Recognizing and acknowledging end-of-life for patients with cancer - a balancing act. A qualitative study of doctors' and nurses' experiences.

PURPOSE: Doctors and nurses are central in the challenging task of end-of-life (EOL) care, and this study aims to explore and describe doctors' and nurses' experiences of recognition and acknowledgment of the end of life for patients with cancer. METHODS: A qualitative, explorative research design with individual interviews was carried out based on a semi-open interview guide. A total of 6 doctors and 6 nurses working in medical or surgical departments at a Norwegian University hospital were interviewed. The interviews were analyzed using qualitative content analysis. RESULTS: The study's findings highlight that recognizing and acknowledging patients with cancer as being at end-of-life is a challenging process. Three subthemes emerged from the analysis; the significance of being experienced, the significance of organizational structures, and the significance of having a common understanding. A main theme was analyzed further and abstracted from the subthemes; Being safe to manage the balancing act of recognizing and acknowledging the end of life. CONCLUSIONS: Much is at stake in the EOL setting, and healthcare professionals (HCP) must balance several aspects regarding EOL decisions. Striking the right balance in these situations is challenging. HCPs need a safety net through collaboration with, and support from, colleagues, supporting organizational structures and experience. Strengthening the safety net will have a clear impact on improving clinical practice to reduce futile treatment and provide high-quality EOL care for all dying patients in hospitals.

Organizational structures influencing timely recognition and acknowledgment of end-of-life in hospitals - A qualitative study of nurses' and doctors' experiences.

PURPOSE: Healthcare personnel's timely recognition and acknowledgment of end-of-life (EOL) is fundamental for reducing futile treatment, enabling informed decisions regarding the last days or weeks of life, and focusing on high-quality palliative care. The aim of this study is to explore and describe nurses' and doctors' experiences of how organizational structures in hospitals influence timely recognition and acknowledgment of EOL. METHODS: A qualitative explorative design was applied, with data collected through 12 individual in-depth interviews using a semi-structured interview guide. A total of 6 nurses and 6 doctors were strategically recruited from medical and surgical wards in a Norwegian hospital. Qualitative content analysis was used. RESULTS: The analysis revealed the theme The importance of hospital organizational structures in timely recognition and acknowledgment of EOL and a subtheme comprising three areas of organizational structures influencing timely recognition and acknowledgment of EOL; Challenges to and demands of continuity, collaboration, and time. CONCLUSIONS: The study's results show challenges in identifying when cancer patients approach the last weeks and days of life within hospital wards. For nurses and doctors to be able to recognize and acknowledge EOL, continuity of care, collaboration, and time is needed. A fragmented healthcare system, with a predominant focus on treatment and cure, may prevent cancer patients from receiving timely palliative, care causing unnecessary suffering.

Health professionals' reflections on existential concerns among people with obesity.

PURPOSE: This study aimed to describe health professionals' reflections on existential concerns among people with obesity when attempting to support them in their lifestyle change processes. For many of those affected by obesity, the condition becomes lifelong and causes existential concerns. The health professionals' reflections on existential concerns among people with obesity may influence central aspects of their practice and their patients' well-being. METHODS: Eighteen health professionals with relevant health education working in three different treatment programmes for people with obesity were recruited for three focus group interviews. The interviews were analysed and interpreted using a model for interpretation of meaning at three levels with a phenomenological-hermeneutical approach. FINDINGS: The analysis identified three themes. The health professionals reflected on existential concerns among people with obesity in terms of patients' repressed emotional difficulties and lack of self-respect. In addition, they reflected on their own experiences of powerlessness when presented with people with obesity's existential concerns. CONCLUSION: The present study provides valuable insights into reflections on existential concerns among people with obesity, based on health professionals' descriptions. We believe that these insights add to the existing literature and have consequences for how people with obesity are met and cared for.

Cancer survivorship: existential suffering.

PURPOSE: This study aimed to explore and describe existential experiences after cancer treatment. METHOD: An exploratory phenomenological hermeneutical design was used following in-depth interviews with 21 people. RESULTS: The study revealed experiences of multifaceted suffering in the form of limitations in everyday life, inner struggles, and bearing the burden alone. CONCLUSIONS: Existential suffering after cancer treatment was revealed as like being in a process of transition, in an intermediate state, as moving between suffering and enduring, and alternating between alienworld and homeworld. A new and broader professional perspective is needed to establish rehabilitation services based on multifaceted experiences of suffering. This means a shift in focus from biomedical symptoms towards understanding of existential meaning for the person.

Homeworld/Alienworld: a qualitative study about existential experiences after cancer treatment.

BACKGROUND: As a group, cancer survivors experience significant vulnerability and existential challenges. The biomedical approach dominating health care is insufficient to meet such existential challenges in an individualistic, holistic way. OBJECTIVE: This study aimed to explore the existential experiences of those treated for different cancers. METHODS: An exploratory phenomenological-hermeneutical design was used to obtain an understanding of existential experiences after cancer treatment. Data were collected through in-depth interviews with 21 individuals who represented a purposive sample and were recruited from a cancer organisation. RESULTS: Three overriding themes emerged from the phenomenological-hermeneutical analysis are as follows: Experiencing an unfamiliar tiredness; Experiencing not being fully oneself; and Experiencing a feeling of being alone. CONCLUSIONS: Existential suffering after cancer treatment involves living on the edge of the old homeworld and the experience of a new alienworld. Individuals undergoing such suffering need a transformational process, from the alienworld to the homeworld, which must be supported by the healthcare system. IMPLICATIONS FOR PRACTICE: To facilitate the transformational process, healthcare professionals should communicate with patients throughout their cancer journey about how their existential experiences have been integrated into their lifeworld, allowing them to tell their own story from the perspective of lifeworld brokenness.

Life after cancer treatment - existential experiences of longing.

Purpose: The study aimed to gain insight into existential longing as experienced by people treated for cancer. Method: An exploratory phenomenological-hermeneutical design was used, and data were collected through in-depth interviews with 21 people recruited from a cancer organization. Results: Three themes emerged: longing to be oneself, longing for relief from suffering, and longing for rootedness. The theoretical understanding of well-being developed by Todres and Galvin was used to illuminate how the life-fulfilling power of longing is inherent in dwelling-mobility. Conclusions: During the theoretical interpretation and discussion of these findings, a new analytic step revealed a state of uncertainty that can influence longing. The findings of this study may help fill the gap in the current health-care approach to cancer survivors by highlighting the importance of a new professional perspective of listening to patients describe their existential burden. Such an approach may create greater clarity and thereby allow longing to flow more freely towards future possibilities and well-being.

Living With Obesity: Expressions of Longing.

Those who are obese experience complex moral distress. The norm in Western societies is to be slim, and people living with obesity experience challenges under the gaze of society. They feel great vulnerability and the available treatments seldom meet individual needs. New concepts of embodiment need to be developed to include phenomenological investigations. There is limited knowledge about longing among those suffering from obesity. A deeper understanding of longing from an individual perspective is required to improve treatment. The aim of this study was to gain an in-depth understanding of the experiences of longing by those suffering from obesity. The research was approved by the Norwegian Regional Committees for Medical and Health Research Ethics. An explorative phenomenological-hermeneutical design was used. Qualitative interviews were conducted with 18 participants, all with body mass indexes in the range of 30 to 45, which were then analyzed using a phenomenological-hermeneutical approach. Three main dimensions of longing were revealed: longing for normality, longing for what was lost, and longing for simplicity in life. The health service needs to understand better the longings of obese individuals to help them live their lives in greater freedom, based on their own longings and self-care. Focusing on longing may reveal a person's true desires, and the longing may be a form of resistance to the disciplination of society.

Putting life on hold: lived experiences of people with obesity.

Obesity presents challenges in everyday life, one of which involves the existential aspects of living life as a person with obesity. There is a need for understanding the existential experiences, but there is limited in-depth research about these experiences of people with obesity. The aim of this study was to gain deeper insight into the existential experiences of people dealing with obesity. We performed a qualitative study that included in-depth interviews with seven men and 14 women with obesity (body mass index ≥ 35 kg/m2 ) aged 18-59 years. The study took a phenomenological-hermeneutic approach in which the participants' own experiences formed the basis for understanding their lifeworld. The lived experiences of people dealing with obesity were characterised by several existential challenges. One overarching theme-Putting life on hold when struggling with obesity-was developed based on three themes: The body as an impediment to living the desired life, to being oneself and to moving on in life. These findings illustrate the complex existential experience of life, body and existence faced by people dealing with obesity. Based on these findings, we discuss whether people with obesity who experience 'putting life on hold' are attuned to live their life to the fullest in some areas. Their embodied experiences seem to challenge them to experience the joy of life, to appear as a whole self and to live life in the moment. Reflecting on obesity in the context of life and life phenomena seems to provide deeper insights into the existence of people living with obesity and may help to advance a more comprehensive approach in obesity health care.

Aspects of well-being when struggling with obesity.

Purpose: We aimed to gain deeper insight into how people struggling with obesity handle their life situation by addressing how well-being might unfold. For many people, obesity becomes a lifelong condition characterized by repeated weight fluctuations while their weight increases gradually. From an existential perspective, constantly waiting for weight loss can cause an experience of not reaching one's full potential. How people with obesity experience well-being, within their perceived limitations, is less reflected in previous research.Methods: We established a qualitative study using in-depth interviews with seven men and 14 women with obesity (body mass index 335 kg/m2) aged 18-59 years. The study had an exploratory design including a phenomenological-hermeneutic perspective, with a lifeworld approach.Results: Three themes describing aspects of well-being were developed: coming to terms with the body, restoring the broken relational balance and reorienting the pivot in life. The thematic findings were abstracted into a main theme: striving to make living bearable. The movement towards well-being can be seen as a struggle towards an experience of balance to make bearable living.Conclusions: We suggest that well-being as a dialectic between vulnerability and freedom might become a health-facilitating experience for people struggling with obesity.

Nurses' experiences with health care in pain clinics: A qualitative study.

BACKGROUND: Recent research has focused on the effectiveness of different treatment regimens in pain clinics, where a call for more multifaceted treatment has been highlighted. Less attention has been paid to improvements within pain clinics, and how registered nurses-who usually play a key role-perceive and experience the accessibility, treatment options and follow-up offers at public pain clinics. OBJECTIVE: The overall aim was to explore and describe how nurses experience health care provided to patients with chronic non-cancer pain at pain clinics. METHODS: We used 10 individual interviews with nurses working at 10 different public pain clinics in Norway. The interviews were analyzed using qualitative content analysis. RESULTS: One theme was developed from the content analysis: "Nurses' striving to provide whole-person care in pain clinics." The nurses experienced allocation of limited resources as challenging, especially when the dilemma between accepting new patients from the waiting list and offering follow-up to existing patients became apparent. Multifaceted treatment was perceived as vital, although resources, priorities, and theoretical understanding of pain within the team were challenging. CONCLUSIONS: The needs for multifaceted and integrated treatments in chronic pain management were obvious, although this approach appeared to be too demanding of resources and time. Stronger cooperation between pain clinics in specialist care and health care providers in primary care to ensure better patient flow and treatment is required. Emphasis is placed on coherent theoretical approaches to pain management within the team in the pain clinics to ensure whole person care.

Living with obesity - existential experiences.

Aims and objectives: The aim was to gain in-depth understanding about individuals' existential experiences of living with obesity. Background: People living with obesity face great vulnerability and existential challenges. The different treatments offered do not seem to meet the individual needs of persons with obesity. A deeper understanding of existential experiences from an individual perspective is needed to individualize treatment. Design: An exploratory phenomenological-hermeneutical design was used to gain a greater understanding of the existential experiences involved in living with obesity. Methods: The participants represented a convenient sample. 18 qualitative interviews were conducted and subjected to phenomenological-hermeneutical analysis. Results: Four themes emerged: shaped by childhood; captured by food; depressed by the culture; and judged by oneself. Conclusions: The burden of being obese can be experienced as being objectified and alienated as a human being. We need to turn towards a life-world perspective, seeing each human being as a living body to overcome objectification and alienation, and then move them towards becoming subjects in their own lives, through giving space for self-love. Health care workers need to assist persons living with obesity to reduce objectification and alienation. It is important to develop intervention that has an individual, holistic approach.

Mind the Gaps: A Qualitative Study Combining Patients' and Nurses' Reflections on Pain Care.

Chronic noncancer pain is a serious health problem, one that is often associated with physical debility and emotional suffering. Although chronic noncancer pain is one of the primary reasons that people seek medical care, a significant body of evidence indicates that chronic pain is underdiagnosed and undertreated. There is a consensus among professional stakeholders in pain care that there is a need to strengthen quality, capacity, and competence in pain management at all levels of health care. Thus, there is a need for more in-depth knowledge of both the recipients and the providers of pain care, and qualitative studies can contribute to this. The aim is to explore and combine the perspectives of patients receiving pain care and registered nurses providing care at pain clinics. A multimethod design was based on two qualitative studies consisting of semistructured interviews with patients receiving pain care (N = 10) and nurses providing pain care at pain clinics (N = 10). Qualitative content analysis was applied to interpret and abstract their experiences. The themes developed from triangulation revealed significant gaps between ideal pain care and actual practice: "Dissonance in reflections on personalized care," "A corresponding need for improved information flow in all levels," and "A corresponding need for improved structure in pain care." We suggest a stronger commitment to efficient information flow and person-centered communication to facilitate the patient involvement and self-management. In addition, more resources, education, and training are necessary to enable nurses and other professionals to act upon guidelines and ensure effective pain care.

Living with chronic pain: Patients' experiences with healthcare services in Norway.

AIM: To explore the experiences with healthcare received by people living with chronic nonmalignant pain in Norway. DESIGN: A descriptive and explorative qualitative design. METHODS: A total of 18 individual semistructured interviews was conducted in 2015. Qualitative content analysis was applied. RESULTS: The findings revealed challenges related to a multifaceted pain condition. Participants described interactions with a supportive health care where being listened to, believed in and experiencing mutual trust were emphasized. When interactions with healthcare professionals made the participants feel insignificant, they found it difficult to express their needs, which seemed to reinforce practical difficulties and unfulfilled expectations and make them lose hope in their recovery. This implies the importance of a holistic understanding of and support for more person-centred practice to accommodate patients' expectations and expressed needs. Here, the nurses have an essential role in having a positive impact on future healthcare services.

Living a meaningful life with chronic pain - further follow-up.

Living a meaningful life with chronic pain seems to depend on the patient having the leading role in their own life. Adequate assistance from healthcare professionals should be balanced during changing circumstances. Successful follow-up demands an independent biopsychosocial-spiritual-existential perspective, where patient-centered care and a focus on resilience go together.

Next of kin's experiences of information and responsibility during their older relatives' care transitions from hospital to municipal health care.

AIMS AND OBJECTIVES: To gain an understanding of how next of kin experience the transition of their older relatives from hospital to municipal health care. BACKGROUND: During the care transition of their older relatives, next of kin experience a period of ill-defined roles and expectations. Successful transition lays the ground for postdischarge treatment and care, in which next of kin have important roles. DESIGN: A descriptive, exploratory design was used to gain a greater understanding of the experiences of next of kin during their older relatives' care transitions. METHODS: We conducted qualitative interviews of 13 next of kin of patients aged ≥80 years who had been discharged from the hospital to municipal care. Qualitative content analysis was used to analyse interviews. RESULTS: The main theme, 'Next of kin balance multiple tasks during older relatives' care transitions', emerged from two subthemes: 'Next of kin strive to fulfil informational needs during care transition' and 'Next of kin take responsibility for the older relative during care transition'. CONCLUSIONS: Next of kin have the challenging role of letting their older relative manage self-care during transition, when able, while being prepared to act on behalf of their relative as needed. Insufficient information and significant responsibilities contribute to unnecessary concerns and worries among next of kin. RELEVANCE TO CLINICAL PRACTICE: Nurses in both hospitals and municipal health care will benefit from knowing more about the experiences of next of kin; this may ensure continuity of care during transitions and diminish unnecessary worries and concerns. Clinical nurses should be sensitive to the next of kin's need for support so the next of kin can better manage their older relatives' care after homecoming.

Older patients' experiences during care transition.

BACKGROUND: A fragmented health care system leads to an increased demand for continuity of care across health care levels. Research indicates age-related differences during care transition, with the oldest patients having experiences and needs that differ from those of other patients. To meet the older patients' needs and preferences during care transition, professionals must understand their experiences. OBJECTIVE: The purpose of the study was to explore how patients ≥80 years of age experienced the care transition from hospital to municipal health care services. METHODS: The study has a descriptive, explorative design, using semistructured interviews. Fourteen patients aged ≥80 participated in the study. Qualitative content analysis was used to describe the individuals' experiences during care transition. RESULTS: Two complementary themes emerged during the analysis: "Participation depends on being invited to plan the care transition" and "Managing continuity of care represents a complex and challenging process". DISCUSSION: Lack of participation, insufficient information, and vague responsibilities among staff during care transition seemed to limit the continuity of care. The patients are the vulnerable part of the care transition process, although they possess important resources, which illustrate the importance of making their voice heard. Older patients are therefore likely to benefit from more intensive support. A tailored, patient-centered follow-up of each patient is suggested to ensure that patient preferences and continuity of care to adhere to the new situation.

Loneliness, loss, and social support among cognitively intact older people with cancer, living in nursing homes--a mixed-methods study.

BACKGROUND: Loneliness is a significant psychosocial effect following a cancer diagnosis and may prevent people from engaging in social activities, thus creating difficulties in interpersonal relationships. This study investigated loneliness and social support among cognitively intact nursing home residents with cancer by using a quantitatively driven mixed-methods design with sequential supplementary qualitative components. METHODS: The quantitative component consisted of face-to-face interviews of 60 nursing home residents (≥65 years) using the one-item Loneliness Scale and the Social Provisions Scale. The supplementary psychosocial component consisted of qualitative research interviews about experiences related to loneliness with nine respondents. RESULTS: The quantitative results indicated that reassurance of worth was associated with loneliness. The experience of loneliness was identified by the following: loneliness that was dominated by a feeling of inner pain, feeling of loss, and feeling small. Loneliness was alleviated by the following: being engaged in activities, being in contact with other people, and occupying oneself. CONCLUSION: Enhancing the lives of nursing home residents with cancer requires attending to the residents' experience of loneliness and social relationships in a targeted and individualized manner. This might require screening all nursing home residents for early detection of loneliness. Revealing factors that may contribute to or reduce loneliness improves the ability to enhance people's lives.

Suffering and mental health among older people living in nursing homes-a mixed-methods study.

Background. Knowledge about mixed-methods perspectives that examine anxiety, depression, social support, mental health and the phenomenon of suffering among cognitively intact NH residents is scarce. We aimed to explore suffering and mental health among cognitively intact NH residents. Methods. This study used a mixed-methods design to explore different aspects of the same phenomena of interest to gain a more comprehensive understanding. The qualitative core component comprised a qualitative interview from 18 nursing home residents (≥65 years) about experiences related to pain, grief and loss. The supplementary component comprised interview from the same respondents using the SF-36 Health Survey subscales, the Hospital Anxiety and Depression Scale and the Social Provisions Scale. Results. The individual descriptions reveal suffering caused by painful experiences during life. The quantitative results indicated that symptoms of anxiety and depression were related to mental health and symptoms of anxiety were related to bodily pain and emotional role limitations. Attachment and social integration were associated with vitality and social functioning. Discussion. To improve the situation, more attention should be paid to the residents' suffering related to anxiety, depression and psychosocial relations.

Suffering and transition strategies in adult patients attending a chronic pain management programme.

AIMS AND OBJECTIVES: To develop a deeper understanding of suffering and useful transition strategies in patients after participation in a chronic pain management programme. BACKGROUND: Chronic pain is a complex, multifaceted, individual experience. Limitations in patients' ability to perform their usual activities, as well as social isolation, are frequently reported. This condition may include a state of suffering that leads to challenges with transitions, for which support, guidance and achievement of useful strategies are needed. DESIGN: Qualitative study with a descriptive and explorative design from a phenomenological perspective. METHODS: A phenomenological-hermeneutic approach was used to analyse interviews with 12 participants in a group-based cognitive-behavioural therapy management programme. RESULTS: Suffering from chronic pain means handling difficult thoughts and feelings. Expression of these thoughts and feelings through group support and therapeutic writing alleviates suffering. In addition, new perspectives through active involvement in the cognitive-behavioural therapy programme indicate a transition towards adaptation to the chronic pain situation. CONCLUSION: Qualitative analysis of participation in a cognitive-behavioural therapy programme deepens our understanding of both patient suffering and helpful transition strategies towards adaptation. Group participation in the programme appeared to be useful in improving patients' ability to handle challenging experiences with transitions. It is essential that the patients play an active role in adaptive transitions by developing new perspectives and insight. RELEVANCE TO CLINICAL PRACTICE: It is an important activity for nurses or other healthcare workers to assist in the transition process so that the patient can take an active role to achieve alleviation. Focus on transition conditions seems to be helpful because it considers the factors that might facilitate successful transitions towards optimal adaptation.

Therapeutic elements in a self-management approach: experiences from group participation among people suffering from chronic pain.

OBJECTIVE: Chronic pain is a complex, multifaceted subjective experience that involves the whole person. Self-management is the dynamic and continuous process of adapting one's situation to the cognitive, behavioral, and emotional responses necessary to maintain a satisfactory quality of life. Approaches based on cognitive behavioral therapy (CBT) are described as appropriate in assisting people suffering from chronic pain because they challenge maladaptive beliefs and behaviors in relation to pain. This study aimed to explore patients' experiences of therapeutic elements from group participation in a chronic pain management program. METHODS: A qualitative research design with a phenomenological hermeneutic approach was used. Six months after participation in the 8-week course, 34 participants formulated and submitted written reports based on open-ended questions related to their group participation and self-help achievement. These reports were analyzed by elements of qualitative content analysis. RESULTS: THE ANALYSIS RESULTED IN TWO SUBTHEMES: "The significance of active involvement in gaining new insight" and "The significance of community and group support." These were abstracted in the main theme: "Successful self-management is related to several significant contributions in the group." CONCLUSION: An active role with writing, self-revelation, and exchanges of thoughts and feelings in the group seemed to be the key tools for success. In addition, group support and access to other group members' experiences were significant therapeutic elements. We suggest that successful self-management requires knowledge of essential therapeutic elements. In a CBT-based group approach, such elements may offer an important health care contribution.