Denna artikel belyser kortfattat utvecklingen av vårdvetenskaplig forskning om vård i livets slutskede i Sverige från 1970-talet fram till idag. Den visar en ökning av forskningen när det gäller den döende personens, närståendes och personalens perspektiv. Vidare beskrivs exempel på forskning som bedrivs vid Enheten för forskning om vård i livets slutskede vid Ersta Sköndal högskola; en forskningsmiljö som kunnat formaliseras till innehåll och struktur med hjälp av en donation. Exempel ges på projekt med beskrivande och intervenerande designer. Områden som behöver studeras ytterligare är individers/familjens situation i samband med döende och död, döende personer med demenssjukdom och döende och död ur ett mångkulturellt perspektiv och ur ett genusperspektiv. Större mångvetenskapliga forskningsprojekt behövs. En stor utmaning är också att överbrygga gapet mellan forskning och klinisk verksamhet.

Background: Today, many patients undergo surgical procedures in a day surgery setting. The shift from inpatient care to care at the patients' own home following discharge places various demands on patients and their families during the recovery process. There is a need for knowledge of how the postoperative recovery process is perceived, as research indicates a lack of support for patients managing recovery at home.

Objective: To explore day surgery patients' different perceptions of postoperative recovery.

Design: A qualitative design with a phenomenographic approach was used.

Methods and settings: Semi-structured interviews with 31 patients undergoing an orthopaedic, general or urologic day surgical procedure were carried out face to face at the patients' homes, 11-37 days post-discharge. Patients were recruited from two day surgery settings: one private unit and one unit associated with a local county hospital.

Results: The patients perceived postoperative recovery as comprising internal and external prerequisites and implying changes in ordinary life with varying levels of support. The effective production at the day surgery unit was perceived as having an impact on patients' prerequisites for recovery. The results are elucidated in three descriptive categories: 'Conditions for recovery at home', 'The rollback to ordinary life' and 'Being a cog in a flow of care'.

Conclusions: The postoperative phase seems to be a weak link in day surgery care. From the patients' perspective, postoperative recovery following day surgery implies extensive responsibility at home. Patients need knowledge and understanding concerning what constitutes the normal range in recovery and how to manage self-care following their specific surgical procedure. (C) 2013 Elsevier Ltd. All rights reserved.

Cancer support and rehabilitation are suggested to be an integral part of cancer care strategies. This study focuses on comparativeness of cancer support and rehabilitation programmes. The aim of this study was to analyse available cancer support and rehabilitation programmes in Sweden presented as complementary to cancer rehabilitation at cancer clinics. A multiple case study design was chosen in order to inquire the small number of existing supportive and rehabilitative cancer programmes. Based on the structures, processes and outcomes of the nine included programmes, three types of cancer support and rehabilitation programmes were identified: multimodal rehabilitation, comprehensive cancer support and art therapy. Cancer support and rehabilitation programmes offer a variety of activities and therapies which are highly valuable and relevant for people with cancer. The typology of cancer support and rehabilitation programmes and comparability between programmes need further inquiry.

The patient's home is a common setting for palliative care. This means that we need to understand current palliative care philosophy and how its goals can be realized in home-care nursing encounters (HCNEs) between the nurse, patient and patient's relatives. The existing research on this topic describes both a negative and a positive perspective. There has, however, been a reliance on interview and descriptive methods in this context. The aim of this study was to explore planned HCNEs in palliative care. The design was a multiple case study based on observations. The analysis includes a descriptive and an explanation building phase. The results show that planned palliative HCNEs can be described as a process of co-creating possibilities for the patient to reach vital goals through shared knowledge in a warm and caring atmosphere, based on good caring relations. However, in some HCNEs, co-creation did not occur: Wishes and needs were discouraged or made impossible and vital goals were not reached for the patients or their relatives. Further research is needed to understand why. The co-creative process presented in this article can be seen as a concretization of the palliative care ideal of working with a person-centered approach.

Följande artikel är baserad på en avhandling som beskriver människors upplevelser av sin vardag hemma när en i familjen är svårt sjuk och döende och  fokuserar på centrala begrepp som identitet, död och gemenskap. Intervjuer med patienter och deras familjemedlemmar, delvis genomförda över tid, har möjliggjort analyser av berättelser som speglar vardagliga processer, liksom transitioner och rollförändringar. För både patienter och familjemedlemmar medförde vardagen i hemmet en rad fysiska, psykiska och sociala påfrestningar. För familjemedlemmarna innebar det bland annat att dela livet med en förändrad person i en förändrad relation. Vardagen nära döden innebar att möta nya situationer och erfarenheter som utmanade den personliga identiteten; me-ness liksom familjeidentiteten; we-ness.

Daily life close to death involves physical, psychological, and social strain, exposing patients and their family members to major transitions affecting relational patterns and identity. For the individual family member, this often means sharing life with a changing person in a changing relationship, disrupting both individual identity and family identity. Our aim was to deepen the understanding of individual experiences that are important in constructing family identity close to death at home. We performed a secondary analysis of qualitative data collected through 40 interviews with persons with life-threatening illness and the family members who shared everyday life with them. The analysis resulted in interpretive descriptions which provided three patterns important for creating family identity, which we here call “we-ness” close to death. The patterns were: being an existential person, being an extension of the other, and being together in existential loneliness. Together, these three patterns seemed to play a part in the construction of family identity; we-ness, close to death. One important finding was the tension between the search for togetherness in “we-ness” while dealing with an existential loneliness, which seemed to capture an essential aspect of being a family of which one member is dying.

Purpose: To explore the structure and content of pre-planned consultations as part of the care and treatment of patients undergoing surgery for colorectal cancer. Methods: The study was based on 50 transcripts of audio-recorded pre-planned consultations between seven patients and 36 healthcare professionals from the time of diagnosis, pre-operative consultation, discharge consultation and pathology report in a colorectal unit. Results: The spread of consultation time between professions was considerable. Total mean consultation time for patients during the care process (7 consultations/patient) was 111 mm (range 83-191). The mean consultation time for surgeons was 18 min (7-40), anaesthesiologists 12 min (5-18) and nurses 14 min (5-49). Patients took up 40% of the word space, healthcare professionals used 59% and significant others 1%. Word space changed in such a way that the patient became more active towards the final consultation. Neither during the diagnosis consultation nor during the pre-operative consultation did the patients meet the operating surgeon. Six major subjects emerged: general health, diagnosis, surgical procedure, pre-operative preparations, recovery and treatment and follow-up. Conclusions: There is a need for clearer structure in the consultations. Most consultations lacked a clear introduction to the subject of the conversation. The study makes it possible to develop methods and structure for supporting conversations in which the patient is given space to help with the difficult issues present after undergoing surgery for colorectal cancer. The study also contributes to providing knowledge of how to organise surgical consultations in order to optimise person-centeredness, teamwork and clinical efficiency.

The purpose of this study was to compare the level of resilience of people aged > or = 60 years in Sweden and Thailand. In a randomized sample of 422 people in Sweden and a convenience sample of 200 people in Thailand, the level of resilience was measured by using the Resilience Scale. A chi(2)-analysis was used for the differences between proportions. The relationships between the background variables and the resilience scores were analyzed by using stepwise multiple linear regression. The mean scores of resilience were 144 for the Swedish participants and 146 for the Thai participants. The two samples differed in their background characteristics. The Thai participants were more likely to be women, to be widowed, and to have more children, while among the Swedish participants, more women were married and more participants were aged > or = 80 years. Despite different background characteristics, the Swedish and the Thai participants' scores were almost the same on the Resilience Scale. More studies are necessary to address aspects of gender and ethnicity in relation to resilience.

People with advanced dementia disease (ADD) are known to have communication difficulties and thus it presents a challenge in understanding the expressions of these people. Because successful communication presupposes cooperation at least between 2 individuals, both individual's actions must be acknowledged. The aim of this study is to describe nursing staff's ways of understanding the expressions of people with ADD when communicating with them. Interviews from 8 nursing staff were analyzed using qualitative content analysis. Two themes were constructed: “Being in communication” and “Doing communication.” Being in communication means that nursing staff perceive people with ADD as being capable of communication. Doing communication means that nursing staff attempt different individualized strategies to understand what people with ADD communicate. Good care of people with ADD presupposes nursing staff that are willing and able to relate to other people and to maintain good care for people with ADD continuous education and supervision are needed.

Aim: To describe first-year nursing students' experiences of witnessing death and providing end-of-life care.

Methods: This study is part of a larger longitudinal project. Interviews (n=17) were conducted with nursing students at the end of their first year of education. To analyse the interviews (lived-experience descriptions), a thematic analysis, ‘a search for meaning’ (Van Manen, 1997) was applied.

Results: The results are presented within the framework of four separate themes: (1) The thought of death is more frightening than the actual experience, (2) Daring to approach the dying patient and offering something of oneself, (3) The experience of not sufficing in the face of death and (4) Being confronted with one's own feelings.

Conclusion: Nursing students require continuous support and opportunity to reflect and discuss their experiences about caring for dying patients and confronting death throughout the entirety of their education. In addition, teachers and clinical supervisors need to give support using reflective practice to help students to develop confidence in their capacity for caring for dying patients.

Background: The Multidimensional Scale of Perceived Social Support (MSPSS) is a short instrument, developed to assess perceived social support. The original English version has been widely used. The original scale has demonstrated satisfactory psychometric properties in different settings, but no validated Swedish version has been available. The aim was therefore to translate, adapt and psychometrically evaluate the Multidimensional Scale of Perceived Social Support for use in a Swedish context.

Method: In total 281 participants accepted to join the study, a main sample of 127 women with hirsutism and a reference sample of 154 nursing students. The MSPSS was translated and culturally adapted according to the rigorous official process approved by WHO. The psychometric evaluation included item analysis, evaluation of factor structure, known-group validity, internal consistency and reproducibility.

Results: The original three-factor structure was reproduced in the main sample of women with hirsutism. An equivalent factor structure was demonstrated in a cross-validation, based on the reference sample of nursing students. Known-group validity was supported and internal consistency was good for all scales (alpha = 0.91-0.95). The test-retest showed acceptable to very good reproducibility for the items (kappa(w) = 0.58-0.85) and the scales (ICC = 0.89-0.92; CCC = 0.89-0.92).

Conclusion: The Swedish version of the MSPSS is a multidimensional scale with sound psychometric properties in the present study sample. The simple and short format makes it a useful tool for measuring perceived social support.

Modern care is often based on investigations such as laboratory markers and imaging - for example, x-ray or ultrasound. The results contribute to a diagnosis and, if judged necessary, treatment is initiated. This diseased-oriented approach is the prevailing mode of management in modern medicine. In contrast, person-centered care (PCC) takes the point of departure from each person´s subjective experience of illness and its impact on daily life. A patient is considered as a person with emotions and feelings. PCC is considered present within clinical care according to a definition articulated by the Centre for Person Centred Care at the University of Gothenburg (GPCC) when three core components are present: elicitation of a detailed patient narrative; formulated partnership between caregiver and patient and documentation of the partnership in the patient record. Accordingly, when there is an illness requiring care and the person is attended using these components, PCC is being applied. In most situations today, PCC is not applied as the narrative is not fully elicited or the partnership and/or the documentation are not included. It is proposed that the challenge to Society arising from changing demographics can be addressed by implementing PCC and creating an alternative to existing healthcare. The importance and benefits of such an approach on a wider scale is not yet clear as research has been limited to date. Studies in selected patient populations (heart failure and hip fractures), however, have shown promising results. As the population ages, there will be a dramatic increase in healthcare consumption. Even with technological developments, there will be a need for tremendous resources to be dedicated to care. A new organization and attitude from healthcare policymakers and providers above and beyond the present model appears required in order to respond to this demand. As part of such change, person-centred care, with the interaction between healthcare providers and the person of the patient, can facilitate, compensate and develop more effective healthcare services for the future.

Web-based self-management support systems SMSS, can successfully assist a wide range of patients with information and self-management support. O or as a stand-alone service, are e-messages. This study describes how one component of a multi component SMSS, an e-message service, in which patients with breast cancer could direct questions to nurses, physicians or social workers at the hospital where they were being treated, had an influence on safety and continuity of care. Ninety-one dialogues consisting of 284 messages were analysed. The communications between patients and the healthcare team revealed that the e-messages service served as a means for quality assurance of information, for double-checking and for coordination of care. We give examples of how an e-mail service may improve patients' knowledge in a process of taking control over their own care – increasingly important in a time of growing complexity and specialization in healthcare. It remains to be tested whether an e-message service can improve continuity of care and prevent or mitigate medical mishaps.

Ett hållbart sjukvårdsystem kännetecknas av att (människor i) organisationen har förmåga att förutse och upptäcka risker och snabbt kan anpassa sin verksamhet till komplexa situationer på ett för patienten säkert sätt. För att skapa patientsäkerheten i hemsjukvård där många professioner och vårdgivare är involverade behöver vi veta mer om HUR detta går till.

I denna fallstudie identifieras förutsättningar för att skapa säker vård inom specialiserad hemsjukvård (ASIH). Kännetecken på ett hållbart system visar sig i organisationens förmåga att skapa frihetsgrader för personalen att i skarpt läge prioritera och skräddarsy lösningar. Exempel på organisationens förmåga att hantera olika målkonflikter och balansera sina resurser nära gränsen för säkerhet beskrivs. Studien visar att hållbara sjukvårdssystem bygger på långsiktiga investeringar och systematiskt lärande på olika nivåer i systemet.

Bakgrund och syfte Hälso- och sjukvården har blivit alltmer komplex och präglas av avancerad teknik och potenta behandlingar. Den medicinska och tekniska utvecklingen har medfört att avancerad vård idag kan ges i hemmen, exempelvis med apparater för syrgasbehandling, dialys, blodtransfusion eller smärtlindring. Det innebär att patienter med en komplex sjukdomsbild, oftast äldre personer med multimorbiditet i allt större grad kan behandlas i hemmet. Den ökade valfriheten och möjligheten att vårdas hemma har ofta idealiserats eftersom den anses öka patienters och närståendes livskvalitet. Men det kan även medföra nya risker. Många vårdgivare och professioner har tillträde till patientens hem och en sammanhållen vårdplan går lätt förlorad. Därför accentueras frågor om hur ledarskap och organisation påverkar patientsäkerhetsarbetet. Även frågor om ansvarsstrukturer, maktförhållanden, samt förekomsten av ett proaktivt förhållningssätt i relation till risker blir aktuella.

Denna studie ingår i ett på gående forskningsprogram som syftar till att få en bättre förståelse för hur risker identifieras och hanteras i vård av patienter med komplex sjukdomsbild, när den utförs i eller nära patientens hem. Vi studerar hur vårdsystemen utformas på ett sätt så att det skapar förutsättningar för yrkesutövarna i "the sharp end" att bedriva en säker vård.

Metod: Denna fallstudie genomfördes vid enheter som bedriver Avancerad Sjukvård i Hemmet (ASIH) inom Stockholms län. Studien är explorativ och vi använder etnografiska metoder för att identifiera centrala processer på individ och organisationsnivå. Vi genomför deltagande observationer med följande tekniker: semistrukturerade observations protokoll, ljudinspelningar, fältanteckningar samt korta individuella intervjuer med nyckelpersoner. Upprepade individuella intervjuer samt fokusgruppsintervjuer genomfrös med patienter, chefer och medlemmar i det multiprofessionella vårdteamet för att fördjupa materialet. Datainsamling och analys sker i iterativa cykler utifrån principer för teorigenererande forskningsmetod som innebär att nya frågor genereras ur dataanalysen som grund för nästa observation/fokusintervju. Transkriberat material från intervjuer och observationer analyseras med kvalitativa forskningsmetoder.

Resultatet beskriver kännetecken i systemet som bidrar till hållbar och säker vård. Under oförutsedda händelser framkom olika strategier för att förenkla och effektivisera arbetet innanför systemets säkerhetsgränser. Kännetecken på systemets hållbarhet visas genom organisationers förmåga att skapa frihetsgrader för personalen att i skarpt läge prioritera och skräddarsy lösningar. Exempel på strategier och investeringar på olika nivåer i organisationen framkom. Investeringar, i vissa fall genomförda sedan lång tid tillbaka, utgjorde en grund för förmågan att hantera målkonflikter och snabbt fatta autonoma beslut i akuta situationer.

Slutsatser Ett hållbart sjukvårdssystem skapas genom långsiktiga investeringar på olika nivåer, och ett systematiskt lärande i organisationen. Dessa investeringar kommer till uttryck som frihetsgrader för människor i organisationen att agera effektivt och säkert, när ett system utsätts för ovanlig belastning. Resultaten från studien kan öka kunskapen om förutsättningar för säker vård för patienter med komplexa vårdbehov i sina privata hem.

AIM: The aim of this study was to explore what women with recurrent ovarian cancer perceived as important in their communication with the health care team.

METHOD: Interviews were conducted with 12 women at the end of chemotherapy treatment at a department of gynecological oncology in central Sweden. The interviews were subjected to qualitative content analysis.

RESULTS: The findings stress the importance for the health care team to offer each woman the opportunity for support in becoming familiar with the disease. This theme of becoming familiar with the disease is underpinned by four sub-themes: being acknowledged as a unique person, getting help to make sense of information regarding the disease and its treatment, having the opportunity to be involved and to share responsibility, and feeling confident that medical expertise was adequate. Becoming familiar with the disease was expressed as a process of understanding and assimilating the whole new situation. To achieve familiarity, the women needed help from the health care team to make sense of the information they received. They stressed the importance of being able to influence encounters with health professionals, in accordance with their own perspectives. Being acknowledged as a unique person was a prerequisite to achieve familiarity. Also important to the women was having the opportunity to share responsibility for their care and lives with someone from the health care team.

CONCLUSION: Helping women with recurrence of ovarian cancer attain a sense of familiarity with the disease should be an important priority for health care providers.

BACKGROUND: Women with recurring ovarian cancer are living longer, due to advances in treatment options. They are now often outpatients, experiencing rapid encounters on treatment days. Whether this shift in care meets women's needs has been scarcely explored scientifically.

PURPOSE OF THE STUDY: This study aimed to illuminate the phenomenon of living with recurring ovarian cancer as experienced by women in that condition.

METHODS AND SAMPLE: A descriptive phenomenological method was used. Eight open-ended interviews with four women were performed approximately three and five years after the first recurrence of ovarian cancer. During these years the women had repeated clinically and radiologically verified recurrence requiring chemotherapy.

KEY RESULTS: The phenomenon of living with recurring ovarian cancer meant that the women felt forced to pay attention to the failing body in order to avoid a potential breakdown. The growing limitation of their intermittent strength meant that strength had to be captured and protected. Sharing their lives with others was difficult, due to the different living conditions. The women found no space to mediate their experiences, either in close relationships or with health care professionals. But, the circumstances they lived under also generated a gratitude for the unexpected extra time.

CONCLUSIONS: The findings revealed that the four women were grateful to live a while longer, but needed to share their state of being. The findings are indeed directed to health care professionals, who need to provide a more patient-centred care to meet the women's needs.

Caring for people with dementia and working in dementia care is described as having both rewarding and unpleasant aspects and has been studied to a minor extent. This study aims to explore care providers' narrated experiences of caring for people with dementia disease (DD) and working in a private not-for-profit residential care facility for people with DD. Nine care providers were interviewed about their experiences, the interviews were recorded, transcribed and analysed using thematic analysis. The analysis revealed that participants were struggling to perform person-centred care, which meant trying to see the person behind the disease, dealing with troublesome situations in the daily care, a two-edged interaction with relatives, feelings of shortcomings and troubled conscience, and the need for improvements in dementia care. The analysis also revealed an ambiguous work situation, which meant a challenging value base, the differently judged work environment, feelings of job satisfaction and the need for a functional leadership and management. The results illuminate participants' positive as well as negative experiences and have identified areas requiring improvements. It seems of great importance to strive for a supportive and attendant leadership, a leadership which aims to empower care providers in their difficult work. Using conscience as a driving force together in the work group may benefit care providers' health.

Healthcare personnel may perceive troubled conscience when feeling inadequate and powerless. It is important to further explore healthcare personnel’s descriptions of situations in daily work, which generate troubled conscience to increase the awareness of such situations. This study aimed to describe health care personnel's experiences of situations in municipal elderly care that generate troubled conscience. In this qualitative study, interviews were conducted with Registered and Enrolled nurses and nursing assistants (n = 20) working in municipal elderly care. The interviews were tape-recorded, transcribed verbatim and analysed with content analysis. Situations that generated troubled conscience was (i) Being caught between different demands, comprising being forced to prioritize between different residents’ needs, being torn between residents’-/relatives’-/and co-workers’ needs and expectations’ and between work and private life, (ii) Being torn away from residents to other ‘must do’s’, comprising stealing time from residents’ to do housekeeping chore’ and to ‘obey’ rules and recommendations, (iii) Feeling unable to relieve suffering, comprising falling short when striving to help, lacking knowledge, advice and support and time to ease residents’ suffering and finally, (iv) Being part of providing care that is or feels wrong, comprising providing poor care and/or witnessing co-workers providing poor care, and being forced to give care that feels wrong. These findings identify important factors that generate stress of conscience (stress caused by troubled conscience), including difficulties with balancing priorities and following rules and recommendations that seem contrary to best care, and the need for interdisciplinary teamwork. Findings point to that sharing what conscience tells in the work team opens up possibilities for healthcare personnel to constructively deal with troubled conscience. Intervention studies are needed to explore whether such measures contribute to relieve the burden of troubled conscience and increase possibilities to provide high quality care.

AIMS AND OBJECTIVES: In this article, we explore the gender aspects of long-term caregiving from the perspective of women providing home care for a spouse suffering from dementia.

BACKGROUND: One of the most common circumstances in which a woman gradually steps into a long-term caregiver role at home involves caring for a spouse suffering from dementia. Little attention has been paid to examining the experiences and motivations of such caregivers from a feminist perspective.

METHODS: Twelve women, all of whom were informal caregivers to a partner suffering from dementia, were interviewed on the following themes: the home, their partner's disease, everyday life, their relationship and autonomy. The results of these interviews were analysed in relation to gender identity and social power structures using a feminist perspective.

RESULTS: The findings of this study show that the informants frequently reflected on their caregiving activities in terms of both general and heteronormative expectations. The results suggest that the process of heteropolarisation in these cases can be an understood as a consequence of both the spouse's illness and the resulting caring duties. Also, the results suggest that the act of caring leads to introspections concerning perceived 'shortcomings' as a caregiver. Finally, the results indicate that it is important to recognise when the need for support in day-to-day caring is downplayed.

CONCLUSIONS: Women view their caregiving role and responsibilities as paramount; their other duties, including caring for themselves, are deemed less important. We stress that the intense commitment and responsibilities that women experience in their day-to-day caring must be acknowledged and that it is important for healthcare professionals to find mechanisms for providing choices for female caregivers without neglecting their moral concerns.

IMPLICATIONS FOR PRACTICE: Female carers face difficulties in always living up to gendered standards and this need to be considered when evaluating policies and practices for family carers.

Women's position as informal carers has been taken for granted in social policy and social professions, while relatively few discussions have elaborated on caring as a later life activity for men and the impact on family care. This study explores the processes connected to informal caregiving in later life through the position of adult daughters of older fathers engaged with long-term caregiving responsibilities for a partner. A sample of eight daughters, with fathers having primary caregiving responsibility for their ill partners was recruited and in-depth interviews were carried out and analysed according to qualitative procedures. The daughters' descriptions of their relationships with their fathers show that being an older man who engages in caring can have a positive outcome on relations. Even if some of the daughters have doubts about their fathers “masculine authenticity”, all of them appear to cherish “his helping hands” as a carer and closer more intimate relationships with their fathers. Caring for an old and frail spouse may potentially present alternative ways of being a man beyond traditional ‘male activities’ and that caring might also sometimes involve a re-construction of gender identities. It is suggested that social work professionals may use a gendered understanding to assess and work strategically with daughters and other family members who support caring fathers.

Aim: The purpose of this study was to describe how patients perceive the use of the numeric rating scale in postoperative pain assessments.

Background: There are recommendations to use a pain scale to follow patients' postoperative pain. Most patients prefer the NRS but there is a discrepancy between patients and healthcare professionals how to interpret the ratings from the pain assessments.

Methods: A descriptive design with a phenomenographic approach was used. Semi structured interviews were held with 25 patients.

Results: Three description categories emerged that illustrate patients' perceptions; use of the NRS facilitated communication of pain, it put demands on healthcare professionals and care routines and it contained interpretation difficulties.

Conclusion: The NRS has a place in pain management according to the patients but there is a need for a dialogue to give the patients the opportunity to describe their pain and set a common goal. (C) 2014 Elsevier Inc. All rights reserved.

Research suggests that siblings of individuals with severe mental illness are affected by the situation of their affected sibling and that the health care services seem to partly fail in meeting their needs for support. The aim of this study was therefore to explore how siblings of individuals with a psychotic illness, and who have participated in a support group, experience their situation. Thirteen informants participated in focus group interviews, which were analysed by inductive content analysis. The findings were interpreted in an overall single theme: A lonely life journey bordered with struggle. This theme consists of three categories: facing existential thoughts, facing ambiguity in approach and engagement, and facing disparate attitudes and expectations.

The aim of this study was twofold: to compare the functional levels of elderly awaiting nursing home placement and nursing home residents, and to compare their nurses' physical and psychological workloads. In Norway, the demand for nursing home placement has increased greatly. Elderly awaiting placement can receive care from home health care services and/or from their families. Documenting elderly's functional levels may illuminate the extent of the carers' workloads and the need for support during the waiting period. The study was conducted in 2005 on two groups in northern Norway. Using the Multi-Dimensional Dementia Assessment Scale to assess functional levels, one group of nurses assessed elderly awaiting nursing home placement (n = 36) and another group of nurses assessed nursing home residents (n = 47). The nurses also reported physical and psychological workloads in caring for these elderly. A comparison of the functional levels between elderly awaiting nursing home placement and nursing home residents showed few statistically significant differences. Nursing home residents had two lower motor functions, needed more assistance with activities of daily living, more regular administration of enemas, were more often unable to speak, and showed lower orientation levels. Clinically significant similarities were found in five motor functions, including rising from lying to sitting, rising out of bed and walking, and in behavioural and psychiatric symptoms. Both groups of elderly had a high prevalence of sadness and fearfulness. The results of this study indicate that elderly awaiting nursing home placement can be as frail as nursing home residents. These results highlight the elderly's need for assistance and reveal the need for more nursing home beds. Nurses in home health care and nursing homes rated physical and psychological workloads similarly. As many carers provide care 24 hours a day, these results also illuminate the need to support carers during the waiting period.

Aim The aim of this study was to explore experiences with overnight respite care (ORC) of Norwegian carers who provided care to frail elderly awaiting nursing home placement.

Background In many Western countries respite care has become part of health care service provision, and various types of respite care are available. The intent with respite care can be twofold; caring for the care receiver and supporting the carer.

Methods This was a descriptive qualitative study. Interviews were conducted with 15 carers, transcribed and analysed by qualitative content analysis.

Findings The carers described various experiences with ORC. If ORC supported the family unit, it was welcomed by carers and experienced as supportive. If ORC did not support the family unit, many carers rejected ORC, and it was experienced as non-supportive. Two categories were constructed: 'experiencing ORC as supportive for the family as a unit' and 'not experiencing ORC as supportive for the family as a unit'.

Conclusion To support more carers, nurses have to listen to carers’ experiences about ORC. Nurses need to take responsibility for the family as a unit and provide more flexible ORC services based on both carers’ and elderly’s needs.

Objective: To explore how physicians communicatively enable patients' understanding of bodily changes in gastrointestinal cancer care consultations.

Method: Two datasets were used. The first consisted of transcribed video-recorded palliative care consultations with three oncologists and six patients diagnosed with advanced gastrointestinal cancer, in the context of outpatient palliative care. The second dataset was audio-recorded transcriptions from diagnostic consultations with six surgeons and seven patients diagnosed with colorectal cancer, in the context of cancer surgery. An inductively driven and iterative analysis of interaction was performed, guided by Wetherell et al. (2001).

Results: Two overarching communicative strategies were identified: (1) “visualizing strategies,” with the dimensions: visible strategies (visualizing with what you actually or potentially can see), sensory strategies (visualizing with what is possible to feel), and imaginative strategies; and (2) “contrasting strategies,” with the dimensions: contrasting subjective experiences and contrasting between the patient and other people.

Significance of results: The visualizing and contrasting communicative strategies form parts of physicians' tacit and experience-based knowledge. The strategies employed by physicians reveal clear potentials to enable patients' understanding and sense making of bodily changes. However, these strategies need to be explicated and problematized as parts of both consultation practice and basic medical education. By means of increased awareness, physicians can more easily identify turning points in patients' levels of understanding, thereby enriching ordinary medical consultations with reflected pedagogical strategies and skills in how to dialogue in a person-centered manner.

AIM: To explore patients' most distressing concerns during a hospital stay.

BACKGROUND: The characteristics of hospitalised patients have changed. Care is provided at a higher age, lengths of stay have fallen and the nursing workload is increasing. It is presumed that hospitalised patients are more seriously ill and have more palliative needs than previously. Studies show that inpatients suffer from more distress than similar outpatients although there is a lack of overall knowledge about inpatients' distress and major concerns, regardless of age, diagnosis or care setting.

METHODS: This study was part of a point prevalence survey (PPS) concerning symptom prevalence. Of the 710 patients who participated in the PPS, 678 (95%) answered an open-ended question in a questionnaire: What is your main concern or what is most distressing or troublesome for you at present? Using a life-world approach, the text was analysed qualitatively and patients' concerns were interpreted in two main dimensions, an intersubjective dimension and a temporal dimension.

FINDINGS: The patients reported extensive suffering due to illness, symptoms and failing health. Patients were concerned about family members, existential issues and the future. Three aspects of the patients' most distressing concerns were interpreted: The suffering self, The suffering person in close relations and The suffering person in a threatening world.

CONCLUSION: Hospitalised patients are affected by severe illness, distressing symptoms and existential quandaries, revealing extensive human suffering in the midst of the demanding activities that take place during an ordinary day in a hospital. To support patients and alleviate suffering, hospital staff need to be more sensitive to patients' most distressing concerns. This presupposes a hospital environment in which the value system supports caring and comforting behaviour.

Although organizational and situational factors have been found to predict burnout, not everyone employed at the same workplace develops it, suggesting that becoming burnt out is a complex, multifaceted phenomenon. The aim of this study was to elucidate perceptions of conscience, stress of conscience, moral sensitivity, social support and resilience among two groups of health care personnel from the same workplaces, one group on sick leave owing to medically assessed burnout (n = 20) and one group who showed no indications of burnout (n = 20). The results showed that higher levels of stress of conscience, a perception of conscience as a burden, having to deaden one's conscience in order to keep working in health care and perceiving a lack of support characterized the burnout group. Lower levels of stress of conscience, looking on life with forbearance, a perception of conscience as an asset and perceiving support from organizations and those around them (social support) characterized the non-burnout group.

Stress-related illnesses, such as burnout, have increased over the last decade, but not everyone at the same workplace develops burnout, suggesting that individual factors may contribute to this phenomenon. The aim of this study was to describe patterns of personality traits among two groups of health-care personnel from the same workplaces, one group on sick leave due to medically-assessed burnout, and one group with no indication of burnout, respectively. Fourteen psychiatric- (n = 7) and elderly (n = 7)-care units, located in one specific area in a municipality in northern Sweden, participated in this questionnaire-based study. The participants (n = 40), on sick leave due to medically-assessed burnout (n = 20), and those with no indication of burnout (n = 20), respectively, completed Cattell's 16 Personality Factors Questionnaire between February and December 2004. Conventional statistical methods and partial least square regression were used to analyze data. The results showed that the burnout group had lower scores regarding emotional stability and higher scores regarding anxiety than the non-burnout group, but the results also showed a wide variation of personality traits within groups. The most important indicators for belonging to the burnout group were 'openness to changes' and 'anxiety', and for belonging to the non-burnout group, 'emotional stability', 'liveliness', 'privateness' (i.e. forthright or discreet), and 'tension'. The result indicates complex interactions between personality traits and the context in which the individual lives. It seems to be important to increase our awareness of when personality traits may constitute opportunities versus risks in dealing with one's existing circumstances.

According to research applying a social constructionist perspective, the sense of self is not lost in people with Alzheimer’s disease (AD). It is, however, greatly influenced by the symptoms and by how they are treated by other people. Without support, it is difficult to preserve a positive sense of self, when living with progressing cognitive impairments. The stigma associated with cognitive impairment also threatens their sense of self. Harré’s social constructionist theories of self and positioning have been used to study how people with AD express their sense of self. As there is a need to expand the previous research by involving additional participants and research contexts, the aim of the present thesis was to describe, in accordance with Harré’s theories of self and positioning, how people with AD expressed their sense of self in personal interviews and in support groups with other people with AD. The research consists of four substudies (I–IV), and has a qualitative, descriptive, and theory-testing approach. Thirteen people with mild and moderate AD were included, 11 of whom had the early onset form of the disease. Two support groups were formed, led by facilitators who supported the communication and the participants’ expressions of self. Each group met 10 times during an eight-month period. Topics were not predetermined, and introduced by both facilitators and participants. Semistructured interviews were conducted before the groups started and after they ended. The interviews and support group conversations were audio-recoded and analysed with qualitative content analysis, guided by Harré’s theories. In substudy I, the initial interviews were deductively analysed. The findings showed that Self 1 (the sense of being a singular, embodied person) was expressed by the participants without difficulties. Self 2 (the perception of one’s personal attributes and life history) was expressed as feeling mainly the same person. While some abilities had been lost, other had been developed. Self 3 (the socially constructed self) was described as mostly supported, but sometimes threatened in interactions with other people (I). In substudy II, support group conversations were analysed abductively with respect to expressions of Self 2. It was found that participants expressed Self 2 in terms of agency and communion, and a lack of agency and communion (II).In substudy III, a secondary analysis of the data from substudy II was performed inductively with the aim of describing how Self 3 was constructed in the interaction of the support group. Five first-order positions, generating lively interaction, were described: the project manager, the storyteller, the moral agent, the person burdened with AD, and the coping person (III). In substudy IV, all the collected data were reanalysed inductively, focusing on how participants expressed the experience of being research participants. Three themes were constructed: contributing to an important cause, gaining from participating, and experiencing risks and drawbacks (IV). In conclusion, it was found that participants constructed positive social selves through the support from each other, the facilitator, and researchers in the support group (III), and as research participants (IV). Agency and communion were central to Self 2, and decreased with the progression of AD (II). In spite of change, participants perceived themselves as basically the same people, with a potential to learn and develop as persons (I).

The self is constructed in cooperation with other people and social context influences how people perceive and express it. People with Alzheimer’s disease (AD) often receive insufficient support in constructing their preferred selves, but little is known about how they express themselves together with other people with AD. In accordance with Harré’s social constructionist theory of self, this study aimed to describe how five people with mild and moderate AD express their Self 2 (i.e., their personal attributes and life histories) in a support group with a facilitator experienced in communicating with people with AD. The participants’ expressions of their Self 2 were analyzed with qualitative abductive content analysis and interpreted in terms of agency and communion and a lack of agency and communion. The findings highlight the importance of supporting a sense of agency and communion when assisting people with AD in constructing their self.

The sense of self is vulnerable in people with Alzheimer's disease (AD), and might be positively and negatively influenced by research participation. The purpose of this study was to describe how people with AD express their experience of being a research participant with respect to their sense of self. Interviews and support group conversations involving 13 people with mild and moderate AD were analyzed using qualitative content analysis. Three themes were constructed: contributing to an important cause, gaining from participating, and experiencing risks and drawbacks. Participants described contributing to research as being in line with their lifelong values and lifestyles. They expressed contentment and pride about being research participants, emphasized their positive relationships with the researchers, and described participation as a meaningful activity. When research procedures threatened their sense of self, they were able to reason about risks and decline participation.

Symptom distress profiles of patients with a variety of diagnoses at two hospitals in Sweden were examined using a point-prevalence cross-sectional survey design. The sample included 710 patients present on internal medicine, surgery, geriatric, and oncology acute care hospital wards of each hospital on a single day. Symptom distress data were collected via structured interviews using a 0-10 numeric rating scale (NRS). Fatigue was the most prevalent symptom, experienced by 76.2% of the patients, followed by pain (65.2%) and sleeping difficulties (52.8%). Symptoms were fairly distressing (median NRS 5-6). Patients experiencing high distress from fatigue and pain were more likely to be female, living alone, and to have more symptoms. Latent class analysis revealed three symptom distress profiles that differed with respect to the degree of distress and number of symptoms. The profiles were not substantially differentiated by diagnoses. Symptom distress needs to be assessed and treated on an individual basis, rather than predicting distress levels based on diagnosis alone. © 2014 Wiley Periodicals, Inc.

Family members are central in providing care for patients with lifethreatening illness, but they often experience a lack of necessary preparation and knowledge, with a need for information and psychosocial support. The overall aim of this thesis was to investigate participant’s experiences as well as effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care.

Methods: A mixed method design was used. Study I was retrospective descriptive and used a phenomenological method to analyse 10 face-to-face interviews about experiences of participating in the programme. Study II was retrospective descriptive and used qualitative content analysis to analyse 29 telephone interviews about experiences of the programme design. Study III was correlational and used a confirmatory factor analysis to psychometrically evaluate the preparedness for caregiving scale(PCS), caregiver competence scale(CCS) and rewards of caregiving scale(RCS) in 124 family members. Study IV was prospective quasi-experimental and used interferential statistics to investigate effects of the programme, assessing preparedness, competence, rewards, anxiety, depression, hope and health in 125 family members.

Results: The main experiences of participation in the programme were; a sense of safety and belonging, confirmation, insight into the gravity of the illness, and a moment of rest. The programme was experienced as covering topics of interest, structured to make participants feel invited by the caring team and using an open approach that fostered a warm atmosphere. The Swedish versions of PCS, CCS and RCS were shown to be valid and reliable. Family members who participated in the programme significantly increased in preparedness, competence and rewards in relation to caregiving. No significant changes were shown for anxiety, depression, hope and health.

Clinical implications: The results should provide encouragement in the challenging work to develop and deliverer interventions, with the explicit purpose of supporting family members in palliative care.