Background and aim: Palliative care is provided at different care settings by different professionals, making management and organisation of services crucial. A comprehensive tool to systematically evaluate the quality of palliative care and identify potential areas for organizational improvement is highly warranted. The aim was to develop and examine the content validity of a questionnaire evaluating quality of palliative care from the perspectives of healthcare professionals in different care settings: the Quality of Palliative Care Questionnaire – Staff (QPCQ-S).

Methods: This methodological study included booth qualitative and quantitative methods. The QPCQ-S was developed from existing questionnaires. Questions were modified to represent broad perspectives of palliative care before being reviewed by an expert group consisting of researchers in palliative care. A preliminary version was reviewed by healthcare professionals (n = 16), and the response options were examined, based on responses from 98 healthcare professionals who had participated in a development project. Cognitive interviews (n = 13) were performed with healthcare professionals. Finally, the questionnaire was evaluated by 421 healthcare professionals within a nursing home context.

Results: Convergent validity was supported by the expert and advisory groups, and cognitive interviews. Problems with ceiling and floor effects was demonstrated for some items, which resulted in a more differentiated response scale for these items. A majority of the respondents reported the questions as important or fairly important (99.3%), and that the questions had provided them with the opportunity to give a true picture of palliative care (78.9%). However, a majority reported that the questions were difficult or fairly difficult to answer (64.0%), significantly more among nurse assistants compared to nurses, physicians and other professional with academic education (p = 0.031).

Conclusion: The QPCQ-S showed good content validity, and the questions were reported important, giving a true picture of palliative care. Careful preparation is needed considering by whom and in what context the CPCQ-S are best used for evaluation of palliative care.

Purpose: To describe parents’ experiences of the significance of interpersonal interactions for becoming parents and a family during neonatal intensive care. Design and Methods: We employed a qualitative descriptive design with semi-structured family interviews. Ten families were included from four neonatal intensive care units (NICU) in Sweden. Results were evaluated using thematic analysis. Results: The results were presented as two themes: 1) Interactions within the family, and 2) Interactions between parents and staff. Analyses revealed that interpersonal interactions could both facilitate and hinder development in becoming a parent and a family. Conclusion: Interactions within the family and with the staff have an important function in the process of becoming a parent and a family. This process would benefit from a systemic approach, focusing on the family as a unit, as unique individuals, and as parents with unique needs and experiences. Practice implications: Our findings can facilitate changes to reduce the separation between family members (mother-father-newborn-siblings) during their stay in NICU; guiding parents to take care of their child, while being sensitive and balancing their situation as to where they are in their process; supporting the family through joint conversations by listening to the parents and their expectations and experiences both in the NICU and at home; and encouraging parents to do everyday things together outside NICU like an ordinary family. © 2022 The Authors

Living and dying with dignity are fundamental values in palliative care, not only for the patient but also for family members. Although dignity has been studied from the different perspectives of patients in need of palliative care and their family members, family members' thoughts and feelings of dignity have not been given sufficient attention. Therefore, the aim was to describe family members' expressions of dignity in palliative care. The study had a qualitative design; semi-structured individual interviews were conducted with 15 family members of patients in palliative care in a county with a specialist palliative advisory team. Data were analysed using inductive content analysis. The results showed that family members' expressions of dignity are multifaceted and complex. For family members in palliative care, dignity means living as a respected human being in relation to oneself and others. Dignity also includes being able to maintain one's identity, feeling connected to significant others, and being comfortable with the new situation. Two contextual aspects affect family members' dignity: the two-headed paradox and reciprocal impact. Thetwo-headed paradoxmeans that family members want to stay close to and care for the ill person, at the same time want to escape the situation, but when they escape, they want to be close again.Reciprocal impactmeans that family members' feelings and experiences of the situation are closely intertwined with those of the ill person. These results may increase healthcare professionals' understanding and be used in dignified care practices that do not threaten, but instead aim to preserve family members' sense of dignity.

Background When a newborn child requires neonatal intensive care, it is often the beginning of a journey of stress and worry for the parents. Such situations could cause difficulties in problem-solving and communication within the family and result in decreased family functioning. Studies have shown that nurse-led interventions in the form of Family Health Conversations promote family's well-being and functioning and strengthen their relationships. However, this model has not previous been used and evaluated with families who have a child in need of neonatal intensive care. Aim To describe parents' experiences of participating in Family Health Conversations after having a child in need of neonatal intensive care. Method Family interviews were conducted with 12 families from three neonatal intensive care units in southern Sweden, six months after a Family Health Conversations intervention. Data were analysed using qualitative content analysis. Findings The parents experienced the Family Health Conversations as an opportunity to co-create a comprehensive picture of what had happened after their child was born. Parents shared their experiences of the Family Health Conversations in terms of feeling validated and strengthened as individuals, as a couple, and as a family. They found the conversations to be supportive to their well-being and to processing experiences and becoming equipped for the future. The parents reported that it was valuable to talk with conversational leaders who had knowledge in neonatal care and who thereby understood what the parents were talking about. This provided a different type of support compared with other conversational contacts. Conclusion These results highlight the importance of having an early onset of family conversations in order to help the parents to cope with their challenges and improve their well-being.

Objectives For patients' entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample. Methods Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden. Results Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45-0.70 and 0.55-0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (r(s) > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (k(w) = 0.37-0.61).

Research results suggest that illness can undermine patients' dignity and that dignity can be understood as an experience formed in communion with others. The aim of this study was, therefore, to illuminate the meanings of lived experiences of dignity as an intersubjective phenomenon from the perspective of dyads in palliative care. The authors analyzed transcripts from interviews with nine dyads using a phenomenological-hermeneutical method. Within the contexts of the dyadic relationship and the dyadic-health care professional relationship, the authors' interpretation revealed two meanings based on the participants' lived experiences: "Being available," related to responding and being responded to in terms of answerability and we-ness, and "Upholding continuity," linked to feeling attached through the maintenance of emotional bonds and being connected through upholding valued activities and qualities in daily living. The authors further reflected on the meanings in relation to philosophically grounded concepts such as presence, objectification, dependence, and dyadic body.

Background: Nurses and physicians in nephrology settings provide care for patients with end-stage kidney disease receiving hemodialysis treatment along a complex illness trajectory. Aim: The aim was to explore physicians' and nurses' perspectives on the trajectories toward the end of life involving decisions regarding hemodialysis withdrawal for patients with end-stage kidney disease. Research design and participants: A qualitative research approach was used. Four mixed focus group interviews were conducted with renal physicians (5) and nurses (17) in Sweden. Qualitative content analysis was used to analyse data. Ethical considerations: Ethical approval was obtained (Dnr 2014/304-31). Findings and discussion: Findings illuminated multi-faceted, intertwined processes encompassing healthcare professionals, patients, and family members. The analysis resulted in four themes: Complexities of initiating end-of-life conversations, Genuine attentiveness to the patient's decision-making process, The challenge awaiting the family members' processes, and Negotiating different professional responsibilities. Findings showed complexities and challenges when striving to provide good, ethical care which are related to beneficence, nonmaleficence, and self-determination, and which can give rise to moral distress. Conclusion: There are ethical challenges and strains in the dialysis context that healthcare professionals may not always be prepared for. Supporting healthcare professionals in not allowing complexities to hinder the patient's possibilities for shared decision-making seems important. An open and continual communication, including family meetings, from dialysis initiation could serve to make conversations involving decisions about hemodialysis withdrawal a more natural routine, as well as build up a relationship of trust necessary for the advance care planning about the end of life. Healthcare professionals should also receive support in ethical reasoning to meet these challenges and handle potential moral distress in the dialysis context.

Introduction

Interpersonal violence causes illness and suffering for victims and their family members. Emergency nurses are often given responsibility for forensic patients and their family members, but there is limited knowledge of their experiences regarding this task. This study aimed to describe nurses' experiences when caring for victims of violence and their family members in the emergency department.

Methods

Individual interviews were conducted with twelve nurses from seven emergency departments. Data were analyzed using qualitative content analysis.

Results

The analysis resulted in the theme: a challenge to create a caring encounter. Hindering factors comprising this challenge are described under four categories: struggling to intervene and talk about violence; contradictions when caring for family members; being helped by forensic guidelines but needing more knowledge; and dealing with one’s own strong emotions towards violence.

Discussion

Creating a caring encounter is perceived as a prerequisite to providing forensic care. Nurses often felt hindered to act and forensic issues were left unaddressed. Family members are offered little or no support in the aftermath of violence. The hindering factors must be overcome to ensure forensic care for victims of all types of violence.

BACKGROUND: How patients preserve their sense of dignity in life is an important area of palliative care that remains to be explored.

AIMS: To describe patients' perspectives of what constitutes a dignified life within a palliative care context.

METHODS: Twelve palliative care patients were interviewed about their views on living with dignity. Data were analysed using qualitative content analysis.

RESULTS: What constitutes a dignified life during end-of-life care was captured by the theme 'I may be ill but I am still a human being' and presented under the categories 'preserving my everyday life and personhood', 'having my human value maintained by others through 'coherence' and 'being supported by society at large'.

CONCLUSION: Patients' sense of dignity can be preserved by their own attitudes and behaviours, by others and through public support. Health professionals need to adopt a dignity-conserving approach, for which awareness of their own attitudes and behaviours is crucial.