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“Beyond the Boundaries of Care Dependence”: A Phenomenological Study of the Experiences of Palliative Care Nurses
Abstract
Background:
Dependence is a common life experience and innate condition for human beings due to their bodily and relational essence, but in contemporary society, it has become a stressful condition. Care dependence is central to nursing, and patients with advanced cancer are often dependent on care. Understanding nurses' perceptions of care dependence can contribute to awareness of the impact it has on nurses.
Objective:
The aim of this study was to explore palliative care nurses' experiences and perceptions regarding patient dependence.
Methods:
Sixteen nurses taking care of dependent patients in a palliative care center in Rome were interviewed. Giorgi's descriptive phenomenological method was used.
Results:
Nurses caring for dependent patients transcend the boundaries of dependence. Care dependence is an experience of powerlessness and regression. A patient's life in dependence is precarious, as they have to overcome the daily limits of life. Taking care of dependent patients requires nurses to manage the unmanageable and to know and to embrace change from within in order to build positive relations of personal closeness and reciprocal self-giving.
Conclusions:
Nurses should be aware that self-transcendence and the consequent positive relations could make the difference in the experience of care dependence and promote personal growth for both patient and nurse. Positive and transcending relationships can transform care dependence into the opportunity to find meaning and purpose in life.
Implications for practice:
The study highlights what nurses feel in caring for dependent patients. Understanding nurses' perceptions is important to delineate a proper caring for dependent patients.
... In total, 33 papers from 31 studies published between 1989 and 2023, were included, with three papers reporting different components of the same study. Studies were 55 Hong Kong, 56 Iran, 57 Italy, 58 Japan, 59 Poland, 60 Portugal, 61 South Korea, 62 Taiwan, 63 and Zambia 64 (Table 3). ...
... 42,43,46,54 Nurses reported that in order to respond to patients needs authentically, familiarity was necessary to increase interpersonal connections, which in turn, improved their ability to anticipate and respond to patient's needs. 50,51,56,58 This familiarity was described by nurses as beyond superficial, being like family, 56 sharing something of themselves, 38,41 and reciprocal self-giving. 58 Familiarity was also explained by a patient as: Everybody gets to know you and they know your illness and they know how to treat you and take an interest in you personally. ...
... 50,51,56,58 This familiarity was described by nurses as beyond superficial, being like family, 56 sharing something of themselves, 38,41 and reciprocal self-giving. 58 Familiarity was also explained by a patient as: Everybody gets to know you and they know your illness and they know how to treat you and take an interest in you personally. (p. ...
Background
Nurse-patient relationships are an integral component of person-centred palliative care. Greater understanding of how nurse-patient relationships are fostered and perceived by patients and nurses can be used to inform nursing practice.
Aim
To systematically identify and synthesise how nurse-patient relationships are fostered in specialist inpatient palliative care settings, and how nurse-patient relationships were perceived by patients and nurses.
Design
Integrative review with narrative synthesis. The review protocol was registered with PROSPERO (CRD42022336148, updated April, 2023).
Data Sources
Five electronic databases (PubMed, CINAHL Complete, Medline, Web of Science and PsycINFO) were searched for articles published from their inception to December 2023. Studies were included if they (i) examined nurse and/or patient perspectives and experiences of nurse-patient relationships in specialist inpatient palliative care, (ii) were published in English in a (iii) peer-reviewed journal. The Mixed Methods Appraisal Tool was used to evaluate study quality. Data were synthesised using narrative synthesis.
Results
Thirty-four papers from 31 studies were included in this review. Studies were mostly qualitative and were of high methodological quality. Four themes were identified: (a) creating connections; (b) fostering meaningful patient engagement; (c) negotiating choices and (d) building trust.
Conclusions
Nurses and patients are invested in the nurse-patient relationship, benefitting when it is positive, therapeutic and both parties are valued partners in the care. Key elements of fostering the nurse-patient relationship in palliative care were revealed, however, the dominance of the nurses’ perspectives signifies that the nature and impact of these relationships may not be well understood.
... From the nurses' perspective, it was crucial to know the patient as a person (Blomberg et al., 2015;Hedman et al., 2019;Murphy, 2007;Piredda et al., 2020;Radwin et al., 2005). Acknowledging the patient as an individual and understanding their perspective were vital to caring (Gustafsson et al., 2009;Hedman et al., 2019). ...
... The studies included in this review underscored the variety of clinical practices and the complexity of nurses' practice, which involved the handling of complicated patient situations, various environmental conditions and often a lack of resources (Andersson et al., 2015;Hofhuis et al., 2008;Irvine, 2000;McCallum & McConigley, 2013;Piredda et al., 2020;Tarberg et al., 2020;Wassenaar et al., 2015). ...
... The reviewed studies evoked caring as a relationship in which both patient and nurse contribute to the caring encounter (Dostálová et al., 2022;Hedman et al., 2019;Leipert et al., 2011;Piredda et al., 2020;Sharp et al., 2016;Turjamaa et al., 2014). Patients and nurses in home-care settings appreciated this strong relationship. ...
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.
... Zorgverleners die een bewuste keuze hebben gemaakt voor de palliatieve zorg halen doorgaans veel voldoening uit hun werk. Ze zien de palliatieve zorg als een discipline die veel ruimte biedt voor persoonlijke groei (Beaune et al., 2018;Moreno-Milan et al., 2018;Koh et al., 2020;Piredda et al., 2020;Parola et al., 2017). Niettemin komt (mentale) overbelasting vaak voor onder zorgverleners in de palliatieve zorg. ...
... Zorgverleners die een bewuste keuze hebben gemaakt voor werken in de palliatieve zorg ervaren het als een werkveld dat veel ruimte biedt voor persoonlijke groei en geven aan daar veel voldoening uit te halen, juist ook door het begeleiden van de stervensfase (Beaune et al., 2018;Moreno-Milan et al., 2018;Koh et al., 2020;Piredda et al., 2020;Parola et al., 2017). Desondanks kan de verhoogde blootstelling aan dood en sterven het evenwicht van zorgverleners in de palliatieve zorg onder druk zetten, met name vanwege de psychologische en existentiële belasting die hiermee gepaard kan gaan (Peters et al., 2003, Maffoni et al., 2018Dijxhoorn et al., 2020;O'Mahony et al., 2016;Gillman et al., 2015;Slocum-Gori et al., 2011;Klein et al., 2018;Alkema et al., 2008). ...
This knowledge synthesis on 'The resilient caregiver in palliative care' was commissioned by ZonMw, Palliantie.Meer dan Zorg. Recommendations for policy, research, education, and practice are made on how to promote resilience in caregivers providing palliative care.
... Indeed, patients' experiences are highly influenced by the type of nursing care received: positive care relationships can foster personal development and lead patients to find new balances, while negative care relationships can worsen helplessness and suffering (Piredda et al., 2015). Furthermore, nurses taking care of patients with advanced cancer in palliative care underlined the role of the nurse-patient relationship in positively or negatively influencing the patients' condition of dependence (Piredda et al., 2019). ...
... Data gained through the Care DEeP Questionnaire can raise nurses' awareness of dependent patients' emotional and relational needs, and guide them in planning and enacting strategies aimed at satisfying them. This can generate a virtuous circle, to improve both patients' and nurses' quality of life (Piredda et al., 2019). ...
Objective
This multicentre study aimed to develop a measure of the perception of care dependence in patients diagnosed with cancer and to test its psychometric properties.
Methods
The questionnaire was developed based on findings emerged from a meta‐synthesis and from qualitative studies conducted in three hospitals in Italy. The draft questionnaire was tested for face and content validity and pilot‐tested with patients. The questionnaire was completed by care‐dependent patients with cancer. Test‐retest was conducted to verify stability. Exploratory factor analysis (EFA) was performed using a Maximum Likelihood robust estimator.
Results and conclusion
The Scale‐Content Validity Index was 0.92. The final 15‐item questionnaire was completed by 208 patients admitted to two hospitals. The EFA yielded a two‐factor model including a positive and a negative perception of care dependence. Factor score determinacy coefficients, Cronbach's alpha coefficients, composite reliability coefficients and Intraclass Correlations Coefficients yielded satisfactory results confirming internal consistency and stability. The hedonic balance score is also available as a single indicator of subjective well‐being. The study provides initial validation of the Care DEeP Questionnaire that can be used by cancer nurses to assess positive and negative patient experiences with care dependence and to personalise and improve their care.
... In end-of-life care, it is important to think of care dependence as a flexible process, governed by increased vulnerability and deteriorating conditions, as well as specific procedures, such as palliative sedation. While alleviating distress resulting from symptoms rather than restoring independence is the core of palliative care, fostering significant interpersonal relationships capable of encouraging adaptation to dependence can be of great value for improving patients' quality of life (Piredda et al, 2019). ...
... There are ways to help understand how nurses can better relate to dependent patients with palliative care needs while considering different modes of adaptation to dependence. For instance, Piredda et al (2019) suggested that nurses can practise self-transcendence to establish close relationships with patients. However, this also means recognising the amount of emotional labour that is embedded in palliative nursing and address its stressful effects. ...
... They have to be ready to give themselves to patients in order to be able to accept their opinions even when they conflict with their own wishes to care for them, and therefore to promote compassion by "mindful practice" [32]. This way of giving themselves to patients in order to be able to go beyond their own personal limits and views-that is self-transcendence-to establish positive connections with dependent patients is crucial for caring, in accordance with a previous study conducted with palliative care nurses [33]. Nurses in this study expressed a wish to be present in crucial moments of patients' lives, and described their involvement in the relationship with the patients as itself a kind of dependence [30]. ...
... They are afraid of falling into cynicism or emotional detachment as manifestations of burnout [34]. Self-transcendence can save nurses from this risk [35], and is critical for nurses to understand the patients' negative feelings, such as sense of insufficiency and of being a burden to others [12,33] that are common in dependent patients. Thank to self-transcendence, nurses react to patients' feelings by adapting their care and behaviours in order to help them to experience their condition peacefully. ...
Purpose
Patients with advanced cancer are likely to face increasing levels of care dependence. Adult patients who become care dependent on others can experience this condition as one of suffering and humiliation. The nurse-patient relationship plays a key role in the experience of dependence. Understanding patients’ and nurses’ perceptions of care dependence is crucial to addressing the impact it has on the lives of both. The aim of this study is to explore the experiences of patients with cancer and nurses caring for them.
Methods
A multicentre qualitative study was conducted in Italy using semi-structured interviews with patients with advanced cancer admitted to 3 hospitals, and 9 focus groups with nurses working in oncology wards of 2 hospitals. Data were analysed with inductive content analysis.
Results
Thirty-two patients and 44 nurses participated in the study. Three common themes were identified: within dependence, the relationship is a lifeline; dependence is influenced by internal and external factors and dependence generates changes. Dependence impacts on patients’ and nurses’ lives and implies a process of personal maturing for both. Patients learn the humility to ask for help by exposing their vulnerability. Nurses become aware that a trusting relationship helps patients to accept dependence, and they learn to self-transcend in order to build it.
Conclusions
Striving to build positive relationships implies a change in nurses’ and patients’ lives. In this way, they come to understand important aspects of life and find meaning in difficult situations. Further studies should explore also homecare settings and patients’ families.
... During the pandemic, nurses have delivered more complicated nursing care. However, nurses have opportunities for self-actualization by being actively involved in care during the pandemic (Kang et al., 2020;Piredda et al., 2020). With a sense of responsibility towards the profession, nurses receive positive enthusiasm and support from various parties, which encourage them to stay focused on their work as nursing care providers (Kang et al., 2020). ...
The COVID-19 pandemic created an emergency and challenging situation, especially for nurses, who have experienced feelings including fear and questions concerning their job responsibilities and professional ethics. They needed to maintain safety on the basis of their knowledge and skills. This study aimed to explore nurses’ experiences related to the pandemic. This research was conducted by using qualitative research with a descriptive phenomenological design. The participants were 15 nurses on duty in COVID-19 units at hospitals and who were delivering or had delivered direct care to patients with COVID-19. Data were collected from in-depth interview and analyzed with Colaizzi technique. The nurses experienced psychological disorders while they were performing their roles through the professional care models, and coping with the management of their workload during the pandemic. These circumstances were caused by the responsibility of nurses to give all forms of support and protection to patients. The study has shown that nurses faced some challenges regarding nursing workload to provide nursing care during the pandemic. Abstrak Melampaui Batas Asuhan Keperawatan: Sebuah Studi Fenomenologi. Pandemi COVID-19 menimbulkan situasi darurat yang menantang, terutama bagi perawat yang mengalami berbagai perasaan dalam menghadapi pandemi termasuk rasa takut, tanggung jawab pekerjaan, dan etika profesi. Perawat perlu menjaga keselamatan dengan pengetahuan dan keterampilan mereka. Penelitian ini bertujuan untuk mengetahui pengalaman perawat terkait pandemi. Penelitian ini dilakukan dengan menggunakan metode kualitatif dengan desain deskriptif fenomenologi. Partisipan dalam penelitian ini adalah 15 perawat yang bertugas di unit COVID-19 di rumah sakit dan sedang atau pernah memberikan perawatan langsung kepada pasien COVID-19. Data dikumpulkan melalui wawancara mendalam dan dianalisis dengan teknik Colaizzi. Penelitian ini menemukan gangguan psikologis pada perawat dalam menjalankan perannya, manajemen koping terkait beban kerja keperawatan, dan model asuhan profesional selama masa pandemi. Kondisi ini disebabkan oleh tanggung jawab perawat dalam memberikan segala bentuk dukungan dan perlindungan terhadap pasien. Penelitian ini menemukan bahwa perawat menghadapi berbagai tantangan dalam menjalankan beban kerja mereka untuk memberikan asuhan keperawatan selama masa pandemi. Kata Kunci: gangguan psikologi, manajemen koping, mekanisme perawat, model asuhan keperawatan
... Care dependence referred to one being dependent on someone for something and is also described as the nurse-patient relationship, which results from a person's decrease in self-care and simultaneous increase in dependence on nursing care (Piredda et al., 2020). Care dependence as the central to nursing was associated with increased mortality risk in elderly persons (Piredda et al., 2015). ...
Aim:
Care dependence has been scarcely investigated in coronary heart disease patients after percutaneous coronary intervention. This study aimed to investigate the association between frailty, self-efficacy, combined effects of frailty and self-efficacy, mental health, and care dependence in coronary heart disease patients after percutaneous coronary intervention.
Design:
Cross-sectional study.
Methods:
Data from 400 patients after percutaneous coronary intervention were collected from 2017-2020. Logistic regression model and mediating analysis were used to identify the association between frailty, self-efficacy, combined effects of frailty and self-efficacy, and care dependence.
Results:
Patients with frailty and self-efficacy tended to have severe care dependence symptoms. There was no correlation between frailty symptoms, self-efficacy, and care dependence in patients without symptoms of anxiety or depression. But in patients with anxiety or depression symptoms, there is a strong correlation between frailty symptoms, lower self-efficacy, and care dependence. Mental health played an inhibitory effect on frailty and care dependence.
... 5 Nurses often help patients with cancer discover meaning in their lives, particularly if there is a positive and close relationship between them. 6 Unfortunately, however, nurses also experience emotional distress while caring for dying cancer patients. 7 As oncology nurses attempt to alleviate a patient's physical and spiritual pain, they often experience symptoms of psychological burden such as anxiety, sorrow, pain, agony, helplessness, and hopelessness. ...
Background:
Cancer is a leading cause of death worldwide, and most patients with cancer in South Korea die in hospitals. Oncology nurses experience physical, emotional, and occupational challenges associated with the psychological burden of caring for dying patients.
Objective:
This study explored the coping strategies used by oncology nurses to deal with the psychological burden of patient deaths.
Methods:
In this descriptive qualitative study, 10 oncology nurses who had recently experienced a patient's death were recruited via snowball sampling. All were female, with a mean age of 32.9 years (range, 27-44 years), and their mean working duration was 9.9 (range, 3-23) years. Participants were interviewed individually face-to-face 3 times, with each interview lasting 1 to 1.5 hours.
Results:
Oncology nurses coped with the psychological burden of a patient's death in the following 4 ways: (a) avoiding patient deaths to the extent possible, (b) reflecting upon the meaning of life and death, (c) suppressing their emotional distress over the patient's death, and (d) becoming kinder and more caring toward people around them.
Conclusions:
The findings suggest that oncology nurses struggle to cope with the psychological burden of patient deaths. Oncology nurses are affected both negatively and positively by experiencing death as they provide end-of-life care.
Implications for practice:
Oncology nurses need education or counseling to reduce the psychological burden of caring for dying patients with cancer. Hospital administrators need to continuously identify ways to reduce the psychological burden of oncology nurses providing end-of-life care.
... Thus, nurses need to recognize and confront their own perceptions and attitudes toward care practices. Various studies have been made of palliative and end of life care in nursing, but there are only a few phenomenological qualitative research regarding the subject (Keane et al., 2020;Piredda et al., 2020). ...
The aim of this study was to describe the experiences and practices of nurses providing palliative and end of life care. The study was conducted in the palliative care unit of a territory hospital in Turkey. The sample consisted of 11 nurses who had been working as palliative care nurses for at least one year. The face to face interview method was used to collect data, with a semi-structured in-depth individual interview. 5 main themes and 24 sub-themes were emerged in relation to the experiences and practices of the nurses. The majority of participant nurses pointed that inadequacy in the number of nurses, secondary nursing care activities, refusal of treatment, cultural and ethical problems were barriers in the provision of nursing care. They frequently experienced ethical issues when caring for end of life patients, and for this reason they felt the need for ethics counselling which they could consult.
... Based on these perceptions, some participants reconsidered whether it was worthwhile to remain in nursing. (Piredda et al., 2019), our findings also pointed out that transitioning from novice to expert in caring for terminally ill patients is not such a "natural" process. Despite having limited knowledge about EOL care, many nurses in our study acknowledged the importance of valuing dying patients' dignity and fulfilling their professional obligation of "Taking patients' needs as the priority," "Empathizing with dying patients," and "Taking responsibility for better care," ...
Professional values reflect nurses' understanding of how to deliver professional care, which might influence nurses' attitudes and caring behaviors during end-of-life care. However, limited research has been conducted to explore nurses' experiences of professional development during end-of-life care, and theoretical explanations are scarce about how nurses enact their professional values during the caring process. This study explored the social process of professional values involved in end-of-life care in the Chinese cultural context by adopting a constructivist grounded theory approach. Twenty semi-structured in-depth interviews with 15 nurses from three hospitals in southeastern China were conducted. A theoretical framework emerged when focusing on the social process of "reframing the meaning of life and professional values" to facilitate professional care for terminally ill patients. Three main categories were sequentially identified as "recognizing the dilemmas when caring for terminally ill patients," "applying strategies to deal with values conflict," and "reconstructing values." This theoretical framework may be applied as a practical framework for equipping nurses with effective strategies to cultivate professional values, including the provision of adequate end-of-life knowledge, and a supportive workplace environment.
... We do so by exploring how dependency surfaces as a problem for care professionals. Empirical studies indicate that nurses think of their patient's dependency as a demanding responsibility (Piredda et al., 2020;. Our aim here is to investigate how care professionals navigate this responsibility in practice. ...
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.
Purpose
An ageing population and a global pandemic has placed greater demands on palliative care services. Numerous studies describe the patient experience in palliative care, however, few explore the healthcare professional’s experience of caring in this setting. This study explored the emotional challenges faced by palliative care professionals working in adult hospice services in Ireland.
Design/methodology/approach
A narrative phenomenological approach was adopted, using interpretative phenomenological analysis to analyse results from five participants’ semi-structured interviews.
Findings
The type of challenge experienced reflected the impact it had on the participant’s emotional wellbeing. Challenges perceived as achievable contributed to high levels of emotional wellbeing. These challenges often offered the opportunity for skill development and elicited positive feelings. Challenges perceived as uncontrollable negatively impacted the professional’s emotional wellbeing and increased their risk of burnout. Examples of this included the shift in service provision and professional expectations. The challenges palliative care professionals experience on a daily basis can negatively or positively impact their emotional wellbeing.
Conclusion
Overall, this study highlighted challenges and their impacts experienced by palliative care professionals, illustrating key areas for improvement to prioritise staff wellbeing.
Background
Nursing care dependency is a key, yet under‐studied, nursing phenomenon. Patients in intensive care units are highly dependent on nursing care. Patients find dependency challenging, experiencing feelings of powerlessness and shame. The nurse–patient care relationship can influence patients' perception of dependency. Understanding how nurses experience their care for dependent patients is crucial, as nurses might not always grasp the impact of their actions on patients’ dependency experiences.
Aim
To explore and interpret ICU nurses' perceptions of patients' nursing care dependency and their experiences in caring for nursing care‐dependent patients.
Methods
A qualitative interpretative phenomenological study inspired by Merleau‐Ponty's philosophical stance was conducted using focus groups with nurses who had been caring for adult patients for at least 6 months in ICUs of two hospitals. Data analysis followed Smith et al.'s guidance. Researchers immersed themselves in the transcripts, noted individual's experiences before transitioning to shared insights, coded significant phrases and generated themes and superordinate themes.
Results
Four focus groups were conducted with 18 nurses with widely ranging ages and work experience. Four superordinate themes emerged: ‘Time and context define dependency’, ‘Empathetic relationships help nurses understand patients’ experience of dependency’, ‘Trusting nurse‐patient relationships change the dependency experience’ and ‘Nurses' skills help patients to recover independence’.
Conclusion
This study increases critical care nurses' awareness of the overlooked phenomenon of caring for nursing care dependent patients and offers them an opportunity to reflect on their care for dependent patients and adapt it to patients' experiences. Further studies are needed with nurses and patients in different ICUs, cultures and countries, to gain a broader picture of experiences of nursing care dependency.
Relevance to Clinical Practice
ICU nurses need strong relational skills to offer high‐quality care for dependent patients, facilitating meaningful nurse–patient relationships based on empathy and trust. These relationships can significantly impact the patient's experience of dependence.
Background:
Empirical studies suggest that gratitude positively influence the quality of life of palliative patients and relatives. However, the literature is marked by a lack of conceptual clarity about what gratitude is and whether it can bring about individual and social benefits.
Aim:
This paper explores how palliative care patients and relatives understand gratitude, how discursive representations of gratitude may affect their positions, perceptions and relations, and how to conceptualise gratitude in the palliative context.
Design:
We examine 33 gratitude letters written by patients and relatives and 25 semi-structured interviews conducted as part of a pilot gratitude intervention study. We use a qualitative approach, thematic analysis, within a conceptual framework of discourse analysis.
Settings/participants:
Data were collected from 23 patients and 13 relatives recruited through three hospital palliative care services in French-speaking Switzerland.
Results:
Participants articulate gratitude in five ways: (1) appreciating others; (2) love; (3) need to reciprocate; (4) appreciating the little things; (5) solace amid serious illness. While some of these representations are sources of positive emotions and outlook, wellbeing and hope, others may confirm self-perceptions of powerlessness and burden. These results support a tridimensional conceptualisation of gratitude in palliative care as source of individual benefits, valuing closest relationships and moral obligation.
Conclusion:
Our study suggests that gratitude is a key to a good (end of) life, whilst highlighting potential negative effects. It could help healthcare professionals to better understand what gratitude means to patients and relatives, which may facilitate awareness and fostering of gratitude in palliative care.
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.
Background
The number of patients using palliative care services, particularly residential hospices, is increasing. Policymakers are urging these services to reflect on the most effective organizational strategies for meeting patients’ complex care needs.
Aim
To analyse the predictive power of staffing, structure and process indicators towards optimal control of patients’ clinically significant symptoms over time.
Design
Secondary analysis of data from a multicentre prospective longitudinal observational study (PRELUdiHO) collected between November 2017 and September 2018.
Setting/participants
Adult patients (n=992) enrolled in 13 Italian residential hospices.
Methods
Two generalized estimating equations logistic models were built, both with number of hospice beds and length of stay as independent variables as well as, in one case, patient-to-healthcare worker ratios, and, in the other, health professionals’ qualification levels. Dependent variables were six not clinically significant (score<4) symptoms: pain, nausea, shortness of breath, feeling sad, feeling nervous, and ‘how you feel overall’, according to the Edmonton Symptom Assessment System revised (ESAS-r) scale.
Results
The generalized estimating equations indicators on staff revealed the following ‘optimal’ model: Patient-to-Physician ratio (5.5:1–6.5:1); Patient-to-Nurse ratio (1.5:1–2.7:1); Patient-to-Nurse-Assistant ratio (4.1:1–6.3:1); with the most balanced staff composition including 19% physicians, 23% nurse assistants, and 58% registered nurses; hospice beds (12–25); length of stay (median=12 days). This model predicted an up to four times greater likelihood of controlling all six ESAS-r symptoms over time. The generalized estimating equations model on the educational level of physicians and registered nurses showed that it was significantly associated with optimal patients’ symptom control during the entire hospice stay.
Conclusions
This study showed the exact skill-mix composition and proportions of palliative care team able to ensure optimal control of patients’ symptoms. The added value of physicians and nurses with a qualification in palliative care in terms of better patient outcomes reaffirmed the importance of education in guaranteeing quality care. Hospices with 12–25 beds, and recruitment methods guaranteeing at least 12-day stay ensured the most propitious organizational environment for optimal management of clinically significant symptoms. The transferability of these results mainly depends on whether the skills of health professionals in our 'ideal' model are present in other contexts.
Our results provide policymakers and hospice managers with specific, evidence-based information to support decision-making processes regarding hospice staffing and organization. Further prospective studies are needed to confirm the positive impact of this ‘optimal’ organizational framework on patient outcomes.
Background:
The association between C-reactive protein (CRP) level, symptoms, and activities of daily living (ADL) in advanced cancer patients is unclear.
Methods:
Secondary data analysis of a multicenter prospective cohort study consisted of 2426 advanced cancer patients referred to palliative care settings was conducted to examine the cross-sectional relationships between CRP level, symptoms, and ADL disabilities. Laboratory data, symptoms, ADL, and manual muscle testing (MMT) results were obtained at baseline. Participants were divided into four groups: low (CRP < 1 mg/dl), moderate (1 = < CRP <5 mg/dl), high (5 = < CRP < 10 mg/dl), and very high CRP (10 mg/dl = < CRP). The proportions of eight symptoms, five ADL disabilities, and three categories of MMT according to the CRP groups were tested by chi-square tests. Multiple-adjusted odd ratios (ORs) were calculated by using ordinal logistic regression after adjustment for age, gender, site of primary cancer, metastatic disease, performance status, chemotherapy, and setting of care.
Results:
A total of 1702 patients were analysed. Positive rates of symptoms and ADL disabilities increased with increasing CRP level. In the very high-CRP group, rates of positivity for anorexia, fatigue, and weight loss were 89.8%, 81.0%, and 79.2%, respectively, and over 70% of patients received assistance for bathing, dressing, going to the toilet, and transfer. The grade of MMT also deteriorated with increasing CRP level. Adjusted ORs for the accumulated symptoms significantly increased with increasing CRP level in the moderate-CRP, high-CRP, and very high-CRP groups [1.6 (95% confidence interval 1.2-2.0), P < 0.001; 2.5 (1.9-3.2), P < 0.001; 3.5 (2.7-4.6), P < 0.001, respectively]. Adjusted ORs for the accumulated ADL disabilities significantly increased in the very high-CRP groups [2.1 (1.5-2.9), P < 0.001].
Conclusions:
Associations between CRP level, symptoms, and ADL were observed in advanced cancer patients receiving palliative care.
Research and theory on 'dependency' and 'care-giving' have to date proceeded along largely separate lines, with little sense that they are exploring and explaining different aspects of the same phenomenon. Research on 'care', initially linked to feminism during the early 1980s, has revealed and exposed to public gaze what was hitherto assumed to be a 'natural' female activity. Conversely, disability activists and writers who have promoted a social model of disability have seen the language of and the policy focus upon 'care' as oppressive and objectifying. 'Dependency' is an equally contested concept: sociologists have scrutinised the social construction of dependency, politicians have ascribed negative connotations of passivity, while medical and social policy discourse employs the term in a positivist sense as a measure of physical need for professional intervention. Autonomy and independence, in contrast, are promoted as universal and largely unproblematic goals. These contrasting perspectives have led social theory, research and policies to separate and segregate the worlds of 'carers' from those for whom they 'care'. Drawing on the work of Kittay and others, this paper explores the ways in which sociological perspectives can develop new understanding of the social contexts of 'care' and 'dependence'.
This study examines the meaning of dependency on care as experienced by intensive care patients. Literature on the subject is sparse, but research from nonintensive settings shows that dependency is often experienced negatively. The study is based on in-depth qualitative semistructured interviews with three former patients characterized as narratives. The analysis is inspired by a phenomenological hermeneutical method. The study has found that dependency is experienced as difficult and that the experience seems to be attached to the relationship to oneself. Patients feel powerless and experience shame, their understanding of self is threatened, and they fight for independence in the course after intensive care. The findings might be influenced by the study being conducted in a Western country setting, where independence is valued. They can be used as means of reflection on nursing practice and matters such as communication and patient participation.
Cancer incidence and mortality estimates for 25 cancers are presented for the 40 countries in the four United Nations-defined areas of Europe and for the European Union (EU-27) for 2012.
We used statistical models to estimate national incidence and mortality rates in 2012 from recently-published data, predicting incidence and mortality rates for the year 2012 from recent trends, wherever possible. The estimated rates in 2012 were applied to the corresponding population estimates to obtain the estimated numbers of new cancer cases and deaths in Europe in 2012.
There were an estimated 3.45 million new cases of cancer (excluding non-melanoma skin cancer) and 1.75 million deaths from cancer in Europe in 2012. The most common cancer sites were cancers of the female breast (464,000 cases), followed by colorectal (447,000), prostate (417,000) and lung (410,000). These four cancers represent half of the overall burden of cancer in Europe. The most common causes of death from cancer were cancers of the lung (353,000 deaths), colorectal (215,000), breast (131,000) and stomach (107,000). In the European Union, the estimated numbers of new cases of cancer were approximately 1.4 million in males and 1.2 million in females, and around 707,000 men and 555,000 women died from cancer in the same year.
These up-to-date estimates of the cancer burden in Europe alongside the description of the varying distribution of common cancers at both the regional and country level provide a basis for establishing priorities to cancer control actions in Europe. The important role of cancer registries in disease surveillance and in planning and evaluating national cancer plans is becoming increasingly recognised, but needs to be further advocated. The estimates and software tools for further analysis (EUCAN 2012) are available online as part of the European Cancer Observatory (ECO) (http://eco.iarc.fr).
Copyright © 2013 Elsevier Ltd. All rights reserved.
Research and theory on ‘dependency’ and ‘care-giving’ have to date proceeded along largely separate lines, with little sense that they are exploring and explaining different aspects of the same phenomenon. Research on ‘care’, initially linked to feminism during the early 1980s, has revealed and exposed to public gaze what was hitherto assumed to be a ‘natural’ female activity. Conversely, disability activists and writers who have promoted a social model of disability have seen the language of and the policy focus upon ‘care’ as oppressive and objectifying. ‘Dependency’ is an equally contested concept: sociologists have scrutinised the social construction of dependency; politicians have ascribed negative connotations of passivity; while medical and social policy discourse employs the term in a positivist sense as a measure of physical need for professional intervention. Autonomy and independence, in contrast, are promoted as universal and largely unproblematic goals. These contrasting perspectives have led social theory, research and policies to separate and segregate the worlds of ‘carers’ from those for whom they ‘care’. Drawing on the work of Kittay and others, this paper explores the ways in which sociological perspectives can develop new understanding of the social contexts of ‘care’ and ‘dependence’.
Hospice and palliative medicine (HPM) is now an American Board of Medical Specialties-recognized subspecialty, and many physicians are choosing it as a career. There is little written about recognition and prevention of burnout or physician self-care in this challenging and ever-evolving field.
We conducted a qualitative online survey of 40 HPM physicians practicing in the United States and asked them to comment on their strategies for avoiding burnout and finding fulfillment in palliative medicine. Responses were coded into thematic classes by commonalities.
Thirty of 40 HPM physicians (19 males, 11 females) surveyed responded in full. Each listed between 1 to 7 strategies (median 4 per respondent) they felt to be important in preventing burnout that were placed in 1 of 13 thematic classes. Physical well-being was the most common strategy reported (60%), followed by professional relationships (57%), taking a transcendental perspective (43%), talking with others (43%), hobbies (40%), clinical variety (37%), personal relationships (37%), and personal boundaries (37%). "Time away" from work (27%), passion for one's work (20%), realistic expectations and use of humor and laughter (13% each), and remembering patients (10%) were cited less frequently.
HPM physicians report using a variety of strategies to promote their personal well-being suggesting a diversified portfolio of wellness strategies is needed to deal with the challenges of palliative care medicine. Additional studies are needed to help HPM recognize burnout in their practices and among their colleagues, and to determine how to help future HPM physicians develop individualized strategies to promote personal wellness and resilience.
In India, many are participating in a shift from the intergenerational family as the central site of aging and elder care, to an increasing reliance on individual selves, the state, and private institutions. Over recent years, the nation has witnessed a proliferation of old age homes
and a new industry of aging-focused institutions offering social, emotional, and practical support for older persons living alone. This article examines Indians' perspectives on elder care and the significant changes underway in their nation and world. Qualitative ethnographic fieldwork was
conducted primarily in Kolkata (formerly Calcutta) among older persons, their families, and community members, with a focus on old age homes. Beliefs and practices surrounding competing models of elder care—such as in the family or in old age homes—speak not only to elder care
per se, but also to broader cultural-moral visions of the relationship among persons, families, and states, and the nature and aims of the human life course.
A central focus of nursing is in understanding and facilitating the human capacity for well-being in the context of difficult health-related experiences. The nursing Theory of Self-Transcendence was created from a developmental perspective of human-environment processes of health. Self-Transcendence Theory originated from an interest in understanding how people transcend adversity and the relationship among psychosocial development, mental health, and well-being. The theory is applicable to individuals across the life span regarding challenging life experiences, with supporting empirical findings from research with those in adolescence, adulthood, aging, and end of life. The purpose of the middle range Theory of Self-Transcendence is to provide a framework for inquiry and practice regarding the promotion of well-being in the midst of difficult life situations. Self-transcendence is a concept relevant to nursing. Themes of self-transcendence are evident in other nursing theories. Self-transcendence is also congruent with philosophical views of nursing.
It is crucial that palliative care nurses feel competent to
practice their profession in accordance with ethical
principles, to personalize care, to remain sensitive, to
ensure respect, and to communicate effectively. The aim
of this study was to verify that higher levels of perceived
professional competency predict better individual and
organizational outcomes, such as job satisfaction and
organizational citizenship behavior. An online cross-sectional
survey was conducted with 107 Italian palliative care
nurses. Structural equation modeling technique was
used for data analysis. The model fitted the data well.
Professional competency was positively associated with
both job satisfaction (" = 0.39) and organizational
citizenship behavior (" = 0.53). The more confidence
palliative care nurses have in their professional competency,
the more they are satisfied with their job and engage in
organizational citizenship behavior. Fostering professional
competency in palliative nursing can help not only patients
and their families but also the nurses themselves, the
organization, and their coworkers.
Providing palliative care involves serious challenges for nurses, such as end-of-life decisions, contact with people's suffering and dying, and increased risk of burnout. However, studies have revealed that the burnout level of health professionals working in palliative care is lower than that of health professionals working in other settings. This study aimed to describe the lived experiences of nurses caring in a palliative care unit. A phenomenological descriptive study was undertaken. Nine nurses were recruited from a palliative care unit in Portugal. Data were collected using individual interviews and analyzed following the method of Giorgi. Five themes reflect the essence of the lived experience: (1) experience centered on the relationship with the other (ie, the patient and the family), (2) experience centered on the relationship with one's own self, (3) exhausting experience, (4) rewarding experience, and (5) the team as a pillar. These findings can be valuable for understanding the challenges and strategies experienced by nurses caring in palliative care and for designing interventions that focus on reducing the risk of burnout among nurses - not only those working in palliative care but also those working in other contexts who experience regular contact with suffering and death. © 2018 by The Hospice and Palliative Nurses Association. All rights reserved.
Care dependence can be associated with suffering and humiliation. Nurses' awareness of patients' perception of care dependence is crucial to enable them in helping the dependent persons. This study aimed to describe adult patients' experience of nursing care dependence.
A metasynthesis was conducted to integrate qualitative findings from 18 studies published through December 2014 on adult patients' experiences of care dependency. Procedures included the Johanna Briggs Institute approach for data extraction, quality appraisal, and integration of findings.
The experience of dependence revealed the concept of the embodied person, particularly in relation to care of the physical body. The relationship between the individual and nurses within the context of care had a major impact for dependent patients. When the care relation was perceived as positive, the experience led to the development of the person in finding new balances in life, but when it was perceived as negative, it increased patient' suffering.
Care dependence is manifested mostly as bodily dependence and is consistent with its relational nature. The nurse-patient relationship is important to the dependent patients' experience.
A greater understanding of patients' experiences of dependence is crucial to enable nurses in improving care and decreasing patient suffering.
© 2015 Sigma Theta Tau International.
Increasing burden of cancer in Europe and socio-demographic trends imply that more cancer patients will face high levels of dependency. Care dependency is often perceived as a distressing experience by cancer patients who are concerned about becoming a burden to others. The experience of care dependence has been scarcely investigated in advanced cancer patients, especially in the hospital setting. This study aimed at describing advanced cancer patients' experiences of care dependence in hospital and of the factors perceived by them as contributing to decrease or increase this dependence.
The study used a descriptive phenomenological approach based on Husserl's (1913) life world perspective. Data collection and analysis followed Giorgi's (1997) five basic methodological steps. Data were gathered by semi-structured interviews with thirteen advanced cancer adult inpatients of a teaching hospital. The interviews were audio-recorded and the recordings transcribed word for word.
Three themes emerged: 'dependency discovers new meanings of life', 'active coping with dependency' and 'the care cures the dependent person'. The essential meaning of care dependency was the possibility to become aware of being a person as both an object and subject of care.
Dependence appears as an experience with strong relational connotations, which enable patients to see differently their life, themselves, the world and others. Dependency is revealed as a natural experience, only partly in accordance with previous studies. Deeper insight into the meaning patients attach to care dependency can enable nurses to better meet the patient's needs, e.g. by improving caring relationships with patients.
Copyright © 2015 Elsevier Ltd. All rights reserved.
The author explains that his background was in experimental psychology but that he wanted to study the whole person and not fragmented psychological processes. He also desired a non-reductionistic method for studying humans. Fortunately he came across the work of Edmund Husserl and discovered in the latter's thought a way of researching humans that met the criteria he was seeking. Eventually he developed a phenomenological method for researching humans in a psychological way based upon the work of Husserl and Merleau-Ponty. This article briefly describes the method.
En cuidados paliativos la relación enfermera-paciente supone una parte indispensable del cuidado, ya que mediante ella se puede dar una respuesta humana al sufrimiento que experimenta la persona enferma. Hay una falta de consenso en la literatura a la hora de aludir la relación enfermera-paciente, por lo que es un concepto nebuloso. A pesar de ello, es esencial comprender la relación enfermera-paciente para poder proporcionar unos cuidados de calidad al paciente con enfermedad avanzada y terminal.
PurposeThe purpose of this study was to clarify the concept of continuity of care during the end of life with a focus on the patient's perspective.Methods
Rodgers’ method of evolutionary concept analysis was used. The analysis was based on literature published in English in the databases Cumulative Index for Nursing and Allied Health Literature, Medline, and PsycINFO.FindingsAnalysis revealed that the continuity at life's end is a dynamic process that depends on the interaction among patients, families, and providers, and is strictly interwoven with the patient's time perception.Conclusion
This analysis showed the complexities surrounding the patient's experience of continuity at life's end.Implication for NursingNurses can benefit from a deeper understanding of the patient's experience, both theoretically and in practice.ScopoLo scopo dello studio è stato quello di chiarire il concetto di continuità assistenziale durante il fine vita seguendo la prospettiva dei pazienti.MetodiE’ stato utilizzato il metodo dell'analisi del concetto della Rodgers. L'analisi ha interessato la letteratura pubblicata in Inglese nei database CINAHL, Medline, and PsychINFO.RisultatiL'analisi ha mostrato come la continuità assistenziale sia un concetto dinamico che dipende dall'interazione dei pazienti, del familiari e degli operatori sanitari, ed è strettamente intrecciata con la percezione del tempo.ConclusioniaQuesto studio mette in evidenza la complessità dell'esperienza di continuità assistenziale durante il fine vita.Implicazione per gli InfermieriGli infermieri possono trarre beneficio da una profonda conoscenza dell'esperienza dei pazienti, sia da un punto di vista teorico che pratico.
This article contributes to the debate on dependence and independence through a study of how a group of 29 cognitively healthy Swedish home-help care recipients between the ages of 77 and 93 perceive their situation. Two overall themes with regards to how the constructs of dependence and independence are understood were found. One of them concerns how being in need of help can be justified (i.e. the why of receiving help) and the other how the very situation of being in need of help and care can be regarded (i.e. the how of receiving help). The study reveals a clear distinction between receiving help and care and feeling dependent, as well as between receiving help and care and being able to remain an active agent. On the basis of these findings we argue for the fruitfulness of distinguishing between ‘being’, ‘feeling’ and ‘acting’ as aspects of dependence and independence.
This article points out the criteria necessary in order for a qualitative scientific method to qualify itself as phenomenological in a descriptive Husserlian sense. One would have to employ (1) description (2) within the attitude of the phenomenological reduction, and (3) seek the most invariant meanings for a context. The results of this analysis are used to critique an article by Klein and Westcott (1994), that presents a typology of the development of the phenomenological psychological method.
MOTIVATIONAL THEORIES BASED ON THE PRINCIPLE OF HOMEOSTASIS OVERLOOK THE CHARACTERISTIC HUMAN TRAIT OF SELF-TRANSCENDENCE. IT IS A MISTAKE TO THINK OF MAN AS A CLOSED SYSTEM CONCERNED ABOVE ALL ELSE WITH THE PURSUIT OF PLEASURE OR NEED GRATIFICATION. HAPPINESS IS THE BY-PRODUCT OF ATTAINING GOALS RATHER THAN AN END IN ITSELF. PRIMARY HUMAN STRIVING IS DIRECTED TOWARD FINDING MEANING AND PURPOSE IN LIFE. FRANKL'S THEORY IS COMPATIBLE WITH THOSE OF BUHLER AND MASLOW. SELF-ACTUALIZATION AND PEAK EXPERIENCES, HOWEVER, MUST NOT BE THOUGHT OF AS ENDS IN THEMSELVES. ONLY TO THE EXTENT THAT MAN FULFILLS A MEANING IN THE WORLD OF REALITY DOES HE FULFILL HIMSELF. (36 REF.) (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Phenomenology in the modern sense of the term is dated from 1900 when E. Husserl published
Logical Investigations (1900/1970), although the phenomenological method itself was not explicitly practiced in that work. It was in
Ideas I (1913/1983) that Husserl made the method explicit. It is important to appreciate that to make phenomenological claims in the strongest sense one would have to use some version of the phenomenological method, along with certain other key procedures. That is why the authors first present the philosophcal method as articulated by Husserl, and immediately following, they articulate a scientific version of the phenomenological method. Next, the specific procedures of the phenomenological method are explained, with an example of an analysis. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Background:
Living with incurable lung cancer often drastically changes the patients' lives physically, socially, psychologically, and spiritually. The emotional experiences of patients with incurable lung cancer have been studied with a qualitative approach, but the findings are yet to be synthesized.
Objective:
The objective of this study was to synthesize interpreted knowledge on the illness-related emotional experiences of patients with incurable lung cancer.
Methods:
A qualitative metasynthesis was carried out to integrate the findings from 10 qualitative studies conducted between 1995 and 2011. The studies were critically appraised according to the method defined by Sandelowski and Barroso, and the findings were extracted, edited, and abstracted. The concept "loss" was imported as a method to synthesize the findings.
Results:
Eight themes of emotional experiences emerged: "guilt, blame, shame, and stigmatization," "hope and despair," "loneliness," "changing in self-image and self-worth," "uselessness and dependency," "uncertainty and worries," "anxiety and fear," and "loss." The loss experiences were categorized as unrecognized and clear losses.
Conclusion:
This study supports that patients with incurable lung cancer undergo illness-related emotions that can be identified as losses. Further studies are required to determine the best way for nurses to implement emotional care.
Implications for practice:
Nurses play an important role in the acknowledgement of unrecognized and clear losses while caring for patients with incurable lung cancer.
Self-transcendence is both a developmental point and an innate coping resource that allows one to overcome one's own ego concerns in a search for new perspectives and meaning. The purpose of this study was to examine differences in self-transcendence between hospice and oncology nurses and identify relationships between self-transcendence and the three aspects of burnout syndrome: emotional exhaustion, depersonalization, and personal accomplishment. Reed's theory of self-transcendence was used. The sample included 563 nurses, 244 hospice nurses, and 319 oncology nurses in the United States who completed mailed surveys. There were significant differences in self-transcendence between hospice and oncology nurses (P < .001). Significant correlations existed between self-transcendence and the three aspects of burnout for both groups of nurses (P < .01). Additional study is needed to further explore self-transcendence in nurses and identify effective ways to promote and nurture nurses' self-transcendence.
Facing the issue of dependence: some implications from the literature for the hospice and hospice nurses¶ Research and clinical practice suggest that dependence upon others causes distress to those with a life-threatening illness and that the hospice may serve to reinforce feelings of loss of autonomy. Hospice nurses can contribute to good care and act therapeutically to maximize an individual's potential for independent activity where this is possible and desirable. However, literature from other contexts demonstrates variability in the extent to which this is achieved. This paper outlines the problem of dependence in those with a life threatening illness. Therapeutic nursing is explored in relation to issues which may arise in a hospice context, potential relationships between therapeutic nursing and partnership are noted, particularly with regard to the possible meanings of dependence which for some individuals comes to be apprehensively associated with impending death.
The burden of cancer is growing, and the disease is becoming a major economic expenditure for all developed countries. In 2008, the worldwide cost of cancer due to premature death and disability (not including direct medical costs) was estimated to be US$895 billion. This is not simply due to an increase in absolute numbers, but also the rate of increase of expenditure on cancer. What are the drivers and solutions to the so-called cancer-cost curve in developed countries? How are we going to afford to deliver high quality and equitable care? Here, expert opinion from health-care professionals, policy makers, and cancer survivors has been gathered to address the barriers and solutions to delivering affordable cancer care. Although many of the drivers and themes are specific to a particular field-eg, the huge development costs for cancer medicines-there is strong concordance running through each contribution. Several drivers of cost, such as over-use, rapid expansion, and shortening life cycles of cancer technologies (such as medicines and imaging modalities), and the lack of suitable clinical research and integrated health economic studies, have converged with more defensive medical practice, a less informed regulatory system, a lack of evidence-based sociopolitical debate, and a declining degree of fairness for all patients with cancer. Urgent solutions range from re-engineering of the macroeconomic basis of cancer costs (eg, value-based approaches to bend the cost curve and allow cost-saving technologies), greater education of policy makers, and an informed and transparent regulatory system. A radical shift in cancer policy is also required. Political toleration of unfairness in access to affordable cancer treatment is unacceptable. The cancer profession and industry should take responsibility and not accept a substandard evidence base and an ethos of very small benefit at whatever cost; rather, we need delivery of fair prices and real value from new technologies.
The ability of human beings to find meaning by being directed toward something, or someone, other than themselves is termed "self-transcendence." Previous research indicated that the ability of nurses to self-transcend and thus derive positive meaning from patient-caring experiences increased work commitment and fostered work engagement. However, the relationship between self-transcendence and work engagement had not been investigated. The purpose of this study was to explore the levels and relationships of self-transcendence and work engagement in acute care staff registered nurses (ACSRNs). This was a descriptive correlational study using Reed's theory of self-transcendence. The Self-transcendence Scale, the Utrecht Work Engagement Scale, and a demographic questionnaire were completed by a convenience sample of 84 ACSRNs who attended an annual acute care nursing conference in northern Illinois. ACSRNs level of self-transcendence was high, similar to that of other nurses, but higher than that of nonnurses. ACSRNs level of work engagement was at the high end of the "average" range. There was a significant positive correlation between self-transcendence and work engagement. Nurses with higher levels of self-transcendence had more energy toward and were more dedicated and absorbed in their work.
To date there is much disagreement about the meaning of phenomenology possibly because the term has been used so widely. For instance, phenomenology has been conceptualised as a philosophy, a research method and an overarching perspective from which all qualitative research is sourced. The aim of this paper is it endeavours to make phenomenology more accessible and in turn a more attractive research methodology to use in management related research. The paper begins by exploring some of the well-known versions of phenomenological philosophy emanating from its founding father, Edmund Husserl. It then explores phenomenology as a research approach. Here two well-known applications of phenomenology are compared and contrasted to show some of the different assumptions underpinning these approaches. The paper makes the claim that phenomenological research methodology, while relatively unused in management research, has much to offer.
The overall need for elderly long-stay care cannot be calculated by use of dependency scales currently in use, or from measurements of any other variable currently available. Although the development of an epidemiological tool that will permit accurate needs assessment in this field should be made a research priority, it must be recognized that the final decision on the level of care offered rests with policy-makers, and that any such tool could only assist in the assignment of degrees of priority to those demanding long-stay care.
Nursing care dependency and similar terms are frequently used in nursing literature. However, their meanings are still to be adequately defined. This paper seeks to operationalize the concept of dependency for use in long-term nursing care practice. An analysis of the concept of dependency, specifically with regard to nursing care, will present a frame of reference from which a theoretical definition can be stated. Variable dimensions, observable indicators and means for measuring the indicators are presented. The paper concludes with implications for further research.
Struggling to be/show oneself valuable and worthy to get care. One aspect of the meaning of being dependent on care – a study of one patient, his wife and two of his professional nurses
Dependency on care has commonly been described negatively and as a problem that needs to be addressed. From a larger data material, interviews with an old, hospitalized man with a chronic disease, his wife and two of his professional nurses was selected to study. The aim was to illuminate the meaning of being dependent on care, when it appears `negative'. A phenomenological‐hermeneutic approach was used to interpret the material. The interpretation shows that dependency on care is reluctantly shown although it is expected to be expressed and/or respected as it is shown. This makes dependency on care camouflaged and the space to be dependent is limited. The meaning of being dependent on care is understood as a two‐dimensional struggle for existence. One dimension of the struggle is about to be/show oneself worthy to get care, as dependency on care holds a fear to be abandoned. The other dimension of the struggle is about to be/show oneself valuable as a human being, as identity is built upon being able to manage oneself and be strong. The interpretation if reflected on can open up possibilities to improve the quality of life for patients who are dependent on care.
This investigation sought to describe and compare dependency among dying persons. To accomplish this, healthcare records of all deceased persons who received care over a 6-month period in one Canadian hospital (n = 150) and one home care department (n = 59) were reviewed. Only 36% of the home care clients died at home; all others (n = 38) were hospitalized. Almost all subjects had dependency needs on admission to care, with dependency increasing until all were completely dependent near death. Hospitalized home care clients had the longest documented average duration of total (partial and complete) dependency (81.3 days). Types of dependency (partial and complete) and progression in dependency were similar among subject groups, with the exception of 26% of hospital inpatients, who suddenly developed complete dependency until death. The duration of complete dependency varied between and among subject groups, which explains why a significant difference in lengths of complete dependency between hospital inpatients (M = 8.3 days) and home care clients who died at home (M = 4.1 days) was not found. In light of a dearth of research-based knowledge, this information should facilitate an improved understanding of the dependency needs of dying persons. Ultimately, it should assist end-of-life care planning and policy making.
Dependency as disadvantage – patients' experiences
This is an empirical qualitative study of the dependent community patient. The investigation raises the question of what it is like to be a highly dependent patient and how they relate to the situation. A non-probability, volunteer sample was selected from home nursing patients in a large town in Norway. The data were collected through in-depth interviews with 15 patients in their home using a semistructured interview guide. A constant comparative approach was used for analysing data. The results show that dependency has disadvantages like constraints and burdens in daily life. The patient adjusts both in a reactive and proactive way. The constraints are apparent through reduced autonomy in daily life and limited possibilities for negotiation. The burden is demonstrated through uncertainty within the encounter situation, low esteem, and loss of privacy. Adjustment is made through planning, guidance of the carer, acceptance of the situation, positive self-image and by protection of family and carer, and placing blame on the bureaucracy. The patient reacts in a more passive, reactive way regarding circumstances connected to the health care system and in a more proactive way by trying to influence the situation in the interaction in the private sphere of the patient's home.
This article is part of an ongoing study aimed at illuminating the meaning of dependency on care. The aim of this particular study is to illuminate the meaning of the phenomenon 'dependency on care' as narrated by nurses. Interviews with 20 nurses were conducted, tape-recorded and transcribed verbatim. A phenomenological-hermeneutic approach was used to interpret the data. The meaning of dependency on care is revealed as laborious for both patients and nurses. The nurses' text discloses that for patients, dependency on care is a miserable loss of self-determination and self-worth. Nurses appear to be moved by dependents' difficult life and want to do whatever they can for the dependent. Dependency on care is a burdensome responsibility for nurses. For nurses dependency on care is revealed as evoking feelings of guilt and insufficiency and of being constantly concerned and worried. It is to struggle to be patient and understanding, having the arduous task of putting oneself into the dependent patients' shoes in order to cope with the demanding task of balancing between helping and not helping too much. The interpretation discloses, however, that nurses distinguish between easy and trying dependency on care. The understanding indicates that when they meet 'good' patients, nurses reappraise the situation, transform it into something new and meaningful, that is dependency on care is disclosed as 'easy to take'. When coming across'difficult' patients dependency on care is disclosed as trying. It seems that within the unique nurse-patient relationship patients may participate in such a way as to facilitate or inhibit nurses in finding meaning in the immediate caregiving situation. Nurses' evaluations of what constitutes a 'good' or a 'difficult' patient, respectively, seem to play an important role in distinguishing between dependency on care that is easy and that which is trying. The result is viewed through an existential paradigm and there is also reflection about what nurses perceive as valuable qualities in patients which might influence the quality of care.
This article is part of an ongoing study that aims to illuminate the meaning of dependency on care. The aim of this particular study is to disclose the meaning of dependency on care as narrated by patients. We conducted interviews with patients (six men and four women) who had been in medical or surgical wards for at least 14 days. Seven of the patients were also interviewed one week after discharge. The participants ranged in age from 41 to 84 years old. The interviews were tape-recorded and transcribed verbatim. A phenomenological-hermeneutic approach was used to interpret the resulting text. The results show that to be dependent on care is to face the inevitability of not being able to manage by oneself--it is being attached to the nurses and bound to the care they offer. Being dependent on care involves a struggle to get care without treading on the nurses' toes. The nurses are one's lifelines and getting care is essential, no matter what. It is better to receive any form of care, good or bad, than to receive nothing. Being dependent on care is to be exposed and subjected to a nurse's ability and benevolence. One comprehensive understanding of the meaning of dependency on care is simply that "one does not saw off the branch one is sitting on." Furthermore, dependency on care involves a struggle to move forward in a life that hurts. Patients lose much of their freedom of choice in daily life and grieve their loss of ability and value. Patients may be able, however, to see things they would have never noticed earlier in life. Dependency on care is understood as one kind of "limit situation." Patients who are dependent on care may reevaluate their potential in life and gain another perspective on life.
This paper is a report of a concept analysis to identify a meaning of care dependency that can be shared by both care givers and care recipients.
Care dependency can be perceived from the care recipient's and the care giver's perspective. To allow for comparisons, both sides should share the same understanding of the concept. The current research about care dependency has focused on external assessment by nurses and suffers from a tendency to use the concept with different meanings. As a consequence, research on dependency may capture different phenomena.
Walker and Avant's method for concept analysis served as the guideline for this study. The Medline, CINAHL and Cochrane databases were searched for the period 1996-2006 using the terms dependence, dependency, care dependence and care dependency.
Care dependency can be defined as a subjective, secondary need for support in the domain of care to compensate a self-care deficit. Functional limitations are a necessary antecedent and unmet needs are a possible consequence of care dependency. The conceptual difference between care dependency, functional limitations and unmet needs may be meaningless for study participants. They may better understand these differences if they are asked about all three phenomena in the same investigation.
Care givers and care recipients can agree on the suggested attributes of care dependency but may judge them in different ways. Self-assessed care dependency has the potential to challenge preconceptions of care givers about care dependency.
The purpose of this study was to describe people's experiences of being dependent on others for care in their final stage of life, as well as what they felt made their experience of being dependent easier or more difficult. The phenomenological-hermeneutical method was chosen, where data collection consisted of open-ended interviews with nine people undergoing palliative care at a hospice unit or at home. The meaning of being care dependent is described via the following themes: changed relationship with oneself and with others, striving to adapt oneself to the situation, obstacles, and opportunities along the way while dependent. The result is described as an effort, a journey from independence to moments where it was possible to rest and recuperate while struggling with care dependency. Nursing staff require knowledge and understanding of experiences with care dependency to make life easier for people during increasing dependency in the final stage of life.
The shared dependency
- E Colombetti
Colombetti E. The shared dependency. Medic. 2013;21(2):24-29.
Adult patients' experiences of nursing care dependence
- M Piredda
- M Matarese
- C Mastroianni
- D' Angelo
- D Hammer
- M J De Marinis
Piredda M, Matarese M, Mastroianni C, D'Angelo D, Hammer MJ, de
Marinis MG. Adult patients' experiences of nursing care dependence. J Nurs
Scholarsh. 2015;47(5):397-406.
World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects
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Helsinki: ethical principles for medical research involving human subjects.
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