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.

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.

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.

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.

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.

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.

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.

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.

Adolescents' Experiences of Scoliosis Surgery and the Trajectory of Self-Reported Pain: A Mixed-Methods Study.

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.

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.

Family Health Conversations have Positive Outcomes on Families - A Mixed Method Research Study.

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.

Exploring Injury Panorama, Consequences, and Recovery among Bus Crash Survivors: A Mixed-Methods Research Study.

OBJECTIVE: The aim of this study was to explore physical and mental consequences and injury mechanisms among bus crash survivors to identify aspects that influence recovery. METHODS: The study participants were the total population of survivors (N=56) from a bus crash in Sweden. The study had a mixed-methods design that provided quantitative and qualitative data on injuries, mental well-being, and experiences. Results from descriptive statistics and qualitative thematic analysis were interpreted and integrated in a mixed-methods analysis. RESULTS: Among the survivors, 11 passengers (20%) sustained moderate to severe injuries, and the remaining 45 (80%) had minor or no physical injuries. Two-thirds of the survivors screened for posttraumatic stress disorder (PTSD) risk were assessed, during the period of one to three months after the bus crash, as not being at-risk, and the remaining one-third were at-risk. The thematic analysis resulted in themes covering the consequences and varying aspects that affected the survivors' recoveries. The integrated findings are in the form of four "core cases" of survivors who represent a combination of characteristics: injury severity, mental well-being, social context, and other aspects hindering and facilitating recovery. Core case Avery represents a survivor who had minor or no injuries and who demonstrated a successful mental recovery. Core case Blair represents a survivor with moderate to severe injuries who experienced a successful mental recovery. Core case Casey represents a survivor who sustained minor injuries or no injuries in the crash but who was at-risk of developing PTSD. Core case Daryl represents a survivor who was at-risk of developing PTSD and who also sustained moderate to severe injuries in the crash. CONCLUSION: The present study provides a multi-faceted understanding of mass-casualty incident (MCI) survivors (ie, having minor injuries does not always correspond to minimal risk for PTSD and moderate to severe injuries do not always correspond to increased risk for PTSD). Injury mitigation measures (eg, safer roadside material and anti-lacerative windows) would reduce the consequences of bus crashes. A well-educated rescue team and a compassionate and competent social environment will facilitate recovery. Doohan I , Björnstig U , Östlund U , Saveman BI . Exploring injury panorama, consequences, and recovery among bus crash survivors: a mixed-methods research study. Prehosp Disaster Med. 2017;32(2):165-174.

Development and psychometric testing of an instrument to measure the patient's experience of external radiotherapy: The Radiotherapy Experience Questionnaire (RTEQ).

BACKGROUND: The patient's perception of external radiotherapy (RT) procedures and equipment is important to evaluate as a complement to endpoints such as treatment outcome and reproducibility. There is a lack of a proper, psychometrically robust instrument to evaluate the patient's comfort and experience of the external RT procedure. Hence, this study aimed to develop and test an instrument to measure the patient's experience during external RT. MATERIAL AND METHODS: A preliminary 34-item questionnaire was generated from research literature, expert consultations and patient interviews, and it was distributed to patients (n = 825) at 8 RT units in Sweden. The answers were subjected to item analysis and reduction by using exploratory factor analysis. The reliability of the final questionnaire was evaluated using Cronbach's alpha. Mean scale scores were compared across gender, length of RT and treatment area. RESULTS: Most items were highly skewed towards positive responses. Scree plot analyses of the 34-item correlation matrix identified six underlying themes explaining 68% of the total variance. After item reduction, the 6 themes explained 73% of the variance in a 23-item questionnaire. Cronbach's alpha was satisfactory for all themes (between 0.79 and 0.9). Significant differences between treatment areas were found for two scales: situational unease and situational repose. CONCLUSION: The RT Experience Questionnaire is a tentatively valid and reliable instrument to measure how patients experience the external RT session process and the environment in the treatment room.

The Use of Complementary and Alternative Medicine in Scandinavia.

BACKGROUND: Complementary alternative medicine (CAM) is widely used among patients with cancer. This usage may have potentially harmful effects, especially when combined with anticancer drugs. However, some complementary methods may benefit patients. This review investigated the prevalence of CAM use among patients with cancer in Scandinavia and secondly studied the educational levels of CAM users compared to non-users. MATERIALS AND METHODS: A systematic search of the PubMed library was carried out to locate articles published between January 2000 and October 2015 that investigated prevalence of CAM use among Scandinavian patients with cancer. RESULTS: Twenty-two articles were found, of which nine were included in the review. The prevalence of CAM use was 7.9% to 53%, with an average of 36.0% across all studies. CONCLUSION: Use of CAM is widespread among patients with cancer. Knowledge about CAM should be disseminated to both patients and staff in order to optimise discussions about CAM in clinical practice.

Nurses' perspective of conducting family conversation.

INTRODUCTION: Nurses are in a prime position to manage to support families that have a family member living in a residential home for older people. Nurses' attitudes about meeting patients' family members vary. Studies describe that some nurses consider family members as a burden. But some nurses consider family members a resource and think it is important to establish good relationships with them. AIM: The aim of this study was to describe how registered nurses (RNs) experienced to participate in and conduct the intervention Family Health Conversations (FamHCs) with families in residential homes for older people. METHODS: The intervention FamHC was accomplished at three residential homes for older people. FamHC is a family systems nursing (FSN) intervention developed to support families facing the ill health of someone in the family. One RN from each residential home conducted the conversations. The RNs wrote diary notes directly after each conversation. The RNs were also interviewed 1 month after they had each conducted four FamHCs. The diary notes and the interviews were analysed separately by qualitative content analysis, and the findings were then summarized in one theme and further discussed together. FINDINGS: The main findings were that the RNs experience the conversations as a valuable professional tool involving the whole family. The RNs grasped that silence can be a valuable tool and had learned to attentively listen to what the families were saying without interrupting, allowing them and the families to reflect upon what the family members said. CONCLUSION: The findings show that the FamHC can be helpful for RNs in their work, helping them to perceive and understand the needs and desires of the families.

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.

Experiences With Family Health Conversations at Residential Homes for Older People.

The aim of this study was to highlight family members' experiences of participating in Family Health Conversation (FamHC), based on families in which a family member was living in a residential home for older people. A total of 10 families and 22 family members participated in evaluating family interviews 1 month after participating in FamHC. The interviews were analyzed by qualitative content analysis. The main finding was being a part of FamHC increased family members' insights, understanding, and communication within the family. Getting confirmation from nurses was essential to cope with the new life situation, which also meant that they felt comfortable to partly hand over the responsibility for the older person who moved to the residential home. By being open and expressing their feelings, a bad conscience could be relieved. These findings showed that FamHC could be helpful for family members in adapting to this novel situation.

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.