Dignity-conserving care for persons with palliative care needs - identifying outcomes studied in research: An integrative review.

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.

How to conserve dignity in palliative care: suggestions from older patients, significant others, and healthcare professionals in Swedish municipal care.

BACKGROUND: An 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. METHODS: This 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. RESULTS: With 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. CONCLUSIONS: As 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.

Envisioning the future as expressed within family health conversations by families of persons suffering from stroke.

BACKGROUND: The whole family is affected when a person suffers from stroke, but few studies have focused on families' expectations following the stroke. OBJECTIVE: The 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. METHOD: In this study, seven families with a member ≤65 years 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. RESULT: The 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. CONCLUSION: The 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.

Dignity-conserving care actions in palliative care: an integrative review of Swedish research.

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.

Recognizing European cancer nursing: Protocol for a systematic review and meta-analysis of the evidence of effectiveness and value of cancer nursing.

AIM: To identify, appraise and synthesize the available evidence relating to the value and impact of cancer nursing on patient experience and outcomes. BACKGROUND: There 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. DESIGN: A systematic review and meta-analysis using Cochrane methods. METHODS: We 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. DISCUSSION: This 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.

A Family Systems Nursing Approach for Families Following a Stroke: Family Health Conversations.

Stroke in midlife is a life altering, challenging experience for the whole family thereby necessitating a family approach to intervention. The aim of this study was to describe the experiences of 17 family members living in Sweden, including seven adult stroke patients (six males; one female) under the age of 65 who participated in a series of three nurse-led family conversations that were offered in each family's home. These Family Health Conversations (FamHC) were guided by the conceptual lens of Family System Nursing. Individual, semi-structured, evaluative interviews conducted with each participant one month after the FamHC were analyzed by qualitative content analysis. The FamHC were described by family members as a unique conversation that they had not previously experienced in health care contexts. Family members described possibilities for relational sharing and meaningful conversations as well as changes in family functioning that support the suitability of FamHC for family stroke care.

Dignity-conserving care in palliative care settings: An integrative review.

AIMS AND OBJECTIVES: To report an integrative review of evidence relating to dignity-conserving care in palliative care settings. It will also suggest avenues for future research. BACKGROUND: Research suggests that dignity is welcomed by those receiving palliative and end of life care. However, as dignity is a subjective term, it is not always explicit how this may be employed by nurses. Given that the preferred place of care for patients with palliative care needs is the home, the issue of dignity may be particularly important for community nurses. Therefore, synthesising evidence of dignity-conserving care for community nurses caring for people with palliative care needs provides clarity in a complex area of palliative care research. DESIGN: Integrative literature review. METHOD: The review involved key bibliographic and review databases CINAHL, MEDLINE, EMBASE, ASSIA and PsycInfo. Medical Subject Headings and free terms were undertaken for articles published from January 2009-September 2014 and retrieved papers were assessed against inclusion criteria. Final included articles were reviewed for reported dignity-conserving care actions, which were classified under nine themes of the Dignity Model. RESULTS: Thirty-one articles were included. Nine Dignity Model themes were used to classify care actions: Level of Independence; Symptom Distress; Dignity-Conserving Perspectives; Dignity-Conserving Practices; Privacy Boundaries; Social Support; Care Tenor; Burden to Others; and Aftermath Concerns. Reported care actions included listening, conveying empathy, communication and involving patients in care. CONCLUSION: Care actions could be classified under most of Dignity Model themes. However, there were less reported care actions related to Level of Independence and Aftermath Concerns, which meant that these had to be formulated independently. Future research should be structured around these areas to determine appropriate care actions for nurses to give dignity-conserving care that addresses these specific themes. RELEVANCE TO CLINICAL PRACTICE: Synthesising the available evidence of dignity-conserving care identifies evidence-based care actions and provides guidance to nurses in clinical practice caring for patients with palliative care needs. Future opportunities for research are identified to guide promotion of dignity in palliative care.

Nurses' fidelity to theory-based core components when implementing Family Health Conversations - a qualitative inquiry.

BACKGROUND AND AIM: A family systems nursing intervention, Family Health Conversation, has been developed in Sweden by adapting the Calgary Family Assessment and Intervention Models and the Illness Beliefs Model. The intervention has several theoretical assumptions, and one way translate the theory into practice is to identify core components. This may produce higher levels of fidelity to the intervention. Besides information about how to implement an intervention in accordance to how it was developed, evaluating whether it was actually implemented as intended is important. Accordingly, we describe the nurses' fidelity to the identified core components of Family Health Conversation. INTERVENTION AND RESEARCH METHODS: Six nurses, working in alternating pairs, conducted Family Health Conversations with seven families in which a family member younger than 65 had suffered a stroke. The intervention contained a series of three-1-hour conversations held at 2-3 week intervals. The nurses followed a conversation structure based on 12 core components identified from theoretical assumptions. The transcripts of the 21 conversations were analysed using manifest qualitative content analysis with a deductive approach. RESULTS AND CONCLUSION: The 'core components' seemed to be useful even if nurses' fidelity varied among the core components. Some components were followed relatively well, but others were not. This indicates that the process for achieving fidelity to the intervention can be improved, and that it is necessary for nurses to continually learn theory and to practise family systems nursing. We suggest this can be accomplished through reflections, role play and training on the core components. Furthermore, as in this study, joint reflections on how the core components have been implemented can lead to deeper understanding and knowledge of how Family Health Conversation can be delivered as intended.

Examining Family Responses to Family Systems Nursing Interventions: An Integrative Review.

To add to the small, but growing, number of literature reviews of family interventions in health care, a systematic literature search of Family Systems Nursing intervention research resulted in the inclusion of 17 empirical research reports. Family Systems Nursing intervention research to date has primarily used qualitative methods and a few quasi-experimental designs using pre-post outcome measures. Families' responses to Family Systems Nursing interventions were categorized in this integrative review using the cognitive, affective, and behavioral domains of family functioning proposed by Wright and Leahey. Family response in the cognitive domain found improved understanding, capability, and enhanced coping. The affective response categories showed caring more about each other and the family, improved family emotional well-being, and improved individual emotional well-being. Finally, family responses in the behavioral domain comprised caring more for each other and the family, improvement in interactions within and outside family, and healthier individual behavior. These findings may guide the design of future family nursing intervention research and the selection of family outcome measures to examine the usefulness of Family Systems Nursing interventions. More intervention research using experimental and quasi-experimental designs is needed to strengthen the evidence for Family Systems Nursing practice.

Evaluation of the Dignity Care Pathway for community nurses caring for people at the end of life.

BACKGROUND: People nearing the end of life fear loss of dignity, and a central tenet of palliative care is to help people die with dignity. The Dignity Care Pathway (DCP) is an intervention based on the Chochinov theoretical model of dignity care. It has four sections: a manual, a Patient Dignity Inventory, reflective questions, and care actions. METHOD: The feasibility and acceptability of the DCP were evaluated using a qualitative design with a purposive sample of community nurses. Data was collected from April to October 2010 using in-depth interviews, reflective diaries, and case studies and then analysed using framework analysis. RESULTS: The DCP was acceptable to the community nurses, helped them identify when patients were at the end of life, identified patients' key concerns, and aided nurses in providing holistic end-of-life care. It requires the nurse to have excellent communication skills. Some of the nurses found it hard to initiate a conversation on dignity-conserving care. CONCLUSION: The DCP helps nurses to deliver individualised care and psychological care, which has previously been identified as a difficult area for community nurses. All of the nurses wished to continue to use the DCP and would recommend it to others.

Like a Wave in Its Variable Shape, Breadth, and Depth: A Qualitative Interview Study of Experiences of Daytime Sleepiness in People with Parkinson's Disease.

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.

Identifying care actions to conserve dignity in end-of-life care.

Community nurses have a central role in the provision of palliative and end-of-life care; helping people to die with dignity is an important component of this care. To conserve dignity, care should comprise a broad range of actions addressing the distress that might impact on the patient's sense of dignity. These care actions need to be defined. This study aims to suggest care actions that conserve dignity at the end of life based on evidence from local experience and community nursing practice. Data were collected by focus group interviews and analysed by framework analysis using the Chochinov model of dignity as a predefined framework. Suggestions on care actions were given in relation to all themes. As part of a multi-phase project developing and testing a dignity care pathway, this study might help community nurses to conserve dying patients' dignity.

Community nurses' experiences of the Swedish Dignity Care Intervention for older persons with palliative care needs - A qualitative feasibility study in municipal home health 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.

Mental health in significant others of patients dying from lung cancer.

OBJECTIVE: Definitions and measures of significant others' mental health vary, but stress processes have been associated with caregiver outcomes of this kind. Thus, various mental health outcomes probably appear, either as specific responses to particular types of caregiver stressors, or as part of a general response resulting from an accumulation of various stressors. The present study explores the occurrence of symptoms of strain with regard to depression, exhaustion, and emotional well-being in significant others of patients dying from lung cancer, and how these symptoms coexist. METHODS: Measures used were the Montgomery Asberg Depression Rating Scale, the OLdenburg Burnout Inventory, and the Swedish Health-Related Quality of Life Survey. Data from 84 significant others of patients dying from lung cancer were collected at a time-point during the last 4 months before the patients died and subsequently analysed. The occurrence of symptoms of strain was established by creating cut-off scores from the general population. To explore how the different symptoms coexisted, hierarchical agglomerative cluster analyses were conducted using Ward's method. RESULTS: Approximately 40% of the significant others reported symptoms of strain for each of the three outcomes, and a coexistence was found since the significant others clustered as subgroups, ranging from 'high on all scales' to 'low on all scales'. CONCLUSION: A considerable proportion of the significant others were thus negatively affected in terms of mental health. We conclude that being a significant other of a person dying from lung cancer most likely results in a general response to this major life event.

What matters to you? - Free-text comments in a questionnaire from patients undergoing radiotherapy.

BACKGROUND: Most cancer patients undergo external radiotherapy (RT) at some stage during their treatment trajectory and RT is often associated with unfamiliar procedures in a highly technical environment. The purpose of this study was to explore how patients experience RT and the related processes, as described in free-text comments in a large Swedish survey with questionnaires including items on psychosocial climate and treatment environment. METHODS: The data consisted of free-text comments from one open-ended question: "Is there anything else you want us to know" and were analysed using qualitative content analysis. RESULTS: Of 825 returned questionnaires, 261 contained free-text comments from patients (32%). The hand-written, free-text comments reflected the patients' experience of the RT process and were abstracted into the four major categories with sub-categories: experiencing the high-tech RT environment, understanding the RT procedures and side effects, dealing with daily life during RT, and the nurses' role and performance. The categories reflect the patients' experiences and emphasize how important it is to evaluate what really matters to the patients when changing procedures, practices, and how to minimize disturbances in the patients' daily lives. CONCLUSION: The main conclusions from this study are that the involvement of patients in choosing daily appointment times, providing good information during the RT process to make the patients feel safe, experience and attitude of the staff and respect for the patient's autonomy are highly ranked values for patients. An implementation of person-centred care may help relieve many of these problems.

Translating the Patient Dignity Inventory.

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.

Dignity in life and care: the perspectives of Swedish patients in a palliative care context.

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.

Development in quality of relationship between the significant other and the lung cancer patient as perceived by the significant other.

AIM: To prospectively explore the quality of the relationship between significant others and patients during lung cancer, based on the perceptions of the significant others. METHOD: In a sample of 91 significant others, longitudinal data were collected during the first year after diagnosis, and explored on group level and as individual patterns over time. RESULTS: Relational quality was skewed towards high quality, although 30% of the significant others reported low levels close to diagnosis. Forty-eight percent reported stability in the quality of their relationship during the disease trajectory. Within this group, 36% reported low levels of relational quality. Fifty-two percent reported change in quality of relationship and four typical patterns of change were identified. Two showed approximate linear changes in either a positive direction (15%) or a negative direction (49%), and two showed non-linear changes with a temporary ascending curve (11%) or a descending curve (26%). This implies that a change towards low levels of relational quality was most common. CONCLUSION: The present results show that illness may be a trigger for change in relational quality, which may have implications for future family-centred practice and research, since previously high relational quality has been linked to improved emotional well-being.

A scoping review of trials of interventions led or delivered by cancer nurses.

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.

Translation and cultural adaptation of the Piper Fatigue Scale for use in Sweden.

The aim of this study was to translate and culturally adapt the revised Piper Fatigue Scale to Swedish. For translation, guidelines for cross-cultural adaptation were used. Two teams independently translated the instrument and two other teams produced back-translations, after which a multidisciplinary committee decided on a Swedish version. In pre-test interviews, ten cancer patients were encouraged to think out loud while completing the Swedish version. Their verbal responses were analysed and used for a second revision. The initial translations varied in words, expressions and grammar, shown in a lack of equivalence to the original instrument after back-translation. In order to establish semantic equivalence, the committee changed some grammatical constructions, and some words were replaced for experiential and conceptual equivalence. When analysing the pre-test, obscurities due to the phrasing of some items were revealed and dealt with in the second revision. This study does not fulfil the process of validation for a translated instrument but offers a sound basis for further accumulation of evidence for validity, and facilitates the choice of an appropriate instrument for studying cancer-related fatigue in Sweden.