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.

<p>Psykisk ohälsa är ett samhällsproblem som kräver mer uppmärksamhet från sjukvårdens sida. En kronisk sjukdom drabbar både patienter och deras livskamrater och präglas av olika förluster som förändrar livet. Förlusterna skapar en klyfta mellan det liv patienter och livskamrater lever och de liv de egentligen vill leva. Det är i denna klyfta som den kroniska sorgen skapas. Kronisk sorg skiljer sig från vanlig sorg då den återkommer i perioder och växlar i intensitet. Syftet med studien var att beskriva upplevelsen av kronisk sorg hos patienter och livskamrater i samband med en kronisk sjukdom. Studien är genomförd som en litteraturstudie där 15 vetenskapliga artiklar samlades in och granskades. Resultatet visar att patienter och livskamrater upplever olika typer förluster, både fysiska, sociala och psykiska. Dessa förluster ligger till grund för upplevelsen av kronisk sorg. Genom att få kunskap om patienter och livskamraters upplevelse av kronisk sorg i samband med kronisk sjukdom kan sjuksköterskan få förståelse för dessa patienter och utifrån det hjälpa dem att hantera sorgen. Kronisk sorg är ett relativt nytt begrepp inom sjukvården och det krävs därför mer forskning för att öka kunskapen om begreppet.</p> / <p>Mental health is a problem in society and it requires more attention from the healthcare side. A chronic disease means that both patients and spouses undergo different periods of losses that change their lives in different ways. These losses create a gap between the patients and spouse’s ongoing lives and the life they really want to live. It is in this gap that the chronic sorrow is created. Chronic sorrow differs from normal grief when it recurs in periods and switches in intensity. The aim of this study was to describe the experience of chronic sorrow in patients and spouses related to a chronic disease. The study was conducted as a literature review where 15 research articles were collected and examined. The results show that patients and spouses experience different types of losses, physical, social and psychological. These losses create their chronic sorrow. By gaining knowledge of patients and spouses experiences of chronic sorrow the nurse can obtain an understanding of their situations and based on that help they cope with grief. Chronic sorrow is a relatively new concept in healthcare and therefore more research is required to increase understanding of the concept. <strong></strong></p>

Psykisk ohälsa är ett samhällsproblem som kräver mer uppmärksamhet från sjukvårdens sida. En kronisk sjukdom drabbar både patienter och deras livskamrater och präglas av olika förluster som förändrar livet. Förlusterna skapar en klyfta mellan det liv patienter och livskamrater lever och de liv de egentligen vill leva. Det är i denna klyfta som den kroniska sorgen skapas. Kronisk sorg skiljer sig från vanlig sorg då den återkommer i perioder och växlar i intensitet. Syftet med studien var att beskriva upplevelsen av kronisk sorg hos patienter och livskamrater i samband med en kronisk sjukdom. Studien är genomförd som en litteraturstudie där 15 vetenskapliga artiklar samlades in och granskades. Resultatet visar att patienter och livskamrater upplever olika typer förluster, både fysiska, sociala och psykiska. Dessa förluster ligger till grund för upplevelsen av kronisk sorg. Genom att få kunskap om patienter och livskamraters upplevelse av kronisk sorg i samband med kronisk sjukdom kan sjuksköterskan få förståelse för dessa patienter och utifrån det hjälpa dem att hantera sorgen. Kronisk sorg är ett relativt nytt begrepp inom sjukvården och det krävs därför mer forskning för att öka kunskapen om begreppet. / Mental health is a problem in society and it requires more attention from the healthcare side. A chronic disease means that both patients and spouses undergo different periods of losses that change their lives in different ways. These losses create a gap between the patients and spouse’s ongoing lives and the life they really want to live. It is in this gap that the chronic sorrow is created. Chronic sorrow differs from normal grief when it recurs in periods and switches in intensity. The aim of this study was to describe the experience of chronic sorrow in patients and spouses related to a chronic disease. The study was conducted as a literature review where 15 research articles were collected and examined. The results show that patients and spouses experience different types of losses, physical, social and psychological. These losses create their chronic sorrow. By gaining knowledge of patients and spouses experiences of chronic sorrow the nurse can obtain an understanding of their situations and based on that help they cope with grief. Chronic sorrow is a relatively new concept in healthcare and therefore more research is required to increase understanding of the concept.

Bakgrund: Kronisk sorg är en icke- patologisk, känslomässig sorg-reaktion relaterad till förluster som uppfyller den sörjandes liv. Att leva med en kronisk sjukdom innebär många förluster som kan göra det svårt att hantera situationen, särskild om sjukdomens progressivitet innebär nya förluster för patienten. Brist på kunskap om kronisk sorg kan medföra att patienter får behandling mot depression men ingen hjälp till att hantera sorgen. Syfte: Syftet är att beskriva patienters upplevelser av kronisk sorg till följd av kronisk sjukdom. Metoden: En systematisk litteraturstudie på vetenskapligt kvalitativt material gjordes med den enligt Evans beskrivna analysmetod på kvalitativ data.  Resultat: Fyra teman framkom: emotionella förluster, kroppen sviker, förlorad framtid och lindrad sorg. Förluster inskränker patienternas frihet att kunna utföra önskade aktiviteter men också planer och drömmar de haft inför framtiden. Genom egna strategier och emotionellt stöd kunde patienter lindra sin sorg och därmed lindra lidandet. Slutsats: Kronisk sorg tar sig uttryck på varierande sätt.  Emotionella upp och nedgångarna upplevs av patienter i relation till deras sjukdom. Motgångar men också påminnelser om att vara olik från friska människor, utlöser sorgen på nytt. Sjuksköterskor behöver vara observanta på patienters mentala välbefinnande och visa empati. / Background: Chronic sorrow is a non-pathological, emotional grief response related to losses that meet de mourners’ life. Living with a chronically illness involves many losses which can make it difficult to manage the situation, especially if the disease progression leads to new losses for the patient. Lack of knowledge about chronic sorrow can lead to a wrong treatment; these patients can be treated for depression but gets no necessary help to deal with their sorrow.  Aim: The aim is to describe the experiences of chronic sorrow in patients with chronic illness. Method: A systematic literature-study based on qualitative science material has been done. Evans analyses-method of qualitative data was chosen.  Results: Four teams developed: emotional losses, the body fails, a lost future and alleviate sorrow. The patient’s freedom is limited because of the losses, therefore whished activities, plans and dreams for the future have been removed. Internal strategies and emotional support could alleviate patients sorrow and therefore alleviate their suffering.  Conclusion: Chronic sorrow was expressed in a verity of ways. The emotional ups and downs were related to the patients illnesses. Adversities but also reminders of being different from healthy humans awake their sorrow over and over again. Nurses needs to be aware of the patients’ mental condition and show empathy to these patients.

Doctor of Philosophy / Department of Family Studies and Human Services / Rick J. Scheidt / Chronic sorrow has been defined as a permanent and reoccurring experience of pervasive sadness and loss which underlies the life experience and which recurs over time for the parent of a child with developmental, medical, or behavior issues that prevent him from participating in society in a way previously anticipated by parents. The functional question asked of the mothers was: “Some parents have described a sadness that can occur when they think about their child with a disability. Parents can believe they are functioning well, but have times where they feel the loss for their child.” To date, little research has targeted chronic sorrow among parents of adult children who have a disability. Neither is it known how chronic sorrow exists and has changed over the years since the initial diagnosis for this specific sample. This exploratory, qualitative study focused specifically on mothers of adult children with cerebral palsy. Snowball sampling was utilized to recruit six mothers in northeastern Kansas who were primary caregivers to their adult children with CP. Data were gathered with face-to-face mixed self-report surveys, including the Kendall Questionnaire on Chronic Sorrow; two surveys which assessed demographic, potential complications from cerebral palsy, and available resources; and a standard schedule open-ended interview targeting: personal experiences of chronic sorrow, chronic sorrow triggers (developmental milestones), and losses (including support, roles and responsibilities, and quality of life). Two-coder analyses of interview responses were conducted within cases and comparisons were made across cases. Common themes identified in the narratives included sense of isolation, fear for the future, frustration, loss of hope, exhaustion, sadness, financial challenges, guilt, and anger. For example, isolation was another theme that changed over time depending on if the mothers were providing full-time care. Also, fear for the future was a universal theme when the children were much younger, but it changed into loss of hope for some of the mothers when the child was the age of an adult. The relevance of the findings was discussed, with particular focus being the subjective meanings of chronic sorrow for this sample. Recommendations for advancing research, practice, and policy are offered.

The overall aim of this thesis was to increase our understanding and knowledge of patients’ experiences of living with multiple sclerosis (MS). A mixed-method design was used, including both qualitative and quantitative methods. Thirty-one immunologically treated MS patients were randomly selected and matched with patients without immunological treatment. Matching criteria were gender, impairment, time since diagnosis and age. One patient dropped out and therefore the final sample consisted of 61 patients. All 61 were interviewed (Studies I, III and IV) and completed the 36-item Short Form health survey questionnaire (SF-36), the Subjective estimation of Quality of Life questionnaire (SQoL), the Self-reported Impairment Check-list (SIC) (Study II) and the Montgomery–Asberg Depression Rating Scale questionnaire (MADRS) (Study III). The interviews were subjected to content analysis. Initial symptoms and being diagnosed with MS were described in terms of becoming vulnerable and remaining in that vulnerability long after the diagnosis. Eventually the patients were able to manage this emotional distress and acquired strength in their illness situation (Study I). In the matched analysis, 29 pairs of patients were included after internal drop-out. There were no statistically significant differences between the treatment and control groups. Concerning the total group of 61 patients, the self-reported impairment check-list showed that they had various problems of impairment, most evident in balance and walking. The score on health-related quality of life (SF-36) was reduced, disclosing a negative influence on vitality, physical role and function. However, subjective quality of life (SQoL) was not reduced, showing that the patients estimated their well-being to be quite unaffected (Study II). Thirty-eight of the 61 patients (62%) experienced chronic sorrow (Study III). The group were not depressed in general, only four having mild symptoms of depression, revealing that chronic sorrow is a particular form of emotional distress in MS. Chronic sorrow was experienced in terms of loss of hope, loss of control over the body and loss of integrity and dignity. When the patients could not adequately manage their sorrow and lacked support, they were struggling with their vulnerability. In the successful management of MS, losses and emotional distress are managed in such a way as to enhance personal growth, appreciation and trust in life. The theoretical model of chronic sorrow facilitated the sorting of the empirical data and the linking of these data to theory, showing the usefulness of the model (Study IV).