Background: Having the support of a partner is essential for both health related quality of life and survival in heart failure patients. However, caring for a patient with heart failure may affect the health related quality of life, well‐being and cause a burden for the partner. The partner is expected to be responsible for the care, which may have consequences for the heart failure patient’s long‐term health and well‐being. Further research to determine health related quality of life, well‐being, caregiver burden and needs of partners is warranted as well as studies evaluating interventions targeting patient‐partner dyads. Aim: The overall aim was to describe how the life situation of patient‐partner dyads was influenced by heart failure and to determine the effects of an intervention of follow‐up with education and psychosocial support for patient‐partner dyads. Design and methods: The thesis is based on three quantitative studies and one qualitative study. The first two studies were descriptive and included 135 dyads (patient‐partner) (I, II) and the randomised intervention study included a total of 155 dyads (IV). The qualitative study had a grounded theory approach. Thirteen partners were interviewed and data analysed using constant comparative method (III). Results: Caregiver burden was perceived as moderate in 30% of the partners and the rest experienced a low caregiver burden. The patients’ physical component score of SF‐36, partners’ mental component score of SF‐36 and perceived control explained 39% of the caregiver burden (I). Patients had lower health related quality of life compared to their partners in all dimensions except in the mental health domain of SF‐36 and lower qualityadjusted life year weights compared to their partners. Mental health scores were lower in partners compared to age and gender‐matched references. All other health related quality of life scores and the quality‐adjusted life year weights were comparable between the partners and the reference group. Patients had more depressive symptoms than their partners. There was no difference in the level of perceived control or knowledge about chronic heart failure between patients and partners (II). During grounded theory analysis confirmation was identified as describing the core category of the partners’ individual needs. The core category theoretically binds together three underlying subcategories: security, rest for mind and body, and inner strength. Confirmation facilitated acceptance and improvement of mental and physical health among partners (III). At the three month follow‐up the dyad‐intervention had improved perceived control in patients, but not in the partners. There were no other significant differences in the control and intervention group with regard to the dyads’ health related quality of life and symptoms of depression. There were also no differences in the patients’ self‐care behaviour and partners’ experiences of caregiver burden (IV). Conclusions and implications: Partners to patients with chronic heart failure are at risk of decreased mental well‐being. One third of the partners experienced a moderate caregiver burden and was therefore at a higher risk of poor mental health and decreased perceived control. During short‐term follow‐up the intervention with education and psychosocial support to dyads (patient‐partner) improved the level of perceived control in the chronic heart failure patient group. By identifying partnersʹ needs for security, rest for mind and body, and inner strength, healthcare professionals can confirm these needs throughout the caring process, from the critical care period and throughout rehabilitation at home. Interventions targeting dyads have been limited in previous research. Partners need to be prepared regarding the disease process, the daily regimen, hopes for the future and responsible care providers. They also need to be confirmed because they are vital to the patients’ recovery. Further, the effects of the intervention study should also include a long‐term follow‐up as well as an evaluation of the health‐economic perspective including direct and indirect costs of care.

Background: When a relative receives a cancer diagnosis the family caregivers are affected as well. Family caregivers are at high risk of developing caregiver burden since they´re exposed to stressful situations when they receive a greater responsibility towards their relative and other parts of life. The support the family caregivers receive from the health care and other social engagements is important for the caregivers wellbeing.  Aim: To describe how family caregivers experience their situation as caregivers to a relative with cancer and what kind of support they're in need of. Method: Literature review with qualitative articles. The quality of the articles was analyzed with a frame with five steps.   Results:  Three main themes with sub themes emerged. Family caregivers of relatives with cancer may experience an increased responsibility for their relative, the family and the household which can lead to feelings of inadequacy in their role as caregivers. Moreover, the caregivers may experience expectations from the health care and the relative to take on responsibilities. The caregivers also experience changes in their relationship to their relative and in relation to their own identity. They may experience the changes as stressful and be worried.  Family caregivers experience it to be important with social support from family, close relatives and people in similar situations. They wish for more support and information from the health care. Conclusion: The family caregivers describe caregiver burden in relation to their experiences of being overlooked and being in lack of social support and support from the health care. More research is needed to deepen the knowledge in the area. The themes from the study and previous research needs to be implemented in health care.  Keywords: Cancer, experiences, caregiver burden, support, caring science, literature review / Bakgrund: När en närstående drabbas av cancer påverkas även de anhöriga runt omkring dem. Vårdande anhöriga löper risk att drabbas av anhörigbörda då de utsätts för flera påfrestningar när de får ett större ansvar för sin närstående och andra delar av livet. Det stöd som de anhöriga får från hälso- och sjukvården och andra sociala sammanhang är viktigt för den anhörigas mående.  Syfte: Att beskriva hur anhöriga upplever det att vara vårdgivare till närstående med cancer och vilket stöd de behöver.   Metod: Litteraturöversikt med kvalitativa artiklar. Artiklarna kvalitetsgranskades och analyserades i fem steg.  Resultat: Tre huvudteman med underteman identifierades. Anhöriga till närstående med cancer kan uppleva ett ökat ansvar för sin närstående samt för familjen och hushållet vilket kan medföra att de upplever otillräcklighet i sin roll som vårdande anhörig. Vidare kan de uppleva förväntningar från vården och den närstående om att de ska ta ansvar. De anhöriga kan även uppleva förändringar både i sin relation till den närstående och i förhållande till sin egen identitet samt att de upplever stress och oro över dessa förändringar. För anhöriga till personer med cancer är det viktigt med socialt stöd från familj, närstående eller personer i liknande situationer. Från hälso- och sjukvården önskar de ökat stöd samt mer information om sjukdomen.  Slutsats: De vårdande anhöriga beskrev en stor anhörigbörda relaterat till upplevelser av att bli förbisedda och att de saknade socialt stöd och/eller stöd från hälso- och sjukvården. Mer forskning behövs för fördjupad kunskap inom området. Behovsområdena från studien samt tidigare forskning behöver implementeras i hälso- och sjukvården.  Nyckelord: Cancer, upplevelser, anhörigbörda, stöd, vårdvetenskap, litteraturöversikt

No description available.

Providing care to child with a chronic, rare diseases has been identified as a major life stressor with a myriad of negative physical and mental health consequences. These stresses have previously been found to create burden that may impair caregiving efforts and increase the risk of mortality for both the caregiver and affected child. Many rare diseases affect children. It is not known how caregiver burden and the source of stress varies by disease. Qualitative methods have been used to understand caregiver experience with the rare disease, epidermolysis bullosa (EB), but no such studies have occurred in the United States. In order to better understand the experience of caregiving for a child with EB in the United States, a qualitative, phenomenological study was conducted. Data were collected via semi-structured interview concerning one primary research question, what is the general experience of being an EB caregiver?, and five sub-questions: (1) What stresses are specific to EB caregiving?, (2) How do EB caregivers learn to care for their child with severe EB?, (3) How do EB caregivers experience medical interactions?, (4) How do EB caregivers experience the hospitalization of their child?, and (5) How do EB caregivers cope with their caregiving role? Data analysis, using interpretive phenomenological analysis, yielded several novel findings. These included: an unusually strong emotional connection between the caregiver and child with EB, experiences of depersonalization or derealization for the EB caregiver during wound care, the positive impact of tempering expectations and celebrating for victories for the affected child, the regularity of medical injury for EB children, the traits of physicians perceived to be helpful or harmful, the stresses associated with hospitalization of children with EB, and how public recognition through community events buffers stress for EB caregiver. Finally, a framework of risk factor, protective factors, and burdensome outcomes was constructed. Risk factors were condensed into three domains: time constraints, financial problems, and pain in the affected child. Control and community supper were among the identified protective factors for EB caregivers. These findings have implications for counseling interventions for use EB caregivers, especially in hospital settings.

Using data from a purposive sample of 78 parents of children with type 1 diabetes, relationships were examined between the level of metabolic control of the child with diabetes (as measured by the HbA1c percentage), parents' marital conflict, caregiver burden, and use of psychological control. Also explored were family income and the education levels of mothers and fathers. Differences between mothers and fathers were also considered. Better metabolic control (lower HbA1c) was related to lower levels of fathers' caregiver burden. Marital conflict was also associated with mothers' and fathers' caregiver burden. Finally, mothers' caregiver burden predicted mothers' use of psychological control, and fathers' caregiver burden predicted fathers' use of psychological control. Fathers' paths were stronger from marital conflict to caregiver burden and from caregiver burden to psychological control than the mothers' paths. Only fathers had a significant path from HbA1c to caregiver burden.

Bakgrund Alkoholmissbruk är en av de främsta bestämningsfaktorerna för hälsa i världen. Globalt uppskattas 280 miljoner personer ha ett alkoholmissbruk och i Sverige antas antalet vara 350 000 personer. På grund av alkoholens negativa hälsoeffekter finns det en rad allvarliga följdsjukdomar, därmed är personer med alkoholmissbruk en grupp som personal inom hälso- och sjukvården kommer i kontakt med. Vid sjukdom påverkas anhöriga, ibland positivt men mestadels negativt. De negativa effekterna sammanfattas som anhörigbörda. Bördan påverkar de anhörigas hälsa vilket har konsekvenser för både dem och patienten. Syfte Syftet var att beskriva hur anhörigas hälsa påverkas av en närståendes alkoholmissbruk. Metod En icke-systematisk litteraturöversikt baserad på 20 vetenskapliga originalartiklar, av kvalitativ och kvantitativ ansats. Artiklarna samlades in från databaserna PubMed, CINAHL samt PsycInfo med hjälp av sökord. Artiklarna har därefter genomgått kvalitetsgranskning utifrån Sophiahemmet Högskolas bedömningsunderlag för vetenskaplig klassificering och kvalitet. Sammanställning och analys skedde med integrerad dataanalys.   Resultat Studien fann en rad faktorer som påverkade hälsan negativt hos anhöriga till personer som missbrukar alkohol. Dessa påverkansfaktorer fanns på individnivå, social nivå och påverkade de anhörigas hälsomedvetenhet och hantering. Den anhörigbörda detta innebar hade påverkan på fysisk, psykisk och social hälsa. Att växa upp i en familj drabbad av alkoholmissbruk ökade bland annat mortalitet och förekomst av psykisk sjukdom. Anhörigskapet hade för det mesta negativ inverkan på relationer. Stigmatisering och fördomar mot alkoholmissbruk isolerade generellt de anhöriga. Ett bifynd var att anhörigbörda hanterades på olika sätt. Vissa använde välanpassade copingstrategier, andra inte.   Slutsats Studien visar på vikten av att hälso- och sjukvården uppmärksammar och stödjer de anhöriga för att minska deras börda. De försämrade familjerelationerna som alkoholmissbruket skapar, kan även förklara och ge oss förståelse för anhörigas beteende och hur anhöriga kommunicerar med sina närstående. Stigmatiseringen av alkoholmissbruk ställer krav på ett fördomsfritt och öppet bemötande men också mod vid uppmärksammandet av dessa frågor. / Background Alcohol abuse is one of the main determinants of health in the world. Globally, it is estimated that 280 million people have an alcohol use disorder [AUD]. In Sweden the number is assumed to be 350,000. Due to the numerous negative health effects of alcohol, persons with AUD are encountered in healthcare contexts. Illness affects the family member's capacity for caring for the patient. In some cases, this is a positive experience. However most often it creates a caregiver burden. This burden has consequences in health for both caregivers and the patients. Aim The aim was to describe how alcohol abuse affects family members' health. Method  A non-systematic literature review based on 20 original scientific articles with qualitative or quantitative approach. The articles were obtained from PubMed, CINAHL and PsycInfo. The articles have subsequently undergone a quality review based on Sophiahemmet University's assessment basis. Compilation and analysis took place with integrated data analysis.  Results The study found factors that influenced family members’ health negatively that were linked to alcohol abuse on both an individual and social level. This caregiver burden had an impact on physical, mental, and social health. Growing up in a family affected by alcohol abuse increased mortality and the incidence of mental illness, among other things. Alcohol abuse had a negative impact on family relationships. Stigmatization and prejudice against alcohol abuse generally caused isolation. An incidental finding was that caregiver burden was handled in different ways. Some used well-adapted coping strategies, others did not. Conclusions The study shows the need for the healthcare system to support families to reduce their burden. The deteriorating effect from alcohol abuse on family relationships can also explain family communication and behaviour. The stigmatization of alcohol abuse demands a non-prejudiced and open approach, but also the courage to raise these issues.

No description available.

Das Ziel der vorliegenden Untersuchung bestand darin, eine aussagekräftige und effektive Skala zur Messung der Filialen Reife pflegender Angehöriger zu finden. Im Mittelpunkt standen hierzu die Louvain Filial Maturity Scale A nach Marcoen (LFMS-A) und die Filial Anxiety Scale nach Cicirelli (FAS). Diese wurden erwachsenen betreuenden Kindern von Parkinsonpatienten vorgelegt, um Zusammenhänge zwischen dem Grad ihrer filialen Reife bzw. Angst und dem Ausmaß ihres subjektiven Belastungserlebens zu ermitteln. Besonderes Augenmerk wurde darauf gelegt, welche der Skalen in einem engeren Zusammenhang mit der Belastung der betreuenden Söhne und Töchter stand und folglich eine größere Relevanz in der Beziehung zwischen hilfsbedürftigen Eltern und ihren erwachsenen Kindern aufweist. Darüber hinaus wurde der Frage nachgegangen, inwieweit sich Belastungs- und Beziehungserleben auf die subjektive Schlafqualität der Studienteilnehmer auswirken. Die Stichprobe dieser Untersuchung setzte sich aus 50 Patienten-Betreuer-Paaren und 50 Kontrollpersonen zusammen, die mit Hilfe standardisierter Fragebögen getrennt voneinander interviewt wurden. Anhand der vorliegenden Ergebnisse konnte gezeigt werden, dass ein enger Zusammenhang zwischen der filialen Angst bzw. Reife erwachsener Kinder hilfsbedürftiger Eltern und deren subjektivem Belastungserleben besteht (Hypothese 1): Eine verhältnismäßig hohe filiale Angst sowie ein geringer Grad filialer Reife wirkt sich negativ auf die Betreuungssituation aus, was sich in einer Verstärkung der subjektiven Belastung der betreuende erwachsenen Kinder von Parkinson-Patienten widerspiegelt. Die mittels der FAS gemessene filiale Angst der betreuenden erwachsenen Kinder der Parkinsonpatienten steht in einem engeren Zusammenhang mit ihrer subjektiv empfundenen Belastung als ihre anhand der LFMS-A erhobene filiale Reife (Hypothese 2). Hinsichtlich der allgemeinen Schlafqualität weisen die aktuellen Ergebnisse sowohl bei den erwachsenen betreuenden Kindern als auch bei den Parkinson-Patienten auf deutliche Zusammenhänge mit ihrer gesundheitsbezogenen Lebensqualität hin (Hypothese 3). Darüber hinaus konnte mit Hilfe der aktuellen Untersuchungsergebnisse die Verbindung zwischen einem hohen Grad der Pflegebedürftigkeit der Parkinsonpatienten und einem erhöhten Belastungserleben ihrer betreuenden Söhne und Töchter eindeutig gezeigt werden (Hypothese 4). Einzig die fünfte Hypothese, laut der der Grad der filialen Reife in einem direkten Zusammenhang mit dem Schlafverhalten der Studienteilnehmer steht, konnte im Rahmen der hier vorliegenden Untersuchung nicht bestätigt werden (Hypothese 5). Die Ergebnisse dieser Studie sollen dazu beitragen, das Konzept der Filialen Reife langfristig in der Angehörigenberatung zu etablieren, um Risikopersonen besser beraten und Copingstrategien für einen gelungenen Umgang mit pflegebedürftigen Familienmitgliedern gezielter fördern zu können.

Ny statistikk viser økende forekomst av aldersdemens blant eldre. Menn utgjør en økende gruppe omsorgsgivere. Disse mennene har fått relativt liten forskningsmessig oppmerksomhet, det finnes en begrenset mengde litteratur tilgjengelig om menn som omsorgsgivere for ektefeller med aldersdemens. Der er derfor viktig å gi dette feltet forskningsmessig oppmerksomhet, blant annet for å kunne gi helsepersonell kunnskap om denne gruppen. Med økt innsikt i mennenes opplevelse av sin situasjon vil de kunne gis bedre følelsesmessig og praktisk assistanse i omsorgsarbeidet sitt. Det ble gjennomført en studie med fokus på ektefeller av menn med demente ektefeller ved bruk av Grounded Theory som metode. Studien ble basert på opplevelsene til ni menn, seks av dem hadde omsorg for hjemmeboende ektefelle, de tre andre hadde flerårige erfaringer med å ha dement ektefelle hjemme men hadde nå sine ektefeller i sykehjem og fulgte dem opp der. Data ble samlet gjennom dybdeintervjuer tatt opp på bånd. Intervjuene ble analysert ved bruk av Grounded Theory. Det ble funnet fem hovedkategorier, mestring, ensomhet, lojalitet, sorg og tap av felleskap med ektefelle / Recent statistics reveal a growth in the incident of Alzheimer disease and related dementia amongst elderly. Males make up an increasing group of caregivers, yet little attention has been given to them as that, there is limited literature available on husbands as caregivers for wives with the disease. Therefore, the need to conduct research in the area of male caregivers is essential if nurses and other help personnel are to understand and provide appropriate support and care for male caregivers. A qualitative study which focused on the experience of husbands who are home caregivers of wives diagnosed with dementia was conducted using Grounded Theory as research method. The study was based on the experience of nine husbands, six of them were caregiving for their wives at home at the time of the interview, the others had their wives in an institutional setting after years of home caregiving. Data collected during in-dept tape recorded interviews with the participants was analysed using Grounded Theory. Five major categories themes emerged from the participants stories, coping methods, loneliness, grief, loyalty and loss of fellowship in relationship. / <p>ISBN 91-7997-140-7</p>

[pt] O envelhecimento populacional é uma realidade que acarreta consequências como o aumento de doenças crônico degenerativas e síndromes demenciais. Neste contexto são necessários cuidadores informais, familiares e formais que podem atuar tanto na residência do idoso como também nas Instituições de Longa Permanência para Idosos (ILPI). O presente trabalho tem por objetivo estudar o papel e particularidades de cada um dos agentes do cuidado - idosos e cuidadores, além de apresentar ideias que visam melhorar a qualidade de vida, o funcionamento cognitivo e aliviar os sintomas de depressão e ansiedade para ambos os grupos. Para tanto, quatro estudos desenvolveram este objetivo com diferentes ferramentas. Como resultados, é possível destacar o impacto da sobrecarga do cuidador no funcionamento cognitivo de cuidadores familiares, a influência da renda média e da escolaridade no funcionamento cognitivo de cuidadores contratados, além da investigação sobre os idosos receptores de cuidado, que demonstraram desempenho cognitivo abaixo do esperado. Por fim, são propostas ações que visam melhorar a qualidade de vida e a saúde mental, como um todo, dentro do ambiente institucional. É importante ressaltar a necessidade de mais estudos e implementação de práticas que visem melhorar as condições de vida e trabalho dentro das Instituições de Longa Permanência para Idosos. / [en] Population aging is a reality that has consequences such as the increase in chronic degenerative diseases and dementia syndromes. In this context, informal, family and formal caregivers are needed who can work both in the elderly s residence as well as in Long Stay Institutions for the Elderly (ILPI). The present work aims to study the role and particularities of each of the care agents - the elderly and caregivers, in addition to presenting ideas that aim to improve quality of life, cognitive functioning and relieve symptoms of depression and anxiety for both groups. To this end, four studies developed this objective with different tools. As a result, it is possible to highlight the impact of caregiver burden on the cognitive functioning of family caregivers, the influence of average income and schooling on the cognitive functioning of hired caregivers, in addition to the investigation of elderly care recipients, who demonstrated cognitive performance below expected. Finally, actions are proposed that aim to improve the quality of life and mental health, as a whole, within the institutional environment. It is important to emphasize the need for further studies and implementation of practices that aim to improve living and working conditions within Long Stay Institutions for the Elderly.