emotional bond to patients' 'fate' can pose, leading to nurses' tendency to overprotect clients [54]. This contributes, in turn, to paternalism in nursing care. ...
Background
In the context of the advancement of person-centered care models, the promotion of the participation of patients with chronic illness and complex care needs in the management of their care (self-management) is increasingly seen as a responsibility of primary care nurses. It is emphasized that nurses should consider the psychosocial dimensions of chronic illness and the client’s lifeworld. Little is known about how nurses shape this task in practice.
Methods
The aim of this analysis is to examine how primary care nurses understand and shape the participation of patients with chronic illness and complex care needs regarding the promotion of self-management. Guided interviews were conducted with nurses practicing in primary care and key informants in Germany, Spain, and Brazil with a subsequent cross-case evaluation. Interpretive and practice patterns were identified based on Grounded Theory.
Results
Two interpretive and practice patterns were identified: (1) Giving clients orientation in dealing with chronic diseases and (2) supporting the integration of illness in clients’ everyday lives. Nurses in the first pattern consider it their most important task to provide guidance toward health-promoting behavior and disease-related decision-making by giving patients comprehensive information. Interview partners emphasize client autonomy, but rarely consider the limitations chronic disease imposes on patients’ everyday lives. Alternatively, nurses in the second pattern regard clients as cooperation partners. They seek to familiarize themselves with their clients’ social environments and habits to give recommendations for dealing with the disease that are as close to the client’s lifeworld as possible. Nurses’ recommendations seek to enable patients and their families to lead a largely ‘normal life’ despite chronic illness. While interview partners in Brazil or Spain point predominantly to clients’ socio-economic disadvantages as a challenge to promoting client participation in primary health care, interview partners in Germany maintain that clients’ high disease burden represents the chief barrier to self-management.
Conclusions
Nurses in practice should be sensitive to client’s lifeworlds, as well as to challenges that arise as they attempt to strengthen clients’ participation in care and self-management. Regular communication between clients, nurses, and further professionals should constitute a fundamental feature of person-centered primary care models.
... Gaining insight into how carers perceive encounters is achieved by developing an awareness of their mindset and predetermined ideas, which play a major role in the quality of the carer-patient relationship (De Leeuw et al., 2012). This insight may help carers avoid an imbalance of power within the carer-patient relationship (Delmar, 2012). ...
In forensic nursing, carers must balance caring and limiting actions in encounters with patients. Interpreting suffering in others raises awareness of one's own vulnerability. Hence, the aim of this study was to describe the phenomenon of vulnerability as experienced by carers in forensic inpatient care. Nine participants were recruited at a major forensic hospital, and their narratives were analysed with a reflective lifeworld approach. The findings revealed that vulnerability was both a strength and a burden. Vulnerability comprised becoming aware of one's boundaries, being genuine and protecting oneself. Dealing with vulnerability enables carers to open up to patients.
... As described by Larsson and Jormfeldt (2017, p. 2) "sharing knowledge and expertise between persons is a key component of mutuality" and closely related to interdependence. This is in line with researchers like Delmar (2012), Eckerström et al. (2019), andFinfgeld (2004), who imply that nurses need to give up some of their control to reduce differences in power and that nurses' power should be used to support patient recovery, rather than ensuring compliance and certain behaviours. The latter has been described not only in forensic psychiatry which by its nature is strictly regulated (Hörberg, 2008) but also in general care (Rundqvist, 2004). ...
Purpose
This study aims at exploring how psychiatric nurses’ experiences of patient participation could be understood from a caring science perspective.
Methods
The design was inspired by clinical application research., which is a hermeneutic approach developed within caring science research. . In this study data were co-created during four reflective group dialogues where five participants’ experiences of patient participation were reflected on in the light of caring science theory and research. The transcribed dialogues were subjected to a thematic, hermeneutic interpretation.
Results
The interpretation gave rise to three themes; giving room for the patient to find his/her own pathway, strengthening personhood, and being in a balanced communion. From these themes an underlying pattern of the meaning of participation as being mutually involved in the patients’ process of recovery arose.
Conclusion
From a caring science perspective the meaning of psychiatric nurses experiences of patient participation could be understood as an interpersonal process reflecting the reciprocity in human relationships. This means a shift in understanding of patient participation from procedures related to the planning of nursing care, to understanding participation as a process focusing on the mutual involvement of patients and nurses in the patients’ process of recovery.
... I en tverrprofesjonell tjeneste vil omsorgsbegrepet kunne favne et felles fagområde og verdigrunnlag og vaere et overordnet begrep i og for fagfeltet. Omsorg som begrep kan bidra til økt bevissthet rundt ansvar, sårbarhet, tillit og makt som er til stede i møte mellom helsepersonell og mennesker (Delmar, 2012). Omsorgsbegrepet baerer med seg positive assosiasjoner og forventninger som kan gi mening (Rønsen & Jakobsen, 2018). ...
Palliation is a concept that has gained increasing relevance in recent years. The terms palliation and alleviation are often used in Norwegian academic environments. However, the concepts and use of the concepts in clinical practice are unclear. The purpose of the study is to clarify the concepts of palliation and alleviation and thereby gain a deeper understanding of these concepts.
A determination of the concepts palliation and alleviation was made. Etymological dictionaries were used to study the meaning of words. The contextual determination was based on Norwegian White Papers dealing with palliation and/or alleviation.
Palliation and alleviation have different etymological origins. ‘Palliationʼ refers to protection, dignity and rank. ‘Alleviationʼ means attenuation and mitigation. According to the documents, palliation involves a multidisciplinary person-centered approach with value-based anchoring where the individualʼs needs, and not the diagnosis, are the focus. The palliative effort supports a meaningful life for patients and families. Both palliation and alleviation are given a necessary perspective by relating to the concept of care. It implies a holistic approach from the time of diagnosis to the end of life. The organization and structure of the health care services are of importance to enable patients to live a meaningful life.
Keywords: Palliative care, hermeneutic, concept determination, concept analysis
... self-manage (Runciman, 2014;Wilson et al., 2006), whereas other studies suggest that nurses fear overstretching patients and families (Jacobs, 2019;Macdonald et al., 2008). In this case, our framework concurs with Delmar (2012), who notes that nurses find themselves in a dilemma of overprotecting or underprotecting patients. Both situations could result from failed attempts to level power imbalances (cf. ...
Background: Primary healthcare nurses’ potential to enable patient and community participation has been increasingly acknowledged. A conceptual understanding of their contributions within a broad range of participation processes is still lacking.
Aims: The aims of this study were to develop a conceptual framework that provides information on the role of primary healthcare nurses in shaping participation processes with patients and communities in the context of chronic diseases and to identify conditions that enable or hinder the promotion of patient and community participation by nurses.
Design: An integrative review was conducted.
Data sources: Twenty-three articles published from 2000 to 2019 were included in the analysis: 19 retrieved from PubMed and CHINAL and 4 added through other sources.
Review methods: An inductive data analysis and quality appraisal of studies were conducted.
Results: The analysis reveals four areas where nurses are involved in facilitating patient and community participation: (1) sharing understanding of health problems and needs, (2) developing resources and facilitating patient education for self-management, (3) raising patients’ voices as an advocate in service development and (4) supporting individual and community networks. The conditions affecting nurses’ engagement in fostering participation processes are as follows: (1) care priorities and overall workload, (2) nurses’ attitudes towards participation and (3) users’ acceptance of nurses as partners.
Conclusions: Future research can use the framework as a basis for empirical studies investigating nurses’ involvement in pursuing patient and community participation. Interventions should focus less on indirect forms of participation, like patient education or advocacy, but should also focus on active forms of participation. Research is needed on nurses’ involvement in community participation processes.
Impact: This framework can be used and adapted in future research on patient and community participation in primary healthcare. It describes areas of participation and the facilitators and barriers within the broad range of activities of primary healthcare nurses.
... Weight is an objective, simple, non-invasive method ( and parents in early in-home care video consultations. As argued by Delmar (2012), parents' room for action may be constrained by paternalistic administration when parents are not given the chance to talk about topics and phenomena that concern them. Our findings regarding the nurse-dominated consultations could therefore indicate that parents were not given the chance to open up about their potential concerns or questions due to a power asymmetry between themselves and the nurses. ...
Aim: This study examined how communication between nurses and families in video consultations in a neonatal early in-home care program unfolded in the context of parents’ homes.
Design: A qualitative study based on focused observations supported by audio-recorded video consultations.
Methods: The data were collected through nine video consultations between nurses and families in an early in-home care program. The transcribed material was examined using inductive content analysis.
Findings: The analyses revealed the following themes: “Setting the scene”, “Weight as a point of reference” and “The pros and cons of technology”. The video consultations unfolded in a relaxed atmosphere, but also as one-way communication dominated by nurses, with the infant’s weight as the focus. The study finds that a focus on training in video communication is needed to take full advantage of video consultations’ potential.
... Sie erleben einen Prozess kontinuierlicher Veränderungen, denen sie begegnen müssen. Gepflegt zu werden und die Pflege zu akzeptieren, sowohl von pflegenden Angehörigen als auch von professionellen Pflegenden, ist für sie eine Herausforderung (Delmar, 2012;Hechinger et al., 2019a). Sie versuchen, trotz des Voranschreitens von Erkrankung und Pflegebedürftigkeit Normalität aufrecht zu erhalten und ihre Autonomie zu wahren (Fringer, Hechinger & Schnepp, 2018;Holmberg et al., 2012). ...
Vertrauen(müssen) in der Beziehung zwischen pflegenden Angehörigen, Patient*innen und beruflich Pflegenden. Ein sozialkonstruktionistischer Diskurs.
Aufbau: Einleitung - Vertrauen als relationaler Prozess - Vertrauen beginnt im Individuum - Vertrauen für eine erfolgreiche Zusammenarbeit - Macht, Vertrauen und Vertrauensbruch - Kontrolle und Veränderbarkeit der Haltung - Fazit - Literatur.
... This argument comes in different guises, using different words. One such word is paternalism (Delmar, 2012;Kittay, 2019;Risjord, 2014;Tronto, 1993) which refers to forms of political, social and economic dependency faced by caregivers who bear the responsibility of (often unpaid or underpaid) care work (1999, p. 46). A third such word is subordination. ...
Dependency is fundamental to caring relationships. However, given that dependency implies asymmetry, it also brings moral problems for nursing. In nursing theory and theories of care, dependency tends to be framed as a problem of self-determination-a tendency that is mirrored in contemporary policy and practice. This paper argues that this problem frame is too narrow. The aim of the paper is to articulate additional theoretical 'problem frames' for dependency and to increase our understanding of how dependency can be navigated in practices of long-term care. It does so by way of an empirical ethical analysis of how care professionals tackle the problem of dependency in group homes for people with intellectual disabilities. The paper refers to these practices of mitigating the problem of dependency as 'dependency work', a phrase borrowed from Eva Kittay. The analysis of dependency work suggests that for care professionals, dependency is a threefold problem: one of self-determination, one of parity and one of self-worth. These findings suggest that patient autonomy cannot be a full solution to the problem of dependency in long-term care relations. But they also show that dependency as such is not a problem that can be solved, as attempts to mitigate it only serve to tighten the dependency relationship further. This is the paradox of dependency work.
... However, the nurses' domination of the consultations and the way they worked may also indicate an asymmetry of power between nurses and parents in early in-home care video consultation, as families also seemed to overlook aspects such as the camera not being pointed at the nurse, which prevented them from seeing the nurse they were talking to. As argued by Delmar (2012), the patients' room for action may be constrained by paternalistic administration when patients are not given the chance to talk about topics and phenomena that concern them. The nurse-dominated consultations could therefore mean that the families were not given the chance to open up for their potential concerns or questions, due to a power asymmetry between the nurse and parents. ...
... Die Beziehung zwischen Pflegenden und beatmeten Menschen in der häuslichen Intensivversorgung ist daher per se von Unfreiwilligkeit und Asymmetrien gekennzeichnet. Diese Faktoren gelten im pflegewissenschaftlichen Vertrauensdiskurs als wesentliche Merkmale von Vertrauen in Pflegebeziehungen, die bei deren Gestaltung stets mitzudenken sind (Delmar 2012, Dinç et al. 2013Dinç et al. 2012). Das ausgeprägte kontextspezifische Risiko für die Pa-tient_innen wird durch das generelle Risiko, das vertrauensbasierte Beziehungen auszeichnet, noch zusätzlich verstärkt: Menschen, die Vertrauen schenken, machen sich verletzlich, denn stets ist die Möglichkeit des Vertrauensbruchs gegeben (Schweer 2008;Dinç et al. 2012). ...
Interpersonales Vertrauen spielt eine wesentliche Rolle in tragfähigen Pflegebeziehungen – gerade dann, wenn die Beziehung durch Vulnerabilität und Abhängigkeit besonders stark geprägt ist, wie etwa in der häuslichen Intensivversorgung der Fall. Im Rahmen einer qualitativen Sekundärdatenanalyse, wurde daher nach Bedeutung und Merkmalen interpersonalen Vertrauens für die Beziehungsgestaltung zwischen häuslich beatmeten Menschen und professionell Pflegenden gefragt. Die Ergebnisse zeigen, dass sich v. a. Verlässlichkeit, fachliche und überfachliche Kompetenzen der Pflegenden und Vertrautheit zwischen den Beteiligten fördernd auf die Vertrauensentwicklung auswirken. Fehlt es an Vertrauen, kann dies die Pflegebeziehung belasten, etwa durch kontrollerhaltende Verhaltensweisen der beatmeten Menschen. Der Grad des Vertrauens in der Pflegebeziehung wirkt sich auch auf das subjektive Sicherheitsgefühl der Patient_innen aus. Die Pflegebeziehung verantwortlich zu gestalten und damit Vertrauen und subjektive Patientensicherheit zu stärken, obliegt der professionellen Verantwortung der Pflegenden.
... Even so, when collaboration is based on nonverbal language and the nurses' "antennas," there will be misunderstandings and problems. Patient-nurse relationships are fragile and require heightened sensitivity and awareness to overcome communication barriers and decipher the patients-or mothers'-needs (Delmar, 2012). ...
Aim and objectives:
To explore how communication in neonatal intensive care units (NICUs) between immigrant mothers and nurses take place without having a common language, and how these mothers experience their NICU stay.
Background:
Admission of infants to NICU affect both parents and infants. Immigrant mothers constitute a vulnerable hospital population in need of culturally, linguistically and individually tailored information.
Design and methods:
The study had a qualitative design reported according to the COREQ criteria. Eight mothers who spoke neither Scandinavian nor English went through individual semi-structured interviews. Six mother-nurse interactions were observed, and eight nurses' experiences were explored through focus-group interviews. All interviews were audio recorded and transcribed verbatim. The analysis was thematic and hermeneutic in character.
Results:
Interpreters were present during the consultations with the physicians, but rarely during the daily nurse-mother interactions. Nurses focused on daily routines, infant care guidance and mother-infant attachment. The mothers learned through demonstrations and hands-on guidance. Language barriers made it difficult to assess the mothers' understanding, but the mothers expressed that they felt adequately included in the care of their infant and well informed and guided. Even so, both mothers and nurses expressed desire to use interpreters more regularly. The pictorial communication boards available lacked important vocabulary needed in neonatal nursing contexts and their use furthermore interrupted the mother-nurse conversation.
Conclusion:
Body language, simple words, guesswork, trial and error characterized the nurse-mother interaction. The nurses adopted various communication strategies to help the mothers understand and give them a voice. Competent interpreters were limited to meetings with physicians, but not during daily bedside guidance and information giving by nurses.
Relevance to clinical practice:
Knowledge of immigrant mothers' and nurses' communication strategies and how both parties think, feel, and act to overcome communication problem is necessary to improve clinical practice and reduce communication barriers. IMPACT STATEMENT: 'What does this paper contribute to the wider global clinical community?' Increased globalization leads to increased number of mothers in the NICU who are unable to speak the majority language This paper adds to understand how mothers and nurses without a common language communicate.
... The quality of encounters and its interactions between healthcare professionals and patients has a profound impact on healthcare outcomes, patients' experiences of healthcare services, and patient satisfaction with care [6][7][8]. Since any encounter between a healthcare professional and a patient is characterized by power imbalance, asymmetry, and differences in expectations [3,6,9], healthcare professionals ought to be aware of how they encounter the patients. ...
Encounters and interactions between healthcare professionals and patients are central in healthcare services and delivery. Encountering persons who frequently use psychiatric emergency services (PES), a complex patient group in a complex context, may be particularly challenging for healthcare professionals. The aim of the study was to explore healthcare professionals’ experiences of such encounters. Data were collected via individual interviews (N = 19) and a focus group interview with healthcare professionals consisting of psychiatric nurses, assistant nurses, and physicians. The data were analyzed with qualitative content analysis. This study focused on the latent content of the interview data to gain a rich understanding of the professionals’ experiences of the encounters. Two themes were identified: “Nurturing the encounter with oneself and colleagues for continuous, professional improvement” and “Striving for a meaningful connection with the patient”. The professionals experienced their encounters with persons who frequently use PES as caring, professional, and humane processes. Prerequisites to those encounters were knowing and understanding oneself, having self-acceptance and self-compassion, and working within person-centered cultures and care environments.
... 1 However, the power in the patient-provider relationship is ultimately held by the provider, and any misuse of power can be detrimental to the relationship and patient care. 2 Patients actively search for providers they can trust, but building a firm and unwavering trust is a process that occurs over the course of the patientprovider relationship. 3 LoCurto and Berg identified a number of qualities and behaviors associated with developing and maintaining trust, such as "honesty, confidentiality, dependability, communication, competency, fiduciary responsibility, fidelity, and agency". ...
Background
Trust is pivotal for a productive relationship between patients and healthcare providers and is positively correlated with multiple clinical and humanistic outcomes. However, the impact of trust in healthcare providers on different domains of health-related quality of life (HRQoL) among diabetic patients has not been studied in detail.
Purpose
The aim of this study was to examine the association between the physical, mental or psychological, social, and environmental domains of HRQoL with the patients’ trust in their primary care physicians while controlling for several sociodemographic and clinical factors. The study was conducted among a sample of diabetic patients.
Patients and Methods
This study had a prospective questionnaire-based, multi-center, cross-sectional design. The patients were recruited from three public hospitals in Saudi Arabia. Patients’ experiences and trust in their primary care physicians were assessed using the Health Care Relationship Trust (HCR-Trust) scale. HRQoL was assessed using the Arabic version of the World Health Organization Quality of Life-BREF (WHOQOL-BREF). Multiple linear regression was conducted to assess the relationship between HCR-Trust and the WHOQOL-BREF physical, psychological, social, and environmental domains controlling for age, Charlson Comorbidity Index (CCI) score, health literacy, sex, education, annual income, nationality, and illness duration.
Results
Three hundred and sixty-four patients participated in the study. The scores in all four domains of WHOQOL-BREF were positively associated with HCR-Trust scores of the diabetic patients. Additionally, the scores in the physical (β = −10.26; 95% CI: −13.77 to −6.74; P < 0.0001) and psychological (β = −3.91; 95% CI: −7.44 to −0.38; P < 0.0001) domains were negatively associated with female gender. Furthermore, the physical domain score was negatively associated with the duration of illness (β = −0.26; 95% CI: −0.506 to −0.02; P = 0.032). The environmental domain score was positively associated with annual income (β = 2.31; 95% CI: 1.05 to 3.56; P = 0.030). Other patient characteristics, such as age and education, were not associated with the scores of any of the WHOQOL-BREF domains.
Conclusion
Patient trust in healthcare providers is positively associated with different domains of HRQoL. Therefore, building and maintaining trust with patients is important to achieve favorable treatment outcomes.
... The nurse is expected to be responsible and maintain professional boundaries as these "are the spaces between the nurse's power and the patient's vulnerability" (National Council of State Boards of Nursing 2014, p. 4). Originating from the perspective of the therapeutic relationship imbalances of power between nurse and patient as following the patient's vulnerability have been stated(Delmar 2012; National Council of State Boards of Nursing 2014;Shatell 2004). Nevertheless, nurses are encouraged to show involvement while simultaneously maintaining a professional distance(Duppel 2005; Nursing Council of New Zealand 2012;Williams 2001). ...
The nurse–patient relationship is of great significance for both nurses and patients. The purpose of this article is to gain an understanding of how the individual is constituted through a focus on the execution of the patient’s and nurse’s role in the joint relationship. The article represents a social-constructionist consideration using Kenneth Gergen’s concept of multi-being. Gergen’s notions of the self as a multi-being focuses on the individual’s relational character through former relationships and social interactions. Gergen’s concept is applied onto nurses and patients as individuals to gain an understanding of the broader institutional and social context of each role and their interactions within the nurse–patient relationship. The article focuses on the nurse–patient relationship in general with regard to specific challenges in the home care setting. Various demands and experiences from a myriad of past relationships merge as potential actions for nurses and patients during the forming of a relationship. Nurses as multi-beings see themselves confronted with guidelines and legal conditions, their own as well as the patients’ expectations and the actual possible forming of a relationship in the light of daily nursing care. Patients as multi-beings experience an extended social environment that comprises the nurse–patient relationship while simultaneously having to cope with illness and increasing care dependency within their own homes. Discrepancies can be observed in the relationship with regard to the inherent human qualities, the demands of forming a relationship, and the actual relationship arising due to framework conditions.
... The general trend of this reconfiguration is that a care relationship which is too asymmetric (Delmar 2012) seems today less legitimate. In particular, the practice of any form of constraint applied to a patient becomes much more problematic than it was, at least theoretically. ...
This article aims at describing the tensions arising from working on and with someone in psychiatry, in order to make this person more “autonomous”. First, through the example of the recovery, it acknowledges, the normative horizon of what is considered today as “good care”: a negotiation between partners, aiming at increasing the possibilities for everyone to follow their own lifestyle. It then seeks to describe how this definition of good care is endorsed and applied in two institutions (in Belgium and in France) hosting people with severe mental health issues where the care teams are using three words (“contract”, “project” and “autonomy”). The article analyses the difficulties encountered while putting into practice these demanding ideals and shows how and to what end the care teams take action in defining the “good” projects and, in a more general way, what patients can or should expect from themselves and from their future.
Migrant live-in care workers are a main pillar of long-term care in many countries, including Germany. Several studies examining their working and living conditions reveal serious problems. However, a key element of live-in arrangements, namely the relationship between the individuals involved, has not yet been systematically investigated from an ethical perspective.
Building on previous socioempirical work that explored and set out the meaning of “care networks”, we start from the premise that live-ins are embedded in a network of relationships which are essential for their employment and living situation.
The theoretical analysis draws on a network approach that takes care–ethical considerations into account. Using Joan Tronto’s four care–ethical phases, existing dependencies are described and reflected upon using the corresponding four care–ethical dimensions. The central questions are how dependencies in the live-in arrangement can be characterised based on the existing body of empirical studies and with a focus on the elements of power, dependency and trust in the ethical reflection on care.
Based on this analysis, it becomes apparent that the ambivalence resulting from the simultaneity of different forms of asymmetry and mutual dependence is omnipresent in live-in arrangements and gives rise to seemingly contradictory forms of relationships and emotions. Responsibilities are vague and are constantly renegotiated on the basis of implicit assumptions and problematic role expectations and are also assigned without negotiation.
In the future, it will not only be necessary to better understand and clarify responsibilities at the micro level of the individual care arrangement from the various positions and roles and with a view to the changing processes of caring for another, but also to address the pressing ethical questions and problems in live-in arrangements at the meso and macro levels—enriched by care–ethical perspectives.
Aim:
To explore and describe older persons' unique experiences of care encounters with home care nurses in a real-life context.
Background:
The increasing number of older persons in society contributes to increases in age-related impairments compromising their quality of life. Future care consists of "hospitals at home" where care encounters occur in a person's private domain, partly becoming a clinical workplace. Scant research has focused on how older persons experience care encounters with home care nurses and needs to be highlighted.
Design:
Multiple-case study.
Methods:
The cases relied on replication logic and five purposive sampled older persons were interviewed. Data were analysed using qualitative content analysis and differences within and between cases were explored and findings across the cases were replicated.
Findings:
The cross-analysis emerged in three categories: "Nursing routine rules the care encounters", "Lack of knowledge and information" and "Dependency on support from others".
Conclusions:
Our research has found that older persons face challenges while receiving home care, including limited engagement in their care and the need for enhanced support. Implementing person-centred care in homes poses ethical challenges that require careful consideration. Home care nurses should prioritise understanding each patient individually, recognising them beyond their patient role, which necessitates more thorough and time-sensitive care encounters.
Reporting method:
Findings were reported using COREQ guidelines.
Patient or public contribution:
Patients were interviewed and contributed with data for this study.
Implications for the profession and patient care:
This study emphasises the need to prioritise individualised care in home settings and listen to the voices of older individuals to enhance quality.
This article presents an exercise in applied narratology within the context of intensive care nursing, specifically the writing of diaries by nurses for patients to fill in memory gaps and alleviate trauma. The article discusses narrative from three perspectives: (1) as nursing practice, resulting in patient diaries with narrative characteristics and purposes; (2) as analysis of this practice, in a study coupling narrative and nursing theory and practice; and (3) as the application of narratological concepts into practice through dialogues with nurses, with the aim of transferring insights gained from the analysis and enabling nurses’ reflection on their positions, practices and power as narrators for patients. The article argues that narratology can be operationalized for nursing work, and there are compelling reasons for why it should , which necessitate methodological reflexivity and mutual curiosity, trust, and learning, and considerations about how far the remit of the narratologist, as a non-expert, extends.
Aim
To summarise, interpret and synthesize research findings on patients' and nurses' experiences of caring in nursing across clinical practices.
Background
Caring is a universal element of nursing; however, economic restrictions often negatively impact health services, and time shortages and limited numbers of staff may characterize care encounters. It is unclear how these contextual conditions affect patients' and nurses' experiences of caring.
Design and Methods
This integrative literature review covers papers published between 2000 and 2022. Four databases—PubMed, PsycINFO (via Ovid), MEDLINE (via Ovid) and CINAHL (via EBSCO)—were systematically searched for eligible papers in May 2022. The included studies were critically appraised. Content analysis was performed to interpret and synthesize the findings. In accordance with the EQUATOR guidelines, the PRISMA 2020 and PRISMA‐S checklists were used. An Integrative review methodology guided the process.
Findings
In total, 33 studies were included in the review. Three themes captured the experiences of caring in nursing: (1) the complexity of the nursing care context, (2) the professionalism of the nurse, and (3) the trusting patient–nurse relationship.
Conclusion
The experience of caring in nursing depended on nurses' competence and discretion in the personal encounter framed by the nursing context. The caring relationship was based on reciprocity, but it remains asymmetrical, as the nurse had the power and responsibility to empower the patient. Barriers, such as increased demands for efficiency and resource scarcity, may hinder the experience of caring in nursing.
Implications for the profession and patient care
By promoting an ongoing discussion of caring in nursing, nurse management can systematically support nurses in reflecting on their practice in diverse and complex clinical contexts.
Patient or public contribution
No patient or public contribution was made due to the study design.
Aim: Synthesize qualitative evidence examining how nurses' attitudes, beliefs, and sense of efficacy and the context surrounding birth facilitate or hinder family- centered nursing practice.
Design: Thematic synthesis of qualitative studies.
Methods: A literature search was conducted in CINAHL, MEDLINE, PsycINFO, SCOPUS, SCIENCE DIRECT, REPÈRES, CAIRN, and ÉRUDIT from October 2020 to June 2021. The PRISMA guidelines were followed, and studies were critically ap- praised using the Critical Appraisal Skills Programme checklist. Data were extracted by two independent reviewers, and Thomas and Harden's qualitative thematic syn- thesis method was performed for data analysis.
Results: Thirteen studies were included. Three analytical themes were generated: (1) sharing power: opposing beliefs, (2) feeling a sense of efficacy in fulfilling one's role, and (3) managing a challenging work environment.
Patient or Public Contribution: Synthesizing nurses' experience is essential to pro- mote implementation of favourable changes for care that is more focused on the needs of families.
Background
Diaries written by nurses for critically ill patients have been implemented in some intensive care units as an intervention to construct patients' “lost time” and fill in their gaps in memory. Studies have shown that diaries have an impact on patients' psychological recovery after intensive care. However, little is known about how nurses view and carry out the process of writing a diary on behalf of a patient.
Objective
To investigate the choices nurses make in content and language, the rationale by which they make them, and how these narrative aspects shape the story of critical care that is constructed in the diary.
Design
The study was conducted using a qualitative approach informed by narrative methodology.
Setting
Three intensive care units at a university hospital in Denmark.
Participants
Nine nurses with experience in diary writing. Each of the participants handed in five anonymized diary notes written for different patients they had cared for.
Methods
The study combined textual analysis of the diary notes and a thematic analysis of individual interviews with nurses about their narrative choices when writing the diary.
Findings.
Three prominent strategies that characterize nurses' choices of content and language were identified: 1) Making the situation of intensive care more manageable, 2) Showing acts of perceiving the patient, and 3) Constituting relations through actions and interactions. The study showed that on one hand these strategies engage the patient and depict nurses' care, empathy and support, yet on the other, reveal the nurses' power to interpret, passivize and downplay the patient's experiences.
Conclusion
It was demonstrated that although the diary narrative is written about and for the patient, who is referred to and addressed as you, the nurse's interpretations, evaluations, perceptions, and actions figure prominently throughout the diary. Narrating for a you to some degree relegates the patients to a secondary position in their own diary. With the power to control the diary narrative, nurses' linguistic choices may either narrow down or expand possibilities for the patient's own understanding when reading the diary after intensive care.
Permission to produce and store all data was obtained from the Danish Data Protection Agency (no. 18/60944).
Medicine today is a field of permanent tensions: between structures and individuals, between public policies and individualised patient care, and between patients and their therapists. This article reflects on the notion of care as a way of resolving the problems encountered by health professions by considering one of their fundamental concepts. For this purpose, research was carried out in the medical literature in order to understand the definitions in which care is discussed in current medicine. Based on the findings, three paradigms or constructs related to the notion of care are detailed: a) Patient Centered Care, b) the ethics of care, and c) the idea of Whole Person Care. Even with the notable differences between these constructs, it is possible to rescue the framework of care: the objective being for the good of the patient. Thus, a proposal for the reflection on caring for others is developed, based on what is the concept of ″objective good for the person″ in accordance with the thinking of the philosopher Dietrich von Hildebrand.
Background and aims
Even though there is a lot of focus on nutrition in hospitals, patients often continue to lose weight during their stay. A meal is a complex activity. Several factors have an influence on the intake of nutrition. The purpose of the study is to identify the experiences of patients about eating situations, wishes and needs in connection with meals during their stay in the hospital.
Methods
Twenty individual semi structured interviews were conducted at the North Denmark Regional Hospital and Aalborg University Hospital, Thisted. The inclusion criteria were age ≥18, cognitively and linguistically capable of participating and able to consume food ≥24 hours. The participants were selected based on sex, age, and surgical and medical departments to ensure a broad representation.
Results
The patients experienced that the health professionals were friendly and caring and the food was really good. Despite general satisfaction, the patients reported many different experiences that are presented in the following themes: “The care relationship,” “Meeting the system,” “Influence from the surroundings,” and “Social interaction with fellow patients and physical discomfort”. The care relationship is considered to be essential. Some patients felt that they were met by helpful and accommodating health professionals while others felt rejected and corrected. The patients reacted to the health professionals being busy by adapting their expectations to the system and accepting the conditions. Hospital surroundings with catheter bags and IV drips influenced the patients and diminished their desire for food. The physical surroundings could make it difficult to sit comfortably when eating. Some patients wanted the company of other patients during their meal but would like to be able to choose with whom they shared their meals. Some patients tended to feel exposed and found it undignified and preferred to eat alone.
Conclusions
The study indicates that it is important to ensure individual settings for the patients during meals and the focus should be on the relationship between patients and health professionals.
Background
Caring for a partner with primary malignant brain tumour can be a dramatic life-changing event. Primary malignant brain tumour is known to give poor life expectancy and severe neurological and cognitive symptoms, such as changed behaviour and personality, which demand greater caring responsibilities from spouses.
Aim
The aim of the study is to explore ethical dilemmas spouses experience in the everyday care of a partner in treatment for primary malignant brain tumour.
Research design, participants and research context
A phenomenological and hermeneutic qualitative descriptive design was adopted as a method for collecting and analysing data. Ten spouses were interviewed twice using an in-depth, semi-structured interview guide. The interviews took place at the spouses’ homes or at the hospital.
Ethical consideration
Ethical matters were considered throughout the research process. Permission from The National Committee on Health Research Ethics and the Danish Data Protection Agency was obtained.
Findings
The analysis showed that the spouses perceived daily ethical dilemmas in caring for a partner with primary malignant brain tumour. Their life as well as their partner’s life had changed considerably. The main theme that emerged therefore was ‘oscillating in a changing relationship’. This theme was further elaborated in three subthemes that in more detail demonstrated the dilemmas: ‘doing the right thing in unpredictable daily situations’; ‘torn between patience and guilt’; and ‘living in a time of uncertainty, hope and despair’.
Conclusion
Caring for a partner with changed behaviour and personality due to primary malignant brain tumour may involve exhausting ethical caring dilemmas. Spouses’ married life may change to a semi-professional asymmetrical relationship, which is challenged by the oscillation between acting responsibly for their partners’ well-being and caring dilemmas with no answer for what the right thing to do is. Mixed feelings of right and wrong, patience and guilt, hope and despair seem to be spousal companions through their partners’ progressing illness.
Aims and Objectives
We aimed to explore nurse‐patient interactions in relation to the mobilization of non‐sedated and awake mechanically ventilated patients in the intensive care unit.
Background
Lighter sedation has enabled the early mobilization of mechanically ventilated patients, but little is known about the nurses’ role and interaction with critically ill patients in relation to mobilization.
Design and Methods
The study had a qualitative design using an ethnographic approach within the methodology of interpretive description. Data were generated in two intensive care units in Denmark, where a strategy of no sedation was applied. Participant observation was conducted during 58 nurse‐patient interactions in relation to mobilization between nurses (n=44) and mechanically ventilated patients (n=25). We conducted interviews with nurses (n=16) and patients (n=13) that had been mechanically ventilated for at least three days. The data were analysed using inductive, thematic analysis. The report of the study adhered to the COREQ checklist.
Findings
We identified three themes: “Diverging perspectives on mobilization” showed that nurses had a long‐term and treatment‐oriented perspective on mobilization, while patients had a short‐term perspective and regarded mobilization as overwhelming in their present situation. “Negotiation about mobilization” demonstrated how patients actively negotiated the terms of mobilization with the nurse. “Inducing hope through mobilization” captured how nurses encouraged mobilization by integrating aspects of the patient's daily life as a way to instil hope for the future.
Conclusions
Exploring the nurse‐patient interactions illustrated that mobilization is more than physical activity. Mobilization is accomplished through nurse‐patient collaborations as a negotiated, complex and meaningful achievement, which is driven by the logic of care, leading to hope for the future.
Relevance to clinical practice
The study demonstrated the important role of nurses in achieving mobilization in collaboration and through negotiation with mechanically ventilated patients in the intensive care unit.
This article is protected by copyright. All rights reserved.
1. Uncovering the Knowledge Embedded in Clinical Nursing Practice. 2. The Dreyfus Model of Skill Acquisition Applied to Nursing. 3. An Interpretive Approach to Identifying and Describing Clinical Knowledge. 4. The Helping Role. 5. The Teaching-Coaching Function. 6. The Diagnostic and Monitoring Function. 7. Effective Management of Rapidly Changing Situations. 8. Administering and Monitoring Therapeutic Interventions and Regimens. 9. Monitoring and Ensuring the Quality of Health Care Practices. 10. Organizational and Work-Role Competencies. 11. Implications for Research and Clinical Practice. 12. Implications for Career Development and Education. 13. The Quest for a New Identity and New Entitlement in Nursing. 14. Excellence and Power in Clinical Nursing Practice. Epilogue: Practical Applications. References. Glossary. Appendix. Index.
This article focuses on Danish patients’ experience of autonomy and its interplay with dignity and integrity in their meeting with health professionals. The aim is to chart the meanings and implications of autonomy for persons whose illness places them in a vulnerable life situation. The interplay between autonomy and personal dignity in the meeting with health care staff are central concepts in the framework. Data collection and findings are based on eight qualitative semi-structured interviews with patients. Patients with acute, chronic, and life threatening diseases were represented including surgical as well as medical patients. The values associated with autonomy are in many ways vitalising, but may become so dominant, autonomy seeking, and pervasive that the patient's dignity is affected. Three types of patient behaviour were identified. (1) The proactive patient: Patients feel that they assume responsibility for their own situation, but it may be a responsibility that they find hard to bear. (2) The rejected patient: proactive patients take responsibility on many occasions but very active patients are at risk of being rejected with consequences for their dignity. (3) The knowledgeable patient: when patients are health care professionals, the patient's right of self-determination was managed in a variety of ways, sometimes the patient's right of autonomy was treated in a dignified way but the opposite was also evident. In one way, patients are active and willing to take responsibility for themselves, and at the same time they are “forced” to do so by health care staff. Patients would like health professionals to be more attentive and proactive.
As there is no recipe for nursing as a moral practice, the nurse is obliged to risk herself in order to meet the ethical demand placed on her as a professional and to preserve the vulnerable trust essential to cooperation with the patient. On the basis of research and examples from interviews with six patients and six nurses, this article discusses examples of nurses’ moral irresponsibility stemming from a lack of consciousness about the power inherent in the relationship between nurse and patient. The challenge for the nurse is to understand that the trust and power embedded in his/her meeting with patients entails a demand for attentiveness.
This paper presents partial findings of a larger research project focusing on what it means to live with a chronic illness. Getting in harmony with oneself is a movement towards, and a form of, acceptance of the chronic suffering and disease. Some patients achieve this level of acceptance, while for others the obstacles of everyday life make this movement towards acceptance difficult. Achieving harmony with oneself is conditioned by the existence of hope and spirit of life/life courage and by the pressure of doubts on this hope. Doubts can shake this hope so that instead of moving towards acceptance, the patient drifts towards hopelessness and despair. The research design is qualitative and uses a phenomenological-hermeneutic approach. A total of 18 patients were interviewed, divided into three groups of six patients diagnosed with ‘type I’ diabetes, colitis ulcerosa and patients with coronary occlusion in the rehabilitation phase. The goal of the research was to derive patterns/themes common to the three diagnosed groups regarding the patients’ view of health and disease in connection with chronic illness and to elucidate the significance of this view for how the patients coped with everyday life. The research method is inspired by Paul Ricoeur.
Using three paradigm cases of persons living with Parkinson's Disease (PD) the authors make a case for augmenting and enriching a Cartesian medical account of the pathophysiology of PD with an enriched understanding of the lived body experience of PD, the lived implications of PD for a particular person's concerns and coping with the illness. Linking and adding a thick description of the lived experience of PD can enrich caregiving imagination and attunement to the patient's possibilities, concerns and constraints. The work of Merleau-Ponty is used to articulate the middle terms of the lived experience of dwelling in a lifeworld. Examining lived experience of embodied intentionality, skilled bodily capacities as highlighted in Merleau-Ponty's non-mechanistic physiology opens new therapeutic, coping and caregiving possibilities. Matching temporal rhythms can decrease the stress of being assisted with activities of daily living. For example, caregivers and patients alike can be taught strategies for extending their lived bodily capacities by altering rhythms, by shifting hyperactivity to different parts of the body and other strategies that change the perceptual experience associated with walking in different environment. A medical account of the pathophysiology of PD is nessessary and useful, but not sufficient for designing caregiving in ways that enrich and extend the existential skills of dwelling of persons with PD. The dominance of mechanistic physiology makes caregivers assume that it is the 'real discourse' about the disease, causing researchers and caregivers alike to overlook the equally real lived experience of the patient which requires different descriptive discourses and different sources of understanding. Lack of dialogue between the two discourses is tragic for patients because caregivers need both in order to provide attuned, effective caregiving.
The purpose of this article is to describe and develop knowledge about life phenomena in a life-philosophical and nursing context. Knowledge about life phenomena is part of a care-ethical understanding with a focus on relations. Life phenomena are to be understood as a generalized label for the various phenomena which are given with human existence. The Danish life philosophical tradition with the perspective of life as experienced has something to say in relation to a further refinement of the phenomenology of life phenomena. The refinement will be described as an ethical and existential understanding of the phenomena of nursing. The first part of the article takes a philosophical approach to the phenomenology of life phenomena. It attempts to locate life phenomena in relation to, respectively, needs, senses, and feelings. In order to maintain an overview, the attempt is made to separate needs, senses, and feelings, although in real life these are closely interwoven. The article also describes philosophy and life phenomena in relation to nursing as an empirical field. In nursing there is a risk that life phenomena become invisible to those whose task is to help the ill person adjust to a new life situation. For the nurse, it will be a continuing task, never completed, to develop a sensory-based, situation-determined attention to the patient. And the nurse must be continually aware of whether mere 'need-oriented' nursing is controlling her professional actions as a nurse. Taking a point of departure in the nurse's sensory, situationally determined attention, the last part of the article focuses on needs, senses, and feelings in connection with the nurse being able to direct her attention to the patient's life phenomena.