Abstract 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.

Introduction. Daytime sleepiness is a common nonmotor symptom in Parkinson’s disease (PD) which is associated with decreased quality of life and perceived health. However, experiences of daytime sleepiness in people with PD have not been explored. The aim of this qualitative study was to explore experiences of daytime sleepiness in people with PD. Materials and Methods. Five women and seven men (42–82 years) with PD for 1.5 to 21 years and excessive daytime sleepiness (i.e., a score of >10 on the Epworth Sleepiness Scale) participated in the study. Data were collected through individual, semistructured, face-to-face interviews and analyzed with qualitative content analysis. Results Three themes of the experience of daytime sleepiness were revealed: (1) not an isolated phenomenon, (2) something to struggle against or accept, and (3) something beyond sleepiness. Conclusion. Daytime sleepiness is a complex nonmotor symptom in PD which manifests itself in several ways. Some experiences are similar, for instance, the attribution of daytime sleepiness to PD and its medical treatment. Differences depend on how sleepiness manifests itself, affects the person, and impacts daily life, as well as whether it causes feelings of embarrassment. Some participants needed to struggle against daytime sleepiness most of the time, and others had found a way to handle it, for example, with physical activity. However, sleepiness may also be used to benefit the person, for example, if they allow themselves to take a power nap to regain energy. The health care professionals can easily underestimate or misinterpret the prevalence and burden of daytime sleepiness because people with PD may describe daytime sleepiness as tiredness, drowsiness, or feeling exhausted, not as sleepiness.

•Cancer nurses are concerned with helping patients cope with common symptoms during cancer, either because of the disease itself or its treatment.•Novel nurse-led interventions provide benefit and usually have focused primarily on troublesome symptoms that impact negatively on people’s lives.•Reporting of novel symptom interventions should be strengthened, with outcome measures, duration of effect and component details made clearer.•This meta-analysis demonstrates the importance of new cancer nursing interventions and their contribution to supportive cancer care.

OBJECTIVES The Swedish Dignity Care Intervention (DCI-SWE) is an intervention for people with palliative care needs to enhance their dignity. The original DCI was developed in Scotland, where it was tested by nurses in municipal care. In this study, the DCI has been tested for the first time in a Swedish home health care context. The aim was to describe experiences of the DCI-SWE from the perspectives of community nurses (CNs). METHODS This was a feasibility study with a qualitative design. Three focus group interviews and one individual interview were performed with CNs (n = 11). Reflective diaries and field notes were written by the CNs and researchers, respectively. Data were analysed using inductive content analysis. RESULTS Two main categories and six subcategories were identified. The first main category, 'Practising the palliative approach while responding to palliative care needs', consisted of the subcategories: gives structure while providing palliative care; gives older people opportunities to be confirmed; and responding to existential and sensitive needs. The second main category, 'Aspects influencing the use of the DCI-SWE' had two subcategories about facilitators and barriers to the use of the DCI-SWE, and another about how to establish the DCI-SWE in the context of home health care. CONCLUSION The DCI-SWE offers CNs an overview of older people's concerns while providing palliative care, and gives the older people opportunities to be listened to. Essential prerequisites for using the DCI-SWE in municipal home health care are that CNs are comfortable holding conversations and are given time and space for these by the organisation. Other aspects facilitating the use of the DCI-SWE are managers' engagement and support, continuing training for CNs and CNs' opportunities for reflection.

•Involvement of patients during the radiotherapy process can improve patient satisfaction and make the patients feel safe.•The experience and attitude of the staff and respect for the patient’s autonomy are highly ranked values for patients undergoing radiotherapy.•An implementation of person-centred care may help patients to become more involved in their care.

Objectives With people living longer, palliative care may be required for lengthier periods of time. This puts demands on healthcare organizations to provide optimal palliative care. Maintaining dignity is central for any person's health and quality of life, but especially for a person with palliative care needs. Dignity-conserving care needs to be evaluated to increase knowledge about outcomes and how to assess these. The purpose of this integrative review was to identify outcomes studied within dignity-conserving care and how these have been operationalized. Methods An integrative review was conducted in 26 quantitative or mixed-method studies and study protocols. Thematic synthesis with an abductive approach was used for analysis. Results Seven themes of studied outcomes were identified, as well as four cluster themes: themes related to Illness-Related Concerns, themes related to the Dignity-Conserving Repertoire, themes related to the Social Dignity Inventory, and themes regarding Overarching Dignity Issues. Most outcomes studied dealt with Illness-Related Concerns within the themes of "Performance, symptoms and emotional concerns" and "End-of-life and existential aspects". Themes linked to the Social Dignity Inventory had the lowest number of outcomes studied. Outcomes regarding overarching dignity issues such as "Dignity-related distress" and "Quality of life" were common. However, the results lacked concrete communication outcomes. Significance of results The results will underpin future research in which dignity-conserving care is implemented and evaluated, and contribute to the provision of evidence-based palliative care. A greater focus on outcomes within cluster themes related to the Dignity-Conserving Repertoire and the Social Dignity Inventory is needed, as is more focus on communication outcomes.

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.

Background: The Patient Dignity Inventory (PDI) is based on an empirically-driven dignity model that has been developed and used for clinically assessing the various sources of dignity-related distress. In a recent review, it received the highest score as a useful instrument in both practice and research in palliative care. The PDI has been adapted to and validated for use in various countries, but not yet Sweden. Aims: To translate the PDI into Swedish, including cultural adaptation for clinical use. Methods: A multi-step process of translation, negotiated consensus, expert group discussion (n=7: four invited experts and three researchers) and cognitive interviewing (n=7: persons with palliative care needs). Findings: Discussion, by the expert reviewers, of both linguistic and cultural issues regarding the content and readability of the translated Swedish version resulted in revisions of items and response alternatives, focusing mainly on semantic, conceptual, and experiential equivalence. A pilot version for cognitive interviews was produced. The analysis of data showed that most of the items were judged to be relevant by the persons with palliative care needs. Conclusion: The process of translation and adaptation added clarity and consistency. The Swedish version of the PDI can be used in assessing dignity-related distress. The next step will be to test this Swedish version for psychometric properties in a larger group of patients with palliative care needs before use in research.

BackgroundAn essential aspect of palliative care nursing is to conserve the dignity of the patient. A Dignity Care Intervention (DCI) has been developed in Scotland to facilitate this role for nurses. The DCI is now being adapted to a Swedish context (DCI-SWE) and a central step is to identify culturally relevant, dignity-conserving care actions. These care actions will be incorporated into the DCI-SWE. Therefore, the aim of this study was to suggest care actions for conserving dignity in palliative care from the perspectives of the patients, significant others (SOs), and health care professionals (HPs) in municipality care in Sweden.MethodsThis study used a descriptive design with a qualitative approach. Data from 20 participants were collected through semi-structured individual interviews with patients (n=3), SOs (n=4), two focus groups with nurses (n=9) and one focus group with physicians (n=4) in two Swedish municipalities. These data were deductively analysed using qualitative content analysis with the Chochinov model of dignity as framework.ResultsWith the Chochinov model of dignity as a framework, care actions based on suggestions from the participants were identified and presented under three themes: Illness related concerns, Dignity conserving repertoire, and Social dignity inventory. The study found both specific concrete care actions and more general approaches. Such general approaches were found to be relevant for several dignity related issues as all-embracing attitudes and behaviours. However, these general approaches could also be relevant as specific care actions to conserve dignity in relation to certain issues. Care actions were also found to be linked to each other, showing the importance of a holistic perspective in conserving dignity.ConclusionsAs part of the adaption of the DCI from a Scottish to a Swedish context, this study added relevant care actions for collaborative planning of individualised care in mutual dialogues between nurses and those they care for. The adapted intervention, DCI-SWE, has the potential to help the nurses in providing palliative care of evidence-based quality.

Background: The Dignity Care Intervention (DCI) was developed in Scotland by Johnston and co-workers for nurses in municipality care, to enhance dignity in persons with palliative care needs. DCI i ...

BACKGROUND:Advances in research and technology coupled with an increased cancer incidence and prevalence have resulted in significant expansion of cancer nurse role, in order to meet the growing demands and expectations of people affected by cancer (PABC). Cancer nurses are also tasked with delivering an increasing number of complex interventions as a result of ongoing clinical trials in cancer research. However much of this innovation is undocumented, and we have little insight about the nature of novel interventions currently being designed or delivered by cancer nurses. OBJECTIVES:To identify and synthesise the available evidence from clinical trials on interventions delivered or facilitated by cancer nurses. DATA SOURCES AND REVIEW METHODS:A systematic review of randomised controlled trials (RCT), quasi-RCTs and controlled before and after studies (CBA) of cancer nursing interventions aimed at improving the experience and outcomes of PABC. Ten electronic databases (CENTRAL, MEDLINE, AMED, CINAHL, EMBASE, Epistemonikos, CDSR, DARE, HTA, WHO ICTRP) were searched between 01 January 2000 and 31 May 2016. No language restrictions were applied. Bibliographies of selected studies and relevant Cochrane reviews were also hand-searched. Interventions delivered by cancer nurses were classified according to the OMAHA System. Heat maps were used to highlight the volume of evidence available for different cancer groups, intervention types and stage of cancer care continuum. RESULTS:The search identified 22,450 records; we screened 16,169 abstracts and considered 925 full papers, of which 214 studies (247,550 participants) were included in the evidence synthesis. The majority of studies were conducted in Europe (n = 79) and USA (n = 74). Interventions were delivered across the cancer continuum from prevention and risk reduction to survivorship, with the majority of interventions delivered during the treatment phase (n = 137). Most studies (131/214) had a teaching, guidance or counselling component. Cancer nurse interventions were targeted at primarily breast, prostate or multiple cancers. No studies were conducted in brain, sarcoma or other rare cancer types. The majority of the studies (n = 153) were nurse-led and delivered by specialist cancer nurses (n = 74) or advanced cancer nurses (n = 29), although the quality of reporting was poor. CONCLUSIONS:To the best of our knowledge, this is the first review to synthesise evidence from intervention studies across the entire cancer spectrum. As such, this work provides new insights into the nature of the contribution that cancer nurses have made to evidence-based innovations, as well as highlighting areas in which cancer nursing trials can be developed in the future.

BACKGROUND:Previous research has proposed that persons in need of palliative care often have a loss of functions and roles that affects social and existential self-image. Moreover, these individuals also commonly suffer from complex multisymptoms. This, together with the situation of facing an impending death, can lead to a loss of dignity. Therefore, supporting these persons' dignity is a crucial challenge for professional nurses. The 'Dignity Care Intervention' addresses the multidimensionality of dignity by identifying patients' dignity-related concerns and suggests care actions to address them. At the present, the Dignity Care Intervention is adapted for implementation in Swedish care settings. Because expressions of dignity are influenced by culture, and an overview of care actions in a Swedish context is lacking, this integrative review aimed to find suggestions from Swedish research literature on what kind of care actions can preserve dignity.METHODS:An integrative literature review was conducted using the databases SwePub and SweMed+. Articles published from 2006 to 2015 and theses published from 2000 to 2015 were searched for using the terms 'dignity' and 'palliative care'. Result sections of articles and theses were reviewed for dignity-conserving care actions synthesised by thematic analysis and categorised under themes and subthemes in Chochinov's model of dignity.RESULTS:Fifteen articles and 18 theses were included together providing suggestions of care actions in all themes and subthemes in the dignity model. Suggested care actions included listening, communication, information, symptom control, facilitating daily living and including patients in decision-making. Additionally, nurses' perceptiveness towards the patients was a core approach.CONCLUSION:The review offers culturally relevant suggestions on how to address specific dignity-related concerns. The adapted Dignity Care Intervention will be a way for Swedish nurses to provide person-centred palliative care that will conserve patients' dignity.

Background : In end of life, the older persons´ experiences of dignity can be affected due to serious illness and life changes, derived from physical, psychological, social and existential dimensio ...

Bakgrund: Utvardering av palliativ vard i Sverige har visat att varden ar ojamlik och att aldre personer far samre palliativ vard. For att framja aldre personers livskvalitet den sista tiden i live ...

•A new instrument to measure the patient’s comfort and experiences during RT.•The instrument gains the patients’ perspectives of the RT procedures.•RTEQ has a possible application for evaluation of newly introduced techniques.

BackgroundThe whole family is affected when a person suffers from stroke, but few studies have focused on families' expectations following the stroke. ObjectiveThe aim of this study was to illuminate what persons with stroke and their family members talk about in Family Health Conversations (FamHCs) with focus on the future and how nurses leading these conversations apprehended the families' future shown in closing letters based on these conversations. MethodIn this study, seven families with a member 65years who had suffered a stroke participated in FamHC in their homes after the person with stroke had been discharged from the rehabilitation clinic. The FamHC comprised a series of three conversations conducted every other week and a closing letter sent by the nurses to the family to conclude the series. In this study, the third conversations were recorded and they and the closing letters were transcribed and analysed using qualitative content analysis. ResultThe family members including the persons with stroke were found to be able to tell their stories and express their feelings, worries, losses, hopes and wishes for the future within the context of the Family Health Conversations. Support within the family was highlighted as essential to the satisfactory management of future situations. ConclusionThe persons with stroke and their belonging family members' vision of the future was reflected over in the light of theories about beliefs, possible selves, hope and suffering, and the findings highlight the need for broader use of family conversations to support persons with stroke and their families to manage the future.

Scoliosis surgery for adolescents is a major surgery with a difficult recovery. In this study, a mixed-methods design was used to broaden the scope of adolescents' experiences of surgery for idiopathic scoliosis and the trajectory of self-reported pain during the hospital stay and through the first 6 months of recovery at home. Self-reports of pain, diaries, and interviews were analyzed separately. The results were then integrated with each other. The trajectory of self-reported pain varied hugely between individuals. Adolescents experienced physical suffering and struggled to not be overwhelmed. The adolescents described the environmental and supportive factors that enabled them to cope and how they hovered between suffering and control as they strived toward normality. This study highlights areas of potential improvement in perioperative scoliosis care in terms of nursing support and pain management.

The delivery of palliative care in the community setting has been recognized as a valued and challenging aspect of nursing care. To this end, care pathways have been shown to support nurses in a variety of settings to deliver individualized patient care. This study provides a qualitative evaluation of an end-of-life intervention known as the Dignity Care Intervention (DCI) based on patients' perspectives. The DCI consists of four sections: a manual, the Patient Dignity Inventory, reflective questions, and evidence-based care actions. A qualitative design underpinned by the philosophy of Merlau-Ponty was employed for the evaluation of the DCI. Data collection included individual interviews with participants (n = 25). Interview data were analyzed using framework thematic analysis. Four theme categories were identified: "experience of DCI,'' "responding to my illness concerns,'' "how illness affects me as a person,'' and "how illness concerns affect my relationships.'' The DCI was found to enable patients to discuss openly important issues with community nurses that they might not otherwise have raised. Participants conveyed satisfaction with the support they received through the DCI. The use of care pathways detailing interventions to manage clinical problems and ensure systematic integration of the best available evidence into care delivery can improve end-of-life care.

AIMTo identify, appraise and synthesize the available evidence relating to the value and impact of cancer nursing on patient experience and outcomes.BACKGROUNDThere is a growing body of literature that recognizes the importance and contribution of cancer nurses, however, a comprehensive review examining how cancer nurses have an impact on care quality, patient outcomes and overall experience of cancer, as well as cost of services across the entire cancer spectrum is lacking.DESIGNA systematic review and meta-analysis using Cochrane methods.METHODSWe will systematically search 10 electronic databases from 2000, with pre-determined search terms. No language restrictions will be applied. We will include all randomized and controlled before-and-after studies that compare cancer nursing interventions to a standard care or no intervention. Two reviewers will independently assess the eligibility of the studies and appraise methodological quality using the Cochrane Risk of Bias tool. Disagreements will be resolved by discussion and may involve a third reviewer if necessary. Data from included studies will be extracted in accordance with the Template for intervention Description and Replication reporting guidelines. Missing data will be actively sought from all trialists. Data will be synthesized in evidence tables and narrative to answer three key questions. If sufficient data are available, we will perform meta-analyses.DISCUSSIONThis review will allow us to systematically assess the impact of cancer nursing on patient care and experience. This evidence will be used to determine implications for clinical practice and used to inform future programme and policy decisions in Europe.

Background: Having a family member living in a residential home affects the entire family and can be hard to handle. Family members require encouraging and open communication support from nurses during and after relocation to a residential home. A Family Systems Nursing intervention, “Family Health Conversations” (FamHC) was conducted in order to strengthen the health of families having relatives at residential home for older people. Objectives: The aims of this study were to evaluate the responses to the Family Health Conversations in families with a member living at a residential home for older people and to integrate the empirical results with a theoretical assumption upon which the intervention was based. Methods: A mixed methods research design was used. The Swedish Health-Related Quality of Life Survey and the Family Hardiness Index were administered before and 6 months after the intervention. Qualitative data was collected by semi-structured interviews with each family 6 months post-intervention. The sample included 10 families comprising 22 family members. Result: Main finding was that FamHCs helped family members process their feelings about having a member living at a residential home and made it easier for them to deal with their own situations. FamHCs helped to ease their consciences, improve their emotional well-being, and change their beliefs about their own insufficiency and guilt. Seeing problems from a different perspective facilitated the families’ thinking in a new way. Conclusion: These findings showed that FamHC could be an important type of intervention to improve family functioning and enhance the emotional well-being.