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

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. 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. 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. 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.

No description available.

Bakgrund: Antalet personer som vårdas palliativt i hemmet har ökat det senaste decennierna. Den palliativa vården innebär en helhetsvård av den sjuke i livets slutskede. Den skall samtidigt vara ett stöd för de närstående som har en betydelsefull roll för den sjuke. Syfte: Syftet med denna studie är att belysa upplevelser av att vårda en närstående med cancer sjukdom. Metod: En innehållsanalys genomfördes i denna litteraturstudie enligt Friberg (2006). Artikelsökningarna gjordes via Cinahl och PubMed. I resultatet användes sammanlagt elva kvalitativa vetenskapliga studier som granskats. Sex utav studierna var från Sverige och övriga var från Australien, Italien, Kanada, Hong Kong och Nederländerna. Resultat: Resultatet utmynnade i tre huvudkategorier, närståendes upplevelser av en ny roll, närståendes upplevelser i samband med vårdandet och närståendes upplevelser av vårdteamet. Varje kategori består av underkategorier. Närståendes upplevelser av en ny roll som beskriver om förändringar och utmanade situationer där närstående genomgick en rollförändring från att vara närstående till att  vara vårdare. De ställde höga krav på sig själva när det gällde omvårdnadsansvaret av den sjuke. Likaså trodde de att människorna i deras omgivning hade samma krav på dem. Upplevelser av att vårda en närstående i hemmiljö visade att det var både den sjukes och närståendes önskan om att den sjuke skulle vårdas hemma. Närstående begränsade sina aktiviteter för att vårda den sjuke vilket hade inverkan på deras liv. Detta kunde leda till att närstående drabbades av fysiska och psykiska belastningar på grund av de påfrestningarna de upplevde när den sjuke blev sämre eller de påfrestningarna som förekom i relation till de professionella vårdarna. Närståendes upplevelser av vården tar upp att närstående upplevde att de ville vara mer delaktiga i omvårdnaden av den sjuke och behöver information samt bättre kommunikation från de professionella vårdarna. Diskussion: Övergångsprocessen som närstående går igenom när de vårdar den sjuke i livets slutskede kunde ses som en utmaning för de. Trots att det kunde påverka deras liv negativt eftersom närstående ville ge den sjuke en god omvårdnad men upplevde att de inte alltid lyckades med detta. För att underlätta närståendes övergångsprocess är det viktigt att sjuksköterskan får dem att känna sig delaktiga i omvårdnaden genom att etablera en bra relation med närstående och ge dem kontinuerlig individuell anpassad information.

Background: Since the end of the 1990`s the self-harm among adolescents have increased. Research is needed on how to improve the ability to care for these patients. That is why it is important to investigate how patients who self-harm and the next of kin are encountered by the caregivers. Aim: The aim of this study was to illuminate the experiences of encounters with caregivers at self-harm. Method: The study was based on narratives, which in this case means analysis of autobiographies. Five autobiographies were analyzed in accordance with a description by Dahlborg-Lyckhage. Four of these were written by self-harmers and one by a next of kin. Results: Three themes and twelve subthemes emerged which describe both negative and positive experiences of encounters with caregivers. The themes were resignation, impotence and consideration. Negative attitudes and unprofessional manners were often experienced by both the self-harmers and the next of kin. This led to experiences of disappointment, disrespect and powerlessness. When the caregivers confirmed and displayed understanding, the self-harmers and next of kin experienced consideration in the encounter. Conclusion: As a caregiver it is very important to keep in mind that all patients and their next of kin are individuals. The caregivers need to be professional, display understanding and support. More research increase knowledge and understanding and results hopefully in caring encounters. Keywords: adolescents, autobiography, next of kin, nursing staff, self-injury.

Bakgrund: 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. Syftet 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. Metod: Litteraturstudie där tidigare forskning i ämnet undersökts och sammanställts. Studien består av tolv artiklar från olika vetenskapliga tidskrifter. Resultat: 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. Slutsats: 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. / 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.

Sammanfattning I denna studie undersöker jag vilken syn biståndshandläggarna och enhetscheferna har på avlönad anhörigvård och hur denna anhöriganställning påverkar situationen för de anhöriga. Jag väljer i min studie att fokusera på konsekvenser av anhöriganställning för en person som vårdar sin anhörig och som ingår i begreppet invandrare. Jag har använt mig av en kvalitativ studie och har intervjuat fem myndighetspersoner i Uppsala. I studien reflekterar och analyserar jag myndighetspersonernas åsikter med utgångspunkt i det teoretiska perspektivet KASAM – Känsla Av SAMmanhang och Social utbytesteori. Resultaten visar på en utbredd negativ syn på anhöriganställning hos myndighetspersoner, detta grundar sig på deras mångåriga erfarenhet av anhöriganställning och de problem som anhöriga möter i dagligt arbete som till exempel tunga lyft, bundenhet, yrkets låga status, men mitt resultat visar också på den stora brist av information kring anhöriganställning som råder i Uppsala. Det framkommer även positiva sidor av anhöriganställning som till exempel lön, utökad social kontakt och utbildning. I studien efterfrågas behov av utveckling av anhöriganställning och att detta är nödvändigt för att få mer av de positiva effekterna inom yrket. / Abstract This study examines the vision I have on assisting managers and heads of paid careers and how paid dependent care within the family affects the situation of the relatives. In my study I choose to focus on the effects of paid dependent care within the family for a person who cherishes his relative and who is included in the concept of immigrants. I have used a qualitative study and interviewed five magistrates in Uppsala. In the study, I reflect and analyze public opinions on the basis of the theoretical perspective SOC (Sense of Coherence) and Social Exchange theory. The results point to a widespread negative perception of family based dependent care with government officials, this is based on their experience of family based dependent care and the problems families encounter in daily work such as heavy lifting, obligations, the low status, but my results also show the considerable lack of information surrounding the family based dependent care obtained in Uppsala. Positive sides of family based dependent care are also found in my study, for example, pay, enhanced social contact, and education. The study needs for the require development of dependent care within the family and that this is necessary in order to get more of the positive effects within the profession.

Syftet med studien var att jämföra skattad hanteringsförmåga och hälsorelateradlivskvalitet hos närstående till personer med kronisk hjärtsvikt och stroke. Ett annat syfte var också att studera om samband fanns mellan hanteringsförmågaoch hälsorelaterad livskvalitet.  Metod: En komparativ och korrelativdesign med kvantitativ ansats användes. För att mäta hanteringsförmåga ochhälsorelaterad livskvalitet användes Jalowiec Coping Scale (JCS) och Shortform- 36 (SF- 36). Urvalsgruppen för studien var närstående till patienter med kronisk hjärtsvikt och stroke (n = 46). Resultatet visade att båda närstående grupperna använde mer optimistisk-, självtillit och konfrontativ stil. Närstående till patienter med stroke skattar sitt psykiska välbefinnande högre än närstående till patienter med kronisk hjärtsvikt(p=0,024). Det framkom flera låga och moderata negativa statistiska signifikanta samband mellan hälsorelaterad livskvalitet och hanteringsförmåga. De psykiska skalorna (SF-36) hade fler statistiska samband med coping stilar(JCS) än de fysiska skalorna. Konklusionen visade att närstående till patienter med kronisk hjärtsvikt skattar sin hälsorelaterade livskvalitet lägre på den psykiska välbefinnande än närstående till patienter med stroke.  Generellt var att lägre användning av copingstilar hade mer samband med högre skattad hälsorelaterad livskvalitet. / The aims of the study were to compare handling ability and health-related quality of life in next of kin to patients with chronic heart failure and stroke, as well as study correlations between handling ability and health-related quality of life. Method: A comparative and correlative design with quantitative approach was used. To measure handling ability and health-related quality Jalowiec Coping Scale (JCS) and Short Form-36 (SF-36) were used. The study group was next of kin to patients with chronic heart failure and stroke (n = 46). The results showed that both groups use most optimistic, self- reliant and confrontative coping styles. Next of kin to patients with stroke estimated mental health significantly higher than next of kin to patients with chronic heart failure (p = 0.024). There were several significant negative low-and moderate correlations between health-related quality of life and handling ability. In SF-36, the mental scales were more significantly associated with coping strategies (JCS) than the physical scales. Conclusions: Next of kin to patients with chronic heart failure rated health-related quality of life lower in the scale mental health than next of patients with stroke. Lower use of coping styles were more associated with higher health- related quality of life. / Att leva med långvarig ohälsa- hanteringsförmåga/resurser och upplevd livskvalitet