"Unless someone sees and hears you, how do you know you exist?" Meanings of confidential conversations - a hermeneutic study of the experiences of patients with palliative care needs.

BACKGROUND: Patients with palliative care needs live with the reality of limited time due to illness or age, eliciting emotional and existential responses. A failure to address their existential needs can lead to significant suffering. A person-centred approach is paramount to effectively address these needs, emphasising holistic care and effective communication. Although existing communication models focus on predefined frameworks, a need exists to explore more spontaneous and confidential conversations between patients and nurses. Confidential conversations have the potential to build therapeutic relationships and provide vital emotional support, highlighting the need for further research and integration into palliative care practice. This study aims to more deeply understand the meaning of confidential conversations for patients with palliative care needs. METHODS: In-depth interviews were conducted with 10 patients in the context of specialised palliative care. A hermeneutic analysis was used to gain a deeper understanding of the meanings of the conversations. RESULTS: The patients had varying experiences and wishes concerning confidential conversations. They strived for self-determination in finding confidants, seeking trust and comfort in their interactions with nurses. Trust was crucial for creating a safe space where patients could express themselves authentically. In shared belonging, confidential conversations with a nurse provided validation and relief from life's challenges. Experiences of feeling unheard or rejected by a nurse could intensify loneliness, prompting individuals to withdraw and remain silent. Regardless of the motives behind their choices, it was crucial that patients felt respect and validation in their decisions. Their autonomy could thus be recognised, and they felt empowered to make decisions based on their unique preferences. CONCLUSIONS: Patients value trust and understanding, particularly in confidential conversations with nurses, which offer solace, validation and empowerment. However, indifference can increase patients' suffering, fostering self-doubt and reluctance to engage further. To address this, health care can prioritise empathic communication skills, offer ongoing support to nurses, and promote continuity in care through investment in training and resources. Additionally, adopting a person-centred approach in confidential conversations is crucial, considering patients' varying preferences.

Relatives' experiences of care encounters in the general ward after ICU discharge: a qualitative study.

BACKGROUND: Care encounters at general wards have many reasons, and the complexity differs. Some arriving at the ward are relatives of discharged intensive care unit patients', who are usually more fragile than others due to what had happened to them. Research indicates that care encounters leave relatives dissatisfied. There is a lack of studies describing how relatives of adult patients experience the transfer from the intensive care unit. AIM: The purpose of this study was to describe relatives' experiences of care encounters with nurses during their loved ones' stay in the general ward after being discharged from the intensive care unit. METHODS: A qualitative descriptive design with an inductive approach was used. Semi-structured individual interviews were conducted with relatives [n = 14) of patients from different hospitals in Sweden. Data were analysed using content analysis. RESULTS: Relatives expressed feeling a huge responsibility for ensuring the quality of care for their loved ones. It was essential to encounter available, committed, and compassionate nurses in the general ward after being transferred from the intensive care unit. The theme 'longing for trust and struggling to be involved in their loved one's care' was illustrated in the two subthemes of 'wanting to be seen as an important piece of the puzzle' and 'being vigilant and worrying about the quality of care'. CONCLUSION: The relatives of patients experience their needs as unfulfilled in care encounters with nurses at the general ward after transfer from ICU. In order to meet the needs of relatives, nurses require well-developed non-technical skills to establish a compassionate interaction founded on trust and respect for the individual. Future research should investigate how relatives' needs can be met in practice. New nursing innovations are necessary to structure encounters with patients and relatives transitioning from the intensive care unit.

Quality of care during rural care transitions: a qualitative study on structural conditions.

BACKGROUND: Registered nurses are critical for the delivery of high-quality healthcare during care transitions from hospital to home. Older co-morbid patients are most vulnerable during these transitions. A growing population of older adults with a higher prevalence of diseases implies increased demands on healthcare and its quality, which is affected by the environment where healthcare is provided. One can draw inferences on the quality of care when classified into structure, process, and outcome. This study explored registered nurses' perspectives on structural conditions that promote or hinder good quality care during transitions from hospital to home healthcare in rural areas. METHODS: We conducted a reflexive thematic analysis of interviews with 21 registered nurses experienced in care transitions from hospital to home healthcare in a rural area of Sweden. We based the theoretically driven analysis on Donabedian's definition of structures regarding the quality of care. RESULTS: The structural conditions were represented by three themes; (I) "Distances and inaccessibility" explains physical matters such as geographical (in)accessibility, bed (un)availability and electronic aids. (II) "Competence of the actors" explains continuity, knowledge and collaboration among the individuals involved. (III) "Levels of organizational governance" explains laws, expectations, values, and agreements regarding care transitions. All themes involved promoting and hindering factors, mutually influencing aspects of the others. CONCLUSIONS: Care actors, educators, managers, and decision-makers need to understand how structures in the physical, social and symbolic environment interactively affect the quality of care during care transitions since understanding this is a prerequisite for improvements. These aspects must be considered to optimize conditions for high-quality care transitions from hospital to rural home healthcare and implemented continuously to improve transitions within the respective organization and inter-organizationally. According to this study, these aspects are critical in a rural context due to structural care quality influencers such as geographical challenges, difficulties in finding competent staff members, development of technical devices, and access to the Internet.

"Daring to deal with the difficult and unexpected" registered nurses' confidential conversations with patients with palliative care needs: a qualitative interview study.

BACKGROUND: In palliative care, registered nurses provide advanced nursing care to relieve patients' symptoms and increase their quality of life based on physical, mental, social and existential dimensions. Conversations, often about existential issues, are an important part of nursing and can affect quality of life positively. Confidential conversations between patients and nurses occur naturally while other nursing activities are being performed. Despite their great importance for palliative care these are rarely described. AIM: To gain a deeper understanding of how nurses in palliative care experience and describe confidential conversations with patients. METHOD: Secondary analysis of data from 17 open-ended face-to-face interviews with registered nurses in palliative care was conducted. Qualitative content analysis using an inductive approach was used to gain a deeper understanding and analyse the latent content. RESULTS: The confidential conversation was considered an important part of palliative care and is the nurse's responsibility. This responsibility was described as complex and placed various demands on the nurses, both personal and professional. A prerequisite for the conversation was the interpersonal relationship. The conversation allowed the patient to process important matters not previously addressed or put into words. It had no predetermined content, was unplanned and entirely on the patient's terms. For nurses the conversation could be experienced both as draining and a source of power and strength. The nurses also described safeguarding the patient through the conversation. CONCLUSION: Nurses' confidential conversations with patients are essential in palliative care and must be highlighted more to increase the quality of palliative care. The confidential conversations often have an existential content and are challenging for the nurses. Therefore, nurses need time, knowledge, and supervision to increase their conversation skills.

Palliative care in rural areas - collaboration between district nurses and doctors: an interview study.

BACKGROUND: Palliative care requires major nursing interventions as well as medical interventions; thus, both district nurses and doctors are vital to the palliative team. Sparsely populated rural areas are characterised by large geographic distances with the nurses and doctors located far away from each other. If collaboration does not work, this can create challenges for district nurses when managing patients' symptoms. The aim of this study was to describe district nurses' experiences of collaborating with doctors-in-charge during palliative home care in sparsely populated rural areas. METHOD: Semi-structured interviews were conducted with 10 district nurses. Inductive content analysis was used to analyse the data. RESULTS: The experiences of the district nurses are described under the overarching theme of Experiences of acting as the patient's advocate, which is divided into two categories: Feeling secure in oneself and the other person and Feeling alone when collaboration breaks down. CONCLUSION: Consensus and coherence, or lack thereof, between district nurses and doctors affect how collaboration is experienced. Positive experiences are generated when the district nurse and the doctor share a holistic approach, while collaboration is experienced as dysfunctional when the doctor's decisions are not consistent with what the nurse judges to be beneficial to the patient. An understanding of how collaboration across long distances is experienced in rural areas is necessary to enhance collaboration.

Reducing risks in complex care transitions in rural areas: a grounded theory.

PURPOSE: Although previous research indicates that care transitions differ between rural and urban areas, the knowledge of challenges related to care transitions in rural areas appears limited. This study aimed to provide a deeper understanding of what registered nurses' perceive as the main concerns in care transitions from hospital care to home healthcare in rural areas, and how they handle these during the care transition process. METHODS: A Constructivist Grounded Theory method based on individual interviews with 21 registered nurses. RESULTS: The main concern in the transition process was "Care coordination in a complex context". The complexity stemmed from several environmental and organizational factors, creating a messy and fragmented context for registered nurses to navigate. The core category "Actively communicating to reduce patient safety risks" was explained by the three categories- "Collaborating on expected care needs", "Anticipating obstacles" and "Timing the departure". CONCLUSIONS: The study shows a very complex and stressed process that includes several organizations and actors. Reducing risks during the transition process can be facilitated by clear guidelines, tools for communication across organizations and sufficient staffing.

Experiences of participation in bereavement groups from significant others' perspectives; a qualitative study.

BACKGROUND: When death ends a life, the impact of caring for person who suffered a period of illness or disease continues for significant others who are left to grieve. They should be offered support to avoid complicated grief. This can be provided in different ways and individually or in groups. This study aims to describe significant others' experiences of participation in bereavement groups. METHODS: Ten bereavement groups that each met five times offered support for the significant others of deceased loved ones who had been cared for by a palliative-care team. After the five meetings, the grieving members (n = 46) completed written comments about the role of the groups; they also commented one year after participating (n = 39). Comments were analyzed with qualitative content analysis with a directed approach using the theory of a good death according to the 6S's: self-image, self-determination, social relationships, symptom control, synthesis and summation, and surrender. RESULTS: Bereavement groups were found to be a source for alleviating grief for some significant others, but not all experienced relief. Moreover, grief was found to persist during participation. Another finding involved the impact of the role of the palliative home-care team on bereavement support. To evaluate the experience of participating in a bereavement group, the use the 6S's as a model was a strength of the analysis. Bereavement groups could enhance the self and offer relief from grief. Participation was described as social relationships that offered a sense of coherence and understanding in grief. The effects of participation were more meaningful close to the loss and could lose efficacy over time. Bereavement support provided before a loved one's death was seen as valuable. CONCLUSION: Overall, the bereavement groups eased the grief of significant others close to the death of their loved one. However, moving forward, several of the significant others were not sure that their participation eased their grief. To identify persons who may remain in a state of complicated grief, a routine of planned contacts with the bereaved should begin before death and be followed up later than six months after the death of a loved one.

The effect of bereavement groups on grief, anxiety, and depression - a controlled, prospective intervention study.

BACKGROUND: Bereavement groups are believed to be beneficial as preventive interventions to reduce the development of complicated grief for people at risk after the death of a significant other. This study aimed to investigate whether measurable effects on grief, anxiety, and depression could be detected in those participating in bereavement groups compared to non-participating controls. METHODS: Questionnaires covering the Texas Revised Inventory of Grief (TRIG), the Hospital Anxiety and Depression Scale (HADS), and background questions were handed out pre-intervention, five weeks and one year post-intervention to bereaved caregivers invited to bereavement groups. The results were analysed with non-parametric methods. RESULTS: A total of 124 individuals answered the questionnaires, and were divided into three categories: participants, non-participants unable to participate, and non-participants not wanting to participate in bereavement groups. At the one-year follow up, participants and those unable to participate reported higher levels of grief and were more anxious than those not wanting to participate. Depression did not differ between the groups. CONCLUSIONS: Participation in bereavement groups did not produce any effects on grief, anxiety, or depression in comparison to non-participants who were unable to participate. Non-participants who did not want to participate reported lower levels of grief and anxiety than the other two groups.

Routine assessment of performance status during palliative chemotherapy when approaching end-of-life.

PURPOSE: Palliative chemotherapy treatment (PCT) offered late in the cancer disease trajectory may be problematic. It is not easy to accurately calculate whether the potential benefits will outweigh the side-effects. This study investigates whether routine use of the Performance Status in Palliative Chemotherapy questionnaire (PSPC) affects the proportions of patients receiving PCT during the last month of life, care utilization, and documentation routines. A secondary aim was to gather registered nurses' experiences of the PSPC in routine use. METHODS: Eighty incurable patients with cancer who had used the PSPC before PCT were compared to 160 matched controls, using non-parametric tests. Nurses' reflections on the PSPC were collected and reviewed. RESULTS: No significant differences were found between users and non-users of the PSPC in terms of proportions receiving PCT during the last month of life. Higher proportions of patients older than 74 years received PCT than in previous studies (40% versus 17%). Nurses considered the questionnaires to be a valuable complement to verbal information when trying to acquire an accurate picture of patients' performance status. CONCLUSION: At this point in the development of the PSPC we did not find any significant decreases in the proportion of patients receiving PCT during the last month in life. However, as the nurses valued the PSPC, it can be used as a complementary tool in assessment of performance status until further research is conducted.

Challenging situations when administering palliative chemotherapy - a nursing perspective.

UNLABELLED: Palliative chemotherapy treatments (PCT) are becoming more common for patients with incurable cancer; a basic challenge is to optimize tumour response while minimizing side-effects and harm. As registered nurses most often administer PCT, they are most likely to be confronted with difficult situations during PCT administration. This study explores challenging situations experienced by nurses when administering PCT to patients with incurable cancer. METHODS: Registered nurses experienced in administering PCT were asked in interviews to recall PCT situations they found challenging. Inspired by the narrative tradition, stories were elicited and analysed using a structural and thematic narrative analysis. RESULTS: A total of twenty-eight stories were narrated by seventeen nurses. Twenty of these were dilemmas that could be sorted into three storylines containing one to three dilemmatic situations each. The six dilemmatic situations broadly related to three interwoven areas: the uncertainty of the outcome when giving potent drugs to vulnerable patients; the difficulty of resisting giving PCT to patients who want it; and insufficient communication between nurses and physician. CONCLUSION: Nurses who administer PCT are engaged in a complex task that can give rise to a number of dilemmatic situations. The findings may be interpreted as meaning that at least some situations might be preventable if the knowledge and insight of all team members - nurses, physicians, patients, and relatives - are jointly communicated and taken into account when deciding whether or not to give PCT. Forming palliative care teams early in the PCT trajectory, could be beneficial for staff and patients.

Avoiding harmful palliative chemotherapy treatment in the end of life: development of a brief patient-completed questionnaire for routine assessment of performance status.

BACKGROUND: Earlier studies have shown that up to 43% of patients with incurable cancer are treated with palliative chemotherapy in the last month of their lives. Although pretreatment blood tests are acceptable, the patient's general condition may not permit further palliative chemotherapy treatment (PCT). Presently, there is no patient self-assessment tool available to monitor performance status during PCT. OBJECTIVES: To describe the development process of the Performance Status in Palliative Chemotherapy (PSPC) questionnaire, and the testing of its psychometric properties. METHODS: The questionnaire was developed by the authors based on the Eastern Cooperative Oncology Group Performance Status Rating (ECOG PSR) scale as well as their clinical experience with PCT. Adult patients who were diagnosed with epithelial cancers (n = 118) were enrolled to test the PSPC questionnaire for reliability, sensitivity for change, and validity. RESULTS: After stepwise modifications of the PSPC questionnaire, psychometric tests revealed acceptable values for reliability (via a test-retest method), sensitivity for change (via a comparison of patients with progressive disease over time), and validity (via a comparison of the PSPC vs the Edmonton Symptom Assessment System [ESAS]). LIMITATIONS: At this stage of questionnaire development, we are unable to conclude whether the PSPC is superior to the conventional ECOG PSR in the evaluation of performance status and the prediction of chemotherapy response. CONCLUSION: Psychometric tests suggest that the PSPC questionnaire may be a useful patient-completed tool in the late stages of cancer disease to routinely monitor performance status in palliative chemotherapy treatments so as to minimize the risk of inflicting more harm than good.