Background: Palliative care can be given to patients with progressive, incurable disease. In palliative care the patient is seen in a holistic perspective, the goal is to prevent and relieve physical, psychological, social and existential suffering. The four cornerstones of palliative care are symptom relief, teamwork, communication/relation and support to next of kin. The nurse in palliative care builds a relationship with the patient and next of kin. The nurse also works with symptom relief and informing patient and next of kin. Next of kin to patients in palliative care often put themselves aside to care for the patient and wish to be with the patient until the end of the patients’ life. Aim: The aim of the study was to describe next of kins’ need for support from the nurse in end-of-life care in hospitals. Method: A literature study based on nine qualitative articles retrieved through systematic search in database Cinahl. The articles were analysed with a five-step method. Results: Two categories emerged in the results. The first was A respectful nurse, with the subcategories Emotional support, To be together and The patient is well taken care of. The second was To be involved as next of kin with the subcategories To be informed and Participation. Conclusion: Next of kin to patients in end-of-life care need a nurse who cares for them, enables them to be with the patient and participate in the patients’ care, guides and informs them in the end-of-life process and takes good care of the patient.

Background: Road traffic accidents are on the rise in low income countries and have a large socioeconomic impact on Uganda. In Uganda, the nurse-patient ratio is 50-100 patients per nurse which is higher than in Sweden, and the patients’ next-of-kin are involved to assist with nursing care. Victims of road traffic accidents demand a lot of nursing care but contextual limitations give patients different opportunities for recovery. A common nursing language, as NANDA and NIC, aim to make communication more efficient; ease work for the staff and make the care better for the patients. Setting: The study was conducted at Mulago Hospital in Kampala, Uganda. Method: Participant observation was used when observing the nursing care of 24 patients. Field notes were analyzed using manifest content analysis. Aim: The aim of this study was to identify the nursing panorama of patients with musculoskeletal injuries in their context. Result: The ratio between the ten most common diagnosis and interventions showed to be 222:59. The diagnostic span and the range of interventions varied according to if staff or next-of-kin performed the nursing of the patients. Conclusion: Using NANDA and NIC, revealed the next-of-kin in the study being responsible for nursing diagnoses and interventions.

Bakgrund: Palliativ vård bygger på ett förhållningsätt som innebär att öka livskvalitén för både patienten och dess närstående. Palliativ vård handlar om god symtom kontroll och lindring. Den palliativa vården i hemmet lägger stort ansvar på de närstående, inte bara när det kommer till kontrollera symtomen men att organisera vården för patienten 24 timmar/dygnet. Sjuksköterskan måste se patienten och närståendes livssituation för att ge bra stöd i hemmet. Syfte: Syftet med denna studie var att belysa närståendes erfarenheter av att vårda den sjuke palliativt i hemmet. Metod: Som metod valdes en litteraturbaserad studie. Datamaterialet bestod av nio kvalitativa vetenskapliga artiklar. Resultat: Tre kategorier identifierades såsom: Ny roll, behov av hjälp från kunniga och behålla det egna livet med sex underkategorier. Närståendes erfarenheter, att ha ett stort ansvar är svårt och krävande men även meningsfullt. Brist på stöd från sjukvården påverkar närståendes förmåga att vårda den sjuke. Slutsats: När närstående vårdar den sjuke i hemmet är tiden både tung och meningsfull. Det beror på vilket stöd och information de får från sjuksköterskorna samt om de själva får möjligheten att distansera sig till vårdandet för att behålla det egna livet.

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Purpose: To test whether a psycho-educational program affects mental wellbeing in persons treated for colorectal cancer and their next-of-kin. Design: A prospective, longitudinal, randomized controlled trial. Setting: Surgical clinic at a university hospital in Sweden. Sample: 105 colorectal cancer patients and 71 next-of-kin were allocated to a psycho­educational program or to standard care. Methods: Mental wellbeing was evaluated with the Mood Adjective Check List and The Hospital Anxiety and Depression Scale at baseline and at 1, 6, and 12 months. The program consisted of seven meetings, including lecture and time for reflection with other patients/next­of-kin. Main Research Variable: Overall mood, activity, calmness, pleasantness, anxiety, and depression. Findings: The psycho-educational program increased overall mood, calmness, and pleasantness among patients after one month but had no effect on activity, anxiety, or depression. The program had no effect on the overall mood, activity, calmness, pleasantness, anxiety, or depression among next-of-kin. Conclusion: The psycho-educational program had a short-term effect on overall patient mood, calmness, and pleasantness but not on next-of-kin. Implications for Nursing: A psycho-educational program including lecture and time for reflection can be used with a colorectal cancer patient population to improve some aspects of their mental wellbeing.

Bakgrund: Sjuksköterskor behöver möta närstående till personer som vårdas palliativt. Sjuksköterskan kan skapa meningsfulla relationer med närstående och använda denne som en resurs för patienten. Närståendestöd är en av hörnstenarna inom den palliativa vården. Sociala relationer är en av de 6 S:n som används vid personcentrerad palliativ vård, då närstående kan tillföra fler dimensioner till patientens livsberättelse. Syfte: Syftet med denna litteraturstudie var att beskriva sjuksköterskans erfarenheter av att möta närstående till patienter inom palliativ vård. Metod: Metoden var en litteraturöversikt där tolv vetenskapliga artiklar inkluderades. Artiklarna hämtades från databaserna CINAHL Complete och Pubmed och analyserades med hjälp av Fribergs analysmetod. Resultat: Två teman identifierades: yttre och inre förutsättningar för sjuksköterskan. Yttre förutsättningar för sjuksköterskan delades in subteman såsom tidens betydelse, vårdmiljöns inverkan och när närstående har en annan åsikt. I inre förutsättningar för sjuksköterskan framkom sjuksköterskans förmåga att involvera närstående, sjuksköterskans förmåga att utveckla sin kompetens i mötet med närstående, kommunikationens betydelse och förutsättningar att skapa teamarbete. Diskussion: Med de 6 S:n som teoretisk utgångspunkt har litteraturöversiktens resultat diskuterats utifrån bakgrund och annan relevant litteratur. Närstående behövs i vården kring patienten men det är inte alltid som närståendes vilja är densamma som patientens eller vårdgivarens. För att sjuksköterskan ska kunna använda närstående som en resurs krävs tydlig kommunikation och stöd från sjuksköterskan i arbetet mot ett gemensamt mål för palliativ vård. / Background: Nurses need to face next of kin to people who receive palliative care. The nurse can create meaningful relationships with the next of kin and can use them as a resource for the patient. Support for the next of kin is a cornerstone in palliative care. Social relations are one of the 6 S:s used for person-centered palliative care when next of kin can add more dimensions to the patient's life story. Aim: The purpose of this study was to describe nurses' experiences in meeting next of kin to patients in palliative care. Method: The method was a literature review where twelve scientific articles were included. Articles were taken from the databases CINAHL Complete and Pubmed and analyzed using analysis of Friberg. Results: Two themes were identified: external and internal conditions for the nurse. External conditions for the nurse divided into subthemes such as time significance, the care environment impact and when the next of kin has a different opinion. The internal conditions for the nurse came up as the nurse's ability to involve next of kin, nurses' ability to develop their skills in the meeting with next of kin, the importance of communication and the ability to create teamwork. Discussion: With the 6 S:s as a theoretical basis, this literature review has been discussed from the basis of the background and other relevant literature. Next of kin are needed in the health care around the patient but it is not a guarantee that the next of kin`s wishes is the same as the wishes of the patients or the caregivers. For the nurse to use next of kin as a resource it requires clear communication and support from the nurse in the work towards a common goal of palliative care.

Nära patienten i samband med hjärt- eller lungtransplantation finns ofta anhöriga. Anhöriga upplever påfrestningar och har ett kunskapsbehov i samband med transplantationen. Liksom patienten är anhöriga sårbara och det är av betydelse att undersöka anhörigas upplevelser, det kan medföra att anhöriga bättre förbereds för den påfrestning transplantationen innebär. Litteraturstudiens syfte var att undersöka upplevelsen av att vara anhörig i samband med hjärt- eller lungtransplantation. Studien genomfördes som en allmän litteraturstudie och analysen gjordes med stöd av hermeneutisk metod. Resultatet visar att anhörigas stöd till patienten var en akt av kärlek som medförde att anhöriga bland annat försakade vänner och förändrade det dagliga livet. Transplantationen innebar en väntan och mycket känslor för anhöriga, allt från glädje när samtalet om att det var dags för transplantation kom, till oro för att patientens tillstånd efter transplantationen kunde försämras igen. Anhöriga upplevde brist i tillgängligheten från vården gällande information, uppmärksamhet och stöd i sin roll. I litteraturen är omvårdnadsprocessen relaterat till anhörigas upplevelser i samband med hjärt- eller lungtransplantation bristande, därför är framtida forskning betydelsefull för att skapa ytterligare evidensbaserad kunskap till omvårdnadsprocessen om anhörigas upplevelser. / Next of kins are often close to patients in heart- or lung transplantation. In connection with transplantation next of kins experience strain and has a need for knowledge. Like patients next of kins are vulnerable and it is important to explore next of kins’ experiences, this to better prepare for the burden of transplantation. The aim of the study was to explore the experience of being a next of kin in connection with heart- or lung transplantation. The study was conducted as a general literature study and the analysis was guided by a hermeneutic method. The results show that next of kin’s support for the patient is an act of love resulting in sacrificed relationships with friends and changes in their daily lives. The transplantation generated waiting and a lot of feelings for next of kins, such as joy when the call came about transplant, and later on after the transplantation worries that the patient’s condition would worsen again. Furthermore, next of kins experienced lack of availability from the health care services regarding information, attention and support in their role. In the literature the nursing process regarding next of kins’ experiences in heart- or lung transplantation is inadequately described, therefore it is of importance that future research creates new evidence based knowledge.

Aim: The overall aim of the thesis was to illuminate the meanings of intensive care units’ patient rooms as a place of care for critically ill patients and their loved ones. Moreover, it was aimed to develop photovoice as a data collection method for research in ICU context. Methods and materials: Data has been collected using photovoice methodology in combination with research interviews for all three empirical studies. In total 37 people participated. Nine patients, fourteen loved ones and fourteen nurses from three ICU settings. Study I examined the perspective of loved ones, for this purpose a phenomenological hermeneutic method rooted in the philosophy of Ricoeur was chosen. Study II and III examined patients’ respectively nurses’ perspective. Both studies are phenomenologically orientated guided by a reflective lifeworld approach rooted in continental philosophy. Study IV is a theoretical paper focusing on employing photovoice as a data collection method in ICU context. Main findings: The tone and touch of caring is vital for how ICU patient room is materialized for patients. The interior design and furnishing has a great impact on the wellbeing of the loved ones and also the support they can offer the critically ill patient. One major finding is that the ICU patient room is a taken for granted place for health care providers and the impact of it upon caring, patients’ and loved ones wellbeing is not reflected over. It also seems unclear who is responsible for the environment of ICU once it has been built. The environment of ICU affects nurses’ ability to care for the patients and their family in a genuine way and to promote their wellbeing during a fragile time in life. Conclusions: There is an urgent need to translate research findings into clinical practice in order to improve the environment of ICU patient rooms. There is also need of further research and policies for transforming the hostile environment of the patient rooms to a healing environment more conductive to people’s recovering process. / <p>Akademisk avhandling som för avläggande av filosofie doktorsexamen vid Linnéuniversitetet försvaras vid offentlig disputation, 13 juni 2014, klockan 14.00 i sal Wicksell, Hus K, Växjö</p>

Nursing research has been performed during the last 20-30 years, about the next of kin’s vulnerability. Despite this, the health care system has had difficulties to integrate the next of kin in a way that gives support. The overall aim of the thesis was to describe and further explore the life situation of the next of kin to persons who are long-term ill, disabled, and/or older, and in need of care. Method: Multiple methods were used. Study I had a descriptive design, 44 next of kin of patients with multiple sclerosis were interviewed, latent content analysis was used for the analysis. Study II had a mixed method approach; the descriptive core study was analyzed with directed content analysis. The supplementary study with descriptive, correlative design was analyzed with descriptive and correlative statistics. Forty-four next of kin of patients with multiple sclerosis were interviewed; thereafter 37 of them answered a questionnaire about Quality of Life. Study III had a descriptive, explorative design. Twelve next of kin of older persons were interviewed with repeated informal conversational interviews, analyzed with latent content analysis. Study IV was cross-sectional with a descriptive, correlative design. Eighty-four next of kin of persons who were long-term ill, disabled, and/or older answered two questionnaires about Burden and Quality of Life that were analyzed with descriptive and correlative statistics. Results and Conclusions: Next of kin described a balance/imbalance in their relations to others and a high burden, but in general a good Quality of Life. Some next of kin also experienced chronic sorrow. Significant correlations were found between interpersonal relations and Quality of Life as a whole. Love and obligations were two anchor points on a continuum, describing the next of kin’s relationship to the ill/disabled person. The relationship with the health care personnel was described through cooperation and obligations. Good communication was seen as the key to balance the relationship with others. One possibility to achieve symmetrical communications is to adapt the Partnership Model, as a tool for creating good relationships. Honest and specific communication between the health care personnel, the next of kin, and the care receiver are necessary.

Aim: The overall aim of the thesis was to explore and describe the concepts of guilt and shame and gain a greater understanding of the next-of-kin’s experiences of guilt and shame in end-of-life care. Methods: Study I was a qualitative secondary analysis of 47 interviews with next-of-kin searching for experiences of guilt and shame. In study II a semantic concept analysis of the two concepts guilt and shame was performed. In studies III and IV a hermeneutic approach inspired by Gadamer was used to analyze next-of-kin’s experiences of guilt (Study III), and shame (Study IV) in end-of-life care. Main findings: The concept of guilt focus on behaviour and the concept of shame on the influence on the self.  The situation of being next-of-kin in end-of-life care involves a commitment to make the remaining time for the loved one as good as possible. When, for some reason, the commitment cannot be accomplished there is a risk that the next-of-kin experience guilt such as not having done enough, not having been together during important events, not having talked enough to each other, or not having done the right things. Aspects such as not having fulfilled a commitment, omission, and being the cause of can be present in these experiences. The guilt experience has a focus on what the next-of-kin has, or has not done. The experiences of shame are also linked to a perception that the remaining time for the loved one should be as good as possible. Shame can occur when the next-of-kin is involved and actually causes harm to the loved one as well as in situations that are beyond their control. Shame that the next-of-kin experience can also emanate from being put in situations by other people. Feelings of inferiority and powerlessness, second order shame, and family conflicts that are brought into the open are experiences of shame found in the studies as well as ignominy, humiliation, and disgrace. The shame experience has a focus on the next-of-kin’s self. Conclusion: The situation of being next-of-kin in end-of-life care is complex and demanding, something that health professionals should be aware of. Acknowledgement of experiences of guilt and shame can help the next-of-kin in their adaptation to the end-of-life situation as a whole and maybe also give useful tools to support next-of-kin during bereavement.