Article

Nursing care dependence in the experiences of advanced cancer inpatients

Authors:
  • Campus Bio-Medico University of Rome
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Abstract

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.

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... Patients who receive chemotherapy often develop care dependency in relation to cancer, chemotherapy, and additional diseases. 15 In the literature, patients who have care dependency are often reported to have problems in providing self-care. 16 Accordingly, as patients who undergo chemotherapy become care-dependent, their self-care can be affected. ...
... Consistent with these study results, Bilgin et al. 18 found in their study with patients hospitalized in the oncology clinic that the patients' care dependency was moderate. In the study by Piredda et al. 15 investigating the perception of care dependency in patients with advanced-stage cancers, care dependency was mostly negatively perceived by patients, but this was seen as a natural phenomenon. ...
... 16 Because of prolonged cancer treatment processes in cancer patients and the presence of comorbidities, development of care dependency is highly likely. 15 Patients in this study had mediumlevel dependencies, which may have led to different results. This may be due to the moderate dependency of patients. ...
... 35 In qualitative studies, some patients believed that the positive attitudes (such as facing challenges bravely and doing their best whether they were confident or not, self-encouragement, having a positive outlook on the future, and enjoying life) could effectively cope with the SPB. 17,30,32,48,49 But some patients may also see compromise, denial, and viewing death as a release as a response. 17,30,32,50 There are also differences in the cancer patients' attitudes toward the other peoples. ...
... 52 In another study, patients believed that mutual help could cure themselves better. 49 In addition, unlike the patients with cancer at other stages, the patients with advanced cancer were usually difficult to make substantive responses and changes based on their own conditions. They coped by expressing their attitudes and choices about the treatment methods and the terminal sites. ...
... 48 To combat the negative effects of cancer, the patients also actively sought help or requested information from others. 30,48,49 These active coping strategies not only improved patients' physical condition and relieve the burden of their caregivers but also improved patients' SPB. Some patients used different coping strategies. ...
Article
Objective: Self-perceived burden (SPB) is a painful experience for patients with cancer and their caregivers. However, the intervention and coping strategies for SPB have not been systematically summarized. This work reviews the effects of interventions and coping strategies on SPB. Methods: A systematic search, including trawling through six electronic databases, was performed to identify the articles published from January 2003 to February 2023, both in English and in Chinese. The key terms related to burden on others, intervention, and coping of patients with cancer were adopted. Manual search was also applied. Results: Thirty articles were identified. Interventions were presented in three dimensions: physical, psychological, and financial/family. Coping strategies were presented in terms of coping attitudes and behaviors. Interventions such as functional exercise and psychological adjustment can improve SPB in the three dimensions mentioned above and thus alleviate SPB. Patients with different coping styles have different implications for prognosis. In addition, the impact of caregivers on patients and the coping they provided were worthy of attention. Conclusions: This article reviewed interventions for SPB in patients with cancer and the coping strategies from patients and caregivers. The interventions targeting on SPB can alleviate SPB by improving patients' physical condition, psychological status, and financial/family situation. However, the coping attitudes and behaviors of both patients and caregivers were depending on the individual cognitions and perceptions; different coping strategies produced different outcomes. To achieve improvements in SPB, interventions should incorporate the coping strategies. Appropriate patient-caregiver dyad interventions should be constructed based on the commonalities in coping with SPB.
... Patients who have chemotherapy often develop care dependency in relation to cancer, chemotherapy and additional diseases (15). In the literature, patients who have care dependency are often reported to have problems in providing self-care (16). ...
... Consistent with this study results, Bilgin et al. found in their study with patients hospitalized in the oncology clinic that the patients' care dependency was moderate (18). In the study by Piredda et al. investigating the perception of care dependency in patients with advanced-stage cancers, care dependency was mostly negatively perceived by patients, but this was seen as a natural phenomenon (15). ...
... However in the literature, patients who have care dependency are often reported to have problems in providing self-care (16). Due to prolonged cancer treatment processes in cancer patients and presence of comorbidities, development of care dependency is highly likely (15). Patients in this study had medium level dependencies which might have led to different results. ...
Article
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ABSTRACT BACKGROUND/AIMS: The symptoms experienced by patients receiving chemotherapy reduce their ability to perform daily life activities, adversely affect the quality of life and makes them dependent on care to meet their care needs. This study was conducted to examine the relationship between care dependency and self-care behaviors in patients undergoing chemotherapy. MATERIAL and METHODS: This descriptive and correlational study was conducted with 100 patients in Turkey between November 2018 and February 2019. Ethics committee approval, institution permit and patient consent were obtained in order to conduct the study. Data were collected by face to face interviews by using Patient Information Form, Care Dependency Scale and Self-care Behavior Scale According to Self-Care Inability Theory in Patients Receiving Chemotherapy. In the analysis of the data, t-Test, Mann Whitney U Test, Kruskal Wallis Test, Pearson Correlation Test and regression analysis were used in independent groups. RESULTS: It was found that 74% of the patients who participated in the study were male, 48% were between 39 and 58 years old, 38% were diagnosed with lung cancer, and 63% received 2- 4 cycles of chemotherapy. Mean scores of “Care Dependency Scale” (68.98±15.89) and “Selfcare Behavior Scale According to Self-Care Inability Theory in Patients Receiving Chemotherapy” (69.54±13.20) were at a moderate level. It was determined that the patients' care dependency scores accounted for the change of the total score of self-care behaviors at a rate of 21%. CONCLUSION: As a result, the study found that self-care behavior increased as the care dependency of chemotherapy patients decreased, and self-care behaviors were affected by care dependency at a low rate. Keywords: Care dependency, chemotherapy, self-care
... Care dependency is measured with the Care Dependency Scale (CDS). The CDS is a multidimensional assessment tool which is applied to measure physical and psychosocial needs and allows the use of a holistic care approach (Piredda et al., 2020;Piredda, Bartiromo, et al., 2016;Piredda, Biagioli, et al., 2016). ...
... Overall, the experience of dependency influences people very strongly (Piredda, Bartiromo, et al., 2016;Piredda, Biagioli, et al., 2016). Care dependency can affect their interpretation of the meaning of life, their awareness as a person who receives care, and some patients even begin to view their lives differently than before. ...
... Care dependency can affect their interpretation of the meaning of life, their awareness as a person who receives care, and some patients even begin to view their lives differently than before. In Piredda, Bartiromo, et al. (2016) and Piredda, Biagioli, et al. (2016), where the experience of care dependency of advanced cancer patients is described, and changes in their views on time and a change of the perception of really important things in life are mentioned. ...
Article
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Aims and objectives The holistic care dependency concept can be applied to gain comprehensive insights into individuals’ care needs in the end-of-life (EoL) phase. This study was carried out to measure and characterise the “care dependency” phenomenon in this phase and to obtain deeper knowledge about this phenomenon. Background The end of a human life is often characterised by a physical decline, often implying that a high amount of care is needed. Non-malignant diseases can develop unpredictably; therefore, it is difficult to detect the onset of the EoL phase. Design Data were collected in a cross-sectional multicentre study, using the Austrian Nursing Quality Measurement 2.0. Methods Descriptive and multivariate statistical methods were used. Care dependency was measured with the Care Dependency Scale (CDS). The study follows the STROBE guideline. Results Ten per cent (n = 389) of the sample (N = 3589) were allocated to “a pathway for management of patients at the end of life.” The patients and residents in the EoL phase are significantly older and more often diagnosed with dementia, and circulatory system and musculoskeletal system diseases. Of these patients, 60% were care dependent completely or to a great extent. Dementia and age represent main influencing factors that affect the degree of care dependency at the end of life. Conclusion Our results show that the “typical” EoL patient or resident is female, old and affected by dementia and/or circulatory system diseases. Dementia and age were identified as main factors that contribute to very high care dependency. Relevance to clinical practice The measurement of care dependency may support the identification of special care needs in the EoL phase. Gaining deeper knowledge about the care dependency phenomenon can also help healthcare staff better understand the needs of patients with non-malignant conditions in their last phase of life.
... This also has an impact on patients who experience nursing care dependence, which is associated with feeling useless, worthless (Eriksson & Andershed, 2008), and distressed by being a burden to others (Chindaprasirt et al., 2019). However, some patients with advanced cancer who became care dependent found that their condition could be also experienced positively (Piredda et al., 2016). ...
... The definition of care dependence used in this study was that of the condition of patients whose self-care abilities have decreased and whose care requirements make them dependent on nursing care (Dijkstra et al., 1999). The theoretical framework used to develop the indicators came from a meta-synthesis of patients' perceptions of care dependence (Piredda et al., 2015) and from qualitative studies conducted with patients with advanced cancer admitted to hospitals in three cities located in central and northern Italy (Candela et al., 2020;Piredda et al., 2016). From the above findings, patients' positive or negative perspectives of care dependence emerged. ...
... From the above findings, patients' positive or negative perspectives of care dependence emerged. Patients who experience care dependence as a positive or natural condition that could help them to discover new meanings of life, consider themselves privileged for being gifted with human richness through the people they meet (Piredda et al., 2016). For instance, patients reported positive percep- ...
Article
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.
... A meta-synthesis showed that the relationship between patients and nurses caring for them played a key role in the overall patient experience of dependence [13]. The perceptions of patients with cancer were investigated only by four qualitative studies conducted in palliative care or in acute care hospitals [14][15][16][17]. Dependence was a great concern for patients with cancer in different contexts of care because they felt they were a burden to others [14,15]; moreover, it could change patients' relationships with others and with their own body, which was perceived as shameful and strange [16]. ...
... Dependence was a great concern for patients with cancer in different contexts of care because they felt they were a burden to others [14,15]; moreover, it could change patients' relationships with others and with their own body, which was perceived as shameful and strange [16]. Despite such negative feelings, dependent patients with cancer might have moments of respite in which dependence was accepted [15], they learnt to cope with it, and discovered new meanings in life [17]. ...
... Patients build their own mental image of the nurses, choosing one of them as their referencepoint [29]. They look for safety [30], comfort and proximity [17]. Technical skills are secondary: patients have to feel that the nurse is giving them genuine care rather than performing competently [29]. ...
Article
Full-text available
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.
... 22 Moreover, as it is a relational condition, 23,24 it is important to investigate nurses' views along with those of patients. 25 The nurse-patient relationship was shown to have a strong impact on the patient's perception of nursing care dependence in a recent metasynthesis of qualitative studies investigating the patient's experiences. 22 When the care relationships are positive, they can contribute to the development of the patients involved, who show trust in people, surrender themselves into others' hands, and feel cared for and loved. ...
... 22 The experience of dependence leads patients to modify their life and to find new life meanings. They have to find strategies to adapt themselves to their new condition 25 and to go beyond their limits. Understanding nurses' perceptions and experiences of their care for dependent patients and of the patients' dependence can contribute to awareness of the impact care dependence has on nurses. ...
... 26 Opening themselves to others, learning to ask for help, and surrendering themselves into other people's hands is important for caredependent patients with advanced cancer. 25 The theme care dependence is a relation of mutual growth reveals that good relationships, full of respect, trust, and gratitude, can make patients and nurses evolve as people. Patients are grateful for the help received and feel the need to repay it, and nurses are grateful for the "life lessons" received from patients who help them grow as individuals. ...
Article
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.
... These individuals especially think that care has a healing effect on them. 37 It can be said that patients expect their companions to take care of them in this process. ...
Article
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Introduction and aim. The incidence of cancer is increasing on a daily basis. One of the methods used for treatment is radiotherapy. Owing to interventions during the radiotherapy process, the patient may experience care dependency. In this study, the aim was to investigate care dependence and related factors in radiation oncology patients. Material and methods. This was a descriptive and cross-sectional study. Data were collected between September 2020 and September 2021. In the collection of data, a sociodemographic information form and a Care Dependency Scale were used. The sample consisted of 52 people. Results. Number of participants was 52, mean age was 60.25±11.715, mean care dependency score (initial) 66.19±18.966, mean care addiction score (final) 66.27±22.795. Conclusion. The care dependency of patients hospitalized in the radiation oncology clinic is moderate. The care dependency of these patients decreased partially during their stay in the clinic. The patient’s inability to walk, speak and the presence of a companion affected the patient’s condition. By evaluating the care dependency levels of the patients, the awareness of the nurses about their patients can be increased. In addition, it may be appropriate to consider the care dependency levels of the patients for the nurse workforce planning to work in the oncology clinic.
... Dependence appears as an experience with strong relational connotations, which enable patients to see differently their life, themselves, the world and others. 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 (Piredda et al., 2016). Cancer cachexia is a complex syndrome. ...
Chapter
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EPIDEMIOLOGY, DIAGNOSIS AND TREATMENT OF LIVER ECHINOCOCUS GRANULOSUS
... Since care dependence is a natural human experience, nurses can help patients become subjects of care, coping with both physical and psychological dependence (Piredda et al, 2016). Ultimately, the nurse-patient relationship can positively moderate how patients experience life with dependence (Piredda et al, 2015). ...
... Furthermore, a study by Piredda et al. (2016) found that patients experience multiple transitions related to care dependency during hospitalisation and the perception of these differs among patients. Some had positive experiences with dependency of care as it made them feel at home and relieved to receive the needed care. ...
Article
Purpose: The present study explores patients’ experiences of transitions during courses of incurable cancer. So far, qualitative studies have primarily contributed with insight on what it is like living with incurable cancer related to predefined areas in patients’ lives. Studies rarely focus on transition experiences and none have explored patients’ transition experiences throughout the course of illness. Focusing on transitions in palliative care is important as it facilitates possibilities for healthcare professionals to support patients when needed. Method: Ten patients living with incurable cancer were included from a specialised palliative care team and participated in individual semi-structured interviews conducted in participants’ private homes. The study takes a phenomenological-hermeneutic approach and data analysis and interpretation were inspired by the French philosopher Paul Ricoeur. Results: Two main themes were identified: “Everyday life changes” and “Approaching end of life”. In total, seven sub-themes were identified. Three related to the first main theme: “Normal life changes” “People changing behaviour” “Changes hurting significant others” and four related to the second main theme: “Approaching death” “Preparing for leaving” “Holding on to life” and “Connecting with places and belongings”. Conclusion: Patients experienced multiple transitions within their everyday lives and in the process of approaching end of life. These transitions involved experiences of both suffering and well-being.
Article
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.
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The present study aimed to determine the predictors of quality of life (QOL) of patients with advanced cancer. A cross-sectional study involving 494 patients with advanced cancer was conducted using the Memorial Symptom Assessment Scale-Short Form, the Karnofsky Performance Status Scale, the World Health Organization Disability Assessment Schedule (Korean version), and the European Organization for Research and Treatment of Cancer Quality of Life Core 30. Regression analyses showed that physical and psychological symptoms significantly predicted the patients' QOL and explained 28.8% of the variance in QOL. Moreover, lack of energy was the patients' most prevalent symptom. The results of the present study will serve as fundamental data upon which the development of an intervention will be based so as to enhance the patients' QOL. Accordingly, an effective management of symptoms and performance maintenance should be considered in the future as key factors in providing support and establishing palliative care systems for patients with advanced cancer.
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Background: Insight in the natural course of care dependency of vulnerable older persons in long-term care facilities (LTCF) is essential to organize and optimize individual tailored care. We examined changes in care dependency in LTCF residents over two 6-month periods, explored the possible predictive factors of change and the effect of care dependency on mortality. Methods: A prospective follow-up study in 21 Dutch long-term care facilities. 890 LTCF residents, median age 84 (Interquartile range 79-88) years participated. At baseline, 6 and 12 months, care dependency was assessed by the nursing staff with the Care Dependency Scale (CDS), range 15-75 points. Since the median CDS score differed between men and women (47.5 vs. 43.0, P = 0.013), CDS groups (low, middle and high) were based on gender-specific 33% of CDS scores at baseline and 6 months. Results: At baseline, the CDS groups differed in median length of stay on the ward, urine incontinence and dementia (all P < 0.001); participants in the low CDS group stayed longer, had more frequent urine incontinence and more dementia. They had also the highest mortality rate (log rank 32.2; df = 2; P for trend <0.001). Per point lower in CDS score, the mortality risk increased with 2% (95% CI 1%-3%). Adjustment for age, gender, cranberry use, LTCF, length of stay, comorbidity and dementia showed similar results. A one point decrease in CDS score between 0 and 6 months was related to an increased mortality risk of 4% (95% CI 3%-6%).At the 6-month follow-up, 10% improved to a higher CDS group, 65% were in the same, and 25% had deteriorated to a lower CDS group; a similar pattern emerged at 12-month follow-up. Gender, age, urine incontinence, dementia, cancer and baseline care dependency status, predicted an increase in care dependency over time. Conclusion: The majority of residents were stable in their care dependency status over two subsequent 6-month periods. Highly care dependent residents showed an increased mortality risk. Awareness of the natural course of care dependency is essential to residents and their formal and informal caregivers when considering therapeutic and end-of-life care options.
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According to the most important theories of justice, personal dignity is closely related to independence, and the care that people with disabilities receive is seen as a way for them to achieve the greatest possible autonomy. However, human beings are naturally subject to periods of dependency, and people without disabilities are only 'temporarily abled'. Instead of seeing assistance as a limitation, we consider it to be a resource at the basis of a vision of society that is able to account for inevitable dependency relationships between 'unequals' ensuring a fulfilling life both for the carer and the cared for.
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Historically, the ambulance care has focused on acute transports and medical treatment, although ambulance care has also been reported as complex, encompassing more than just medical treatment and transports. Previous studies, on ambulance clinicians, have pointed out the importance of interpersonal caring activities complementary to the medical treatment. Those activities can be understood as taking part in the relationship between patients and ambulance clinicians, earlier described as essential and a core component of care. The aim of this study was to elucidate the meaning of the relationship with the ambulance clinicians as experienced by patients. Twenty ambulance patients were interviewed in the study. The interviews were transcribed verbatim and analysed with a phenomenological hermeneutical method to grasp meanings in the patients' experiences. The regional ethical committee approved the study. In the result emerged one main theme: To surrender in dependence of another. The main theme includes four themes: Being in the hands of another, Being in a caring temporary presence, Being important while involved and Being powerless while insignificant, and the themes comprise eleven subthemes. The main theme meant to have no other option than to surrender and to put their life into the hand of another. This surrender also meant to adapt to the clinicians' views even if not shared. This is experienced as excessive care. Summarised, the patients' experiences were both positive and negative and the findings provide a complex understanding of the relationship between the patient and the ambulance clinicians. Overall, the relationship embraces the whole person without reducing the patient to be a recipient of an objectified ambulance care.
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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.
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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.
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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.
Article
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.
Article
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.
Article
A common misconception about sampling in qualitative research is that numbers are unimportant in ensuring the adequacy of a sampling strategy. Yet, simple sizes may be too small to support claims of having achieved either informational redundancy or theoretical saturation, or too large to permit the deep, case-oriented analysis that is the raison-d'être of qualitative inquiry. Determining adequate sample size in qualitative research is ultimately a matter of judgment and experience in evaluating the quality of the information collected against the uses to which it will be put, the particular research method and purposeful sampling strategy employed, and the research product intended.
Article
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.
Article
This article is part of an ongoing study which aims at disclosing the meaning of being dependent on care. From a larger data set derived from 10 patients, interviews with one severely ill patient, her daughter and two of her professional nurses were selected to illuminate a "positive" meaning of being dependent on care. The interviews were tape-recorded and transcribed verbatim and followed by interpretation of transcripts using a phenomenological-hermeneutic approach inspired by Paul Ricoeur's philosophy. The interpretation discloses the meaning of being dependent on care as balancing between being free and negotiating when receiving care. Whether or not dependency on care is negotiated about seems to be about how the power that lies in the existing differences in ability is used. When ability, that is, power, is used to compensate inability, the patient appears free to be dependent on care. Dependency on care is accepted for what it is, when it is. When dependency on care is negotiated about, the differences in ability, that is, power, risk setting limits for what dependency on care is to be. There is a risk that dependency on care will be limited within the frame of what is regarded as polite, appealing and pleasing.
Article
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.
Article
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.
Article
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.
Article
The purpose of the present study was to investigate the meaning of advanced breast cancer patients' quality of life (QoL). A semi‐structured interview was used, and the phenomenological research method chosen to analyse the data. The findings show that limitations in physical functioning translate into dependency on others, leading to decreased autonomy. Patients tended to ensure their autonomy by participating in easier activities or changing their internal standards. Changes in appearance and decreased condition affected patients' ability to carry out roles and responsibilities, which led to changes in lifestyle and also affected patients' social functioning, often resulting in isolation. The meaning of being able to sustain reciprocal relationships was emphasized. Patients maintained control of to what extent their illness was recognized in social relationships, which was crucial to their feelings of autonomy. Close families were a main source of social support, but also a major source of concern. Meaning of emotional functioning was often expressed in terms of the ability to enjoy life day‐by‐day and of commitment to treatment. Patients' cognitive functioning was largely intact while their difficulties in cognitive functioning were more characteristic of anxiety. Global QoL was often expressed in terms of a normal life. In addition there were 3 meta themes which emerged from the data: the patients' ability to control the illness experience, personal growth and hope. Copyright © 2004 John Wiley & Sons, Ltd.
Article
The paper gives a theoretical account of experiences of assisted personal body care (APBC) in hospitalized patients with severe chronic obstructive pulmonary disease (COPD). Body care has been identified as a central but underestimated area of nursing. Hospitalized patients with severe COPD suffer from breathlessness on exertion and are dependent on help with personal body care. Studies have described patient strategies for managing breathlessness and preferences regarding nursing care during hospitalization. Yet the problems that patients can experience because of their inability to manage personal body care by themselves have not previously been explored. This study explored patients' experiences of being assisted with personal body care. A grounded theory methodology was used with a convenience sample of 12 patients. Data were gathered from participant observation of sessions of APBC, in-depth interviews after the observed sessions and measurement of breathlessness perceived by patients before and after the sessions. The patients perceived body care as a significant daily activity that needed to be carried out in order to preserve their integrity. Dependency and breathlessness, however, impeded the performance of body care activities and patients were struggling for self-preservation. They managed APBC by using a threefold strategy of not letting go, coping with dependency, and minimizing the risk of escalating breathlessness. Two dilemmas were identified as being inherent to the strategy. Increased knowledge of the complexities involved in providing assistance might improve nurses' ability to facilitate patients in managing APBC. Dependency is a central issue to address in order to support patients' efforts to preserve integrity and resolve dilemmas inherent to the strategy they use.
Article
The purpose of this study was to uncover the lived experience of Lebanese oncology patients receiving palliative care. The study design was based on the Utrecht School of Phenomenology based on the Dutch school of phenomenology. This study followed purposeful sampling in which ten participants, six women, and four men, with a mean age of 54.4 years were selected. In-depth semi-structured interviews along with observation field notes were used as the source for data collection. Data were analyzed using the hermeneutic phenomenological approach based on the Utrecht School of Phenomenology. The participants highlighted their distress from being dependent; their dislike for pity; their worry for the family and the worry about the family's worry; their reliance on God and divinity; their dislike of the hospital stay; their need to be productive; their fear of pain; and their need to communicate. Specific nursing actions related to the themes would include exploring patients' ideas, beliefs, and experiences regarding pain, and improved communication among patient, family, and the health care providers.
Article
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.
Article
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.
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