Bakgrund: Cancer är idag en vanlig sjukdom och vid sidan av en person med cancer finns närstående som kan riskera att glömmas bort. Att vara närstående kan vara en påfrestande upplevelse och riskerar att leda till ohälsa. Närstående bör involveras i vården och deras välmående bör tas hänsyn till. Syfte: Studiens syfte var att beskriva de närståendes upplevelse av stöd som fenomen, när en person i deras närhet drabbats av cancer. Metod: En deduktiv litteraturöversikt med KASAM som teoretisk utgångspunkt. För att besvara syftet användes kvalitativa artiklar. Sökningar i CINAHL gjordes och resulterade i 16 resultatartiklar. Resultat: Närstående upplevde den nya livssituationen som ofattbar, information kring sjukdom och behandlingsmöjligheter från vårdpersonal gjorde situationen mer begriplig. De närstående använde olika strategier för att anpassa sig till situationen och fann stöd i vänner och familj. Att närvara vid behandlingar ledde till delaktighet i vården vilket gjorde att de närstående upplevde ett syfte. Slutsats: Genom stöd kan en känsla av sammanhang upplevas trots närvaro av sjukdom. Att som närstående bli sedd och lyssnad till underlättar för att hantera den nya situationen och att finnas där för den sjuka personen. / Background: Cancer is a common disease and is often associated with death, although the treatments are getting better and the number of survivals is growing. In the shadow of a person with cancer there will always be loved ones who should not be forgotten.    Aim: The aim of the study was to describe the next of kin’s experience of support as a phenomenon, when a loved one is affected with cancer. Method: A deductive literature review with sixteen qualitative articles was made, using Sense of Coherence [SOC] as a theoretical approach. Searches for result articles was made in CINAHL. Result: Relatives experienced the new life situation as unimaginable, information from healthcare staff about the disease and possibilities of treatment made the situation understandable. Relatives used different strategies to adjust to the new situation and found friends and family to be a source of support. Being present during treatment gave the relative a sense of purpose. Conclusion: With support a sense of coherence can appear even in the presence of disease. To be seen and listened to makes it easier for the next of kin to handle the new situation and be able to be there for the ill person.

Bakgrund: Nuförtiden har det blivit mer vanligt att patienter som lider av obotliga sjukdomar vill vårdas och dö i hemmet vid palliativt skede. Trots insatser från hälso- och sjukvården spelar närstående ofta en avgörande roll i vården. Närstående tar ofta på sig rollen som vårdare för att uppfylla den sjukes önskan. Att engagera sig i vårdandet av en anhörig lägger ett stort ansvar på närstående vilken kan påverka de närståendes fysiska och psykiska hälsa. Syfte: Syftet var att beskriva närståendes upplevelse av att vårda sin anhöriga i hemmet vid palliativt skede. Metod: Metoden för studien var en litteraturöversikt som grundade på tio vetenskapliga kvalitativa artiklar. Vid sökning användes tre databaser; CINAHL Complete, PubMed och PsycINFO. Artiklarna kvalitetsgranskades och analyserades enligt Friberg (2017). Resultat: I resultatet framkom tre huvudkategorier och nio subkategorier. De första huvudkategorierna var positiv upplevelse av att vårda anhöriga med tre subkategorier; förbättrade relationer, att känna sig delaktighet i sin vårdande roll och att uppfylla önskan. De andra huvudkategorierna var negativ upplevelse av att vårda anhöriga med subkategorier; vårdbördan och ansvar, isolering och ensamhet, att vara osäker och rädslan och ångest. De tredje huvudkategorierna var närståendes upplevelse av hälso – och sjukvården med två subkategorier; otillfredsställelse - och tillfredsställelse med hälso-och sjukvård. Diskussion: Resultatet diskuteras utifrån Meleis transitionsteori, områdets utgångspunkt som beskrivs i litteraturöversiktens bakgrund och annan forskning. Utgångspunkten tas framförallt ifrån Meleis transitionsteori som var relaterad till närståendes upplevelse av rollövergångar. / Background: Nowadays, it has become more common for patients suffering from incurable diseases to be cared for and die at home at palliative stages. Despite efforts from the health and medical care, next-of-kin often play a crucial role in the care. Next-of-kin often take on the role of carer to fulfil the sick person's desire. Engaging in caring for a family member adds great responsibility to the next-of-kin which can affect their physical and mental health. Aim: The purpose was to describe the next-of-kin experiences of caring for their relatives in the home at the palliative stage. Method: The method of the study was a literature review based on ten scientific qualitative articles. When searching, three databases were used; CINAHL Complete, PubMed and PsycINFO. The articles were quality-reviewed and analysed according to Friberg (2017). Results: The result showed three main categories and nine subcategories. The first major categories were positive experiences of caring for relatives with three subcategories; improved relationships, feeling involved in their caring role and fulfilling desire. The other main categories were negative experiences of caring relatives with subcategories; care burden and responsibility, isolation and loneliness, being insecure and fear and anxiety. The third main categories were next-of-kin experiences of health professionals with two subcategories; satisfaction and dissatisfaction. Discussion: The result is discussed based on Melei's transition theory, the background of the literature review and other research. The starting point is mainly taken from Melei's transition theory, which was related to the next-of-kin experience of role transfers.

<p>The welfare of the elderly population is one of the most important goals of the public health services. At macro level the Swedish National Board of Health and Welfare state that the premier goal is for elderly people to have dignified and comfortable lives. They should have a life with a sense of value and feel confident. These ethical values which are expressed on macro level or as normative ethics are expected to prevail at micro level. In our study the micro level is the caring encounter between the elderly patient, next of kin and nurses. Ethical values and morals are important aspects that influence the quality of care, videlicet in empiric ethics.</p><p>The aim of study (I) was to identify and describe the ethical values experienced by the older person in the daily interaction with nurses in a ward for older people during caring encounters. In study (II) the aim was to identify and describe the governing ethical values that next of kin experience in interaction with nurses who care for elderly patients at a geriatric clinic. Study (I) which was an empirical observational study included follow-up interviews. Twenty-two older people participated voluntarily. In study (II) interviews with fourteen next of kin were conducted. In both studies Constant comparative analysis, the core foundation of grounded theory was used.</p><p>Five categories; Being addressed, receiving respect, desiring to participate, increasing self-determination and gaining self-confidence formed the basis for the core category in study (I): Approaching. Approaching concerns the way people become closer to each other in a physical space .It also includes how people become closer to each other in a dialogue, which involves verbal or bodily communication. Approaching indicates the ethical values that guide nurses in their caring encounters with older people. This ethical value is noted by the older person and has an individual value, as well as leading to improved quality of their care. The older person will be confident and satisfied with the caring encounter if the desired components in the nurse’s approaching are exhibited.</p><p>Four categories were identified in study (II): Receiving, showing respect, facilitating participation and showing professionalism. These categories formed the basis of the core category: “Being amenable”, a concept identified in the next of kin’s description of the ethical values that they and the elderly patients perceive in the caring encounter. Being amenable means that the nurses are guided by ethical values; taking into account the elderly patient and next of kin. Nurses who focus on elderly patients’ well-being as a final principle will affect next of kin and their experience of this fundamental situation.</p>

<p><strong>Bakgrund:</strong> Att få kunna vårdas och dö hemma i en familjär och välkänd miljö innebär för de allra flesta en känsla av trygghet. För många anhöriga är det självklart att leva nära den döende och ta ansvar för omvårdnaden. Ur ett systemteoretiskt perspektiv kan familjen liknas vid en mobil, vid obalans påverkas alla familjemedlemmar. <strong>Syftet</strong> med studien var att belysa patientens, anhörigas och sjuksköterskors erfarenheter av palliativ vård i hemmet för att få en ökad förståelse för sjuksköterskors roll i detta sammanhang. <strong>Metod:</strong> Litteraturstudie där tidigare forskning i ämnet undersökts och sammanställts. Studien består av tolv artiklar från olika vetenskapliga tidskrifter. <strong>Resultat:</strong> Att få vårdas och dö hemma hade stor betydelse för patientens livskvalitet. Sjuksköterskans stöd och engagemang kan i många fall ha avgörande betydelse för om patienten avlider i hemmet, på hospice eller på sjukhus. Viljan för anhöriga att vårda kunde vara större än förmågan att orka med. Sjuksköterskans uppgift var att försöka läsa av och möta patientens och anhörigas behov. Att skapa en god relation till familjen visade sig vara av största vikt inom palliativ hemsjukvård. <strong>Slutsats: </strong>En god kommunikation med familjens medlemmar skapar förutsättningar för en god relation. Det är en svår men viktig balansgång för sjuksköterskan att kunna identifiera och tillfredsställa behoven hos varje enskild familj.</p> / <p>Background: To be cared for and to die at home in a familiar and well-known environment implicates for the vast majority a sense of security. For many families, it is obvious to live close to the dying and take responsibility for nursing care. From a systems theory perspective, the family can be likened to a mobile, the imbalance affects every member of the family. The purpose of this study was to illuminate the patient's, next of kin's and nurses' experiences of palliative care at home to get a better understanding of nurses' role in this context. Method: Literature study in which previous research on this subject were examined and compiled. The study consists of twelve articles from various scientific journals. Results: to be cared for and die at home had a significant impact on patient quality of life. Nurse's support and commitment can often be crucial if the patient dies at home, in hospice or in hospital. The willingness of relatives to care could be greater than the ability to cope with. Nurse's task was to try to read and respond to patients 'and next of kin's needs. Building a good relationship with the family proved to be of paramount importance in palliative home care. Conclusion: A good communication with family members creates the conditions for a good relationship. It is a difficult but important balance for the nurse to identify and meet the needs of each family.</p>

<p>ABSTRACT</p><p>The purpose of this thesis has been to increase the knowledge about the life situation for next of kin who are caring for the elderly and mentally disabled. Also, the impact of “supportive actions” on the quality of life for the next of kin has been assessed. This study tried to answer the following questions:</p><p> How do next of kin perceive their every day life.</p><p> Do supportive actions lead to a better situation in your every day life.</p><p> Do supportive actions raise the quality of life for next of kin</p><p>To answer the questions above a qualitative method was used. Individual interviews were chosen to get a deeper understanding of how the target group was experiencing their life situation. The participants in our study were six women, three were home nursing their husbands and the other three were caring for their parents.</p><p>Through the interviews it was concluded that their life situation was trying and strenuous before the “supportive actions” begun. Stress, anxiety and confinement were common place. In the study it was identified that the “supportive actions” had a positive influence on the life situation and as a consequence the next of kin had a more manageable everyday life after the actions were implemented. The support created the necessary conditions for an increased quality of.</p> / <p>SAMMANFATTNING</p><p>Syftet med denna c-uppsats var att få en ökad förståelse för anhörigas vardag som ger omsorg/vård till äldre och långtidssjuka samt om de stödinsatser som ges har någon betydelse för deras livskvalité. De frågeställningar som vi utgick ifrån var:</p><p> Hur uppfattar anhöriga sin vardag.</p><p> Leder stödinsatserna till en förbättrad livssituation.</p><p> Förbättrar stödinsatserna livskvaliteten hos anhöriga.</p><p>Vi använde en kvalitativ metod för att besvara syftet och vi valde personliga intervjuer för att få en djupare förståelse hur informanterna upplevde sin livssituation. Deltagarna i vår studie var sex kvinnor, varav tre av dem var anhörigvårdare till sin make och de övriga var omsorgsgivare till sina föräldrar.</p><p>Genom intervjuerna med de anhöriga har vi kommit fram till att i livssituationen innan de fick stödinsatserna, så upplevde anhörigvårdarna och omsorgsgivarna att situationen var påfrestande och ansträngd. Många upplevde att det skapades stress, oro och en bundenhet i vardagen. Vi kunde i vår studie se att stödinsatserna har påverkat livssituation i rätt riktning och att många i dag upplevde att deras vardag har blivit mer hanterbar och att stödet har förbättrad livskvalitén.</p>

Everyday life can be complex when next of kin of haemodialysis patients are preoccupied with taking care of the patient and his/her health, which implies the difficulties and requirements needed. The general aim of this thesis was to explore and describe everyday life among next of kin of haemodialysis patients with focus on the life situation, health, time and professional support. Two perspectives of the thesis was applied: a holistic perspective on the everyday life of next of haemodialysis patient and a social perspective with focus on human communication and understanding of next of kin’s experience of everyday life. A qualitative descriptive and explorative design, comprising a phenomenographic and content analysis was used in Studies I-IV. The data collected in the studies consisted of interviews with next of kin to haemodialysis patient and analysis of professional support for next of kin to chronic haemodialysis patients in nursing documentation from two hospitals in Sweden. The experience of time in everyday life among next of kin of haemodialysis patients demonstrated that time for them is minimised and life space contracted. Next of kin experienced ambivalence towards their own health, especially in cases of patients’ spouses When next of kin of haemodialysis patient’s became involved in the patients’ care, they experienced arduousness in relation to their own health as well as less uninterrupted time for themselves in everyday life, and their life situation was characterised by confinement and social isolation. They were aware of the prognosis of renal disease and the fact that haemodialysis is a life-sustaining treatment, which forced them to live for the moment. The everyday life among the next of kin changed when the family became involved in the care, which in turn lead to a changed life situation and restrictions in everyday life. Lack of knowledge in nursing documentation of professional support revealed necessity of the readiness of next of kin. It is therefore important to be familiar with this in the nursing process, especially when the patient and their next of kin need support and attention in everyday life. Original papers not included. / <p>Linköping University Medical Dissertation, 926, I. Ziegert K. &amp; Fridlund B. Conceptions of life situation among next of kin of haemodialysis patients. Journal of Nursing Management 2001; (9) 231-239. doi:10.1046/j.1365-2834.2001.00233.x, II. Ziegert K., Fridlund B. &amp; Lidell E. Health in everyday life among spouses of patients on haemodialysis; a content analysis. Scandinavian Journal of Caring Sciences, Volume 20, Number 2, June 2006, pp. 223-228(6). DOI: 10.1111/j.1471-6712.2006.00400.x, III. Ziegert K., Fridlund B. &amp; Lidell E. Time in everyday life as experienced by next of kin of haemodialysis patients (Submitted for publication)., IV. Ziegert K., Fridlund B. &amp; Lidell E. Professional support for next of kin of patients receiving chronic haemodialysis treatment. A content analysis study of nursing documentation. Journal of Clinical Nursing, Volume 16, Number 2, February 2007, pp. 353-361(9). DOI: 10.1111/j.1365-2702.2006.01597.x,</p>

The overall aim of this thesis was to describe quality of care from different perspectives in the psychiatric setting, to develop an instrument for measuring quality of care from the in-patient perspective and to use this instrument empirically. A qualitative descriptive design involving a phenomenographic analysis was used in Studies I, III and IV, and a descriptive and comparative design with statistical analysis in Study II. In Study I, 20 patients were interviewed. The results showed that quality of care was perceived as a positive, normative concept namely as good quality of care. Five descriptive categories emerged: the patient’s Dignity is respected; the patient’s sense of Security with regard to care; the patient’s Participation in care; the patient’s Recovery; and the patient’s care Environment. In addition, two conceptions that had not explicitly emerged in previous studies on quality of care were identified: Being helped to reduce the shame and Being looked upon as like anyone else. In Study II a definition of quality of care from a patient perspective was formulated on the basis of the results in Study I. A two-part instrument the Quality in Psychiatric Care (QPC) was developed for measuring the patients’ expectations regarding quality of care (QPC-1) and their subsequent experience of it (QPC-2). One hundred and sixteen patients answered both parts of the instrument. Overall, the quality of care was rated high in both parts. However, experienced quality of care was significantly lower than the patient’s expectations in all the dimensions of the instrument: Total dimension, Dignity, Security, Participation, Recovery and Environment. Patients who perceived that the time of discharge was consistent with the stage of their illness experienced significantly higher Recovery; patients with good psychiatric health also experienced this, but had in addition significantly higher levels of Participation. This new instrument exhibited too high Cronbach’s alpha values (QPC-1 0.87–0.98, QPC-2 0.85–0.98), which means the instrument needs to be further tested in order to improve its psychometric properties. Twelve next of kin were interviewed in Study III. The next of kin described quality of care mainly from their own perspective, but also to a large extent from the patient’s perspective as well. They described it in both positive and negative terms. Five descriptive categories resulted: Dignity, Security, Participation, Recovery and Health-promoting surroundings. Good relations and communication between staff, patients and next of kin emerged as the central factors regarding the quality of care. The next of kin asked for information about mental illnesses and wanted to co-operate and participate in the patient’s care. They avoided telling others about their family member’s psychiatric illness because of a feeling of shame and guilt. In Study IV, 20 care staff and care associates were interviewed. They described quality of care both from the patient’s perspective and from a professional perspective. They perceived the concept as a positive one and as being of great importance for the patient’s health and life situation. Four descriptive categories resulted: the patient’s Dignity is respected; the patient’s Participation in the care; the patient’s Recovery; and the patient’s care Environment plays an important role. The main contribution of this thesis with regard to the concept of quality of care in the psychiatric setting is its emphasis on the significance of the different perspectives described above, as such knowledge is vital when planning and implementing and evaluating quality of psychiatric care. In addition, the descriptive categories that emerged in this thesis clearly highlight the importance of interpersonal relationships in the care situation. The new instrument (QPC) needs psychometric testing before it routinely can be used as a self-rating instrument for the purpose of improving psychiatric inpatient care and help guide the proper allocation of care resources.

The use of advanced medical technology at home has increased in most industrialized countries. The overall aim of this thesis was to develop knowledge of self-care and transition and issues that influence daily life and health among persons using advanced medical technology at home. Three qualitative studies were performed to describe the structure of self-care (I) and elucidate meanings of health-illness transition experiences among persons using long-term oxygen, or a ventila-tor, or performing blood or peritoneal dialysis (II), and to gain a deeper understanding of the meaning of living with an adult family member in this context (III). Ten interviews with adult patients (I-II) and ten with adult next of kin (III) in this context were performed and analysed with descriptive phenome-nological (I), phenomenological hermeneutical (II) and hermeneutical (III) methods. A quantitative, descriptive, comparative, cross-sectional design was used to describe and find factors that influence self-care agency and perceived health in a larger group of persons (180 patients) using the enumerated types of advanced medical technology at home (IV). In the results, (I) self-care among persons using long-term oxygen, a ventilator, or equipment for blood or peritoneal dialysis at home was described at a generic level, independent of the specific type of technology used. The general description of self-care in this context involved prerequisites for, activities for and consequences of self-care; (II) the health-illness transition among adult persons in this context was interpreted as contentment at being part of the active and conscious process towards transcending into a new state of living, in which the individual and the technology were in tune. The successful and healthy transition experience was characterized by human growth and becoming; (III) living with a family member who is using advanced medical technology at home was interpreted as meaning rhythmical patterns of being closely connected to but also separated from him or her, and of sorrow versus reconciliation. Dependence on others was reflected in a need for support from the healthcare professionals and significant others; (IV) health-related and technology-related variables in daily life were rated as satisfactory to quite a high extent, but participants using long-term oxygen perceived their health as significantly lower compared to the other technology groups. Further, a significant difference in sense of coherence was found between users of long-term oxygen and peri-toneal dialysis. Factors that contributed to self-care agency and sense of coherence were found. In conclusion, self-care in a high-tech home context means more than simply mastering the technology. With the goal of maintaining an active, social life, the health-illness transition involves a learning process of accepting and integrating the technology into daily life. With knowledge and support, patients and next of kin are able to assume substantial responsibility for self-care/dependent-care. Daily life seems to be manageable for patients using this kind of technology at home.

ABSTRACT The purpose of this thesis has been to increase the knowledge about the life situation for next of kin who are caring for the elderly and mentally disabled. Also, the impact of “supportive actions” on the quality of life for the next of kin has been assessed. This study tried to answer the following questions:  How do next of kin perceive their every day life.  Do supportive actions lead to a better situation in your every day life.  Do supportive actions raise the quality of life for next of kin To answer the questions above a qualitative method was used. Individual interviews were chosen to get a deeper understanding of how the target group was experiencing their life situation. The participants in our study were six women, three were home nursing their husbands and the other three were caring for their parents. Through the interviews it was concluded that their life situation was trying and strenuous before the “supportive actions” begun. Stress, anxiety and confinement were common place. In the study it was identified that the “supportive actions” had a positive influence on the life situation and as a consequence the next of kin had a more manageable everyday life after the actions were implemented. The support created the necessary conditions for an increased quality of. / SAMMANFATTNING Syftet med denna c-uppsats var att få en ökad förståelse för anhörigas vardag som ger omsorg/vård till äldre och långtidssjuka samt om de stödinsatser som ges har någon betydelse för deras livskvalité. De frågeställningar som vi utgick ifrån var:  Hur uppfattar anhöriga sin vardag.  Leder stödinsatserna till en förbättrad livssituation.  Förbättrar stödinsatserna livskvaliteten hos anhöriga. Vi använde en kvalitativ metod för att besvara syftet och vi valde personliga intervjuer för att få en djupare förståelse hur informanterna upplevde sin livssituation. Deltagarna i vår studie var sex kvinnor, varav tre av dem var anhörigvårdare till sin make och de övriga var omsorgsgivare till sina föräldrar. Genom intervjuerna med de anhöriga har vi kommit fram till att i livssituationen innan de fick stödinsatserna, så upplevde anhörigvårdarna och omsorgsgivarna att situationen var påfrestande och ansträngd. Många upplevde att det skapades stress, oro och en bundenhet i vardagen. Vi kunde i vår studie se att stödinsatserna har påverkat livssituation i rätt riktning och att många i dag upplevde att deras vardag har blivit mer hanterbar och att stödet har förbättrad livskvalitén.

Older people should have a life with a sense of value and should feel confident. These ethical values, which are expressed in normative ethics, are expected to prevail in empirical ethics. Central components of nursing are the ethical issues of autonomy, beneficence, non-maleficence and the principles of justice. The general aim of this thesis is to identify and describe the ethical values that are apparent in the caring encounter and their influence on the people involved. This is done from the perspective of the older person in study (I), next of kin in study (II) and nurses in study (III). In study (IV) the aim was to synthesize the concepts from empirical studies (I- III) and analyze, compare and interrelate them with normative ethics. Studies (I, III) were empirical observational studies including follow-up interviews. Twenty-two older people participated voluntarily in study (I), and in study (III) 20 nurses participated voluntarily. In study (II) fourteen next of kin were interviewed. In studies (I- III) constant comparative analysis, the core foundation of grounded theory, was used. Five concepts were used in the analysis in study (IV); three from the grounded theory studies (I- III) and two from the theoretical framework on normative ethics i.e. the ICN code and SFS law. Five categories; being addressed, receiving respect, desiring to participate, increasing self-determination and gaining self-confidence formed the basis for the core category ‚Approaching‛ in study (I). ‘Approaching’ indicates the ethical values that guide nurses in their caring encounters with older people. These ethical values are noted by the older people and are greatly appreciated by them, and also lead to improved quality of care. Four categories were identified in study (II): Receiving, showing respect, facilitating participation and showing professionalism. These categories formed the basis of the core category ‚Being amenable‛, a concept identified in the next of kin’s description of the ethical values that they and the older patients perceive in the caring encounter. In study (III), three categories were identified: showing consideration, connecting, and caring for. These categories formed the basis of the core category ‚Corroborating‛. Corroborating deals with support and interaction. Empirical ethics and normative ethics are intertwined, according to the findings of this study (IV). Normative ethics influence the nurse’s practical performance and could have a greater influence in supporting nurses as professionals. Criteria of good ethical care according to this thesis are: showing respect, invitation to participation, allowing self-determination, and providing safe and secure care. These criteria are elements of the concept of being professional. Professionalism of nurses is shown by: the approach nurses adapt to the performance of their duties, and their competence and knowledge, but also how they apply laws and professional codes