Encounters in which shared decision-making occur relies on patients and healthcare professionals establishing a partnership. Yet, little is known about the therapeutic relationship (TR) specifically for the implementation and use of patient decision aids (PDA) to facilitate shared decision-making. The aim of this thesis was to explore how the TR is considered when planning PDA implementation for patients eligible for or with an implantable cardioverter-defibrillator (ICD). Using Thorne's interpretive description approach, I conducted a secondary thematic analysis using transcripts with 17 healthcare professionals, ten patients and three family members. Findings were mapped to the TR elements. I identified three themes. First, Pieces of the puzzle: Elements of the TR revealed that while respect and therapeutic communication were identified as important for PDA implementation, other TR were either referred to implicitly or not at all. Second, Good intentions and challenges of establishing a TR revealed that healthcare professionals wanted to engage in TR but lacked time and felt discomfort navigating ICD decisions. Finally, in PDA as support for the TR, participants considered PDAs as being able to facilitate TR elements such as communication and respect, enhancing the consultation. In conclusion, there is a role for TR elements when planning PDA implementation. Further research is needed to explore the other therapeutic relationship elements of genuineness, manifesting a presence, active listening, and reciprocity.

Syftet med denna litteraturöversikt var att beskriva den hälsorelaterade livskvaliteten hos patienter med en implantable cardioverter defibrillator (ICD).  Studien genomfördes som en litteraturöversikt, där tolv vetenskapliga artiklar av kvantitativ karaktär analyserades och användes i studiens resultatdel.  Sökorden som användes var Defibrillators, Implantable, Quality of Life och health related. Inklusionskriterier var artiklar skrivna på engelska, peer-reviewed, publicerade från år 2000 och framåt samt deltagarna i dessa studier skulle vara 19 år eller äldre. I studien framkom det att ICD-patienter undvek specifika platser, objekt och fysiska aktiviteter relaterade till ICD:n. Också en oro över bilkörning framkom.  ICD-patienter utsätts för en förändring i livssituation och är i behov av stöd och individuell informationsgivning gällande deras medicintekniska anordning. Idag är största delen av forskning gjord på män, då implantationsfrekvensen är högre hos dessa. Vidare forskning är relevant och bör omfatta kvinnor, för att på så sätt kunna anpassa framtida vårdinsatser på ett individuellt plan. Vårdgivare behöver fördjupad kunskap inom detta område, då implantationsfrekvensen av ICD är ökande. Kunskap hos vårdgivare kan möjligtvis leda till en ökad hälsorelaterad livskvalitet inom denna patientgrupp. / The aim with this literature study was to describe the health related quality of life in patients with an implantable cardioverter defibrillator (ICD). The study was carried out as a literature study and twelve articles, which all were of quantitative character, were analyzed and constituted the result of the study. The search words that were used were Defibrillators, Implantable, Quality of Life and health related. The criteria of inclusion were articles in English, peer-reviewed, published in 2000 to present day and the participants in these studies had to be 19 years or elder. In the study it emerged that ICD-patients avoided specific places, objects and physical activities related to the ICD. Also a concern regarding driving appeared. ICD-patients are subjects of a change in their life situation and are in need of support and individual information regarding their medicine technical device. To this date, the majority of researches are conducted on men, because of the higher implant frequency within this gender. Further researches are of importance and shall enclose the female gender, to be able to adapt the contribution of nursing on an individual level. Health care providers are in need of deepened knowledge within this area, because of the rising frequency of implantation. This knowledge might lead to a increased health related quality of life within this patient group.

<p>Syftet med denna litteraturöversikt var att beskriva den hälsorelaterade livskvaliteten hos patienter med en implantable cardioverter defibrillator (ICD).  Studien genomfördes som en litteraturöversikt, där tolv vetenskapliga artiklar av kvantitativ karaktär analyserades och användes i studiens resultatdel.  Sökorden som användes var <em>Defibrillators, Implantable, Quality of Life </em>och<em> health related. </em>Inklusionskriterier var artiklar skrivna på engelska, peer-reviewed, publicerade från år 2000 och framåt samt deltagarna i dessa studier skulle vara 19 år eller äldre. I studien framkom det att ICD-patienter undvek specifika platser, objekt och fysiska aktiviteter relaterade till ICD:n. Också en oro över bilkörning framkom.  ICD-patienter utsätts för en förändring i livssituation och är i behov av stöd och individuell informationsgivning gällande deras medicintekniska anordning. Idag är största delen av forskning gjord på män, då implantationsfrekvensen är högre hos dessa. Vidare forskning är relevant och bör omfatta kvinnor, för att på så sätt kunna anpassa framtida vårdinsatser på ett individuellt plan. Vårdgivare behöver fördjupad kunskap inom detta område, då implantationsfrekvensen av ICD är ökande. Kunskap hos vårdgivare kan möjligtvis leda till en ökad hälsorelaterad livskvalitet inom denna patientgrupp.</p> / <p>The aim with this literature study was to describe the health related quality of life in patients with an implantable cardioverter defibrillator (ICD). The study was carried out as a literature study and twelve articles, which all were of quantitative character, were analyzed and constituted the result of the study. The search words that were used were <em>Defibrillators, Implantable, Quality of Life </em>and<em> health related. </em>The criteria of inclusion were articles in English, peer-reviewed, published in 2000 to present day and the participants in these studies had to be 19 years or elder. In the study it emerged that ICD-patients avoided specific places, objects and physical activities related to the ICD. Also a concern regarding driving appeared. ICD-patients are subjects of a change in their life situation and are in need of support and individual information regarding their medicine technical device. To this date, the majority of researches are conducted on men, because of the higher implant frequency within this gender. Further researches are of importance and shall enclose the female gender, to be able to adapt the contribution of nursing on an individual level. Health care providers are in need of deepened knowledge within this area, because of the rising frequency of implantation. This knowledge might lead to a increased health related quality of life within this patient group.</p>

Background: The implantable cardioverter defibrillator (ICD) is the most effective treatment available for terminating potentially life-threatening ventricular tachycardia and ventricular fibrillation and reducing the risk of mortality. Despite its established health benefits, ICD therapy is accompanied by a unique array of patient and psychological factors meriting ample research attention. The purpose of this paper is to examine research trends and results regarding patient factors in cardiac and ICD research and to discuss key areas for future research. Hypothesis: An increase in articles associated with patient factors in cardiac and ICD research will be shown over time. Methods: The Medical Subject Heading (MeSH) system in PubMed was used to index articles under a range of psychosocial headings for both cardiovascular disease and ICDs to quantify the frequency of articles published across time, the journals most frequently utilized, the most productive institutions, and the most common areas of inquiry. Results: A significant positive relationship was revealed between patient factors in cardiac research (r = 0.96, p < 0.01) and ICD research (r = 0.88, p < 0.01) over time. Research is limited by the small number of investigations and institutions. Of the 178 articles on patient factors in ICD research, the most frequent areas of inquiry were psychosocial treatment (70.79%), anxiety (33.15%), quality of life (32.02%), and depression (29.78%). Conclusion: Future research examining positive adjustment is warranted, especially in light of increased prophylactic ICD implantation and possible decreased treatment burden associated with decreased shocks.

No description available.

Background: Implantable cardioverter defibrillators (ICDs) deliver therapy in the form of an internal shock should a life-threatening arrhythmia occur. Literature suggests that patients have misconceptions regarding ICD therapy and unmet information needs. Purpose: This study assessed the feasibility of delivering a pre-implantation nurse-led educational intervention to ICD candidates. Methods: ICD candidates attending an outpatient preoperative clinic were invited to participate. Consented participants were randomized to standard care or standard care plus an educational intervention. The educational intervention addressing information gaps identified in the ICD literature was delivered during the preoperative visit. The primary outcome was feasibility with the following targeted rates, (1) 80% recruitment; (2) ≥ 95% consent; (3) 90% randomization; (4) ≥ 90% completion of questionnaires; (5) 80% of intervention sessions delivered less than 45 minutes; and (6) 90% of intervention content delivered. At baseline, demographic data and Patient-Reported Outcomes Measurement Information System (PROMIS) anxiety scores were collected. Four weeks post-ICD implantation, participants completed the PROMIS anxiety measure, Florida Patient Acceptance Survey (FPAS), and Florida Shock Anxiety Scale (FSAS). Results: Twenty patients consented to the study (10 standard care/10 standard care plus the educational intervention). Feasibility outcomes achieved were, (1) recruitment rate of 80%; (2) consent rate of 87%; (3) 100% randomization; (4) 80% completion of questionnaires; (5) 100% of intervention sessions completed in less than 45 minutes; and (6) intervention checklist completion rate of 100%. The four-week mean (SD) FPAS scores were 80.0 (13.4) in the intervention group compared to 77.0 (16.5) in standard care. Mean (SE) four-week PROMIS scores were 45.4 (6.4) in the intervention group and 43.7 (8.6) in standard care. Mean FSAS (SD) scores were 14.7 (4.6) in the intervention group and 13.3 (3.9) in standard care. Conclusion: The results demonstrated feasibility of delivering a pre-implantation nurse-led educational intervention in an outpatient clinic setting to ICD candidates. Further studies to evaluate the effectiveness of the intervention on patient-reported outcomes are warranted. / Thesis / Master of Science (MSc) / An ICD is a medical device placed under the skin that can fix a dangerous heart rhythm. It can do so by shocking the patient’s heart if the ICD senses a dangerous heart rhythm. This study was done to determine if it is practical to deliver education to patients before they receive their ICD. Some patients feel they do not receive enough information before getting an ICD. No studies have tested how education before receiving an ICD can impact a patient’s quality of life. In this study, ten people received usual care while ten people received usual care and ICD education from a nurse before ICD implantation. The results of this study determined that it was practical for nurses to deliver ICD teaching before the ICD was implanted. A future study testing the impact of education on the quality of life of ICD patients can and should be completed.

No description available.

<p><strong>Sammanfattning</strong></p><p>Implanterbar defibrillator (ICD) har visat sig förlänga överlevanden hos patienter med livshotande hjärtklappningar. Andelen bärare av implanterbara defibrillatorer förväntas att öka. Flera studier har redan beskrivit de drabbades livssituation och livskvalitet. Trots detta behövs det flera kvalitativa studier angående ICD-bärares erfarenheter i vardagen. Fenomenet att vara bärare av en implanterbar defibrillator beskrivs i föreliggande examensarbete utifrån en fenomenologisk forskningsansats och dess reflekterande livsvärldsperspektiv. Datainsamlingen utgjordes av nio djupintervjuer. Syftet var att beskriva innebörden av att vara bärare av en implanterbar defibrillator. Resultatet, fenomenets generella struktur, beskriver ett tvetydigt accepterande av en trygghet och otrygghet i livssituationen. Den aktiva och oförutsägbara kroppen är utsatt för något unikt, en tvetydig livlina. Fenomenets generella struktur belyses via fem konstituenter; <em>det goda och onda tillslaget, känslan av stöd i omgivning, kunskap - en säkerhet i vardagen, den aktiva och oförutsägbara kroppen samt en utsatt kropp</em>. Slutsatsen ses som ett accepterande av en tvetydig livlina. Att acceptera livlinan framkom i resultatet som ett självklart val.</p><p> </p> / <p><strong>Abstract</strong></p><p>Implantable Cardioverter Defibrillator (ICD) has shown to prolong survival in patients with life threatening tachyarrythmias. The number of implantable cardioverter defibrillators is expected to increase. Several studies have already described ICD-recipents life-situation and quality of life. However, additional qualitative studies concerning ICD-recipients everyday experiences are required. The phenomenon of living with an implantable cardioverter defibrillator is described in this paper from a phenomenological approach and its reflecting lifeworld perspective. The data collection was made out of nine in depth interviews. The purpose was to describe the meaning of living with an implantable cardioverter defibrillator. The result, the phenomenon’s general structure, describes an ambiguous acceptance of a security and insecurity in the life-situation. The active and unpredictable body is exposed to something unique, an ambiguous lifeline. The phenomenon’s general structure is highlighted through five constituents; <em>the good and bad shock, the experience of support in those around, knowledge - a safety in the every day life, the active and unpredictable body and the exposed body.</em> The conclusion is seen as an acceptance of an ambiguous lifeline. To accept the lifeline appeared from the result as the obvious choice.</p>

Ser cuidador informal de pacientes com doenças crônicas pode implicar em sobrecarga e sofrimento psicológico significativo, potencialmente prejudiciais para a própria saúde física e mental e para a recuperação do paciente. Pouco se sabe sobre as experiências e características psicossociais dos cuidadores de pacientes portadores de Cardioversor Desfibrilador Implantável (CDI), principalmente na população brasileira, de forma que o presente estudo (quantitativo descritivo transversal) teve por objetivos caracterizar demográfica e psicossocialmente uma amostra não probabilística de cuidadores informais de pacientes portadores de CDI que se encontravam em tratamento médico em um hospital-escola do interior do Estado de São Paulo. As variáveis estudadas incluíram: características sóciodemográficas, qualidade de vida, ansiedade, depressão e percepção de sobrecarga. Participaram da pesquisa 60 cuidadores, entrevistados entre setembro de 2010 a maio de 2011. Para a coleta dos dados foram usados: Roteiro de Entrevista Semiestruturada, elaborado para esta pesquisa, Questionário de Avaliação de Saúde SF-36, Escala Hospitalar de Ansiedade e Depressão e a Zarit Burden Interview. Os dados foram analisados quantitativamente de forma descritiva. Posteriormente verificou-se associação estatisticamente significativa (p<=0,05) entre algumas variáveis de interesse, por meio do Teste Exato de Fisher. Os resultados mostraram que a média de idade dos cuidadores foi de 52,5 anos (DP=14,76), eram em sua maior parte do sexo feminino (n=45, 75%), o cônjuge do(a) paciente (n=39, 65%), com escolaridade predominante de até quatro anos (n=28, 46,67%), sendo a maioria (45, 75%) portadora de problemas de saúde. Vinte e cinco cuidadores (41,67%) apresentaram sintomas indicativos de ansiedade e 13 (21,67%) de depressão. Na avaliação da qualidade de vida, a média de escore mais elevado foi no domínio Aspectos Sociais (Média=78,12, DP=27,48) e o mais baixo em Vitalidade (Média=60,25, DP=26,03). O escore médio relacionado à percepção de sobrecarga foi de 19,93 (DP=12,51, Mediana= 18,5). Os participantes relataram alterações significativas em suas vidas após o implante do CDI, preocupações com a saúde do paciente e funcionamento do dispositivo, dificuldades relacionadas ao papel de cuidador, além de dúvidas sobre o desfibrilador implantável. Os resultados confirmaram que o implante do CDI no paciente impactou significativamente na vida de seus cuidadores informais, sendo necessário o oferecimento de apoio emocional e orientações específicas por parte dos profissionais da saúde para auxiliá-los na adaptação e enfrentamento adequado dessas situações. Dada a escassez de estudos brasileiros nesta população e alguns fatores metodológicos limitantes, é necessário que mais investigações sejam realizadas para comparar estes resultados. / Being an informal caregiver of patients with chronic diseases may imply significant psychological burden and suffering, potentially harmful to caregiver\'s own physical and mental health and patient\'s recovery. Little is known about the psychosocial experiences and characteristics of caregivers of patients with Implantable Cardioverter Defibrillator (ICD), mainly in the Brazilian population, so that the purpose of the present study (transversal descriptive quantitative) was to characterize, both demographically and psychosocially, a nonprobabilistic sample of informal caregivers of patients with ICD undergoing treatment in a university hospital in the interior of the State of São Paulo. The studied variables comprised: sociodemographic characteristics, life quality, anxiety, depression and perception of burden. Sixty caregivers took part in the survey, and they were interviewed between September, 2010 and May, 2011. Data collection used the following instruments: Semi-structured Interview Script prepared for this survey, SF-36 Health Evaluation Questionnaire, Hospital Anxiety and Depression Scale and the Zarit Burden Interview. Data was analyzed quantitatively in a descriptive way. Subsequently, statistically significant association (p<=0,05) was verified between some variables of interest through Fisher\'s Exact Test. Results describe that the average age of caregivers was 52.5 years (DP=14.76), they were mostly female (n=45, 75%), and patient\'s spouses (n=39, 65%), predominantly with up to four years of education (n=28, 46.67%), and most (45, 75%) with health problems. Twenty-five caregivers (41.67%) presented symptoms related to anxiety and 13 (21.67%) to depression. In life quality evaluation, the highest average score was in the Social Aspects dominion (Average=78.12, DP=27.48) and the lowest in Vitality (Average=60.25, DP=26.03). The average score regarding burden perception was of 19.93 (DP=12.51, Median= 18.5). Participants reported significant changes in their lives after ICD implant, concerns about patient\'s health and device operation, difficulties concerning their role as caregivers, in addition to doubts about the implantable defibrillator. Results confirm that the ICD implant had a significant impact in the life of their informal caregivers, requiring provision of emotional support by healthcare professionals in order to help them adapt and properly cope with these situations. Due to the scarcity of Brazilian studies in this population and some limiting methodological factors, further investigation is required to compare these results.

Sammanfattning Implanterbar defibrillator (ICD) har visat sig förlänga överlevanden hos patienter med livshotande hjärtklappningar. Andelen bärare av implanterbara defibrillatorer förväntas att öka. Flera studier har redan beskrivit de drabbades livssituation och livskvalitet. Trots detta behövs det flera kvalitativa studier angående ICD-bärares erfarenheter i vardagen. Fenomenet att vara bärare av en implanterbar defibrillator beskrivs i föreliggande examensarbete utifrån en fenomenologisk forskningsansats och dess reflekterande livsvärldsperspektiv. Datainsamlingen utgjordes av nio djupintervjuer. Syftet var att beskriva innebörden av att vara bärare av en implanterbar defibrillator. Resultatet, fenomenets generella struktur, beskriver ett tvetydigt accepterande av en trygghet och otrygghet i livssituationen. Den aktiva och oförutsägbara kroppen är utsatt för något unikt, en tvetydig livlina. Fenomenets generella struktur belyses via fem konstituenter; det goda och onda tillslaget, känslan av stöd i omgivning, kunskap - en säkerhet i vardagen, den aktiva och oförutsägbara kroppen samt en utsatt kropp. Slutsatsen ses som ett accepterande av en tvetydig livlina. Att acceptera livlinan framkom i resultatet som ett självklart val. / Abstract Implantable Cardioverter Defibrillator (ICD) has shown to prolong survival in patients with life threatening tachyarrythmias. The number of implantable cardioverter defibrillators is expected to increase. Several studies have already described ICD-recipents life-situation and quality of life. However, additional qualitative studies concerning ICD-recipients everyday experiences are required. The phenomenon of living with an implantable cardioverter defibrillator is described in this paper from a phenomenological approach and its reflecting lifeworld perspective. The data collection was made out of nine in depth interviews. The purpose was to describe the meaning of living with an implantable cardioverter defibrillator. The result, the phenomenon’s general structure, describes an ambiguous acceptance of a security and insecurity in the life-situation. The active and unpredictable body is exposed to something unique, an ambiguous lifeline. The phenomenon’s general structure is highlighted through five constituents; the good and bad shock, the experience of support in those around, knowledge - a safety in the every day life, the active and unpredictable body and the exposed body. The conclusion is seen as an acceptance of an ambiguous lifeline. To accept the lifeline appeared from the result as the obvious choice.